swilkinson

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  1. swilkinson

    Pat's daughter

    By swilkinson,

    This week is the start of a new routine for Ray and I. He is going to go to Daycare twice a week, on Mondays and Wednesdays. The coordinator of Daycare selected these days and although I would have preferred Tuesday and Thursday I will accept her decisions. She especially wanted Ray to go on Wednesdays as there are a group of men there on that day and she thought he would fit in well. As soon as the bus came into the driveway today I recognised one as a former member of his stroke support group so they should get along okay.
     
    On Mondays I am going to do “me time” in the morning and visit to Mum in the afternoon. I will see her right after her lunch so she should be sitting in her chair and be bright and awake (I hope). I have to provide transport for Ray on that day. On Wednesday (today) I did shopping, then came home and did chat and then thought I would go to the beach.
     
    I decided not to go too far and went down to a little beach which is off a coastal reserve. It was the place we used to take the kids to swim when they were young as there are rock pools and it is shallow water mostly protected from the big waves. That was not the case today as the seas are very rough, still under the influence of cyclone activity across the Pacific and up off northern Queensland.
     
    The view from the lookout was lovely today so I stood there for a while and a younger man came and we got talking, just chat. He suddenly said to me: “Are you Pat’s daughter?” Amazing really that as a teenager he lived in the same street Mum and Dad used to live in and remembered me from back then. He knew my Dad died in 2000 and asked if Mum was still alive. We then did a roll call of who was still living around here and who had moved. I really enjoyed the chat, although he is mid-thirties it was like talking to an old friend.
     
    I decided to go over to the next beach and walk on the sand, which I did. The wind was blowing and although it looked tempting I did not walk in the water as I could see “blue bottles” small bladder stingers, and did not fancy one of those long stingers they trail behind them wrapped around my legs. They have a nasty sting, not deadly like man’o’wars and box jellyfish, but painful enough to make you cry. I had a few of those when I was young and am wiser now.
     
    I am so blessed to live where I do, on the coastal strip, two streets over from the beach, in the house that Ray and I bought together 40 years ago. It is not modern, or fashionable, it is a little run-down and needs some work done on it but it is our family home. Nothing like having that as a back-up in your life.
     
    My Dad died on 2nd January 2000, but he lives on in me. I am Pat’s daughter. I am also Marj’s daughter but only in the minds of a handful of nurses and other staff members where she lives in the nursing home and in the minds of those who survive of her old friends. At 92 she doesn’t have a lot who will mourn her passing. The parents of the young man I met up with today were neighbours of my Mum and Dad so maybe they will be at her funeral, who knows?
     
    I was thinking that I would move my chat time but I won’t, it will fit in with the new routine. I think we are a lovely group of friends who chat together now and I don’t want to change that. I am pleased that we have some new people in our group who have only chatted for a short time and only here at Strokenet. This is a remarkable site, unparalleled for friendliness and such a wonderful place to find when you feel surrounded by the dark clouds of stroke for the first time.
     
    The caregivers here are busy people and need that short time together to offload some of their problems, share information, share a laugh, feel for a while that they are among friends and can say whatever they want. We all share the commonality of lives suddenly changed, ambitions dashed, retirement plans overturned. There is also the reality coming in suddenly upon us as our lives are changed.
     
    I know survivors share all those feelings and have many more of their own. No-one has a “private stroke” we are all joined to the world and so siblings, family and friends are affected by whatever happens to us. Jeannie joined us today, survivor of her own stroke and now caregiver to her husband Carl. We have a few survivor/caregivers – what champions they are, I feel so privileged to know them.
     
    Maria is looking for another caregiver chat host. I will do it if no-one else can. But I am sure there are wonderful giving people who can step forward and share some of the joy I have experienced being a host myself. The Good Book says “it is better (more blessed) to give than to receive". I couldn’t agree more.
  2. swilkinson

    venting about falls

    By swilkinson,

    This is a vent so if you don’t want to read it skip to someone else’s blog.
     
    I belong to another site for spouse caregivers. On that site we tend to tell each other the bad things that happen in our day. We are all dealing with spouses with multiple disabilities. Doing so causes us a lot of anxiety and frustration so we understand when another caregiver says she can’t stand this or that behaviour. We’ve been there and done that so we understand. We often feel exactly the same way.
     
    I know it sounds negative to sound off about our partner/care recipient all the time. But remember that by doing it on that site we may be able to stand up to the next lot of difficult behaviour with a smile instead of dialing the nearest nursing home and asking can they do a pick-up urgently. Like all forms of support it is enabling us to go on caring for longer whatever the circumstances might be.
     
    I am having trouble getting Ray to exercise. As I’ve said elsewhere he has put on about twelve pounds since the beginning of December when the diabetic ulcer happened. Because he hasn’t been able to do the standing exercises he usually does he has done no exercises at all. So he has been sitting or lying down, eating really well over Christmas and putting on that extra weight.
     
    Ray has a lot of falls. Sometimes we will have two or three weeks without a fall and then two or three in a week, that was this week. We have Trevor living two doors down so he can still help out by picking Ray up. Trevor is big and strong and seems to pick Ray up effortlessly. He now has a job where he works from 4pm-8pm in a municipal building as a cleaner. Both falls occurred between those hours this week so I had to pick up Ray.
     
    Ray used to be able to help me with the lift using the stronger right side of his body to lift with the arm and push with the leg. This week he seemed not to be able to help me at all. I just managed both lifts but after the second I felt physically sick, so I know I need to rethink how I lift, when I lift and when I call the paramedics. And do I need to lift at all in an emergency, instead of maybe leaving him where he is till Trevor comes home?
     
    Today I asked Ray to do some exercises from an old exercise tape designed for seniors. We have used this one before on wet days. Ray said he didn’t want to do it because it was too hot! I just about blew like a volcano. That may have been because I had been cooking and was a little overheated myself. I explained that I have no intention of killing myself trying to lift him after future falls and he better get stronger so he can help himself. I know he just wants an EASY life, but so do I.
     
    There is no way I am putting him into a nursing home if I can go on looking after him but coping at this level is about my limit so he needs to be aware of that and make an effort to get better and stronger with enough strength in his good right side to help with the lifts. He also needs to know if he hasn’t a spoon they are in the kitchen drawer, his socks are in the wardrobe and if he has “lost” his watch he can look in the bathroom. In other words he needs to do some things for himself.
     
    It is so easy to slip back into “invalid ways”. Can you picture the old Granny or Granpa sitting in the chair rocking while the faithful daughter brought the lemonade out on the tray? She has on a pretty apron and we can hear the maid/cook singing in the kitchen as she prepares the family meal. Well that is pure Hollywood. It doesn’t happen that way here! Sure Ray gets lemonade, diet usually and I do bring him a glass out onto our verandah and sit by him with my own glass while he drinks his. Then I go back inside and go on with the rest of the housework.
     
    How much longer will it be possible to go on looking after Ray at home? Who knows? But I do know it does hinge on him at least trying to do some things for himself.
     
    .
  3. swilkinson
    Ray is home. I got him from the residential facility yesterday morning and remembering past times decided to make it a “do nothing” day.
     
    He sat inside, we both sat out on the verandah for a while, then we had lunch. After lunch he went for his nap on his bed. He got up for his dinner, watched some tv and went back to bed. I fiddled with bits and pieces around in the house, did some ironing, went out and swept the paths and gathered up the leaves the wind had brought down, before coming inside and cooking dinner…my version of “nothing”.
     
    Today we said goodbye to our favourite Carer. Jeff has been mentioned in a few blogs, he is a great person and a very professional carer. He is kind and attentive, speaks well to Ray, focuses on him and treats him with respect. Every move Jeff makes is to put Ray at ease. I wish there were many more workers like him. At one stage Jeff was our Tuesday and Thursday person but now, due to his own health problems, he has Thursdays off. We will miss Jeff as he has become a personal friend.
     
    Ray is now going to Daycare twice a week so his new Carer Chris will do Monday and Thursday and I will shower him Tuesday, Wednesday and at the weekend. It doesn’t sound much but it takes more than thirty minutes to shower and dress Ray and by the time we have breakfast an hour and twenty minutes of the day is gone. This means I will have to be on time on Wednesdays when I have to be ready for the Daycare bus by 9.20am. On Monday the bus goes north not south so I will wait till the shower nurse is finished and drive him there and pick him back up at 2.30pm.
     
    Ray will still have Ron on Friday mornings for three hours in-home respite but will no longer go to Scallywags twice a month as they require him to walk in. It is a pity Ray will lose touch with this group as they were his men friends, mates, co-conspirators, a replacement for all the mates who slowly, over the years, deserted him. We will still go to the once a month stroke support meetings though and hopefully stay to lunch with some of them and maintain some contact that way. That of course is not as good as belonging to an all-male group, sitting round, telling stories and laughing at each other’s jokes. The male company has been real bonus for Ray.
     
    Because of these changes I may need to change my chat night. I have been on Tuesday nights ever since I started as a chat host 4 ½ years ago so it is a big move to make. But there is no sense in having time off if I spend it at home. I am going to designate Monday as “Me time” and not shop or go to the pharmacy or make appointments for Ray. I am going to work out a program of things to do for myself including swimming or gym. I would like to lose some weight and build some muscle again so I will walk on the fine days too.
     
    I have been looking after Ray for a long time. We have done all the rehabilitation and where he would allow it we have followed up with exercises. Now with his foot problems his fitness is going and even a few steps see him wobbly and sweating. It is such a shame that he is losing all WE (me as the coach) achieved. Today Jeff walked him to the end of the verandah, looked at me and said: “Just back to your seat, mate, you can make it.” I just about burst into tears, it was so sad.
     
    I guess when Ray comes home after being away I see him as he really is. Day by day and week by week I don’t really see the changes. I know I am coping okay or I am not coping okay according to the illnesses or increase in disabilities we are going through. Lots of BM’s making lots of laundry and cleaning = not coping, then when that eases back = coping. Lots of communication problems = not coping, some thoughtfulness and cooperation=coping. Caregivers will understand what I mean.
     
    So it is onwards we go. I once commented on a blog who’s author called it “Onwards and Upwards” that onwards is as much as I can manage, upwards, pushing a wheelchair is simply “uphill against will”.
  4. swilkinson

    here I am...home again

    By swilkinson,

    I had a lovely ten days with my daughter and her family. I was “obedient” and stayed at home and read and relaxed and didn‘t worry about anything. I talked to the two grandchildren before and after school. I ate breakfast, lunch and dinner which someone else had prepared, I watched television and played on the Wii with the kids. Everything was nice and easy to do this time around.
     
    Trevor watered my plants but some of them went “crispy” on a day where the mercury hit 42 (105 degrees). At Shirley’s on that hot day we went to the Municipal pool at 4.30pm with half the population. At least we were all staying cooler together. As the nearest city depends on steel, or used to, and attracted a lot of migrants to the area we were a United Nations all cooling off together.
     
    I told Trev it was okay about the tomato plants and I will replant again when it is cooler. It was a great pity that the tomato plants had just started fruiting but that is what happens when you go away in summer. The rest of the garden is okay, nothing a good drink of water won’t fix.
     
    One bit of sad news I came home to was that my Mum’s step-brother John who lived in Queensland, her only relative outside of us girls now, died last week. He was aged about 74 but had had much sickness the past couple of years and he died of a massive heart attack in his wife’s arms. They gave him a private family funeral, I would have loved to have been at the funeral to represent his only sister and her family but it was too late by the time I found out. I did ring his wife tonight and caught up on all the news, his wife seemed fine but we all know that can change for a caregiver as the reality of the loss takes hold.
     
    I had a lot of phone and email messages so I will work my way through the return phone calls tomorrow morning and the emails tomorrow afternoon. I did miss a few meetings so will have to put in late apologies there too. I try to notify a few people before I go away but don’t want the whole world to know that my house will be empty for that time. I guess I am starting to worry about that kind of thing in my old age. I have just about caught up with the blogs and will eventually write a report. Thanks to all who wrote them, you are my treasures.
     
    Next week Ray will be back home and our life will go back to what passes for normal here. I have had a good break and hope that that will make caregiving easier to cope with for a while. It is true absence makes the heart grow fonder and so in a way I miss Ray while in another way relishing the peace and quiet I hear around me. The crickets are singing, the wind is whooshing and I am not lonely, just happy to be home.
     
    I am having dinner with an old friend tomorrow night. We might take a dip in her swimming pool in the late afternoon, as it will be another hot day. She has finally got back into her pool, the first summer since her husband died seven years ago. She says she is enjoying the water and can’t think what was holding her back. I guess we all change after a bereavement and feel “guilty” about doing things our partners once enjoyed. I think that is the way it was for her.
     
    So…I’m back….did you miss me?
  5. swilkinson

    social doings

    By swilkinson,

    We had a few busy days last week. I wonder why I always think it will be “quieter next week” as that never happens. Some of the busyness was good, like a picnic in one of my favourite spots on Thursday with a few of my favourite people, the Apex40 mob who have always been such great support to us, emotionally in the case of a few of the women and of course the men who built our shower room three years ago.
     
    The sad news is that two members are sick, one with ongoing heart problems and another who is probably in the last few weeks of lung cancer (asbestosis) and although wanting to be with us no longer has the energy required to leave his own home now. It is so sad that we are losing our old friends and I am unable to help because of Ray’s ongoing problems. In the past I would have been the supporter for the two lovely women who now find themselves in the caregiver role.
     
    We also had a barbecue with Trev and Lucas and Tori who was here for the weekend on Saturday night and yesterday after church a BBQ for 80 people for my sister’s 60th birthday. One of her daughter-in-laws expressed how good it was to have our family reconnected to theirs: “it’s as if we have gone from having a family of twenty to a family of thirty”. Unfortunately this does not include my daughter and her family as Sunday lunch time BBQs three hours from home are an impossibility for them as busy Salvation Army officers.
     
    Negative results from both of the “eating events” meant Ray back in high range of sugar readings and consequent uncooperative behaviour. Sugar in his system makes him cranky, wobbly on his feet, causes excessive urination, bad BMs etc etc. It does not matter how much I tell people: “Ray is a DIABETIC” people keep feeding him as they think it is a kindness to do so.
     
    No-one seems to equate kindness with NOT giving him sugar-ladened drinks or passing him that extra piece of cake. Of course if he asks for someone to: “just pass me a slice of that cake over there” (as he did a few times at the party) no-one says: “Don’t be silly Ray, you are a diabetic”. No-one but me that is! Giving sugary foods to diabetics is like bringing alcohol to alcoholics or packets of cigarettes to people with lung cancer. Don’t do it please!
     
    So I am off for a few days down the South Coast while Ray goes into respite. I need the break. I NEED THE BREAK!!!! But today we go back to the podiatrist to see if he can be fitted with the temporary AFO or if we have to wait a while longer. I would have liked him to be able to walk outside again instead of me wheelchairing him all the time but I know he needs the heel to be fully healed before any pressure is put on it.
     
    The rest of my plans for the future are setting about downsizing some of our house full of “interesting stuff”. I need probably to plan to do a room a week, something slow like cupboard cleaning, window washing, curtain changing etc. The dusty rain we get here in summer is a nuisance and the spiders are really busy this year so I will have to allow a week for the outside of the house too. Fitting that in with my every day challenges, doctors appointments etc is going to be a bit of a logistical nightmare but I have to be careful not to overdo things and do silly things like falling off ladders! And I need to fit it all in before the end of daylight saving at the end of March!
     
    My visits to Mum now largely consist of me watching her sleep. She is doing more and more of that. With extreme dementia and at 92 she is without a great deal of energy and her life force is slowing down. I monitor her needs, liaise with staff, just keep people updated with what is happening to her. It is all I can do now. I will have to buy her some new night attire soon…just wondering if she will need new winter clothes or not.
     
    I gave my sister a Flash Drive with 93 photos of Mum I have prepared as a funeral presentation. I hope she finds it therapeutic watching it as I don’t think she might realise how much she has missed out on by not visiting her. It is truly “out of sight, out of mind” and that is not good mentally. Can you be a good mother and grandmother if you have neglected your own mother’s needs I wonder.
  6. swilkinson

    better days

    By swilkinson,

    I finally got a full night’s sleep. Since Ray has had the heel problem he has been sleeping on his back with his foot over a bolster. This means that he snores more and his funny breathing is back. I don’t know if it is actually sleep apnea but it certainly is one of those snoring episodes that goes silent and then a cross between a snort and a shout signals he is breathing again. Last night he slept on his side and all was quiet. What bliss!
     
    I have been really, really tired the past few days, in fact by three o’clock I feel as if I am walking in treacle. So I have been having a nanna nap. But as it is also very humid here I find even that has not made a difference.
     
    On Thursday we went out to lunch in an air-conditioned restaurant. Both Ray and I had a sleep as soon as we got back and I found I slept more peacefully. Yesterday we spent some time in the shopping centre, again in air-conditioning and again I slept better. I have a very old air-conditioner that we rarely use but may have to re-activate that if the hot and humid weather continues.
     
    I went to my dementia support meeting yesterday. Unfortunately it was very crowded and their air-conditioning wasn’t working so it was rather a hot box in there. A lot of the information is repeated in a cycle of teachings and so I have heard it all before but yesterday a couple of things stood out.
     
    The first was something I guess we should all as caregivers know. He said: “If I go to a house and it is immaculate I know the care recipient is being neglected. You can’t dust and give adequate care too.” Hmmm….
     
    The other discussion was along the lines of the emergency care plan that we talk about from time to time. I know Debbie has blogged about this too. He was asked who needed to know about our financials? This was from a daughter caring for her father. He said she needed to contact the bank, insurance company etc and get a list of her father’s financial dealings.
     
    He advised her to also contact any other organisation he had dealings with. This might be simply to list herself as an alternate contact or to arrange to direct debit bills or to establish her right to update details. It is a little thing but better done before there is an emergency.
     
    She could do this as his Power of Attorney. Here you need to list all assets before going into full-time care so if she does it now she will not have to worry if his condition suddenly deteriorates and full time care is necessary. It is another worry off her mind if a real emergency arises and she is inclined to panic.
     
    I don’t have a spotless house; I find chores pile up when I have to do the extra care thing as I have been doing the past five weeks. I am so glad that the podiatrist was able to scrape off the last of the blister skin on Wednesday and Ray is back walking on his foot again. It has been such an extra burden on me.
     
    I know it sounds wussy to whine about such a small thing as wheelchairing Ray around the house but it is cumulative. It also meant more fetching and carrying as Ray wouldn’t wheel over to his table and pick up a pencil, it was: “Sue, I haven’t got a pencil, could you get one for me?”.
     
    Ray is not allowed to put shoes on for another two weeks as the “baby skin” on his foot needs to harden before it takes any pressure. There is to be a temporary soft brace and then eventually another custom made AFO. It is all to ensure that there will not be a repeat episode. I hope not as I certainly wouldn’t want to do this often. I was so scared that it would result in gangrene and an amputation.
     
    I think the fall I had on Sunday has also been a contributing factor in my not sleeping as my old relaxation method didn’t seem to work. I am usually able to relax my body but this past week still had so many aches and pains in shoulders and hips caused by the bruising etc. The good thing was I had plenty of time to work my way down my prayer list…lol.
     
    I know…that woman always has something to complain about….
  7. swilkinson

    space walking

    By swilkinson,

    I had a fall on Sunday afternoon. I had climbed a step-ladder to put away the last of the Christmas decorations. I had a box in my arms to put up and for some reason I looked back on the bed and fell into space. Came to with a lot of pain down my legs, a bump on my head and completely winded. I thought of yelling for help but knew my next door neighbours were out, Ray was sound asleep two rooms away and couldn’t help me anyway. So I managed to get to my hands and knees and crawled out of there.
     
    Thank you to all who saw my message on Facebook and replied. I did have a phone call from a dear friend who said: “Ring me. I will come!” and reminders from others that I should keep a cell phone with me or some means of getting help if it happens again.
     
    I fall very rarely, so I get complacent and think it never happens. Today I can feel that it did as I feel like one of those stick figures in kid’s drawings, as if my arms and legs are sticking out at odd angles. I guess I will have some bruising show up in the next few days but am so grateful it was not a heap worse. Imaging broken bones, like hips or legs or even an arm and trying to push Ray in the wheelchair – I shudder to think about it.
     
    I did attempt a quiet day and it mostly worked. I did have Lucas this afternoon, with Trev working late in the afternoon and Edie working various shifts there are going to be times when they are both away so I will help out where I can and Edie’s Mum will do the same. We want them to be able to save money for their wedding next October and this is one way we can help out.
     
    I enjoy having Lucas here. He is full of young ideas. I enjoy supervising him jumping on the trampoline, watching old kids videos, even his endless questions, at least it is some bright conversation. It makes a change from the quieter life Ray and I seem to live now. He isn't a lot of trouble, always eats his meals etc, he has a sweet tooth but what kid doesn't? Of course he does try and cajole sugary treats out of me but years of curbing Ray’s sugar intake have made me strong and I can stand up to him…lol.
     
    It has been a fairly good day today. I am stiff and sore from the fall but the pain is bearable, it could have been so much worse. I must work on my emergency care plan again. I will have to look for the old post and maybe do another post using the information on it. We all need to have a workable plan for the “what ifs” in our lives.
     
    I’ve just done the blog report and was reading Asha’s blog on how she reacts to appreciation and criticism and realise I am the same. If someone says something nice to me I think: “they are just saying that to be nice, they don’t really mean it” but if they criticize me right away I think: “how dare they. Look at how much I do for Ray, how can they be so cruel…so inconsiderate.” And that plays on my mind for days. I need to learn to just acknowledge and move on.
     
    I am always touched just by the fact that people comment on the blogs. It means they actually read them and then sit down and write something appropriate, encouraging, praising, appreciative, giving out wise words and useful information. Sometimes some small comment will lighten the load and uplift the spirit of the blogger. It is a most beneficial and generous act on their part. So thank you, thank you, thank you to all who post a comment. It is so good to be among friends.
     
    I am sorry that some of the people who searched for their blog and finally updated us on their happenings then let them lapse and forget about blogging for a while. It means we miss out on the next exciting episode. I guess some of us are more garrulous and out-going than others.
     
    Or maybe writing a blog is a way of reflecting on your life once you have been space walking…lol.
  8. swilkinson

    some updates

    By swilkinson,

    Today was a busy day, as we had our six month's visit to the neurologist this morning. I wish I was not so tired. I am not sleeping well and am more tired than usual, probably the humidity.
     
    I shouldn't complain, with all the vision of the dreadful Queensland floods and the death and destruction there streaming onto the TV news on all channels this morning I feel as if my troubles are small. Compared with those folk I have it easy.
     
    After we saw the neurologist this morning, he had the nerve conductivity test done on Ray. Ray does not have peripheral neuropathy although that was thought to be one of the causes of the diabetic blister. So why does he have the blister? In the neurologist's opinion it is the diabetes of course. But he did point out that the blister does seem to be reabsorbing nicely. And he will give Ray a referral to a vascular surgeon so the arteries in his legs can be checked to see if there can be some improvement made there.
     
    The bad news is this morning the shower nurse left before I got back from my walk. I stopped at my son's house to tell him my sister broke the toilet window, one of the bottom louvers. So when I rang his boss, the Case Manager, she was "upset" Ray had been left on his own. Oh really???? Well me too. Of course there were lots of promises that this will never happen again.
     
    I broke down and cried in the neurologist’s office this morning when he asked Ray if he was depressed and he answered: "think so". He then asked if he sometimes thought life was no longer worth while and he answered: "a lot of the time". I'm guessing he will recommend that our doctor starts Ray on an antidepressant.
     
    He probably thinks that I need antidepressants as well. I don't really, I am fine most of the time. But when people finally "get it" then the tears tend to come to the surface. Particularly as he then asked how our family deal with all of this and that is a sore point with me at the moment with the presents still under the tree for our older son to come and pick up. His kids missed out on the family time and what can I do about that?
     
    Am I dealing with this well? I think I was doing well before Christmas but since having to use the wheelchair in the house and having so little time to myself because of the Daycare team etc being on holidays and time off in short supply, maybe the answer is "no". Luckily it is only one more week and they are back again.
     
    The neurologist said I should have Ray in Daycare two days a week now. I said I was considering another option and he said to keep Ray where he is familiar with the surroundings, and where the staff are familiar with his needs. I guess that is good advice so I will see if Daycare can give him a second day at this stage.
     
    The neurologist also suggested I use one day for visiting Mum etc and make a list of things I might like to do on the other day and suggested a massage, a trip to the movies and maybe some other treats I may have been putting off for a while. I wouldn’t mind a lunch with a girlfriend from time to time as I know how that can cheer me up. I just have to put it into place. It is strange but someone giving you “permission” to do something for yourself does help. It is almost as if he wrote me out a prescription for “me time”.
     
    Tomorrow is an easier day, some housework and then Caregiver Chat and minding Lucas some of the afternoon. Trev has a small part-time job, four hours a day relieving a cleaner for the month of January but of course Edie is a shift worker and is doing evenings this week. It never meshes well doing two jobs in a family and having an 8 year old too. GrannySue to the rescue.
  9. swilkinson
    I always blog when I have thought about an event and the impact has lessened. It is horrible to start a blog with: Ray might lose his leg. But that was the bottom line of our appointment with the podiatrist yesterday.
     
    The podiatrist did a lot of tests; we were with him for an hour and twenty minutes. He started off saying he could lance the diabetic blister on Ray’s left heel and finished up saying he couldn’t. Ray’s circulation is weak in both feet, a result of the diabetes not the strokes. But the strokes have contributed as his mobility is so poor and he doesn’t exercise enough to make a difference.
     
    We had an appointment to see the orthoptist, the man who actually makes the AFO (ankle-knee orthoptic or leg brace for those who don’t know). He talked to us and said the situation was bad he kept repeating this until I wanted to scream. I do know poor circulation plus leg ulcers or an infected diabetic blister equals amputation.
     
    Then he got the podiatrist to come in and they said they will form a team to oversee Ray’s care and I could see the podiatrist in two weeks time and the orthoptist if I needed to. The podiatrist gave me a dressing to put on the blister if it bursts and said to ring and ask for him rather than just going to Accident and Emergency. We talked briefly about seeing a vascular surgeon if we needed to and it was over for this visit. I was devastated, Ray was unaware of what we had discussed as usual.
     
    I know there are some things in life you can’t control but I am in the habit of banging my head against the current brick wall. It is my Irish bravado and my Scottish stubbornness. I can never give up without a fight. It is the only way I can handle things. I emailed Debbie and she sent me a “wait and see “ answer. That is the right thing to do. I need to just let nature take it’s course and things might work out okay.
     
    So I am confined to barracks more or less for another six weeks. For Ray that is okay while the sun is shining and he can go out on his verandah in the morning and do his word puzzles. It is me that will miss going out, our plans for the beach and the picnics by the lake etc all out the window now. But whatever will be will be.
     
    I have tentatively booked some respite for Ray in February, I figure by then I will be climbing walls. It is only the usual two weeks but by then I might be needing a time in an asylum, if there is still one of those around. I could quite easily go mad with just Ray and me and nowhere to go. All the respite places he goes to are booked up till then and I didn’t want to put him in somewhere he hasn’t previously been.
     
    I have been worried about Ray and so haven’t really been paying attention here as much as I usually do. I apologize to anyone whose blog I haven’t commented on, or whose post I have failed to answer in my usual way. I do love you and pray for you but my mind has been trapped here for a while.
     
    I have told our three children, I told them of the possibility and the present reality. It is all I can do and then “wait and see”. I will mourn my lost summer when all of this is over
  10. swilkinson
    What is a New Year without Resolutions? Here it is the 2nd of January and I am sitting down to make mine. Well okay, these aren’t mine. I was talking to a friend at church today and they are his: healthy, wealthy and wise.
     
    I asked him why he had chosen these three words and he said he had had a suspected heart attack so had a few specialists appointments to get a general health check and had also made an appointment with a dietician to get some idea of what he should and should not be eating. He said he wants to live a few more healthy retirement years.
     
    I asked him about wealthy and he said he had made a few wrong decisions and found himself without money just before Christmas. He said for that reason he had volunteered to go to a local charity event and feed the homeless as that meant he didn’t have to cook a Christmas dinner he really couldn’t afford. Wow, for someone relatively well off that really got to me. It is so easy to spend more than you really should around Christmas so it is his plan that this year he will not make big purchases in the later quarter of the year so he will have more money available for Christmas.
     
    And wise I asked? Yes he said: “I’ve stopped talking to God and those around me about what I am doing. I didn’t seek advice and get some tips, so I bought a more expensive entertainment set-up than I could afford, not the best value for money.”
     
    From my point of view healthy is important. I am always posting little snippets of advice for others, I also have to listen to them myself. So when I tell one of the caregivers to take more “me time” I have to do the same. When I tell them to “get a good night’s sleep” that counts for me too. I need to let others know my needs and make sure I get some of them met – even if I have to take some of my “free time” to get a massage, go to the pool and exercise, or go for a walk on the beach. My health is important. It is important to me and important to Ray. If I am not in good health it is harder to look after Ray. If I can’t look after Ray we will suffer financially.
     
    I am already wealthy. Not in financial terms although we have enough to meet the majority of our needs. I am wealthy in friends, support and care. I do have access to subsidized care for Ray, only five hours a week but that is better than nothing. I do have access to other services through the package for pensioners the government provides. I know we have better access to health care here than in a lot of other countries, So we are wealthy in having what we need to live a comfortable life.
     
    And I wise? Yes I am and the more I listen to others and seek answers among those who have been through what I am going through, the wiser I get. So thank you to all who contribute to my posts, comment on my blogs, post information I need or simply share their own experiences here. Your wisdom contributes to my wisdom and indeed makes me wise.
     
    Because I am healthy,wealthy and wise I am able to direct my energies where they are most needed. I should be better able to adjust to different circumstances. It is hard when something like the diabetic blister on Ray’s heel necessitates him having to be in the wheelchair even in the house but I should be able to adjust to that. It is not forever, just 6-8 weeks. And if I ask for extra support during that time I should not get to feel like a prisoner in my own home. I should manage to get out enough to combat that.
     
    We who are on the stroke journey as survivor or caregiver have a harder road than most of follow. But we are overcomers not losers. We have had the opportunity to stretch ourselves and grow that we wouldn’t otherwise have had if we had had work dominate our waking hours. And here we have companions on the journey so we are not alone. So if you have not made resolutions why not take mine and see yourself as healthy, wealthy and wise?
  11. swilkinson
    The season of good will is over for another year. We had two close encounters with cars on our way to my sisters around noon today, both cars forcing their way into traffic where they should have waited. The season of summer selfishness has begun.
     
    We did have a good Christmas Day though. We went to church at our usual time and then off to see Mum. She was mostly asleep so we only stayed a short time and then came home as planned. We had some morning tea and I got us a great lunch, seafood done as a Mornay with fresh salads, followed by fresh fruit salad and Ray had ice cream. Ray had an afternoon nap and I watched an old Christmas movie as you do Christmas afternoon.
     
    Trevor came over with the pork roast about 4.30pm. By then I had cooked caramelized vegetables to go with the roast beef and chicken I had cooked earlier. We were just sitting around chatting and I heard a familiar baritone singing Christmas carols out the front. Our son-in-law, daughter and family had surprised us, arriving at 5.30pm after having done a Christmas service in the citadel at Shell Harbour and had lunch with his mother and brother in Sydney.
     
    We had a lovely evening meal, nibbles first and when Edie arrived back from work at about 8pm we had an evening meal. The kids who had been eating all day, only had to have some meat and then were allowed dessert as Christmas brings special privileges. It was lovely to find out Shirley and family planned to stay overnight. They left to go south again after going to church with us this morning.
     
    We all have good days and bad days, I have to admit to that too. Because of Ray’s health worries I feel as if life is getting me down again. It isn't as good as I'd like it to be right now. Ray has the bad heel, he is likely to continue to have vascular problems caused by diabetes, the doctor says there is nothing we can do about it. He might not heal; he might lose his leg etc. I get so tired of supporting him in all of this. I really just want to walk away from it but that is not fair to him. We said for richer, for poorer, in sickness and in health.
     
    After church we went to my sister's place, a lovely five bedroom home set on an acreage. We went with our younger son and his family, our older son was also there. He hardly spoke to us. He and his family didn't come to see us yesterday for Christmas Day. He seems to want to separate himself and family from us. Both our sons were raised with love. I wonder what happens to that love, does it fade and die in some people?
     
    My sister and her family gather on Boxing Day each year to celebrate together. There is always lots of food and laughter. Our nieces and nephews and their families all treat us kindly. I guess they have their own lives and don't think of us much but always seem glad when we appear among them. Surprisingly they are all church going families. They have interests like music and community building. I would say on the whole that theirs is not as devoted a generation as we were to values and family etc. But I guess they are the exception as is Shirley and family. I think Trevor and Edie have the same potential.
     
    I have been brooding about the apparent lack of interest in us of our older son and his family. I love all my grandchildren but I can’t mind the little boys. I’ve blogged about that before. So of course we are not useful to them now. I have to get over all of this as I can't afford to carry a load of bitterness as I need to use all my energies on Ray's health issues. The family problems will have to resolve themselves.
     
    Sometimes I wish there was more I could do to solve the problems of the rest of the world but I can't even manage my own.
     
    My sister gave me a nice surprise. A picture of the two of us aged 15 and 18 ready to go to a ball. Of course the photo was black and white but she remembered her dress was blue background, white polka dots with a blue satin sash and mine she thought was pink but I remembered it was apple green, Empire line with a tiny train as it had formerly been a bridesmaid's frock, a friend gave it to me.
     
    Those memories of happier times sustain us when the going gets tough. We are lucky to have someone share them with us to remind us that we were once much different to what we are today.
  12. swilkinson

    just get over it

    By swilkinson,

    “Get over it” how many times have you heard that? Or maybe you have said it, to a child, to a spouse or to a sibling: “Just get over it!”
     
    We went down to visit our daughter and her family on Friday; we were to be there for six days and come home on Thursday. We went with Trev, his fiancée Edie and her son Lucas. We had a good easy trip down and were greeted with love and we had a lovely two days. On Saturday we had a meal fit for a king as my son-in-law is a mighty fine cook, his brother is a chef and he has passed on a lot of tips and so the food was melt-in-your-mouth, wonderful food.
     
    Our other family were supposed to come, had said they were coming but didn’t actually come. It is a long story, you know what families are like sometimes, can’t co-ordinate their dates. So the rest of us got out the gifts and exchanged them and it was really nice to see the kids’ faces light up as they always do. Funny thing is a $1 set of paints was the hit of the day and several kids and a couple of grownups did painting as their after nap activity. Isn’t that always the way? You can buy absolute treasures but it is something commonplace that satisfies.
     
    Ray had been off color for a couple of days and on Thursday the shower nurse pointed out that his left foot didn’t look good around the heel so we left his shoes off all day and it looked better on Friday. But just to be on the safe side I did take him to the doctor who declared it the result of diabetic neuropathy which we know Ray has as a result of his strokes and 20 years as a diabetic.
     
    The problem seemed okay on Saturday and it did not look so bad when I gave him a shower. It was difficult to shower him in a tiny recess with no hand bars or anywhere really to stand. I managed but I must say with my teeth gritted as I showered him with a Tupperware jug in one hand and a bottle of shampoo in the other. I just managed and that was all. So Trev went out to a hardware store and came back with a shower head on a flexible hose and fitted it, bless him, and Sunday's shower was so much easier to do.
     
    We farewelled Trev and family on Sunday morning as Edie had an evening shift that night. The rest of us went to church on Sunday to see the young people do most of the service and our granddaughter played in the Junior Timbrels and with the biggest smile on her face. This time there were cakes and slices as well so Ray really tucked into them. It was a wonder he could fit in the lovely lunch, but he managed.
     
    We had a little nap and then back to the Corps for Christmas Carols and a sausage sizzle with the jumping castle inside as by this time it was raining. Neighbourhood kids came and went, jumping, eating and enjoying it all. It is great that with a little outlay you can give them such a great time. The Salvation Army is known for their work among those less fortunate and this was a great example. Long may it continue to happen.
     
    We were looking forward to the rest of the week and the excitement they had planned for us but Monday morning when I went to shower Ray I noticed he grimaced as he walked and seemed to be walking on tippy toes and then noticed a great blood blister hanging from his heel. Panic stations, as visions of gangrene and surgery and an amputated leg flashed into my mind.
     
    The short version of what followed is that we all agreed we should come home, that day, as soon as Shirley had organized other people to take over her Monday and some of her Tuesday activities. So we did come home, driving through Sydney traffic with a lot of the intersections manned by police officers as traffic lights were out due to a big wind storm the night before. We went straight to the doctor and he said the same as he had on Thursday, diabetic neuropathy, no medication, no cure, maybe a future appointment with a vascular surgeon and for now bed rest, painkillers and an ice pack if needed.
     
    I have had a lot of loss in my life and this was just one more, loss of time with my grandkids. It somehow cut me to the heart and this morning I was crying as I remade our bed yet again because Ray had had an "accident". Ray told me it was all my fault, as he usually does and I should “just get over it”. And I suppose I will, as I have all the other losses and disappointments. But for now I want to just have some time to myself. I need that to get over something like this.
     
    And so what happened today? I was asked to mind my older granddaughter. I suppose that helped, as at least I was able to enjoy her company for four hours while her parents bought last minute Christmas gifts without the children present to see what was being bought. Lukie came over for a while and we played golf on the Wii, a game in which he is the champion and I am the chump. I guess it all helps to alleviate some of the pain. But I’m human and can’t always “just get over it” that quickly.
  13. swilkinson
    I am so thrilled. Ray came back from his extra Daycare session, the first “Christmas party” for the week (yep, their week starts on Wednesday) and he has a yearbook created by the staff with the help of some friends and supporters and containing one photo for every month. It is a real work of love and I am so pleased with it I thought I would share it in a blog. But then golly gosh it has just taken me almost an hour to scan three photos and create an album here to attach to this blog. I guess I am a technomoron today!
     
    How do we describe what excites and thrills us? How do you describe an act of kindness or a pleasant day or a triumph of the spirit? It is so easy to post on our bad days, to moan and groan and vent and have an attack of the “poor me”s. But how wonderful it is when good things happen and as Jan is always saying, our spirits soar and we feel like flying with the angels and singing out “hallelujah” to anyone who will listen.
     
    So hallelujah folks, hip, hip, hooray for the men and women, paid and unpaid who provide the Daycare service for Ray and others of a similar need to attend. Hurray for the entertainers, the helpers, and all who provide the food and necessities for the physically and mentally challenged people who attend – bless them all.
     
    I had a strange day today. I think I am so tired now my brain is in neutral and so I spent half an hour looking for my purse, keys etc, then drove to the shopping centre without my list and no idea what I needed to buy. By then I had an hour even to get six Christmas presents, three gift cards and some more stamps, to call back at the pharmacy and get four scripts made up etc. Well, I did most of it so I hope it is all successful and they like the presents, appreciate the money etc.
     
    Then I dashed into chat and we chatted as usual for the hour and a bit. I could tell my girls were flagging in energy too, they seemed less outgoing tonight. This season takes a lot out of us, caregivers and stroke survivors alike and so we do as much celebrating and socializing as we can but it takes a toll. Partying is for teenagers and that is not what we are now…lol.
     
    I am looking ahead to our time away down the south coast with our family. Hopefully this is a time to establish a new tradition – Wilkinson Christmas. It seems our other son and his family are also coming now, not sure how or when but definitely coming down. So we will have the family photos and the happy sharing…well maybe, we have all the expectations of it all working out anyway…as long as we are people of goodwill…
     
    Ray is snoring. The combination of the hotter weather, the still humid nights and the party season are really making him tired. But so far he has been happy and we haven’t had any major breakdowns…oh such a good thing that is.
     
    We are off to sell tickets in the Christmas stocking for the last time tomorrow. It is drawn on Christmas Eve and one lucky person will receive the contents, all $3000 worth. The ticket buyers say: “I don’t know what I would do with it if I won it”. Me neither. Get the family in, give it all away; donate it to the Salvation Army? Probably a combination of those things would be best. It is always good to remember that there are a lot of people worse off than us. Cold, poor, needy, homeless, or lost, lonely and without much hope, as Jesus said: “the poor are always with us.”
     
    And the letters that have come with the cards updating us on family doings of near and more distant friends have cheered me up tremendously too. It is SO GOOD to hear that they are well, have more grandchildren, have finally had that longed for trip overseas. Yes, of course I am jealous, just for a second, before I think this is what I would want for them, these precious friends of mine, to be happy, to be fulfilled, to have some of those things they have been putting off till retirement.
     
    Tomorrow I will also see my dear old Mum, God bless her. And God bless all of us too.
  14. swilkinson

    renewing friendships

    By swilkinson,

    Friendship- I often say I have no friends but of course it is not true. I have kept friends from every part of my life. From my time in England I have the cousins who write to me at Christmas and the granddaughter of the old man next door who writes, rings and home hosted Ray and I in England in 1994 and 1998. She is a long distance friend who I cherish and long to be with again.
     
    Tonight we had a phone call from an old friend from my pre-teens, inviting us to dinner with them at a local club. I was there with Ray and my temper intact at 6.30pm. Okay, I am taking a bow here and awaiting your applause. Only one hours notice and we were there - a remarkable feat in my eyes. These friends bring me back memories of a difficult time in our lives, my Dad building our house, having barely enough money to live on, vegetables from the garden and eggs from Mum’s hens being our main source of food. Being invited to eat at their house was such a treat for me then.
     
    I have kept in contact with friends from my school days, from Infants, Primary and High school, which was the way school was ranked in my time. I have one friend who I have known since I was seven and just love it when the phone rings and it is her. We can almost finish each other’s sentences we were once so close. Sadly it is months sometimes before we are in contact. Such is a caregiver’s life.
     
    I’ve kept in contact with old neighbours and friends from each of our stations in Fisheries, old work mates of Ray’s and their wives, friends of our kids from school and Scouting, all the major sections of our lives. I’ll keep up the contacts as long as I can, I don’t need them to always understand me as long as they accept the validity of the situation I am in.
     
    BUT…who are the friends I value most now? You all know the answer to that. The ones who understand about Ray’s strokes, the ones who don’t expect us to be at their beck and call, who don’t suggest we meet them in places that are not wheelchair accessible etc. I know you should not let the strokes dominate your life but the deficits from the stroke demand that certain criteria be met before we caregivers get to relax and have a good time, don’t they? Unlike the “disabled friendly” restaurant we went to where the bathrooms were up a flight of stairs and I was there with Ray in a wheelchair!
     
    Today we were asked to look after our grand daughter. It was our pleasure as she is fun to be with. She has ten stitches in her knee as a boy was teasing her and she lunged forward and tripped over a grate and that was sufficient to give her a deep cut requiring stitches. She asked me who the cards I am writing were for and I told her about a lot of people who have been a significant part of our past who we still try to keep in touch with. Every card I write I send with our genuine love and every card we receive has a story behind it, even if there are no words in it other than “love from” it still means they are alive and alert enough to send a card to the right address.
     
    I still try and keep up with a handful of Mum’s old friends as I want them to know when she passes. It is such a long time now she has been in care, nine years now, that I am sure there are people she once knew who think she is probably already dead. So I want a small number to know she is alive and in what circumstances.
     
    I send a short cheery letter with each card. I don’t tell the recipient about the bad BMs, the chest colds that went on and on all last winter, the way I feel about Ray some days and how close he is to being too much for me to cope with. Instead I have a sentence or two about each family member and tell them Ray is healthy and stable and I am coping okay. Which basically is true today but may not be true tomorrow.
     
    I appreciate the friends I have made here. It is nice to have people I am in constant contact with, who do understand and in many cases have been here done this. It is nice that I have had some friends here for the 5 1/2 years I have been on Strokenet and some who have only recently entered my orbit but have become good friends in a short period of time. In particular I want to thank my chat group for their friendship and support.
     
    Christmas time is largely advertised as being about family, gift giving, presents under the Christmas tree. It is depicted as being about people seated around groaning tables ladened down with Christmas goodies. But to me it is about renewing friendships too.
  15. swilkinson
    On the 9th of December 1990 my husband Ray had a stroke. It was the beginning of the journey we are still on 20 years and counting.
     
    It was the beginning of a two week vacation. We had spent a couple of days traveling north to visit Ray’s brother. We had Trevor with us, Trevor was 15 at the time, our last one at school and so we said he could get out of school a couple of weeks early to come with us.
     
    The morning after we arrived Ray’s brother asked him if he could repay a favour for him. A friend who had helped with some renovations wanted a cubby house built for his daughters as a Christmas present so Les had said that his brother Ray, being a carpenter, would build one for him. So they set off to first measure up the project and then drive to town to get supplies.
     
    The day was hot and humid and in those days no-one gave dehydration a thought. I was home at the BIL’s place and answered the phone when it rang just after lunch. The voice said she wanted to speak to: “Mrs Wilkinson from New South Wales.” I said that was me. She said: “Find a chair dear I need to tell you something”. Then she told me my 48 year old fit husband had had a stroke and was currently on his way to hospital in an ambulance.
     
    I thought she meant sunstroke and asked her if she did. She said: “No, it was the real thing.” and that was the first I ever knew that someone young and fit could have a stroke. When my BIL arrived home he said we should go to the hospital to fill in forms etc. It was a 45 minute drive and seemed to last twice that. We finally arrived and I found Ray looking much as usual but slightly lopsided in the face and he seemed to be having trouble with his left hand. The next news that astounded me was that he was a diabetic!
     
    And so Ray was in hospital for just six days while they adjusted his diet, gave him some diabetic medication, showed me how to check blood sugars. Then they discharged him to come back home to our own state to our own doctor for advice on what to do next. It is unbelievable looking back that because each state was funded differently I was not allowed to even bring back the initial xrays and CT scans.
     
    Our own doctor was shocked. Ray was too young, was fit, not overweight, maybe overworked and of course should have been relaxing on his holiday, not working off a debt for someone else! So it was put down to dehydration, a thickening of the blood and undiagnosed Ray and the medication for diabetes etc was all that was needed.
     
    Ray actually went back to work six months after that. He was able to walk properly and use both hands. That was due to working with the Commonwealth Rehab unit operating especially so that people like Ray with slight strokes, or who had survived car accidents who were still young could get some help in returning to the full time work force. And Ray did! He actually returned to work for 8 ½ years.
     
    But of course he had not changed his behaviour. Indeed there was never a suggestion that he had to do so. The stroke, unexplained, was supposedly a one-off that would never be repeated. The behaviour, working too hard, missing meals, not drinking enough water in hot times would later come against him again. But for now the doctors and specialists who had seen him said: “It’s over, you are well, go back to work.”
     
    Which did not prepare us for the two strokes in 1999, the one in 2001 or the one in 2005.
     
    And I became a caregiver in a sense right back then as Ray had massive fatigue issues and would come home from work, drop into a chair and be asleep in seconds, he also slept a lot at weekends. So I took over a lot of things he had been doing. I also went back to studies and got an office management certificate, a new piece of paper to help me get a job. My thinking was that if it happened again Ray could stay at home and I would be the breadwinner.
     
    Neither of us knew how debilitating Ray’s two strokes in 1999 would be and that it would retire us both, me to look after him. How different is a slight stroke from those that leave deep and serious brain damage. They can change your whole life and the lives of families and friends and all who are in contact with the family concerned.
  16. swilkinson

    a slow day

    By swilkinson,

    I had a slow day today. I didn’t intend to, it just happened. A slow day is like those road bumps that slow you down and give you a chance to look at the scenery for a change.
     
    I meant to go see Mum, go to the dementia support group, do some shopping etc…the busy Sue day. But instead I realised the Market Day was on in the lounge area of the nursing home so went there first. I met up with two of a trio of ladies I called the three musketeers, ladies with husbands with dementia who all visited the same day. They are all widows now and had come over just to meet up for lunch. The two I encountered were delighted to see me and suggested we have morning coffee and cupcakes together; an hour stretched to almost two before I finally went to see Mum.
     
    Mum was droopy today, like a jellyfish. I went to the nurses station and asked them to put her into a wheelchair (she is two person assist) and then took her back to the fete where she met up with some of the girls who used to look after her at the Lodge, lovely to see her smile when she heard familiar voices. The aides do miss those who transfer to another section and it was good to see her flicker of recognition of a couple of them.
     
    I also took her out in the grounds for twenty minutes or so of fresh air and sunshine. She turned her head when she heard parrots in the trees and once when a car went by quite close to us. It was good to see some reactions from her as she shows very little interaction with reality now. She is not able to communicate in any way recognisable now. It is so sad, she is such a dear little thing, now so tiny and vulnerable.
     
    Then I went shopping, bought myself some lunch and had another coffee. Slowly did some browsing around. Funny how some days can be like that, no worries, no particular cares, just a day of leisurely activities. And the shopping centre was full of people feverishly shopping and that didn’t at all affect my enjoyment of the day.
     
    Ray had a finger food lunch at his Scallywags group this afternoon. This was the last meeting for the year so they had something special. The WAGS (stroke support group) party is tomorrow 11am – 4pm so there will be good food and conversation and FUN. There is always groups of women dancing too so I will join in and not worry about what I look like back view…lol. Most of our men folk have trouble just standing so dancing is not usually an option.
     
    It is a strange time, this time before Christmas in Australia. It is, the end of the working year, the end of school for some, the end of year for groups, and the final meetings. There is about six to eight weeks before most groups start up again, so anything can happen in that time. Summer has a certain insecurity about it too as in some cases by the time we get back together some people will have changed in some ways.
     
    This was our least busy week, next week is full and overflowing and the following week is too, but hopefully we will both have enough energy to see through all we have to do.
     
    I have the Christmas cards almost done so if you want me to send you one you had better send me a PM with your address…lol…before it is too late.
  17. swilkinson

    busy days

    By swilkinson,

    I hate Sundays that turn out to be work days. We have been so busy that somehow this week I didn’t do enough laundry and realised that some of the clothes we needed for early in the week had not been laundered. So did a couple of loads of washing before going to church and a load when I came home and now have a full ironing basket to deal with.
     
    I did Sunday school this morning, only four little folk and a fairly complicated craft so enlisted the help of the Mums and we managed okay. All Christmas crafts this time of the year so they have a heap of work to take home with them. Finished up of course with glitter and spangles all over the place so after I came back from the church part of Sunday school I swept the hall out.
     
    Yesterday it was church fete, Trev’s birthday party and then Ray went off to the Mens dinner. The Fete worked out well, Steve “forgot” to drop Tori off so I took Lucas who is very good at spending money so we gave a large contribution (lol) and came home with a lot of interesting stuff. Edie was thrilled with the earring and necklace set he bought her, especially as he picked it out, got my approval and purchased it with his own money.
     
    The lunch was nice but the restaurant was more expensive than we had thought so we were all a little short on cash for that. Still it worked out well in the end as the kids were all as good as gold, both our grandkids and the new “cousins” from Edie’s side of the family. Her Mum was sporting a nice new look, blonde and a short curly cut that really suited her. She seems a pleasant person, glad we are getting a nice “in law” family.
     
    I dropped Ray at the Men’s Dinner and my co-worker from Sunday School dropped him home which was really good of him. I often complain that I don’t get enough help so really appreciate it when someone steps forward and helps. It was nice this morning when a few of the men came up and said how good it was that Ray could be there, so a good all round result.
     
    We have reached the noisy season where the BBQ’s and parties are all outdoors, all have the stereo turned up full blast so they can hear and so can the entire neighbourhood. We suffer a lot from that here. But after a while someone rings the police about the excessive noise and a patrol car comes around and the noise fades away. A hotel about a mile away has live bands outside Sunday afternoons and I can clearly hear the words on most numbers. Not songs I’d like to hum along to I might add.
     
    Now all the parties are in full swing we are experiencing some tiredness in my case and some extra confusion and disorientation in Ray’s case. This means we have minor squirmishes as he forgets what I have told him and we go into the “you said. I said” kind of arguments that never end well. So I have to be far more precise with instructions and try not to snap at him when he is obviously resisting what we need to do. On the whole it is all manageable but it is harder year by year now.
     
    This coming week is a very busy one so apart from my blog report I will probably not have a lot of input on the forums. I have chat of course but that is always a permanent marker so just work around it. I enjoy it too; it is part of the support network I cherish.
     
    No family news from outside the usual circle, I did ring one of Ray’s sisters though as I wanted to confirm some news. I need to start sending Christmas cards soon as people need to know that we are well and Mum is alive and kicking – if not fully functioning. I suppose some people still remember us, even if they don’t bother contacting us.
  18. swilkinson
    The harder you work the luckier you get. I don’t know who wrote that but it’s true, whether you are a young family, an old couple or a middle aged combination of parents and grown children there is always a lot of work to do in any household.
     
    It is Spring>Summer>Christmas season here. We don’t have Thanksgiving so as soon as our Labor Day weekend is over (second weekend in October) everyone starts planning for summer. This year it has been a little slow coming but the cicadas are singing today and the birds are playing chasing games so I guess that means it is Spring and Summer is on it’s way. Yahooooo!
     
    On Saturday I did a lot of gardening. The back yard was looking weedy and seedy (no winter snow to kill off the weeds) and so I tackled it as much as I could, weeding and watering and moving plants in their pots so they showed to their best advantage. I finally got a bromeliad flowering that isn’t red, purple or pink; I’ve got a yellow one. Okay it is not the prettiest flower in the garden but it is what I wanted. Hope it throws “pups” so I can have more flowers from it next spring.
     
    After a very tiring Saturday I was prepared for a quiet Sunday with an afternoon snooze fitted in there somewhere. Wrong again. As I was half way through preparing a simple lunch I got a phone call, my sister and her husband were about twenty minutes away and could they come here? Okay, I put on a few more vegetables and hoped the meat would stretch to feed four. Not a lot you can do with visitors that come at short notice is there?
     
    My sister is good company when she is in a good mood and fortunately Sunday was a good day. She talked for about three hours after lunch while Ray and her husband Tom nodded away in armchairs, lulled to sleep by their spouses’ voices. It was a happy visit.
     
    I’ve finally given up trying to change people. It was taken me 60 years but then maybe I am a slow learner. If people tell me white is black I will concede it is gray in a certain light. This has partly come out of behavioural management training (don’t argue if you want peace) and partly out of a mellowing as I’ve aged. I don’t have to be right all the time, I can be happy in my own mind even while someone is telling me I am wrong.
     
    It is a busy life from now on, with the parties, end-of-year happenings etc. That is okay, Ray seems relatively well and I am too so we should be able to manage. I have asked for help on a couple of the outings. Trev can’t take Ray to the church’s Men’s dinner so I will take him and my co-worker from Sunday school will keep an eye on him and bring him home for me. With another gathering I have asked if it can be at a friend’s house as I know she loves to do afternoon teas and will enjoy having the company. It is a win/win situation.
     
    I did manage to go to Dementia support on Friday and was glad I did as the mentor there occasionally gives us an insight into behavioural issues that are useful elsewhere too. He was explaining separation anxiety and how it applies to putting someone into respite and full-time care. He explained that it is little doses of absence that help. We know that don’t we, with raising our kids? Out of the room, come back, out of the house, come back, out of town, and come back. The building of trust that says: “I’ll always come back, you know that.” Of course the way dementia works can sabotage that but it still applies to a certain extent.
     
    When I explained that Ray is more and more silent now he just nodded. He knows I have handled most of what has come my way so far so he doesn’t need to pay an urgent home visit or call in a social worker to help me. Others there have more problems than I do so he will make appointments to see the people they care for and write an opinion that they can share with their doctor or other care workers.
     
    I am thankful for what I have got. I look out on a nice neat lawn as my lawn mowing man came on Saturday afternoon just as I was finishing and really gave it a good mow. He should have been here Thursday but it rained that day. He is a cheerful person and always has a bit of a joke or a funny story. I am blessed by all who come into our home to help in any way. I enjoy the interaction they supply, particularly as Ray gets quieter.
  19. swilkinson

    five women in a spa

    By swilkinson,

    I went to my Women’s weekend yesterday. Well, I didn’t go for the whole weekend but just for a day and I enjoyed that immensely. Especially as Trev had volunteered to look after Ray for the day and I was confident that nothing would go wrong, I could just relax and enjoy the day.
     
    I am blessed that since Ray has been off the Metformin and on insulin twice a day his condition has improved, his faecal incontinence has returned to infrequent and his falls have halved. I don’t know how long this will continue to be the case but it feels so wonderful not to have to do many loads of laundry through the week. And what a saving on energy etc it is not having all those clean-ups to do.
     
    The day was bright and sunny and a good 80 degrees and no blustery wind or anything else to spoil a perfect day. As soon as I got to the venue I went into the spa. Well as all women know a spa with five women in it is a very noisy place, we talked about all kinds of things slipping from subject to subject effortlessly. As one woman left another climbed in to take her place so it was a very enjoyable 40 minutes or so.
     
    I would have stayed in longer but the program said: MASSAGE Sue W 11.45am so obediently I went off and had a lovely relaxing massage. The masseuse showed me how to loosen the tension in my legs and lower back with a few easy exercises. I will take note of the pressure points and hope I can stop some of those sleepless nights when the back aches and the legs twitch and I don’t sleep.
     
    We have a small marquee so lunch was there, luscious salad and cold meat rolls and platters piled with fruit. There was also wine flowing like water but I let it flow by me and drank the water instead. If I had been there the whole weekend that might have been different but I don’t drink and drive, if I am driving I don't drink at all.
     
    A lot of the women, both caregivers and survivors, went off for an afternoon siesta as they had had a late night Friday night. Friday night is the “release the tension” night so is usually quite intense and the stories I heard sounded as if that had not changed this time.
     
    I stayed up with a few others, sitting in the marquee, talking and laughing. One of the women who had gone to a friend’s place for lunch came back with a tray of oysters and prawns so we helped her eat them. These six caregivers sat and quietly ate so as not to wake up their sleeping companions…more likely so they didn’t have to share with them too…lol. I do like fresh oysters and prawns are my idea of heavenly food.
     
    As evening approached one of the women suggested I might like to shower and change and could use her room so I did that. I had a new blouse I quite fancied but of course others, younger and slimmer, came out in such glamorous outfits.. No I didn’t feel envious I once looked like that and as caregivers and female survivors we do need to be able to dress up and look and feel good from time to time. As women we can cheer others on so we clapped and wolf whistles as each new “diva” appeared.
     
    Dinner was good but the service was so slow. We shared the dining room with the dance floor with others but soon had the floor bouncing. Some people danced awkwardly, some with more grace and rhythm but who cared? We all ENJOYED some dancing in whatever fashion we are now able to. The female survivors particularly feel free in this situation to express themselves, dancing with the aid of a stick or a chair or on the arm of one of the other women. It is always a grand sight to behold.
     
    As the time approached for me to go home I felt a bit like Cinderella, but I was so glad I got to experience that day of perfect freedom. I got to talk and laugh and swim and eat oysters and prawns, to dance and sing and enjoy myself in the company of others. I am truly blessed.
  20. swilkinson
    I guess we can be of help to others wherever we go. I have been down to visit with my daughter and her family for five days. I wouldn’t say it was as good as where they live now as when they lived in Cairns and I had those lovely mini tropical vacations but it is still good to be there with them all. I love them and I miss them and it is special to be with them.
     
    Unfortunately the rain and the untimely cold weather lasted throughout the visit. I had only taken a few clothes so they saw me in the same thing with variations day in and day out. We didn’t get a lot of rain but it rained on and off most days. We got out for one long walk beside the lake but it was raining by the time we finished. Their two big dogs enjoyed it anyway, more than we humans did, who are fussy about the rain and getting wet!
     
    While I was down there I was just taken along when they did their work so I got to go to a luncheon for over 55's, a Home League meeting and a playtime group called Mini Music, for the under fives – quite a contrast in terms of who I saw and what they said but at each one I was able to share some of my life, hear other’s stories and share some of my experiences.
     
    At the end of the dinner I found myself sitting with four other caregivers and we had a mini support group meeting out of which (I hope) will come a lunch for Caregivers once a month. In any area there are too few support meetings to go to and a lunch once a month should be accessible for a few people at least. I think my son-in-law liked the idea and would support it.
     
    I found that with the older ladies they just saw caregiving as their lot in life. They had often cared for parents and now cared for their husband or in one case brother. They didn’t seem to think it was harsh that their retirement years had been gobbled up, except for one lady about my age who spoke wistfully of the holidays her friends had overseas and said with a sigh: “That was meant to be us.” I could so relate to that. And one Mum who had a daughter with a disability and had cared for her most of her life and asked: “Who would not do what I am doing?” I thought that was what applied to some of you here too.
     
    I wonder do children ever see us as PEOPLE? not just as Mum or Dad but the ones you feel sorry for and give a helping hand to? I wonder if they see themselves as capable of giving a helping hand? Maybe not, maybe we simply didn’t train them to care for others? I can say that my daughter has some sympathy for me but sees what she herself does in her caring job as a reason that is holding her back from being here, our older son uses his wife and three kids as the excuse and our younger son does do what he can as you know from past blogs.
     
    I discussed some of my current needs with my daughter but she still seems unable to give me a time when she can come here. It is as though she has the intention but not the priority to do some of the things I want her to do. I can understand this in a way as her life is busy with “helping others” and I would be just one more person on her list. I want her to sign some legal paperwork but she thinks there is “plenty of time”. Do we have that plenty of time I wonder?
     
    I am having trouble getting the family together for Christmas as it is. We had planned a "weekend before Christmas" party at Shirley’s place but now that has fallen apart. I wish I could get the family to consider their FATHER for a change, and their mother as his caregiver. Ray’s condition is deteriorating, this year I should be able to get him down to Shirley’s, next year I may not be able to. This year I have no intention of putting on a Christmas Day lunch for them all, I don’t want to and I don’t intend to. I know that sounds selfish but I have done it for so many years that when Craig volunteered to cook us a nice dinner I jumped at the chance. Please couldn’t the family just co-operate for once?
     
    Was my respite break a success? I’ll tell you when I have looked after Ray again for a few days. I have to pick up Ray from respite in the morning, go see my mum in her nursing home and pick up some food lest we starve, or have a very strange diet. It is good to be home again though.
  21. swilkinson
    Hi there, at last some exciting news, Trev and Edie are engaged, they told me this afternoon, wedding date yet to be decided. I told Lukie this was the best news as I now would get another grandson although I was prepared to share him with his other grandparents. His grin was from ear to ear.
     
    I am well pleased with their engagement, Trev needs to have a wife, a job, a mortgage etc. He is in his mid-thirties as is Edie so they will be fine together. I will never be able to repay him though for what he has done for Ray, he has been just brilliant the past couple of years. He has been my emergency back-stop and even moved back to two doors over to support us when Ray was back to having falls again.
     
    Ray is in respite to give me a break. I hate to do it in a way as I miss him and he misses home but for my sanity and well being it has to be done. I am sleeping right through the night and wake up ready to face the day. I have only done ONE load of laundry in four days, not a load every day. The house is cleaned and stays cleaned, the beds are changed, clean and dry.
     
    The spring clean is not going well. I am bad at sorting boxes, as I don’t really want to throw anything away. I admit it – I am a pack rat. I have sorted clothes, packed away winter clothes, reviewed summer clothes and have given some to charity too. I need to do a lot more of this and then I will be ready to wash walls, re-curtain windows etc. Well that is the theory anyway. It seems as if I am not going to get the bathroom renovated at this stage as my tradesman has hurt his back…sigh.
     
    Mum is locked down in her dementia nursing unit with a gastro bug going through the place so I have been unable to see her. I feel sorry about that as this would have been an ideal time to spend some extra time with her. I make such wonderful plans but they rarely come to fruition. I guess that joins me to the majority of the human race.
     
    Joy comes in all kinds of forms so I will continue to look for it every day. There is so much in our local area to appreciate, not the bugs who just ate off my coriander, or the ones that attacked my lettuces but the parrots hanging upside down in the grevillias (bottle brush) when I look out my back door are certainly a delight. And the brush turkey was back in my back yard briefly yesterday scratching up the garden rubbish I had neatly piled up. I will have to attack that job again tomorrow.
     
    I have been talking to a lot of people, since Ray has been away I have had more time for phone calls so am using that time to catch up with some of the old friends I haven’t spoken to for a while. These are ones who never contact us but I like them so want to keep in touch. One day we might get together again, who knows? We have the long distances to cover, for instance the cousin I caught up with while Shirley was in Cairns is still 1700 miles away but one day I might take a trip back there to see her again.
     
    I am going away for a few days next week so I will miss my chat but I am sure the people who come on regularly will do just fine without me. They are all so supportive of me and each other that it has made my job as a chat host such a pleasure.
     
    In the meantime I had better go on with the spring cleaning. Was that a dust bunny I just saw running under that bed?
  22. swilkinson

    wants and needs

    By swilkinson,

    Hi there all. It was a nice spring morning…not sure what is happening this afternoon as the wind is back and it is a cold one from the south so I guess spring is not ready to give way to summer yet. It snowed last week on the higher peaks of the Snowy Mountains and out on the Western Plains so that explained last week’s cold snap and the way we had to pile covers back on to keep warm at night. This week we’ve had a couple of warmer days but today it seems to be getting colder as the day progresses, not warmer as it should.
     
    I am as usual doing too much. I thought when I finished the Certificate course I was doing in Pastoral Care that I would have heaps more time…not so. Winter flattened me with the bronchitis, viruses etc and then slowed me way down so now I feel as if I am running to keep up with life. There is so much to do, places to go, people to see, I feel as if I am dragging a concrete pylon through life…wait a minute, maybe that is Ray?
     
    We were just discussing lack of comprehension of a caregiver’s needs this evening in chat. How difficult it is to get “me” time and to get our needs met. I do try to take “me” time, slow down the pace of life, pace myself in what I do etc. All this is what I tell new caregivers to do, but somehow it is hard for me to do. Maybe, looking back, I have always lived life flat out and although that pace is not possible now I still try to achieve it. I can just see so much to do and want to do it NOW.
     
    Today I did an interview with a University student on community care issues, this included how I find access to care, standards of care and whether the care I get from sources such as care providers and government run programs meet my needs. Errr…nope! While this survey is aimed at people who care for someone with dementia it could equally apply to someone who cares for someone who has had strokes.
     
    There is never going to be the care we want, need and deserve, the dollar does not stretch to that from the private purse, insurance, compensation or from whatever source our money comes to buy in care. We are stuck with the level of care we have now unless we can rope in family members, church and charity groups etc to help us extend the kind and amount of care we need. That will vary according to the difficulty of caring for the person who is your care recipient.
     
    So that’s my needs – how about Ray’s needs? We are using a service provider for five hours of care a week, three shower hours and two respite hours, he goes to Daycare and I take him to church and to the meetings of the organisations we still belong to. We are way past therapy of all kinds, that happened after the strokes in 1999, 2001, 2005 and again when we attended a six week program in 2006. The last lot of rehab was after his pelvis fracture in 2008. I guess I could look into more PT and OT but with his limited short term memory would that be beneficial?
     
    It is a balancing act, his need, my needs, his therapy, my outlets, his timing (naps etc) my timing. This marriage has had a lot of stuff thrown at it over the years and it is a wonder it survives, but it does, 42 years and counting. Why? I think because we have learned to compromise, well I have. Ray has just learned to ignore me and hurtful as it can be sometimes it has been a lifesaver for him and probably explains why HE has been married for 42 years. What does not kill you makes you strong.
     
    And so we go on from day to day. Someone suggested it is like room-mates, yep, some of the time it is, sometimes in is more like conjoined twins, one body (or brain) two sets of needs. You got that joined at the hip feeling? Me too. But I’ve also got the feeling of being needed, being useful and sometimes, being right where God wants me to be.
  23. swilkinson

    this and that

    By swilkinson,

    We all have pet hates, things we really hate to do and so we moan and groan and whine until that job we hate so much is finished. Mine at the moment is changing the beds, stripping them down, putting on new fresh sheets etc and then laundering the old ones. I just hate it, don’t know why except perhaps it is because we no longer share the one bed. Did your mother say: “If you want to share his bed, you better marry him first?” Mine did. So maybe not sharing a bed is still a worry for me.
     
    It is now some years since we changed from one double bed to two single beds. The new ones have thick supportive mattresses. The frames are strong, solid wood and the whole ensemble is very heavy. So at the end of the process, making two of them, I feel as if I have wrestled with an alligator and come off second best.
     
    My mother hated cooking. At 80 she stopped. Maybe it was the dementia or her age, or none of the above but she just stopped. My poor old Dad who had cancer, and was on killer chemo treatment for that, had to take over the kitchen. He got a system going whereby he cooked heaps and they had it for four days. A beef casserole might be fine on day one but by day four it was really bad nutritionally and not good at all in the peak summer season but all he could manage. I used to take up meals when I could so he didn’t have to cook all the time.
     
    I know some people hate shopping but I find it therapeutic. It can be one of our best things to do as it is half social time. Today we saw people from every part of our lives, so we’d walk a little way then stop and talk. Don’t you just hate those people who block the aisle, standing with a trolley side by side? That was me today. And we had lunch with my “boss” at Kids Club as the eating area was crowded and we offered to share our table with him. It was nice to just chat casually as we ate.
     
    While Ray had a haircut I caught up with an older friend and we finally had that coffee we’d promised for so long, it was only for twenty minutes but I think it was a break for both of us. She looks after her son who is forty and has had stokes and now has seizures. He is the loveliest guy but must be hard to live with. She seems to cope but she is past seventy and it is a big responsibility for her especially as he often has them late at night and she has to phone the ambulance and follow him to the nearest hospital at a time when an older lady shouldn’t really be out alone.
     
    I caught up with a lady I became friends with in the Dementia Lodge where Mum was before crossing the road to the nursing home. H. is a widow now, of the four of us that formed a little friendship group I am the only one who isn’t. H’s husband died last year. She had a heart bypass shortly afterwards. She says she is fine now, just unmotivated. After so many years of caregiving it is not easy to go back to a single, self-regulated life. I hadn’t seen her for a while so she told me who had died in the Lodge in the past month. For a facility with a population of only 25, the average is four a month. Only a few like Mum live on for years after entry.
     
    I saw Mum today. The activity was a program of music and exercise, it is done Tuesday and Thursday mornings so it is often on while I am there. The aids who do it are not trained musically so it has some funny moments as they try to sing and dance at the same time. The residents join in to different degrees. The sounds of their attempts make me smile too. I am not laughing at them, just enjoying being there with them. And I do enjoy the visits some days. With so much mental and physical illness you would think it would be all serious but these are wonderful human beings who although struck down by the terrible illness “dementia”, are still making the best of their remaining days with the help of family, friends and a caring staff.
     
    It is sunny today, overcast this morning but fine and sunny now. It is spring, the birds are singing, well screeching actually as they are parrots, but never-the-less it is a day to be happy to be alive.
  24. swilkinson

    seasonal changes

    By swilkinson,

    I just reread briank’s blog “A Decision” and the reply stessie left on it. I admit that since becoming Blog Moderator I read the blogs more carefully and probably at a deeper level. This has meant I see more in them now. A blog often contains a lot of material that is open to interpretation and the physical, emotional and metaphysical impact I think depends on the perspective of the reader. So if you and I sit down and read the same blog we will see different things.
     
    As a long term caregiver it is difficult for me to “move on”. I can come to terms with something I cannot change but I can’t “move on”.
     
    Brian talks about getting himself back to being BRIAN instead of just being a STROKE SURVIVOR and I applaud him for that. It is rather like the people who come onto the site naming themselves as a stroke victim, here we say we are only a victim if we want to be, those who have survived a stroke and are working on recovery are stroke survivors for sure.
     
    But a caregiver is a caregiver until the care recipient no longer needs care. So Brian’s wife can go back to just being, wife, mother, lover and friend and does not have to be a caregiver if he no longer needs care – right? Whereas my caregiving will extend till death do us part as I know Ray will not get back to that independence that will enable me to give up on caring for him. He may go into full-time paid care one day, a SNF or something similar, but that will not end my caregiving, only change the nature of it and the amount of time I spend on it.
     
    I do try to move on wherever possible, I do reassess what I do with and for Ray and make what I would see as seasonal changes. For instance I know in winter his muscles tighten up and he has a shiver response so I do not ask him to go outside in the cold more than necessary, to pick up his belongings or to walk longer distances where he doesn’t need to.
     
    In the warmer weather it is reasonable to expect he will be able to take something from the table to the kitchen bench, to go outside on the verandah and hang a towel on the railings or walk back to the bedroom for something. So his small tasks increase in summer, decrease in winter.
     
    I also change the way I do things in summer as the tasks change, washing dries more quickly, I spend more time outside doing the gardening or yard work, less time inside filling in time unless it is raining. I love to go to the beach and at least look at the waves so I will go a different route to and from where we need to go just to be able to look at the ocean for a minute or two. I want to appreciate the area I live in not just live inside the box that is my home. I live in a beautiful area and I want to be able to see it in the same way the tourists who flock here in summer are able to.
     
    As a long term caregiver I have learned not to make too many plans, for a while I planned my summer and was devastated when those plans didn’t work out. It was a big part of my wishing life could go back to the way it had been prior to the strokes. In the end I realised that kind of thinking destroys you, prevents you from living for today and impedes your enjoyment of the day you are in. In the end I realised that I needed to simply live today’s realities. Ray had had the strokes, there was nothing more I could do, life as we had known it had gone.
     
    And so I have to change and adapt. Ray really can’t do that now, if I want things to change I have to change my attitude to it all. So instead of saying: “I do all the work around here and it is not fair!” I need to say: “I am here to enable Ray to do what he can and do those things for him that he is unable to do for himself.” That makes the most of his abilities and allows me to think of myself as an enabler rather than a domestic drudge.
     
    You will understand if I say this is what I am trying to achieve not always what I do achieve.
     
    Now I have to think about what I need to do as the season changes. It is down to the mundane, the changing of the wardrobes, winter clothes away, summer clothes out, the buying of salad goods and other summer fare, the moving of furniture especially outdoor furniture to enable our summer program to take place. The washing down of walls, changing of curtains, (spring cleaning) for just as you folks are winterizing your homes I am summerizing ours.
     
    Changes, changes, all around I see, some are neutral, some are bad but most are good for me.
  25. swilkinson
    We’ve just had a week away staying with our daughter and her family. She and her husband only worked mornings while we were there as they had some time up and with a job where they work from home or office (they are Captains in charge of an area for the Salvation Army) they were able to spend some time with us.
     
    The weather was nice, spring-like and sunny for a change. We had walks and a picnic by the Lake and did some shopping and had a night out. It was all low key and I found it very relaxing. I am the champion at selling junk (well, precious pre-loved treasures) at the Market Day so managed to turn what little I had into a $45 profit. All those years of selling Tupperware in the ‘80s did sharpen my sales skills.
     
    We did have trouble with their bathroom with a narrow, glassed-in shower and a large bench to put in it. I became a contortionist trying to wash Ray thoroughly and will be glad to be able to shower him tomorrow in his purpose built shower room. Ray can be grumpy and uncooperative when he feels insecure so it was no pleasure to either of us to try and cope in was so obviously not disabled friendly. But as it is a rented house I guess that is not changeable.
     
    Being with the grandchildren is such a treat, they love Ray just the way he is having really known him no other way. To them he is just “Pa”. They have never known him to be other than slow on his feet or being pushed in a wheelchair. I wish some days I could erase the memories of how he used to be “before”. Naomi wanted desperately to push Pa in the wheelchair but can’t see over Pa’s head so we considered her too dangerous.
     
    The kids have a lot of electronic toys but put the bowling onto the Wii so Pa could join in a game or two. They did delight in out-scoring us of course. Naomi still loves me to read to her, so I did that and she and I colored in and drew pictures and did all that stuff that delights small girls. Her brother, being ten, teases her quite a bit. I know it is good for her but really riles her up! They are so “normal” it made me laugh sometimes.
     
     
    We change to daylight saving on Sunday, which moves my chat time to 11am Wednesday morning. I just hope I remember and don’t sit there wondering where you all are. I love the longer days so will not complain. Mind you I am wondering if spring has decided not to stay as it is chilly again tonight and we had snow falling down south today. There was even a little hail this afternoon here, could well have been snow by the way the temperature dropped suddenly.
     
    Ray enjoyed the chicken chowder for dinner tonight. I do enjoy meals at our daughters house as her husband is an excellent cook but there is something about the way the food you cook yourself tastes, those herbs and spices, the finishing touches that tell me there is no place like home, no meal like a home-cooked meal.
     
    I am having trouble with the showering, dressing, insulin, medication preparation etc in the morning routine. It seems the first hour and a half in the morning is completely devoted to Ray. I know it sounds petty but I really wish I had time to at least see my face in a mirror once in a while. The other day we went shopping and I realised as I passed a shop window that my hair was parted in the wrong place. I must have done it quickly and I hated that I looked out of balance somehow. It is really hard sometimes not to be able to have a quiet time of a morning just every now and again and really ease into the morning instead of diving out of bed when the alarm goes off and diving into the day.
     
    The shower nurse will be here again on Friday so after eight days of showering Ray I will have a dry feet day. Have to be thankful for small mercies eh?