swilkinson

I am thankful that Ray’s heel is healed. I am thankful that now the heel has healed he will not lose his leg. The vascular surgeon may even come up with something to improve the situation. Ray only has 50% blood flow in his left ankle but the vascular surgeon has downgraded his condition to non-critical. We are still going to go ahead with the next set of tests and will then make a decision about whether to go further. It may mean a bypass operation where a vein is taken from the side and replanted in the left leg. With Ray’s other conditions this would be a risky business so if there is another less invasive surgery we could try that first. My English cousin said her brother-in-law is in hospital having just had a similar operation and could be as long as four months in recovery so it is not an operation to be taken lightly. I visited Mum today. I go to visit her mainly to see that she is clean, dressed in clean clothes, looks fed and well looked after. I know the staff takes her to the main lounges for various things despite the fact that she responds very little now. When I first visited Mum this morning she was doing the staring into space thing, then shutting her eyes, didn't turn her head towards me at all, makes me so sad. I like to share an activity with her if I can as sitting beside her bed seems to just allow her to feel comfortable and sleep more. I read a post on Strokenet about missing you husband, I sure do, it has been so long now since I thought of Ray as my husband and not just the invalid I look after. He used to be friend, lover, companion, handyman, provider, father, dancer, so many things. Those days are long gone. Now he cannot work, hardly walks, doesn't process thought. I guess I mostly look after him because we said those old fashioned vows: “till death us do part”. One day that will happen. And of course I love him still and he needs my help. I started taking some “me time” in my time away from Ray, I failed miserably in that this week as there were so many things to do for Ray. But next week I am determined to take some of the free time I have promised myself. It is hard for a caregiver to put themselves first and I have been doing this for so many years now it is as if this is my full-time job. I guess it is, what is lacking is the pay packet and the four weeks holiday and the rest of the benefits. We have not had much outside contact this week although we did go to Lions dinner and out to lunch with friends. I think I mean at a personal level. Few people make the effort to come to our front door now. We do speak to our family on the phone, that is a joy, to speak to the grandchildren and catch up on the doings of their week. But it is not the same as seeing them face-to-face and knowing they are well by their shiny eyes and flashing smiles. I really miss visiting the family but since Ray is no longer as mobile or as portable it is too hard for us to travel distances now. I did tell my daughter I would bring him down if his mobility improves but I don’t think that would be any time soon. I am even missing the flying to Cairns as traveling on the train to where they are now actually takes the same time as the flight. Yep, trains travel slower folks. I confess to feeling sad sometimes. I know a lot of people think I am Super Sue but I am not, just a middle aged wife looking after an older invalid husband and supervising an old frail mother in a nursing home. Not a lot to rejoice in on this part of the journey. My faith holds me up when the world tends to crush me down. I am blessed with some good friends but having less and less contact with them makes that harder too, not only because Ray is frail but because, being caring people, they have some family responsibilities too. As Tiny Tim said at the end of “A Christmas Carol”: “God bless us every one.”

As well as planning to retire you might think what that retirement might be like. Do you have new things you want to do, places you want to go, study opportunities or social events that will fill in the gaps where work used to be? I was involuntarily retired to look after Ray but I also looked after my Dad for four months (terminal cancer) and my Mum for another two years with Alzheimers. It was not until she was in care and it was just Ray and I that I realised I was out of a job.I did feel some grief and was a little bit lost for a while even though I still had Ray to look after. Retirement, whether it is planned for or imposed by outside forces does make life different and so you must plan for it to happen so you can rebuild your life again. (((hugs))) from Sue

Jan, welcome back, so pleased to have you in our blog community again. I find your blogs so down to earth and yet also so uplifting. I am sure in your place I would be less optimistic. That is one of the things I love about you. You are realistic AND optimistic. I might not be a stroke survivor but know I am a survivor in a lot of other ways. Ray and I together are a survivor team, just as you and Wayne are. We too have lost friends but those we have kept are worth real gold. Keep smiling, Sue.

The cats in my life have always come to me second hand apart from two brothers I had early in our marriage, fully paid up Fight Club memebrs. I well remember them climbing and skiing down my lace curtains and shredding them with their claws. Until they were neutered had the same problems with scent marking. We are without a cat at the moment and I must say I miss the snuggles. Sue.

Some days have a few extra challenges. Today when I checked my emails I had a note from my ISP telling me the direct debit they do each month had been unsuccessful, so problems with my bank account. Then just as I logged into chat the banner across the top told me my Java was now out-of-date, and would I like to run it just this time? Yes please as I was already late. And then a neighbour popped into the house to ask me if I knew my power line was almost down on my driveway? Help! So I was late into chat, I had to ring the power company’s “Major Emergencies and Hazards Line” with my problem to solve because I had Ray away at Daycare and the bus would back up my driveway, catch onto the wire and I would have been responsible for barbecuing a busload of oldies. Please, where is the sense of humour in all of this? The whole world seems to be laughing at me some days. Sorry chat group if I seemed a bit distracted this morning, I was worried that 1) my Internet would be cut off or 2) my power would be cut off. That is why I scooted away while you were all still chatting away there. I don’t usually run out on people like that. My apologies to the new people who had only just come in, next week will be different, I promise. Thankfully the nice lady teller I spoke to at the bank cleared up one mystery, my virus protection provider had taken our their fee a month before they were due to…so insufficient money to pay my ISP…easy fix, just add money. Then I emailed my ISP to resubmit the account. Phew! I had agreed to go to a Carer’s meeting at the facility Mum is in now. I had never been able to go to it before as it is on the third Wednesday of the month. So I went to that this afternoon. Of the nine people there four of them I already knew. The coordinator is the chaplain that came to comfort me when Mum did her “dying swan” act so she and I are well acquainted. I was asked to tell my story and told it as briefly as possible. Stunned silence. I guess the way I tell it from looking after three people to looking after two and now looking after Ray and supervising Mum’s care is a bit of a “tall tale but true”. I told my online chat group I was going to a “live” chat group and John (john88) rightly asked me if they are not “live”? I guess I meant face-to-face not “live” as of course you are all “live” just as I am sitting here typing this out now. Very alive indeed and as mad as a hatter some days….lol. But I guess all is well that ends well. When I got home the power line was back where it should have been and my next-door neighbour said he saw a truck with a ladder and a man doing something up the power pole so it was fixed not long after I left this afternoon. Whew! If the rest of the week goes smoothly I will be grateful. Yesterday Ray and I went to the podiatrist and she gave Ray the all clear, the foot is officially healed. He has to go to the vascular surgeon tomorrow so we should have an opinion of whether or not he needs the veins and arteries in the left leg further scrutinized. The circulation is not good due to the diabetes. I am praying that if there is something that can be done to make his circulation better it will be done. After we had seen the podiatrist we went across the corridor to see the orthoptist. The orthoptist did the plaster cast to make the AFO (brace) and Ray no longer needs the heel padded just “double socked” so I will pad the left foot by putting on one short thick sock and the usual walk sock over the top and see how that goes. Ray knows he has had a lucky escape with the blister healing and still having both legs. So if you still have two legs that is something else to be thankful for. I am thankful for mine and for Ray’s. On a good note I had the visit from the English cousins on Monday and enjoyed it immensely. Marilyn is really nice and had been up to see Mum’s step-brother’s widow (Mum’s step-brother was her full cousin) and it was good to have news of how Jean is getting on. She was caregiver for her husband, Mum's step-brother John so you all know that after the loss it can be very hard to take on yet another “new normal” in widowhood but she appears to be handling things well. And so good people, this is Sue, live from her computer in her house on the lovely Central coast, east coast of Australia, signing off as usual with “bye for now”.

Ruth, I'm glad you had a night out for William's birthday it is worth celebrating another year together. I am Ray's manicurist and pedicurist too. I rub special cream into his legs and he smells like a bunch of lavender! I always tease him about that. I do a little massaging at the same time as I know that makes him feel good too. :happybday: William. (((hugs))) from Sue.

Julie, I've found a way of getting a conversation started between Ray and the kids. I say: "Get your Dad to tell you about (something we've done)" then as Ray has a poor memory now they ask questions until they get him to tell them what he did. He does remember eventually and it extends the conversation time. Glad you got him to make a decision about the food at the dinner out, it is good if they think about what they are eating. Good luck on finding the right car, I took my sister around with me, she is a real bargain hunter and we did find a car that was just what I wanted, economical and I can lift the wheelchair straight into the back. You're a woman of good judgement so you'll make the right decision. Sue.

:beer: Happy Anniversary Wayne, glad you are still strong and over the worst of the stroke defects. It is great that some people do get so much back. I am always glad when someone comes back on to blog some good news, makes my blog report more interesting...lol. Sue. :cocktail:

Heather, five extra years of life - congratulations. Now plan for some big events in the next five years, live life to the full. Hope the anniversary party (and the anniversary weekend) goes well. Sue.

Amen indeed. Sue.

Ken, hope you're over being purple, yellow and blue as soon as possible. Yep, two people at the bottom of the stairs in their birthday suits does conjure up a picture. Glad there were no bones broken and you be real careful from now on and stop scaring your caregiver - right? Sue.

Kelli, I understand about the catholic thing. Fish on Fridays...still happens here sometimes but I don't worry if I don't remember, there is more to life and you discipline yourself in other ways. I like music as a wind down, also blogging and beading. With beading you move into a world that is infinitely small. It really focuses my attention away from my worries. I scream on the inside sometimes and cry in the shower. I am a woman - nuff said! Sue.

Debbie, is it all beginning to seem like a constant battle because that is the way I read this. I get an insight into Ray's behaviour by looking at Bruce's here. The telling phrase for me was "tired of doing his stuff". A friend (former friend now) once asked me if I was trying to turn Ray into a "*B* housemaid".I was really mad with him at the time but looking at it from a man's point of view I guess that is what it seemed like. Ray can't do bloke's work so she is getting him to help out in the kitchen. Don't know if this applies but something to think about. From then on out of courtesy I always asked for Ray's help. You are doing well, doing everything you can think of to help his recovery. Remember to take some time to relax and enjoy life along the way. Sue.

Lydi, the whole recovery process is not a fast track. It is the the day-by-day-by-day getting enough sleep, eating healthy food,doing your exercises, spending some time praying or meditating, that is the path. You cannot just do what you used to do and expect recovery. It simply doesn't happen that way. First think about why you went back to work apart from the insurance, for the satisfaction of working, using your talents and abilities? I guess for the pay too. You may have to just quietly do your work and come home until you build up some strength, you don't have enough energy to do any more. At home,you have your husband and son in partnership with you. Have a daily routine so you know what you need to do and what your partners are doing. Dinner will not be a chore if you plan a week's menus. This makes shopping easier and cooking much easier, no decisions to make, you know what you are doing. Wish there was an angel here sometimes, to sweep me up and away from here but I am a caregiver and I have to BE the angel to Ray, just as you do to your husband and Logan. Sue.

Our son Trevor once got stopped in 'Sydney when a sniffer dog smelt something on him. He had been cleaning out public housing flats, all kinds of rubbish piled high and who knows what it all contained. When he took off his shoes and the dog sniffed just him he was clean. Funny old world eh? Sue.

I don’t usually go to the doctor’s by myself but I did on Monday. I don’t go often as there is nothing much wrong with me. This time I had an earache that despite my best effort with OTC meds and ignoring it did not go away. So I sought some antibiotics and a little TLC. When you have been a caregiver as long as I have, eleven years and counting, the doctor tends not to see you as a person. So I walked in and before I sat down he asked me how Ray was! I would have thought the whole point of going was to have someone concerned about me. But all he was worried about was how Ray’s caregiver was but he did give me antibiotics so I am just getting my hearing back at last. I went again to the beach after chat this afternoon, about 80 degrees, warm and sunny,with a gentle onshore breeze. It is a nice spot and I love going there. No-one else there today so it was my beach, just me and the sand, the wind and the waves. I could sit there for hours but as I had 80 minutes and that included the drive there and back about an hour was what I had. I probably have five weeks more of nice warm weather so need to make the most of it. I got home about the time Ray would have been home but the bus driver picks his grandkids up on Wednesdays so he dropped everyone but Ray, did a little loop and picked them up. It is good we are still “small town” enough for that to be possible. It was the Monday/Tuesday driver today as the Wednesday/Friday driver was off sick. I like it that the carers are up close and personal with the Daycare clients. Some, like Ray, have been going for a long time and it is part of their routine. The doctor asked me how long since Ray’s first stroke – I told him 21 years now. He looked at me and said: “That is a long time for you too.” So he does recognize the work I do as a caregiver. I have to get paperwork done by him each time Ray goes for his two weeks of respite and so he does know he goes there now. Of course when Ray goes in as the patient he concentrates on Ray’s needs. I think few people relate to the “long haul caregiver”. Mostly when we think of caregiving here we think of those who look after cancer patients and those who look after elderly parents, not so much the spouse caregivers. When I left Social Services in 1999 there were over 300,000 people in New South Wales who qualified for a Carer’s Pension, who looked after someone needing 24 hour supervision. Of course that does not figure in those who look after someone but work part-time or are self funded retirees. I don’t know what percentage of the population are caregivers but there are a lot of us out there. Sometimes I feel sad about how life has become for us. I know we do less and less in the community and spend more and more time in the home. I guess that is inevitable with Ray now having dementia as an addition to the stroke damage, the diabetes and other minor ills the doctor hands him so many pills for. He is less and less able to relate to others now so socializing can be a painful experience for him. My advice to others is go out when you can and while you can. It is great to have plans for good things to happen somewhere in the future but we do not know how much future we have. And good times do not have to be expensive, a picnic, a drive to a farmer’s market, a movie if the person you care for is capable of lasting the distance. There are regular activities that are pleasurable to do which don't have to cost a lot of money. I used to enjoy swimming at the heated pool, or bowling or just regular get-together with friends, I just have to look at all the possibilities. I love to eat out once a week, with or without Ray and to spent time on the beach by myself like today. If Ray had been with me I would have gone to a different beach where he can sit in the car but still be fairly close to the water’s edge, or go down by the lake which is just a ten minute drive from here. It doesn’t have to be across the globe to be a break or a change of scenery; it can be across the road and round the corner. Anywhere that is not just looking at the same view gives you a different perspective. Today on the beach I sat on a rock with my feet in the water and thought my own thoughts. It was not a big intellectual exercise, more a slow washing of ideas through my head. I felt in tune with the ocean, pleased to sit and do nothing for a while. I used to do that a lot in my younger days and it is one of the things I have been missing. When winter comes I will have to find different things to do. There is an art gallery about twenty minutes drive from here and a couple of interesting old houses opened to the public. There is close by a heated pool if I decide to keep up my swimming and of course cheap eateries galore. I don’t have to be bored because I am by myself I can phone one of half a dozen old friends and get company if I want it. Half of making life good is in the planning, the other half is allowing it to happen and allowing myself to enjoy the break.

Sunny, I posted a reply on your thread on the forums so nothing much to add here. Just as you say growing up is what we have to do when suddenly the responsibility for our loved one's care falls on our shoulders. We will be here to support you, not in person, but in any way we can with virtual hugs and emotional support. (((hugs))) from Sue.

Lydi, with or without having had a stroke we all have those disconnected days. It is part of life. Remember though that not feeling hungry is not an excuse to not eat healthy food. We all need fruit and vegetables, good quality protein and just enough fat to keep our brain going. Good nutrition is one of the keys to keeping healthy and having good energy levels. Hope you had more energy as the day went on. If you office is air conditioned remember to drink plenty of water too. Sue.

Lydi, you can "give up or take up" for Lent. So if you can't think of anything to give up why not just do something like have a charity box on your desk and encourage colleagues to make an occasional donation and at the end of Lent you can send the money off to the charity and you will have helped someone. I agree that pre-stroke you crammed so much into your life and now it is time to re-evaluate. So priorities go something like: Family, work, outside interests, my spiritual life.Spend some time in Lent thinking about that, what you want in life, what you need in your life, how people will remember you etc. I think that has been a big lesson for me during my journey as a stroke caregiver. I know now it isn't all about me, many of my best deeds will be forgotten, but many happy moments spent with friends and family will live on forever. We are all important to someone just for what we mean to them, not for anything special we have done. Sit down with someone you trust in your church and work out what you can do and what you can't do. Then from the "can do" list pick out what you actually want to do. Sue.

Ruth you let William do so much that he enjoys but still do the things you HAVE to do. Good for you both. I wish looking back that I had insisted a little more with Ray...sigh. Keep up the good work. Sue.

Hey Jeannie, I love the use of the water bed frame, that is some genius recycling. You and Carl are a great team. I hope all you garden plans accelerate once you have the rain you need. Sue.

Yep,family is what it feels like here. And welcome home is how it is expressed so many times. Lydi, I am glad you are getting so much out of blogging and posting, it is good to have you here. Sue.

Fred, still money around to send rockets into space it seems. And here to hold yet another state election with all the advertising as usual. I think it is only the little guys feeling the pinch. If you can't afford to travel too far from home at least pack a picnic and head to the nearest park, lookout or scenic spot. There is enough beauty in Nature to lift your heart. And sharing what you have with others can make you feel good too, so give as generously as you can to good causes in your community. Fred, God has blessed us and we need to pass that blessing on to keep the blessings flowing. Sue.

Asha, nice to hear you celebrated the 14th birthday with family and friends, although kids say they don't want a fuss they still enjoy being made the centre of attention. You are the Queen of going with the flow. I have learned so much from you. Sue.

Fred, I thank you also, you always inspire others to do things they have been putting off. Ray and I have had the tests though mine was long ago and may be time for another. My Mum had colon issues so perhaps that means I may too. Praying for so many people, as there gets to be less praying people we all have a bigger list. Sue.