swilkinson

Hey leese, welcome to the blog community. Settle down, write what you feel, you are among friends. I am a caregiver and must confess that I cried a lot for the first six months after Ray's major strokes, I cried for him, for me, for us, for our friends and family. I cried because I felt helpless to do what I wanted so badly to do to "save him". I can relate to having to go outside again, I did a Museum trip with teenagers and a broken ankle, same scenario, they had moved the entrance. Hobbled around the block in pain. As Asha says, blogging it out is therapeutic. Sue.

Wayne, glad you made this discovery and can do something about it to improve the situation. No you don't want to have another stroke, Ray has had five and multiples are no fun. Thanks for updating your blog and keeping us up with your life. Sue.

It’s raining again. Ray and I were going out for a picnic by the lake, but it’s raining again. So we sit, we relax, we reflect and contemplate life. It is colder with the cloud cover, yesterday was warm and it was hard to believe summer is over, today it is cold and it is easy to believe winter is coming. It is what Easter is about down our end of the world. It is not Spring, so not that sudden burst into bloom of all the spring flowers, not the gradual rise of temperature and the return of the sun. All the usual trappings of Easter, bunnies, chickens, eggs, fresh flowers all seem so wrong for a southern hemisphere Easter. It is not easy to think of new life when the trees are losing their leaves, when the roses are looking like sticks with a few late blooms on them. It is obvious this is not the new beginning but the beginning of the end. More like slowly dying than joyfully rising. So we have to think in a different way. Easter is about enduring. It is about living the life despite what is happening around you. Jesus rode into Jerusalem on the donkey knowing he was riding to his death – that is the Palm Sunday lesson. Doing what you have to do regardless of the consequences, doing what is right for you. It is about living a life that is consistent with your beliefs. Yesterday we had just a few kids up the back of the church in my little coloring corner. I made them butterflies out of pipe cleaners and had some pre-made butterflies on sticks to give them. We had a cartoon called “Fred the donkey” as a children’s story, a part of a series of Bible stories for kids made in New Zealand. While the sermon was on they were up the back with me. It is good to see the stranger and the regular attendees passing the pencils and getting on well together. Children’s church is a mini community of faith. We have had a quiet Easter as our families visited last week. These days we have very few visitors. I have 100 friends on Facebook but few face-to-face friends now. That is sad in a way, as we don’t get to laugh together. I really miss having a good laugh. I do have a couple of people who I talk on the phone to who I can laugh with but not that hilarious, hiccupping, tears-in-your eyes kind of laughter now. We live a much more sober life than we did prior to the strokes. My next door neighbour gives me a massage voucher for Christmas. I didn’t use last year’s as it didn’t fit into my life somehow. He reminded me that he still owed me one. He is away a lot as he is a geo-statistician involved with coal mining. He says he will be home for a while but then something goes wrong and he is off to Indonesia or China or somewhere. It is a strange kind of life. He lives here as he loves to surf, is involved with the local Lifesavers and has a teenaged daughter close by. I like having a long-term neighbour but wish he was home more. We talk balcony to balcony. The parrots are busy with the last of the autumn blossom, at night the bats are noisy as they attack the last of the umbrella tree fruit, the date palm fruit, the native fig tree fruit and anything else sweet and tasty. These are big bats and they fight over the access to the trees all through the night. Makes for a noisy neighbourhood for the time the fruits last. And so we contemplate the winter to come, knowing that it will be more difficult to get out, colder in the bathroom of a morning, harder for Ray to get out of bed and to get around as his muscles tend to be stiffer and getting up out of a chair more difficult. We don’t heat the house to more than warm as it is open plan and hard to heat so we warm up the space we are in and accept that the power bill will be much higher, everything you do in winter costs more money. I have enjoyed what we had this summer, warmer days, and not too many humid and uncomfortable nights. We didn’t do a lot because the diabetic blister made staying at home easier than going out particularly for the 8 weeks I had to wheelchair him everywhere. At least he was able to walk into church on Easter Sunday and can sit by himself on the pew without having to sit in the wheelchair and me worrying that he is in the way. The good news is no specialists’ appointments in May. The vascular surgeon said he cannot do anything about Ray’s blockages in his feet so to keep an eye on the condition and he will only operate in an emergency. Today we noticed a rub mark on his left big toe and I applied a Meplex strip to cushion it in the hope that it will stop a blister from forming. The kidney specialist is also on a six monthly visit as is the neurologist. Our GP will see us once a month unless something goes wrong. I will cope in winter, I know I will. I will just take it a day at a time as I have all the summer. Some days will be good, some days not so good, 24 hours at a time.

Happy Easter We had a joyful service, a lot of what we call "Easter folk" who we won;t see again till Christmas but at least they were there. I had the kids up the back and we made butterflies which is my favourite sign of new life and drew on balloons and made "Happy faces". My contribution. Sue.

Nice to hear from you again Stu. We ned the ones who have made the recovery to stay on and help others through the process. Being a grandparent is such a boost. Hope the little one comes safely into the world and look forward to you posting photos on your next blog called:"Here she is!" Sue.

Great news, and congratulations to all involved in the training and encouragement. For children or dogs at times there can be a period when the problems seem insurmountable but kindness and patience can achieve so much. So glad you turned your troubled dog into a Canine Good Citizen. Sue.

Jeannie, enjoy Spring, the loveliness of nature, the sun shining through, the blossoming, the warmer weather. Get out and about as much as possible before the heat of summer comes. I am glad the pain has gone from your left knee, it will make a big difference to how you feel about exercising and being active. I am always glad when you write a blog entry...like a letter from a good friend. Sue.

Julie, the extreme weather is very frightening, I am glad I am not in an area that gets violent storms. I am glad all your family are safe and will be mindful that others were not so lucky. Sue.

Dean, there is a motivation needed to increase the effort, boiling water will motivate the frog, slowly heated water will lull the frog into thinking summer is coming. My dear husband has been slowly going downhill, has no motivation to exercise, does not see sugar as his enemy so his diabetes gets out of control. Because he feels tired after he walks he does as little walking as possible. It is the slowly heating water...or slowed down activity..that will kill him in the end. Maybe one day we will learn not only how to teach people to exercise but to inspire them to do it also. Sue.

Lynn, with three kids and six grandkids I can empathise. Yes eleven hours is a long time to look after little ones. A complicating factor for me is that Ray jumps when there are loud noises so I can't have the two little boys aged three and four but can have their nine year old sister during school holidays to give her time out and their Mum a break. It must seem like favouritism to them though. Sue.

Julie, there always seems to be something to rain on our parade. Larry has the same attitude as Ray - everything comes out of "his" pocket (mostly it is out of my savings!) Hope you get fixed up with the right carer for Larry so you can go ahead with the surgery with a peaceful mind. Sue.

As a retired vet nurse a friend of mine ran "Puppy school" at her local Animal Clinic. She held one mid-week and one on Saturday afternoons - and got paid for it! There are a lot of people looking for classes of various kinds so maybe you can include this in your research. Sue.

Great news Katrina. Congratulations. Sue.

Sounds like great fun and big spending, bighearted people throwing the party. I have been to many childrens' birthday parties over the years and I know some people do treat their fur babies as if they are their children. For me, the main thing is that you and Sam are getting out and about and enjoying the company and outdoor activity. Keep up the good work. Sue.

Lydi, most of what you have written is just stuff about adjusting to the new you. I would see some stormy days ahead but if you both work at it it will all come right in the end. Sue.

On the Carer’s Strategies for Coping list number 7 is: Patience and tolerance – think twice before reacting. It is such good advice but so often it is the opposite of what I do. Under stress I rush around, hurry, hurry, hurry I say to Ray. I get into an anxious situation and over-react, I lose my keys, my purse or my handbag and I panic. In short I am just an ordinary caregiver doing extra-ordinary things (as we all do). I do it not because I am special but because that is what is required. Ray survived the four days of our grand daughter Tori’s visit fairly well, I think because she is less intrusive than the other grandchildren. She is very considerate for a nine year old and if I signal her to go or to be quiet or send her to fetch something she obeys immediately. Which is why we can have her here for four days on her own. She had something special to do every day. I collect bits and pieces so she has fun stuff to do. On Sunday morning she came to church with us as she normally goes to Sunday school when she is here. In the afternoon after lunch she painted some little plaster animals. I bought them cheap and already had the paints from another project. She enjoyed it but when we went shopping and saw a similar kit with only two ready-to-paint plaster items for $11 she realised how lucky she was to have had four to paint. I think I paid 50 cents each for them at a garage sale. We had a pretty good day yesterday. It was the short Daycare day so I was hoping to take her to the movies and timed it just right so we were able to see "Hop". It was expensive as we had lunch afterwards but this is her school holiday treat so I was not worried about the cost as long as she enjoyed it, which she did. It was another busy day today. It was Tori's last day with us so I packed a picnic and we went to a local park. Tori loves a "fancy feast" so we had savory biscuits and cheese, then a meat and salad roll, then a muffin with our drink and lastly chips. She was very impressed. She climbed all the equipment and played in the open area with some other children. The park is called a Liberty Park as all the equipment is set up to be handicapped accessible. I think because of the intriguingly different equipment the able bodied kids love it too. Ray has some sneaky ways. People with dementia it is said replace lost intelligence with cunning and I am sure that is true of Ray as he waits till he thinks I am occupied elsewhere and sneaks food. Sugary foods and diabetes do not go together but as Ray's diabetes is often way out of whack, the sneaking food compensates for the fact that I monitor what he eats. When we came home from our picnic he went to the fridge and got a large handful of grapes, he dropped most of them as he couldn't eat them fast enough to prevent me from seeing them. After the episode with the diabetic blister he still can't resist sugar rich foods. I get mad about it but what can you do? Tonight we went to the Lions dinner so I had to wake him from his nap and of course because of the extra sugar he was argumentative and awkward and so slow so I got flustered and we went off very unhappy with each other. That is when the patience and tolerance needs to be exercised – by both of us. It takes one to start an argument but two to continue it. I stay with Ray because of the good times we have shared, the children we have raised and the memories we have of better times. We have been married 42 years and neither of us can wipe that out. We used to be a good team, raising our kids, keeping the inside and outside of the house immaculate. Now I struggle to do that all myself. I know I am losing the fight but battle on valiantly. So I do try to think twice before adversely reacting and keep the peace.

I'm glad just computer woes were what kept you away from us. I miss my blog community family if I am away as my daughter doesn't have the internet connected at home, only in her office. And if I go anywhere else it is too much to take a laptop as well as luggage and the wheelchair for Ray. You can tell your son Sue says (on behalf of the blog community) we need Lynn back. (((Hugs))) from Sue.

:happydance: Sounds like you are dancing on the spot most of the time with your friends saying "dance faster". It is odd how because they want someone to recover they think they have! Sorry you feel so down at the moment. Maybe there will be a change once you retire from your job and move on to something new. It is sad that old friends just so want you to be the way you were and pressure you to present yourself that way. And of course that is asking the impossible. I agree with Asha, as long as your family is supportive of the new you that is all that matters. Sue.

Debbie, I sympathise with Bruce, truly I do, but I can't empathise. We've all got a reality to live with and our wish list can never be our reality. I think Bruce is still in the "wishful thinking" stage, still not accepting his life as it is, so he can't move on to what it could be. With you two working as a team it could be a great life. I do feel for you with friends so ill and nothing you can do about it except pray and keep in touch. The caregiver and the nurse in you must be longing to reach out to them all. I've been in the same situation myself, longing to help but knowing my duty was elsewhere. Just keep going, one day at a time,and life will slowly change. ((hugs))) from Sue.

We are missing our son Trevor who is holidaying up in Queensland with his little family but just had our daughter Shirley, her husband and two kids here for a day and a half. They decided on impulse that they could squeeze in a visit if they just moved a few meetings etc and up they came. They hit a lot of traffic but said it was all worth it to spend some time with us. I am talked out and Ray is tired out. It was so lovely to have them come for a visit, however short. Shirley and family are not hard to have stay as they work their activities around ours. Yesterday I had chat and so they went for a walk while I was doing that. Then we had lunch and some walking, Craig pushed Ray in the wheelchair, home for naps and then of out to dinner. It was lovely buffet food and I think I ate my weight in seafood. This morning we had the shower nurse come so the children went for a walk with Craig and Shirley and I went to see Mum. My Mum is permanently in a wheelchair and I think Shirley was shocked in a way to see how much she had deteriorated since she saw her last September. She was awake and asleep as she usually is. Mum has a tray with a "fiddle rug", a tray cloth that has different textured attachments like a thick string with three wooden beads, several different knotted wool ties, large buttons, a twisted wool worm. Shirley got one of the wool ties between Mum’s fingers and she pulled on that. When morning tea came (a concentrated vitamin rich milk supplement) she helped Mum to drink it. As I do, I think she felt as if she had done something good by being there. Particularly as` one of the aides said: “She does have some other relatives then.” As I am usually the only one to visit it did make a change. Ray comes when I have to go check on her and I have no-one else to mind him, but he is uncomfortable there. We have made plans to go to Shirley’s at the end of next month. This time she wants us to take our car so we have worked out a way of doing that with Trevor’s help. I don’t drive through the city of Sydney now, it is too busy, the traffic is too fast and there is nowhere to toilet Ray if he suddenly wants to go. With a co-driver I can get in the back seat and help him with the urinal. I have just realised that over Easter this year I will have six days without care as our provider is not doing care during that period and Daycare will not be operating on the Monday. I enjoy the free time even if I still go shopping or pick up Ray's medications. I also use it for visiting Mum and a couple of old friends in nursing homes too. It is "me time" if it is something I choose to do. I didn’t send Ray to Daycare yesterday as we had our daughter here but then we had the walk and a lot of lovely talk so I feel as if I did something out of the ordinary. Tomorrow I have Tori come for a visit for four days. This is a chance to have some Tori and Granma time. Without Lucas here she will also be able to do some quiet reading which she loves to do. We will also take her to the shopping centre to do a little buy up and I plan to take her to the movies next Monday. Ray can’t go to Scallywags tomorrow as they have a day out to one of the local Clubs planned. There is too much walking involved and Ray would need to be in the wheelchair and that is why he can’t go. He will probably sleep a lot tomorrow anyway, tired from the exciting family visit.

I soooo agree. We can do so much but unless our survivor participates in the therapy etc there is nothing more we can do. Like you I want Ray at home with me not in a nursing home but he knows that unless he can walk that is not negotiable. When he is in respite (his holiday) I sit in the sun, read a paper, go for a walk, or spend a few days at my Daughter's place (my holiday). No guilt MaryJo, you worked hard on his recovery, now take it easier until he is back home with you or settled in his future care home. (((Hugs))) from Sue.

Lydi, watch for some emotional reactions from yourself too. It is a bit like giving a eulogy, you can get caught up in the emotions. So make your homily very matter-of-fact OR all about your reactions as emotions would be natural here. When Ray had the stroke I found I identified a lot more with those whos lives had taken them down hard roads ( I still do) and so some of my thoughts about what was happening to us crept in. This would make me very emotional so I found I really had to script much more than I had previously to keep this under control. Some changes are good and this turned out to be an asset in the end. I hpope that you find the same. Sue.

Jeannie, you are such a go getter, you have so much patience and so much to give to others. I hope you form a group of people happy to learn to crochet and able to have a chat or a laugh and form friendships that will last. Sue.