swilkinson

I echo Asha's comments. It is great to have that feeling of accomplishment and good to be with like-minded people. I used to love craft days at a friend's home but that was a long time ago now. Don't go back on it now and feel guilty - me time is essential for your well-being. Wish I was there and could join you, I still have my 1998 English trip photos in envelopes (hangs head) so that is how far behind I am! Sue.

You are "lucky" because you have a great attitude and you make your own opportunities and you deal with life, post-stroke, realistically. A lot of people don't do that. They are waiting for things to go back to "normal" and they never do that without the effort people like you put in. :cheer: So :congrats: Sue.

Debbie, congratulations on your new perspective, it is indeed not all about stroke. It is about life, getting up, doing what you have to do, spending time on the things you WANT to do. I do handicrafts, read, bead, come onto the computer. Like you I have my coffee on the deck (front verandah in my case). Life is also about action and reflection, what we do and what we see as important. Keep on doing what you are doing, Bruce is improving so it is obviously working out well. Sue.

Fred, you all need to take a step back and see if you can kickstart the economy by doing all the things we used to do like buying local produce and products, setting up small businesses, growing what you can where you can. In keeping our own household budgets out of debt we keep our country out of debt. I think we will see a new kind of economy in the future, don't see what it will be like but each country takes it's own values and priorities and makes the best place they can for their citizens - if they are wise in government. Blessings, Sue.

When Ray did his workout in the pool I used to jog in the water, if Trev came too I would swim laps. I sure could do with that now as I too am gaining weight. I am thinking about therapy for Ray but the pool is not an option as he is incontinent. I will just have to see what I can think of. You are right , tolerating the routine is what helps us keep our survivor as active as possible. You are such a fine example of how to do this. Sue.

There is not much progress to report. There are two opinions about where Ray is right now – one is that he should have been sent to a place with more aggressive physio, the other is that he may not be able to do physio at all until the pain from the arm goes as he is still protective of it. One opinion I can handle, two I find confusing. Where he is now is a little 30 bed former cottage hospital now used as a convalescent home or a waiting place for those going into a nursing home. The good news is today one older lady returned to her own home so Ray can too. I did see the treating doctor today and he questioned me quite extensively about how we function at home, how much extra care I think Ray will need, how I will go about ensuring that I have that in place (social worker’s job actually) and how long I feel that I will be able to continue to look after him. In most cases I said I have managed before and could do so again except that I will need much more help now. It has been great having Shirley and family here, and having them visit Ray has been good too as it helps him to widen the responses. He is still not conversing, answering mostly with a yes or no answer, sometimes just falling asleep while we are speaking to him. I understand why the staff doesn’t see why I want him home but I figure as long as I have help to bathe him he can sleep just as well here as there. I don’t think he is depressed so much as he is resigned to how he is now and incapable or unwilling to make the effort to change the state he is in. I am willing to give that time to change but how tired I get and how long I will be able to continue on with being a 24 hour caregiver I do not know. Yesterday Shirley and I went to get the Enduring Guardianship papers drawn up, it is a sad task but by putting myself there too I don’t feel as if I am doing something wrong, it is just like taking out insurance, it protects us both for when we can no longer make our own decisions. Unhappily I have to make Ray’s decisions anyway. Shirley is also my Power of Attorney if anything happens to radically incapacitate me. When I tripped and hit my head and almost knocked myself out I thought it wise to make sure someone else could make decisions in my place if needed. Mum is in a locked-down situation as one of her roommates aged 104 has shingles! I can’t go see her until her room comes out of quarantine. It is such a pity as Shirley goes home tomorrow and she only saw Mum once instead of a few times as she had hoped. Mum is so frail but somehow her heart keeps beating and she keeps living and breathing. Not that I’d have it any other way, when it is her time she will go. If you passed me in the street right now you probably wouldn’t recognise me as I had my hair permed today. Instead of it being smooth and elegant I now look as if I have a fuzzball where my hair should be but I know it will settle down and in four weeks time will look good in the wedding photos. I do want to make that day perfect for Trev and Eddie, they have been so supportive of us they deserve the very best. My job now is just to ensure that Ray as Trevor’s Dad is there sitting beside me in the chapel. I hope it is a sunny winter day like today preferably without a wind and maybe a hint of spring in the air. We were married on July 27th and everyone said it was a warm day for winter with a perfect blue sky etc so I hope it is the same for their wedding too. The little bridesmaids etc are all becoming quite excited. Christopher tried on his suit on Tuesday so we saw both him and Trevor looking very handsome. Christopher will partner Tori and Lucas will escort Naomi so all family. I guess some of us will shed a little tear eh? Thanks to all who are praying for us, it is really appreciated. It is a hard journey, and one that caregivers take alongside the survivor. I think I worry more than Ray does as he has clean sheets, regular meals, someone looking after him 24 hours a day and I just have the worry of it all. I think our family as well as the hospital staff is very skeptical about the cost of caregiving someone with as many deficits as Ray has now. It is reasonable in my mind to give it another try but for how long? Who knows?

Ruth, thank you so much for continuing your blog. I think we will all need to face what you are finding, hopefully the fun as well as the guilt, when we have to place a loved one in care. I am hopeful still that Ray will come home again but if he doesn't I will take some time to think over some of the things you have brought up in your blog. Thanks so much. Sue.

Fred, the reason Justice is depicted as blind is because none of us can "know" who did what. We "presume" innocence or guilt. I am not familiar with the case you are talking about but know we all ignore cries for help, suspicious acts, awkward signs such as bruising, crying for no reason, being sad when one should be happy etc in children and adults. And in doing so often "allow" a crime to be committed. We do owe our neighbour a Christian love that may bring the label "do-gooder" or "interfering busybody" sometimes but it is better to be labelled than to turn away from someone in need of our help. Sue.

Leah, I admire your patience and endurance. As a caregiver you understand how the waiting game works - that "try to switch of your brain" feeling we all have when waiting. I hope all is well when the data comes back on what is happening with Jerry. (((hugs))) from Sue.

Jeannie, how fortunate you can help others and in doing so help yourself. That is what I call helping the world to keep on spinning. You and Carl are legends! I helped out at a school that trained Missionaries and as a "love job" it was perfect. I helped clean the students accommodation between sessions. Funny how you can clean a room that is not yours much more cheerfully than you'd clean the same room at home! Being a volunteer is great, knowing that what you do is also helping others is priceless. Sue.

It’s been a busy week, sad in some ways happy in others. I have had my daughter and her family here since last Thursday evening and that has been great. We have had laughter, a lot of time together and traveled back and forth to see Ray. We had the spicy chicken BBQ at Trev’s on Saturday night and also had the rest of the family here for a mixed BBQ Sunday night. Now I have our granddaughter for two days to spend time with her cousins. So life comes with lots of compensations. The sad news is that Ray had a seizure last week and is still not really walking and will need a lot of therapy to get him back onto his feet. The really good news came at 4pm this afternoon. He has been transferred to a small geriatric unit close to us where the rehabilitation will take place. This is an 80 bed former cottage hospital so very different to the large hospital he has been in. They will work out a rehabilitation plan and work on getting him up and eventually home. My worry still is that he will have another stroke. I know it is six years since his last one, I also know that in 1999 he had two four weeks apart so there is always that underlying fear. He is so much reduced in energy and capability since the middle of May. I find it hard to see the difference. It really shows that every stroke is a stroke, a cutting off of what life was like before and a re-adjustment to the new situation. He is still on thickened fluids and pureed food which is another retrograde step but I dealt with that before so will do so again. With a little imagination it is not as bad as it sounds. The hospital visiting has been hard. Sometimes Ray is sitting up, awake and alert, other times he is droopy eyed and more asleep than awake. He doesn’t show a lot of communication skills now and that is a problem with sitting there for two or three hours. I have been able to use the family as an excuse for shorter visits the past few days so that has given me a bit of a break. I do so want him to respond, to look good, to act happy to see us etc but know that that is not going to happen. As usual to Ray we are just passing through his “room” the quiet place where he now lives. I took Shirley to see Mum on Friday and we had a bit of interaction. The activities officer who went to school with one of my sons was making bacon and cheese scrolls so we got to watch and Shirley got to sample the product hot from the oven. It was Mum’s 93rd birthday on Friday and I had taken in some mousse that Trevor makes and Mum absolutely loved that, I could tell by the “yum” noise she was making! As she too is on thickened fluids and pureed foods only it could not be a birthday cake this year. A few people ask me how I cope and I tell them the support and prayers of my friends helps tremendously. In my situation it is easy to feel so alone and as if no-one really knows what you are going through. In my six years on Strokenet I have come to realise a lot of people do know what I am going through as they are traveling the same road themselves. A lot of others have passed this way before me and when I am gone others will continue to come on, sad and lonely, looking for understanding, information and support and ultimately, if they give of themselves will make friends and become part of this great community. I have been involved in self-help groups before but this one is definitely different. We all come on looking for “help”. We do have the build-up of emotions and the need for support and we do feel despair and hope but eventually we also feel relief when we settle down and accept the “new normal” we find in our lives. No one can live with uncertainty forever and so we learn to live one-day-at-a-time lives. We seek help from the medical community and get pills and potions, therapy and counseling and reconcile ourselves in the end to the fact that no-one know really what is happening, at the best they are making educated guesses. We have had more pre-wedding discussions and they have today posted invitations to “see Trevor and Edie take their vows” to their friends and more distant relatives. There is no reception, now only a “close family” meal afterwards. It is hard to say what this will all be like but the good will is there to make it all special. Edie will soon have her dress, the little bridesmaids and groomsmen will have their special clothes, the Mums will too. That special person Pa Ray will appear on the day whatever that takes to achieve. At least that is more of a possibility now than it was a few weeks ago.

Yep, loved the last one...it must be hard for a thief with a fashionista for a wife. Sue.

Babs, we had the family together yesterday too as Shirley and family are up for the winter school break and to visit Ray in hospital. We worked out it is 18 months since all six little ones had been together but they seemed to enjoy each others company. I'd love to live near our daughter but I guess that will never happen as she moves every three years with the Salvation Army. Glad you had a happy day. Sue.

Julie, so glad it all went well. Sorry you are so multicoloured but all that will gradually fade and you will be a beauty once more. I am glad Larry appreciates you and is able to put that into words. I am pleased it was all a success. Sue.

Fred, national holiday celebrations, special days like 4th of July, are good days for us all to reflect on how lucky we are to be born into a country that is free and easy going and puts the welfare of its citizens first. I am glad you will be at home with your loved ones, that is a precious part of our heritage too. Just enjoy the day in your own special way. Sue.

Hi Babs, great to see you back on here. I don't do games and applications on Facebook as I prefer chatting to friends or being on here. I too have trouble paying bills on time. I think I am so focussed on Ray sometimes everything else goes out of my mind. I do have to sometimes separate Ray's time from my time though. I need sometimes to just be "Sue alone" and here on Strokenet is one of those places. I hope to see you here a lot more dear friend. (((hugs))) from Sue.

Jo, I love to crochet too. It is winter here so I can crochet more onto my rug and keep my knees warm at the same time. I am glad you are home and thank you for blogging about your troubles, hope things get better soon. (((hugs))) from Sue.

I like your spiritual lessons Asha. You often have something to say that starts me thinking. Thank you for being you. Sue.

Mike, you may be Super Caregiver but you are not Superman. Send nephew away, do not, I repeat DO NOT take him on again. Yep, we all have that "what will they do if I am not around" planning to do. Set up some lessons for your daughter on what each member of the family needs if you are unexpectedly not around and ask her to find a "buddy" so she is not doing it alone. End of lesson , big (((hugs))). Sue.

Lynn, diversify your hobbies, add knitting or painting or something that absorbs your time but doesn't cost a lot of money. Cut out paid TV if that is a big monthly saving. Outdoors you can enjoy street markets, farmers markets and those cheapie stores that fulfil you shopping urge and cost very little. A day out can be a picnic from home beside the nearest body of water, some bread, a few boiled eggs, keep it simple. I can shop a lot better now on a small income, staples for the kitchen, cheaper cuts of meat. We recycle all our birthday wrapping paper, shop ahead for gifts when it is sale time,cut back wherever we can. I think I am a much more thoughtful shopper now I have time to look around. The TV here is about eleven channels, nothing on them I like and I read instead! The computer, yes, I'm with you on that one. Eating out - not often. When I have some time I prepare extra food, freeze it and reheat when I am too busy or too tired to cook. Lots of ways of saving money and learning to live on a small budgetted income. You will get used to it and the bills will stop mounting up and you can sleep at night. Good to have you back blogging again. Keep it up. (((hugs))) from Sue.

Fred we lived out west here in Australia for three years, three drought years and then got flooded! The weather is part of the unpredictability of our great wide lands. We had eight days when the temperature stood at 110 degrees, too hot to sit as you felt more comfortable standing still in any breezeway you could find. I learned to conserve water when I was a child. What will rinse the clothes will also water the grass. We would call what you are experiencing level three water restrictions and were on level four for many years so watering the garden with a bucket kept our herbs and flowers alive. To keep cool we hung wet sheets in doorways, used ice in a bowl to wet hands and faces, took advantage of the local river for paddling and swimming, turned all lights off unless we needed them, kept fans in windows as you said, ate cold foods, avoided going out in the sun in the middle of the day as heatstroke was common. It is usually just a few hot weeks and summer heat dissipates but you've started early this year so it is going to seem like a long hot summer for you. Sue.

Hi Christine. It's great to welcome a new blogger to our blogworld. You will find us a friendly group and soon feel like family. You seem to have the right attitude toward exercise and getting as much back as you can and that will stand you in good stead. Once again - delighted to "meet" you and welcome. Sue.

I am in danger of becoming a blog hog…lol. Every day something happens and I think: “I will blog about that.” I think it is because I am really lonely with Ray still in hospital and no news yet of what they are doing to get him moving. I am getting stressed about this now as it is now 28 days – four weeks, since he actually had the stroke. I went in this afternoon and he seemed fine, he was sitting up and looking scrubbed up. I took that to mean that he had recently had a shower but didn’t ask if it was his second or third in the day. The last bad day was Friday afternoon, something seemed to be going on then as his head was down again and he was doing a kind of stuttering speech where he repeated words over and over. I was really worried about that. There are horror stories of another small stroke catapulting people into severe dementia with no pull-back. By Saturday afternoon he was speaking clearly again. I was his only visitor over the weekend as Trev was busy and really no-one else is ringing or volunteering to visit this time. His younger brother saw him Thursday and so did Trev and my nephew Bill so he has had others come. It is difficult now he has a short attention span as making a conversation with him turns into a kind of monologue about my day, my week, my activities and a few questions about what he had for breakfast, lunch and dinner. I have started the process of looking at nursing homes. It is not something I want to do but in the light of his Friday confusion and that he is really not walking yet I am not convinced that he will be able to come home. On the other hand I have also looked at having a second toilet, this one to be put into our existing bathroom, so if he does come home and it takes a while for nature to take it’s course I will have another option…lol. It is such a difficult time isn’t it? You want something positive to come out of all of this but you have the old doubts and fears returning. There is no-one who can help you go through the decision process as the one most involved is no longer able to make decisions or even help you make an assessment of the situation. Thank you to all who have sent me PMs, contacted me via Facebook or have posted comments on my blogs. I do appreciate the support you are offering me. I think I am doing okay. I cried a lot the first week he was in hospital not so much last week and this week I have got back to my old stoic self. I know this is a long slow process and I am hunkering down for the long wait. I went in to see Mum today and watched one of the aides feed her lunch. She is on a well-cooked cut up diet with mashed vegetables and lots of gravy. She opens her mouth for every spoonful, makes an attempt to chew and swallows. No coughing now and so they are including foods not pureed. She has fruit and custard for dessert. Not being a diabetic she can have some sweet foods. She still has thickened fluids as she still has some trouble with swallowing water-like fluids. Mum has been so well looked after in the nursing home. I was worried about her at first as she was very agitated at being restrained but now she sits in her jelly chair and kicks her feet to music, closes her eyes and has a snooze, looks about her, listens to the TV. It is not as active a life as I would like for her but considering her deficits now with severe dementia it is enough. And when I am there I take her for a push around the place, into the sun if I can and make sure I sit close to her and talk to her and do things like hand massages. It is a pleasant way for both of us to spend some time together. I know the experience with Mum will not be duplicated for Ray. He still has a lot of awareness and although he is physically unwell at the moment if that changes then he will wonder why he has to be in a nursing home and why he isn’t at home with me. But once he is in a nursing home and I have signed all the paperwork and paid out a great deal of money to get him there the decision will be irreversible. I am finding all of this very hard to deal with. I would like someone else to make the decision and say that it was the obviously right thing to do. I know people keep telling me I cannot sacrifice my life and my health to keep him at home, and part of me agrees with that. The logistics of looking after a man who cannot walk or help himself if you are not trained for it or set up for it are very demanding. But some part of me keeps remembering:“till death us do part.”

Congratulations Asha, yo do have a wonderful husband. All the glitz and glamour in the world does not compare to the value of a valiant heart. And that and an old fashioned courteousness is what your husband has. And you have learned to treasure his true value. You are right, he is someone very special. And you, as a good wife and mother are too. Sue.