swilkinson

Lavena ... go go go! :Clap-Hands: Yes you are lucky to have a loyal boyfriend and he is even luckier to have you. Sue.

Thank you Frankie for posting these. The Tozer quote is hard to accept for me. The story of the good Samaritan is a reminder that God uses those who are available and able to listen to His urgings. Sue.

You hate it just as all caregivers on here hate it. We hate the demands on our time, the complaints of the one we care for, the wanting something just as you are sitting down etc. Slowly you need make time for yourself, ten minutes to stand out in the sun, so step out and breath deep. Then later you need a coffee (tea) break so make a cup and sit down. "Not now, I am having my break". Nurses do it, you do it. Then jump up and say: "Okay, what is it you wanted?" If your Dad screams and yells sit still. You will need to do that when you have children so you are just learning early. Caregivers have some rights as does the person you are caring for. The learning curve is about getting that balance. Sue.

We’ve had rain the last few days, not heavy rain just the misty-moisty kind. It means that the mornings are much colder and the wind tells us that winter is on it’s way. Summer is now over and I haven’t even been swimming in the sea this year. I hate the thought of winter, especially that feeling of being closed in by the cold and damp. Ray doesn’t have a lot of joy from winter either as the cold affects his stroke damaged side and stiffens his muscles making him slower and more tired. This is inclined to make him say “no” to any suggestions of going out for a while. What to do when the bad times come again? I thought of that as title for this blog but I feel as if that would tempt fate, as if somehow if I say some of the things I am thinking out loud they will happen. My Mum used to be like that; if a neighbour became sick she would think it was because she didn’t call in to see her on her way past last Thursday! It is as if we think we control the world around us that seemed possible pre-stroke, now it seems ridiculous. Ray and I just had some bad days, days when he was uncooperative and I was to blame for everything. When I showered him the shower was too hot or too cold, the food was too spicy or I had put too much on his plate. On those days he never says thank you, just gives a nod as I put something in front of him. That is when I feel like a servant and not a wife. We don't at the moment get those days often but a few too many in a row and I am back into the “I AM OUT OF HERE!!” mode. Remember how you used to do that as a young married, slam the door and walk off in a huff? Well I can’t do that now to get rid of a head of steam, Ray is 24 hour care and I am his caregiver. Fortunately the last two days have been better. My problem is he gets a bit better for a while and I think he will always be that way and then suddenly he changes again and I am devastated. I have to re-learn to go with the flow and to remember not to take it all personally, it is not all about me. I like to think I am open and honest but do I try to hide Ray's dementia from the rest of society in the hope that we will still be acceptable and not get isolated. It is bad enough that he is in a wheelchair, a kind of half-man. Now with the dementia, he also has problems with thought processes, he is slow to speak and rarely answers questions. Even at Lions we are often isolated on the end of one of the tables. I don't think they mean to be rude, they just want a pleasant evening out talking to friends. Ray still appears normal to some of our friends. He is quiet, has a warm smile and always says something to indicate he is pleased to see them. He is well liked at Daycare, and doesn’t seem to mind the extra day. Of course he comes home and sleeps the rest of the afternoon away. That is because of the massive fatigue that has dogged him since the major strokes. He just gets very tired and I know that so I usually work around it. Yesterday after doing the Tuesday night chat (10am Wednesday my time) I took myself for a good long walk down the main street of a small coastal town about twenty minutes from here. Light rain didn't deter me and I did feel better for having made the effort. Going for a walk along the seafront is something I have loved to do for many years so it felt good and "normal". I like to walk but rarely seem to fit a walk into my free time; mainly it is walking around shopping centres or into medical centres. Today we went and saw the kidney specialist. Mostly good news but Ray has put on 10 kilos (22 pounds!) since the visit in October. The specialist explained that this is not good with the conditions he has right now. He insisted on raising the dose of the cholesterol tablet so I am hoping this does not bring the incontinence back. If it does we will drop it down again. Incontinence is too much for a caregiver to handle constantly and even specialists need to weigh that up against lowering cholesterol. We have to go and see our GP tomorrow so will discuss the cholesterol issue with him. We’ve had so many visits to the podiatrist, the vascular specialist, the GP and have now caught up with our regular appointments with the kidney specialist and the neurologist. With all the tests Ray has had it is all so time (and money) consuming and doesn’t leave time for the other things I want to do in life. I would like to fit a bit of living in. We did cancel the trip to our daughter’s this weekend but hopefully unless we get more appointments scheduled into next month we might visit her at the end of this month. I miss my grandkids, I like to have those long evenings to talk to Shirley and Craig too. Talking on the phone is okay but somehow it is all about this week and not about life.

The cognitive changes and the personality changes are really hard to cope with. As you say it is good to look at what triggers a bad event and find a workaround for it. I suggest for a while that if you go shopping Dad just gets a coffee and then you work from a list and if it is not on the list it is "not today, maybe another day". All this is is impulsive behaviour, he sees it, he wants it. We have an impulse control, his is now switched off. Sadly it may take a few trips to work out a strategy that works so maybe shop with others who can sit with him while you shop for the main items you need. Congratulations on your Associate's degree, very well done indeed. (((hugs))) from Sue.

Kimmie, welcome back to the blog community, remember there is a lot of support here. I hope telling your story here helps, it is therapeutic as Asha has always said to put it down and read it back. I guess as you say millions share your situation to a degree but none of us can be your strength and courage but we can be your support. We do care about you, you have been a wonderful support to many over the years and now whatever we can do let us help. (((hugs))) from Sue.

Ruth, Ray and I did water therapy for some time and it sure helped his walking. You and William are a good team now. Ray sings in church too, not much volume but his lips move and he is definitely singing. I was much encouraged today when the nurse who runs Ray's Daycare said he did really well with their crossword puzzle today and she was really surprised. I don't do intense therapy as you do but I do make sure Ray has some exercise every day and plenty to keep his brain working. Sue.

I am sure most of them contained what we would think of as an illegal substance such as the juice of poppies. Maybe even some of those wayside herbs remembering that digitalis, once used as a heart medication came from foxglove seeds. There are a lot of cures out there that western medicine has never even investigated so who knows what the next generation will be taking...pink pills for pale people - iron tablets do you think? Sue.

Fred, what many people are mourning is both paralysis and loss of specific movements but also the change of lifestyle that not being able to work, get around, maybe even communicate or thinks straight brings. Some have marvellous support from family members, children,friends, colleagues and even bosses but many do not and the survivor (and caregiver) feel cut off, isolated and abandoned into a new world that is so unlike what their life was like before. I feel sorry for the young soldiers returning to your town from service overseas with injuries and loss of limb and hope they get the love and support they need to go on living fulfilling lives. Sue.

Jeannie, so pleased things are working out for you and Carl. The therapy sounds like it is really improving your ability to walk and stand. I like the sound of the fresh pasta - yummy. Spring there sounds nice, buds and blossom and hopefully some warmer weather soon for you - Happy Springtime. Sue.

Mike and Bernie, so pleased to hear all your good news - congratulations,all your hard work is paying off at last. As Ruth said you are a truly amazing couple. (((hugs))) from Sue.

Here are some emoticons to describe how I felt just reading this. :happydance: :You-Rock: :laughbounce: The street clothes are a great idea, I kept Ray in those all through, the sweats are only for lazy at home days or when he is sick. Wearing street clothes for Ray makes him ready to take out so I am more able to go out when I want to. It is more work, for him and for me, but it is worth it to "normalize" the situation and help him feel he is still the man he used to be. And people still tell him how well he looks and that is partly due to the fact that he looks well-presented. Sue.

Natasha, I almost welcomed you to blogworld but I see you have had a few entries, just nothing recently so instead welcome back! I have heard of moyamoya and realise it is a serious condition. But you found someone able to do something constructive about it and had some surgery to make your life better. Congratulations on your attitude, living life to the fullest! Hope it works out a wonderful life from hereon in. (((Hugs))) from Sue.

Lavena, your Dad is just venting, everyone does, you don't have to be a stroke survivor to want to give up. At least in his debilitated state your Dad has a good reason to feel that way. Just tell him he is okay, safe, looked after and tomorrow is another day. Remind him the worst is over and things can only get better. Keep telling him you love him and you are glad he is still here. (((hugs))) from Sue.

Long, long ago, back 41 years ago in fact I was pregnant with our first child. Somehow I picked up food poisoning and for twenty four hours or so rarely left the bathroom. I laid on the floor, went into the shower stall or alternately put my head over the basin. I was really, really sick. My husband Ray rarely left my side, as I was sick he went off and got clean clothes for me and I washed myself off. In the end I felt better and got out of there. Sometimes when I have been cleaning up Ray over the last few years I have thought of that time. He didn’t complain about helping keep me clean, so why am I complaining? My guess is that it is the “always” factor – I feel as if I am always doing it, showering him, washing his clothes and changing the bed. But it in not true, each incident is separate and each time I need to remember that long ago, he did it for me. It is the constant nature of caregiving that gets to me and probably to most long term caregivers. There is no let-up. The person you look after does not wake get up one morning and is well for a day, strong, competent, and cognitively sound. You wish they would, you dream they could, but it doesn’t happen. Just like a survivor dreams they can walk and run and not fall over, the caregiver dreams life is back to normal and cries. Or I do anyway, not often but sometimes, after one of those vivid dreams, that life has suddenly returned to normal and Ray is restored to full health again. Ray has been only occasionally incontinent of late, always wet but not soiled now. The changeover from metformin to insulin did that, just as the kidney specialist said it would. Giving him insulin twice a day, checking his blood sugar etc is a nuisance but it is better than constantly doing laundry. I wish the urologist had been as successful with the fluid problems but he wasn’t. Some things you just have to accept. We went to the orthoptist and got the new AFO (brace) today. The disadvantage of the new one is that I will have to put it on as it has an ankle strap as well as the one at the knee. This is to make doubly sure there is no movement and no friction so another diabetic blister does not happen. This means a change of routine for me and for the carers as he cannot put it on tightly enough so we will have to do it. I will probably complain about that from time to time as it is another “must do” and I have a lot of them. I get tired of doing all the things I have to do and I get upset when someone pulls me up on something they think I should have done. The orthoptist doesn’t like Ray’s current shoes and asked if I thought them satisfactory. He would like me to buy a much more expensive brand and have them professionally fitted which can be quite expensive. I will probably have to do that. The same problem over and over, Sue must do this, Sue must do that. If Ray gets another blister it will be Sue’s fault. I guess that is right. Mum was funny yesterday. I was with her for an hour and a half. For once when I put my hand in hers she gripped onto it and when I spoke she turned her head to face me. The therapist was doing hand massages. She turned up some more lively music and we started to talk. Mum would turn her head to Michelle when she spoke and back to me when I spoke as if she was following the conversation, she occasionally made some noises herself as if she was joining in. All the time she held on tight to my hand. It was the first time for ages I felt as if she was an active participant in what was going on. It is not often I leave the nursing home feeling better than when I went in but I did yesterday. I have to “take the swings with the roundabouts” as my Dad used to say. I think that means you get to have what you like and want sometimes and other times you just have to have what is available. I understand that. Caregiving is a bit like being at school, you might not like what you have to do but you have to do it anyway, day by day, and in the end you find it was giving you an education.

Lydi, I think my Dad's family would have been like that too, Irish and hearty with it. I only met two of his brothers and one sister but I bet if ever all seven got together it would have been very noisy. I went to a 21st birthday party and fell asleep one year when I had been ill with viral pneumonia. I woke up to find everyone had gone outside and lit a fire and left me alone in the house. I got teased about that for a while. Nice to be part of a large, happy family. Sue.

Jeannie, you and Carl are doing well as a team. :forgive_me?: You have put so much into your recovery and now that is showing results in the way you look after Carl. You deserve a lot of praise and here it is :You-Rock: from me. I hope you feel satisfied that you are doing all you can for the moment. Just don't get too tired yourself. (((hugs))) from Sue.

Debbie I agree - all of the above! Cherish the moment, store it in your mind for when the blue times come. Sue.

Yes indeed, baby steps, small achievements, small changes in your life. I am glad you went to Worship service, you can choose to go or to sleep in. You will find you are more inclined to want to work in the Sunday school or to contribute in some way once you are more regular though. You will know when that is. I think it must be so hard not to be able to drive when you so want to. I felt so sorry for Ray when he found out he would never get his licence back, it really was traumatic for him as he had made driving so much a part of who he was. Sue.

Well, please accept my apologies Tuesday night chatters as I missed chat as I did go to Camp Breakaway with Ray. I wasn’t notified that we were accepted into the Camp so I just went on with Tuesday as usual and they were all frantically trying to find us it seems. Even going so far as to ring the local hospital “just in case”….lol. I had some forms early in the New Year so knew the camp was on but when I wasn’t notified we were on their list I just decided they must have filled it without us. When the organizer caught up with me it was 4.30pm and I did a hasty pack and up we went. It meant we missed the afternoon entertainment but were there in time for dinner. It was sad to learn some of our former friends were now in care but hilarious to find out a 92 year old former roommate of Ray’s was now married! He married his 94 year old girlfriend and they share rooms in a retirement village now. Proves there is hope for all of us! We had two lovely blue sky days and I found a sheltered corner after lunch two days in a row and read a book. Only the Readers Digest condensed kind but it was nice and quiet and restful and peaceful and someone else was keeping an ear open for Ray to buzz for help. Mind you the second day I was the one who stopped him from sliding on the floor, he was trying to get up by himself and got stuck across the bed and said he couldn’t reach the call button! He was so lucky I came back when I did. I like the way one of the carers greets Ray with a slap on the back, a joke, a story or two and his undivided attention. Ray loves the way Chris calls him “my mate” and treats him like a friend for the whole three days, as if they are buddies off somewhere together. Ray smiles and laps it up. This could be the same with male friends and the boys if only they could put in the same effort Chris does to make Ray feel welcome and wanted as a person. Bless him for what he does. Being away from home puts a lot of things in perspective. From this Friday night till Sunday afternoon the Camp Breakaway staff are hosting a Camp for Families - parents and siblings and terminally ill children. It is a huge job with twelve families, 13 babies and infants and as many siblings, three separate settings, three teams of workers all combining to take the pressure off suffering families. I felt so blessed that my own kids are so normal. That they grew up and had families of their own and gave us the blessing of grandchildren. The staffers are so good, we have been so many times now that we know almost all of them and so it is like visiting a distant part of the family, catching up with news, sitting sometimes with a couple of the staff at the table for meals, sharing part of their stories as they also share ours. I can’t overestimate what that does for me as a person and a caregiver. I get so much emotional support from them. So here I am home again. I did the Thursday night West Coast chat and it went well with six participants all together. We talked as usual over a range of subjects. As we go we will build a family feeling there too. As we have on Tuesday nights. A friendship is build like a wall, one brick at a time so as we come back again and again we add to our knowledge of each other till we know the names of the chief people in the lives of others and can ask sensible and sensitive questions of each other without fear of being off target. My son told me he prefers real friends to cyber friends. I think cyber friends are real, bound together by mutual need and mutual trust and respect. I think cyber friendships, like the old pen pal system, are a good way of drawing like-minded people together. I am not able to visit a friend locally at 11.30pm but I can chat to one of my Strokenet friends on Facebook at that time. They might be starting the day as I am just finishing mine but what does that matter? I have my grand daughter Tori here tonight and we will take her and Lucas with us to the Church fete tomorrow. They are both good at spending my money so I can be very generous with their help. They get on pretty well together and both know a few people at church as they sometimes come to Sunday school. Tori is growing so fast now, amazing how mature she looks at almost ten! I guess society is that way now. Children don’t remain children for long; they grow up way too soon. So I will enjoy her visit while she still wants to come here. Hey ho, hey ho it’s into life we go.

Wow Patty, that is a hard choice to make. Suggest to your menfolk they need to make some changes before you go there so you can be independent. I am sure this summer would be the time to do it, if they love you and want to support you. I've made a lot of changes for Ray, some I have mourned, some would have happened anyway sooner or later. Thanks for the update, each blog is cherished as is the writer. :friends: Sue.

Fred, glad you are doing some spring cleaning, here what goes out on the curb is picked over and a lot of it finishes up in someone else's garage. Recycling eh? I guess I should do some autumn cleaning...sigh. Sue.

I went looking for the pictures of the new glamorous you, where are they. You know what to do with Bruce to motivate him, just keep on doing what you are doing and things will get easier. Sue.

It sounds as if this is very timely. Strange how things do work out for the best when we allow it to happen. Will keep you in my prayers too. (((Hugs))) from Sue.

MaryJo, days off to relax and regroup are needed so I hope you feel stronger when you have had a bit of low tech respite. I call it that when I have a snooze! I try to have a couple of days a week off when Ray is in hospital once the crisis is past. The operation should go well, they do a lot of them here and apart from a long convalescence don't have much trouble with them. But as you say, Dan is weak now. Will be thinking of you and continue praying for you both. Sue.