swilkinson

Well put Fred. If there was just a tick the boxes - get the answers list we would all know exactly what we are in for, but each caregiver, each stroke survivor and the family watching it all unfold has to make do with the one step at a time deal. Thank you for your many posts to encourage survivors and caregivers alike. We all appreciate what you do here to encourage and support us. Sue.

Wonderful news Dyan, we all want the best for our kids and you sure have worked hard to make this happen for Cayden. I am so pleased he has a better rapport with his Dad too, that is so important to a boy. I'm glad you come to chat and update us there too, we love to be part of your cheer squad. Sue.

Ray did have a good birthday, quieter than the Father's Day picnic as only my daughter and family and Trevor came to have lunch with him, everyone else being busy with their own lives. I did tell them one or the other if they couldn't manage both so I was okay with it. Ray enjoyed being out in the sun, he enjoyed the fuss, the birthday cake I skilfully blended into a bowl of custard, the extra attention from his daughter, son, son-in-law and grandchildren. He was very sleepy though so it was all over by 2pm. I did enjoy the second visit by my daughter and her family in two weeks. We didn't go out to dinner this time just enjoyed a quiet dinner at home. We did watch a selection of old videos the kids love, and played on the Wii. We had a special breakfast, went to the church fete and bought some cakes and cupcakes and a variety of bits and pieces. Christopher won a bear which he presented to Pa Ray as a birthday present. They had also made "rocks" at a craft afternoon and Naomi's said "Pa rocks" and Christopher's said "I love you". Don't you just love those personalised presents? Ray had a couple fo cards from cousins and one from the sister that keeps in touch. It is as usual, out of sight, out of mind. The grandkids seem to be able to relate to Ray okay. I guess once you've seen him in the comfy chair a couple of times it seems normal. They enjoyed kicking a ball around the park and climbing on the play equipment but of course Naomi fell and came back wailing with a scrape on her knee and another on her arm. It always happens. They left from the nursing home to go back home as Shirley had a funeral interview at 7pm for a funeral she is conducting on Monday. She has been a mentor to the daughter of the person who died for the past few weeks so feels as if she is burying a friend. Today I had a horrible day, my usual sinus troubles flared up and I spent most of the day laying down so my nose would stop running. Rang the nursing home and nurse Julie, one of my favourites, said she would go and supervise Ray's lunch for me. She was very kind and empathised with me as she has sinus problems too. It is that warm westernly wind with it's load of tiny dry particles that have caused this. I've also run out of the medication I usually use so will go and buy some more tomorrow. My head feels as if it is a cement block so laying down is much better than sitting up. I did manage to get a message to our minister so hopefully someone else did my duties at church today. I was sad to miss Messy Church which I love but as good health is what I need to maintain and go on looking after Ray I need to get over this as quickly as possibe and rest will help. So I will have tomorrow at home too. Hopefully by Tuesday I will be okay as I have to go to Grandparents Day at the school Tori and Alex go to, watch Tori perform in her concert and go to the rooms and admire their work. I am more or less the only available grandparent for them now so need to take my duties seriously. The wind seems to have died down now so hopefully tomorrow and Tuesday will be fine and warm and not windy so my face begins to feel normal again. I have started to work on the garden a bit so if I am feeling better by tomorrow afternoon I will work in the garden. I need to start my Spring clean too, get down the cobwebs, sweep up the leaves the wind has brought down. Window washing would be a bit ambitious I think. It is hard to be the one doing all the clearing up but that has been the way it ihas been for the last twelve years. I just miss Ray being around to at least look at what I am doing. Ray has been in care for twelve months now. His first six weeks were officially respite of course but it is a year last Friday since he moved forn the cottage hospital to the nursing home. I read back over those blogs so full of angst and remember the social worker saying: "You will thank me for this one day." and I don't. I don't thank her for all the angst, having to fight for more help only to be turned down and disappointed. I don't thank her for the way she bullied me into thinking I could not cope when I probably would have been able to if only for a few months. Now is a different story. I look at Ray and know the words "severe dementia" apply to him. I see his vacant expression and his hands tucked neatly beneath the rug over his body, the way he opens his mouth to be fed and no longer attempts to take the spoon himself. I know that is because the medication for the seizures have made his good right hand shake uncontrollably sometimes so he has no confidence in being able to feed himself. I still care so deeply and am heart sick just watching him some days. It is so unfair to have a good man go through such an undignified end-of-life situation, and yet he seems to do so without the resentment that would have consumed me. He is still my gentle man. I came on here and saw the nice comments people had wiritten about Ray's biurthday and had a nice card from Kimmie on my email so Ray is not forgotten by enveryone. I have to be grateful for small mercies.

Congratulations! The very best news! Welome to Grannyworld...wait until you hug him for the first time, it melts your heart. Sue.

It seems we have come to a new turn in the road. Ray had a serious seizure on Tuesday and fell off the shower chair. It took four women (no men available) to right him and get him onto the lifter as he was only semi-conscious and in an awkward position under the hand basin. One was very worried as it was her first "lift". He spent the rest of Tuesday and all of Wednesday in bed. Then he had another attempted fall and possible seizure today and again in the bathroom but this time one of the carers held him up as she was directly in front of him and prevented him from falling. He has some bruising, both from the fall and from the "rescue". So, no more showers, it will be bed baths only from now on. Another step on the downward journey. I was so full of hope on Sunday and am now back to having nightmares again. It seems as usual I can cope okay through the day but the nights trip me up. I wake up tired and today I dragged myself around, off to visit Mum, out to visit Ray, back to do some shopping. I felt as if I had lead in my boots. Seems like how we celebrate his 70th birthday on Saturday will depend on whether he is confined to bed or not. I will have Shirley and co here from about 7pm Friday (tomorrow) night so they will help me assemble food etc. If it is fine we can still go outside. As long as he is either in the comfy chair, or the aides are willing for him to be in the comfy chair then we do not have a problem. I planned to visit Mum early this morning. I knew she probably wouldn't be showered but felt it better to visit her in my time than have to wait. The facility opened on Sunday for Father's Day, closed for cleaning on Monday and is now fully open again. I felt so guilty when I found out it had been open, I rang Monday and then didn't check again till today. Mum was still in bed, she was partly propped up and decidedly smelly! She didn't look uncomfortable though, just sat blinking her eyes and then going back to sleep. The carer who was doing a bed bath on the woman opposite talked to me as if he had not met me before. I heard all about his divorce. I should get a job there as a counselor! Seems he was not in favour of judges who award everything to "her". All the carers I have encountered recently are complaining that the new workload is too heavy and they are not able to do the showering etc within the timeframe allowed. That is a real worry to me as haste makes for falls and falls lead to a lot of complications. I am waiting to see what happens to Mum and Ray but will be sure to complain if I think the treatment and care they are receiving is below standard now the staff hours have been reduced. Mum was just as she was four weeks ago. As usual I have been worrying about her for nothing. It is hard not to worry. But all four ladies in her room were still much as I had seen them last. I visited with another old friend who is in the same facilty at hostel level and she said she had noticed a lot of people missing from the dining room so that section was affected by the virus too. Beautiful sunny day today but the winds, warm though they were, almost blew us out of the courtyard so I had Ray wrapped up like a mummy. He mainly slept the day away today. I hope he does spark up again soon. .

I know how scary seizures are . You will have to put some protochols in place now so you know what you will do if.... Sue.

Lynn, it is your blog and feel free to express yourself however you want to. We too are in the early stages of a son who is divorcing. His little boys seem okay with it but his ten year old daughter is suffering and distancing herself from family activities. She is a lovely bouncy girl ordinarily so it is sad to see. Just take things easy, help to get their ducks in a row but limit what you do, it is a hard enough life you live without taking on the troubles of the whole world. Our grown up kids have to see what is happening as having consequences and learn through the experience if they can. Nice to have you blogging again. (((hugs))) from Sue.

You can actually stop being a Mom any time you want...you just have to get your kids to agree they can do it on their own now. I know how all of that feels, it happened when Ray had the strokes in 1999 because, guess what, Mum was now in one spot and they could contact her any time they wanted. Just give them 20 minutes of your time and then say: "Gotta go, sounds like an emergency happening here" believe me they won't want to come over and help. Sue.

Asha, not only did you find meaning in your loss but you are teaching us to do the same. Hope kido's re-entry to school goes well. Sue.

Horselover, welcome to the Blog Community where you will live with a whole lot of people who you will come to know by reading their blogs. Yes, a lot of us, caregivers and survivors alike, are afraid. My husband Ray has had seven strokes, TIAs, seizures and fits. I am scared of anything that will add to his impairments and take away the little process thinking he has. I go every day to be with him in his nursing home and enjoy the little bit of togetherness we sqeeze out of our time each day. I wish I could tell you not to be afraid, instead I will tell you to live each day of your life to the full. Sue.

We had a brilliant Fathers' Day with Ray yesterday. I didn't know Shirley and family were coming up till Friday night but was so pleased they were making the effort. Trev and family, my special support team, I knew would have a picnic lunch with us, Steve had not said he would come at all. Sunday morning I was not on the roster for church so I almost didn't go but decided I have enough to be grateful for in any seven days so off I went. I was asked immediately if I could fill in for one of the girsl who had gone home with an asthma attack. So I quickly got into the alb etc. I wasn't really prepared but I guess things are starting to be routine now so I was okay. I managed to get through the intercessions, haven't done them for a while and only sidestepped in the wrong direction twice during the ritual. I had a quick cup of coffee and it was off to see Ray. Ray was still in his room so I wheeled him out into the sun and kept an eye out for Trevor. They came about twenty minutes late, which is understandable with a three month old baby and another child to get ready. That was just as lunch was coming so we wheeled Ray and his lunch outside and down to the park. Trevor, brawny guy that he is, handled the big chair just fine. By then Edie, Lucas and Alice were in position under a shady tree so while they got lunch ready I fed Ray his lunch. I had packed a salad so their ham and bread rolls and my salad made a very nice lunch. I'd brought an extra treat for Ray, friuty yoghurt, so he got that too.Later on Trevor went down to a local shop and got them all ice creams as well (sugar high for Ray I guess). We were in no hurry to go so we sat and talked while Ray looked around and enjoyed being with his family. He was fascinated by Alice, who laid in her bouncer with her little hands waving and face smiling, and she thought he was pretty interesting too. Just after 2pm we repacked Trev's car and I farewelled them. I went back into the facility and there were Steve and his three children busy looking for us. So we wheeled Ray back into the courtyard. Luckily I had a pile of fresh fruit still in the car so that and a couple of drinks for the kids and the coffees I made in the kitchenette for Steve and I looked very much like a continuation of the lunchtime party. He rang his sister to see where she was and when she said half an hour away he decided to stay that long. I took the little ones down to the park while the aides changed Ray. The little boys love running around in the open air so they thought that a treat. Shirley and Craig were still in their Sunday Salvation Army uniforms as they had come straight from their church service. Ray was pretty tired by then and as the aides had put him back to bed was just nodding off when they came. Steve and family stayed on for ten minutes or so and then left. Shirley, Craig and family stayed until the evening meal was being prepared for and we came on home. I think Ray remembered they were there, I hope so. Shirley and family and I went out to dinner with Trevor and family, Edie's idea for him to celebrate his first Father's Day since Alice was born, he had celebrated as Lucas's "Dad" last year too of course. He told us he got two breakfasts, coffee and toast cooked by Lucas when he first woke up (very early) and then later the traditional bacon and eggs cooked by Edie. It was good to spend some more time with them and I noticed Lucas sat near Christopher and they did some boy talk, of course they are both Big Brothers now and so have another thing in common. We did watch a kid's movie when we got home but we were all pretty tired. Shirley and family headed for bed and I came out on the computer for a while. They left to go home after breakfast this morning and she just rang and said they got home about 2pm and she would have rung earlier but they had all had a nap. Battling through city traffic will do that to you.We only said goodbye until Friday as they will be back up for Ray's birthday on Saturday, Ray will be seventy (the biblical three score years and ten) so although we can't hold a party there will be another picnic in the park hopefully if the weather is fine and warm again. I hope Ray can remember the family gathering around him for Fathers Day but if not we will all remember (with the exception of Alice) and store it among our happier days.

Fred, a new season is upon us too but the old one is not giving up without a fight! There is rain tonight and a bitterly cold wind so I guess we will have to wait a while to put on our frilly spring dresses. Ho hum! It is Fathers Day tomorrow (2nd September) so I am hoping for a fine day as we want to take Ray outside to picnic. Trev is pretty strong so between us we should have that big over-stuffed comfy chair bumping over the grass with Ray in it. Hope you fall days linger and you get to enjoy the cooler days without the cold nights for some time yet. Sue.

I don't think some conduct can be excused even if our partner has brain damage. I used to tell Ray that if he treated me badly I would arrange respite for him and take a holiday and the first time he went into respite (because I needed it, not because of his behaviour) he was "Mr Nice" for the first week he was at home but reverted to his usual sometimes unco-operative self after that. No-one can be forced to be a caregiver, no-one has "the right" to be cared for and maybe you need to say that to him. We are not servants, not slaves but equal partners. As we don't get money we deserve to get thanks and praise. When Ray got really cranky and abusive I would declare myself "on strike" for the day, do the minimum for him without speaking and rest, read, munch out, whatever I felt like doing for the day without giving him any special attention. I got one or two days of good behaviour out of that. I'd tell his doctor about the cranky in the evening behaviour and see if he/she has any medication that could take the edge off the behaviour. None of this is easy, for them or for us but it did help with Ray's care if we could rub along without too much argument. Sue.

Jessica, welcome to the blog community, a safe place to say what you need to say and get some feed-back from others. We have both survivors and caregivers blogging here, we are all in it together, this long journey to the "new normal". I can see why you would feel the way you do and I guess the sewed up lips showed me the lack of self-advocacy, the darkened eyes the incapacity to see what the future holds. But some of that insight will come to you as you progress through your recovery. Welcome, I will look forward to getting to know you better. Sue.

Ken, thanks for that gret insight into your life and a warm welcome to the Blog Community. You are a good exmple for those who are able to be self-motivated and just get on with it. You did those things you needed to do to get to where you aimed to go. I commend you on that. Now , settle in, become a regualr blogger and enjoy being here. Sue.

Debbie, I don't really know what to say to you as I have not been in your position. I only had time off when I had carers in and I never got to go back to work. I guess you really have it worked out but like most of us, regret the difference between the ideal and the reality of life. For friends who say they are going to drop by and don't? Well I had angst the first few times and some anger but then realised maybe I too did those throw away lines "I'll call in on my way back" and never did so. Mostly I rang them later, I fessed up and said sorry and knew it didn't make a difference, I had ruined their day or weekend and the friendship was going to be weakened by it. I guess you just get more cynical as you go along. I didn't want to, it just happened. Hope this week is better. (((hugs))) from Sue.

Something funny happened at the nursing home today. When I got to the NH Ray was in the large lounge room listening to the pianola. By his side sat L** who is a resident in the nursing home section and a friend now. She was Ray's partner when they played Bingo together. She backed off her wheelchair and waved me over to sit next to Ray. Behind Ray sat a row of ladies from the hostel section. One of them said in a loud whisper: "Did you see that? That's his girlfriend just moved and that one there beside him now is his wife!" Well, it was hard not to laugh out loud. Dear L** is 88. Dear soul that she is she was very contrite when I told her and said: "But I love you both, everyone knows that." And she does, because she is a loving lady and loves all her new found friends. I must say I have been impressed with today as the sun is shining and the birds, particularly the parrots, are flying dangerously low in pursuit of a new partner and not giving a thought to anyone in their flight-path. I think the courtyard mob are more upbeat, knowing that Spring is not so far off now. It is hard to stay upbeat when you visit every day and see the one you love slowly changing and not for the better. But we do try to keep cheerful. As the days go by it is sometimes hard to keep my spirits up. I had a good weekend really, I saw my older son and his three children on Saturday, it was a bit awkward as he is in his newly rented house. Then I saw the same three with their Mum on Sunday. I invited them to join me at "Hungry Jacks" (owned by Burger King) for an early evening meal. I took some cupcakes with me so we had three courses, our hamburgers, our cupcakes and an ice cream. In between the little ones played in the play house and Pam and I got to talk. It is good we were able to do that. I am their only active grandparent now and I hope I will never miss out on seeing them. I know what divorce can do to families and I don't want to lose them. I spent two hours this afternoon with Miss Alice and her Mum. I got to cuddle her for most of that time. I hadn't been able to last time as I was not sure I was well enough but today I felt really well and she was in a delightful mood so we had lots of smiles and lots of laughter too. Little ones even as young as she is love to peek-a-boo and to hear silly songs and be bounced and she is no exception. Edie says Trev sings silly songs to her too when he is cuddling her. They have some differences but seem to be shaking down well together as a family. Edie's Mum and nephew have flu so she was not able to see them this weekend. Mum's facility is still in lockdown. Over two weeks now but they have to be clear of the gastro bug for 48 hours before they can re-open. Then there is extra cleaning and they usually change all the curtains and bed linen before they re-open too. I am really missing Mum but it is giving me extra time for visiting Ray and I am getting there around Morning Tea time and can help him with that and then we can go out into the sun where I feed him his lunch so I think that is a bonus. I will fit visits to Mum in again when her facility is open again but that will cut into my time with Ray. It is always a balancing act. It is Fathers Day next Sunday ( 2nd September) so if it is fine Trev and family are meeting me at the NH and we will picnic in the park with Ray. Ray may be able to eat some cake if I mash it in with some icecream. Trev should be strong enough to get the comfy chunky chair out into the park. I don't suppose anyone else will come and join us though. Then Saturday 8th is our Church Fete, Local Government (like your County) Election Day AND Ray's birthday so it will be really busy. And maybe it will be a nice Spring day too! So I just need to keep cheerful and maintain a sense of humour.

Gerge, you and Lesley are remarkable people. You have both worked so hard, in your home and in your leisure life to get where you wanted to be. You have both shown an unusual amount of effort to do it. And I congratulate you for it. I know when you first started to blog I thought some of the therpaies you tried were not going to work but somehow you put the package together and what you do today is th result of what you did back then. Thank you for those early blogs. I know Ray never did most of what you did, wouldn't or couldn't I don't know which, but at least it enabled mre to hold on to some hope for the future. Sue.

Lenny, I am glad your hard work has paid off and your kitchen makes the house look like new. I am glad you will be going back to cooking again too. Ray used to do a lot of cooking before he had strokes and I really missed that. It was a treat for me to eat something noce someone else had cooked. Yes, do look for some new dessert recipes. It is good to learn to do something new. Sue.

Sandy, you are right, calm and practical though the day, dealing with life crisis by crisis and then unable to sleep at night because of the "bad stuff" that refuses to go away. I guess we count the nights we sleep, also the nights they have a good night's sleep as the good nights. I wish there was a solution but it is the old one as usual, one day at a time. Nancy, I find I move in and out of acceptance, that is I accept it all at a certain level but then a change happens and I have to reach acceptance all over again. Sue.

It is good to get things out in the open once in a while but ending on an optomistic note beacuse we all need to move into the future with hope. Sure both of you will not go back to the life you lived before but remember there are so many of us in that position. It does not mean that the life you lead into the future will not be good in it's new form. It is in letting go the past we come into the present and can plan for the future. Sue.

There is a good argument here for Daycare, either at a center or in your own home Nancy. After all if he is manipulative and mean already how much worse would he be if he went out for the day and you actually took some time off and relaxed for a while. At least you would be able to cope better if you had some mental and physical time off. And it is amazing how well they act in public compared to the way they act at home. Debbie is right, he will have to be hospitalized and have peg feeding if this goes on. His doctor will order it or he/she would here, as self-starvation is considered the same way as suicide is, not illegal but not a good way for a person in their right mind to act. Therefore they come under the Mental Health laws. For you it is a real Catch 22 and I hope you find some way of resolving it. Sue.

I don't use a teaspoon either and neither do the nurses aides who feed the patient where Ray is. I am sure they all go at a speed the patient can manage though, that is what dictates how much they eat. I also use a soup spoon to feed Ray his drink as he is on moderately thickened now and they don't pour. Debbie, if you do your best most people will appreciate the effort save those foolish few who insist on doing things "by the book". Sue.