Care Home

[Misprint]

How heartbreaking this illness is. We are just starting on this road, my sister has been in hospital since the beginning of February and it looks like she will go from there to a nursing home.

When we expressed our worries to the staff and also our feelings of guilt we were reassured by what they said. It is not an easy road but dementia is not easy. Is it better to struggle to look after a loved one at home, possibly at the expense of your own health, getting frustrated at all the things that will inevitably cause grief or would a better option be a care home where all my sisters care is done by professionals so that the time I, her husband and her family spend with her is quality time. When we thought about it we realised it is much better to be able to enjoy the visits, sit in the garden, go for a walk, whatever is right for you. All the time together can be positive time, no fighting to get teeth cleaned, wash, all the things that can cause problems just visits that can be as good as your loved ones health allows.

You appear to have found a good care home, it is hard, it is lonely, but you have done the best you can for your husband.

 

[Padraig]

Margaret,

Please forgive me not replying to your request.
Gringo, thank you for your PM directing me here. I've not been posting of late because I'm still fighting this long battle to survive after stomach cancer surgery. In addition our son who had bowel cancer was back in hospital with problems. I'm pleased to say I'm feeling better today especially after a good morning run. I've had to take three days off as I felt more like dying. Finally I'm concentrating on writing my story which is no mean feat. Fortunately I have retained so many records in the form of videos, photos, medical diary, letters and posts from the last year or so of my care giving that I was invited to submit on an American website.
Like you, I had hoped to find some one who was caring for a spouse 24/7 at home on their own in the very end stage of AD.
When I reflect I now realise why everyone said what I was attempting is impossible, but by then I had been doing it for a number of years she was not meant to live.
It is very frustrating to try and get across the many lessons I learned over the Alzheimer's years and the only way I know is with a book. Please God I'm given the time to complete it as I was reminded yesterday by our daughter, that I was given three months to live when diagnosed. That was two years and eight months ago!
I'm nothing special, just an odd ball who had no option in life but to make my own way alone in this strange world.
I came to the UK as a 17yr old with just the cloths on my back, never had a family or home. Is it therefore any wonder, that when I found a girl to love and be loved in return that I should not have put her welfare before mine. I'm still at a loss as to why she entrusted me with her love, but as I told her before she passed away, 'she made me whole.'

 

[stillcaring]

I just wanted to add to all the helpful comments that what really helped me cope when it was my aunt unhappy in a care home was that I used to imagine her in her pre-dementia days saying to me that if she ever got AD I must get on with my life and just find her somewhere she was safe. Our loved ones wouldn't want us running round in circles over them all day if they could understand. My nan, aunt and mum have all had ro still have AD and I could have spent most of my life as a carer, as I'm an only child and my aunt never married, but none of them would have wanted that for me.

 

[Margaret938]

I brought my husband home for the afternoon

On the spur of the moment when I went to visit George this afternoon I decided to take him home for a little while. I know I was taking a chance because I didn't know how he would react about being in his own home or indeed when he had to go back to the CH. Anyway it all turned out extraordinarily well. He was very settled in the house, never tried the doors once, although I had not locked them. He sat with me and watched television, had a walk in the garden and we had our tea together, it felt so good, just to see him in the house. When my son came at 7pm to pick us up, he was very calm and when we got to the CH we went to his room and he didn't complain about being there. We sat with him until he had his supper and then we left, he seemed relaxed in the lounge, I hope he remains settled for the rest of the night, I will ask tomorrow when I go to see him. I have done it now, and all being well I will do it again. I would like to hear from anyone else who has done this.

 

[TaraT]

Hi Margaret,
I just logged on this evening to post a thread, which I will do in a minute, however I started reading your thread and found it very moving. My thoughts are with you and your husband at this difficult time. It was uplifting to read your last post and I hope that things improve for you.

I have spent today looking at care homes for my mum, as we try to decide whether or not to bring her to her home or not (she has been sectioned). We also discussed whether to try a home for a couple of months and then bring her home....so I read your post with even more interest to see how things work out for you.

I wish you well and my thoughts are with you

TaraT

 

[Linda Mc]

Last September I made the same heart breaking decision you did and my husband too is in a lovely care home just right for him. It is 10 miles away and I visit him most days and I take him for walks and short trips in the car.

I too brought him home for an afternoon Christmas week when all our family were here, it was a highly successful visit and I have repeated it twice since and each time he has returned to the home happily. Now the weather is hopefully better, will try again.

I joined U3A to have a new interest and it is doing me good. I took the plunge two weeks ago and went away for two nights with them and had a really good time, we stayed in York. Only three people in the group knew my situation and it was so good to have a change of conversation and scenery.

I hope you too can find a new hobby or interest you can enjoy.

Keep posting and take care.

 

[Skilly]

Hello Margaret my heart goes out to you as I was in the same position 18 months ago when my dear husband had to go into a Nursing Home as he could not walk or even stand. I cried and cried and felt I`d failed him. Every day I would come home and just cry I was so miserable without him. One day I visited as Lunch was being served and I helped him with his food and I felt better I was doing something for him. I now visit at lunch-time everyday and feed him. He sometimes says a word or two which Ilike to hear. I know the staff and the other residents well and I know the staff really care about them. They talk to them about things like what was the favourite meal their mother cooked or what games they played and it`s amazing how much talk this produces. I still cry sometimes but I`m better than I was. I hope, even if he doesn`t recognise me, that he knows someone who loves him is there with him.

 

[carastro]

A very moving thread and I can understand how you feel.

You seem to have reached a sort of compromise now in taking your husband out sometimes and bringing your husband home from time to time and so long as he goes back to the Care Home happily afterwards you can enjoy his company at Home without having the full responsibility of his care 24/7.

Do try to have a little time for yourself though, the above suggestion about joining U3A is a good one.

Carastro

 

[Margaret938]

Another lovely day

Hello
I am feeling very pleased tonight I had a really nice visit with George this afternoon and evening, he was almost like his old self, laughing and paying attention to all around him. If only it could be like this all the time, I could have him at home with me. But I do know that every day can be different, this is the nature of this illness. I do count every day a bonus with him, when I can hold his hand and give him a cuddle and get the same back, I am grateful for this and it makes my lonely life at home much more bearable. Just wanted to tell someone, I had a nice time today.
Margaret

 

[Jessbow]

Hello
Just wanted to tell someone, I had a nice time today.
Margaret

Good, thats what its about. Glad you are feeling a bit better about things.

 

[CollegeGirl]

Hi Margaret, just wanted to say how moved I am by your posts. Hearing your perspective helps me to understand why my dad wants to keep my mam at home for as long as he possibly can.

I also wanted to say that I don't think there's anything wrong in living for visiting your husband. You obviously lived for each other when he was at home, so why should that change now that he lives in a care home? Your love for each other shines through and I wish for many many more happy and fulfilling visits for a devoted couple.

Xx

 

[rjm]

Hi Margaret,

I'm glad you had a nice visit with George today. I find that a few nice moments have the power to make up for a lot of less nice times. The simple joy of a handhold or a smile can brighten up a whole week sometimes!

 

[Margaret938]

Hello Margaret my heart goes out to you as I was in the same position 18 months ago when my dear husband had to go into a Nursing Home as he could not walk or even stand. I cried and cried and felt I`d failed him. Every day I would come home and just cry I was so miserable without him. One day I visited as Lunch was being served and I helped him with his food and I felt better I was doing something for him. I now visit at lunch-time everyday and feed him. He sometimes says a word or two which Ilike to hear. I know the staff and the other residents well and I know the staff really care about them. They talk to them about things like what was the favourite meal their mother cooked or what games they played and it`s amazing how much talk this produces. I still cry sometimes but I`m better than I was. I hope, even if he doesn`t recognise me, that he knows someone who loves him is there with him.

Thank you for your reply, I know that many of us feel the same about putting our loved one into care, the guilt and abandonment, the anger at this illness, and I am ashamed to say the jealousy of other couples of our age who apparently are doing very well, (thankfully these feelings of jealousy are only very occasionally). Like you I cry a lot, for the awful feeling of loss, when I look around our lovely house, the treasures we have collected together over the years, I feel so very sad.
However, I must move on and like you make the best of what we have. I am not allowed in the dining room at meal times, so I go up before tea time for about an hour then I take something to eat up to his room and have mine there, and come down after tea time, and spend the early evening with him, I will do this tonight and maybe tomorrow I will go up in the afternoon, just to alternate the visiting times. I am hoping to bring him home again towards the weekend, but I know it is every day as it comes. Lovely to hear from you, knowing your are going through the same as me.

Margaret

 

[Margaret938]

Everyday is different

After the two lovely days I had with George, the inevitable happened when I went up on Monday, he was extremely grumpy, I let him do as he wanted to walk around so I just sat in the lounge and waited for him to settle, since it was near tea time I made sure he was in the dining room and I went up to his room and had a bite to eat and came down after his meal, he was very pleased to see me and we had a settled couple of hours before I left, not quite as nice as the previous days but not too bad. He is very tired because he is not sleeping well ( which is strange because he slept like a top at home and could sleep for 8 to 10 hours) . I got a phone call today to say that he had a particularly bad night and got very aggressive with the carers. This makes me feel so bad, and upset for George and for the carers. The outcome of this is that they have taken him off Clopixol and gave him a very low dose of Respiridone to see if this will make him calmer, they say for his own good because his anxiety is making him very unhappy and restless, I hate antipsychotic drugs but if this makes him calm down I suppose it will be a benefit. Poor darling, he is very troubled at times, but on the bright side, I brought him home this afternoon and we had a very nice time, and he was very relaxed here with me, our son took him back around 7pm and he seemed to be quite happy going back into the care home. I would like to hear your views on Respiridone please.
Margaret

 

[Scarlett123]

Hi Margaret, I only joined this afternoon, but I just wanted to say your posts were so moving that I found myself welling up. I also wanted to say that I too find myself both angry and jealous at times, when I hear friends talk about their plans with their other halves, and realise they are denied to me.

I'm glad you've found a care home that ticks all the boxes. I'm going to visit one tomorrow with a view to looking at occasional respite weekend care, and hoping that it will be both suitable and affordable.

How lucky George is to have such a devoted and caring wife as you and that you have both shared, like John and I, a long and happy marriage.

Take care

Scarlett123 xx

 

[rjm]

I would like to hear your views on Respiridone please.
Margaret

Hi Margaret,
I'm sorry your latest visit to see George at the CH was not as good as the earlier two, but it does sound as if you were able to have a nice time with him today.

Sharon tried an anti-psychotic (not Respiridone) but it did not work for her, but a mood stabiliser/anti-convulsent did. In my view, the variation in response to any drug prescribed to those with dementia is so vast that it is worth trying anything under well monitored conditions. If it works, that's great, if it doesn't - try something else. Some people seem to be able to get through this journey without chemical intervention, but others need a lot of help for their behaviours to be manageable.

Best of luck,

 

[Izzy]

Hello Margaret. I've just found your thread.

It must be very hard indeed for you. I have no experience to share as my husband is still at home with me. Thankfully, although his dementia us quite advanced, he has no aggressive behaviour or mobility problems. I always think these ate the two things which might make things different for us.

My mother had Vascular Dementia and lived with us until DVD died almost 2 years ago. She was very agitated during her last year or so. She had a low dose if Respiridone and that seemed to take the edge of the agitation.

I hope you have many many more peaceful visits and nice times with George. xx

 

[Margaret938]

Hello Margaret. I've just found your thread.

It must be very hard indeed for you. I have no experience to share as my husband is still at home with me. Thankfully, although his dementia us quite advanced, he has no aggressive behaviour or mobility problems. I always think these ate the two things which might make things different for us.

My mother had Vascular Dementia and lived with us until DVD died almost 2 years ago. She was very agitated during her last year or so. She had a low dose if Respiridone and that seemed to take the edge of the agitation.

I hope you have many many more peaceful visits and nice times with George. xx

Thanks for your reply Izzy, I see you are from my neck of the wood. You are so lucky that you still manage to care for your husband at home, I would dearly love to have George at home with me. The aggression, and immobility are really difficult for me to cope with at times, I am almost 70 and had a breast cancer op in July last year so am not quite as fit as I used to be. George can walk, albeit much slower and he shuffles now, he finds it difficult to get up from a sitting position and I have to pull him up, and he is quite heavy. Not that I am complaining but it takes a lot of energy.
I would do anything to have him with me 24 hours a day, if he was calm, but this illness knows no bounds. If you don't mind me asking how old is your husband and how long has he had AD. You said his illness was quite advance, what effect does it have on him and is he on any medication?
I love your quote.
Margaret

 

[Margaret938]

Busy keeping the garden nice for George's visits

I have had George home several times since I last posted. I had him at home today for 6 hours, he was very happy to be here and the weather was so nice, I thought he would like to see what I have been busy doing in the garden. I want to keep it looking as good as when he and I did it together. Of course it is not the same for me, but I am trying very hard to keep going. I miss him being here to discuss things with me.
I asked if I could keep him longer tonight because one of our sons is an actor and tonight was his first of 10 episodes, so I wanted us to watch it together. George was very pleased when his son come on the screen. When I took him back I just left him at the front door with the carer and he went away with her quite the thing. He is so amazing, he adapts very well and I am so proud of him. I am lucky that i can still bring him home, but it is still unbearable to be without him by my side all the time.

 

[Margaret938]

Haven't heard from anyone for a while

Hello all
I haven't had any replies for a while and am missing your company. I have had some wonderful visits to George over the last week (week four in the CH), He seems very relaxed and settled, some of the time !! Yesterday was a bit of an exception, he was pretty restless and for the first time in a while he mentioned home. This is what cuts me up, to know that he wants to come home just as much as i want him to be with me at home. I have put a TV in his room now, and sometimes we just sit there and watch something together and hold hands, it is so nice. But yesterday he couldn't really settle anywhere for very long. I usually spend 2 or 3 hours with him every day between meal times and most of the time it really suits. Today he has a dental appointment, so I have asked our son to come with me for support, George does not stand pain now (he never used to get an injection before any dental treatment !) and I am expecting him to swear at the dentist a bit, I have forewarned her and she is fine with it. I hope ! I will be glad when the appointment is over. Our son has moved into his new home now so I am hoping to take him out to see it after his appointment. Wish me luck today.
Margaret