Pete;2 weeks in CH

[LYN T]

Hi

As many of you know my Husband, Pete, has been in a CH for 2 weeks now. I thought I would give you an update.

Pete settled well-so well I said to one of the managers that I would have fought to keep him at home if I could have foreseen how placid he would become. The manager said to me it was a good job that I couldn't then! They are all so lovely there. The manager said that they go home after their shift, whereas I couldn't! After not sleeping for 3 whole nights/days P is now getting some sleep at night, although he still wakes up about 6 times. The night carers tell him it's still night time and put him back to bed.

P lets the carers wash/change him (doubly incontinent) and he doesn't spit out his meds.He eats everything put in front of him and has a little doze in the morning and afternoon. The carers love him! They tell me he has a sunny smile and is a gentleman.

He's only once shown any aggression/agitation which was the day before yesterday when I left him to go home.We had been updating his photo album and he started to tear out the pages/photos.All he would say to the carers is 'that was a different life' (most unusual for P to be understood) We had had a very pleasant hour putting the photos in the album so it was absolutely out of the blue.I think it was a rare moment of realisation that he had once had a 'complete' life. So sad. Anyway I told P I would take the album home to find some more photos and bring it back on a daily basis so hopefully that will solve that problem.

Monday we walked down the road to the beach to get an ice cream. Unfortunately, even though the walk was only a couple of hundred yards Pete struggled (he shuffles and his head is on his chest when he walks) so I will attempt to use a wheelchair next time. Today I will take him for a shorter walk to a cafe where we can have some coffee and cake.

I visit everyday and sit with him while he has his meal;the staff are grateful that I do as P has to be reminded that food has to go into his mouth (with no prompting he just stares at it) I take in chocs and fruit and give him a hand massage everyday so the time goes by quite quickly.

So that's our life to date.Separated by AD but still trying to have good moments together.

Thank goodness I found the CH that P is in. The care is first class, it's homely (shabby round the edges-but P doesn't notice that.) The staff are friendly, very competent and sympathetic. We are becoming friends.

All I have to do is kick that bl***y guilt monster off my shoulder!

Have good days if you can.

Take care Lyn T

 

[Izzy]

It sounds like you've found a great place for P. I'm so glad he has settled. Enjoy your cake and give that guilt monster the elbow!

 

[Helen33]

Dear Lyn,

It is so good to have an update on what is happening with Pete and yourself. The CH sounds marvellous and must be so reassuring for you.

I don't know why that guilt monster would be on your shoulder at all. I reckon it must have landed on the wrong person. It will jump off when it realises you aint going to feed it

Love

 

[Big Effort]

What a wonderful lady you are, Lyn

Dear Lyn,

It all sounds better than you could ever have imagined. He is settling, one little display of aggression (just to remind you he can be like that so you don't indulge in fantasy of having him home), and lots of kind, competent carers about. Also he copes without sleep, but you don't...... imagine how you would feel coaxing him back to bed six times a night. You, dearest Lyn, would be very tired now and your posts would be different if he were under your 24/7 care. Good news for Pete.

Wow. I bet you wouldn't have expected this a month ago.

But when I read on, the guilt, and then this:

So that's our life to date.Separated by AD but still trying to have good moments together.

Now, here speaks our poor Lyn. The wife who is grieving without a death, separated and alone at home. Not through either of your choosing. You are so loving, and I am sure that the good moments are better moments than they otherwise would have been. I salute your courage and character to plough on, and this is the mark of real love, standing by your man despite a wall of adversity.

If Pete were less ill this is what he would be presenting you with today when you arrive to visit him:

But we know he can't make these gestures now, and we cannot blame him, so I hope you won't mind if I do it on his behalf. I don't know Pete, but I know he would do things like this if he could.

Big big hug Lyn. Two weeks down. Pete is being wonderfully cared for. And you are still here, posting, adapting. So go and kill that Guilt Monster - he is a figment of your imagination. One thing you don't need to feel is guilt. Hugs and more hugs, from someone who admires you more than I can say, BE

 

[Witzend]

So glad and relieved for you, Lyn. Lovely to hear he's settled so well.

 

[flowerpot]

I'm so pleased Lyn that Pete has settled and you must chase that guilt monster away My FiL would get angry with photos and tear pages out of books. I used to take him books with pictures of places that he'd visited or lived and I think that was the reason It maybe triggers some memory but they can't quite grasp it so anger and frustration are the result!

Take care Lyn xx

 

[leedsfan]

Hello Lyn,

Thank you for the update, it's good to hear from you. Are we all sharing the same guilt monster? Think we should round them up get a contract killer to waste them! We couldn't do it ourselves we'd feel too guilty.

Sounds like you are having some lovely visits with Pete, this is only possible because you are not strung out with the 24/7 caring, and all that goes with it. You are still husband and wife nothing will stop that, and lovely BE 'got me' with the beautiful bouquet she posted from Pete to you, bet there's been a few tears this morning!

Keep your chin up love, you are doing brilliantly.

Jane x

 

[LYN T]

Hello Lyn,

Thank you for the update, it's good to hear from you. Are we all sharing the same guilt monster? Think we should round them up get a contract killer to waste them! We couldn't do it ourselves we'd feel too guilty.

Sounds like you are having some lovely visits with Pete, this is only possible because you are not strung out with the 24/7 caring, and all that goes with it. You are still husband and wife nothing will stop that, and lovely BE 'got me' with the beautiful bouquet she posted from Pete to you, bet there's been a few tears this morning!

Keep your chin up love, you are doing brilliantly.

Jane x

Thanks Jane and everyone else.

Too right there were tears when I saw BE's flowers.Loads of them! And I'd just made an effort and put make-up on !

BE-you must be psychic! Pete used to buy me loads of flowers-always with pink roses included. They are so pretty I could almost smell the perfume.

Didn't make the coffee shop with Pete today.We went to the beach again, but this time I pushed a wheelchair in front of us just in case P got tired.But no! After strawberry ice cream (in a tub) he walked there and back.P didn't realise I was pushing a wheelchair. I told him we would take a 'chair on wheels' in case the seats at the sea front had been taken. It worked!

Tomorrow it's definitely coffee and cake. A good few hours today.

take care

Lyn T

 

[Saffie]

How lovely to have a nursing home so close to the beach Lyn. What I wouldn't give to be able to wheel Dave to the see the sea. That is wonderful and you have chosen well.
It all sounds very positive. When you feel that P could have come home, just remember Christmas. you have done the right thing - for both of you. XXX

 

[LYN T]

How lovely to have a nursing home so close to the beach Lyn. What I wouldn't give to be able to wheel Dave to the see the sea. That is wonderful and you have chosen well.
It all sounds very positive. When you feel that P could have come home, just remember Christmas. you have done the right thing - for both of you. XXX

It was lovely Saffie

I was on quite a high when I got home and even feel as though I could take P for a ride in the car and see a place where there are Deer roaming around. I would have to put him in the back seat as he tries to put the hand brake on when I'm driving.

I'm going to take things slowly and do a few more small walks for a few weeks. I don't want to wait too long though as P's AD is so fast acting that I want to make every day special for him.

I'm sorry that the sea is not close to your Husband's CH-is there anywhere nice you can go? That's a secondary consideration when our loved ones are not at home. It's the care that really counts-that and our peace of mind (as much as a carer can have)

Thanks for your wise words-as always

Take care Lyn T

 

[Margaret938]

Hello Lyn
This could be me writing this about George. I have experienced the good days and the bad days, but to now the good days outweigh the bad days and I am grateful for this. Yesterday was not so good, he was not aggressive but very restless and I found myself having to walk about all over the place and getting nowhere. I even took him out for a walk, but that did not help much. (I am not so lucky as you with the beach and cafe close by) George is like Pete, he starts to shuffle and get stooped when he gets tired.
We are two of a kind, knowing that in our heart of hearts we have done the right thing for our darling husbands but feeling the enormous guilt that goes with it. I know that everyone tells us to overcome the guilt, but it is no as easy as it sounds... is it?
When I have a bad visit with George I feel so drained of life, I just want to curl up and die because I feel that there is nothing to live for. Then I go up the next day and George is back to his old self, he has always got a ready smile and a wink for all the care staff and like Pete they all think he is lovely, which he is !! He very seldom every feels down and never did (unlike me) which is a good thing.
BE is so very right, you have done the right thing for Pete, he is happy and well looked after (like George) and the 24/7 care by yourself is no picnic. When I am with George on a good day, I am like you I have the fantasy of binging him home, but that is all it is a fantasy. I am afraid we will just have to soldier on and make the most of the good times Lyn.
Take care
Much love,
Margaret x

 

[LYN T]

Thanks Margaret

I often think of your posts and how you cope so well-even bringing your husband home to potter about in the garden.

I'm afraid my elation has begun to fade ( not that anything bad has happened-just that P is not here) So I'm going to give myself a good talking to and take the dog for a walk to get rid of the cobwebs!

Take care Margaret

Love from Lyn

 

[Pross]

Lyn, so pleased to read your update and to hear how well your husband is settling in to the CH. I'm all for shabby round the edges if the staff are caring and good at their job. It must be very lonely for you though and I bet you're feeling tired even though you are able to sleep undisturbed now. It's the letting go of some of the anxiety and tension.
So glad you are able to have such happy visits with him.

Pross xx

 

[Saffie]

I'm sorry that the sea is not close to your Husband's CH-is there anywhere nice you can go?

The home is just inside the forest Lyn so there are beautiful places to visit, but by car.
Dave is in a special chair for the few hours a day he is allowed up and has to be hoisted everywhere. He has a wheelchair which he was given in the general hospital when he was expected to return home though of course he never did and this has been used when he has gone in the ambulance to hospital appointments. However, they have pulleys and things to keep it safe and of course he can remain in it whereas in a car, he would have to be hoisted into a car seat. Even if that was possible, he wouldn't manage to stay upright on the seat. So a non-starter I'm afraid.

He did enjoy his ambulance trips though they only went though the town! Apart from that, it's just an occasional trip to the garden downstairs - and that's quite rare as he usually sleeps and the special chair is so heavy, it's a nightmare to push!

 

[jackwilson]

dear LYNT
I am so glad pete has settled in the ch, I have been looking everyday for your update, its great to see them so settled in but when we come home to the empty house and they're not here with us everything hits us all over again, I can so identify when you say 'the elation has begun to fade' the happier we are when we are with them while visiting, the sadder we feel when we sit here without them, loneliness swamps us and wont leave us alone. yes we know we have done the right thing for them but as Margaret said the enormous guilt that comes with it is not so easy to overcome and no matter how many people tell us we have nothing to feel guilty about it makes no difference to how we feel. how can we stop missing our husbands? there is no answer to that one, we married in sickness and in health till death us do part and that's a vow we stand by.
Margaret I thought I was the only one with the fantasy of bringing my husband home, like you I know it is only a fantasy but I can still hold onto it and even my other fantasy of 'maybe the doctors have it all wrong'
take care
xxx

 

[LYN T]

Margaret I thought I was the only one with the fantasy of bringing my husband home, like you I know it is only a fantasy but I can still hold onto it and even my other fantasy of 'maybe the doctors have it all wrong'
take care
xxx

I still have a feeling of bringing P home to die. I've even discussed it with friends.That's where I want him to be-with me.I'm not having a fantasy or being morbid. As long as it's feasible and it wont disturb him that's what I want to do. Only time will tell.

Take care Lyn T

 

[Saffie]

The way from the home to the hospital passes a couple of miles not far from where we live and whenever we pass the signpost to our village I want to say "Please just take us home". I would so love Dave to be able to come into the house - just once - as he hasn't been back since the day he was rushed in for what turned out to be his emergency amputation.
We left the surgery, popped home quickly to put Dave's overnight things in a bag and left -but not thinking for a moment that, for him, it was for ever.
O dear, it's hard to write that even after not far off 3 years.
If he could come in and not recognise it as home, I would be satisfied. I would just like to give him the opportunity as he was so desperate to come home when he was in the hospital. However, it's never going to happen.

 

[LYN T]

The way from the home to the hospital passes a couple of miles not far from where we live and whenever we pass the signpost to our village I want to say "Please just take us home". I would so love Dave to be able to come into the house - just once - as he hasn't been back since the day he was rushed in for what turned out to be his emergency amputation.
We left the surgery, popped home quickly to put Dave's overnight things in a bag and left -but not thinking for a moment that, for him, it was for ever.
O dear, it's hard to write that even after not far off 3 years.
If he could come in and not recognise it as home, I would be satisfied. I would just like to give him the opportunity as he so desperate to come home when he was in the hospital. However, it's never going to happen.

Pete never asks to come home now. I don't think he has any concept of home. As long as he's not going hungry and has smiling people around him he seems content.

You have had such a hard time Saffie-I understand how difficult it must be for you even after 3 years. It doesn't get easier does it? This coming saturday it is 1 year to the day that I was told P had 'moderate' Alzheimer's. It was a friday the 13th would you believe? I won't bring P back home. He hardly lived here anyway. Our last home he lived in for over 30 years and he has no memory of that either. I'm sorry you have so much trouble with the wheelchair-how you must treasure your times in the garden together.Even amongst people who have been dealt a terrible hand yours must be such a burden to bear.

Love from Lyn T

 

[Loopiloo]

Dear Lyn

Thank you for your update, I have often thought about you and Pete and wondered how things are. They do sound good and what a relief that he has settled in so well. It took my husband over a year and a bit to settle into the care home. He has been there two years and one month now but it feels much less to me. His despair and anguish were so painful to witness. I ached for him.

Recently on a visit he asked me where I had been - his speech is now mostly incoherent but occasionally a sentence or two comes out. Caught off-guard I thoughtlessly said "at home" and he became agitated, the word 'home' coming through his garbled words, yet he has not mentioned home for a very long time. Fortunately I managed to steer him away from 'home' and when I left him he was again more content, and very sleepy.

Reading what Saffie and jackwilson and Margaret wrote had me in tears, it could have been me writing. Being home alone is extremely difficult and I don't think I will ever overcome the heartbreak of that.

For a long time I wanted to bring him home, seriously considered it. But as his dementia worsened, a second fracture rendered him immobile, etc., etc., I eventually realised and accepted that his needs were beyond my ability to care for him at home. But the liivng apart, me here and him there, is much more difficult and I can find no acceptance. I have tried, but.....

After years at home and with increasing aggression and all else that dementia brings, in the care home my husband started to become more his previous loving self towards me, showng and voicing affection. It was wonderful, like a miracle, and we did share some lovely visits. They are becoming infrequent now as dementia takes over more and more. He sleeps a lot. But those precious good visits still comfort me, and even now there is the occasional window of his awareness which sends me home with a lighter heart. For a while.

I am delighted for you that you are having mainly good visits with Pete. Cherish them, Lyn, you just never know how this horrible illness may progress and these times together are very very precious. It is lovely that you can go together to places in the real world and have some 'moments' like those you describe.

Thinking of you both.

Love
Loo xx

 

[grobertson62]

Hi Lynne
Its good to hear that you too found a good home and Pete has settled well.
As for the guilt monster. Speaking from experience it does get better.it takes time.
I cant begin to tell you how many times i thought it was wrong for dad to be in a nh.
Now with hind sight 5 weeks after dad died i know how fortunate we were to have the 2 years together. An opportunity for us to just visit and devote our time to just dad.
So please give the guilt monster a kick

I hope things continue to go well
Gill