I can't bear to put my husband in a home

[2jays]

Oh my poor girl. You sound at breaking point in so many ways. My heart goes out to you

What is happening to you all, is the most horrific nightmare time. It may not feel like it, but how you are caring for your husband is the right way to care in my opinion. You are making sure he, and you, are safe so that you can both have a quality of life. Not what either of you have planned, but no one plans to have dementia in their lives and it's the dementia that has changed the way you can care for him, it is NOT you failing to care for him. Keep that in your mind when you and sadly others doubt your choices for your man.

Huge squishy hugs

May I suggest you speak to someone from Alzheimer's support or ageuk about finances if CHC reject the claim. It has been known that those from social services don't always know the full rules concerning finances and could give you incorrect information.

More hugs xx

 

[Kevinl]

How am I going to live with these things, and with D's clothes and books?

That's exactly what I'm doing right now, packing away some of my wife's things.
It just feels so wrong
K

 

[nannylondon]

Oh Mary I feel for you I promised my OH that I would always look after him he was diagnosed 10 years ago and I managed at home until last year when things became impossible. He has been in his care home for a year and I realise now I should have made the decision earlier. Of course I still miss him but I care for him in a different way he is in a home that isn't that smart looking but has a warm homily atmosphere with lovely caring staff who have become friends.
I know it's a hard decision but please don't feel guilty whatever you decide sending you a hug xxx

 

[fizzie]

You've done a terrific job and don't let anyone tell you otherwise. Life is just too hard sometimes. You won't stop being his carer and caring for him because he is in a home - you will be just as important as you are now - you will be his main carer and his advocate BUT you will have more quality time with him and you will find more of your old self as the pressure reduces - that has to be better and sometimes different is better and sometimes it is just different. Can I also suggest that you find your local carers cafe - you will get a lot of support there from your local community and meet others in the same situation xxx Keep posting, thinking of you.

 

[Beannie]

I get the feeling that many of the swanky places spend most of their money on appearances to impress the relatives! Will your husband really use (or even notice) the hyped up facilities?
Go and look at other places and dont worry about somewhere that is a bit scruffy, so long as its clean. The best places have a homely atmosphere and caring staff. Talk to the manager and ask what sort of behaviour they could not cope with - the answer can be quite illuminating. Many places who say that they specialise in dementia wont tolerate night wandering, residents going onto other rooms or refusing personal care ie all the symptoms of dementia!

I absolutely agree with you Canary. My 63 year old husband who has Parkinsons Disease and Alzheimers Dementia is in a smallish care home it isn't swanky' but the Staff are wonderful caring people. They know his sometimes 'funny' ways and they treat all the residents with dignity and always by name. I have come to regard them as 'family' as they are able to give D the 24/7 care I was unable too.

I visited some swanky places and yes the surroundings were 'nice' and the staff were going out of their way to tell us about the activities they provide and the meal choices but I didn't get a feeling of warmth from them that I get from my husband's current care home. I am glad I went with my gut instinct. I do not consider myself any less of a carer now D is in a home but I am able to spend quality time with him without the worry.

When he was first officially diagnosed he said to me that cometh the day I was to put him in a home and not struggle until something bad happened. I kept going as long as I could but reached breaking point 13 months ago and knew what I had to do. It wasn't an easy decision to make but looking back it was the best decision for all concerned in particular my husband. He is less stressed and knows there is someone to help 24/7 at the press of a button. In fact he fell in the bathroom yesterday which necessitated a hospital visit but all was well and he was discharged and went back to the home where the staff greeted him warmly and managed to raise a smile from him..

Cyber hugs to all you carers out there.

 

[tigerlady]

Dear Mary. All of us who have husbands/wives in care homes have been through what you feel, and mostly all of us are still in some sort of limbo land where we cant really believe it came to this. I am still in our home, which people say I should sell as its too big, but its HIS home - still full of his things that no way will fit into his small bedroom in the home, and I am not mentally prepared to get rid of them. I wanted to look after him for ever, but he was always going off down the road with a bundle of clothes under his arm "going home". He got aggressive with me when I tried to reassure him that this was his home, as he was convinced I wasn't his wife. He never showered or changed his clothes (slept in his day clothes) - unless I caught him on a good day when he knew who I was and then it took hours to persuade him and help him. Mostly he refused all help saying he had already showered and he refused to have any carers in as "there was nothing wrong with him". In the end I broke down and social services brought in a team to assess him and he was sectioned, which was awful, as typically it was on one of his good days, but they did it as much for my mental health as his.

I realise now that it was for the best and he is in a good home now, where the staff are able to manage his aggressive behaviour, which mostly occurs during personal care, although he can have sudden unpredictable outbursts. He has been away for 2 years now, but my visits still trigger the "going home" syndrome, but he follows that up with wanting to see his mother (long deceased), so I know it isn't our home he wants. I still take him out for a pub lunch etc, and the staff at the home say he's fine when I'm not there.

My heart goes out to you and please try not to feel guilty whatever you decide - easier said than done I know - I am still fighting the guilt monster after 2 years. Your head is telling you what to do, but your heart is still fighting it. Just remember that in a care home there are a lot of staff to share the stress but it is too much for 1 person 24/7, even a professional carer. Best wishes for whatever you decide xx

 

[Geof]

That's exactly what I'm doing right now, packing away some of my wife's things.
It just feels so wrong
K

Still can't pluck up the courage to do it. I'm still living surrounded by my wife's things as they were on the day she left for her CH . Her doggy walking hats, scarves and gloves, her jigsaws, the cluttered dressing table and of course the 'best' clothes which she won't wear again. I always knew that I'd have to do it if she were to die before me but it just seems so wrong to do it in circumstances such as this.

 

[Marylil52]

Dear TP friends
Your support and wisdom is an enormous help. Thank you all so very much. D will go for 2 to 3 weeks' respite. If he settles he will stay. If not we will try another go at home. The CCG is refusing to pay unless he goes into a nursing home and the ones they have offered today are 20 and 28 miles away, or, the nearer one, across the board on all 5 criteria, rated 'needing improvement'. I refuse utterly to let him go there. If he goes to the Care home we have chosen and we have to pay, so be it.
One friend suggested taking our pretty breakfast plates in to him in the CH. What a brilliant idea.
Your own memories and experiences are very moving - and comforting. Thank you again.

 

[2jays]

Dear TP friends
Your support and wisdom is an enormous help. Thank you all so very much. D will go for 2 to 3 weeks' respite. If he settles he will stay. If not we will try another go at home. The CCG is refusing to pay unless he goes into a nursing home and the ones they have offered today are 20 and 28 miles away, or, the nearer one, across the board on all 5 criteria, rated 'needing improvement'. I refuse utterly to let him go there. If he goes to the Care home we have chosen and we have to pay, so be it.
One friend suggested taking our pretty breakfast plates in to him in the CH. What a brilliant idea.
Your own memories and experiences are very moving - and comforting. Thank you again.

If he qualifies for CHC... There is NO... I repeat NO way "they" can refuse to pay for it.

A lot of people who qualify for CHC are still at home, not in a care home of the financial social services choice..... Therefore..... Contact ageuk, alzheimers support, for an advocate to help you through this mine field and Mis information you have been given

There is also the "argument" to use that he needs family to visit, so an unrealistic distance for you to visit isn't in HIS BEST INTERESTS as he is a VULNERABLE PERSON who needs his family to be able to visit easily. Ageuk/alzheimers support will have the words for you to use...

Squishy hug.

 

[Geof]

Dear TP friends
Your support and wisdom is an enormous help. Thank you all so very much. D will go for 2 to 3 weeks' respite. If he settles he will stay. If not we will try another go at home. The CCG is refusing to pay unless he goes into a nursing home and the ones they have offered today are 20 and 28 miles away, or, the nearer one, across the board on all 5 criteria, rated 'needing improvement'. I refuse utterly to let him go there. If he goes to the Care home we have chosen and we have to pay, so be it.
One friend suggested taking our pretty breakfast plates in to him in the CH. What a brilliant idea.
Your own memories and experiences are very moving - and comforting. Thank you again.

Hope so very much that things work out for you and D.

 

[Marylil52]

Again so many thanks. I've contacted Alzheimer's Society helpline and a very nice woman has forwarded my query to a specialist colleague. The whole thing is baffling. But I'm not going to give up. Do you think the CCG people rely on people being too tired and sad to argue; or is it more depressing than that: a failure of empathy and imagination? Or maybe just that there's no money and they're trying to save every penny and they can't afford things like empathy or imagination (most likely perhaps). There are so many wonderful people in the NHS who are struggling along on peanuts budgets. I guess it's important to hold on to that without giving up on the fight for rights.
I've spoken to D's children and after years of denial they seem to have suddenly understood what's going on. They are being great. Hope so much it stays that way and they won't hate me for this.
D has had a good day, remembering his childhood. Perhaps in the CH they will help with things like this, so that he can find his way to some echoes of happiness.

 

[nurses8874]

i feel your pain

I know how u feel i went through all this with my dad i gave up my job my whole life was on hold to take care of him i was the one to get him in respite to give me a break i then had to explain he could no longer live at home had to explain his wife of forty six years had died my mum its so so hard ive been a nurse for twenty six years but no longer do that job u have done your best for your husband but you allso need to take care of you to there are going to be days were u feel guilty as i still do but know you have and are doing whats right for your husband its a very cruel disease pne that none of us have any control over i totally understand were u r coming from but please dont beat yourself up it will make u ill he will be looked after round the clock u can concentrate on been his wife not his full time carer i hope this has helped sending u lots of love and a great big hug xx

 

[Marylil52]

I know how u feel i went through all this with my dad i gave up my job my whole life was on hold to take care of him i was the one to get him in respite to give me a break i then had to explain he could no longer live at home had to explain his wife of forty six years had died my mum its so so hard ive been a nurse for twenty six years but no longer do that job u have done your best for your husband but you allso need to take care of you to there are going to be days were u feel guilty as i still do but know you have and are doing whats right for your husband its a very cruel disease pne that none of us have any control over i totally understand were u r coming from but please dont beat yourself up it will make u ill he will be looked after round the clock u can concentrate on been his wife not his full time carer i hope this has helped sending u lots of love and a great big hug xx

Dear Nurse
Thank you so much. It must have been dreadfully hard for you. Your Dad was very very fortunate to have such a devoted child.
D goes in on Friday - the day after tomorrow. The awful thing is that yesterday and today, with one blip yesterday, he has been a total joy: affectionate, chatty and his old self. Have others experienced this? It's making me question very seriously whether I should keep him here a while longer. Oh god this is hard.
Warm thoughts to TP friends.

 

[canary]

Sometimes it feels as though everything about dementia is designed to make us feel guilty

"D goes in on Friday - the day after tomorrow. The awful thing is that yesterday and today, with one blip yesterday, he has been a total joy: affectionate, chatty and his old self."

I wonder if you have been more relaxed knowing that help is at hand? PWD are very good at picking up body language. If you are stressed it makes them more agitated. But its impossible to remain stress-free indefinitely and if you change your mind and he stays at home, how long will it take for you to become stressed again?

 

[Shedrech]

Hi Marylil52
I'm really glad you are having some good days with your husband - they are days to treasure

however, these wonderful, easy days have not been your norm - how will you feel after a week of the really bad days?
we all question, we're bound to - but sadly your head has to overrule your heart sometimes
I was truly heartened to read that D's children have at last understood your situation, that will help you so much - this won't have been easy for them, and is a signal that you have made the correct decision
you at least need a break, so go ahead with the move on Friday - then take some time to rest and see how it all goes - watch your own health in the coming weeks, carers often find that they fall ill
I hope the move on Friday goes well for you both
very best wishes

 

[pamann]

Hello Marylil, l am sending you a bucket full of strength for Friday. It takes me back a year ago when l took my husband into a CH. The day before he was so good, l took him out for lunch it seemed a normal day, also the day l took him he was happy. You will still be there for your husband, he will still be affectionate towards you, my husband is some days. I hope you will find much relief from caring 24/7, l know l did. Let us know how you are

 

[Harrys daughter]

This is a dreadfully painful time for you iv read everyone's caring reply I have to say I admire your strength in all you have had to endure and the guilt monster im sure will take some beating but let's hope all this suport on tp gets you through this x

 

[LizK]

You will be lucky if you get the CHC funding. Peter was refused it, despite his total incontinence, inability to communicate, violence and lack of cooperation. Carers at the nursing home are frightened to go near him, and he is frequently still in pyjamas when I see him at 2,00 pm. He is on an antipsychotic drug and sedative. Tuesday he attacked the GP who called to see him. Monday the Psychiatrist from the memory clinic is going to the nursing home to see him. How ill do you have to be to get funding!!!

Liz

 

[Marylil52]

Again very many thanks to all TP friends for your thoughts and wishes. This has been D's last evening at home - unless he comes back because of trouble at the CH (as happened earlier this year) or because I simply can't bear life without him. If has been a terribly painful day.
Re the CH Funding. The bizarre thing is that the NHS will give this to D for me (totally unqualified in any way other than love, for nursing) and various carers to be at home, but won't give it unless he goes to a nursing home - a good residential home with nursing care doesn't qualify, it seems. Bonkers.
You are having a dreadful time with your Peter. It seems so wrong that someone as clearly terribly ill is not having funded care. Your account of his behaviour is frightening. I'm so very sorry.
Tomorrow is coming and it's unbearable. It feels as if we're facing a firing squad. A bit silly since D will be still alive and cared for in (I think and hope) a good place, and I shall go there every day; but it's the end of our lives together, which have been so very happy even though the early and mid stages of this cruel illness.
I'm so sick of the pain and worry and grief. But there's no escape, is there?
Sorry to whinge. Stopping now. To you all - thank you and very warm wishes.

 

[canary]

Ill be thinking of you tomorrow,marylil and holding your virtual hand.

Things yhat I found helped : When you go with him you will need to put on a good show for his sake. Staple a bright smile to your face and put on a bright and breezy act with a "isnt it it all so lovely" attitude. Admire his room, the view, the curtains ...... Express positives. DO NOT CRY in front of him and dont try and explain why he is there. When its time to leave dont do long drawn out goodbyes, find something to distract him - a meal, cup of tea, or get a carer to "show him something" and just say that you will see him later. Then leave.

You can have a good cry in the car park. You might find that going to a cafe for a cup of tea will help. Remind yourself of why you had to do this. It will get better as he settles and you get to know the staff and other residents with their families.

((((hugs)))))