John-is in respite possibly to be permanent and I feel lik a complete heel !!

small

Registered User
Jul 6, 2010
110
0
harrow
Johnis in respite again having only come home from his last stint in respite 6 weeks earlier. I just feel I can't carry on. I reached this point 6 months ago, but steeled myself and. Brought him home again.z this time I don't feel up to bringing him home. I have health problems myself which affect my stamina , and the constant stress and lack of slEep have just about done me in.

I've already been told he now needs 24 hour care, which I obviously can't do alone. He doesn't sleep and stubbornly refuses to get undressed, washed, change clothes, socks, shoes (he sleeps in them).

Although he loves being with other people He is so abusive to me, my family get really distressed. His PSN(?) explained it was probably due to his long term memories connected with me, as oppose d to his short term memories in respite care, where he is charming, entertaining and pleasant to the other residents! When I told his psychiatrist I was at the end of my tether, she suggested permanent care home.

I am now afraid of him at night when I'm alone with him. Because he doesn't sleep he staggers around manically packing clothes in bags or ironing them over & over again. The dangers of him a falling or burning himself frighten me. Also if I try to get him to stop he gets very aggressive and forceful.

The difficulty now is I still can't sleep even though he'd is in respite, because I feel such a heel! and the decision to make his stay permanent is torturing me even though I no longer feel able to bring him home. That plus the grief at losing him is just overwhelming me. The cruelty of this disease is fathomless.

Any helpful comments or advice would be welcome.

Jackie
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
I am so sorry -such feeble words. Its a few years since now but I went through a similar torment with my husband. Lack of sleep and other things just got beyond me. My husband eventually went to a NH and although the settling in period was awful, it was the best thing for him. They cared and looked after him day and night, which meant I was more capable of visiting and caring for him during the day.

If you do have to go through the permanent care route then I suggest you start looking around now to find the most suitable place for John and you. I hope you get some guidance from local sources about the most ideal homes.

It is a tough time and I do feel for you.
 

annie h

Registered User
Jun 1, 2013
148
0
Hi Jackie,
I'm so sorry - it's a terrible decision to have to make. However, I think the answer may be in your message where you say he is charming and pleasant to other residents when he's in respite care. It sounds like he has been quite settled and contented whilst he was there or he wouldn't have been charming and pleasant. At the end of the day, because of his memory it will be easier for him to adapt to being there than it will for you adapting to seeing him there.

I found it terrible putting my mother in a home when I had to but here are some of the ways in which she benefited:
Personal hygiene was much better - they have all the specialist equipment to help with baths and showers.
No daily arguments about wearing dirty or inappropriate clothes.
Her medication was better managed (we had increasing compliance issues) so she was generally better.
Mum had become vulnerable to UTIs and in a home it's much easier for them to get on top of those more quickly.
She was safer - there was someone there to field any problems 24 hours a day.
A good home will be good at managing challenging behaviour of the kind you are experiencing.

Once you can get over the automatic guilt, you'll probably find that the time you spend with him is better quality time than now as you will be less stressed.

I really hope it works out for you.
 

PatsyAnne

Registered User
May 15, 2012
256
0
Milton Keynes
Hi Jackie I know exactly how you feel as my husband is the same. He's really stubborn and sleeps a lot in the day but is up most of the night. He has no long term or short term memory so just spends hours walking up and down the hall talking to himself. I rarely get to sleep before 4am. He sleeps fully clothed too but he doesn't like wearing shoes now. I sleep in our second bedroom now as he doesn't like me in his room.
I live in a purpose build flat within a block for dementia sufferers and I'm here as his carer. There are carers here 24/7 but he refuses help from them. They're going to start trying to integrate with him more to give me a break. If it doesn't work I will have to move out and they'll take over.
The only blessing is that he's not nasty or aggressive. He used to get agitated but he's taking memantine which keeps him calm.
Its my heart keeping me here at the moment but my head is telling me I can't cope. The decision is always going to be hard whatever way it goes and I know that there's only so much we can do. I really miss my husband as I don't know him now.
I wish you strength, love and peace.
PatsyAnne xxxxx
 

zeeeb

Registered User
It sounds like it's time, as hard as it is, for him to go permanent. You will have a whole lot of adjusting to do, but in time, you will learn to relax and sleep and recover from all the hard work you have been doing for such a long time. It sounds like it's time for you to look after you. I hope you do get a chance to relax while he's in respite. No matter which way you look at it or deal with it, alzheimers is torturous.
 

JAE

Registered User
Jul 11, 2013
16
0
Lincolnshire
The difficulty now is I still can't sleep even though he'd is in respite, because I feel such a heel! and the decision to make his stay permanent is torturing me even though I no longer feel able to bring him home. That plus the grief at losing him is just overwhelming me. The cruelty of this disease is fathomless.

Any helpful comments or advice would be welcome.

Jackie[/QUOTE]

I know exactly how you feel. I took mum to day care last Friday and just cracked, fell apart. So I arranged for Mum to stay on respite until Monday, then I sunk lower and just knew the time had come when I could not do this anymore. I then made the decision for her to stay full time. It was difficult as mum has lived with me for over 18 years. I have cried so many tears, I thought I would not stop...but I am feeling more positive now and think I am turning the corner, slowly.
You do need to think about you (us carers are not very good at that bit) and you do not realise how broken you are sometimes until you let it go. So if you feel you are at that point be prepared to be nice to yourself, take time for you, just to come to terms with the changes.
If you are happy with the home you use for respite and if this is the place you would choose for residency, there will be some familiarty and I think this helps.
:)sending a hug
 

susy

Registered User
Jul 29, 2013
801
0
North East
Hi Jackie, from what you say it does sound like he has a great time while in the home. He seems to be socialising and generally his mood is good. I honestly think, I hope I'm not going to hurt your feelings when I say this, that he is happier when in the home. His mood reflects this. No one person can possibly care for 24 hours a day with no sleep. He is violent towards you, therefore you are at risk and what for? He is happy in a home, the drs and your family think he should be in there full time. I think that this time is now. It is down to you to let go, guilt and responsibility is what is stopping you. Please for yours and his sake, let him go. You are still responsible, just able to allow others to take a massive load off your shoulders which John seems quite happy with.
I hope I havnt offended you, just want you to do the best thing for both of you xxx
 

Scarlett123

Registered User
Apr 30, 2013
3,802
0
Essex
I feel so sorry for you, Jackie, which I know is b*gger all help, but I couldn't just read and run. I think we are all consumed with guilt when we have these decisions to make, and although we're marvellous at giving advice to others, who might be in the same position, and saying "you can't go on like this" - when it comes to ourselves, here comes Mr Guilt.:(

You are obviously worn out, and afraid for your own safety, and you must accept that John now needs professional, full time care. Easier said than done, I know. When the time comes for my John to go permanently into care, I shall be exactly the same.

My thought and prayers are with you.
 

TinaT

Registered User
Sep 27, 2006
7,097
0
Costa Blanca Spain
. The guilt monster will always be on your shoulder whatever decision you make. Please don't think that you have betrayed him, but are continuing to make sure he gets the best that you can get for him.

Caring and loving don't stop when a person goes into a residential setting. They continue and are vital to maintain your husband's welfare. So please do not think you are doing this for selfish reasons. You are not!

You will have the responsibility for his care just as firmly in your hands as before and are as vital to his welfare as if he was still at home. You have to try to look at the situation from the viewpoint of what is best for him in the long run. I think you know in your heart what this is.

xxTinaT
 

petromany

Registered User
Sep 16, 2010
128
0
West Sussex
The difficulty now is I still can't sleep even though he'd is in respite, because I feel such a heel! and the decision to make his stay permanent is torturing me even though I no longer feel able to bring him home. That plus the grief at losing him is just overwhelming me. The cruelty of this disease is fathomless.

Any helpful comments or advice would be welcome.

Jackie

I know exactly how you feel. I took mum to day care last Friday and just cracked, fell apart. So I arranged for Mum to stay on respite until Monday, then I sunk lower and just knew the time had come when I could not do this anymore. I then made the decision for her to stay full time. It was difficult as mum has lived with me for over 18 years. I have cried so many tears, I thought I would not stop...but I am feeling more positive now and think I am turning the corner, slowly.
You do need to think about you (us carers are not very good at that bit) and you do not realise how broken you are sometimes until you let it go. So if you feel you are at that point be prepared to be nice to yourself, take time for you, just to come to terms with the changes.
If you are happy with the home you use for respite and if this is the place you would choose for residency, there will be some familiarty and I think this helps.
:)sending a hug[/QUOTE]
 

petromany

Registered User
Sep 16, 2010
128
0
West Sussex
Johnis in respite again having only come home from his last stint in respite 6 weeks earlier. I just feel I can't carry on. I reached this point 6 months ago, but steeled myself and. Brought him home again.z this time I don't feel up to bringing him home. I have health problems myself which affect my stamina , and the constant stress and lack of slEep have just about done me in.

I've already been told he now needs 24 hour care, which I obviously can't do alone. He doesn't sleep and stubbornly refuses to get undressed, washed, change clothes, socks, shoes (he sleeps in them).

Although he loves being with other people He is so abusive to me, my family get really distressed. His PSN(?) explained it was probably due to his long term memories connected with me, as oppose d to his short term memories in respite care, where he is charming, entertaining and pleasant to the other residents! When I told his psychiatrist I was at the end of my tether, she suggested permanent care home.

I am now afraid of him at night when I'm alone with him. Because he doesn't sleep he staggers around manically packing clothes in bags or ironing them over & over again. The dangers of him a falling or burning himself frighten me. Also if I try to get him to stop he gets very aggressive and forceful.

The difficulty now is I still can't sleep even though he'd is in respite, because I feel such a heel! and the decision to make his stay permanent is torturing me even though I no longer feel able to bring him home. That plus the grief at losing him is just overwhelming me. The cruelty of this disease is fathomless.

Any helpful comments or advice would be welcome.

Jackie

Hello Jackie, I am in the same predicament as you. I am about to put my hubby into a NH for respite and with a view to him staying. I feel mixed emotions, we have been married now for 54 years, and I feel that I am giving up. However I do know deep down that I am not coping and like you am awake most of the night, which results in me feeling shattered and then I have been recentlyshouting at him, which of course is not good for him. Well we shall both have to keep strong and see how it goes. To me, it is so final.. My children wanted this to happen ages ago as they see how it has taken its toil of me. Take care of yourself. I shall think about you.
 

small

Registered User
Jul 6, 2010
110
0
harrow
replies to your posts

Thank you all for such lovely helpful, hopeful and positive posts. Like some of you we have been together since our teens and to lose him in this way is so hard. But as you said in a way I'll be getting a different way of being with him . I can still love and care about him but let someone else do the physical caring.

My son and sisters also have been trying to get me to agree to this for ages as they've watched ME going steadily down.

I tried to go and see him today but the home was closed to visitors because of an infection. I talked to the staff and they said he had been playing his guitar for the residents and showing them his paintings. It sounds like he's got a good 'gig' going for himself already. He's also allowing the staff to help him with 'personal care' and see to his feet, which is just amazing to me.

So all around I'm feeling more positive and content that I'm doing the right thing for him, and that in all probability he is actually happier in there with a constant audience, and the care and attention he could not accept from me. Hopefully I'l start to sleep better and try to think positively about the future!

Thanks again

Jackie xx