New Beginnings?

[Skye]

I thought I'd better start a new thread, the old one about John's infection seems aeons ago!

He seems to have settled into the NH well, and is improving every day. He's almost back to full mobility, though a bit wobbly, and is sitting up to table eating with knife and fork. He's totally incontinent still, but they asked me yesterday to bring in underpants, so may be going to work on that.

I went in this morning (to take the pants) and John was sitting having breakfast. He had juice, porridge, bacon and eggs, and two jam sandwiches!

I had a word with the charge nurse, and said I was very unsure if I'd made the right decision, I thought I could manage him at home. He said no, John's still very difficult to deal with, and will only do what he wants to do -- mostly eat and sleep!

I had a telephone interview with the local paper at lunch time about the Nice guidelines, and they wanted a photo to go with it. I rang the NH, and they had John all spruced up ready whan I went in. Unfortunately, he was a bit stroppy at having to sit still, but we managed to get a few. Then he went in to an art class and I came home. I had a word with the activities co-ordinator, and she's going to try to get John colouring again. She's already had him out for walks. She's going to work with him mainly one to one, because of his language problems.

All in all, I'm delighted with the NH. But I still come home and cry. I can't get over the feeling that I've let him down.

 

[DeborahBlythe]

Dear Hazel, everything you have posted shows that you have found a very good home where John is making improvements and is likely to be given appropriate care and sensible stimulation. That's really brilliant news. I'd say that far from letting John down, you have done the very best thing that you possibly could do. I am amazed that everything has gone so well, and very impressed with how you have managed it all. Don't cry, dear Hazel. Just try to relax a little and to rest. There never seem to be any easy answers to the dementia challenges but if ever there was a time to re-gather your strength, it's now. Nothing is set in stone necessarily, but you need to think about yourself whilst you can and make the most of the respite that the NH is bringing. Much love, Deborah x

 

[Mameeskye]

Hazel

(((((hugs)))))

Never feel that you have let him down..you most definitely have not. (I know, it is easeir to say than to believe!) You have done the best thing possible and will hopefully provide both of you with a good quality of life with a reduced amount of stress.

But it's back to that phrase, it isn't easy.

Love

Mameeskye

 

[BeckyJan]

Dear Skye:

I cannot help you feeling how you do ie 'like letting John down'.
It is not true as you know - you have done your very utmost to help and keep John at home.

You are now seeing him improve and thank God for that. In the NH there is a team of people who are able to contribute towards John's care. It is impossible to expect that of yourself - no human being can do everything alone.

I wish I had useful comments to make regarding your going home to cry. I understand and it makes me sad and I would love to take that away from you.

Take care and best wishes Jan

 

[Tender Face]

I had a word with the activities co-ordinator, and she's going to try to get John colouring again. She's already had him out for walks. She's going to work with him mainly one to one, because of his language problems.

Hazel, what comes across to me, and I'm sorry if I've got it wrong, is that you are concerned someone else is doing more than you think you could ......

Great an activities co-ordinator can do all this for John - and so could you - if you were 'only' an activity co-ordinator and could dedicate your time to those needs alone. As we all know in different guises, being head-cook, bottle-washer, financial whizz, care co-ordinator, nurse, incontinence expert whatever ..... even in early stages is a tough call - to manage without sleep ... to attempt the physical demands of caring for someone with lost mobility ........ those that can cope with all that amidst the heartache and loneliness and frustration will surely go on to sainthood ........

PLEASE! Start being kind to yourself and stop feeling guilty!

Karen, x

 

[Skye]

Oh heck, did I give the impression that I resent other people helping him? I truly don't.

I'm delighted that John's getting better, and I'm delighted with the care he's receiving. But paradoxically, the better he gets, the more I think he should be home with me. While he was so ill, I knew I couldn't cope. Now????

I know, I'm crazy, totally mixed up, and rationally I know he's in the best place. But he's my darling John, and I want him back.

Yes, totally crazy!

 

[paris07]

Dear Skye,
I put mum in respite for a week yesterday and came home feeling very sad and guilty, I had to phone last night to see how she was and was allowed to speak to her ,she had been for a drive with a carer and was about to have a bath and her tea and sounded quite happy.(early days I guess)

I felt relieved that I had someone else helping me with mum . I then realized that I cannot do it on my own I need this time away from mum to get myself together.the first time I admitted this to myself.
Today, I am looking forward to some time for myself, hope that does not sound selfish,

From your posts I agree with everyone that you are a wonderful carer for John and will always be, John is very fortunate to have you there for him.

Best Wishes
Paris07

 

[Canadian Joanne]

Dear Hazel,

But paradoxically, the better he gets, the more I think he should be home with me. While he was so ill, I knew I couldn't cope. Now????

Of course you do. But there's lots of staff at the home and that's why he's improving. One person could not do all the care that a facility can. Now you can enjoy John. You needn't worry about all the practicalities.

I know another woman who kept her husband home too long. She now freely admits that once her husband went into care, he started gaining weight and his colour improved dramatically. Her health also improved considerably. Like you, it was very hard for her to let him go. But in an imperfect world, a facility can be the better choice.

I know, I'm crazy, totally mixed up, and rationally I know he's in the best place. But he's my darling John, and I want him back.

Emotions cannot be directed as we like. You're not crazy or totally mixed up, you simply want the man you love back. With the improvements you see, you've started second-guessing yourself. You have made the right decision as it's not possible, IMHO, to care for someone at home until their passing. Not unless there is unlimited money for nurses and aides. How many of us can claim that?

You've done so incredibly well. {{{HUGS}}}

Love,

 

[Margaret W]

Oh, Skye, this is just how I am with my mum. Since going into the Care Home, she is more relaxed, less confused, hates it of course, doesn't see why she should be there, but her life is so much easier. She isn't cooking or cleaning her own house (we have just sold it, the cleaning was clearly not being done, it was filthly, absolutely filthy (and I am not houseproud), we found food that was so out of date it walked out the back door on its own. I won't tell you about the vegetable box!

Our loved ones become more stable when in an organised environment. Remember how they were when they were not in that environment.

Love

Margaret

 

[Taffy]

Oh heck, did I give the impression that I resent other people helping him? I truly don't.

Dear Hazel,
I didn't get that impression at all. The impression I got was you had doubts if you had actually made the right decision in permanent placement considering now, the improvements you are seeing in John.
As Karen said;

and I'm sorry if I've got it wrong,

.
Hazel, I am glad that you have found what seems like a really good home and I know your pain of having to leave John there. Your not crazy at all, you just desperately want to make everything better for John and with this comes sadness of knowing that, it is not possible for you to do alone. I feel this sadness all the time. Caring Thoughts Taffy.

 

[Devonmaid]

Dear Hazel, oh my heart goes out to you, what mixed emmotions you are feeling. It mus give you comfort that John is responding well and that you seem to have found the right place for you both but I guess that this no compensation for having him with you is it ? Please try to find comfort that you did everything you could and now its over to the professionals , with your support and help of course ,
love Kate

 

[sue38]

Hi Hazel,

It seemed that it was getting more and more difficult to manage John at home even before the infection. Perhaps he seems as if he is doing well now in the NH, but that is as Karen's says because there are so many people there to look after him and all his needs (and these people are getting a good nights/days sleep). You could not possibly continue being super-woman on a permanent basis.

I know it was a difficult decision for you to place John in the NH but perhaps you can keep an open mind and see how things go. Does the NH placement have to be permanent? Could you in time bring John home for a few hours during the day to see how you manage?

The tears are natural. Just be careful you don't let them fall in that single malt.

Sending you hig hugs.

 

[Skye]

Thank you all for the replies. You're all quite right, John is doing so well because he has so many people looking after him, and I just couldn't do it on my own.

Sue, I've never been super-woman, I'm well aware of my own weaknesses, but feeling a complete failure is not pleasant. And feeling I'm letting down the man I owe so much is even worse.

I'm having a bad time just now, but I've seen signs of aggression reappearing, and that's something I know I can't cope with.

Yes, I can change my mind and bring him home, but I don't think it's likely to happen. I just have to come to terms with it.

Love to all,

 

[Cliff]

Dear Hazel,

I've only known you since June and in that time have realised what a caring, loving and devoted person you must be.

When I am doing all these things for Dee, I sometimes think about the future and only hope that I will be able to face it as you are now.

Can totally understand how you must be torn apart by everything at present, but you know you have made the right decision for John.

With love to you both,

 

[sue38]

Sue, I've never been super-woman, I'm well aware of my own weaknesses

Learning one is not super-woman and can't fix everything is a very difficult lesson, for me at least.

 

[Skye]

Learning one is not super-woman and can't fix everything is a very difficult lesson, for me at least.

Ah, but maybe your mum is not like mine was. No fear of ever thinking I could do anything right, let alone everything!

 

[Mameeskye]

Hazel

Ah, but maybe your mum is not like mine was. No fear of ever thinking I could do anything right, let alone everything!

I think our mothers must have gone to the same school of motherhood!!!!!

Hope that John has had another good day. It is good that he is coming on so well at the home. One thing you may have discussed with them, for when he is well, is bringing him home for lunch. I know that some of the couples in Mum's home do this. With anything it has to be carefully managed but it might even give you the best of both worlds..John at home and you able to sleep at night!!!

Good Luck. You are taking it so well indeed. I hate to think how I would feel.

Love

Mameeskye

 

[Skye]

One thing you may have discussed with them, for when he is well, is bringing him home for lunch. I know that some of the couples in Mum's home do this. With anything it has to be carefully managed but it might even give you the best of both worlds..John at home and you able to sleep at night!!!

I'd wondered about that, but I'm scared I wouldn't be able to get him back to the NH. I'll leave it till he's a bit more settled before I try.

I took Skye in to see him this afternoon, but some of the other residents mad more fuss of her than he did.

Love,

 

[Mameeskye]

I find that the residents love it when I take my little Jack Russell, Chi, to the home. She is always greeted before me by both residents and staff and is allowed to wander round the home by herself in an evening. She gets fed biscuits, hoovers the floor of all left overs that she can find and loves the tea trolley!

Sometimes she even sleeps on Mum's bed! She really loved the air mattress when Mum was ill in bed for months and did help soothe Mum by being there.

Mameeskye

 

[Libby]

Hi Hazel

I'm glad that John is doing well and hope that you are looking after yourself.

I think you're wise to let John settle a bit longer before bringing him home for lunch.

Can I just ask you about the colouring - is this just a normal childs book and crayons? I have wondered about buying some for my mum to see if I could get her to do something. I feel a bit awful asking for advice when you're going through such a rough time

Libs