I don't know how to cope with this

[Madge99]

My Dad is 90, he's been in a CH for about 3 years. In January he had 2 falls in 24 hours and was taken to hospital. He was deemed fit for discharge but the CH wouldn't take him back as he would have been at too much risk, and said he would have to go to a nursing home. While trying to find him a place, he developed pneumonia (he had had a chest infection just before going into hospital). He stopped swallowing for a few days, they tried to put a tube down his throat to feed him, but he kept pulling it out. They said he could pass at any time. He got better, he went to the nursing home two weeks ago.
The home is lovely. The staff seem to be great, but my Dad is... just not my Dad.
He can't do anything for himself, can't talk, he's just lying in bed. He has had macular degeneration for years and it's certain he can't see anything. He is also very deaf. They've said he is not on end of life care as he is still swallowing a little, but they said I shouldn't expect him to last very long.
There's part of me wants to go over and spend every minute with him, but when I get there it's all I can do not to cry. My husband is of the opinion that I shouldn't go and see him very often, as I always get upset. (I don't mean he's stopping me going, but he doesn't think it does me any good) The trouble is, I haven't seen him for 10 days now and I'm crying a lot as I want to see him, but I want to see my old Dad, not this body in the bed.
I know people on here will understand if I say I wish he would go and then I could mourn him properly.
I'm trying to console myself by thinking that most likely he has gone past the point of suffering (mentally) and is unaware of what state he is in.
Three weeks ago I was diagnosed with diabetes so now I've got well meaning friends saying I should look after my own health first.
But I want to look after my Dad, and there's nothing I can do to make things better for him.

 

[lemonjuice]

You have hit the nail on the head with your comment
But I want to look after my Dad, and there's nothing I can do to make things better for him.
He is no longer the dad you grew up with.
That Dad has already died. (And yes I understand that wish they would die and you could grieve and then get on with your life.)

He is being cared for and really there isn't a lot you can do for him anymore. It's coming to terms with that fact, which may take a while, that you need to do.

I've had 3 years of emergencies with my mother and for my own sanity visit very infrequently now. She no longer reacts to my presence. The carers do occasionally get a short reaction and are more like 'family' than I am now.

Yes it will be the hardest thing you ever do 'to let go' of that Dad, for whom you will mourn probably many times until that final grief.

 

[Jinx]

I think there must be a compromise position here. That person is still your Dad and whilst it seems he is past knowing what is happening it is still possible he would derive comfort from you holding his hand. If you want to see him then go, once he's gone you won't have that chance and there's nothing worse than living with 'if only's'. Do what feels right for you. x


Sent from my iPad using Talking Point

 

[Shedrech]

oh Madge99, what a heart rending post
I appreciate what your husband is saying; I guess with your own health concerns and such tough feelings to deal with, he's trying to shelter you and look after you
you're not feeling any good, though, are you
I just wonder whether it may be worth popping in to the nursing home to at least talk with the staff so you have their reassurance
and then if you feel up to a short visit with your dad, go in to sit with him for a short while
I find I'm generally better once I've just faced something; at least I then know the situation for myself and am not imagining it to be worse than it is - though I admit some things I absent myself from as I can't change them, so I'm a bit of a hypocrite
sadly, we can't make things better for our dads, and we can't have our old dads back - maybe you do need to hold his hand again to offer him a little comfort and give yourself some peace of mind - if it's too much for you to then go back again, you'll know you have been with him for a while
not much help, am I
best wishes

 

[Madge99]

Thanks so much for all your responses. I think it did me good just to get that off my chest to people who know what I'm going through. I did have a good night's sleep and I'm not feeling so down today.
I will go and see him next week, and like you've said, just hold his hand and talk to him for a bit because I know I need to see him.
Thanks all x

 

[artygirl]

I am so hearing you right now. My Mum, who is 89 at the end of the month is now in end stage vascular dementia. Three weeks ago we would still get the odd smile and she would grab for my hand but yesterday I went in to see her and she doesn't focus on my face, makes odd grabbing motions with her hand (that is covered with a sock as she scratches and pinches herself and the carers and she cannot use her left side at all) and generally doesn't appear to know me anymore. I fed her her meal but I started crying as I am really really struggling with this. She hasn't spoken for months, is completely bedridden and incontinent, no longer appears to know what's going on around her and doesn't recognise any family members. It's hard because I know she would absolutely HATE being this way. I have a couple of auto immune conditions - both of which include the wonderful main symptom of fatigue and I'm worried my stress will impact badly on my symptoms. Thanks for listening

 

[TinaT]

Madge try to take a friend with you for support. At least you can chat together and you never know, he may be listening to you both.

Also take some lovely smelling body lotion and gently massage his arms and legs. The power of touch can give great comfort to him and I'm sure it will do you as much good as he is getting from the touching therapy.

Although visiting can be distressing, the alternative of not visiting can be even more distressing and can lead to guilt feelings which are very hard to cope with,

I used to sing to my husband and I'm sure he liked it. I also read bits from the newspaper to him and tried to chat even though he could not respond.

We may never know if we are helping them in some way but at least we haven't given up trying,

Best wishes TinaT

 

[Madge99]

I did go and spend some time with Dad last week. He gripped my hand and I like to think he knew it was me, not just an automatic response. He turned his head as if looking round the room, but apart from that he didn't move at all.
Tina T, for some time I've always made sure I'm wearing the same perfume (did I read somewhere that sense of smell is the last to go?) so maybe it will be familiar to him.
Today we are going to stay with my mother in law for a few days, 200 miles away. I'm going to be jumping every time my phone rings

 

[Spamar]

Madge, as far as I know, the sense of hearing is the last to go.

 

[Madge99]

I just googled it and you are right, but my Dad has been very deaf for years. He also has macular degeneration so he can't see either

 

[Spamar]

In that case, you're probably right about smell!

 

[Raggedrobin]

That is one of the most touching things I have read on here - that you wear the same perfume in the hope he recognises you. What a lovely thing to do.
As others have said, you just have to do what feels right. I have found the toll of visiting my mother has got worse and I visit her less often now. I have had so many times she has seemed close to the end that now. My Dad also had macular degeneration and dementia, it is a difficult combination and of course understand your desire for all this to end for him mixed with the sense of grief that he is moving towards the end.

 

[lemonjuice]

Tina T, for some time I've always made sure I'm wearing the same perfume (did I read somewhere that sense of smell is the last to go?) so maybe it will be familiar to him.
(

That is one of the most touching things I have read on here - that you wear the same perfume in the hope he recognises you. What a lovely thing to do.

I must admit that, as my mother no longer appears to respond to even a hand squeeze, I tend to wear the same perfume I wore before I was married in the hope that something inside makes her realise who is visiting. We have a couple of those scented room atomisers and cinnamon sticks/pot pourri in her room. (Makes an easy birthday/ Christmas present idea too.) Plus I have a 4711 (first ever perfume she had) scented stick to rub on her forehead when I visit.

I thought hearing was the very last sense to go, though scent obviously lasts quite a while. Hence my visits consist of rubbing her forehead (scent and hopefully can smell mine as I do so), stroking her cheek and holding her hand(s) (touch) and sometimes I sing to her or we listen to a music CD together (hearing).

If she can still physically 'see' any more I doubt her brain can make sense of the signals and the same with language.

This 'last stage' is really so distressing to watch them 'just existing'. Remember you are not alone.

 

[Madge99]

I woke up this morning I had been dreaming I was sitting in a lounge in a care home with my Mum (who died 2 years ago) and my Dad. There was another man there who was a stranger to me, but I was telling him a story about something which had happened in the family (oddly it happened after my Mum died, even though I could see her) and when I'd finished my Dad came and sat next to me, gave me a cuddle and rested his face against mine. I felt so comforted when I woke up.
But now I feel rather sad...

 

[Raggedrobin]

I remember Paul Gallico describing that feeling in a book called 'Jenny', of waking up from a dream, only to remember that a loved one is gone. How lovely that he comforted you in your dream, though.