Very Bad Day

[tedsmum]

Hi Everyone

I only joined yesterday and today my dad was taken into an assessment centre as he has Lewy Bodies Dementia. He could not believe that I had taken him there after many months decline and lots of consultation with his mental health nurse. Everyone else there seeemed much further down the road than he is but he was wandering at three in the morning seeing imaginary people and generally becoming more and more upset and agitated. I feel so guilty and hope I've done the right thing, ended up in floods of tears when talking to his consultant. Everyone is telling me I've done the right thing but I don't know what the future holds for him. He is such a private man and I had to leave him in a communal lounge full of strangers.
Has anyone else lived through this I would love to have some advice.

Christine

 

[Áine]

Hi Christine

Been through similar. My dad also been diagnosed with Lewy Body. He deteriorated towards end of last year and early this year, to a point where he was going out half dressed on very very cold days, leaving the door open for imaginary people, totally confused and unsafe living on his own. At that point it hadn't even seen the psychiatrist to be diagnosed with anything, but it came to a point where everything came unstuck and it was arranged he go into a council run repite home, for emergency respite care. I thought I'd be so relieved when that happened, but I was utterly heart broken. The whole process of labelling and packing his clothes and taking him out the house into my car is something that will stay with me the rest of my life. He's also very private, very deaf and I'm pretty shy .......... so when we were ushered into big, loud lounge with everyone staring at new arrivals it felt like hell on earth. I was terrified and very tearful leaving him there.

I think it was the shock and exhaustion and relief and unknowness of it all that affected me. Once he'd been there a few days and I started to recognise staff and feel more familiar with the place, it felt OK. I started to enjoy the quality time I could spend with dad rather than struggling with all the practical things and the anxiety about what he was up to when I wasn't there. The staff were great and welcoming and supportive. OK, it's not the ideal situation for anyone to be in ... but once things settle maybe it won't seem as painful as it is just now.

Áine

 

[Libby]

Hi Christine

I thinks it's an awful thing for any child to have to do, no matter how old you are! I hated leaving my mum, but deep down, I knew it was the best thing for her, as we couldn't be there all the time for her, and she wasn't safe on her own. Just think how you would feel if you left your Dad at home on his own and some harm came to him.

I've had days when I've felt really down about the whole thing, but joing TP has helped me - unfortunately, there's so many other people in the same situation. Just today the home have been on the phone to my brother to say that they've had to move mum to the ema section as she had said she was going home and was getting abusive because they wouldn't let her. Once she had calmed down they moved her back to her room, but it's all really upsetting.

Take care

Libs

 

[Kayla]

Dear Christine,
Yes, I have been through a similar experience with my Mum. She was happily settled in a very nice family run care home, when she fell and broke her hip. The hospital experience totally confused her and she was desperately unhappy. The care home took her back, thinking that she would improve once she was back in her old routine, but they were unable to cope. She kept sliding down out of her chair and couldn't feed herself or take a drink from a beaker. She rambled on about her home in North London as a girl and got upset when she remembered her brothers had died.
We had to move her to a nursing home with EMI as she was so confused. Physically, she rapidly improved in the NH because they knew which foods were easy to eat and they kept a check on her medication. She kept trying to escape and fell several times because she couldn't walk properly. Mum's condition was really unstable for months, but (touch wood!) now she does seem to have settled down. Mum still has hallucinations, but they don't seem to worry her so much.
She says that my Dad dives under the bed when the nurse comes in and she often says there is a cat or dog in the room.
The problem seems to be getting the cocktail of drugs just right, especially when patients have other medical conditions. I was beginning to think Mum would never settle down, but she has and I've been touched by how kind and thoughtful the staff can be, once they get to know new residents. They know me too and we often stop to chat. In a good home, the staff should be trained in how to handle dementia patients in the best possible way.
I hope all goes well for you all.
Kayla

 

[tedsmum]

Hello Again

Thank you so much for your replies I have decided to have an early night get strong and go there tomorrow and take whatever the day brings. It means so much to me that people out there know exactly what I'm going through and take the time to reply. Thank you again and I'll be back on the site again for sure.

Christine

 

[dmc]

hi cawells
welcome to tp,
i have just left my mum in the very same situation as youve described, it is so hard to leave them, with strangers, she looked so lost and scared and yet she's not stable enough to come home, it is heartbreaking, this place is new to my mum at the moment she only got moved on tuesday, but in the last hospital she was in she did seem to get used to it.
i cant say it gets easier with time but you do get used to it and you have to think that its best for your dad, my thoughts are with you, sending you a {{{Hug}}}

 

[Claire]

I know how you are feeling. I'll never forget taking my Mum to her care home, knowing she was never going to go home again. I knew it was the right thing to do, as I couldn't give her the 24 hour care she needed, but it still made me feel that I'd let her down. She did soon settle, however, so it was obviously the right time to do it, and she is so well cared for and comfortable there that I am totally happy with it. All the stresses of caring at home disappeared immediately, and when I visit she is delighted to see me, even if she can't remember my name. When I leave I know that she is safe, and that she is in the hands of people who give her loving care. I wish I could have kept her at home, but I know that I wouldn't be able to cope with her as she is now, and what she has is excellent. Don't beat yourself up about it.

Take care

Claire

 

[Lila13]

We had to leave my mother in a hospital which she obviously hated, we all told her it would only be temporary and we'd find somewhere more suitable as soon as we could, but it was the last straw.

Lila