Partner in care home - finding this hard

[Fauxwidow]

I originally posted this in relationships and had some very helpful and supportive responses. However, I would really like to hear from anyone in this situation and I guess there may be people on this board with partners living with early onset dementia.

(Just to say I do of course appreciate how hard it is for anyone with a relative in a care setting - whether that your parents, or you are having to manage this when you and your partner are somewhat older. I don’t mean to minimize those challenges in any way)

“Wondering if anyone else is in this situation.
Am mid fifties with my partner of 30 years living in a nursing home with brain damage.
Very little of his personality left, limited speech, no interest in anything. Sleeps or stares into space most of the time. Might sometimes be able to engage him in a TV programme, but not often.
I have two adult DC in mid 20s, fortunately living away from the area so they are able to
live their lives as they should at that age, just coming to visit their dad from time to time. It has been and is still really tough for them, but I’m glad they are able to have a normal life for their age when they aren’t home.
Whereas I now live alone, am neither a partner nor “widowed”. Every day I need to decide whether to visit him. I do only when I feel I can, but then I feel guilty. I am grieving him but yet he’s still there.
He may well live for years in this state”

Hugs, is there any support groups or councilling you could access?

I don't think you should feel guilty about not visiting every day.
You need to look after yourself I'm assuming you are still working and visiting every day is probably too much stress.

Sorry for what has happened to your DH. I absolutely agree that your adult DC should embrace their own lives to the full.

Take a week off. Inform the staff. Learn how to live a life that makes you happy. Introduce visits when you are feeling mentally stronger. You can’t keep giving everything of yourself over.

Maybe some therapy will help.

I know a couple of people who have lived with this. In both cases they started to build a life to see them through the next 30 years whilst still loving and supporting the person who didn't recognise them any longer. Both had flings although neither had a permanent relationship.

With dementia people tend to have no sense of time so they know that nice people who aren't staff visit them and they like that. But they don't know if you only visit once a week or less or only stay 15 minutes

I'm so sorry OP, what a desperately sad situation. You may have read it already, but there's a book by Nula Suchet called The Longest Farewell, about her experience of her husband going into a care home with early onset dementia, and how she met John Suchet there, who was caring for his own wife in the same situation. They fell in love and eventually married years later, after their respective spouses had died. I haven't read it myself, but I listened to a podcast about it, and it sounded very good.

Hi OP I’m so sorry you find yourself in this situation. I’m in a very similar situation. I’m 46 and my husband is 54. We have an 11 year old daughter. My husband moved into a care home a few weeks ago. He has young onset dementia. I miss him terribly and don’t really know what to do with myself. I don’t really have any advice as I’m just starting this next phase but wanted to let you know that you’re not alone. Feel free to PM me if you’d like to.

My DM was in a care home and on another floor was a much younger chap with the most piercing blue eyes. We nodded and said hi to him when we visited floor-to-floor in her chair. Then after a year the care home was forced closed and everyone had three weeks to leave. DM and the chap although about 30 years in difference, went to a new place together. Left on the same day, same minibus etc, rooms adjacent. In then next four or so years we got to know them better, although we eventually moved DM to a more affordable home. His lovely wife, mid 50s, went through a lot of adjustment and we would still meet up outwith the care home for dog walks and coffee. He was in care from 57- 62. It was very tough for them all. The lovely wife who had known him since she was 16 and travelled the world with him via his job, started to make new friendships and associations. She went out with some of the other relatives, too, socially. I bumped into her for the first time in ages and her sparkle had returned. We had a hug. I'm not quite sure the point of my post but possibly to say you will make unexpected friendships along the way, that might help get you through some of the dark moments.

Allnightlong2016, I am so sorry to hear you are in this situation too.

But worse as you are younger than me, and your daughter is so young too.
That has made me appreciate that we did have more time together as a family.

I will PM you tomorrow

Every day is way too much - once a week is probably about right, so that you can oversee his care. But you need to be getting your own life back, getting out and about, holidays, friends etc.

I don’t think anyone can say what is right for another person about how often they go to see their person. I go to see my husband everyday as that what we need at the moment. The time will come for creating a new life because getting your own life back isn’t possible. Your life you had before isn’t going to exist again. It takes time to come to terms with that. It is form of grief, anticipatory grief and learning to live with that isn’t easy as getting your own life back.