Dealing with guilt

[doris]

Hi Everyone,
My LO has lewy body dementia and is up and down like a rollarcoster. He doesn't know sometimes where the toilet is but other days has a better recall of days than me.
He is going through a bad patch at the moment, he's lost time, day, year and thinks things are normal.
I haven't slept properly for a week and feel like putting him in a home as my patience is running out. I have never put him in respite as he made me promise he wouldn't be put in a home and keeps reminding me. How do you cope with the breaking of a promise if things get to that point?
Lewy Body patients don't lose their memory like AD but suffer with hallucinations which are very real and involve people they knew years ago (some dead) which is very trying when you have to join in the situation as reasoning and reality don't work.
The problem i find is that the bad days come and go without warning so if i planned respite he may be ok when he had to go and would be aware of everything. You can't explain that i need a rest as there is no reasoning and i can't cope with the guilt after making a promise.
Doris

 

[Brucie]

How do you cope with the breaking of a promise if things get to that point

The only thing we can console ourselves with is that we made our promises in good faith at the time. We can never foresee just how circumstances will change the situation.

As you say, the difficult thing is that conditions change and people can be worst when nothing is arranged, and seemingly fine when respite is arranged.

 

[Lila13]

I don't think you can "put" someone in a home without the person's consent anyway, the only thing you can do is alert doctors and social workers, then the responsibility is theirs, not yours.

Lila

 

[Rosalind]

Look, a week's respite care is NOT 'putting someone in a home' it is giving yourself a break to enable you to go on caring without cracking up.

I have recently been through this, when I had to go away and my husband, who has vascular dementia and is just not safe left looking after himself and the house needed to go into a care home for one week. He got terribly anxious about it, and then difficult, saying he absolutely would not go.

So I told him straight that if he wanted to continue to live at home he had to co-operate, as otherwise I would instigate divorce proceedings. That would mean the house he so wants to stay in would be sold, and while I would have to move to something smaller and less nice he would be taken into a care home by the authorities since it was the CPN who had decreed he was no longer able to get by at home with home care visits.

Brutal, yes. But that way he had a clear choice - go to a home for a week, and continue to live here, or face complete change.

He went - didn't like it, but survived, and then came home. Ask your CPN for help over this, and recharge your batteries so you can keep your word about not sending him away for ever.

Good luck

 

[suem]

Hi Doris

Although you certainly need a break and don't feel guilty about it, have you looked into medication to help the hallucinations?
My husband has LB with Parkinsons and I was at the end of my tether with all these imaginary people. I was up at night as there was soldiers in the bedroom, carol singers at the door, people trying to dig up the garden.,things would be thrown around the room..I could go on. In fact as awful as it sounds I just wanted him to die, it was so awful.
As he has Parkinsons it is difficult to treat the hallucinations but after a post on here I was advised about drugs that can help.
Our DR put him on sereoquel, it took a few months to get the dose right but it has changed our lives. The hallucinations are 90% better, what remains is managable and we have a life back.
It may not be the solution for you but anything is worth a try, then go and enjoy a well eaned break.
Sue

 

[janjan]

Doris. When my dad first went to a daycentre, he caused a right fuss, upseting mom and saying he wasn't going again and he hated it. Mom was desprate for a break. Iwent round to see dad and tried to make him understand that mom wasn't trying to put him away, she just needed a break for a few hours, and he would always come home, because there was no beds there for him to sleep in. At the time i think it was very frightning for him, and out of his usuall routine. But i do remember saying that we all have to do things we dont like doing sometimes, like i don't like going to work, but i have to. Anyway he didn't cause to much fuss the next time, and after he settled in mom got him into restpite there. Dad was never much of a socialiser, so i know he did find it difficult at first. You need time for a break when you are caring for someone else as well as looking after yourslef. I wish you the best of luck. Janet