• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

What way to turn


Registered User
Jul 1, 2005
My husband is currently on respite with a view to full time care. The last few months have been horrendous for me to cope with as he has Parkinson's with Lewy body dementia and has been a nightmare to deal with. Mainly as he has hallucinations centred around me that have made my life a misery.I have not had a rest while he has been away as I've had so many things to sort out regarding continuing care which has been difficult as my social worker is sick and no one else is familiar with the case. He has settled a lot better than I thought he would but has been very delusional, the home had to ring me today as he thought I'd been kidnapped and talking with him made very little sense.
I suspect like many others I feel very guilty about him going into care as it is not an easy decision to make. It is a lot harder as when I look around at other residents they are a lot further advanced than him and I wonder if it's the right place for him. I know how much he misses home, our pets and his freedom and I find it very strange without him.
I have thought of many scenarios to try and make a better solution. As the possibility of full time care loomed I have decided to go back to work as I would be unable to support myself. I have considered having him back at home with a full time carer while I'm at work. I don't know if anyone has experience of doing this and pitfalls if any. My concern is what he will be like at night as the hallucinations start then and I won't want to get up if I have to go to work. Am i better to live with the guilt and the feeling he is not quite ready for full time care as that is the best option at the moment or should I be looking at something else. I have spent the last few weeks in turmoil, agonising what to do for the best. I know there is no magic solution but ideas and help are very welcome as I'm just about at my wits end knowing what to do.


Registered User
Feb 17, 2006
It a hard decision to make , and wondering where your going with your life to support yourself , I know when I went back to work social services would not pay for full time care for my mother while I went back to work . I did try part time , but could not support myself on that income .

I hope that your SW gets back to work soon so she can put your mind at rest about continuing care, is continuing care to do with when someone go in to care home ?

PS I am at home full time caring for my mother and part of me wants so much to go back to work full time as I would be so much better financially , for me its like putting my life on hold

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Registered User
Feb 14, 2007
Hi Suem,

I'm still new to all this and therefore no expert as my dad is still very much in the early stages of Alzheimer’s especially judging by other people’s experiences. I think it’s important to do nothing in haste.

I really do think that if ones loved one was 100% they would say, I want what is best for you not best for me.

There has to come a stage when you have to consider yourself and realise that perhaps the person you care for is better off in a place with full time care, as long as you have vetted the place and continue to have significant input into their well being.

Step back for a while and see how things go would be my advice. May I make a suggestion read ALL your own posts, I think that will put things into perspective about just how hard things have been for you.

With sincere hope that these thoughts help.


Registered User
Aug 29, 2006
SW Scotland
suem said:
I suspect like many others I feel very guilty about him going into care as it is not an easy decision to make. It is a lot harder as when I look around at other residents they are a lot further advanced than him and I wonder if it's the right place for him. I know how much he misses home, our pets and his freedom and I find it very strange without him.
Dear suem

It's that old guilt monster again, isn't it? But you shouldn't feel guilty. You've had such a tough time caring for your husband, and he's now at the stage where he needs 24 hour care. You just can't do it, love.

It's hard enough caring for someone during the day, but your husband is having hallucinations at night, you're not getting any sleep, and you can't go on like that.

Getting carers in so that you an get a job just wouldn't work either. You'd be worried sick about him during the day, and still not get any sleep.

You say he's settled well in the NH, and that will get better as he gets more accustomed to it. And he's safe there, and well cared for.

Give yourself a break, love. Have a rest for a while, then if you want to, find yourself a job. Get your life, your confidence and self-esteem back, and enjoy your visits to your husband without having to worry about the day-to day stuff.

Easier said than done, I know. I'm not at that stage yet, but when I reach it I hope I'll come back and read this post!

Take care,


Grannie G

Volunteer Moderator
Apr 3, 2006
Hi suem,

I feel so sorry for the position you find yourself in and know it will be the same for me in time.

Whatever decision you make, if your husband needs so much care, you will not be able to work and care for him, even with help, as his condition deteriorates even further.

My husband had his first hallucination, not induced by drugs, this weekend. He thought we had squatters. He could see them in the bedroom, sitting on the floor, sitting on the bed and sitting on the chair. He was terrified and I didn`t know how to help him.
If that became a regular occurence, I don`t know how I`d cope.

Will it be better for you to have to live with the guilt than it will be to become ill through the stress and strain of caring for him at home.

There is no easy answer. I know you`re not looking for one. You just have to weigh up the pros and cons and try to reach a compromise.

Take care of yourself too. You are under a lot of stress and have been for a long time. It takes it`s toll.

Love Sylvia x


Registered User
Jan 27, 2006
Hi Suem. Mom felt like you when dad had been in his n/home after a few weeks. I remember her saying to me, do you think i might be able to cope if dad came back home. Dad has the same as your hubby LB with slight parkinsons.
How gutted i felt saying mom you wont be able to cope, things will get worse.
I remember laying awake at night worring if dad might wake in the night and fall down the staires. Stair gate wasn't an option because mom as week hands and wouldn't have been able to open it.
In the n/home he has no stairs to climb hes on the ground floor. I know she desparately misses him, but at least hes safe and shes not so worn out .
Thinking of you and knowing how hard things are when your mind is in such turmmol. Best wishes . Janet


Registered User
Jul 1, 2005
I am now making some sense...

Norforklass..that was good advice about reading past posts and seeing how bad things were. Through TP I have become good friends with Rosalind, both of us in very similar situations. Over the last two years she and I have exchanged some desperate emails where we have poured out our feelings to each other. She too has told me look at those emails I sent when things were not as bad as they are now. When you do things become clearer and you know they can only get worse.

Skye Yes you are right it would be difficult to work wondering what was going on at home.

GrannieG I have him at home tonight as we have a psychiatrist appointment tomorrow. The hallucinations are driving me mad after just a few hours. We have umpteen people in the room doing god's know's what. Water running down the walls.People digging the garden. How could I work and come home to this?

Yes the guilt thing is a big thing and it feels I'm throwing away a 32 year old relationship but it will only get worse..and yes I need a life.


Registered User
Mar 7, 2004
Hi Suem, can imagine how you feel, but look at things logically.

You need backup care 24/7, and still where is your life in all this.

I would say, do nothing in haste. Accept care home help, for there you have the 24/7 coverage you need. You will then be able to spend some time visiting, as much or as little as you determine, but physically and mentally you will be in a stronger condition to cope.

Do pray that things work out for you, love


Registered User
Aug 29, 2006
SW Scotland
suem said:
..... it feels I'm throwing away a 32 year old relationship but it will only get worse..and yes I need a life.
Suem, love, you're not throwing away a 32 year relationship. The relationship you have now is not the the one it was, and the man you loved all those years is not the same as the man you care for now. Yes you still love him, and want to care for him, but you now need some help.

If someone else takes over the hard bits, you can get back to the feelings you once had.

Kick the guilt monster into touch.



Registered User
May 14, 2006
Dear Suem,
I think hallucinations are very hard to deal with and rather frightening too. When my Mum thought she had little dark men in her lounge watching the television and we had to go and sort them out, there was this awful feeling at the back of my mind, "What if there really are men in the house?" I found her house, which had always seemed so homely before, suddenly became a bit spooky.
When Mum went into a care home, through her own choice, I really felt as if a huge burden had been lifted from me and she actually seemed so much happier in herself. Her drug regime was supervised and she had a routine, so she stopped getting up in the early hours of the morning.
She is now in a nursing home, after a fall and she hasn't had any distressing hallucinations for some time, because there is always somebody around to reassure her. I think she probably still sees things that aren't there, but it doesn't bother her so much.
I've found that I've been able to spend time just talking to her rather than rushing about sorting out muddles and trying to make sure she has taken the right pills at the right time. The medication used to be such a nightmare and I never worked out a way to make sure she took the correct dose of everything, even with an automatic pill dispenser. I used to ring her several times a day, but often couldn't get much sense from her.
My Mum's main problem has been her rheumatoid arthritis, which has stopped her walking again after the hip replacement, but the fact that the nurses monitor her response to the steroid drugs she needs, has helped her a lot and her condition is now more stable.
I hope you feeel able to decide on what's best for your husband and for yourself. Sometimes a person's medical needs are just too great for one carer to deal with on their own and professional help is required.