Before I was stressed out - now I’m stressed out AND feeling guilty!!

[Clonk59]

Firstly apologies if this is in the wrong place - I don’t seem, try as I might, to be able to work out how to post properly on here. I’m usually fairly tech savvy but for some reason .......?
Anyway that is the main reason I’m not contributing more often!
As mentioned on my first post - my mother died suddenly at end of July and my father was diagnosed with mixed dementia 6 days later. He’s 86 - I’m 59.
In the ensuing weeks whilst sorting out the funeral etc my father had careers coming into his home 3 times a day with some sort of success. A bit up and down and many phone calls a day to me when I wasn’t there - I’m close by and was seeing him every day. At the end of September I had a holiday booked which I decided I needed and with the help of a local dementia support worker found a lovely though expensive place for my father to go for 3 weeks respite. Whilst I was away various relations and friends visited my father, commenting that he never once mentioned home and seemed carefree and much less stressed than he had been. I spoke to the care home and extended his stay for a further 4 weeks and on my return from holiday each time I visit he constantly moans about every single thing and has now started saying stuff like - you’ve got to get me out of here - and it’s a madhouse - and so on. When I ask him how he thinks he would cope at home now he says he couldn’t. So now the situation is he doesn’t want to be there but also appears not to want to go home. The staff, who are all brilliant, say it’s early days and will take much more than just a few weeks to settle down. Of course I agree. But now I feel GUILTY that I’ve almost imprisoned him!! Sorry this is so long - please has anyone got any thoughts on this which may make it easier for me to handle this. This monumental decision I’m making is doing me in!!!’

 

[Slugsta]

Hi Clonk,

I'm glad you were eventually able to post your concerns!

It is common for the PWD (Person With Dementia) to take time to settle. In the grand scheme of things, it sounds as if your dad is actually doing comparatively well - although I know that is no help to you!

Please try to ignore the GM (Guilt Monster). We are all very familiar with the poison it drips into our minds and I hereby officially endow you with the Sharp Stick which should be poked into the eye of any GM that torments you (((hugs))).

I suggest you try to limit talk of 'home' even to point out that dad couldn't cope there. Tell him he has to stay where he is until some mythical point in the future ('When the Dr says you are better' 'when we have the decorating done' or even just 'not yet') ,rather than forever, and then distract 'Oooh, look at the squirrel on the tree' 'Whatever is Mrs Smith doing?!' 'Shall we have a biscuit?'.

How it is when you leave the CH (Care Home)? There are strategies for getting away with minimal distress if dad wants to go with you.

 

[karaokePete]

Hello @Clonk59, I know guilt is a common feeling in this situation but try not to feel too bad as you know you are doing what’s best for your father. It always helps to talk to others, like the staff, to see how settled a person is as you may get a different view from the person themselves. There is a Society Factsheet that contains some hints on how to deal with emotions when moving a loved one into a Home. You can read it by clicking this link https://www.alzheimers.org.uk/media/1016

If you click this next link it will take you to the ‘help’ section of the forum and, amongst other things, you will find some illustrations to aid use of the forum. I hope that will be of use to you as it’s important to keep posting for the support of members when having a rough time.
https://forum.alzheimers.org.uk/help/

 

[canary]

Have you asked the staff whether your dad asks about leaving at other times when you are not there?

It is a sad, but common theme that seeing family will trigger off the "want to go" loop, so he probably isnt feeling imprisoned at other times. Slugsta has given good advice about how to answer him.

 

[MothersCarer]

We are just at the point of my mother going into a home permanently and I feel for you as the guilt weighs very heavily at times. I do remember, when my mother says she wants to go home (she is in a short term home for assessment at the moment) that when she says this "home" is not the place she remembers. It would not be safe and she could not cope. She does not recognise this but I know we have to for her sake.

I hope all goes well for you and your Dad settles. If he finds it difficult hang on to the thought that it is the best place for him at the moment and that this is the best you can do.

 

[Norfolk Cherry]

@Clonk59 you are not alone. My mum moved into a dementia care home three weeks ago. She is very unsettled, "it's like a prison, they don't let you out" About the other residents, "They don't make much sense when you talk to them" She looks tortured and isn't eating much. She says she is living in a nightmare. She can't remember I've been, and doesn't believe I will come back. I just try to remember her saying similar things about feeling in prison in her own home. I feel exhausted by the emotions of supporting her, dealing with the paper work, clearing her house out and grieving for her and my dad as I can no longer maintain the illusion that things are Ok. I feel like I've been struggling to keep her head above water for 9 years, but now I've dropped her and I have to watch her slowly drown. I cry a lot. We are lucky to have found the most wonderful carers, in every other way, I just wish she had died in her sleep before she had to suffer like this. As others have said, it's early days, let's hope our parents settle and reach a calmer state of mind.

 

[Singing Friend]

Oh yes, the guilt ...! My mum was just the same when I arranged for her to go into a home last year. It took a couple of months before she even began to be settled, but then she did seem to begin to feel more at home. She's fairly OK now most of the time.

When we visit we mostly aim to leave when she is going into a meal, which means that she has something else to think about, and people around. That seems to help her not to focus on the fact that we're leaving and she's not.

When I visit I do take her out for rides around the area, and occasional visits to tea shops, but again aim to get her back in time for a meal so she doesn't have the chance to dwell on the fact that she's just been left.

I still feel guilty that she's there, but on the other hand I know she's being well looked after, and on the whole seems settled and happy, and probably has more company than she'd ever have had at home.

 

[Clonk59]

Firstly apologies if this is in the wrong place - I don’t seem, try as I might, to be able to work out how to post properly on here. I’m usually fairly tech savvy but for some reason .......?
Anyway that is the main reason I’m not contributing more often!
As mentioned on my first post - my mother died suddenly at end of July and my father was diagnosed with mixed dementia 6 days later. He’s 86 - I’m 59.
In the ensuing weeks whilst sorting out the funeral etc my father had careers coming into his home 3 times a day with some sort of success. A bit up and down and many phone calls a day to me when I wasn’t there - I’m close by and was seeing him every day. At the end of September I had a holiday booked which I decided I needed and with the help of a local dementia support worker found a lovely though expensive place for my father to go for 3 weeks respite. Whilst I was away various relations and friends visited my father, commenting that he never once mentioned home and seemed carefree and much less stressed than he had been. I spoke to the care home and extended his stay for a further 4 weeks and on my return from holiday each time I visit he constantly moans about every single thing and has now started saying stuff like - you’ve got to get me out of here - and it’s a madhouse - and so on. When I ask him how he thinks he would cope at home now he says he couldn’t. So now the situation is he doesn’t want to be there but also appears not to want to go home. The staff, who are all brilliant, say it’s early days and will take much more than just a few weeks to settle down. Of course I agree. But now I feel GUILTY that I’ve almost imprisoned him!! Sorry this is so long - please has anyone got any thoughts on this which may make it easier for me to handle this. This monumental decision I’m making is doing me in!!!’

Thanking you so much for your support - it really does help

 

[Helly68]

Occasionally my Mum - in a CH successfully now for two years - will say she wants to go home. I realise we are lucky in that this doesn't often happen. When it does, I think she isn't even talking about the home she shared with my Dad, but possibly her childhood home, or some idea of comfort when she feels vulnerable. I say this because the way dementia works, even when the PWD states something pretty categorically, it is hard to know what they really mean. I think the sad realisation is that for most if not all in CH, that setting is probably the only safe and practical solution - certainly that was the case for us, though obviously everyone makes their own decisions.
My mum also enjoys having something to moan about. Whilst I listen to her complaints, it is interesting, as another poster notes, to chat to staff about how he seems when you aren't there is in my view very useful.
What has been the hardest for me is the responsibility - knowing you are making decisions for someone else and trying to do the best you can - it is incredibly hard.