Feeling really guilty

[carastro]

I guess I just need a bit of moral support here.

Mum has vascular dementia and was unsafe to be left on her own any more:
Getting lost (in her own home and wandering out into the communal area of her flats looking for the breakfast room - not a warden assisted place).
Found a plastic plate melted in a mini cooker (she obviously thought it was a microwave.
Could not cope with new digital TV
Not eating properly
Balance problem and often fell
Did not recognise her own flat and getting frequent phone calls, "How do I get home"
Messing up her medications
etc etc

Managed to get her into a Care Home, though she didn't want to go.
Now having to clear her flat.

My problem is mum often asks to "come home", says she is not staying in the Care Home
Doesn't want us to get rid of her things (but we have no choice), we are trying to hold on to as much as possible and divide things amongst members of the family, or sell things.

She has some periods of reasonable lucidness, but often completely confused, so it's really difficult.

Just would like to know if it is normal to feel so guilty about putting her in a Home and getting rid of her things knowing she doesn't like it. Also is it best to tell white lies rather than be truthful.

Carastro
Managed

 

[Grannie G]

I remember clearing my mother`s home when she went into residential care. It was soul destroying. I kept looking over my shoulder expecting her to walk in.

But like you, I found things which made me realise more than ever, although she thought she could look after herself, it was obvious she couldn`t.

It`s a dreadful task to clear someone`s home when they are still living but absolutely nothing to feel guilty about.

 

[dingly]

Yes C, I think 'guilt' is perfectly normal given the situation - you shouldn't feel guilty cos you've done the right thing for her and it's been done out of love. But every drawer you empty, everything you give away reminds you of what they were. And then your faced with what they are. And then you feel guilty cos they've got nothing left,all their bits and peices gone, even the person they were - gone. At least that's how I felt.
Don't beat yourself up and I hope this passes. Once the house is cleared and things settle a bit you might feel better. Hope so!
I can remember feeling' guilty'- about feeling relieved- that mum was safe in CH and I no longer woke up in the night worrying she'd wandered off. I felt so selfish - Crazy! but a very real feeling at that time. Dx

 

[Goingitalone]

Oh Carastro,

reading your post made me realise how lucky we are that, although Mum is in a home, we do still have her house because my ill brother lives there.

How I feel for you, having to share out her things. There is so little room in a care home for all those items gathered over a lifetime.

When your Mum settles and you are able to visit it should get easier. I think it's harder for us to adjust in many ways because we are still in the here and now and realise the full implications of what's happening.

I hope that your Mum settles well, as mine has, and that you will enjoy visiting and chatting about the old days, and that you will see her smile often.

God bless,

Maggie

 

[eastiesgir]

I think feeling guilty is very very normal. I felt enormous guilt when we had to clear mums flat out when she went into the care home.
I found it easier if I just sat down and reminded myself why I had to put mum into the care home. Sometimes it worked to ease my feelings of guilt

 

[Witzend]

We felt exactly the same - clearing our mother's house was horrible. She too was constantly wanting to go home, though it wasn't long before she forgot where 'home' was, and now often evidently means her parents' house which she left before WW2.

As for getting rid of things, unless any of the relatives has a huge house it's simply not possible to hold on to much. But we did somehow feel we were throwing her life away, although not too much went to the tip in the end - good old Freecycle accounted for a lot of it.

One thing I kept - couldn't bear to get rid - was a very old wooden spoon, so well-used it's completely worn down on one side. Have to keep telling OH and visiting kids NOT to put it in the dishwasher, it's b*ggered enough already. Sentimental or wot? And elder daughter wanted a couple of granny's old dinner plates, in memory of all those multi-helpings of granny's lovely roasts.

It's very hard, but what you have to try to remember among all the guilt and horribleness is that you've done the very best you could for your mum, and her former self would know that and thank you.

 

[Dazmum]

I can remember feeling' guilty'- about feeling relieved- that mum was safe in CH and I no longer woke up in the night worrying she'd wandered off. I felt so selfish - Crazy! but a very real feeling at that time. Dx

Me too Dingly, sometimes I hear my son get up in the night and feel relieved knowing it's him and I don't have to worry about what mum is getting up to.

Carastro, it's perfectly normal to feel guilty, my mum has been in her care home since December and I still feel the same every time I go there, worse when my dad passed away recently. But, I look back at some of my posts here, when I was so worried about her deteriorating and how stressed we became as a family and know that I have doen the right thing and she is in a home where people care for her. She is always anxious and a bit tearful and again that upsets me, especially when I have to leave, but I know that the carers will see this and talk with her to distract her and hopefully it is forgotten very quickly. I take her out and we have a nice time, but that too will be forgotten as quickly as the anxious moments. She lives in the 'now', and I am at last accepting that - even though people have been saying it to me for ages, but I had to have time and be convinced myself. I found a big note yesterday when I was clearing, that I used to stick on the inside of the door - ' mum, don't go out, wait for me to come home', a reminder of the time she first wandered and the beginning of the end for me being able to care for her here.

It is horrible clearing her things and I have kept some of them myself, which have memories for me. Lots of hugs to you xxx

 

[vdg]

I understand totally how you feel. I still worry that one day Mum will get better and demand her home and things back.Daft really as I know she never will get better but I think it's part of how the guilt affects me.

 

[carastro]

Many thanks for all your replies, it is reassuring to know that what I am feeling is normal.

As you say I keep thinking "what if she wants to come home", most of her things are gone now, but then I have to remind myself that it's not an option. I have taken as many things as possible into the Home, made up montage's of family photos, and photo albums, much of her HUGE HUGE Wardrobe we are storing in our own homes so we can interchange her clothes from time to time.

Hopefully as you say she will forget where Home was, but then I feel guilty about wishing her memory to get even worse.

There was I thinking that our problems would be solved once we got her into a Home (and trying to actually find a vacancy was a miracle in itself), but now find we have replaced the problems with a different set of problems.

At least we know she is safe and being looked after well now.

Many thanks once again.

Carastro

 

[carastro]

A few more feelings of guilt are that of lying to my mum and having to be devious to avoid upset.

For example. We are planning to rent out her flat (she actually signed it over to myself and my brother 6 years ago, so the rent is legally ours), but we intend to use the income to top up her fees once we have to involve the social services. We have told her we are planning to rent out the flat, but the trouble is she has forgotten she signed it over to us.

She wanted to go back to her flat when a friend collected her recently to take her away for a few days break. We had to ring the friend and tell him not to take her there as she would be devastated to see where we have cleared her belongings. We also managed to remove her keys from her handbag just to make sure.

Also she would be horrified to know how much her Care Home fees are, so we have lied to her and told her the social services are paying most of it, but they are not and won't be until her money has whittled down to the required limit.

She also gets upset if I take her any more items into the Home such as more of her clothes, a New TV etc as she thinks she has to pack it all up when she goes to stay with her friend for a few days. So I am having to sneak extra clothes etc into the Home when she is not looking, or while she is away and hope she doesn't notice.

I really hate lying to her and am torn between wanting to be truthful and trying to avoid upsetting her.

Does any-one have advice or experience on this?

Thanks

Carastro

 

[Chemmy]

White lies to keep her content are the order of the day. We all do it - don't feel guilty.

My mum has been in her CH for over seven years. I cleared her house and took loads of stuff back here which I've gradually whittled away at over the years - you'll realise your kids won't want granny's old toaster 'cos they can pick up a new one in the supermarket for peanuts.

I've still got a couple of boxes of things up in the loft that I still can't bring myself to dispose of. But they're not doing any harm so I'll leave them till I'm ready.

We were burgled last year and my mum's & gran's jewellery was stolen, including Mum's engagement ring. It doesn't get much worse than that but do you know what - it's only 'stuff'. She didn't need it any more, I wouldn't wear it so I've bought some nice pieces of my choosing which I wear in memory of them both and that actually gives me far more pleasure than keeping bits stashed away in a drawer.

 

[frazzled1]

I guess I just need a bit of moral support here.

Mum has vascular dementia and was unsafe to be left on her own any more:
Getting lost (in her own home and wandering out into the communal area of her flats looking for the breakfast room - not a warden assisted place).
Found a plastic plate melted in a mini cooker (she obviously thought it was a microwave.
Could not cope with new digital TV
Not eating properly
Balance problem and often fell
Did not recognise her own flat and getting frequent phone calls, "How do I get home"
Messing up her medications
etc etc

Managed to get her into a Care Home, though she didn't want to go.
Now having to clear her flat.

My problem is mum often asks to "come home", says she is not staying in the Care Home
Doesn't want us to get rid of her things (but we have no choice), we are trying to hold on to as much as possible and divide things amongst members of the family, or sell things.

She has some periods of reasonable lucidness, but often completely confused, so it's really difficult.

Just would like to know if it is normal to feel so guilty about putting her in a Home and getting rid of her things knowing she doesn't like it. Also is it best to tell white lies rather than be truthful.

Carastro
Managed

Hi there,

This is one of the most stressful things you will have to do in your life. Its normal to feel guilty about placing someone in a care home, but its normal to feel guilty about pretty much everything else you do in life as well though!! I watched this programme on TV which was heartbreakingly sad, called "Hoarders"...about people who couldnt let go of any stuff, and piled high so much rubbish that they were literally sitting in their own homes waiting to fall over and into it and die.......if you had seen that programme you would have done a clearance in record time, just keeping literally a handful of sentimental or useful stuff! The guilt will ease when you think that now she is safe and looked after in a care home, and when you need care and supervision 24/7, you really have little other choice. Big hug and hope you feel o.k. now

 

[Witzend]

A few more feelings of guilt are that of lying to my mum and having to be devious to avoid upset.

I really hate lying to her and am torn between wanting to be truthful and trying to avoid upsetting her.

Does any-one have advice or experience on this?

I think we all hate fibbing to them - it goes right against the grain at first, but gradually you realise that if the truth is only going to upset them - and they're going to forget whatever you say so quickly anway - then fibs are the kindest option. That's how you have to think of it - fibbing to be kind.

I must have told literally hundreds of fibs over the past 5 years - I have whole repertoire of them now - but IMO they're always better than any distressing truth, when there's absolutely nothing you can do about the truth to make it better anyway.

I did once tell my mother how much her CH fees were - but only in the early days when she was furious with us all for putting her there (must stress that there was really no other option by then) and got very nasty, saying for the nth time that she was cutting us all out of her will. I was upset enough to retort - just the once - 'There won't BE any money left - do you realise how much this place costs??' And I told her. Of course she had a complete fit, but since I knew she'd forget after 2 seconds anyway..

But that was then, she's well past the 'nasty' stage now, though still asking to go 'home', not that she has a clue where that is any more.

PS - I was going to go and see her this afternoon, only I noticed yesterday that there was a large crack at the bottom of my windscreen and the bl**dy insurers can't fix it till Friday afternoon. And yet I've got an Autoglass literally two minutes down the road! 'Oh, we don't use them.'
Why does everything always have to be so s*dding difficult???

 

[carastro]

Thanks Frazzled and Witzend, I am so glad I found this website, it's made me feel so much better to know I am not alone in my feelings and to be reassured I am doing the right thing.

I am going to introduce my 93 year old next door neighbours daughter to this site as she too is having a difficult time.

Carastro

 

[zeeeb]

It's hard, but it's probably even harder if the person going into the home does know whats going on, and doesn't have dementia.

At least with dementia, you can tell her that she's just staying here for a little while and can go back home in a few weeks. then she will forget, and keep asking. You can keep her dream alive that she'll be going back home, going on holiday etc. give her something to look forward to, brighten up her day.

My 96 year old grandmother inlaw still thinks she's going back home, and she's been in a nursing home for probably 8 years. it's the big topic of conversation when anyone visits. Oh, john's coming to pick me up tomorrow, and we're going to melbourne. it's the thing she looks forward to. she talks about packing and getting ready to go. i guess it's a better mindspace than just thinking she's going to be stuck in a locked up home, for the rest of her days, so we go along with her.

Sometimes I think it's better that they don't know whats going on, you can change the subject onto the topics that you know they love, and brighten up their day. As opposed to people without dementia, they are aware when people die, they are aware that other patients are incontient and sometimes act a bit crazy, it would be depressing.

My grandmother in law, she doesn't seem to notice that she has no teeth, hasn't had a haircut in a couple of years (won't go to the dentist or hairdresser). She comments on how old we look, but seems totally unaware that she's 96. I'm sure if she looked in the mirror, she'd be thinking "oh my god, who's that scruffy old woman?"

 

[Witzend]

Sometimes I think it's better that they don't know whats going on, you can change the subject onto the topics that you know they love, and brighten up their day.

Oh, Lord, I wish there were anything I could talk about that would brighten up my mother's day. She is simply not interested in anything, except very superficially for about half a second. There is no conversation to be had - practically all she ever says is, 'Can we go home now?'

The only time she ever really shows any interest is when I say (maybe 3 times each visit), 'Would you like a cup of tea?'
'Ooh, yes.' Thank God for tea.

Her sister died last year - they never got on very well and quite apart from the fact that she's a bit beyond registering such things, I knew she wouldn't be upset, so I told her, just for something to say.
And since then I've told her again and again, just for something to say that might distract her just for 2 seconds from the endless 'going home'.

How awful is that? And probably even more awful that I don't feel a bit bad about it.

 

[frazzled1]

how are you feeling today?? permission granted NOT TO FEEL GUILTY!!! xxx

 

[carastro]

Feeling a lot better today thanks to the posts on here. I am so glad I have found this forum and find I can also offer advice to others having also had a previous experience with MIL. MIL was quite a different personality to my mother and she just went where she was put and never queried it. We had her live with us for 20 months before we put her in a Home and she thought she was in a Nursing Home when she was here anyway.

My mum on the other hand would be impossible to live with for a number of reasons which I won't go into and the only solution was a Care Home. I guess this is another reason why I am feeling guilty.

Carastro

 

[Witzend]

Glad you're feeling better.

My mum on the other hand would be impossible to live with for a number of reasons which I won't go into and the only solution was a Care Home. I guess this is another reason why I am feeling guilty.

Carastro

I could never have had my mother here long-term, either - she was never 'easy' even before the AD. But I still feel dreadful when she occasionally says, 'Can I come home with you?'

 

[carastro]

Yes I've had that one too made me feel really awful.

We do have a life line, though not sure how long that is going to last. She formed a relationship with a widower a few years ago and up until recently she has been spending 3 weeks with him and 1 week back home. He has been really good and caring but he is 86 himself. He was finding it really difficult to cope with her increasing dementia and we knew that the time might come when he would crack and then we would have her home 24/7 and not safe to be on her own. Plus we didn't think it was fair on him to have such a burden.

He is still willing to have her stay, but now it is reversed. He only has her for 1 week at a time and she stays in the Care Home for 3 weeks. So it does give her a little bit of normality from time to time. We felt it would be too cruel to stop her visits to her gentleman friend AND go into a Home all at the same time. I suspect the visits will slowly decline over time.

It does give her something to look forward to though and I bring her home sometimes for a break where she sits and scowls at my husband for not being more chatty (as she has forgotten how horrid she's been to him all our married life and one of the reasons we could not have her live here).

Carastro