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Massive decision and guilt - Carers UK Forum

Massive decision and guilt

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In 2010, my Dad died and Mum was left alone. My husband and I would visit mum every day to make sure she was ok and on my days off I would take mum out. This went on for seven years and mum became more vulnerable until 2015 when she suffered three heart attacks. We stepped up our care for her whilst we held down stressful jobs. Sadly my cries for help for my siblings fell on deaf ears. In 2016, mum said she wanted to move in with us as she was lonely, but she did not want to sell her home. This was not a problem and we funded the venture. The day we completed mums new rooms I drove her to our new home and sadly she suffered a mini stroke and was rushed to hospital. Mum came back to our new home and it all went well until The end of last year and sadly mum had further medical complications and had to go back into hospital. The Doctors decided that due to mums medical conditions and her dementia it was safer doe her to live in a nursing home. I looked at over seven and eventually found one 14 miles away. The dementia hit fast and overnight mum went from an articulate lady to a lady who cannot recall her own siblings or my siblings or grandchildren and her only question is " why am I here". I know that mum being in a nursing home is the best place for her, but I still feel incredibly guilty for not being able to let mum return to us. Especially as I know she never wanted to go into a nursing home. After 7 years of seeing mum every day I am having to step back which means not visiting mum every day.
Denise, don't feel guilty, you have done nothing wrong, on the contrary, you did everything possible for mum. You didn't make her ill, you didn't give her dementia. When it became clear that she NEEDED residential care, you loved her so much that you found the very best place for her. Feel proud of what you did, feel sad, not guilty that she now needs more care than one person could ever give.
Now be kind to yourself, after the roller coaster ride of the last few months. Ask your GP for something to help you relax and sleep if you are struggling.
Hello Denise
Mum asking 'why am I here' doesn't mean she she knows she's in a residential Home. She'll certainly won't be knowing it is for her own safety and care. She would be confused wherever she is. She may well be thinking she should be in her childhood home for example, or away on holiday.
Yes it is sad, but that's all it is, very sad. You gave Mum care for 6 or 7 years and are a wonderful daughter. She knows this deep down, as do we all
My husband is in a nursing home. He sometimes thinks he's in a hotel or a flat. Other times a hospital. The staff explained to me that it can take 3months or more for residents to ' settle'. Please try not to let the guilt monster, (as it's called on the forum,) get to you. It's very hard, and it does try to attack. You deserve some time for yourself now and your husband. Allow yourself this, then visiting your mum will be emotionally less draining.
Hi Denise
So many of our very elderly parents are in a Home because they NEED to be. However often they have gone past the point where they can understand. If Mum was back home with you, in a house which would be just as unfamiliar, she might well be asking the same question or asking you to take her back to her old home. Just as stressful for you. As her new environment becomes more usual to her she may well stop fretting. If you can find an answer that seems to satisfy her at the time of asking, like 'you've been poorly Mum, the doctor says you must stay for a while', then you can use that every time she asks, as she will have forgotten that she asked or that you answered the last time.
It's very sad. Remind yourself that that's what it is -sad. Not blameworthy, not something to be guilty about but sad. If you are satisfied that your Mum is well treated, clean, warm, comfortable and with caring people to look after her then that is really all you can do. You cannot make her well, you cannot roll back the years and you cannot turn yourself into a whole team of carers and nurses in order to cope with her needs.
What you can do is look after yourself and take some time now to enjoy life with your husband. Don't beat yourself up about something you cannot possibly 'fix'.
I'll add my voice to the others, all of which I second! I would say the 'where am I' would indeed apply to anywhere your mum is - the dementia has made it impossible for her to realise the whereabouts of her surroundings. Please do be aware yourself, as I have become aware with my MIL with dementia, that what 'we' think is important is far less so for someone with dementia. My MIL was in a beautiful care home, with spectacular views over the countryside and coast, a really lovely open outlook, and big gardends - she had to leave as she was forever wandering out and it wasn't a secure unit, where, sadly, she now is, in a home that has no some views or outlook, far more enclosed and 'restricted' (because it has to be secure for wandering residents) - but MIL has not the foggiest notion that her 'lovely home' (to me) has been replaced by such a restricted place! I used to say to her at the old place 'Oh, what lovely views!' and she was oblivious to it.

What she is NOT oblivious to is the care and attention of the staff. THAT has now become the most important thing for her, the 'cossetting' that goes on, with staff chatting to her, paying her attention, guiding her around, making her comfortable, joking with her, getting her to smile and laugh, making her feel 'safe'. The 'where' of where she is is no longer important to her.

So this may be similar with your mum now.

As for the guilt, it's VERY hard to shift, even when we know with our heads that they HAVE to be where they are now - it's the price, as another forum member reminds us, of living to the age they are.....- yet with our hearts we just want them 'home'.

Another member here urges we stop calling it 'guilt' and start calling it what it really is 'sadness' - we are just SAD that our elders have come to this pass.

We all dream of the 'ideal' way to end their days - that they should be 'at home' with their family 'all around', fading away and one day 'passing in the night' or surrounded by all their descendents, etc etc. But, sadly, given the state of medical science at the moment (able to keep bodies limpoing along, but not minds healthy.....) this really isn't likely for most of our parents' generation.
Just a thought, and it may not be possible, given your mum's state now, but I'll put it forward all the same, is this:

Before my MIL got too advanced in her dementia, she was able to come back to me for 'sleepovers'. I used to collected her twice a week, and we'd be out for the afternoon, then back to me, and tea/supper watching TV etc together, then she'd sleep in her old bedroom, and have breakfast the next morning, then I'd drive her back to the home for lunchtime.

It seemed to work well enough, and to my mind is a good 'compromise', providing, of course, the dementia is not such that they get confused or distressed by the changing places, which, alas, might be.

But maybe, if it works, you could have your mum 'home for the weekends'???

Like I say, just a thought!