Is it really benefiting my mum not to see us?

[coronade]

My mum has advanced dementia and is 90 yrs old. She is in a specialist care home with 15 other residents of a similar age all with dementia. I haven’t seen her for 5 weeks now (they locked down earlier). I can’t speak to her on the phone as it would confuse her more.

Under the current thinking I might not get to see her till she’s been vaccinated which could be a year away at least. In this time she will have probably forgotten me or died of something else.
She realistically could die at any point due to her age. The thought of this happening and me not having seen her for weeks is breaking my heart.
Surely in cases where people have a terminal, debilitating illness like dementia the risk of getting the virus and dying a few weeks or months earlier than they would have is worth it for the benefits of seeing close family.

Mumsnet (pressed post to quick).

I’m not jumping to the negative response! I hate facebook and would never agree to my photo appearing. I don’t think my relatives should be allowed to agree on my behalf either.
Maybe I’m just out of step with modern life

My mother's home keep us up to date with what they are doing and post daily photos and videos.
It's lovely to see them and to see how much the staff care and go the extra mile not just now, but also before Coronavirus.

It's rubbish. I take a calculated and minimised risk to see my parents. They live locally and mum is struggling with dad's dementia and continence. They can't have carers coming in and out so the GP said yes I could go on and out. Me, DH and DD are living as hermits, only maki g one trip to supermarket each week if I haven't managed to secure a delivery. Dad frequently falls and we figure it's safer for me to pick him up than an ambulance driver whose been put in the community.
If they were in a home though I dread to think - it just wouldn't be possible.
I don't hug them when I go round and only make physical contact if I have to help dad up.

Sorry you're so isolated from your DM

It is spreading so wildly in care homes, can you imagine how you’d feel after the visit to hear there was an outbreak that could ave been down to you?

I wouldn’t want to risk that.

@TheoneandObi Why can't they have carers in? loads of people still have carers coming in. If your mum is struggling then she/you need to talk to your local adult social work about support. There are various options. In our area respite care is continuing. Even someone coming into few times a week to help with a bath/shower. Services haven't stopped because of COVID they have just changed. They would rather support your Mum to cope than to have to pick up the pieces of Carer breakdown.

It’s not that they can’t.
It’s more that their change in circumstances has coincided with the lockdown almost precisely, and the 1. Local carer companies are stretched because staff are self isolating, and 2. My parents felt it wasn’t worth the risk for a fairly healthy 79 year old and vulnerable 83 year old to have different carers coming in and out who can’t social distance with any of their clients. GP agreed that if they could manage (just about!) they ought. So I’m providing what back up I can

My DM died just before Coronavirus and I'm thankful both for and to her that she did. I would have been desperately sad to be in your position. It is a miserable situation for you both.

Have you asked if the home can organise a Skype or FaceTime call? When we were away on an extended holiday one of the entertainment team offered to set this up if we wanted.

Even if your DM can't speak, she will be able to hear and see you, and probably understand a lot of what you say to her.

Contact between residents and their families is something care homes ought to be actively considering and I would be tempted to go to the manager, or even the owner, to see what plans they have.

That's a bit harsh. The OP's mum may have all kinds of complex needs alongside it because of the advanced dementia.

Solo mummy, what a horrible thing to say!

SoloMummy I did have my DM living with me, for three and a half years, until she became a danger to herself, and us. Sorry, but you don't know what you're talking about. Dementia is a game changer, as anyone who has lived with it as a carer will tell you.

My are some people so horrible on Mumsnet. Dementia is an awful disease and I would not wish it on my worst enemy or any of their family members.
If I had an endless supply of money then maybe she could have stayed in her own house with 24 hour care but as this costs thousands of pounds a month it isn’t an option for many people. My mum has broken her hip, pelvis and shoulder in the last 12 months. She is double incontinent and gets bad sun downing. She can’t be left alone for 5 minutes and she is awake all night. So no I couldn’t cope with looking after her at my home. If that makes a shit daughter Solomummy then congratulations I agree with you.

Oh wow @ SoloMummy.
Don't give up the day job with the diplomatic corps.

Coronado it doesn't make you a shit daughter. We all know that.

Some people on here are shit humans though.

SoloMummy, have you any idea of the level of care needed in many people’s cases? Ever spent proper amounts of time with someone with severe dementia? It’s not “just being forgetful and some incontinence”.

My father is 6’2”, aggressive, non-mobile. He needs 2-to-1 care available 24/7 (and a nurse twice a day).
It would be unaffordable to pay professionals to do this in his own home.

I’m in my early 40’s and have primary school age child. Should both myself and my husband quit work to care for him? Who pays for our living costs?

You're not hearing this are you? Every case and set of needs are different. I didn't hear hand wringing of any kind from OP, just deep concern. We're alll in uncharted territory and all our elderly parents have differ combinations of needs.
Good for you that you have the set up which suits your parent's needs. If my elderly dad who has dementia, with sundowning as well as incontinence and mobility issues was to move in with me we'd have to move! Plus I don't have the expertise. Presumably you do?

OP, ignore solomummy. It is simply not safe to bring someone with complex needs home to an ordinary house without the right level of support and it’s extremely difficult to get support at the moment, because of the crisis.

When lockdown happened, my first instinct was to bring my mum home from the hospice and she herself pointed out to me how complex her care was and how it couldn’t be managed at home. She herself would have been stressed by an inadequate environment for her needs.

There are no easy answers in this situation.

@coronade it’s really hard. I am in a similar boat to you with both of my parents in different care homes. One has dementia the other a terminal illness.

I find solomummy’s comments utterly offensive. The parent with a terminal illness is in a care home because that’s the only place that the hospital would discharge them to. It’s not a question of priorities or us not caring enough to look after them at home. We exhausted all those options first. For my parent with dementia they need to be in a specialist dementia home for their own safety and safeguarding. Before moving there they regularly went missing as well as displayed incredibly risky behaviour that put themselves and other people at serious risk of harm.

I would much rather both were at home with round the clock family or carers looking after them. I’d much rather they both weren’t so ill. I also wish I could go and visit them during lockdown but I can’t.

Huge sympathy and empathy to you @coronade and everyone else in similar situations.

I did manage to keep my mum at home for 3 yrs after diagnosis, With several carers a day and me visiting 3 times every day. I did not have the room to move her in with me ( unless I made one of my children sleep in the car on the drive) and she was no longer safe in her own home. She didn’t know night and day, was continually asking strangers into the house, going out in the middle of the night, doing very dangerous things indoors and I had lots of complaints from neighbours. I feel guilty every single day that I could not keep her at home but she was just not safe. Some stranger on Mumsnet can not make me feel any worse than I already do. My choice was made out of Love not because I couldn’t be bothered to look after her myself. I will freely admit that I could no longer cope and it really was her or me as I was close to breaking point.

”Some stranger on Mumsnet can not make me feel any worse than I already do. My choice was made out of Love not because I couldn’t be bothered to look after her myself”

That absolutely resonated with me because that’s exactly how I felt / feel.

Anyone who has been in your position OP will fully understand. And a few who haven't but who are decent souls who have empathy. You/we have nothing to feel guilty for, but you/we do, because we love them.

Op, the only good thing about losing mum nearly 8 years ago now, is the fact I don't need to worry about her just now. I looked after her too. If she had been at home I'd have had to visit her, absolutely no choice there. If she had been in a home and I couldn't have visited I'd have been broken. I can't imagine much worse.
Do what's right for you

I started the elderly parents section on here about ten years ago as I was almost broken by it too. You have my sympathies. Unless you've been there, you can't comment. And if you have been there, you would never judge.