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Not ready for this

Tinker22

Registered User
Aug 17, 2017
4
Mum was diagnosed with Denentia last June, everything was fine until Christmas day when I found her at the bottom of the stairs half naked, and very confused. To cut a Very long story short, mum has been in four different hospitals since then and is now in a lovely mental health unit. All was going well until a couple of weeks ago when she started refusing food and fluids. With a fair amount of coaxing she did start again but this has happened twice since and this time she is not responding well. We haven't been able to visit mum because of the virus, but yesterday we were called to the hospital as mum has deteriorated rapidly, very low blood pressure and temp, and is sleeping constantly.
The Dr told us that hospice care have been contacted and will now only be giving palliative care to keep her comfortable. We were allowed to sit with her thankfully, and have been told we can visit one at a time now. I asked if they thought this was the beginning of the end and if mum could come home. The Dr said yes and they would check. This is where my heartbreak begins.
The hospital rang this morning to say that she could come home and would make arrangements. My two sisters though (there are three of us) don't want mum to come home and I suppose I should go with the majority. But mum would hate to die in hospital, she always made us promise not to put her in a nursing home, and I feel so guilty that this is what is going to happen.
My head says she is probably better off where she is, but my heart is breaking, I want her to be comfortable in her own home, surrounded by people she loves, but this cant happen either because of the one carer rule. Sorry to waffle on, but I don't have anyone else to talk to, I would usually confide in my sisters but that's not an option now.
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,278
Merseyside
I’m so sorry to read your news @Tinker22. I wish you strength at this difficult time. Please keep posting as you’ll get lots of support here.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,034
Yorkshire
Oh @Tinker22 so sorry that your mum is so poorly
Your mum might have hoped to end her days at home, maybe try to think that in many ways her children are home for her and so your visits will be what matters
Post here at any time, it helps to get stuff off your chest
 

Banjomansmate

Registered User
Jan 13, 2019
1,746
Dorset
You say you want your Mum to be at home, is that her own home or with you or another sibling? Will she need a hospital bed and carers/nursing to look after her? How many people will be involved coming in to the house each day? Can you look after her by yourself 24 hours a day? You have no idea how long this could last.
Whilst I understand your feelings I think you need to consider all the practicalities of this. A good hospice can look after your Mum very well and, to be blunt, she could well be unaware of where she is. As long as she is cared for and family members can take it in turns to be with her if they wish, I would think that is the important thing.
 

Jessbow

Registered User
Mar 1, 2013
3,014
West Hertfordshire
You'll possibly find when all comes to all, that a hospice may be more relaxed about visiting, especially as the end draws close.

They are fab places- please dont dismiss it.

Caring for her yourself 24/7 for however long is almost impossible, especially at the moment.

My M in law aged 90 in sept had a fall, long story short- recieved CPR, and is now home, with broken ankle, broken sternum and broken ribs. had 8 days in hospital. No where near well enough to be home, no carers availible, and cannot source even a pendant to call us if she falls- demand is outstripping supply where we live.

No dementia fortunately but even so. its exhausting
 

Duggies-girl

Registered User
Sep 6, 2017
1,848
Hi @Tinker22 I kept dad at home until the very end. He died of cancer two months ago. It seemed important to him to be at home so we had a hospital bed and a carer twice a day to get him in and out of bed and give him a wash. It worked out okay but the last few days were not good.

I wish that dad had gone into a hospice where there are staff who are trained to help move him and clean him. Dad remained continent throughout his dementia but the cancer took away his mobility during the last couple of days and although we muddled through we could have done better. Dad lost his swallow the day before he died so I could not give him any morphine and the district nurse was less than helpful and that could have been managed much better in a hospice.

Dad kept asking me where he was and I would tell him he was in his own home and I would tell him his address and this seemed to make him happy but in all honesty he could have been anywhere because he couldn't recognise where he was. If he had been in the hospice, I could have told him that he was at home and he would not have known any different. I think his eyesight was fading or perhaps he was just seeing things, he certainly saw a lot of people who were not there at all.

It is a tough choice and like me you want to do the very best for them but in dads case I wish he had gone into the hospice. I had my husband to help me at the end and I know that I could not have coped on my own. I will add that dad died peacefully in the end with myself and my brother at his side.

Wishing you well and lots of strength.
 

LynneMcV

Volunteer Moderator
May 9, 2012
3,943
south-east London
I am sorry to hear your news @Tinker22 and I can understand why you are struggling with this decision.

When my husband was placed on palliative care I was thankful for him being in hospital with expert help around 24/7 as things got quite traumatic at times. Before we had reached that point I had always expected to nurse him through those final stages at home but I know now that it would have been too much - and that was at a time before we had all the restrictions around visitors and carers.

My husband really didn't know where he was at that end stage - and I was just grateful that he was kept pain free and that I could be by his side to comfort him - with experts to hand to answer any worries I had.

I am glad that the hospice is allowing visits - even if only one a time. It will bring comfort to you and your family knowing that they can visit and I am sure your mum will be aware of their presence.

I can't tell you which way to go in your situation, whatever choice you make will be the right one because it comes from a place of love.
 

Tinker22

Registered User
Aug 17, 2017
4
Thank you all so much for the replies, I suppose deep down I know she is in the right place, the staff are wonderful and care for her brilliantly x