My Mum is dying

[Afishcalledwonderful]

My poor Mum went into a care home at the end of July with early onset Alzheimer's (she's 73) and something called Capgras Syndrome (a rare illness where you think the person you are closest too has been replaced by an imposter) in this case, my Dad whom she has been with 1966. It has been awful.

She stopped eating last week and we were told she was nearing then end. Then on Monday, she tested positive for Covid and is in the midst of a fever - the care home have given her 5 days.

The pain myself and family are feeling right now is indescribable. After all these months of zoom calls and window visits she is now dying and we are allowed to visit. My Dad has stage 3 lymphoma (lymph node cancer) and has been advised not to. I have chronic asthma and I am really scared about catching this virus myself and passing it on to my Dad or family. I know my Mum and she absolutely would not want us to put our health at risk but my heart is breaking that she is dying all alone. I am so torn about what to do but running out of time. I am a single parent to DS6 who I'm homeschooling although he is with his Dad today. If I see Mum I will need to self isolate afterwards so my son would have to stay with his Dad and I don't want that either. I can even see my Mum now telling me not to visit. We were very close. This is so hard.

I am so sorry that you are in this position. I hope that you can reach some peace with it. For what it is worth I wouldn't want my daughter visiting me in those circumstances.

I’m so sorry you are in such a difficult position. Agree you have to make peace with whatever you decide. My personal opinion is that I would visit. I speak purely from my own experience of being with my dad when he passed. Granted the world was not in the state it is now. Thinking of you x

So sorry to hear this. I would go but it is a very personal decision.

So sorry, dementia is a horrible disease. Only suggestion I have is, can you source a proper medical grade filtered mask (n95 or fp3 something)? They give good protection for you. We lost to dementia just before Christmas so it's still pretty raw, couldn't travel due to last lockdown, it sucks basically - bad enough loosing a loved one without restrictions and masks

This is so hard. But I too would go. I think that I would want to see my mum one last time, even if she didn’t recognise me and even if it meant my DS staying away for a few more weeks.

So sorry, what an awful decision to make. There is no right or wrong decision but you need to be at peace with what you decide in difficult circumstances.
Personally I think I would visit mum as it may help you as you grieve.
Im not entirely sure you would need to isolate from your son, depends on how you feel but I would think it would be ok for him to come home to you and not to isolate with his dad if thats what you wanted 💐

So sorry to hear of the impossible situation you and your family are in.

Is your Mom aware of her surroundings? What I mean to ask is if you went would she know you are there? Would she benefit from you visiting?

Not to stay at his dads and to isolate with you!

I'm so sorry.

Looking a bit further ahead than the immediate practicalities of self-isolation which is very very short term, longer term which feels the least bad option that you will be able to live with (regardless of what you think your mum might have told you to do)?

I'm so sorry - the positions people are being put into in such circumstances are heartbreaking and I really feel for you and your dad.

What I would say, and perhaps try to concentrate on, is that you know your mum would never wish you to compromise your own health. When she passes you'll undoubtedly want to support your dad, and take comfort from each other, which would be impossible in the immediate aftermath if you were isolating. In a similar vein, you'd also not be able to help your son during that same period if he'd had to go to his dad's. It's dreadfully, awfully harsh and I wish things were different for you but I would personally prioritise those left behind, albeit it's a horrible choice to have to make. Nobody would blame you, least of all your mum.

I completely appreciate your distress at your mum being on her own when she passes. My understanding is that hospital staff are making every effort to ensure that doesn't happen and she has a dignified passing with kindness. Are there any other members of your family who aren't at particular risk who might be prepared to take on the role you and/your dad would naturally perform if things were normal? I know that's not the same but it could offer you and your dad some slight reassurance if she could be with someone who knows her personally.

Maybe if you had the appropriate PPE you would not have to self isolate. I don't self isolate after being with covid patients if I have worn the appropriate PPE. You would have to isolate if you got symptoms.
I would go so you don't regret it.
Sorry to hear this. Covid is a bastard.

I'm so sorry OP. My Nan died from Covid in October my DM made the choice not to visit as she didnt want to risk catching it herself. It was hard but my DM said she had many years of happy memories and that's how she wanted to remember her. She found looking at old photos and thinking about her helped. Im sure she wont be alone, a carer will be with her.

Oh OP what a dreadful, painful situation you are in.

Just to add balance I would probably not go. We are quite a cautious family and I know my mum wouldn’t want me to go either.

But it doesn’t matter what I or any other posters would do. You know your mum and you know yourself, so the only right decision is the one you will come to.

I am so sorry you and your family are going through this.
There is no right or wrong decision.
Would your mum know you were there if you did go?
The beloved father of a nurse friend was in this same position, in a nursing home dying of covid. She made the difficult decision not to go, as she knew he was well cared for and that his dementia meant he did not know her.

So sorry to hear OP, I hope you can treasure the memories you have with her, but being with my mum as she passed last year (before viral risk) is something that gave me huge relief and comfort.

Sorry OP. We are in the same situation as you. DM and Step Dad both in a care home together, 92 and 86. Step Dad died on Wednesday, and his son was able to visit him, and was with him when he died.

My eldest brother visited on Tuesday, and saw both of them. He said it was really awful, and he didn't cope veyr well. Neither knew or acknowledged that he was there, but both had a member of staff with them, so they were not alone.

My other brother visited DM last night, and has said she was with another member of staff, and a district nurse also visited. So I am happy that the home is being very caring, and medically appropriate. They are such lovely and caring people, can't praise them enough.

I have decided not to go, and older brother will not go again, and additionally he is also vulnerable, so I support him in this, in fact I encouraged him not to visit again. I am just choosing not to go, and can make peace with that.

I think you have to do what feels right for you. Everyone is different, and every family has a difficult decision to make at the moment. Never feel guilty for your decision though, as most of our parents, particularly when they are elderly, are very stoic, and practical, and wouldn't actually want any fuss or bother at the end.

Best wishes to you and your family.

I'm so sorry. This is almost exactly what happened with my mum - she went into a care home last March with dementia, settled really well and then 2 weeks later stopped eating and drinking. They tested her for Covid as she had one day with a temperature, but she had no other symptoms, but the test didn't come back till the day she died.
The GP prescribed end of life drugs after she hadn't eaten or drunk for a week, and the nurses were able to use them to keep her very comfortable to the end.
I didn't go and see mum - she didn't know me and I thought it might even agitate her more, and although it was very hard, the lovely nurses would talk to me anytime and one of them said a rosary by her bed and got a priest to do a blessing via Zoom the last day which was a comfort to me that we'd done all possible

@Afishcalledwonderful I'm so sorry, this is awful for you. I'm in the same age group as your lovely Mum. Your Mum knows how much you love her, even if she is ill and maybe doesn't remember. If I was in her position, I wouldn't want you risking your health to visit. This is so sad, but I don't think you should go. Think of it this way. It would be for your benefit, because she probably wouldn't understand that you were there. Do what you know would be her wish, and stay home.

I am sorry you are going through this.

If it brings you any comfort, I am a carer and I can assure you that since 1996 when I started, not once in any of the homes I’ve worked in has anyone died alone (unless very suddenly like a stroke or heart attack). We come in on our days off to sit with a dying person if we think they will be alone. I would strongly expect your mothers care home will be no exception. Even with covid.

My thoughts are with you and your mum

Sorry OP 😢. So sad.

As others have said. I’d go with full PPE, get the care home to advise you if you are not sure what to use. When you get home change clothes and shower. Should then not need to self isolate unless you are extremely unlucky and show symptoms.

It’s not 100% risk free but the risk of being infected wearing PPE is low. And saying goodbye is so important.

OP I am so feeling for you. What an awful position to be in.

I would go too, with as much PPE as I could wear and not see anyone at risk afterwards. Asthma seems to be okay with covid in the main, my SIL and nieces caught covid and they have severe asthma and were all fine. That would not stop me.

Your mother loves you - is she well enough to face time op?

She will want you to stay well, sorry I missed that from my last sentence.

I'm so sorry OP.

Your mum likely wouldn't want you to see her as she is now, and would rather have you remember her as she was the last time you saw her properly. She would want you to be safe as all good mothers would.

She won't be alone, she'll have someone with her. She's safe and loved and will be made as comfortable as possible.

I hope you find peace with your loss.

Goddamn that's cruel, OP. You poor, poor soul. No decision is the wrong one. Not seeing your mum is entirely reasonable and understandable, if you decide not to take the risk. I've nearly lost DH to covid. He's just returned home after spending 2 weeks in ICU with covid and it was very touch and go. Seeing what it did to him here at home before he was admitted, going through the white knuckle ride of almost losing him, and welcoming this shell of a man back home has been traumatic. Who knew 3 weeks of a virus could be so life-changing? I lived in fear as well that my kids would get it and end up in a terrible way. I feared everything. Now I worry about how this virus will impact DH's lifespan- if it will at all. I shouldn't go there, but I think the trauma of this virus and the way it's impacted my own family has made me think it's just not worth the risk. It's a very non-linear virus. We don't know how each one of us will be individually affected by it. You can't realisitically tell yourself you won't get it from your mum and that even if you do, you'll be ok. It's the unknown factor that is the scariest. In your shoes, I would not go in. How horrible and heartbreaking a decisions is this? Well, it's the worst decision you'll ever have to make. But your mum, god knows, would want you to protect yourself, your children, your beloved and very vulnerable dad.

She will be loved and cared for until the end. She will be in good loving hands. She knows she's loved by you. She's had a lifetime of your love and she will ride out on that wave. It will be ok, OP.

I am sorry. I worry that I've totally convinced you not to go in. I am coming from a rather traumatised position, so perhaps I am overreacting. You have to do what is right for you. There is no wrong here. And full PPE will be absolutely sufficient. But God... what a place to be in, you poor, poor, poor love. I absolutely ache for you, OP.