To hope she dies?

[soulasylum]

OK this is going to sound awful and I'm expecting some of you to condemn me for this.

My nan has been in a care home for the past 18 months. Dementia has taken hold - she is a shell of the woman she once was. Multiple heart attacks, struck down with pneumonia last year, and still she pulls through.

Now this woman is a huge part of my life. I love her dearly and cherish her. She was a second mum to me growing up. She was clean, tidy, intelligent. Survived WW2 and her husband dying young. An incredible, strong woman all around.

To see her like this it's...heartbreaking.

I want her to fall asleep tonight and not wake up tomorrow. I want her to be at peace. I want her to be free, from medication and the care home and the fear of another heart attack or bout of illness.

I sound heartless, I know I do. Please tell me there are others of you out there, who have been through this and can understand my feelings.

It's an awful time.

I had a similar experience with my mother and aunt, both of whom I arranged care for. At one stage my mother asked me to help her to die. I explained that I couldn't. She asked me if doctors could help her. I explained that they couldn't either. Then she said "Make them see sense". Words that stuck with me and caused me to campaign for assisted dying.

I joined Dignity in Dying, as several on this thread have recommended. HOWEVER the Dignity in Dying campaign is strictly limited to helping those who are within 6 months of dying and who have mental capacity. Dementia sufferers would normally be excluded from this narrow category as by the time they are within 6 months of dying - which is very hard to predict - they will not have mental capacity. For that reason I moved my support to a different UK assisted dying campaign group, My Death, My Decision. MDMD has a broader assisted dying objective which DOES include those suffering from early stage dementia, before they lose mental capacity. (That criterion is used by organisations like Dignitas in Switzerland.) If you agree with this please look at the MDMD website and give your support.

Unfortunately they are usually extremely terrified and angry, trapped in a world they don't understand, as well as in pain as their body breaks down.

This. My tiny 4ft Nana who was the smartest, gentlest person turned into a violent, angry stranger. Pinched us, screamed at us, throwing hot tea at us.
The care home advised us to stop visiting as it was frustrating her and making her more angry that she didn't know who we were. We would come and check up on her from a distance.

She wouldn't have wanted to become that person. It was a relief when she finally passed. For both her and my devastated Dad who saw his Mum turn into someone else.

Alzheimer's is a cruel disease.

@trixiebelden77 Then you were lucky that he didn't develop the other side of Alzheimers. If affects everyone so differently.

unfortunately dementia and alzheimers lengthen the lives of old people.
they really do.
i've seen it many times first hand.
the poor people end up living a lot longer and often in complete misery and a lack of dignity.
i'm going to the clinic in switzerland if either get me.

My father died a good death from the same form of dementia that struck the author Terry Pratchett. A week before his death he told me to take care of myself. Then he essentially decided to let go.

I just wanted to post this because there can be better ways of dying with dementia. However, it's only fair to say that this type, (PCA) is often thought of as a different disease from Alzheimers as it is much more like the experience of dying from a series of painless strokes. It is so different that my retired GP uncle was convinced that dad didn't have dementia at all until we got a consultant in to confirm, because dad's memory and personality were intact.

If I get dementia I want to be in the 5% who get the form that dad got.

home.bt.com/lifestyle/wellbeing/9-things-you-should-know-about-the-rare-form-of-alzheimers-that-sir-terry-pratchett-had-11363967942621

Just wanted to add a hand hold and reassurance OP. In the same position with my MIL. No recognition, no quality of life, no dignity. I cared for her for 18 months before residential care became the only option. We too would like her to slip away peacefully in her sleep, the sooner the better. Nothing remains of the person she once was, despite every effort to find that spirit within. It's awful. You ARE NOT awful, you are grieving and angry and devastated, and like many others with dementia stricken relatives, you want her suffering to end. That is not something to be blamed for. All the best in these difficult times xxx

I'm going through the exact thing with my grandad who has dementia right now. He is currently really unwell in hospital with a chest infection but he's such a fighter still. Just horrible to watch and I just want him at peace so I completely understand how your feeling, then you feel guilty for wanting them to pass. It's so difficult. It's an absolute bastard of an illness, I'm angry/sad a lot but just have to keep going and doing our best for him

I sound heartless, I know I do.

No, you really don't sound heartless. It's plain for anyone to read from your post, how much she means to you.

No you aren't heartless at all and 99% of contributors agree. I'm not sure I've ever seen a vote so one sided.
hope it's not too long before she fades away.

My Mum had severe dementia and if I’d been able to put a pillow over her head I would have.

It’s only 5 years later I’m just starting to grieve properly.

There comes a time when it’s time to go. It’s testament to exactly HOW much you love her

Big hugs x

It's not heartless. My beloved grandmother died of dementia in 2014, and the best thing I could have done for her was signing her DNR.

My brother doesn't know. He would have tried to talk us (me and Dad) out of it, but she was suffering so much that it was by far the kindest thing to do.
I saw her the day before she passed (nursing home), and she was very distressed saying she'd been talking to her mum but now she'd gone. I told her she would see her again very soon, and she passed peacefully the next day.

I'd been her carer for years at that point, and she had no idea who I was. The feeling of relief when she went is something I still feel guilty about.

OP I hope my post didn't seem unsympathetic. I've been where you are and you have my heartfelt sympathies. I would just say that none of us really knows what quality of life our loved ones are experiencing. She may be happier and more content than you realise.

Try to trust your nan to know when to go.

The only advice I would give is that when it is her time, and it will become clear because she will probably refuse food and drink, make sure she receives the pain killing drugs she will need to make her comfortable at the end.

Wishing you the best

The person who voted for YABU said upthread that it had been by mistake and she had not meant that one.

For the record, if I click on the wrong one in the poll I can change my vote to the other so long as I do it before I leave Mumsnet that session. Is it not the same for everyone?

The feeling of relief when she went is something I still feel guilty about

Me too. I’m so glad I’m not the only one. 💐

@myimaginarycathasfleas I absolutely didn't take your post the wrong way - everyone has an opinion on this sort of thing. Thank you for your follow up response though, means a lot.

I know I've said it a few times now but I'm shocked at the outcome of this poll, I'm relieved I'm not alone and don't come across as cold hearted. Thank you again everyone so so much your comments and kind words truly have touched my heart.

@AskingQuestionsAllTheTime I actually did that straight away but was just afraid as I couldn't see how anyone would choose that.

I agree on the guilt. Even though my mum deteriorated over 24hrs and it was a huge shock, I felt relieved that she didn’t linger or need nursing home care. I’d got to the stage where I was trying to move and lift her and not doing well at it.

Now, I feel enormous guilt. But my friends remind me that my mum would have HATED “care” of any description and not being able to totally “do” for herself.

I've seen friends and family go over time and it's not fair on them let alone everyone around them.

I'm very pro voluntary euthanasia as long as there are massive legal checks and protections in place and punitive penalties in place for those who abuse it.

If I could have my DM's last moments again (just over a week ago) I have made them stick the bloody morphine in quicker. I will always suffer guilt that she may have experienced pain when she didn't need to.

It is a terrible disease. I was relieved when my mum finally died after months of being ill and not understanding why, or where she was, and feeling scared. You are not heartless; none of us wants our loved ones to suffer.

I name changed recently. Nothing sinister, just trivial reasons.

Just wanted to let my fellow MNetters know my grandma is now at peace. She died this morning.

Thank you for all your support. Conutine to be the beautiful, strong women you are.

Continue*

@JasonVoorhees - I am so sorry for your loss. As you say, at least she is at peace now. It in no way diminishes your grief but hopefully it’s a small comfort to you.

Take care.

No one can say you're heartless for wanting this. When they said my dad couldn't be treated for his cancer I just wanted him to die so it was over for him and us too, the waiting was awful, watching him suffer was awful, he had no quality of life, he wasnt conscious, he must have been in pain it was horrendous.

Any one who condemns you for thinking like this hasn't seen someone they love suffer like it. I loved my dad more than anything but would rather he was dead than stayed with us suffering. Your nan sounds an amazing person

May she and your all be at peace

So sorry for your loss. But at least she is now at peace.

I prey every day for my Nan to just go to sleep. I hope it not much longer.