Accepting that someone with dementia you care for is at end of life

Talking Point members share their advice for someone who is at the point of understanding and accepting that a relative or friend with dementia is at the end of life. 

We asked members of Talking Point for their advice to a person facing the fact that someone is now at the end of their life.

Talking Point is a helpful community that’s free and open 24/7, where anyone who’s affected by dementia can get valuable support online.

Pork Pie lady says,

‘If they are able to understand and you can do it without causing upset, make sure you are clear on what they want – where do they want to die (if it is possible to give a choice), who they would want with them, what arrangements for the funeral. 

‘Don’t try to be strong or stop the tears. Times of not coping, not being able to be strong for others and getting very upset are all part of the natural process of grief which starts at the point of knowing someone is dying not when they are gone. 

‘Please be kind to yourself and make sure you make time and space to process all the negative things you are experiencing. It will be very painful but much better overall for your mental health.’ 

Frank24 says,

‘The unpredictable nature of the end of life is very hard to cope with. I think I did go a bit mad. It’s torture. It’s also very difficult to accept the end after a long illness.

‘Everything you’re feeling is normal.’ 

canary says,

‘This waiting is unbelievably hard. When Mum was at this stage, I took her favourite childhood books (Alice in Wonderland and Winnie the Pooh) and also a book of poetry that I knew she liked and read to her. Sometimes she would join in a few words.

‘I would also take my knitting in with me and when she slept, play her favourite music while I knitted.’ 

Lynmax says,

‘I had dreaded such an experience, the thought of watching someone die frightened me but it was such a calm time, just us, carers quietly popping in to make sure we were OK.

‘They must have known it was going to be quick as they waited outside the room, so we were not alone but had privacy and their support.’ 

LynneMcV says,

‘I have no real advice but offer my complete understanding of the strain this last stage causes – never quite knowing when the end will come. In our case, I was told my husband had two hours but it turned out to be five days.

‘It was important for me to be with him until the very end, but it was way too much strain for my daughter to cope with after she had said her initial goodbyes on day one. She stayed away but supported me and honoured her father in other ways.

‘There was absolutely nothing wrong in that – her dad wouldn't have wanted her sitting tense by his bedside day after day, agonising over when the end might come. A goodbye on day five from her would have been no more heartfelt than the goodbye she made on day one.’ 

What would you say to someone anxious about an upcoming event because of how dementia affects a family member’s behaviour?

Email us at [email protected] by the end of 6 November 2022 so we can share it in our next magazine.

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I can sympathize with the woman who basically lost her mom after 5 days of hospital miscare. My mom after a week in a rehab unit wasn’t able to walk and never walked again though she walked through the door on day one. Then she just gave up. Somewhere in her dementia she came up with the idea that she would stop eating to let go so for 6 weeks I watched as she starved herself to death. She also had violent episodes with her dementia. My husband was diagnosed with Alzheimer’s the week my mon died so now I am in the 8th year of that. Very draining emotionally and physically after 18 years of caretaking… Reading others’s stories help. I don’t feel so alone in this.
my mum is in last stages she hasn’t got out of bed since before christmas. unusually today my 2 daughters my stepson my niece and great niece along with my sister and brother was all at mums together , she slept the whole time and i didn’t think anything of it but she still is t very responsive and i can’t help but think us all being there together it’s gonna be bad news and i don’t know how i will ever cope without my mum
It has been really helpful to read other peoples experience of final stage dementia. It is so hard watching my mother fade away so quickly.. she was in final stage before she had a stroke three weeks ago. I see the deterioration every time I visit her now. Today I have had a call to see that she is pouching her food now. I’m hoping, for mums sake, that this stage doesn’t last much longer. I’m finding it difficult to sleep, constantly expecting a phone call. She’s fought against her condition for many years, always been fiercely independent. It’s so cruel for her to go this way.
I'm sitting here crying after reading Diane's story about her mom,I'm going through the same thing with my sweet mom,she's always been independent,hard working her entire life, she lost her husband (my bonus Dad)3 yrs ago of covid,he had Alzheimer's,I don't think she even remembers him now, she's 88,has end of life dementia with all of the heartbreaking symptoms,I'm her only daughter and I'm having a hard time with this, she still remembers me and when she sees me she has the biggest smile, which I cherish ♥️I don't want her to have any kind of pain or discomfort, which we have been blessed she's not had much, but now getting infections often,I know in my heart she will be with God in heaven, but losing her is more than I can even imagine, but I know God will give me guidance and strength when he can her home 🙏
First, thank you for sharing your experience. I have been my moms primary caregiver for 7 months now and I have been experiencing unexplainable feelings especially lately due to the rapid decrease in mom's health. I wouldn't wish these feelings for anyone. You are so strong! I am the daughter in law and it's so many things I feel but I am shy about discussing with my husband because if I feel the way I feel, I can only imagine how hard it is for my husband because it is his MOTHER. I have a therapist but nowadays it just doesn't seem to be enough. Nothing is enough really. She is and always has been such a blessing to me and so many others as she was a Gifted and Talented teacher for many many years. She was so smart, sassy, strong and outgoing and now that she is so fragile and weak tears me to the core. Sorry to go on and on about my mom but finding this blog was a much needed release. I will pray for peace for every and anyone impacted by this horrible illness. God Bless
I'm at my mother's bedside as I write this, trying to find some kind of something.. I've been our ma's only caregiver for the past 6 plus years..constant back and fourth hospital trips for the same thing over and over, dam utis!!! They wouldn't show in her urine from 10 to 14 plus days after the symptoms and signs and "testing' so by the time it did, she was so aggressive, violent, and irritated more times then not I had to call for an ambulance because she was so violent with me.. mind you, NEVER EVER aggressive nor violent before dementia!!! The last hospital visit was so traumatic as they completely messed up her meds, and one nurse even gave her meds she wasn't even prescribed! Ma has a sensitivity to meds in general and once acclimated and can tolerate, any addition or change messes with her. Basically after 4 years of work, down the tubes in 5 days of a hospital visit! Hospice was spoken of and I though maybe but wanted to wait and just meet. 1 day after our meeting, ma falls face first from a standing position and breaks her nose, has a small brain bleed, and now we find out her kidneys are failing so brought her home, were done with aggressive treatments and as I sit by her bed, the guilt I feel is unbearable! I found that threw great pain and heartbreak, I foubd pure joy and a love for our mother I never knew! She's been my mother, my best friend, my confidant and my hero my ENTIRE life! Raised a family of 3, plus our pops of 50 plus years, help our father build the family archery businesses while running a home and working 2 jobs!! Always had dinner every night for us kids and for when pops got home from work...she's so unbelievably amazing if I'm 1/3 of the women and person she is I'm blessed!! How do you say goodbye to the one who gave you love, and support and non-judgmental when everyone else wouldn't? How do ya say goodbye to the one so selfless she would rather go without then see anyone person suffer? My eye color, my hair color, my laugh was given to me by her!! I made a decision after watching this beautiful person work all those years scrimp, save, 7 days a week year after year just to watch what our father and her worked for dissappear over and over that the suffering stops, didn't care what my siblings thought or felt, they both have had little to do with being her advocate, the only thing I'm able to do is bring her home, where's she's lived for almost 50 years, where our father wanted her to be taken care of before he passed 7 years ago and have some kind of quality, dignity and grace for the remainder of her life! I told her she won't be alone as she's feared that since the love of her life, the only man she's every know passed after a long fight with cold, which she was there until his last breath, right here in this room, where I sit next to her bedside. She was the last thing on this earth he seen before he went home to our maker!! I made a promise 3 days before our pops passed. He asked if I would make sure the love of his life, our mother, was taken care of when he was gone, said I'd be the only one that could do the job ..well pops, here I sit now, 8 years your departure, watching your love getting ready to come be with ya.. I hope I did the job I've promised, and I hope ya put in a good word with the big man upstairs cuz I could with and threw his grace, use some strength, guidance and some kind of understanding right now cuz I sure do feel lost, alone, and just sorry!!
Thank you for all the info. It is really helpful