Vascular dementia- end stage after weak swallowing, but lucid

[Londonboy]

Hi, my mum has vascular D, bed bound, diabetes type 2, arthritis. Double incontinence.

had a cough, over Xmas that did not get better. Second call to GP led to her being taken into hospital for chest Infection. She has been nil by mouth and on a drip for antibiotics since Wednesday 2nd January, as her cough has not cleared up and SALT team say her swallow is weakweak and it is dangerous to feed her. Assertive consultant has said they won't want to use a feeding tube.

She is still coughing without eating or drinking.

She coughs every time she drinks anything. But she is so alert, sometimes confused, yes, but she remembers her old friends, asks the nurses how they are, complains about the pain of the canula, says she is hungry, etc. She was a nurse and loves looking after people. The doctors review is tomorrow, I am Broken in two over her.

If she were in a vegetative state, I could accept that she was in the final stage, but her pretty good mental state and warm character that still shines makes me want to hope she will hang on.

Does anyone have this experience?

How long could she live for?

I will miss her like anything, and the only thing that keeps her going is me, she always thanks me for everything and that she is sorry for being a trouble. She still worries about me because I am single and have not settled down!

I am the only son, have been trying to care for her while working full time, twodays a week at home. Carers have been. Coming 4 times a day.

This website is a gem, I wish everyone hope and strength in this struggle.

 

[canary]

Hello @Londonboy and welcome to Talking Point.

My mum lost her swallow after she fell and broke her hip and then had an op to repair it. She would not eat or drink anything after this so she was taken back into hospital, rehydrated, but no other treatment given and was discovered to have lost her swallow. She was offered food and drink, but was unable to swallow it, so she was transferred back to her care home and put on palliative care.

At this stage mum was still getting up and going into the lounge. She got weaker as the days went past, but I have a photo of her after 14 days with no food or fluid sitting at the table with her great-grandson (7 months old) and they are both banging teaspoons on the table and laughing. No-one looking at it would know that she was dying, but she was was. The following day she went into a semi-coma (although she would still respond at times), then her breathing changed, she was put on a syringe driver and after 17 days with no food or fluid she passed away.

When someone dies of dementia all their organs start slowly shutting down and it can take a long time. They do not need food or fluid as their body can no longer process it, so they do not starve to death - they are already dying. Not everyone lasts as long as my mum - she was a tough old bird - but it can go on for longer than you would have thought.

 

[Londonboy]

Thanks so much for your reply, canary. I cannot sleep as am in pre-grief. Also the heating has packed in and I am freezing cold. Need to call a plumber asap to get the flat ready for if and when mum comes back.

How old was your mum when she died? I forgot to say mine is 84. But she looks much younger, and has a cheeky smile that everyone falls for.

I know I am lucky that I had her for so long, but the decline has been tough. She's been bedbound for a year, legs are now bent and stuck in foetal position.

I knew this time would come, but thought that the mind would go before the body with dementia. I just want to make her as happy and loved as possible without any worries about me. She raised me on her own, dad left when I was a baby, so mum and I are really close. I know she is worried about me (for her I am still her little boy) and wants to give as little trouble as possible.

Being a nurse, she is used to looking after the sick and dying, I think she half- knows what is happening to her, but she seems so content when I or loved ones are with her. I just don't get how she can be dying. Its not like in the movies where you know the last breath is coming.

She also loved food and was a great cook, so her asking for food and not being able to have any seems like a wicked punishment. What can I do?

 

[canary]

No, its not like in the movies at all @Londonboy

What can I do?

You can sit with her. Talk to her, read her books that she loved as a child, say the important things - thank you, I love you, I forgive you, please forgive me. Tell her it is OK to go, that you will be OK.
Play her favourite music, comb her hair. The nurses can get you some little brushes to moisten her mouth. As her skin dries putting moisturiser on her face and salve on her lips will help make her comfortable.

Mum was 92 when she died, but seemed so much younger. The decline is indeed tough and you are now into the last long vigil.

 

[AliceA]

I am so sorry for you, Canary is right. Tell her you love her, assure her you are all right, she brought you up well.
Love is really the only thing that matters in life. X

 

[Londonboy]

Well, now the doctors have agreed to a 'toward plan ' where we accept the risk that my mum can eat some pureed food but some may be ingested into the lungs and cause another infection but she is not eating the food - it is pretty revolting, to be fair. She is coughing, but doctors say it is a good reflex to have. Hopefully the infection will clear for the time being and she can come home later this week.

They will arrange a palliative care package in the community.

I have been calling friends and relatives not seen in a long time and my mum remembers most of them. She said something very moving yesterday ' I am very depressed because I am the way I am'.

She is tiny now, say about 30-40 kg, but she is still strong-willed, her bp is not bad and her SATs are very high. her hallucinations have become more frequent and vivid, I notice. This may be because she is not taking her regular meds for diabetes, blood pressure etc, which pretty much kept her stoned for much of the day.

Does this ring true with anyone else?

Thanks to all for your advice and support.

 

[mumsgone]

morning londonboy,
so sorry to hear what you are going through and as the others have said all you can do is be there for your mum as much as possible. my mum died at the age of 80 with vas dem she also had type 2 diabetes but ultimately lost her swallow and could no longer eat or drink. you could put a bit of juice or squash on a mouth swab just to give her a taste of something. It took my mum 9 days before she finally gave up the fight for life and towards she end i insisted she was given pain relief patches as she was holding her head all the time as if it hurt. this calmed her and i believe helped her find a peaceful release. you know you have done all that you can and when your mum goes it will be bitter sweet but you will in time be able to focus on all the good times you spent with her sending a big hug xx

 

[jojo2018]

I'm so sorry to hear you are going through this awful time, and so much of what you say resonates with what my OH is going through with his mum right now. He's an only child and his mum is all the family he has left, and although there are so many illnesses affecting her, and she is confused and can't speak clearly, there are still moments where she is so true to herself that he can't accept that she's close to the end (we've been told weeks but no-one is really sure). She tells the nurses they are magic and when her pain is relieved she says it's heaven.

What I've told him, and I hope it helps, is that for a parent - knowing their child is there, loves them, and has their life ahead of them - must be the greatest comfort and allow them to end their own life peacefully. Telling her you're going to be alright, that she doesn't have to worry, and that you love her, are such valuable gifts you can give.

This is a heartbreaking time and my heart goes out to you xxx