vascular dementia

[vickimoss]

Hi everyone, I'm new to talking point. I am 37 and have a teenage boy. Mum lives with us too as I have been caring for her at home now for four years.

She is in the end stages of vascular dementia. A week ago she was admitted to hospital with pneumonia-Amazingly, she has pulled through.

However, today I have been told that her swallowing reflexes have gone. I am devastated.

I know my mum is very close to the end now and I wish I had come across this web site earlier, but I feel I can offer support to others in the same situation

 

[Mameeskye]

Hi Vicki


and welcome.

My Mum had vascular dementia too. Like your Mum she recovered from illnesses when it was not expected. She was having multiple TIA's in the last 6 months and we watched her swallowing reflex slowly go. She used to forget that there was food there and sometimes she would appear to rememebr for a while and then she would lose it again.

I found this site a great support to me in the last few months of Mum's life and since. And like you I found that the mutual support helps me through what can be awful times.

Wishing you courage and strength

Mameeskye

 

[Helen33]

Hello Vicki

I also would like to welcome you to Talking Point and hope that this site is helpful and supportive to you as well as being grateful for any contributions you can offer to fellow carers.

It was amazing to read that your mum pulled through the pneumonia but not unscathed sadly. Is your mum still in hospital or has she returned home?

Although my husband has a different dementia and is at a different stage, I feel we all have a common bond when caring for someone with dementia. I look forward to seeing you around the site.

Love

 

[Grannie G]

Hello Vicki

I wish I had come across this web site earlier,

So do I. You would have had so much support.

Anyway, better late than never. Welcome to Talking Point [TP].

I wish you the strength to see your mother through the final stages.

With love

 

[vickimoss]

Thankyou for your kind welcoming words. Mum still in hospital. Spoke to the Doctor yesterday, she is on the Liverpool Care pathway, so hoping to fast track her to getting her home. Because it is the Doctors and nurses telling me that she has lost the swallowing reflex and it has not happened at home, in the back of my mind, I am thinking, I'll get her to eat and drink! They took her off the drip yesterday, I am going to see her in a few mins-I am struggling to understand how it is in mums best interests to let her starve to death!

 

[botanico]

Hi

I have just read your posting, so welcome. My mum has Vascular Dementia and I have just noticed she is dribbling a lot (the last couple of weeks) and when I am giving her a cup of tea she has to take it slowly or she coughs. I am worried her swallowing reflex is going but nothing has been said by staff at the care home. She is also sleeping a lot now so spending most of the time in bed or she just starts to lean forward. It's a difficult time, hard to bear at times.

 

[Sandy]

Hi vickimoss,

This must be a very difficult time and I can 'hear' in your posts a mixture of realism (your mother is in the end-stages of VAD) and optimism (if you can get her home things will improve).

I expect the hospital has explained the connection between swallowing reflexes and pneumonia? Often once the swallowing reflex starts to go, it is more likely that small amounts of food or drink will 'go down the wrong way'. This makes increases the likelihood of pneumonia - it's often called aspiration pneumonia, due to the aspiration of food.

The withdrawal of the drip must seem like an ominous step. Can I just draw your attention to the Alzheimer's Society's position paper on palliative care? :

http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200167&documentID=428

The relevant section says:

Artificial hydration and nutrition

The Society believes that it is inappropriate for a person with advanced dementia to be given artificial hydration and nutrition for the sole purpose of prolonging life. Treatment should be given to maximise the quality of life and comfort of a person with dementia in line with the General Medical Council's guidelines on withholding and withdrawing life-prolonging treatment (2007).

The Society has serious concerns about the frequency with which people in the terminal stages of dementia are artificially fed and hydrated. When people in the late stages of dementia experience great difficulty with swallowing, most people accept that this is part of the dying process and that the most appropriate response is palliative care. The goal of dementia care at this stage is therefore one of comfort and emotional wellbeing - not of prolonging life. The best way to alleviate the pain and distress of a person in the final stages of dementia is through one-to-one nursing. Sips of water of moistening the person's mouth provide a more appropriate and less invasive alternative to artificial hydration.

This may not make things much easier, but it might help to see that the hospital is acting on the best advice possible.

Take care,

Sandy

 

[Lucy O]

thickener

Hi Vicki
Hope that you have managed to get your mother home by now. Re the choking - I wondered whether you had been offered Nutilis to thicken your mother's drinks etc. It looks revolting - especially when it is mixed with tea and coffee! - but makes the drinks into a soupy consistency. The Speech Therapist should be able to tell you how much to put it in etc. My mother had Vascular Dementia - she died in July - and survived at least another year after her swallowing reflex began to go because her drinks were thickened and we liquidised all her food.
Good Luck in getting her home - it really is possible for someone with dementia to die at home - we managed it.
Lucy

 

[Annoula]

i am a new member here and my mother has vascular dementia. it is no official diagnosed but it's the most possible type.
she is pretty well and very functioning, maybe it's early stages still.

i didn't know that swallowing reflexes start to decline and eventually get lost.
that was new information for me.

i don't know what to say. i am happy i know it now, or am i more troubled that this will eventually happen to my mum...

thanx for the info anyway.

and i wish your mum and yourself the best.

 

[Grannie G]

Hello Annoula

i don't know what to say. i am happy i know it now, or am i more troubled that this will eventually happen to my mum...

Many of us on Talking Point [TP] try to live from day to day.

It is no bad thing to know what the eventual outcome will be but everyone goes through the progression at their own pace, in their own time.

If your mother does have vascular dementia, he moods will probably change from day to day. I can only suggest you make the most of the good times.

Please keep posting on TP. There is a lot of support here from people who understand .

Love xx

 

[susannewolf]

Another new member

I'm also new to this site. My mother is 74 and has been in a care home for about a year since the death of my father. Physically she's very fit, needs no help to go to the toilet or eat, but mentally she's declining. We've not had a formal diagnosis but vascular dementia seems most likely as she's lost a lot of her sight. My problem is that my mother can not remember that my father has died. She spends all day wandering around asking if anyone has seen him. She can't believe that after 50 years of marriage he's gone off and left her. This is making her very sad and upset. The carers don't seem to know how to deal with it other than saying 'I haven't seen him'. Has anyone else come across this issue and how did you deal with it? Any advice gratefully received!


Susanne