Questions about death and AZ dementia

[nbfb]

Hello TP's

Some of you may recall my mother in law was in a fast downward spiral and was admitted to an assessment unit about ten days ago. Since then she has suffered repeated falls with extensive bruising, culminating in a broken hip yesterday.
It is quite shocking when I think of it how events have changed so fast. I think we are looking at the end, she has another UTI and is now seeing all her favourite dead people. It was an eyeopener for me to spend last night at the hospital with her, all night long the constant movement: I have such a great repect for father-in-law, I really don't know how he has managed for so long. We wait and see for a few more days whether surgical intervention is required. We hope not, I don't think she will survive it and they are reluctant to intervene given her condition and general health. I know it is stupid for me to fret over, but she won't wear her dentures anymore which makes her look like someone else. I am struggling to see the real person behind this strange shrunken mask.

I don't think that we talk about death enough in our culture - I would like to ask a few questions relating to death from Alzheimers if nobody objects? I know that some may find it taboo, but bear with me please.

What happens next? When food and drink are limited (from patient choice) and pain medication is given, does it take long? She is now off the drip. She is already skin and bones with not an ounce of fat on her. I suppose that being immobile in bed, the risk of pneumonia will set in? Do hospital doctors tell the truth or wrap it up in kind words and false hope? Or does a six stone woman with a broken hip and advanced dementia get "better" and return to the asessment unit?

I would wish her a good death; a peaceful end from the constant hallucinations, delusions and tiresome movements. Is this too much to ask? I think not. How do we ensure it? I know not how.

If anyone is willing to share what I understand could be painful memories then I would be grateful. I apologise if I have asked the unaswerable.

nbfb

 

[Cate]

As others may find it very upsetting, I will PM you.

xxxx

 

[Vicky Anne]

On Tuesday I received a telephone call from the care home "we have had the doctor to your Mum, there is nothing more he can do, he suggests you come and sit with her". I phoned my sister and brother and we all rushed over to be with her - I travelled 30 miles and my sister some 200+. Mum was agitated when I got there and we had to wet her lips but not give her any drinks for fear of her choking. Her chest was wheezing and as she can no longer talk or move, I watched her eyes, held her hand and finally calmed her down. Mum slept, my sister and brother arrived. Mum still slept. We anticipated staying the night at the home but went to stay with friends.
On Wednesday Mum was much brighter, looking around, sipping drinks and not wheezing. By Wednesday afternoon we all decided we could go back home as Mum was once again stable.

Mum has had pneumonia several times, is, as you say of your sister in law, all skin and bone and yet she is still with us.

The hospital sent her home last time with "end of life medication". I had never heard of it before but the care home still have it. I don't even know what it is but I think it is morphine, reminds me I must ask.

It would be very tidy if we had an answer to how long, but I have come to the conclusion that nobody does actually know.

Hope this helps.

 

[jenniferpa]

Although this is a US site I think it has a lot of helpful information about what is an inevitable part of being alive.

http://endoflifecare.tripod.com/Caregiving/id5.html

P.S. I wish I could give you the benefit of my personal experience but sadly, my mother died before I could get there (in what appeared to be a conscious decision on her part.) However, I do think it is a perfectly acceptable thing to discuss on this forum. It's something we all come to eventually, and while I understand that some people may not wish to read it, your title is so accurate that I don't think anyone would stumble into this thread without being prepared for the content. Having said that, though, I understand that for some people this a private issue.

 

[alfjess]

Hi nbfb

Do you mean your MIL is on the Liverpool Care Pathway?
Sorry if I have it wrong.

Dad was on the above and although the carers in the home did their best to feed and hydrate him, finally, he was just kept comfortable and he slept away

Take care
Alfjess

 

[nbfb]

Thank you Jennifer for the link and Alfjess for the comment.
I will check them out. There is no gold standard framework for palliative care in place in Wales - it is all rather hit and miss. The Liverpool Care Pathway from my brief internet search looks like something that is not currently available to us.

I think I am off to bed - it has been a long 48 hours and I am rather overtired.

nbfb

 

[jenniferpa]

What you have in Wales is the All Wales Integrated Care Pathway for the Last Days of Life The ICP as it is also known is not, it seems, in place all over Wales even though the following was published in 2006 to encourage the use of it.

http://www.wales.nhs.uk/sites3/docmetadata.cfm?orgid=362&id=60838

 

[Bookworm]

Hello nbfb. Yes this is a sensitive issue and one that you have raised in an extremely sensitive way. Others have posted very admirably. So - there are no answers to your individual predicament - but there are people who care and will seek to make your loved one comfy at every moment. There will hopefully be people with you face to face who can guide you through this precious time.

In my experience people usually seem to be very unaware towards the end and seems to be comfortable. That is why the LCP is so useful and things like it - it would be wrong to be pricking fingers for blood sugar so near the end or taking blood to check for anaemia. The essence of care is symptom relief e.g. ensuring chestiness is not a difficulty.

I wish I could think of wise words tonight but feel what i would wish to say would be face to face and so I'll leave it here.

 

[Skye]

Hi nbfb

I think the LCP may well be followed, although it is not called that in your area. Most health boards have their own version, based on LCP, but called something else.

My mum refused to eat or drink following a stroke, and repeatedly pulled out her naso-gastric tube. She made it clear (as she had repeatedly done in the past) that she did not want to survive if she was incapacitated.

I had to make the decision not to have a PEG inserted, because I knew that would be against her wishes.

She survived 7 weeks without food, though she was kept hydrated by a drip. She did eventually get pneumonia, and that was very difficult to watch, as essentially she was drowning.

She was given morphine, and the dosage was increased as death approached. The doctors can however only administer the highest doses when the patient to control pain, so you have to watch out for this, and ask for an increase if you think it is necessary.

My mum only survived three days after pneumonia deveoped.

I'm sorry if this has upset anyone. I have to stress that not all deaths are like this, people with dementia may die of many other causes, and not all are painful.

After seven weeks of struggle, my mum eventually slipped away peacefully, her pain controlled by morphine.

Of course I still wonder if I made the right decision, I always will. But I knew what my mum wanted, and I had to go by that.

nbfb, I think you should talk to your mum's doctor and ask about the likely end. He/she will be honest, and will most likely be able to give you an accurate prognosis.

I do hope your for both your sakes your mum has a peaceful end.

Love,

 

[Mameeskye]

Hi

It is a hard time and one that my Mother went through a few times before finally succumbing and surprised us all on a few occasions when we thought death was near by waking up hungry and thirsty and going on, even walking again after 6 weeks in bed.

She had her "Angels" with her the final time for a good six months before she made up her mind to leave. Mostly they kept her company and she would talk to them for hours, just occasionally coming back to us for the odd word.

She could not be roused one morning and was sleeping deeply. (She had VAD and had had a more severe one) there had been no response and we started to sit with her. This was the Wed am. She was peacefull all day and the staff advised us to go home at night. She was on no medication as there was no need she was totally at peace.

The next day her eyes opened and closed but she was totally relaxed.

ON Friday her GP prescribed morpine and fentanyl patches but an hour later, before they arrived her breathing altered slightly..within a couple of hours she ahd drifted away to join her angels.

She was completely at peace and totally relaxed. She was not fightened, she was comfortable and she was calm.It was sad but everything was under her control and she died as she lived, in her own way, without medication. If you could have such a thing she had a "good" death.

((((((((((((((((hugs))))))))))))))))

If you feel up to it then there are threads about this stage in the LIving after dementia section and you may find these helpful.

COurage through the time ahead.

Love

Mameeskye

 

[Lynne]

Please follow this link to thread about my Mum's decline & death last year. http://forum.alzheimers.org.uk/showthread.php?t=12032 "Mum won't Eat ..."
As well as being a narrative from my own point of view, this thread is full of a HUGE amount of helpful suggestions, support & kindness from TP contributors who responded.

I hope you find some of it helpful & a comfort. Death is a part of life for all of us, and for myself NOW (in my right mind, )
I would prefer a merciful, pain-free death to the later stages of Alzheimer's, if I could make that decision.

Reference dentures, when a person loses a lot of weight their face shape changes such that ill-fitting dentures may cause mouth ulcers and great pain.