Signs that end of life is approaching

[KurriKurri]

in late stage alzheimers patients

In recent weeks my DF has lost the use of his legs, and is having problems swallowing. He had a minor stroke recently, - which put him in hospital, and I attributed his symptoms to this. But today my mother phoned me to say his appetite is poor, and he is sleeping very deeply for long periods of time during the day, such that he is hard to wake. Although he can be restless and wakeful at night according to the nurses.

I wondered if anyone had any experiences in this area. I feel as if I need to know the truth, and I can't ask my mother

Well my Nana who had Alzheimers suffered periods of those symptoms you have described and we all thought the worst...then the next week she was sitting up in bed eating Shepherds Pie

She definitely had her good spells and bad spells

Thank you cyb. It's worrying seeing him deteriorate so fast, but as you say there are some better days. I'm sorry about your Nana, - its such a horrible illness.

Every time my dad has a bad spell it turns out he had a UTI :(

Lack of fluids will cause problems. Could it be this?

The saving grace with my nana at the end was that she was so far gone she didn't know what was going on. The hardest bit was the confusion and angry outbursts and inappropriate behaviour prior to all that

Yy to lack of fluids too

thanks for answering eaglewings. He has had a lot of problems with UTI's, he's on fairly strict monitoring for how much liquid he has, because he was dehydrated when he went into hospital.

But mum thinks they sometimes record when he's been 'given' a drink (he can hold a cup), rather than when he's definitely drunk his drink. So she's had a word with the doctors and they are being more vigilant now.

I'm sorry about your Dad

Oh yes cyb - we have innapropriate behaviour (trying to lift up my dress, and saying he likes my fat bottom, which could almost be funny, if it weren't so utterly unlike my Dad, who was always such a Gentleman )

He doesn't get angry, he gets very anxious. And he's scared of the hoist they use to lift him, so he panics when the nurses come in.

Hi KK, you seem to be doing such a good job with your dad and supporting your mum. It's so hard to see the decline, and other than checking as others here have said, about fluids as dehydration mimics other complications (and the prevention is such basic nursing care) I think you are doing all you can. I would be making a big fuss tbh about the fluids, my guess is that your mum is of the old school and reluctant to question staff. Could you put your concerns about his fluids in writing? The main thing is that your dad is made comfortable whether or not he will rally but fluids surely would give him the best chance, and with that there is hope. That is so hard, I know your mum is elderly and you must be so preoccupied by this, what with everything else.

Kurri

I'm sorry your Dad's condition has worsened, seems so fast (to an outsider).

My MIL certainly went into increasingly long periods of sleep before she died, and in the last week or so didn't want to drink. To be honest, she didn't eat much in the last month or so - but she did drink. The not drinking was really the main sign of the end approaching.

Even then, we took my newborn dd1 to meet her a week before she died - and she roused on hearing a baby cry (I was trying very hard to keep dd quiet, but am so glad now I failed!) and half opened her eyes. She said something that could have been 'baby' and smiled, and patted dh's hand. That was the last communication we had with her, really - from then on she was more or less asleep, then unconscious.

Like your Dad, she tended towards anxiety rather than anger - easier for the nurses, maybe just as hard for the family. But it was a very gentle end, fwiw - she slipped away in her sleep.

Thinking of you and wishing peaceful times still for your Dad, your Mum, all of you.

It is horrible, but there is a fair amount of information that is google-able. I felt terrible for looking, when my grandmother (last stage dementia) was clearly going downhill, but wanted to help my mother who after 5 years of caring for her, needed to feel that the last stages were not going to be as long drawn out and as painful as the dreadful 5 year decline, if you see what I mean.

By finding out the basic general physical symptoms (which are in no way set in stone) I was able to say to her that realistically, someone who is not drinking or eating is not going to be in that situation for very long and that some of her behaviour and physical symptoms were indicative of death being close. Some of the information was actually strangely comforting - I'd imagined terrible thirst going hand in hand with the losing of her 'swallow' but a fact sheet I found explained and reassured by placing this in the context of the natural process of the body shutting down and explained that thirst is no longer felt in the later stages of the dying process.

This all sounds gruesome and for some reason it felt wrong to be googling and symptom checking, but it helped me to make sense of what was happening and to reach an understanding and an acceptance, and also to support my mother in the final 2 weeks.

I found this website quite helpful - there's lots of information about alzheimers generally, as well as end stage alzheimers.

alzheimers.org.uk/site/scripts/documents_info.php?documentID=101

It may be that this is just a blip, a recoverable illness. I hope that I haven't upset you with the info - I hope it helps you.

Oh - yes yes to the UTI. Every time my grandmother was hospitalised it was UTI related.

The last time, she had a UTI because basically she had completely stopped drinking. At the time she was living at home with carers and they noticed PDQ. She was relatively alert - awake and aware of surroundings at least though clearly very old (93) and fed up. But very confused and no track of time IYSWIM. With previous hospitalisations she recovered. With the last, I think right from the beginning we kind of knew that she was ready.

It is a horrible illness - you're quite right. :(

thank you all for your kind thoughts and suggestions.

Drift - my mum is OK with asking a lot of questions and being insistant, but I think she worries because she can't be there all the time, only during visiting hours, - so she worries about whether he's getting enough to drink outside of those times.

The health/SS people have had a meeting and decided he can't go back home now - his nursing needs are too great, so they are waiting for a care home place where mum can be with him all day if she wishes.

Elibean - it is a comfort to know of your MIL's peaceful passing, - I feel that is the best I can wish for Dad now that the end must be getting nearer. thank you and bless you xx

Pooka - I also feel guilty or wrong for asking about these things, but like you information and understanding is the way I deal with things and accept them. I can't change what's happening, but if I can help him in anyway to be more comfortable, or more peaceful, then that is what I want to do.
Thank you for your link. - And no you haven't upset me

thank all x

Kurri there is a great (and very funny and truthful) book about Alzheimers called Keeper by Andrea Gillies

kurri if your mum wants to encourage her to speak to the person in charge about visiting out of hours. Many wards allow relatives to have "open visiting" to assist with drinks, food or if relative is confused, anxious or distressed. Awful disease

thanks for the book recommendation cyb, it looks really good, I will have a look in Waterstones tomorrow.

Good suggestion peanut, - I will pass that on to mum. She gives him his lunch (he has to have his food pureed, and be helped a lot atm) and she's also there to give him his tea - but that is all during the visiting hours. I actually think they are quite glad she goes, because he does eat very slowly, so its a time consuming job getting a meal into him.

What I find hard is that in the last month or so, his quality of life has diminished so much. He was at home with my mum and could get from one room to another with his frame, now he's in hospital and can't walk or feed himself. It's all changed quite suddenly.

Is he having the vitamin milkshakes/fruit juices/yoghurts? Im a podiatrist who works in nursing homes and a lot of patients have them, their called nutri something or other.

I have seen a lot of patients come in weak and not walking who are walking with help next time I go and eventually make good recoveries. They dont go home if they have high nursing care needs but they become more lucid.

To be honest the care home managers cant wait to get their residents back from hospitals if they have a stroke or something because they know the care isnt as high. My fil had fab care in HDU but I couldnt wait to get him home when he went on a normal ward.

When I worked in care homes, I spent 2.5yrs caring for people whose lives were slipping away. In the latter stages there was a mottled effect which started in their feet and then worked it's way up throught the legs to the trunk of the body. It looked like the veins were almost surfacing and the parts of the body affected by it were very cold as well.

In one resident, when I saw this mottled effect reaching his knees, I told the nurse that he won't be here when I came back with the tea trolley. When I got a few minutes I went into his room and checked on him. He went when I just before brought the tea trolley up in the lift.

So OP, it may help to look for that cold mottled effect in the legs. The thing is, the same effect happened in every resident who passed away while I worked there. Another sign is when the bowels start shutting down and releasing their contents while the person is unconscious and breathing shallowly. IME the fast shallow breaths stay shallow but the dying person takes longer to breathe shallowly so it seems like deep breathing IYSWIM.

The good thing is that they were all unconscious and so didn't feel a thing before slipping away. Can't get much more peaceful than that TBH.

This just my experience but I hope it gives a bit of insight as to what happens to some people when they are dying.

HTH

Hi Kurri,

One of my family relatives died from early onset alzheimers earlier this autumn. He had had a couple of years of bouts of UTI's and this made him agitated and unhappy.

In the last couple of weeks of his life, he wanted to sleep most of the time and lost all interest in food.

Strangely it was easier as he was less agitated but, of course, terrible to watch as we could see him getting weaker and I think it is human instinct to do anything to try to make someone better.

I think his swallowing reflex started to go as he was put on antibiotics as he had inhaled food. However, after a couple of days, the family decided to withdraw all treatment except for water and thankfully his passing was peaceful. It was not an easy decision though. We have had lots of guilty feelings that we could have done more but I truly think, he would of only lasted a few more days or weeks.

We were lucky, our relative was treated with great kindness and dignity in hospital. He has left an enormous hole in our family though. It is an awful, awful disease.

Thinking of you and your family xxxx

Many thanks again to everyone.

Fluffy - the nutri drinks are a good idea, I don't know if he's having them but will mention them to mum

Avenged - thank you for that information, it helps me to know these things, and it's reassuring to know the people you cared for passed peacefully.

Thanks for your good thoughts Vulgar, I'm sorry that your family have lost someone to this horrible illness, the early onset kind is especially cruel

The only other thing I'd suggest is when you get a moment to spend with your DF (especially with Alzheimers or other forms of dementia), sit with him and try going back to when you did daft things when were younger and see if he can remember the same stuff that you do. You know they remember some things because the'll generally smile at the memories .

I also worked in and EMI (Elderly Mentally Infirm) Unit and every time I asked about the resident's family, it seemed to make them smile and tell me some of the funny things about what their DC's had done or said. OK, so it was probably 30-40yrs ago, but it still made them happy to have a wee giggle about the DC's when they were kids.

Good evening OP. How are you today, and how is your DF? I hope you're looking after yourself!

hello Avenged, thank you for your replies. I am OK today - really just getting through a day at a time, I don't live very close but speak to mum every day. And get down as often as possible. She has described him as poorly at the moment.

He does get the odd flash of memory from long ago, and we show him photos which he seem to like, he recognises himself as a young man, but not more recent ones. My niece take her baby (his great grandson) in to visit and lets dad have a cuddle, which he seems to enjoy too

There always something about babies and photos of the person or their family which can produce a smile or help them enjoy life a bit more. I'd actually forgotten about the baby thing until you mentioned it, but then I haven't worked in a nursing home/EMI Unit for the best part of 10yrs now (was taking. Must be great for him to have the 4th generation from him gurgling.

You also need to take care of yourself though because you can't function or cope as well as you would if you were in good health IYSWIM.

BTW forget the (was taking, bit. I got sidetracked with talking to DH

thanks Avenged, - I will take care, bless you for your concern

Luckily the baby is one of those very placid, smiley little ones, and he doesn't mind being passed around for cuddles