Last stages How do I cope ?

[cardsculpture]

I don't really know where to start because I've never done this before but I really need to talk to people who know what I'm going through, I feel as if no-one else can understand me so I was so glad when I found this forum.
My Dad who is 85 now started with dementia 6 years ago after his first stroke.My young sister had died and I think it was the shock. It was xmas eve and the family were called to hospital as the doctors said he would'nt last through the night, well he did and eventually came home but he was'nt the man he was before. He had a second stroke after Mum died and his 3rd after my brother died 2 years ago. none of his strokes caused any physical side affects but certainly did cause his dementia. eventually I had to put Dad in a nursing home for his own safety but even though I knew I had no choice I have always felt guilty about it.
Dad had to be moved to a special care home because his dementia was so severe and a normal care home could'nt cope with him. Dad is constantly tormented with his dementia because he can't sit still and as soon as he sits he has to get up again, all he says is ( help me ) and he cries constantly. He is no longer able to have a conversation, he's lost 4 stone and won't eat. It breaks my heart to see my big strong Dad like this and I ask God to put him out of his misery . I spoke to Dads doctor and he said Dad is coming to the end of his dementia but I don't really know what that means, what happens next ! is my Dad getting ready to die ! why can't they tell me what to expect next because if my Dad is going to leave me I want to spend as much time with him as I can, Dad is all I have left of my family. is there anyone out there who can tell me exactly what the doctors mean, if there is then can you help me !
Thank you for taking the time to read my rambling.

 

[jeany123]

Hello cardsculpture and welcome to Talking Point, I am sorry to hear about your dad it must be very worrying for you, You have come to the right place for advice and support and I am sure there will be someone to reply to you when there are a few more people online ,in the morning, who have been or are in a similar situation to you,

Best wishes Jeany xx

 

[grobertson62]

Hi
I am sorry i dont have the answer. I never understood the stages of dementia.
I would say pin the doctor down and ask him or her to clarify.
Does the home have a nurse? Some one in charge? They may be able to answer for you.
I know how distressing all this can be having all the questions and no answers.
Sending you a hug in the mean time.
Gill

 

[FifiMo]

You might find this link helpful. http://dying.about.com/od/neurological/f/What-Should-I-Expect-When-Dying-From-Dementia.htm

To be fair to the doctor, whilst there are common threads amongst some dementia sufferers, it is very much a personal journey in terms of how symptoms develop, if they even develop at all. One of the major indicators may be your dad's problems with eating and the fact that he has lost so much weight. Losing weight means not enough calories being consumed and whilst the body can burn up its reserves is puts strain on all the organs because they are not getting proper nutrition. The rate at which the reserves get used up will be quicker if someone is mobile as opposed to someone who is bed ridden. Ultimately not eating is not compatible with life. But what does that mean? Some people can exist on very little for a considerable time others succumb quite rapidly. This makes it nigh on impossible to predict how long someone might live.

In my mother's case (if you want an indication of what can happen at the end of the dementia journey) she was doing well and had been fairly stable for a while. Like your dad she too had lost weight but the care home were very good in feeding her with high calorie foods to compensate a little for the small portions she was now eating. The other residents were all ticking along fine too until one of the relatives who visited every day turned up with a stinking cold! Very quickly after that visit ALL the residents were ill. In talking to the staff at the home we found out that the visitor did not just have a cold but was at the onset of gastric flu! In my mother's case we got a phone call to say that she was very poorly so my two sisters and I headed over there immediately as you do! We asked if the home was ok with us visiting but if the truth be known they were struggling to cope with everyone being ill so they welcomed some extra pairs of hands. When we saw mum we were shocked at the deterioration in her. On our first visit we stayed late into the night and she slept the whole time apart from us waking her to get fluids into her and the staff changing her pad etc. we asked if she was hungry and it was clear she couldn't be bothered. Only thing that got any interest from her was the mention of ice cream, so off we went looking for diabetic ice cream! When the doctor came in and examined her we followed him out to ask why she was so poorly and we were shocked when he told us that she was dying!! We said so its not just the gastric flu and that she will recover? He told us it was just that but that in my mother's case she had no reserves to fight it and that it would be a miracle if she was still alive in a month's time. It was a difficult time not knowing what to do for the best. Do we let her be, sleeping all the time or do we encourage her to eat and drink? The Dr said we should never stop offering her food and drinks but we should respect her wishes if she said no. So, we camped out at the home and being a solution driven kind of family we turned up every day with selections of things to tempt her with. She had a visit from the Speech and Linguistic therapist (SALT) who was really supportive and told us her swallowing was now affected and so only puréed food and to ignore the home trying to follow the diabetic route. They would do this for legal reasons but the SALT said, let her have whatever she wants. So out went the diabetic ice cream and in came the full fat sweet version. By now she was hallucinating and would frighten the life out of us when she would sit bolt upright and reach out trying to catch things. This and the fact that every time her breathing changed we thought that the end had come! This vigil became our routine. We left most nights at about 1am and came back in around 7am but if she was having a bad day then we would stay right through. We did this for nearly 3 weeks. My sister had children that she hadn't seen during this time and I needed to sort some things for work so we went home at the weekend. No sooner were we home when we got a phone call to say that there was an agency nurse on duty who didn't know mum and that she thought something wasn't right and had phoned an ambulance despite us having said no hospitals. So with a bag of soaking wet washing off I went back up there. The hospital thought she had had a stroke and said they would do another scan to confirm it. We told them not to bother. As bad as she had been in the home and all the times we had jumped up thinking she was gone, it showed how naive we were. This time there was absolutely no doubt that the end was nigh. Even then, it wasn't a quick process but all the signs that death was imminent appeared. The pneumonia set in. The cheyne stokes breathing. The mottling of her skin. It was very peaceful despite the horrendous noise of her breathing.

As you can see nothing went as we predicted and in the end you could say she died from something other than dementia that killed her but the death certificate said otherwise,

Hope this helps,

Fiona

 

[Izzy]

Good morning and welcome to TP. I'm so sorry to read about your dad. Your family has had so much to cope with. As others have said it's hard to say what to expect. I remember being really surprised when I was told my mum was 'slipping away'. I hadn't even considered it was the end. I think you can do little else but play it by ear and do what you feel is right for both yourself and your dad. Take care. X

 

[lilysmybabypup]

How my heart aches for you, to be in such a situation and feel lost. I can't believe the grief you've already had to bear in your family, it is incomprehensible.
I understand how confused you're feeling, when Dad was in the end stages I just wanted someone to hold my hand and tell me when he would go, but it just can't be done. What you can do is request a medical conference with the clinical team from the home, and the dr. Have your questions and concerns ready and let them know how you're feeling. If you really want to hear the truth and feel you will cope, ask them to be completely honest with you because it is actually worse to worry and wonder than feel prepared and informed.
If your dad is indeed nearing the end, then you need to discuss his management, keeping him comfortable, calm and relaxed, without actually seeking to prolong the way he's existing right now. Sorry if I sound tactless and brutal but I've recently lost my dad and I know the heartache of not wanting to let go while still knowing they need a release. It's the most painful emotion.
I think you could discuss what medications he's on, is he on an anti-depressant to help with the tears and anguish? Is he in any pain which can sometimes cause the restlessness? Perhaps he could be given some analgesics, such as paracetamol. Ask every question you can and don't think any of them are silly questions, there are no silly questions.
The dr should not say your dad is near the end without discussing a care plan for such a situation. Finally, a very wise person who was very experienced in dementia care told me to ask myself, what could I live with after dad was gone? I had to make choices I believed were not only the best for his welfare but also what I would feel satisfied about after he was gone. Do you understand? If he were to pass and you were left saying, if only I had spent more time with him, or, if only I had known more. Sorry, this is very confronting, but that's what this end of life is like, confronting.
Sometimes a person can be "near the end" for days, months or even a year or more, you need to be made aware of his situation because you can't start spending every waking moment with him for months on end, it's exhausting, I know, I did it for 8 weeks non-stop and my world was unravelling, but I feel I gave him everything I could. However, as I said, I could not have kept it up for much longer, so it's very important to get the most accurate information so you know how to plan.

Please keep us posted, and I hope I haven't made you feel worse, it's a terrible burden at times, knowing how much to say to someone so they feel they've had some help without overwhelming them and making them more fearful.
Take care,
Stephanie, xxx