Thoughts on prognosis for my father's advanced vascular dementia

[SarahR]

Hi everyone

I'm new to these forums. I've signed up to ask a question I suspect I'll get no answer to. Basically I want to know when my father is likely to die. I know that a definite prognosis for vascular dementia is a myth, but I wonder if there is anyone out there who has cared for / is caring for someone whose experience with vascular dementia mirrors my father's, and if so what your thoughts are on how much time he has left.

Dad developed vascular dementia slowly after a series of transient ischemic attacks (mini-strokes) when I was in my teens (about 14-15 years ago). The doctor didn't diagnose it properly until about 5 years ago, but he estimates Dad's dementia began to develop in earnest about 10 years ago.

Dad is 87. He also has COPD (emphysema) which isn't yet that acute but causes him to wheeze a lot and is on tiotropium and steroids for this. Last year he got his first chest infection which put him in bed for a couple of weeks and all but destroyed his motor skills, and from which he slowly recovered afterward. This year he has had two chest infections. The last one started a month ago and he has not recovered function, but has suffered an extremely rapid decline since then, perhaps from a silent stroke. He is now bedridden and cannot walk - at the moment he can't even lift his head. It seems he has forgotten how to walk or to move. He has lost an awful lot of weight due to his lack of appetite and is very thin. This week he came off antibiotics for the chest infection but has now developed an acute urine infection. He became incontinent a couple of weeks ago very suddenly - previously he's only had problems with continence on a couple of occasions, but very suddenly this changed so he is now doubly incontinent. He has some obvious difficulty in chewing and swallowing and often coughs quite a lot after drinking fluids.

He stills knows who we are most of the time but can't speak very well at all - very often he slurs all of the words in a sentence as though he is drunk, or produces half of a statement that is only a vaguely appropriate response. He gets agitated at times - he is clearly frustrated and deeply confused about what is happening and I think is starting to have vague hallucinations.

Our GP is clear that this is end stage vascular dementia, but isn't keen to offer a prognosis.

I love my father more than anything. I want to know when he will die because witnessing his suffering - which is often acute both physically and emotionally - is heartbreaking, and also so I can plan when to go home to be with him and support my mother (who is caring for him with outside assistance) full-time.

If anybody can offer any thoughts on what they would imagine his prognosis to be from their own experience, I would be very grateful.

Thank you.

 

[Billie61]

Hi SarahR
How sad that you are planning for that

I can offer no advice on timescales but wish you all the best and hope you manage to work it out.

 

[BeckyJan]

Hello Sarah and welcome to Talking Point.

It is sad to hear about your Father and I understand your desire to have a prognosis. However no one can give you one.

My husband is a few years younger than your Father but has been at end stage of Mixed Demenia for at least 3 years. He has been through umpteen phases where end of life plans have been discussed with me. I have expected the worst so many times but my husband has rallied although never back to his old self. He is bedridden, fed pureed food, doubly incontinent, loads of infections etc etc. - he does not know us. Even though he is in this state I have no idea how long it will continue.

I know I am always 'on alert' as anything could happen, a sudden attack or another serious infection.

I do sympathise with your situation and wish I could be more helpful.

Best wishes

 

[thatwoman]

Hi Sarah,

Welcome to the forum. I don't think anyone can give you a definitive answer to your question. My Dad has had Vascular Dementia for some years now, but was only diagnosed 3 years ago. He had a rapid decline in hospital 2 years ago after a bout of pneumonia. He walked into the hospital, but lost the ability to walk in the 3 months he was there. He also became doubly incontinent and lost 5 stone. He had to go into an EMI nursing home 2 years ago. During that time he has had a number of seizures and strokes and we have been told that he won't pull through, but every time he has come back again. About a month ago he was in a coma for 30 hours, but now he is recovered from that. He has to have everything liquidised, and he has his drinks thickened to prevent choking.

I expect a phone call to tell me he's had another stroke at any time. I don't sleep well because I anticipate a call. All the staff at the home say how amazing it is that he's still there, so they mustn't expect him to keep going, but he seems as strong as an ox. Other people who are much younger have come into the home much more active than Dad, but have died after a short while. I visit every day and recently he has been very hostile, so it's a very stressful situation. I think it is very unpredictable. I hope for a stroke in his sleep, but I fear we will just have to watch as he loses all dignity, bit by bit. Sorry I can't give you any more hope.

Keep on posting, though. There is a wealth of knowledge and experience on here, and most questions will be answered with more definite information.

Love Sue xxx

 

[SarahR]

Thank you

Thanks for all of your kind replies. Dad was without chest infections from late June onwards but has now got another one just today, so it's the first in quite a while.

After I posted before, in May-June when he was still having recurrent infections, our GP eventually said he suspected it would be months, not years, and not necessarily very many of those. Which was in a way what we wanted to hear, but was also horribly upsetting. But, after he stopped getting infections for a while, he said it could be that Dad would go on for longer than he'd suspected at first. So, we still don't know, which I still find difficult, but I've accepted that I don't know what will happen! And just to be here as much as possible.

Thank you for your replies and hope all of your situations improve.

 

[thatwoman]

Hi Sarah,

I replied to your original post. Dad died in July, and it was a long week of him deteriorating. He ate less and less in the weeks leading up to his death, and the GP came a few times to see if there was any infection. He seemed to be in pain when he was being moved, so it was decided he would stay in bed and was given more morphine (he was already on morphine patches.) In the last few days they set up syringe-drivers and from that time on, he didn't regain consciousness. He didn't seem to be in any distress, and just slipped away while my sister had gone home for tea! We had been with him day and night for 4 days, and he seemed quite settled, then he just gave a big sigh and was gone. On the Saturday before this, he had greeted my daughter by name, which was the first time in over a year. Later that day he had told her that he didn't need to drink any more, and she told him that was ok if that was how he felt, but there was a drink for him if he wanted it. He had one more drink after that, the following day, but it seemed as if he knew he was going, and he was quite content.

I was still shell-shocked when he finally died. He'd been at the brink so many times, I don't think I really believed it. I still drive to the home on automatic pilot, and have to stop myself from going in. I think I'm coping quite well, but we haven't been able to face emptying his house yet, so it's early days. I just wanted you to know that it doesn't have to be too dramatic at the end. I'm just glad I was there. My son, my older daughter and my 2 year old granddaughter were all in the room with me when he died. It was strange, because most of the time it was just me, or me and my younger sister, but my family had come to persuade me to take a break and I knew I wanted to stay a little longer.

Love to you while you carry on your journey. If Dad's illness has taught me anything, it's to make the most of any good times, and ignore the bad times (he won't have meant whatever horrible things he said.) I hope your Dad is as well as he can be,

Sue xxx

 

[SarahR]

Hi Sarah,

I replied to your original post. Dad died in July, and it was a long week of him deteriorating. He ate less and less in the weeks leading up to his death, and the GP came a few times to see if there was any infection. He seemed to be in pain when he was being moved, so it was decided he would stay in bed and was given more morphine (he was already on morphine patches.) In the last few days they set up syringe-drivers and from that time on, he didn't regain consciousness. He didn't seem to be in any distress, and just slipped away while my sister had gone home for tea! We had been with him day and night for 4 days, and he seemed quite settled, then he just gave a big sigh and was gone. On the Saturday before this, he had greeted my daughter by name, which was the first time in over a year. Later that day he had told her that he didn't need to drink any more, and she told him that was ok if that was how he felt, but there was a drink for him if he wanted it. He had one more drink after that, the following day, but it seemed as if he knew he was going, and he was quite content.

I was still shell-shocked when he finally died. He'd been at the brink so many times, I don't think I really believed it. I still drive to the home on automatic pilot, and have to stop myself from going in. I think I'm coping quite well, but we haven't been able to face emptying his house yet, so it's early days. I just wanted you to know that it doesn't have to be too dramatic at the end. I'm just glad I was there. My son, my older daughter and my 2 year old granddaughter were all in the room with me when he died. It was strange, because most of the time it was just me, or me and my younger sister, but my family had come to persuade me to take a break and I knew I wanted to stay a little longer.

Love to you while you carry on your journey. If Dad's illness has taught me anything, it's to make the most of any good times, and ignore the bad times (he won't have meant whatever horrible things he said.) I hope your Dad is as well as he can be,

Sue xxx

Hi Sue

I haven't checked back for a while, I am so sorry to hear about your Dad, thank you for replying to me again. My sympathies and all best wishes
Sarah

 

[lynnieb]

my dad

Hi everyone

I'm new to these forums. I've signed up to ask a question I suspect I'll get no answer to. Basically I want to know when my father is likely to die. I know that a definite prognosis for vascular dementia is a myth, but I wonder if there is anyone out there who has cared for / is caring for someone whose experience with vascular dementia mirrors my father's, and if so what your thoughts are on how much time he has left.

Dad developed vascular dementia slowly after a series of transient ischemic attacks (mini-strokes) when I was in my teens (about 14-15 years ago). The doctor didn't diagnose it properly until about 5 years ago, but he estimates Dad's dementia began to develop in earnest about 10 years ago.

Dad is 87. He also has COPD (emphysema) which isn't yet that acute but causes him to wheeze a lot and is on tiotropium and steroids for this. Last year he got his first chest infection which put him in bed for a couple of weeks and all but destroyed his motor skills, and from which he slowly recovered afterward. This year he has had two chest infections. The last one started a month ago and he has not recovered function, but has suffered an extremely rapid decline since then, perhaps from a silent stroke. He is now bedridden and cannot walk - at the moment he can't even lift his head. It seems he has forgotten how to walk or to move. He has lost an awful lot of weight due to his lack of appetite and is very thin. This week he came off antibiotics for the chest infection but has now developed an acute urine infection. He became incontinent a couple of weeks ago very suddenly - previously he's only had problems with continence on a couple of occasions, but very suddenly this changed so he is now doubly incontinent. He has some obvious difficulty in chewing and swallowing and often coughs quite a lot after drinking fluids.

He stills knows who we are most of the time but can't speak very well at all - very often he slurs all of the words in a sentence as though he is drunk, or produces half of a statement that is only a vaguely appropriate response. He gets agitated at times - he is clearly frustrated and deeply confused about what is happening and I think is starting to have vague hallucinations.

Our GP is clear that this is end stage vascular dementia, but isn't keen to offer a prognosis.

I love my father more than anything. I want to know when he will die because witnessing his suffering - which is often acute both physically and emotionally - is heartbreaking, and also so I can plan when to go home to be with him and support my mother (who is caring for him with outside assistance) full-time.

If anybody can offer any thoughts on what they would imagine his prognosis to be from their own experience, I would be very grateful.

Thank you.

hi

we think my dad has been ill for a good while, my mum died in 2008, they had been married 50 yrs plus, we believe he had a break down when she died , he was found 6 miles from his home and they believe he had walked this back and forth at least 3 times, he was taken into the hospital and actually escaped off the locked ward 3 times. He was moved to another hospital and there he was diagnosed with vascular dementia,vascular disease and we were informed he had epilepsy. He stayed for a month, they allowed him to go home with care workers going in three times a day. He then in 2011 had a stroke and lost his left field of vision, we went in every day did any food shop, he also smoked and we made him a meal. He got worse became hostile, nasty, hid food or through it out, called the police.He simply became to hard to care for, I was at breaking point, the social services eventually got involved and once again he went to hospital, from there he went into a home.It took me four years not to argue back at him, I have learnt just to say yes dad! He now needs to have help to get up, needs incontinent pads has had a fare few seizures and is currently back in hospital after suffering a seizure. We have been informed he has a serious infection pneumonia, they also believe he has a water infection, he is hardly opening his eyes waffling for want of a better word. he will be in hospital for a while, it is so sad to see him dying bit by bit in front of us, love him as we all do it would be a blessing if he joined his beloved wife. What a horrible disease it is. All you can do is be there, support and stay strong.

 

[zeeeb]

Perhaps the Dr is waiting for the go ahead from family about palliative care and do not resuscitate orders. Maybe he doesn't want to say it in case it is unacceptable and upsetting to you. But if you think about it and decide where you stand on the subject, then you can ask him / her and that might open up the dialogue.