Vascular dementia - timelines

[whatohwhattodo]

some may remember my previous post where my mum was in hospital and we were searching for what could be the cause. My mum has just been provisionally diagnosed with vascular dementia - no ct scan but she had been deteriorating in hospital and they said they suspected that - symptoms seem to fit.

we are in a position where they have transferred her into a nursing home, she is essentially immobile and needs a hoist to be moved (had falls resulting in long stays in hospital which escalated already poor mobility)
she started having problems swallowing maybe around 4-6 weeks ago. Is eating very tiny amounts - mainly liquidised or mashed.
in the last 2 weeks or so we cannot seem to have a conversation at all with her

she seems to have gone downhill so gmfats in the last 2-3 weeks.

looking back she probably has had it for sometime but it never got picked up - maybe 18 months I would say some of the symptoms have been there. She is 81

i have no idea what to expect on timelines - hospital did a DNR while she was in there and obviously now has no quality of life.

Vascular dementia is a series of mini strokes or TIAs. After each one there is a decline and then a plateau. The loss of swallow is significant as when they can no longer eat they won’t tube feed. However sometimes they can revive so it’s difficult to know. My mother stopped eating much but lasted another 6 months .

My grandmother in law was on a liquid diet for about 18 months, about 12 years after she was first diagnosed, and in her mid 90s. It was hideous to watch. Equally, I know some dont last very long at all - I suppose it depends on where the TIAs are happening in the brain. Watching that GMIL’s daughter, my MIL, with it now. It’s hideous.

Thank you. @chuzzlewitthechipmunki cannot see she would be as long as 18 months.

ita so hard i am a single parent of two teens - took the youngest to see her this weekend. Feel like i need to take the oldest and then I probably wont again.

2 hours each way so a whole day at the weekend - no chance to go down during the week. and on office days I’m out 12-14 hours a day.

its just exhausting.

That sounds super tough. GMIL had a tough, tough physical body and it was awful knowing what she became for so long. I wish us all a more peaceful passing than that.

That is so hard. My DM lost the ability to hold a conversation possibly 3 years before she died. We would occasionally see flashes of understanding but they were few and far between. She was also immobile and hoisted from bed to chair to wheelchair and her hands were curled into fists.

She stopped eating solid food about six months before she died.

My children were all adults and faced her decline in different ways. My oldest son visited her once and couldn't bear to see her again but he sent regular cards and photos for her. Two of the family had babies and they took them to visit which meant easy visits because they were in the main sitting room and the babies were a great source of entertainment for everyone. My youngest and her husband had a pretend wedding reception (no way DM could have made the wedding a couple of days before) and that was as much she could take. My middle daughter visited once a month and was with her the day before she died. I told them all that if they wanted to see her for their own sake then go. If they were doing if for her they didn't need to.

It's a heartbreaking slow goodbye and I really feel for you all.

My gran died of a massive stroke caused by vascular dementia and my mum has been diagnosed in the last year. Her confusion ebbs a flows for now.

Thanks @IthinkIsawahairbrushbackthere yes her hands are a bit curled and she cannot really hold a cup anymore we have to feed her with a beaker and straw.

my dad is adamant she should only go back to hospital as a last resort - I don’t think they really fed her properly my sister went and just found the tray on the table and my mum asleep - she was meant to be monitored for food intake.

i don’t know at what point the home can keep her to or if she will need to go to a more medical one.

My worries that my sister has major MH issues - high levels of self harm (although relatively stable recently) and I know that when my mum passes it will send her over the edge as my mum is the one that sympathises with her. Me and my dad are a bit more matter of fact and practical. In fact my dad seems to be coping with this relatively well at the moment like me I would say he focuses on the practical things he can do and blocks out the emotion.

She is getting regular chest infections (she has COPD and also only has part of one lung), she had pneumonia last time she was in hospital in the summer and a collapsed lung this time. I suspect that may be the tipping point not the dementia.

My mother’s hands also curled into a fist for about 3 months before she died.

its a cruel disease

So sorry you're going through this. My FIL died 18 months after diagnosis of mixed dementia (vascular and Alzheimer's), had multiple TIAs in years before the diagnosis; did OK-ish in a care home for over a year and still enjoyed spending time with our dog when we visited, he was in fact convinced it was his dog and we were just taking care of her for him. He then suffered a major stroke which left him bed-bound and paralysed on one side. He died three months later, and was on palliative care for last two weeks which meant no more hospital, just support from district nurses. This is what he wanted and as my wife had health POA she was able to ask that he wasn't taken to hospital when he rapidly deteriorated, a decision that the home care GP and nurses actually agreed with but only the POA holder could make it.

Thanks for all these comments - it’s sounds from them as if my mum is further along before diagnosis - she has never been picked up as having a tia though.

had a call from nursing home this morning - ambulance came and said she needed hospital. Chest infection not cleared and she’s not eating / drinking On way down and dad called to say they have called him and told him to come in. So it’s not looking good news.

its shit but I cannot deny that she was not happy how she was - I think she had mentally checked out. I suspect is was not eating by choice as much as unable.

just posting to pass time while I am waiting for my sister to use the loo in the services!

Hope you’re ok @whatohwhattodoand thst whatever the next hours and days brings, you get the support you need.

Thanks @chuzzlewitthechipmunk just sitting in a&e with her.

she had gone into septic shock, she has sepsis, pneumonia and a PE. She also has kidney injury as she was so dehydrated - that’s something I am going to follow up with the home - I have sent an email asking how they measure fluid intake and output. I suspect they didn’t……

she is on 15l of oxygen. she has responded to treatment but it’s still touch and go from how I understand it.

So sorry it's taken a turn @whatohwhattodo - hope they can make her comfortable and give appropriate treatment. A&E is a grim wait these days so hope you can get a brew and have a charger. It's hard on you too.

This all sounds horribly familiar. My lovely DF died on Monday only 12 months on from his VD diagnosis.

He too lost mobility and then last week developed a chest infection/pneumonia linked to food aspiration. He did not respond to antibiotics.

Vascular dementia is horrible - it seems to affect mobility more than other forms and this was why DF ended up in a home, DM had hideous guilt about this.

Look after yourself, @whatohwhattodo it is so hard.

It’s such a cruel illness. I’m so sorry you’re going through this.

Thanks @Holesintheground trying to decide what to do. I’m so tired but it feels wrong to go back to my parents house and get sleep and leave her here alone. My sister and dad are back there already. I’m in a hard plastic chair. She seems stable. I have battery and lead and a book. I came prepared

It's really difficult because there is no text book case.

My DM was diagnosed at 63, she died at 69 last Christmas. She went downhill, VERY fast and was in a care home for the last four years of life, apparently in the 'late stages'. I was called to the home or hospital 3-4 times in the 12 months before she finally died, because they thought she wouldn't make it through the night. When she did die, it came completely out of the blue. She had been walking around and outside for the first time in years. Bonkers.