Dementia progression

[scott1556]

I havent been on this forum for a long time post my mums BI. She did progress well and continued to live on her own for the last 4 years with support. The BI has led to vascular dementia,

Recently, the dementia has started to worsen and we have had to move her into a Care Home for her safety and our peace of mind. She seemed to settle in well and was being well cared for.

However, she had a bad fall at the weekend and has gone down hill drastically. She is currently in Hospital and has moved into a, what I would call, last end dementia state: incontinent, very confused, agitated, making no sense, cant feed herself, cant walk etc.

Its awful to see her like this, it breaks our heart to see our mum like this. She was such a proud, lively character.

My question is a hard one. Has anyone got any experience of how long this state lasts for and what to expect? To see mum like this is so heartbreaking - to try to console her and offer her comfort when she doesn't understand. If I am honest, I just want God to take her now, is that selfish? Just wondering if anyone on this forum has any experience of this...

Sharon

[Pairofboots]

Hi Scott. I have been in your shoes with my dad. He had a number of strokes, generally recovering well, until the last one when he didn't recover. My step mum, didn't tell me about his strokes until after the last one. We lived a fair distance away from each other, so visits were not frequent, and I can't say I had noticed any real difference, apart from he seemed to age. I just put it down to him physically aging. There was no missing his last stroke.

I held the guilt from when he was admitted to hospital, having to place the DNR on him. Step mum called me hard for allowing this, but we were all present, it was just that I was the only one who asked the question about what would be the result if he had a further stroke or arrested. To me, being from a nursing background, it was the only choice.

The old boy beat the odds, and recovered well enough for discharge, but he couldn't go home as such. Step mum put him in a care home. If things had been different, I wouldn't have done this, another guilt.

I didn't get to visit that often because of distance (guilt). On my last visit, I was surprised to see him in the reception area of the home. As I approached, he spoke to me by name, and said let's go in here (the day room, or gods waiting room). He spoke clearly and with clarity. As he sat, the switch turned, and he regressed back to the very old, gibbering shell of what he was. This was some time after his discharge from hospital, and I still feel there must have been a reason for that moment of clarity.

I don't think the "how long" is useful. When I trained, I spent time in dementia care. I think we spent more time caring for relatives. I don't mean that the patients were neglected, just that the relatives didn't, or couldn't accept the changes in their mum/dad/etc. We had to explain how dementia progressed, that effectively the person they knew wasn't the physical body that didn't recognise them, repeated phrase's, gibbered, became distressed. Obviously to them it was still mum or dad.

There isn't a time scale, people progress at different rates. I wish there was a clear answer. I know from my experience, I would have liked to have had some certainty. Grief starts I suppose from the point you loose the person you know although they still live. I felt guilty for the amount of times I hoped for the end to come. When my dad did pass, I felt guilty for the relief it brought.

I'm sorry. There isn't a kind, a nice way of discussing dementia. It is a wicked condition. For relatives it is hard. The comfort I think is that with vascular dementia, the person we know and love leaves and is not aware of who they become.

From working with people at various stages, and version dementia, I can't say any are nice, but there are worse dementia than vascular. Ok this is from outside imaging what the person knows. I'd like to know, to understand, to have that comfort that the individual isn't stressed, scared, confused at the end stage, but there isn't an answer. I maybe a bit blunt in some of my thoughts, for which I apologise.

I am currently being assessed for early onset dementia, and I worry that it will be confirmed, I am worried I will loose me, although I lost the original me years ago when I had a stroke, I worry about stuff. I want the prognosis to be disprove. I'd sooner not know the answer.

I wish you and your mother well 🍀

[scott1556 in reply to Pairofboots]

Hello there,Thank you so much for coming back to me, the information is really informative. You are right, mum seems happy, chattering away about packing her case, going on holiday, dont forget to pack my shoes etc - its us, the family that find it hard to hear or come to terms with.

We have no choice but to roll with it, but its a cruel condition.

I wish you well in your prognosis - take care.

Sharon

[cat3]

I really feel for you Sharon. We've had two loved ones admitted to care homes in18 months as a result of dementia. My partner's mum (like yours) had always been so independent and physically/cognitively fit but became absent minded & confused around 18 months ago.

Despite daytime carers she fell and became a danger to herself, so a care home was sadly inevitable. Family visit every other day but she has no idea who they are (just that "It's so nice of you people to visit".

And I attended the funeral of my next door neighbour (one of my dearest friends for 30yrs). He was sectioned and taken into care 18 months ago where he remained until last week when he passed in his sleep. He had been the kindest, fittest and funniest man, and every carer the carehome could spare was at his funeral.

Please don't ever think yourself selfish Sharon for wanting your mum's plight to end quickly. My neighbour was so weak and poorly at the end and his wife and I spoke daily of how his demise would be the only kindness for him. She visited him every day. So sad for everyone who'd known him.

I think it's the cruelest illness for both the sufferer and the loved ones and wish the best possible outcome for you, your family and your dear mum. Sincere regards, Cat x

[Butterfly28]

Hello Sharon. I can only echo what Cat and Pair of Boots say. I lost my mother to dementia a few years ago. She had to be placed in a care home for her own safety - a decision she would have hated if she had been fully aware of it as she was so proud and independent. Dementia is a truly awful condition so try not to beat yourself up about it and certainly not about wanting your mum’s plight to end quickly.

Take care of yourself as well - it’s an emotional roller coaster - and even if your mum is chattering nonsense go with the flow. Kind wishes to you and your family.

[Catperson18]

Morning, I am experiencing this at the moment with my own Mother. She had a bleed on the brain which I don’t think was detected which turned to vascular dementia. My Dad has put her in a home this week while he sorts a hospital bed and fix the wet room. I am going to visit her today.

At first her decline was gradual, but over the last 6 months it has really progressed, not wanting to eat or get up, most recently she has been saying she doesn’t want to be here which is terrible to hear.

However most days she seems in good spirits, I just let her talk nonsense to me! I even have a brother now (I haven’t I’m an only child)

In answer to your question I am not sure how long she will last, she is incredibly thin and not eating enough, that said I thought putting her in the home would be the end game but she seems to be in good spirits. From what I have been reading all of the little elements of decline just seem to get worse until they stop eating entirely.

I’m so sorry for your situation, hopefully she will just go peacefully. Don’t feel any kind of guilt for thinking you want her to go. I have those thoughts all of the time, even just for my Dad to have some of his life back and to be able to go fishing or trips away.

The irony is now I can’t work I should be able to visit more, but after my own TBI I can’t drive. And it seems terrible to think this way but I have my own mental health to think of.

Nathan