Newbie

[frannaefc]

Hi

I saw this site and thought it may help to answer some of the questions I have - what better way than from people who are suffering, or have loved ones who are suffering,

My mum has been in a dementia care-home for the last three years having shown signs of deterioration for a long time. She has Vascular dementia.

She is 94 years old but is physically good for someone of her age. However her mental capacity has worsened. When she speaks it makes little sense, and from a loving. cuddly person she often flinches at our touch.

Recently - the last few weeks - she seems to sleep most of the day. She increasingly isolates herself more from the rest of the people. I spoke with the care-home today with some questions and for the first time the term "last stage" of dementia was mentioned.

I asked the question I think most people would: what does this mean in terms of mum's life going forward? So I wondered if that was a question someone on here may have experience of. Not so much an answer as I hope and pray mum has many years ahead - but what are other people's experience when told that a loved-one is at or approaching "last stage".

I don't know what it means but it sounds so final and makes me so sad. I thought about trying to stimulate her with puzzles, game, music. When I look at her she seems to be lost - speaks of how much she hates being in the care-home but I wouldn't know how to care for her and for this I feel guilty and ashamed I can't do more for her. The people who look after her say that there'll be more bad days ahead but to just be with her as much as we can.

I don't really know the difference when people talk about the different types of dementia. Mum has vascular dementia as I said earlier what exactly does that mean, and how does it differ to early-onset or Alzheimer's ?

She still recognises us, and some days I catch a little bit of her magic. Sorry rambling a bit.

Thanks and we would be thankful for any advice

 

[Violet Jane]

'Early onset' means that the person started showing symptoms of dementia below the age of 65. That's different from 'early stage' which means that the person is in the early stages of dementia. In the later stages of dementia I don't think that there's much difference between people with a diagnosis of vascular dementia and people with a diagnosis of Alzheimer's Disease. People tend to sleep a lot more, eat less and show less interest in things and people. They require a lot of help, are often incontinent and often have poor mobility. It's common for people to have frequent infections. This stage can go on for quite a while, with the person deteriorating over weeks or months, but people can suddenly have a stroke or overwhelming infection which takes them. You can ask the home to clarify what they meant by 'last stage'. They will have a lot of experience and can give you some sort of time scale. Be aware that 'last stage' and 'end of life' are sometimes used interchangeably although EOL should really mean that the person is actually dying.

 

[frannaefc]

'Early onset' means that the person started showing symptoms of dementia below the age of 65. That's different from 'early stage' which means that the person is in the early stages of dementia. In the later stages of dementia I don't think that there's much difference between people with a diagnosis of vascular dementia and people with a diagnosis of Alzheimer's Disease. People tend to sleep a lot more, eat less and show less interest in things and people. They require a lot of help, are often incontinent and often have poor mobility. It's common for people to have frequent infections. This stage can go on for quite a while, with the person deteriorating over weeks or months, but people can suddenly have a stroke or overwhelming infection which takes them. You can ask the home to clarify what they meant by 'last stage'. They will have a lot of experience and can give you some sort of time scale. Be aware that 'last stage' and 'end of life' are sometimes used interchangeably although EOL should really mean that the person is actually dying.

Thank you that was very helpful

 

[SherwoodSue]

No one has a Crystal ball. We all feel if we knew what was coming down the road exactly, we would prepare better and grieve less. I wonder if this is realistic? Grief is grief and loss is loss after all.

In later stages, folks do die OF Alzheimer’s but it is also said that people with Vascular Dementia die WITH V. Dementia,
In other words the heart disease and stroke which caused the vascular dementia in the first place can return and life ends.

Big girl pants on. Have you made your wishes known about resus attempts? Here we have something called a RESPECT form.
Its good to have those conversations now.

My mum is on palliative care only and has perked up. 😃 Not the same as end of life as has been said already.

If someone suggests advanced medications and/ or a syringe driver as a way to administer such medications then you are moving closer to saying goodbye.

Please don’t be at home when the guilt monster calls. You couldn’t manage this stage at home easily.

I wish you all well.

 

[Gosling]

Hello @frannaefc and welcome to this friendly and supportive forum. .
I am sorry to read about your Mum. It is good that you still have some bright 'magic' moments with her. That will hopefully be of some comfort.
I would agree , do ask for clarification from the care home as to what they meant by last stage. I also agree that last stage would possibly mean she is approaching end of life ... but I emphasise 'approaching' , as these stages can go on for some time... weeks, months.. or things can suddenly take a turn for the worse and the end happens more quickly. You just never know.
My own dear Mum's end of life stage carried on for a lot longer than I ever anticipated, and although I didn't want to lose her, I didn't want to see her continued deterioration towards death and it was a blessing when she passed. I miss her so much still, I hope that's not too bleak a picture.
So yes, do ask the care home management.

This forum is really a great place for support and understanding. Some members find it helps just putting things down on here. Members really do understand and want to help.

 

[frannaefc]

Thank you. I did feel partly that putting stuff down would help. You're very kind to reply.

 

[frannaefc]

No one has a Crystal ball. We all feel if we knew what was coming down the road exactly, we would prepare better and grieve less. I wonder if this is realistic? Grief is grief and loss is loss after all.

In later stages, folks do die OF Alzheimer’s but it is also said that people with Vascular Dementia die WITH V. Dementia,
In other words the heart disease and stroke which caused the vascular dementia in the first place can return and life ends.

Big girl pants on. Have you made your wishes known about resus attempts? Here we have something called a RESPECT form.
Its good to have those conversations now.

My mum is on palliative care only and has perked up. 😃 Not the same as end of life as has been said already.

If someone suggests advanced medications and/ or a syringe driver as a way to administer such medications then you are moving closer to saying goodbye.

Please don’t be at home when the guilt monster calls. You couldn’t manage this stage at home easily.

I wish you all well.

Thank you.

 

[Angel55]

Hello 💗

Sending you a warm welcome here.

Dementia is an umbrella term with many differing types underneath it.

Each person is also very individual as well and dementia illnesses will have common threads and things that will be individual to that person too.

It is my own view that hearing is one of the last senses the leave someone, I carried on talking to my own mother regardless of whether her eyes were open or there was seemingly no response (this was not a dementia illness) but I would talk to her as if she could hear my voice or hold her hand. I took comfort from those times much later on but I won't pretend those times were not hard.

Music is soothing and combats the silences.

There should be no judgements on whether or not someone visits or how long , do whatever you feel is comfortable for you and your mum. 💗

I used to read the newspaper out and chat about all manor of random things ♥️

As for whether you could care for your mum at home then put that to one side and instead think that you are still caring and you have ensured your mum is as safe and warm and cared for as much as she possibly could be given the illness and circumstances.

We can only do our best x

Share your thoughts if you think it helps or read some of the threads. I hope you will find the forum helpful x

 

[frannaefc]

Made me feel quite emotional reading your response - so full of warmth and wisdom.

I visit on the weekend but with lighter nights arriving will hopefully get to her midweek too.

A few weeks back she didn't wake up so I sat and played music to her, stroked her hand just as you said.

Thanks so much for this. Means a lot.

 

[Angel55]

Made me feel quite emotional reading your response - so full of warmth and wisdom.

I visit on the weekend but with lighter nights arriving will hopefully get to her midweek too.

A few weeks back she didn't wake up so I sat and played music to her, stroked her hand just as you said.

Thanks so much for this. Means a lot.

❤️ Take Care x