Later stages tips?

[NellieP]

Hello,
It seems we have moved into another stage as my mum is now spending a lot more time sleeping.

My mum has had dementia for at least 10 years and she is cared for by her partner at home, who is aware that dying in her sleep is a possibility but seemed worried today as he had difficulty waking her up this morning.
She is eating but has always had a small appetite and seems to losing weight, she has been for a check-up with the GP but they don't seem concerned with her weight loss.
She is struggling with continence and we are trying a variety of incontinence knickers and bed pads to reduce the impact of accidents.

I'm not sure quite what to expect next or what else to do now to support my mum and her partner.
TIA for suggestions or thoughts

 

[Grannie G]

Your mum`s partner is to be admired for caring for your mum at home for so long @NellieP

I think all you can do is be on hand to help whenever possible, whether it`s housework, shopping or just sitting with your mum while her partner has a break.

I hope she`s as comfortable as can be.

 

[smithdee]

Hello,
It seems we have moved into another stage as my mum is now spending a lot more time sleeping.

My mum has had dementia for at least 10 years and she is cared for by her partner at home, who is aware that dying in her sleep is a possibility but seemed worried today as he had difficulty waking her up this morning.
She is eating but has always had a small appetite and seems to losing weight, she has been for a check-up with the GP but they don't seem concerned with her weight loss.
She is struggling with continence and we are trying a variety of incontinence knickers and bed pads to reduce the impact of accidents.

I'm not sure quite what to expect next or what else to do now to support my mum and her partner.
TIA for suggestions or thoughts

Hi @NellieP - my dad has had dementia for around 5 years now. He too is in the later stages, I would say probably further on than your mum so I can offer some tips of sorts.

- The best incontinence products we have found are Abena. My dad has his prescribed now, but if you can't get them prescribed you can buy them direct.

-My dad also spends all day sleeping, even after a full nights sleep. In the later stages this is very normal. We have had a pressure cushion provided by the district nurse as he is sat around for so long after bed without moving to eat, so this (so far) has avoided any sores.

-My dad picks and chooses when he wants to eat, and who he wants to feed him. If it's my mum and he doesn't want to eat what she has made, or let her feed him, then he will just point blank refuse. Whilst I try to help, he sometimes refuses me too, and I also can't be there all the time. I would say as long as she is eating, even if it is a small amount, this probably isn't something to be too worried about at the moment.

- You mention your mums partner cares for her. Is it perhaps worth considering carers to assist? My dad has carers twice a day as he got aggressive towards my mum providing his personal care (apparently this is also normal in later stages), even though she had done it since he was diagnosed.

 

[NellieP]

Your mum`s partner is to be admired for caring for your mum at home for so long @NellieP

I think all you can do is be on hand to help whenever possible, whether it`s housework, shopping or just sitting with your mum while her partner has a break.

I hope she`s as comfortable as can be.

Thanks for your kind words. We have tried many ways to offer my Mum's partner a break including getting carers in. My mum gets upset if her partner isn't around or if there is another woman in the house (including me). When carers came in they were briskly shown the door. Other offers are help are refused, I think they are seen as a suggestion that they are not coping. But wondering if that may change presuming she sleeps more?

 

[NellieP]

Hi @NellieP - my dad has had dementia for around 5 years now. He too is in the later stages, I would say probably further on than your mum so I can offer some tips of sorts.

- The best incontinence products we have found are Abena. My dad has his prescribed now, but if you can't get them prescribed you can buy them direct.

-My dad also spends all day sleeping, even after a full nights sleep. In the later stages this is very normal. We have had a pressure cushion provided by the district nurse as he is sat around for so long after bed without moving to eat, so this (so far) has avoided any sores.

-My dad picks and chooses when he wants to eat, and who he wants to feed him. If it's my mum and he doesn't want to eat what she has made, or let her feed him, then he will just point blank refuse. Whilst I try to help, he sometimes refuses me too, and I also can't be there all the time. I would say as long as she is eating, even if it is a small amount, this probably isn't something to be too worried about at the moment.

- You mention your mums partner cares for her. Is it perhaps worth considering carers to assist? My dad has carers twice a day as he got aggressive towards my mum providing his personal care (apparently this is also normal in later stages), even though she had done it since he was diagnosed.

Thanks for your help and suggestions.
We tried carers but they were quickly shown the door as my mum was very suspicious of anyone else in the house including me. She doesn't like her partner to be out of site but I am wondering if this changes as she sleeps more. I am wondering if offering to sit with my mum whilst she is asleep would work? As soon as wakes up she is going to be looking for her partner so he would need to be somewhere nearby.