Stopping eating and sleeping

[CB15]

Hi there - my first post. My mum is soon to be 76, and I would say middle to late stages based on what I have read on here.
She is incontinent, very confused and hallucinating, speech is poor, very teary, anxious and sad, has stopped eating as much and up many, many times in the night.

Does anyone have any tips for eating or sleeping?

She used to never say no to a biscuit or a cheese and tomato sandwich and she won’t even eat that now. Have found she likes sweet things more than savoury, but doesn’t seem a very balanced diet at all, but may be the only option.

Sleep wise she has my dad up sometimes 20 times in the night and keeps taking down her incontinence pants and makes a mess. My dad is shattered and recently had flu, which I think has been caused by a low immune system due to lack of sleep.

My sister and I are doing what we can, but, looking for any tips to ensure she eats or my dad can actually get some sleep.

I don’t believe we’re at the point of a care home and know my dad would be very resistant to that.

 

[canary]

Hello @CB15 and welcome to Talking Point

It sounds like your mum has multiple behaviour challenges - all typical of advanced dementia. She now needs watching 24/7.

I am wondering why you dont believe she is at the stage of needing a care home. Your dad can no longer cope and it is already affecting his health. How much worse do you feel it aught to get?

In a care home she would be looked after by a whole team of people, round the clock, in shifts and they would be able to go home and get sleep so they were not tired and frazzled. Yes, it would be a wrench and its almost always associated with feelings of guilt, but it is unwarranted - it is almost impossible to look after someone with dementia at home right up to the end. Your dad would be able to visit and spend quality time with her rather than the constant firefighting.

 

[Violet Jane]

If your Dad can no longer cope then it is time for a care home. The very broken nights are unlikely to improve; they are a common feature of later stage dementia. Doctors are very reluctant to prescribe sleeping tablets (which might not work) but you can ask.

Some people add buttons to clothes so that their PWD can't remove their pads / pants. You can also buy sleepsuits / onesies which would have the same effect.

Like @canary, I am wondering how much worse you feel things should get before a care home is considered. I don't want to scare you but carers are 30% more likely to die than non-carers. There are quite a few posts on this forum which mention a carer parent suddenly passing away. Relatively few people manage to care for a PWD at home right to the end. It usually involves a team of family members who are all available to provide plenty of care, paid carers, a lot of respite care and a relatively 'easy' PWD. In many cases the PWD is taken by another illness or medical event such as cancer or a stroke before the end of his/her dementia 'journey'.

As an alternative to a care home you could engage a waking night carer to deal with the broken nights. It's expensive though as you are effectively paying for a night shift. If that's not possible then could you and your sister stay over some nights to look after your Mum so that your Dad can have an unbroken night's sleep?

 

[Rosettastone57]

There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. You have now reached that point. I can only concur with other posters about full time care. I'm sure that's not what you want to hear.

 

[Collywobbles]

To add to the above, at this stage, a balanced diet is something you’ll probably have to abandon.

My Mum flatly refuses to eat anything that looks like a vegetable - she says they all taste bitter and nasty, which could well be a change in her perception due to the dementia. Apparently the sweet taste receptors on the tongue are the last to be affected, so it stands to reason that sweet foods will be more palatable. My Mum enjoys yoghurt and raspberries (with lots of sugar!) so although sugary, she’s at least getting some dairy, fruit and protein.

In your shoes, I’d just take the fact that she’ll eat something, occasionally, as a win.

 

[ronchy]

When my husband was in the late stages he ate much less because he had difficulties swallowing and this may be part of your mum's reluctance to eat much. I managed to get him to eat a little bit of stuff , small amounts during the day rather than at specific mealtimes. I chose food which had been cooked then pureed but anything which needed to be chewed I had to abandon. The nurse told me to get some jellies and to have them on hand if there were problems in taking liquids. These things did help though eventually he just turned his head away when anything was offered.

 

[mogdog]

Hi there - my first post. My mum is soon to be 76, and I would say middle to late stages based on what I have read on here.
She is incontinent, very confused and hallucinating, speech is poor, very teary, anxious and sad, has stopped eating as much and up many, many times in the night.

Does anyone have any tips for eating or sleeping?

She used to never say no to a biscuit or a cheese and tomato sandwich and she won’t even eat that now. Have found she likes sweet things more than savoury, but doesn’t seem a very balanced diet at all, but may be the only option.

Sleep wise she has my dad up sometimes 20 times in the night and keeps taking down her incontinence pants and makes a mess. My dad is shattered and recently had flu, which I think has been caused by a low immune system due to lack of sleep.

My sister and I are doing what we can, but, looking for any tips to ensure she eats or my dad can actually get some sleep.

I don’t believe we’re at the point of a care home and know my dad would be very resistant to that.

Hi, My Dad with support from me was caring for my Mum with Alzheimers, he took the brunt of the care as it was him that had the disturbed nights and lived with it 24/7 but he could not face her going into care, sadly my dear Dad wore hisself out and passed away suddenly. Dealing with the loss of my Dad and the ongoing care for my Mum has been very hard and with hindsight (a wonderful thing) I really would have tried harder to convince my Dad a care home would be better. This all happened 3 years ago, Mum is still alive in the late stages of Alzheimers and she has to have 24 hour care which I have managed to arrange in her own home but the stress and responsibility on me has been exhausting. Always bare in mind when making any decisions that you need to consider the long term as this disease can go on for years.