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[DottyD68]

Hi there,

I have been the main family carer for my mum who was diagnosed with Alzheimers at beginning of Covid. All my siblings live elsewhere in the country. As with many women of that generation she is a strong, dominant, independant and stubborn so that has made an horrendous journey even more tortuous as many of her symptoms are behavioural. It is fair to say I have struggled, as this came out of the blue whilst trying to manage my own menopausal journey, but kind of think that I have done "ok" (as in I haven't spontaneously combusted.....yet!)

She has been in a local care home for 3 years. Things were relatively stable earlier this year but she had a TIA two months ago and it was looking very very grim for a week and I had got my head around it. But in true terminator style she has rallied and back "walking" (shuffling) after being immobile for 6 weeks. However, she is now hardly eating and has lost a huge amount of weight. I know this is only going in one direction but I have no idea how long this phase will last (days, weeks, months???) and I just cannot settle and focus on my own life. I know there is nothing I can do but wait, but it is like torture and affecting my own health now. I have so many conflicting emotions.

I exercise daily (although I have developed a bad back which I am sure is stress-related .....but now my HA thinks is something sinister), I do mediatation, I eat well etc etc but am unable to switch off.

Any words of advice out there from people with a similar experience. Thank you X

[CLKD]

This is very unsettling for you.  Anxiety will rise and fall for a while but we can't alter our situations.  It is what it is.  Do U have faith in the care that your Mum receives?

Is the care home adapted to look after people with dementia and to which level?  Have U discussed her situation with the Manager and the GP who oversees the Home for a care plan?  Who did the actual diagnosis, was it on-line or face2face?

It is common for those with dementia-type conditions to not want to eat or drink, apparently it's part of the slowing down process in that they forget.  MayB have a lookC at the Alzeheimer's website and ask the questions as well as MacMillan Nurses - this charity is particularly supportive.

We get the occasional urgent call about my Mum who rallies - about 12 months ago we were told on the phone that she wasn't eating, we were in the area a few days later, dropped by the Home for an update and she was fine!  Living 2 hours drive away we don't up and go immediately because at 98, her health is up and down.

MayB make some notes of what you would like to know moving forwards - let us know.

[DottyD68]

Hi CLKD,

It is a specialised EMI carehome. A brain scan diagnosed her with Alzheimers and Vascular Dementia. The staff there are excellent and I have no issues with them. They have always treated Mum really well despite her being a very difficult resident and have got to know her well over the years. I have a great relationship with the Manager and the staff - they always deal proactively with any concerns that I have and are very supportive. There is a care app which details pretty much everything she does - eat, drink, activities, sleep etc that I access all the time and saves calling them for updates.

I know that it is what is, I just have become exhausted with it all and it seems never-ending. It has dominated my life for over 5 years. I was getting check-in calls from the Alzheimers society but even those have dropped off. I will call them this week. People have stopped asking about my Mum (& me) even though the situation has become worse.

I was just wondering what other people who have experienced this did to cope at this stage of the journey.

[CLKD]

We had to back off as Mum no longer wanted us there. Lock down meant that she became isolated which increased the dementia due to lack of stimulation and I think that she simply couldn't be bothered to engage. Shame as she had a tremendous memory and was the Life and Soul for a while .......  Plus she is narcassistic which the Staff never get to C!

What kind of reaction do you get when you visit with your Mum?  Could U go less often?  Do U have hobbies to fill the visiting times by doing something for yourself?  How would U feel if U didn't visit? I've never felt guilty because I am unable to alter the situation. 

[sheila99]

I'm afraid I can't offer any insight, just to cope as best you can and remember you have a life and you need to take care of you. My Dad had vascular dementia and was really underweight. He didn't feel hunger and the doctor said either over eating or under eating is common. You can get drinks prescribed with added nutrients and he'd drink those when he wouldn't eat so they might be worth investigating. Loss of self control seems to be common too so the difficult behaviour is most likely the disease rather than her. It sounds as though she's well cared for though so that's something you don't have to worry about. If you can compartmentalise it helps, when you start to worry about her try to actively think about something else or do something that you have to concentrate on. Doesn't really help much at 4am though 🙁.

[DottyD68]

Thanks for your replies.

I agree. I feel very fortunate that she is being so well cared for and I know I wont be responsible for her end-of-life care. My husband and I had to do that at home for my father-in-law 18 months ago and that was very stressful. It has just felt like there is no escape from it all these past few years.

The carers try to give her the super-concentrated drinks. Sometimes she drinks them, sometimes she doesn't but at least she is drinking frequently.

I know there is no real answer. I just have days when I feel totally overwhelmed and isolated by it all and it helped to write it down today.

[CLKD]

Keep letting us know how you feel    how close do you live to the Home?  Will that influence how you cope?  What was over whelming U the most?

[DottyD68]

Carehome is 12 minutes away. I think it is easier to deal with when you live hours away (like my siblings) because you physically can not visit easily/frequently and therefore it is easier to switch off from the situation/reality.

I don't really mind visiting per se - she is no longer as combative as she used to be. It is just utterly depressing seeing the state that she is in and she would hate to see herself in. It all just seems so sad, pointless and relentless.

[SundayGirl]

We're in a similar situation with my MIL. She's been in her dementia care home for the last 3 years too.

Since being in the care home she has deteriorated mentally but has put weight on as the staff are constantly dishing out tea and biscuits between meals. She now refuses to walk so is very often in a wheelchair. She no longer recognises anyone and thinks that my husband (her son) is her brother and is always asking about their Mum and Dad. She's also now incontinent.

We're very much alone in this too as her other son lives on the other side of the world and rarely visits. Well, he was here quite a bit when we were selling the house just to make sure he got his cut of the money.

I agree, it does all seem pointless and sadly there's only one escape route in the end. We keep wondering how long we'll (all three of us MIL, hubby and me) have to endure this and the only sensible answer is - how long is a piece of string?

At least we know that she's in a safe place with people watching over her constantly.

Sending you hugs Dotty.

[bombsh3ll]

It is really hard and terrible to watch.

One thing I would do is maybe speak to her GP and the home about the fact she is in the terminal phase of dementia and make sure everyone is on the same page re end of life care.

In many cases a person's (and family's) suffering is prolonged by the well meaning administration of things like thickened drinks, artificial feeding, antibiotics for pneumonia, IV fluids etc when it would be kinder to let them pass on during the next illness.

Also don't neglect your own health - it is great that you are exercising but if you have persistent back pain that's not getting better it should be checked out.

[DottyD68]

Thanks Bombsh3ll

I wouldn't wish it on anyone. I think the duration of the deterioration is like torture.

Following her TIA episode we have recently completed a Future Care Plan which details all the stuff you mentioned, so her GP and Care Home know that we just want her kept comfortable without trying to "fix" anything. They also identified an issue with her heart but, at 91 and in her current condition, there is no option to intervene, which I think is  in her best interests.

I think the latest set of events has really focussed my mind about what is around the corner and caused this recent bout of anxiety.

I am getting my back checked out and getting some treatment. It comes and goes so I am trying to get it sorted so it hopefully doesn't become persistant and is nothing sinister.

[DottyD68]

Hi Sundaygirl,

So sorry to hear you are in this situation too. It has a such profound effect on everyone involved. People think of dementia as a loss of memory but it is more far-reaching than that. I never imagined how challenging it would be.

When she first went in the home Mum put on weight for the same reason as she had lost so much weight at home, despite having carers and me trying to manage her nutrition. Constant food in the carehome helped with that. Funnily enough my Mum still recognises most people most of the time and is quite articulate, when she actually does speak, but her comprehension is very slow (think of cogs whirring very slowly), doubly incontinent now and short term memory is shot amongst lots of other things. It is actually amazing how she does keep going.

Thank you for your hugs and sending some back. X

[CLKD]

How R U feeling ?

[DottyD68]

She was very grumpy yesterday, refusing to eat. However I managed to feed her some ice cream which she enjoyed.

I think my anxiety is compounded because I am due to go away for a few weeks (planned since last year). Still plan to go but have many conflicted feelings. I spoke to the carers again yesterday and they are totally supportive as they know we go on a trip every year and say this could go on for months. Also spoke to Alzheimer's support who said exactly the same and that I need a break. My rational mind totally agrees with them, I just need to feel more comfortable with it. I think I would feel happier if I had another family member living local to fill the gap in my absence (and maybe that is the root of all this?), but I haven't so I need to get a grip.

So many conflicted feelings. Such an awful disease.

[SundayGirl]

You need a break Dotty. It probably goes against the grain but you need to be slightly selfish and put yourself first for a while.

I know you'll feel really guilty about not visiting due to your mum not having anyone else to visit her. But, in this situation, one of the positives (totally wrong word but it best describes it) of dementia is that your mum probably won't realise that she's not seeing you as regularly for a while.

I'm sure that if anything were to happen that needs your presence, the staff would be in contact.

Your mum is lucky to have you. In MIL's care home, there are very rarely any other visitors.