[Misc] Experience of parents or similar with dementia/Alzheimer's living alone

Sorry, this is likely to be a rambling brain-dump...

As per a post a day or two back, due to a family bereavement, we're suddenly in a position where my mum, who has dementia and Alzheimer's is going to be living alone.

Today I feel very worried, actually quite panicked. My sister lives away from the area - with a job and family etc - she comes down as often as she can, but essentially the day-to-day is all on me.

We have a care package of four visits a day - breakfast-ish, lunch-ish, dinner-ish and 9-10pm-ish.

I can supplement that by going in a few hours most days, probably after school drop-off until I need to walk the dog again, so something like 8:30-12:30.

My concerns are wide and varied...

- What if mum leaves the house and gets lost/comes to harm? Mitigation: I hope to install cameras/doorbells that would alert me.
- Similarly inside the home - pretty low risk, I think, but not no-risk. Mitigation: cameras/two-way echo show devices or similar.
- Loneliness / mental well-being - my mum would be spending quite a bit of time alone. Being frank, she likes TV, but a life with mainly TV for company isn't great is it?
- What when I have other things on, or want to go on holiday for a week or two?

The care company tell me they have plenty of people like my mum living semi-independently, which gives me some encouragement, but I'm still very, very worried. I veer from "we've got to try this - it could be OK" to "this is horrible - this can't possibly work".

My mum doesn't have a lot of money and care costs as they are, there's a limit to what I could do for any period of time in terms of paying for additional care or even some company/human presence.

So, please share any experience you have - good and bad.

Horrible situation for you @Bozza, and I feel deeply for you. I was in a similar sort of position with my mum. Although not dementia/alzheimers, she was going downhill fast with frequent UTI's which presented with pretty much the same symptoms. Much of that stuff fell to me to sort, despite mum living in a remote village a county away and me being a non-driver.

What worked for us was a live-in carer/companion, an eastern european girl that lived in the village. Really sweet kind girl. The deal was she got free board and lodgings, a bit of spending money, and instructions to call the family as and when. She had no control over any of mum's finances, our family had power of attorney and household shopping was set up online. There were all sorts of safeguards we put in place.

Might not work for everyone maybe, but worked for us for several years until mum had one fall too many.

Wishing you all good things and peace of mind @Bozza

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Bozza said:

Sorry, this is likely to be a rambling brain-dump...

As per a post a day or two back, due to a family bereavement, we're suddenly in a position where my mum, who has dementia and Alzheimer's is going to be living alone.

Today I feel very worried, actually quite panicked. My sister lives away from the area - with a job and family etc - she comes down as often as she can, but essentially the day-to-day is all on me.

We have a care package of four visits a day - breakfast-ish, lunch-ish, dinner-ish and 9-10pm-ish.

I can supplement that by going in a few hours most days, probably after school drop-off until I need to walk the dog again, so something like 8:30-12:30.

My concerns are wide and varied...

- What if mum leaves the house and gets lost/comes to harm? Mitigation: I hope to install cameras/doorbells that would alert me.
- Similarly inside the home - pretty low risk, I think, but not no-risk. Mitigation: cameras/two-way echo show devices or similar.
- Loneliness / mental well-being - my mum would be spending quite a bit of time alone. Being frank, she likes TV, but a life with mainly TV for company isn't great is it?
- What when I have other things on, or want to go on holiday for a week or two?

The care company tell me they have plenty of people like my mum living semi-independently, which gives me some encouragement, but I'm still very, very worried. I veer from "we've got to try this - it could be OK" to "this is horrible - this can't possibly work".

My mum doesn't have a lot of money and care costs as they are, there's a limit to what I could do for any period of time in terms of paying for additional care or even some company/human presence.

So, please share any experience you have - good and bad.

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My mum is 92 this year, thankfully she hasn’t any dementia or related challenges, what she does have is severe physical disability meaning she can hardly walk or get about the house without the aid of me or her 3 wheel zimmer. I call in everyday for two hours to clean, do things she still thinks she can do somewhat stubbornly and do her lunch, she refuses care and a cleaner and refuses to move from a a substantial two storey house which she only uses the ground floor, i don’t really have any help from my brother so it’s all on me.

She is basically chair bound and only has the tv for company as well, she doesn’t seem to mind that although i’ve now had enough of The Chase after 4 years of this

All i can say is in my inexperienced opinion and of course the possibility of your mother going out etc do try to avoid the guilt, you do as much as can be expected and if she’s seeing you every day and a carer she isn’t going to be lonely

My next door neighbour unfortunately had Dementia or Alzheimer’s. She had carers visiting her once a day for 9 months or so but as a poster mentioned yesterday, I think you will need to research care homes for her longer term needs if the symptoms increase.

Her children mentioned to me, but I’m not sure how true this is, that Dementia and Alzheimers are treated differently when it comes to care costs. It may be worth researching that. Either way and I appreciate it’s a minor thing, but make sure you apply for Attendance Allowance. The forms are lengthy but she sounds nailed on to receive it, but it is not retrospective if she doesn’t already receive that allowance.

I can sympathise …..even with my Dad living with her i had doubts as to whether it was safe for my Mum to stay at home….how well does you GP/Practise know your mother….can they advise as to whether this is practical …if so now how long that is likely to be for….its always hard to get ahead of events and plan before things happen

I presume social services are involved? Have you spoken with them over options from here ……sorry to be blunt but you will only be able to carry on a the ‘’few hours’’ a day (plus all the other time organising stuff…head space) for so long.

I take it you have a POA/health in place?

People who suffer can react in different ways ….my Mum packed up a carrier bag once and left before Dad woke up …we had to get the police out and she was eventually found by a bus stop locally……..had similar incidents..eventually Mum had to go to a care home (not much money either …help via SS)…..against that a friends parent managed at home without such incidents.

I’m guessing you are tearing yourself apart inside right now ….wanting to keep mum at home….but also knowing your loyalty to your own family….

I assume you have been through the AS website back to front

Sounds like you're doing all you can, more likely exceeding that. All options will have downsides, but the current arrangement seems the best in the circumstances -- although note that these do change.
Key feedback is try not to worry, and try to compartmentalise things. You've got too many balls in the air. Make sure you've got releases, eg going to the football, so you're in as good a frame of mind to tackle all these commitments.

South Stand Bonfire said:

My next door neighbour unfortunately had Dementia or Alzheimer’s. She had carers visiting her once a day for 9 months or so but as a poster mentioned yesterday, I think you will need to research care homes for her longer term needs if the symptoms increase.

Her children mentioned to me, but I’m not sure how true this is, that Dementia and Alzheimers are treated differently when it comes to care costs. It may be worth researching that. Either way and I appreciate it’s a minor thing, but make sure you apply for Attendance Allowance. The forms are lengthy but she sounds nailed on to receive it, but it is not retrospective if she doesn’t already receive that allowance.

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…..good point and a sensible one even if its an option that is a last resort……if its going to require SS support then you need to go through them as to what ones will they support….then at least you get the chance to have a look before it all happens.

In addition without knowing exact financial circumstances……its got be to be worth looking if only for respite care

sadly know of two others who lived alone with similar and both went out shopping alone - both got confused and lost - both ended up being picked up by the Police after calls from concerned members of public

both then ended up in care homes for their own safety

sorry a bit negative - is a hard thing to deal with

I can feel the pain and worry from your post Bozza.
First thing, your health is as important as anyone's. So - you need to look after yourself.
Secondly, we are in a similar situation. My aunt and myself (who both tend to worry a huge amount) have a saying
which is worth mentioning "take every day as it comes" and try not to look to far ahead.
Nothing in life stays the same for long. Just bear that in mind. I know that's not easy - but
it is our way of coping.

Just prompted by the previous post, the danger signs are if your mum starts wandering. Then the
police get involved and it starts getting dangerous. My Mum stays at home - and does not wander.

Sorry to hear this @Bozza .
As far as keeping your mum safe at home, start here.https://www.alzheimers.org.uk/get-support/staying-independent/keeping-safe-home

As others have said, contact Social Services and get an assessment of mums care needs. If they are joined up with the NHS you might be able to get adaptations to the house to make it safer for her. Also ask her GP practice if there is a home visit service if she needs it for wound dressing etc.
Apply for Attendance Allowance.

Get PoA registered for financial and care .

Unfortunately, Alzheimers is a one way street - you should research more care packages and residential care which will probably mean selling her house once her savings are used up. The state only funds Alzheimers/ dementia care when she is down to £23k.

I can't stress this enough - you also need to look after yourself. It's a big burden for you and you will need support from family, friends and networks like The Carers Trust - there's a good one in Brighton and Hove.

Thanks for the replies so far....

Trying to cover a few of the points...

Social Services are involved, as they put the care package in place, and fund it. I spoke to them on Monday, immediately after the bereavement which changes the whole setup for my mum. They told me there are essentially three options...

- Keep things as they are. Four visits a day is the biggest package they do.
- Family fund top-up care. As above, there is a limit to what we could on an ongoing basis. £30/hour very quickly adds up.
- Care home. My mum wouldn't agree to this, which I said, but they said they consider family wishes and take professional guidance, presumably on risk etc.

We're trying for the first one, but putting in additional mitigation.

A care home is an inevitability, sooner or later, and I will begin that research just as soon as I can stabilise the short-term situation.

Power of Attorney - no. Long story, and hindsight etc. I know there is the costly and time-consuming deputyship angle, which may be what we have to do, but I have decided to try my mum with PoA. I've read a lot about this and during her more lucid/coherent times, I believe she would understand the implications and make a fully-informed decision.

That time isn't right now, however, as she has a (yet another) UTI, which makes things even crazier. She doesn't trust me at all right now, to the extent she won't let me prepare food for her as she thinks I'll poison it. Once the antibiotics work their magic in a few days, that should improve.

This was why I regarded covid as a god-send as it enabled me to work from home permanently, and not leave Ms Cat on her own when she started to deteriorate.

If I hadn't been able to work from home I would have had to stop working to look after her. Eventually it got to the stage where I could barely leave the house, "just in case something happened".

I also thought about cameras, but they weren't a practical solution.

It might work for a time, but....

It depends on how severe your Mum's condition is, what she can still do (and not do) and how quickly she is deteriorating.

Other factors you need to consider are your Mum's safety if she gets cold callers. I knew Ms Cat was letting strangers in to the house when I was at work. It didn't happen often and nothing bad took place, but you just can't tell. Even a video link wouldn't help much as if there is an incident you wouldn't be able to get there in time. Similarly with a fall or other accident - is she capable of ringing for an ambulance if she falls down starts and breaks something when she is on her own?

If she is prone to wandering and does get lost, you are completely screwed. You can't lock her in as that is a fire risk (and probably illegal imprisonment or whatever the actual terminology is). There are far too many stories of people wandering off and the next you hear is that a body has been found somewhere.

If you have carers coming in frequently, that reduces the risks but there will be a lot of time when she is unattended, especially a night

Sometimes you just have to admit that you do you best but your best isn't enough and it's time to hand over the responsibility. You can't be in two places at once and you can't do everything all the time without help.

If you are researching care homes at the same time (just in case) you will know that some say they take dementia residents, but in reality can't cope with anything more than mild symptoms so are of little use.

The whole thing is completely shit, and there are no good solutions - only less bad ones.

Does she get personal independence payments? They are not means tested.


Or apply for NHS continuing health care and see if she qualifies


If and when it comes to this.....

@Bozza, if you feel a care home is inevitable, you ought make investigations now to avoid pressured investigations later.

If state placing is to happen, you have limited choice. Basically, you wait for a slot but you can indicated preferred geographical locations. I get that your mum's consent is an issue.

.....

We had a situation with my wife's spinster Aunt (late 90s) who lived in Glasgow but only had Mrs Wz left as a close relative. Mrs Wz spent a lot of time going up and down and she remained fairly independent until she had a series of falls. A couple of times, she went back home from hospital with a care package, but when she fell a third time, we decided she needed to go into a care home. We were lucky that we found a really good one who could take her but it was expensive. She got taken straight to the Care Home from Hospital so it was very much unplanned and last minute, although we had made initial enquiries 'just in case'.

She had a flat in Glasgow and the Care home and Social Services agreed to fund the home until we had sold her flat and then pay them back. It took a few months to clear her flat and sell it, but we then paid the care home and social services back and took over the funding. We asked what would happen if the money ran out, but they said they would take over the funding. Sadly that was never a problem in the end.

She was there for another 3.5 years and although initially not wanting to go, she ended up enjoying the restaurant, TV room and various activities once she had settled. The Care Home was a huge step for her and us, but is something we and she never regretted.

I'm sure you will do whatever is right for your mum and she really is in the best hands. Make sure you get time for yourself and your family.

*edit* and re-iterating Trig below, try to arrange an LPA, we've already got POA on us for our kids

Bozza said:

- What if mum leaves the house and gets lost/comes to harm? Mitigation: I hope to install cameras/doorbells that would alert me.

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Is mum in the habit of taking anything with her, such as a key or bag? I can recommend a tracker. Obviously if she were using her phone, you could track that, but maybe she's not using it anymore?

Bozza said:

- Loneliness / mental well-being - my mum would be spending quite a bit of time alone. Being frank, she likes TV, but a life with mainly TV for company isn't great is it?

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Can you get carers to take her out to places with social activity?

Bozza said:

- What when I have other things on, or want to go on holiday for a week or two?

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Could you perhaps ask your sister to take time off sometimes, so that you can have a holiday? Caring for your mum as much as you do/will do is hard work.

Bozza said:

So, please share any experience you have - good and bad.

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It's hard.

Bozza said:

- Keep things as they are. Four visits a day is the biggest package they do.

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That's the current situation. My step dad, who's been living with mum, is now entitled to 24 hour care because he in serious danger due to his constant wandering. Hopefully that won't be the case for your mum, but 4 visits isn't always the limit.

Bozza said:

- Family fund top-up care. As above, there is a limit to what we could on an ongoing basis. £30/hour very quickly adds up.

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We've been paying a couple of carers £18 / hour. They've taken him out (driving range, garden centre, etc) which we're paid for on top.

Bozza said:

- Care home. My mum wouldn't agree to this, which I said, but they said they consider family wishes and take professional guidance, presumably on risk etc.

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If she's not agreeing, just do your best to keep her out as long as you can. But look after your own wellbeing too.

Bozza said:

Power of Attorney - no. Long story, and hindsight etc.

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We got LPA for my step dad after he already had dementia, but when he was still capable of agreeing to it. If your mum is able to say that she doesn't want to be in a care home, is she definitely no longer able to agree to an LPA? Not having one is a nightmare. We will do one for us/our kids once they're both 18.

Bozza said:

I have decided to try my mum with PoA. I've read a lot about this and during her more lucid/coherent times, I believe she would understand the implications and make a fully-informed decision.

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Yes, make this a priority. If either of you have had a solicitor, try and go in person. Costs more, but worth it in your situation IMO.

Bozza said:

That time isn't right now, however, as she has a (yet another) UTI, which makes things even crazier.

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Understood.

First to say apologies for the essay. My experiences are all of over 20 years ago, cameras/ring doorbells weren’t an option.

Context: my grandmother began to exhibit signs of dementia at about the same time as my mother succumbed to the return of a previously treated cancer. (We perhaps missed earlier signs, putting them down to worry over my mother)

I moved in with my grandmother when my mother’s cancer reached the point that she was admitted to a hospice, the hospice was nearby and it was far easier to just move between two addresses than my own as well.

I had to make some quick adaptations, e.g. disconnecting the oven and hobs, since it was 50/50 whether dinner or items for the fridge would be placed in there (and then switched on) and she would (e.g) begin to boilwash tea towels in a pan and let the pan run dry.

It quickly became clear that she was beginning to need assistance with personal care, I got social services involved, this got carers in 4 times a day, plus meals on wheels. Social services advice at the time was that this should be sufficient, and I was free to return to my own home.

The carers helped, but didn’t cover every eventuality. We ensured that my phone number was written in huge numbers next to my grandmother’s phone, and that she had it on a big piece of card in her handbag and coats. (She didn’t have a mobile)

On multiple occasions concerned locals would find her sitting on their garden walls (she suffered from angina, so would set off out the house and then get chest pains) - this usually triggered a call to me. I have to say that I never once found anyone had tried to take advantage of her, most people are genuinely decent. She often wouldn’t have been able to tell those who’d found her where she lived, or where she was going. (We suspect normally the shops, despite me doing shopping for her and seeing her on an “every other day” basis)

The only really negative experience we had were some Irish individuals who relieved her of £500 and did the worst job of resurfacing a driveway that I’ve ever seen. Her neighbours came home from work and called me, but those responsible had gone by the time I got there, and the neighbours hadn’t thought to take their truck registration.

The other slightly vulturish development was that the Jehovah’s Witnesses began turning up weekly and my grandmother would always invite them in and sit and talk with them. She had always been what I would describe as a “true” Christian, rather than a performative one, and had a quiet sense of right and wrong, whether the JW changed her views at all, I cannot say, my personal suspicion is that she retained her inner views, she was always quick to forgive and slow to judge. She seemed to take pleasure from their visits so I ensured I was present for one in every few visits, just to ensure there was no pressure being applied to her.

My main takeaways for you would be the largely obvious ones.

1. Ensure that significant sums of money aren’t in the house. If you have PoA and can check, a sanity run through of outgoings to ensure nothing’s going out that shouldn’t be. My grandmother’s bank had signed her up to 2 x accounts with a £20 a month fee, for benefits she neither needed nor used.

2. Ensure your number is in her phone (possibly multiple times) and (if an iPhone) flagged as an emergency contact.

3. If the neighbours are known and trusted, talk to them so they’re aware.

4. If there’s a risk of fire, consider getting the oven/hobs decommissioned and/or removing the microwave.

5. Assuming you have got Power of Attorney in place, if not, worth going through the Court of Protection for Deputy status.

6. Get your mum a GP appointment, go with her and ensure you understand her medications, why she takes them, what to watch out for that might suggest something’s wrong.

7. Your mum may not have (or may soon lose) capacity to make routine appointments. E.g. hairdresser, podiatrist, it may be that it starts to fall on you to arrange regular appointments for anything your mum needs but is non-core medical.

That’s what I can remember, I hope some of it’s useful. I wish you and your family all the best. I’m sure you have a great support network around you, but DM if you’d rather talk to somebody who doesn’t know you or your family personally.