Late stage dementia - care at home?

[BillyoftheValley]

Is this really an option? Really interested to hear from anyone who has done this and whether they would do the same again...

My Mum is 10 years into an Alzheimer's diagnosis, still cared for in the family home. Dad is main carer (but limited in his ability to support), with around 30 hours of private support going in. I'm about half an hour away but with young kids / job, the usual.

Mum is doubly incontinent, mobility getting more limited and I'm guessing swallow function will be affected next. It feels the disease is now progressing more rapidly and we're moving towards a time when she will need 24/7 care.

My Dad is massively resistant to Mum moving into residential care. He's not in great health himself on several fronts and I have a gut feeling that he may not live much longer (although might be totally wrong!). I worry that forcing a move for my Mum into residential (if that's even possible) will damage our relationship irrevocably during what may be his last year or so of life. Which is what keeps bringing me back to care at home...

I'd love to hear from anyone who has done this: the good, the bad and the ugly...

Sorry for the essay and really appreciate any thoughts!

Hi op have social services done a care assessment??? If your mum's care is declining and she needs 24 hours care then unfortunately a care home might be the only option. Sending hugs x

The alternative, if you/they can afford it, is a private live in carer.

I work with people with dementia and they often thrive (I know it’s all relative but hope you know what I mean) with a move to a good care home. Relieving the carer responsibilities from your Dad could quite possibly do him good too.

which professionals are involved in your mum’s care? Can you ask the SW for a care needs assessment for your mum and carers assessment for your Dad?

Sorry your family is dealing with this.

My MIL was kept at home till the end, but DH has a lot of siblings and they all did their assigned shift so she had 24 hour care. Paid help was 8-5 on weekdays.

It was a colossal effort.

I know someone who has their parent still at home, with live-in carers providing 24-hour care. It’s very expensive.

Thanks, everyone. Really appreciate your thoughts and kindness.

My parents had care / carer's assessments a couple of years ago but you've reminded me it might be time to revisit this.

I do find the lack of professional involvement surprising and a bit concerning. Mum was discharged from the local hospital dementia service back to the GP, and Social Services in their area are reluctant to engage with self-funders. I should probably insist a bit more.

I'll start to explore options with local agencies for ramping up the home care in the short term while I work out how best to persuade Dad on the residential option.

Sending my love to all who are walking this road.

That must have been an enormously stressful time - I'm sorry for what you all must have been through.

It's also a bit of a wake-up call for me. We don't have a large family so I think soon the only options for us will be 24/7 home care (which we can manage financially for around 18mths) or residential.

We knew someone who insisted on caring for his wife with fairly advanced dementia for some years. They were both elderly and somewhat frail. . It was more or less OK until he fell and broke a hip and they both ended up in different care homes.

The old chap told dh that he wished he’d made the move well before - he was having a life again. Sadly he died only a few months later.
He’d had hardly any help though - not for lack of funds, we gathered - but he was protective of his wife’s dignity - didn’t want outsiders to witness e.g. her incontinence.

We did it for my Dad. My Mum was main carer but I have 3 siblings and we are all within 20 mins. Dad had carers 4 times a day in the last six months plus an overnight carer to help Mum if he needed anything during the night.

However it depends on how your Mums dementia affects her. Dad was placid and compliant but not everyone is.

Mum is relatively healthy and mobile, still drives and was able to take on a lot with help and she was determined to keep her promise to keep him at home.

It is possible but takes a team effort. I would not want to do it on my own. In your case I think more external help would be needed.

This is something that happens quite frequently. It's lovely that they want to care for their loved ones but I've seen this scenario when they end up having a fall or they become unwell with stress that they end up also requiring care.

It's such a sad situation.

It’s very expensive. [live in home-care]

People say this but live-in care at home isn't necessarily more expensive actually, especially if you only need one person a week - usually rotating after a fortnight, who gets time off to sleep etc., because other family members are also helping fill in those gaps. It depends on things such as whether there are behavioural aspects to deal with that might require 2 people, and how much care and attention she needs overnight. Make sure you lean on your GP, District Nurses, Occupational Therapy service etc., you may find you are being left to your own devices if things seem to be under control with family support but you do need to push. You might be able to supplement a full time carer with a part time drop-in second carer, or sitting service, rather than having to have 2 people on duty, if it's borderline.

There are many considerations including who is going to pay, and whether that money is liquid or tied up on a house or other longer term assets. You MUST get some advice from a financial advisor as there are various solutions, some of which you can only access via a professional. They need to be qualified for care planning specifically.

Of course, Alzheimer's ought to be covered by the NHS (it's called Continuing Healthcare) but good luck with that!!! (ie, hell will probably freezer over first). I do know someone who managed to get the extra 1-to-1 care in their parent's nursing home (for Alzheimer's) covered by the NHS, although the rest of the standard level of care is coming from her own assets until they run out.

Sometimes a good care home can provide a much better physical care and therapeutic environment, but that isn't always the case. For example, we have a care situation in our family, and consultants of various disciplines have commented on how much better it is for this person to be being cared for at home both physically and mentally with tailored care, than anywhere institutionally.

By the way, both Care Annuities and Continuing Healthcare can be used to pay for care at home, I've been told not for both at different times, but that information was wrong. This is why you need professional advice.

totally understand.

What aspects of her care do you feel aren’t being met? Or won’t be met with the current level of provision ? 30 hours a week is a lot of specialist care. In what areas do you feel her care is lacking? Is the house well adapted in terms of space / access to bathrooms / other adaptations etc?

Social services will not get involved as long as a. Your dad insists on keeping her at home and that he can cope b. You continue to provide private care and c. Her needs do not become unable to be met at home.

My MIL is doubly incontinent, immobile, dementia and Parkinson’s. She is in a nursing home but tbh I can’t see any reason why her care couldn’t be provided at home IF all the necessary equipment and carers were provided there. She needs two people to move / shower her, a hoist to move her, etc. Her food is liquefied and fed through a straw, she drinks from a sippy cup. She doesn’t respond to anything much. She is kept clean, fed, dressed and undressed, medication given correctly and some entertainment. That’s pretty much it: it’s not rocket science.

who’s paying for the current carers?

My grandfather was cared for at home until the end, where we had two live in carers, both needed their own rooms expected separate bathrooms, with family members covering the two hour daily breaks. Some where amazing, fantastic with both grandparents, others removed most of the valuable antiques, stole all of grandmas art work, often her cash and just left him in front of a screen and did the bare minimum. That was with an relation living in the house and 4 of the children visiting most days. By the end her had a grade 2 bedsore, and would have probably died months earlier in a care home as my aunt wouldn't have kept convincing the GP to prescribe more antibiotics to keep the shell he'd become alive.

With my grandmother, she also had dementia, we had a core of 3 carers on a monthly rotation, she was becoming incontinent, but they were more ladies maids keeping her company and taking her out, either in her chair or just a shuffle around the garden, she didn't want to leave the house for a home, which they enabled, but she died recently before the dementia took total control.

It's a lot of work for the family, 5 children, 15 grandchildren all involved even with live in carers, if you have the space and the money, we were paying £750 a week. We were driving 100 miles each way to cover weekends, others were in 2/3 times a day, constantly relying on carers to inform us what we needed to order, I think there would have been better care in a home. Oh and him escaping a few times and being picked up by the police/ambulance/kind passers by. We got through, over 10 years, a 2-3million paying for the care, both had good pensions, but they were no where near enough.

The fairly recent film The Great Escaper, starring Michael Caine and Glenda Jackson, shows a couple living in a care home together because she needs 24-hr care although he doesn't. (He 'escapes' to go to the D Day celebrations in France.)The film is based on events that really happened, which made me wonder if there might be somewhere in your area that could offer this kind of care.

Whatever you do will feel wrong; but you can only do the best you can in the circumstances in which you find yourself. I think it's important not to let yourself be overwhelmed, and not to over-commit at a cost to your young family.

Warm best wishes.

My mum (also Alzheimers) is being cared for at home by live in carers, as she is self funded it's a good bit cheaper than care in a home. For me it has the added benefit that I know someone also has an eye on my dad because like you I have all the other children/pets gubbins going on a distance away.

We initially used Elder having a lovely lady do 3 weeks on then with an alternate for a week to give her a rest (although they only 'work' set hours in the home, normally having a couple of hours off mid afternoon and my dad is in charge overnight). Now we have the same lovely lady but on a private basis and she brought in someone she trusted as her alternate.

Not all carers are the same quality but at least your loved one is home and you can have oversight of their care and if you don't like someone then you have the choice not to ask them back into your home.

Mine stayed home til the end. Once she was unable to get up, or leave her bed it was actually a lot easier. She had private carers four times a day, last call at 10.00 at night and back at 7.00 am. Hospital bed, mouth care and the tv on quietly. It was expensive, but we had promised her she would never go into a home. District nurses came in every day as she had leg ulcers to dress. She died very peacefully.

I was going to say exactly this .

My Dad was my Mums carer, but in the end she went into a home. She wasn't in there long as she died shortly afterwards, but he really couldn't care for her after a certain point. Her health and functions declined quite rapidly in the end and would come in stages.

My mum has been 'late stage' for the past three years and is in a care home. It's completely the right decision for her (as she was becoming a danger to herself and wouldn't really let anyone help her) and my dad as it's given him his life back. She's had no concept of anything for the past few years, she didn't even know home was home when she was there so that made the decision easier.

The key advice I’d give you is don’t take anything on you can’t do for the next 15 years without an hour off.

The big myth about eldercare is that it ends when the person does - absolutely yes, but that doesn’t mean they’re dead. That can take another decade, especially with Alzheimer’s.

Don’t be fooled into thinking as the disease worsens the person gets weaker - often the psych symptoms are staggeringly full on, with escapes, violence and ranting that lasts for hours.

It’s incredible how frail old people can instantly transform into lightning-quick assailants or bolters - no one knows why, but it’s very real if you’re dealing with it.

Caring for dementia patients is a hell of a lot harder than caring for terminal cancer and no one asks you to do that at home for year after year.

Alzheimer’s patients are incredibly difficult to look after in the phase before they’re mute, bedbound, motionless and incontinent- the final stage that can last seven years.

Eldercare is often bad for people - extreme caring, which is nearly every dementia case, is extremely damaging.

You’re untrained, inexperienced and busy - get the professionals in.

Thanks to each and everyone one of you for your kind responses. I'm sorry for all who have struggled with these issues and really appreciate you taking the time to share your experiences and learning. It's given me real food for thought.

Someone upthread mentioned that you feel like essentially whatever you decide is wrong and I think that pretty much sums up where I'm at. I need to accept that there is no 'right' decision as such because there's no happy ending, just muddling through the best we can.

But I do need to take some decisions and this thread has really helped me to see that and also the limits to what I can personally provide - thank you. I'm going to take some time to revisit home and residential care options in the local area then will speak again with my Dad.

Sending love to all.

I do wonder whether at some point my Dad might see that a move to residential care is a good thing for him. He is an exceptionally determined person though and the process of getting to that point will be distressing to both of us.

I worry that if we manage to make the move for Mum he may die shortly after which would mean that our last few months together would just be him angry at me. But I need to learn to live with that. As another poster reminded me, these situations can run for much longer than you imagine and I need to act in everyone's interests.

Such a difficult thing to go through.
My mum is about there. She has live in care. She's in pads; hoisted bed to chair/back again; bedbathed; she can still take meds orally and feed herself most of the time. Other times she needs to be fed/has med patches. So the level of care needs is really high.
If you can afford it, it is do'able. A couple of things to bear in mind: the extra costs of running a house (at tropical temperatures!) on top of the care costs; and house maintenance issues, especially once carers are living in - breakages, blocked toilets, damp ingress from gutters, boiler breakdowns (always in mid winter!) etc...
On balance, I'm glad I kept mum at home as that's what she wanted when she still had any capacity. Now she doesn't even know who I am, it makes me look back and think I'm glad that in her last cogniscent years, she sort of got what she wanted (obviously she didn't want carers at all but life isn't perfect!!). But I must admit it's almost killed me at times. (I've been brought back to sanity by this board a coupe of times in the last few months)
Good luck with it all.

There was also a lovely old chap who visited his wife every day at my DM’s (dementia) care home. He’d done his best at home, but told me that eventually the stress and strain of e.g. 3 wet beds every night meant that he collapsed completely with sheer exhaustion. Had to get his wife to bring him the phone to call 999 - and it took ages to get her to understand that.

When the emergency services arrived he couldn’t get to the door to open it, and he couldnt make his wife understand how to do it, so they had to force an entry.

I'd absolutely agree that anything decided can be viewed as the wrong decision. I had district nurses having a massive go at me for not liquidising home made casseroles a week before mum died. Made me feel like shit. And I wasn't with her when she died. But life isn't like a Waltons episode.

This is a really good question and I think my main dilemma!

We currently have two private carers going in but they of course have their own lives and issues, and I sometimes need to provide back-up care (particularly now that Mum is incontinent), which is a constant source of worry given work/kids commitments. There are local care agencies we could use but these two carers have worked with Mum and Dad for years under very difficult circumstances and I deeply value their love, care and commitment to both my parents. The local agencies have significant recruitment issues (like everywhere I guess) and I know local families where care is provided by a stream of different temp carers with varying degrees of success.

The current carers do the standard morning / lunch / evening but also take on some additional cleaning / errands and take Mum out for walks etc.

Mum went through an extended phase of significant wandering, agitation, paranoia and aggression (towards my Dad, me and the carers). This was managed with hospital input and as the dementia has progressed we seem to have come out the other side of that to a certain extent. Mum is still mainly miserable but more placid, sleeping more and generally (not always) accepting of personal care.

My Dad loves to cook dinner for Mum (although he can't really manage anything else - fair enough), and she loves her cats and to spend time in the garden (she can't articulate that but I can see from her reaction). She also has a great relationship with one of the carers in particular. So her home environment still provides some comfort. On the downside: my Dad struggles to understand the extent of her dementia and becomes frustrated with her (often challenging) behaviour - understandable but also worrying.

My worries are particularly around later evenings (after the last carer visit), weekends (when only one carer works and I need to cover more often) and whether she is generally safe given that my Dad now spends a lot of time sleeping. I do also worry about my Dad (and Mum) as although the aggression has diminished she is still occasionally violent towards him. Gah - when I write it down it doesn't sound good!

We've had an OT assessment and made some adaptations to the house (electric bath seat; toilet rails, locking away any dangerous objects, locks on doors etc) but I think are reaching crunch point as my Mum's mobility is decreasing. If she stays at home, we need to convert some of the downstairs space to bedroom with hospital bed / shower room with potential for hoist etc. This is obviously a significant commitment. Financially my parents are fortunate to have the cash accessible to do this work and provide 24/7 home care for up to c 18 months.

I guess I really struggle to know how much care is enough...
Sorry again for the essay - it really helps me to think things through!