Advice needed for elderly parents who can no long look after themselves

[IbizaToTheNorfolkBroads]

I posting on behalf of a very good friend who has asked me for advice, but it’s not something I am at all familiar with. I am sure it’s not a unique situation though.

Is there any help/service available for an elderly couple who are no longer able to look after themselves?

Her parents are in their 80s. Mum has dementia, Dad has a heart problem which causes him to sporadically lose consciousness and fall. Dad has been mum’s carer for a few years. He is now struggling with this, and his own health, and ought not to be driving (but does. He hides his car keys so friend can’t take them off him). They live in their family home of 50+ years.

Friend lives 75 miles away. She is single and has no children. Worked full time, but has recently dropped to 4 days in order to manage her own health issues, but is now spending this time, and weekends, travelling to and looking after her parents.

She has a sibling local to her parents, who was in a serious RTA a few months ago and is dealing with the physical and emotional aftermath of that. Appears to have had a complete breakdown. Unable to engage much with parent care other than cooking a meal once a week. Due to go back to work soon, but looking unlikely. Sibling is married, but spouse is spending a lot of time away looking after their parents.

Realistically, it would seem they need to move into residential care, but they refuse to even consider it. They want to stay in their own home, and expect their children to look after them. Friend is exhausted from 2 x 150 mile trips a week, her own health problems, no down time etc. Sibling just doesn’t have the capacity. I’ve said the situation is not about what her parents want, it’s about what they need.

How can we improve the situation for everyone involved? They had a social services assessment last year when Dad broke his arm, but parents chose not to take the support offered then. Friend thinks that they are no entitled to another assessment, but i think they must be as the situation has changed, in that the carer’s (dad) health is now declining.

If you’ve got this far, thank you.

What can be done to help everyone involved?

They need another assessment from SS and your friend and sibling need to make it very very clear to SS what they can and can’t do.
Would they be able to afford to pay for help?

Does she have power of attorney?
if not she needs to get that sorted pronto.
She can also apply for attendance allowance- non-means tested, and use that to get a carer in under the guise of a "cleaner" at first.
And report to DVLA obviously before he kills someone.
How bad is the mum's dementia?

Very similar situation. Yes she needs to get another needs assessment. I did this by submitting a safeguarding referral to Adult Social Care. She also needs to step back and be very clear what help she can/is able to provide. It is difficult but whilst her and her siblings prop them up they won’t be inclined to accept any other side help. Is there anyway they could get private carers in? Even a few visits a week to clean etc will help as there will be a ‘pair of eyes’ in the house if there are any concerns which can be highlighted.

Unfortunately all we’ve managed is a carer going in 3 times a week for an hour. My abusive alcoholic mother generally refuses to let them do anything but it is a bit of respite for my father from the daily abuse he receives from Mum. Ultimately our issue is that both have been deemed to have capacity which includes making bad decisions. If one party has dementia we were led to believe it would be easier to insist on further support being provided sp your friend definitely needs to keep referring. We’ve had three attempts at needs assessments over the past 12 months with all help being refused but at least they are on ASC radar. We have also raised our concerns with their GP and they have also had visits from a well-being/care for the elderly nurse.

Oh yes. We also have POA. It helps even if they won’t engage for us to speak to medical professionals about their care and our concerns. My sister also has access to all their bank accounts so is able to keep an eye on things there especially as my Dad has his card blocked at least weekly due to forgetting his PIN.

Thank you for your quick replies, and solidarity to all who’ve been in this situation.

Parents could potentially afford some level of care for a month or 2 without selling their house.

Mum’s dementia is worsening. She insits on cooking all meals from scratch (I guess this is what she can still control) but can’t put a shopping list together. She is mostly lucid, but her moments of not knowing what’s happening, not recognising people etc are getting longer and closer together.

Friend and sibling have legal and medical POA in place.

I will push Friend to encourage them to get another SS assessment, but there are two very stubborn old people resisting outside help!

I’ll also push her to report to DVLA.

Your friend is going to have to get tough and be very clear to her parents about what they need vs what she can provide.

Off the top of my head, things that could help:

SS assessment
Cleaner once a week
Meal / grocery deliveries
POA
Reporting to DVLA

If they won’t engage with these things, she needs to be tough and stop facilitating them beyond what she can cope with.

@IbizaToTheNorfolkBroads very tough situation. Many of us in a similar place. You nailed it with what they want and what they need are very different things. SS assessments are all well and good but if the elderly person refuses to engage with any suggestions it is awful. Yes losing your old life must be difficult but it rarely happens overnight. In my case I would say it has been 20 years of things deteriorating but zero acceptance that they would have done well to tweak a few parts of their life. It is now an utter mess, totally what they ‘didn’t want’ but entirely predictable as they made no concessions be it in where they live or in getting their heads around life changes as you age.

POA is good especially for finance - H&W not so as whilst they are deemed to have capacity you cannot invoke it.

Boundaries. It has taken me along time to understand how vital these are. Your friend needs to define what she can and is willing to do otherwise she will be dragged down with her parents sinking ship.

Your friend might find it easier to take a step back and have some boundaries if you frame it as building the parents resilience. If they’re very dependent on her and she has an accident, breaks leg leg and can’t drive for a while, catches flu and is out of action for a couple of weeks what are they going to do? Be totally stuck!
Whereas if they already have a cleaner or carer coming in it’s much easier to increase that and there are more people looking out for them.

That’s actually a really good point.
Anyway, I have passed on all your thoughts and advice, but the situation has moved on. Dad was bluelighted to hospital on Friday night. No one was able to go with him, so Friend is hoping this will show how vulnerable he is. On call social worker has been in touch re respite care/carers for Mum, but none available this weekend. SS also arrannging a mental capcity assessment (is that the right terminology) for Mum next week. Friend spent a long time ringing round her mum’s friends/church etc to find people to call in on her whilst her dad is in hospital. More social services next week. Hopefully things are coming to a head enough to force some intervention and change.

We had a similar situation with our in laws a year and a half ago - fil diagnosed with dementia and mil not coping. They lived an hour away.

Things came to a head and we said we will help you but only under certain conditions. Their son was undergoing treatment for advanced prostate cancer and could not be on hand 24/7. You move to into assisted living nearby and we will help when we can. Mil is now in a care home nearby with dementia and fil still lives in assisted living. They are self funding. Both sons have power of attorney for health and finance which helped immensely,

We took the car and keys from fil after his dementia diagnosis and his inability to find the assessment centre to determine if he was fit to drive. And also his inabiltiy to renew his own insurance online.

The parents are likey to just go back to their old ways as soon as Dad is home hospital.

Friends needs to a SS assessment for parents and be clear them that she lives 75 miles away so can’t provide any help.

Friend also needs to have a frank chat with parents outlining what she is currently doing and what she can provide in the future (should be less than doing now) and that their needs are only going to increase.

Dsis and I refused to be part of the care plan. SS tried to sneak it in but we pointed it out and had it removed. We still did lots and visited often but to have a chat, cup of tea etc. friend must be realistic and stand her ground. Someone needs to do some caring but it doesn’t have to be her

Thank you for your ongoing advice everyone. Ironically, Friend is a HCP and refers her patients to SS as necessary and is well aware of the for a care plan, of which she intends to play no part. Dad still in hospital. Mum still being “popped in on”.

We got much more help with persuasion from (a) a local care firm that provided in home care and later (b) a care home manager that specialises in dementia- all of whom were more used to dealing with stubborn elderly people than we were. They came and had a chat with my mil and were able to talk her round when we couldn’t.