My parents are sleeping in chairs in the living room

[Pigeonangel]

And I don't know what I'm supposed to do.

I live very close and visit often. Always have done, am happy to. They're good company and have been fantastic parents and grandparents. When DH was terminally ill, and subsequently died, I honestly don't know how I'd have got through it without them.

That was only 5 years ago, they were there constantly for all of us, helping with house and car repairs, running errands etc. Until they hit 80 they were amazing sprightly older people who could do anything - furious at the suggestion they might be "vulnerable" during lockdown 🤣

How things change. In a matter of months they've both had health issues that mean their mobility is badly affected. Until recently it always seemed to be worse for one at a time and they're a great team so got by supporting each other, without asking or wanting much from me.

Now Mum can shuffle a bit with a frame and Dad is unable to walk at all. Last night they both slept in chairs downstairs. Mum suffles about to get food, do some cleaning and bring him a bed bottle etc. She managed to do a roast dinner for them both at the weekend, although I can't believe for a minute that would have been safe.

Mentally they are both totally with it, the house is perfectly livable (ie not dirty, if not practical), they seem OK from a personal hygiene pov, and are insisting they don't need anything from me or social services, they slept well last night and can manage.

Am I supposed to just leave it at that? I'm feeling very overwhelmed. It's just me with DH gone, my DC live away and DSis is also several 100 miles away but has lots of opinions on how Mum and Dad should behave.

I don't know what to do.

This was very similar to my situation with my elderly parents who also refused help BUT definitely needed it. Some older people won't stop driving way past the time that they should stop driving. The mind is forever young but the body tells a different story. Health professionals will convince your parents that they do need help. You MUST contact outside agencies for help. If your parents are not able to access their bedrooms they need help.

If they don’t want to do something there isn’t much you can do. My gran was like this and it wasn’t until a hospital admission where they determined she couldn’t go home and her declining memory that we were able to get her into a lovely home which she then enjoyed.

However I’m sure your parents wouldn’t want you to be worried about them so I would go about it from that angle. If they are not going to add a bed downstairs and can’t get to their bedroom at night I would ask they they change to recliner chairs and I would add a basket of blankets to the living room. I would explain it will allow you to sleep at night knowing they are comfortable and without those changes you will be stressed and upset. I know it’s using guilt but you’ve got to use what you have!

The cooking thing is difficult if they won’t accept help, could you batch cook if they would accept some portions of food from you that is easier to manage?

I still think working on getting an OT assessment, rather than jumping straight to buying stuff, is a good idea. Accessing expertise is usually more efficient. If you want to use us as an example, you can - dp, his sister and to some extent I were all worried about dp’s mum after she was widowed and they had lots of ideas about what might be needed. I pushed dp to suggest an OT first, she agreed, and the OT was able to tell her that she was doing very well. The only thing the OT suggested was another grab rail outside the back door, and to take out a couple of rugs that were a potential risk. It gave dp’s mum a lot more confidence and she felt protected from worried bossy children! Obviously your elderly people aren’t doing quite that well, but an OT coming in ‘who’ll take your side against us Mum’ was worth every penny.

this is a very important point. If it is the OP who will be expected to step in and facilitate her parents care after a crisis, it is not at all unreasonable of her to want to mitigate the crisis in the first place. Aside from the human aspect of wanting her parents to have the best quality of life possible under the circumstances.

i think an issue with “capacity” is in how it is assessed and the topic under question. DM was perfectly capable of expressing her preference on day to day issues like what she wanted to wear, eat, TV channels to watch. She was also very clear about wanting to live at home. She sounded very plausible, and could manage many of the questions in the dementia tests, and troubleshooted me removing the plug from the bath to stop her flooding the place to work out a solution that meant she could still fill the bath and flood the place. But was unable to work through hypothetical situations, like what would happen if she fell. That’s when she suddenly got deaf and ignored the question, or just waved her hand vaguely and muttered about managing somehow.

I imagine that’s roughly where OP is right now - some high level cognitive decline in her DPs that mean they are unable or unwilling to take a step back and assess their lives as a whole, but enough cognitive ability to “manage” on a daily basis.

Absolutely, and there’s a grey area between diminished capacity and denial. If you are the one who has to step up and clean up the mess if/when something goes wrong, you do have the right to over-rule your elderly parents when they are refusing to accept reality.

@Ileithyia you do have the right to over-rule your elderly parents when they are refusing to accept reality.
But you actually don't have the right unless they have been formally assessed as not having capacity. All you can do is withdraw your help, and the guilt associated with that if you love the very stubborn elderly person can be immense. As wiser people than I have said it can come down to a choice between feeling resentful because the elderly person won't accept outside help and guilt if you don't provide the help (and guilt too at failing to enable them to see reality. )

OP, you might find the elderly parents board more helpful than chat as there's a weary community of people who have trodden or are stumbling along this path.

@Ileithyia you do have the right to over-rule your elderly parents when they are refusing to accept reality.
But you actually don't have the right unless they have been formally assessed as not having capacity. All you can do is withdraw your help, and the guilt associated with that if you love the very stubborn elderly person can be immense. As wiser people than I have said it can come down to a choice between feeling resentful because the elderly person won't accept outside help and guilt if you don't provide the help (and guilt too at failing to enable them to see reality. )

OP, you might find the elderly parents board more helpful than chat as there's a weary community of people who have trodden or are stumbling along this path.

I had a community nurse phone me last year and have a go at me for DM excersising her capacity. She cooudnt get into the house as DM was locked in as my niece had to go to work and DM had refused a key safe. Niece had two choices Go to work and lock the door or leave it unlocked all day so anyone could wander in.

got to leave it open for her to lock 🤷🏼‍♀️

The community nurse didnt arrive until the afternoon.

Couldn't agree more. My father managed to deny Stage 4 cancer, now that takes some doing.

I suspect the whole " Do they have capacity" thing is just a way of fobbing off/ signposting/not spending.

The average person knows nothing of this world until they are plunged into it.

You have no right to over rule anything. No right at all.

Maybe not by the letter of the law, but I thought back to when my parents were younger and managing their own elderly relatives. They expressed some fairly strong views about aging and care. About how the older person should accept they’re “getting old and past it” and need help. And that’s all my DB and I can go by in guiding our decisions for mum - her opinions from 30 years ago. So morally we couldn’t leave her essentially rotting away in her bed at home, alone with 4x a day care visits. And the home that mum is in is very like one she chose for an elderly aunt and really liked. She sometimes asks me “am I the old bugger now?”.

But as @Ileithyia said, there is a massive grey area in the middle where their cognition has declined a little bit, they are in denial about the reality of their age and physical condition and clinging on to the only bit of control they have over their lives which is to say “no”. You (general you) want your elderlies to be safe and well and sometimes you have to over-rule them to ensure it. Like the suggestions of an urn-type kettle with a tap - my parents had one and wore it out because DF had a permanent cup of tea on the go. The borders of the grey area will vary from family to family which is why there is such a variety of opinions in this thread. My conscience is clear that I’ve done the best thing for my mum, DB is in agreement and we also both agree on what our late dad would have said about the situation.

Maybe not legally, without going to great lengths to prove capacity is gone, but you can be consistently and gently insistent. I have worked in care of the elderly, I am not talking from a position of ignorance.

My Mum went through a period of sleeping in the chair. It really is not good for you. The body needs complete rest at night, also her legs swell if she does not have a full night of being horizontal.

Cooking does not sound safe.

I know from experience how hard it is to get our stubbornly independent parents to accept help. Can you call adult social services to ask about steps towards getting an assessment? Or you could say to mum that you are going to call for an OT assessment to see if they have some suggestions as to how life could be made easier.

It might be the time to ask if they would like to give you Power of Attorney over money and health - before they get unwell and cannot make their own decisions. Also it is helpful if they sign to give you consent to speak to GP on their behalf. Both those actions have made my life easier when dealing with elderly parents.

Take care, it is hard

And? so what?

@Onmytod24 What about neglect?

Perhaps raise your concerns as a safeguarding issue with your local social services. I believe that you can do this anonymously.

This this this!

As a community physiotherapist I cannot tell you how important it is to sleep in a bed, not a chair, even a recliner chair.

I get that they are mentally competent but do they fully understand the risks of ignoring the difficulties they are facing instead of seeking support?

Firsty, sleeping in a standard chair will indeed absolutely cause oedema (ie swelling, get them to google lymphoedema, which can be caused by failure of first the circulatory system and then the lymphatic system and this should scare the life out of them).

Oedema can cause repeated celullitis (skin) infections, these infections can cause severe symptoms including flu like illness and confusion, possibly requiring IV antibiotics and it's a vicious cycle, the more damaged the lymphatic system becomes with each infection, the more you get infections....

There's absolutely an increased risk of DVT with poor mobility, and DVTs can cause pulmonary embolism and possibly death.

Sleeping sitting up will also likely lead to pressure sores and even more loss of range of movement, in the worst case you can get joint contractures where the joints fuse in that position and cannot be stretched ever again.

Recliner chairs rarely if ever go completely flat so are not the same as sleeping in a bed in terms of pressure distribution and you cannot move as freely or turn again leading to sores.

Please explain this to them and encourage them to arrange for a GP and or Physio and OT to visit to at least examine them and see if there are any reversible issues and to suggest some support and equipment, even if they choose to turn this down.

It sounds like self neglect, but what could be driving it? Are they trying not to be a burden, to not spend money on carers etc.

It sounds like they need beds downstairs and a commode at the very least plus a plan of who will empty said commode.

All the best.

A Safeguarding referral will result in a visit to determine if they have capacity to make decisions and if they agree to the Safeguarding process/ an assessment. It isn't a shortcut to 'make' care happen against people's will.