Struggling with frail elderly parents at war

[Moira_1610]

I hope it is ok to post this. I live about 70 miles away from my parents both in their nineties with health problems. My father has dementia although undiagnosed formally and has heart issues which make him very immobile and also suffers from incontinence. He will only wear pads at night and sometimes forgets that too. If my mother tries to remind him he gets stroppy.but the washing load is horrendous for my mother. My mother is basically his carer but she has very bad arthritis which affects her mobility and is clearly suffering from depression. My husband and I visit every week sometimes more, but we have issues too.
I am waiting for my second knee replacement and surgery to manage a second melanoma. My husband has a heart issue and is also waiting for surgery.

The trouble is that my parents have always argued fiercely and probably should have separated some years ago. There is no tolerance between them and I get the brunt of it all as I did as a kid! I'm 66!! But I do recognise that to some extent they made their own choices.

I have involved social services and carers do visit to help my father but that isn't right, I have had so many conversations about going into care or her own flat with my mother and have followed through only to be stopped by her as she changes her mind and stays with my father. My father will never go into care willingly. My brother lives around 250 miles away from my parents and cannot cope with the high emotions that I see every week in person and on the phone in between visits.

I have sought counselling to help me and it helped but it expensive, I have suffered breakdowns in the past.

I wish that when I leave them I would not worry or get upset but I can't.

This may all sound self pitying but it is just so difficult to carry all the issues. My husband is great with my parents but he worries me as he is waiting for surgery and can't do anything much. Our lives are really tense and overwhelming.

I know there are no answers, but just sharing this helps.

Sorry for being a pain!

[bowlingbun]

Hello, welcome to the forum. If you read through other posts about elderly parents with dementia, you will see that your father is going down the usual path, I'm afraid. What is the GP doing? Do they put up a united front with "officials"?
Sometimes, it is only when relatives withdraw to some extent, that anything actually happens, which is very wrong in my opinion, but that's the way it is.

So first step, get in touch with the GP - you could write a letter so he has all the information you have, about the current situation. Even if he hides behind the patient confidentiality excuse, he still has a duty to listen to you. If he hasn't visited recently, suggest a visit along the lines of doing a home visit to "their most senior patients".

Explain that you are about to have a knee replacement - I've had two - but use this as the excuse to withdraw from the situation for a while. Ring mum, but don't visit. You need to take things quietly. Ask Social Services, in writing, to keep an eye on them. Whether they will, or won't, depends partly on where you live, but at least alert them.

Consider asking the GP to arrange a visit from a community psychiatric nurse - CPN - making it clear that their actual role should be kept vague. The Practice should have a "Continence Nurse". Is she involved?

I've been a multiple carer, and it's very difficult. At one stage all four parents were ill and disabled, and our son has severe learning difficulties. Don't ever expect dad to agree to any residential care, it will never happen. Dementia has robbed him of sufficient reasoning powers. Does mum use a tumble dryer, easy wash sheets? Does she put a "draw sheet" under dad at night. I doubt if she will ever actually make the decision either. My own parents relationship wasn't ideal, they would moan about each other but always stay together!

Are Social Services doing anything at all for them at the moment? Have they both claimed Attendance Allowance? Dad should have exemption from Council Tax on the grounds of "severe mental impairment".

[jenny lucas]

Hi, just to say that it does sound like the only way to 'resolve' this issue is for your dad to move into residential care specialising in dementia, and for your mum to move into some kind of supported living flat, near you, designed to minimise the negative impact of her arthritis - without her becoming totally reliant on YOU, of course!

However, it will probably take some kind of health crisis to trigger your dad 'going into care' since he won't volunteer (and his dementia means he sees no reason for it, has no problem with messing the bed, etc etc etc.)

That said, it might be helpful to you, I think (speaking as someone who grew up with parents who, logically speaking 'should never have married each other'!) to step back from your parents' relationship. The term 'co-dependency' between them springs to mind! Your mum is clearly 'getting something out' of her marriage, even if it's just to assage any 'guilt' she might feel at 'abandoning' your dad, but also maybe to feel useful and necessary...

However, although you say they always 'warring', and how upsetting it is, and especially to your brother, you know, to THEM it may not be upsetting! Does your mum 'answer back'? If she is totally cowed all the time, and your dad hectors and bullys, well, these days it's called 'coercice control' and the 'browbeaten' wife thinks it's all her fault, and pussyfoots around not wanting to 'annoy' her husband etc etc. BUT, if, on the contrary 'she gives as good as she gets' well, that might just be their natural temperaments! There may not be anything intrinsically emotionally unhealthy about it - just that you an your brother are 'quiet types' who don't like all that 'high drama' - but some folk FEED on high drama! They love it, and feel life is dull and boring if there isn't some going on!

Now, of course none of the above may apply about their marriage, but if it does, do accept, please, that you will never achieve your goal of them 'getting on' together - because that isn't what they want from their relationship.

However, now that your dad is developing dementia, and your mum's physical health is worsening, alas, things do have to change, even if not directly because of their tempestuous relationship!

[Moira_1610]

Thank you for your replies it really helps!

The points you make are very valid. Some of them I have tried but I must try and put a different perspective on the situation.

It is good to know that there are others in similar situations.

I try to recognise that they have chosen their relationship and when I am feeling ok I can do that but not always.

Many thanks

[Elaine]

Hi Moira and welcome to the forum. That is an awkward and distressing situation for you, especially as you and your hubby aren't in the best of health yourselves.
One thing is for sure unfortunately - it's only going to get worse. One day, in the not too distant future, one or both of them are going to be in desperate need of 24 hour care. I think you need to start planning for this. Decide whether it would be better for you if your parents were much closer to you so that you could visit frequently or would you and they be happier if they remained in their home area?
Either way, you need to start researching Nursing Homes and visiting them if you can. This is so that when the crunch comes, often on the tail of some emergency like a fall or a hospital stay, you will have an idea of where they could go to be looked after.
In the meantime an updated Needs Assessment and hopefully an increase in Care provision might help to keep them going for a while longer.
Do they get AA? If not that benefit could perhaps pay for someone to come in and do that washing for your Mum.
I wonder if they would agree to some respite? A week of Mum being looked after in nice surroundings might persuade her to make up her mind and perhaps Dad would find that it wasn't so bad. Could you sell it to them as a 'holiday'?
The situation has come to the point when what they 'want' (to carry on managing in their own home, in good health and active) just isn't possible and what they 'need' has to take precedence. Your needs also have a great bearing.
You have to start thinking along the lines of what is best for them, which is unlikely to be what they want. If Dad can have a diagnosis of dementia then he will be deemed to have diminished capacity and will not be able to refuse help. If Mum is still capable then what she decides to do, even if not very wise, is up to her. However you should point out to her that her decision affects you too and may result in you not being able to help at all.
I hope Mum isn't planning to have dad move into a Home while she moves in with you? Don't go down that road in your present state of health. Disaster.
Wishing you well
Elaine

[bowlingbun]

Whenever they move, wherever they move, it MUST be somewhere they can live for the rest of their lives. Make sure when the time comes, it is somewhere that has "nursing" beds. Definitely start looking now, so that when a crisis arises, maybe next week, next month, or next year, you have a plan in place. Good homes have waiting lists.
Think about whether mum would want to stay in her home area, or move nearer to you. Perhaps talk to mum about that when she is on her own? All other decisions will depend on that first one.
Inevitably, the question of money will arise. Make sure mum at least, signs a Power of Attorney in your favour, if she hasn't done so already.
Are you familiar with the charges involved in nursing homes, around £1,000 a week in my area. Depending on their finances, they may get some help. More information if needed.
You are about to have a change of role, when your parents become your "children", unable to make good decisions any more. Do not, under any circumstances, jump in when there is a crisis and make decisions that you regret for the rest of your life. Come back here as often as you need, ask whatever you want. There are many of us who have been through similar problems with our own parents.

[Scally]

Hi, and welcome.
My parents are also in their 90s, and have similar conditions: my dad is wandered and incontinent, and my Mum, whilst mentally alert, has arthritis, high anxiety and is totally controlling.
Amazingly enough they seem to get on OK, which is just as well, after 70 odd years of marriage and six kids.
They have live in care, and this is vital to keep them in their own home. They live 350 miles away from me, but I have other sibs living much closer, so I keep in touch mainly by phone.