PILs have cancelled carers and are now asking when we can visit

[StillNiceCardigan]

FIL is in his 80s and has Alzheimers and MIL is struggling to manage. We live 4 hours away and visit regularly but can't be there day to day. I'm devastated that they've cancelled the carers they had agreed to after one visit. Help me feel less angry at two 80 somethings who have just made life considerably more difficult for everyone.

When the dementia becomes more severe, outside carers become inevitable.

Right. That’s where OP’s parents are now but don’t want carers. Instead they want regular help from OP/DH.

@Mirabai But OP can say no?
The issue was probably the carer and type of care being offered.

Yes, in most couples one ends up caring for the other. Very few people refuse to help their spouse when they start getting ill. The question is at what point do you involve outside carers?

The problem is, though they make decisions that affect their DCs without taking us into account. It's very very hard to know that your parent is in pain or distress whilst you're telling them I can't come, I'm at work, or I have other priorities and commitments. It's the ongoing emotional impact and also it's not even possible to concentrate on work when you know that's going on. I'm not the only one who feels like my career, friendships, interests, and health have been severely damaged as a result of my DM's choices. We should just be able to say no, but in practice that is very very hard and has a different sort of negative impact.

@SierraSapphire I know what you mean but I can't help reflecting that some of what you cite could equally be said by parents bringing up their offspring.
It seems to me that as people age their world narrows , they become more conscious of impending death and they just don't have the capacity to care much about things outside their immediate focus.

Even if that “decision” is that their adult children should care for them?

'OP, I’m sorry you and your husband are in this position. Unfortunately it takes for an event such as a fall or hospital admission for a couple like your in-laws to realise that they do need support.'

Yes, sadly the dfil may fall or get a uti and require hospital care. His discharge will then be delayed as they don't have home care in place so a short term place in a care home will be arranged. This may then become permanent if home care is still refused as the mil won't be able to cope when he develops mobility and continence issues.

It, sadly, is what happens when elderly parents are adamant that they can cope. There is so much denial. I've assured our dc that when the time comes I'll follow their advice, the last thing I'd want is to cause them stress.

Carers are there to help yet so many view them as an interference and taking away independence when they are there to actually keep folk independent at home for longer. It's like when a frail 90yr olds won't stop driving as they don't want to lose their independence, just get a bus or a taxi they're still independent yet without the risk of killing anyone.

I just wanted to add that those who care are entitled to restbite of up to eight weeks per year. The elderly person can go into a local home (order of St John or suchlike). If they have money they will have to pay towards it. I didn't know this until the month before my father died. I was on my knees caring for him. The care coordinator in our GP surgery told me. My father could have gone in every six weeks for a week to give me and my family a rest. Social services keep this very quiet. We are in the south shires.

The respite can be incorporated into the support plan if it is deemed to be an effective method of support.
However, the regular six weekly stay is not so current now. This is because residential homes often cannot keep a bed for respite use.
This can mean the cared for had to experience different environments which if they have dementia can be really unsettling and increase their presentation both in the respite and when they return home.

This may be deemed to not be in their best interest in accordance with the Mental Capacity Act guidelines.

And again, even if the cared for lacks capacity and the best interest decision is made for them to go to respite, if they refuse they cannot be legally removed from their home unless they are presenting in a way that means they need a Mental Health Act assessment. This would only be if they were presenting a serious risk to themselves or others. Obviously a person would be very unwell and in need of hospital intervention rather than transfer to a residential home.

I know this is so hard on the carer but needs of both parties need to be met lawfully.

It could be but some people just refuse care point blank

I wouldn’t say most no. And with varying degrees of success and struggle. Too many elderly people who are caring for a partner acfually can’t cope with it. It impacts their own health and can lead to earlier death ime.

Alzheimers is a very difficult illness to care for and it’s too much for many elderly people.

OP is at the point that outside carers are needed as MIL is struggling and so she she/DH. And they’ve refused.

@AvrielFinch can I ask if my mother’s decision that she will not allow carers in, she will not allow a cleaner in, she will not allow a gardener to tend a large garden with 3 lawns, but she cannot manage it herself, she will not go shopping herself, she has cancelled the window cleaner…..so all of this now falls to me and my siblings - no discussion took place by our mother and her demands for the food she will eat basically means she expects us at her behest 5-6 times a week. We had no say in it it simply happened because she had capacity and decided that was what she wanted. Fair do you think?

I wondered when the "stop infantalizing the elderly" would be mentioned.

Their children have to step in to sort out decisions for them that should have been made a long time ago. Burying heads in sand, putting off the inevitable until it all goes catastrophically wrong. Its alright saying oh I'm not going into a home, wheel me to Switzerland, we'll stay here in our home miles away from all family forever and then expect everyone to jump and step in when it stops working.

When they start to behave as adults and make rational decisions about the future - thinking not just of themselves but of their children. I know its difficult but its also for the benefit of your loved ones.

You need to stand united and firm and not do this.

My mother has a carer once a day. We do not live near her and for many reasons, I would not care for her. My brother is fairly nearby but has insisted he only visits once a week, which I think is right. My mother always wanted to get rid of the carer but knew she did not have alternatives. She has got used to having a carer now.

@I8toys thank you. All we hear is ‘I don’t want that’ so as reasonable people we ask ‘what do you want’ - in short we get no response but it is apparent she expects US to do everything. She is completely capable she just doesn’t want to do anything as it means she gets us in the house. But she gets a miserable poor version of us because we are just being taken for fools and feeling bad that she ‘can’t use the washing machine’, she can. She can’t go shopping, she can and does as neighbours tell us. A wise aunt of mine has suggested I in particular step back as she knows the impact it is having on my health and relationship- I live an hour away so 3 hours at mothers doing jobs, cleaning washing, shoppping etc is actually 5 hours away from my home. Does she care. Nope.

@BlueLegume what would happen if the windows remained uncleaned and the grass uncut , and no shopping or meals done by yourself?

@BlueLegume

I would advise you to talk to a counsellor. You are not your mother’s spouse, or carer. She will use you until you are run into the ground and then move on to the next person.

Im telling you this could go on for 10 or 15 or 20 years.

You have to get strong with your boundaries or you will be crushed, mentally, physically and financially. Get support from a good therapist and step back now and don’t be guilted into anything more than you can manage.

Many old people want what they want, and they will get it.

You must look after your health.

Same goes for the OP. Best wishes to you all.

Corerct. Spoken as someone who had a grandfather in the exact same position!

@Thisoldheartofmine understand the point. Simply put one of my siblings would have to do it. DSis and I are retired so us really. DB seems to have taken on more and more work commitments so he always has the ‘I’m in London’ or ‘I’m working away’ card to play…which is fair enough.We don’t have that ‘luxury’ but equally we are both busy retirees, sadly having to let our well planned retirement hobbies fall by the wayside.

🎯

My dad passed away last year. He was the lovliest soul ever but my mum moaned she couldn't cope. Wanted respite for him and carers. He got the carers but was too late for respite. Since then she has developed dementia (rapidly) and after many fights with SW is now in a care home. She is very engaged and lovely to the staff yet when I visit she doesn't even say hello. All she tells me is that I do nothing and am useless. I do everything for her and did for 4 years when my dad was ill. She thinks she is fine and screams at me. I do her laundry and have tried to make her room nice but to no avail. I leave in tears after every visit. Anyway, point is, set boundaries and stick to them. Every aspect of my life has suffered and she has turned into the nastiest, most selfish version of herself. I was heading for a breakdown but have pulled back and blocked her interfering, trouble making family who only ever criticised me. Now my life is much calmer at least for now. Don't let anyone judge you and if they do who cares! It is a thankless position and I wish you luck and love.x

@BlueLegume I would say no. It does not really matter if the windows are not clean or the grass not mowed anyway. If you are confident she can get food I would leave her to get it. If not I would say to her I can help her sign up for a weekly delivery of frozen meals she can cook and food she can eat straight from the fridge such as quiche. I would offer to help her hire a cleaner, but if she says no I would leave her to it. When I visited I would only clean anything that was an active health hazard like overflowing kitchen bins, everything else I would leave.
I have experienced this. FIL refused help and ran his daughter ragged whilst refusing carers. She gave him a date when she would step back and everyone else said they would not be stepping in, but they would help him find carers. It took 10 days for him to cave as he really could not manage without any help.

You are choosing that. I’m not saying it’s an easy choice to not help as she wants it but you do have a choice. Don’t do it. Between guilt and resentment choose guilt every time

@AvrielFinch @TorroFerney absolutely sound comments. I naively keep thinking we will have a ‘breakthrough’ but every time we visit there are another few things she says she now ‘can’t’ do so you find yourself popping some washing in, she criticises the cycle you pick. You find yourself filling her freezer with really good ready meals - she decides she doesn’t want to use stuff from the freezer. You provide lovely ready meals and some batch cooked made by my sister and some soups by me. They are ‘too salty’ or ‘too bland’. Lovely Waitrose easy cook meals, too salty. Lovely mini Higgedy quiches - ‘revolting’. I am going to step back after a thankless day yesterday where I did a few loads of washing even demonstrated how to use the machine, she knows how and I have added step by step instructions she chooses not to so she can play on the ‘look at my tatty underwear’ - it is not tatty at all but she does love a visual. I took some magazines of things she might like, some puzzle books some light hearted fiction books sort of beach reads think Celia Imrie type nothing taxing. All rejected. It really does feel like she expects us , especially my sis and I to basically do everything. She didn’t approve that when we both took early retirement and then went on some long trips. She and DF who was still ok at that point kept trying to get us to take them out a few times a week. They were painful then so even if we did it was just a moanfest. I am going to take it a day at a time and stay away for a while. I have left enough food for around 2 weeks if she uses it wisely. She has always been incredibly controlling but it is manifesting itself completely off the scale at the moment. I do think a day at a time is the best way and perhaps wait for the crisis? I must add other than having lost weight she is in rude health and currently looks 10 years younger than me!!

@BlueLegume It does sound like you really need to step away. I think it is helpful to be clear and open if you can and say from this date I will only do x, y and z. Maybe do a weekly food delivery if she pays for it (do it online from your home), change light bulbs i.e. essential things you need to stand on a ladder from, take her to hospital appointments, help her find a gardener, cleaner and some clubs if she wants them. But apart from that you will only be visiting x hours however frequently. Then you have to stick with it.
A small word of warning, you will probably have to hear at some point her hinting to a medic e.g. in hospital, that you will not help. And have that medic glance at you as if you are an uncaring bitch. You will also when things do get bad have medics wanting you to step up more as it is easier for them than putting care packages in place. You have to just say no and let it wash all over you.