Overwhelmed by the situation with my mum

Sorry if this isn’t all focussed on my health issues but my issues are all entangled with the whole situation.

My son was born thirty years ago with birth defects and then diagnosed with a progressive genetic disorder and then my husband was diagnosed with the same disorder. Then followed twenty years of dealing with that and I had anxiety and reactive depression and endocrine problems and was very unhappy.

Then after my son moved out, got married and moved away (we are on excellent terms and speak on the phone often) I had an full autistic burnout and found out I was a masking autistic female.

My husband and son are both autistic but being male it was more obvious.

Now my widowed mum is nearly ninety and I’we have her to care for now. She lives about fifty miles away.

She is also an undiagnosed autistic person and she has always been a very difficult person to deal with. She will be 90 next birthday and lives alone in a massively too big house crammed with about five times as much furniture as it needs and she had a stroke about five years ago that she concealed from us until it was too late to do anything to prevent the damage it did to her eyesight.

I think she may have had another stroke since then that she also concealed.
The joke in our family was always that if she got dementia how would anybody be able to tell because she was so eccentric/awkward/difficult/unreliable in the first place?

It isn’t so funny now because I am having to try and make that judgement call and I am floundering.

I have been doing all her shopping (online for the last year) and paying her bills etc for years and managing her finances.
She still has access to her bank via phone banking but she hates the phone and limits it to making transfers now and then to keep us topped up to cover her expenses.

Financially she is fine. My father died a long time ago and he was the one who did everything and so she had a steep learning curve to manage for herself and never really got the hang of it and now we’ve (my husband and I) have stepped in to fill the gaps he left.

The hardest part is dealing with the lying and her general attitude.

We have LPAs for finance and health but we have not enforced anything nor got access to her bank accounts yet as we’ve tried to be as light touch as possible. But now things are getting past the point where we can leave it like that any more and I am dreading it.

We were shielding for over a year as was she so we hadn’t been into her house for a year apart from at the beginning when my husband went in to do a necessary electrical repair. She likes it like that - we’ve spoken every day on the phone and continue to do that. We visit physically now about twice a week to try a sort out the Sleeping Beauty undergrowth that has developed and to try and get her house into less of a health hazard.

But her house is a tip. Today we found mouse droppings all over her sofa. We have been on and on at her to keep the rodent repeller switched on - she’s had various ones for decades and they’ve always worked - but one of her old lady friends told her it might catch fire and now she won’t put it on. She’s been throwing food into the garden outside her back door and it was disgusting and she had a backlog of bin bags in her garage because she didn’t want to put the rubbish out.

We’ve sorted out assisted refuse collections now but my husband is having to ring the council at least once a week because every week they forget to collect either the recycling or the food bin or the main bin bags.

I think she should be in some sort of facility now - she can’t see properly and she can’t cope and she won’t work with us to make her home safe and clean. At the moment it isn’t even in a state where a cleaner could come.
She had a cleaner before Covid but her cleaner is ancient and infirm and did a terrible job. We said she should have a new one that does the job properly and she can have the old cleaner round as a friend once they have both had their two vaccinations (my mum is still waiting for her second jab as it took a LOT of persuasion to get her to be vaccinated) but she had a hissy fit and said she doesn’t want any strangers in her home. Which I understand but my husband and myself are not well ourselves and she is actually more physically fit than we are but she just won’t clean or tidy up. She can’t see without her specs but she won’t wear them because she says they ‘make her look old!!!’ She’s almost 90 :whistle:

Sorry for the very very long post but I am in a complete tangle and I just can’t see the woods for the trees.

I am type 2 diabetic and have been controlling my blood sugars very well (they’ve been at normal levels) for two years by making keto food choices. Emotionally I am in a mess. I am just about coping to make sure we all eat properly and stay safe but I have no energy to do anything else because all my energy is taken up with making sure everyone is cared for according to what they need. Even though my son lives hundreds of miles away and we haven’t seen him for three years we still manage him a lot with moral support and ‘life coaching’ type stuff and of course financial support. He will always need us to be there for him and his wife is a good match for him but also needs a lot of support and encouragement to cope with things.

I just feel like I might collapse any minute.

I have had a CPAP machine for six years and it is one of the ones that have been recalled by Phillips and I’ve been getting weird numbness and tingling in my hands and arms. So I’ve been worried about that. I haven’t slept in a bed for ten years - I am trying to retrain myself into lying flat but it is hard going.

I do a lot of exercise now - using a VR headset and so apart from the weird hands symptoms I am physically more fit and healthy than I’ve been since my twenties. But I feel very overwhelmed with the situation with my mum.

Hi Overwhelmed,

I’m not surprised you chose that as your username.

I think it’s time you contacted social care about your mother. Explain to them you live too far away to help, have health issues of your own and that you have safeguarding concerns about her house and are concerned about her mental capacity to take care of herself.

Does you son’s wife have autism too? It would good if they had some additional moral help as well as from you - is there a local branch of the National Autistic Society or similar?

Would one of those beds that are adjustable e.g. https://www.livewelltoday.co.uk/sleeping-rest/adjustable-beds/c-26/c-143?keyword=adjustable%20beds&gclid=CjwKCAjwlYCHBhAQEiwA4K21m6Vskvp425RAYKmCTPYtjRlHxRTh6Vuif4qV2XZkkWB0vGKSF7Z_qxoCG0gQAvD_BwE help you learn to sleep in a bed again without too much discomfort/ difficulty breathing.

Have you got a replacement CPAP machine? What does your doctor say about the tingling?

Melly1

Hi Overwhelmed,

In your life you’ve had a lot to deal with. And now your Mum expects you to everything for her. Its an impossible task. Social Services could come and pay a visit and look around the house. And if they think its too dangerous, dirty for her to live there. They could suggest putting her in residential care. Your father did everything like you say and now she expects you to do the same. No wonder shes got a mice infestation, and rotting rubbish bags left anywhere is considered a major health hazard. There will come a point where she wont have any choice in anything. And things will be taken out of her hands. No doubt she will protest and complain, but its tough at the end of the day. If you do get carers in to help her they could help you get the house in a better, liveable state than it is now.

Hello, Overwhelmed. There are several issues here, but to me the overriding one is that she is living in accommodation which is too large and which she cannot manage. I would suggest seeing ways towards moving her in to some type of sheltered accommodation for the elderly. This could also help to ease some of the other problems.

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Overwhelmed initiated this topic on 3rd July 2021 and last visited the forum on 8th July 2021

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Update on situation.

Nothing much has changed but I am coping better. I applied for PIP and got it and we applied for Attendance Allowance for my mum. This meant we have been able to buy adaptive aids for my mum and we are finally getting a new cleaner sorted out for her and we paid a garden clearance company to sort out her garden. Most help has been an online camera system with alarms so we can check on her during the day if she doesn’t answer the phone. In the meantime the house is okay and with the new cleaner we are optimistic for improvements. Her usual cleaner hasn’t been able to work for a while due to ill health and we have worked out a cleaning rota for keeping things good enough for now.

I am a lot more cheerful and optimistic - the extra help from the PIP and Attendance Allowance has made that bit of difference and I am getting my hormonal issues sorted out now too. I bought a new CPAP machine and it was much better than the old one so my sleep improved and it is amazing how much easier it is to stay resilient when one has had plenty of quality sleep.

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