Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

Reading about the different types of dementia online, I would put it under the same bracket of FTD. It's not memory loss based. It's all odd behaviours and emotional responses and other executive functioning things.

I do reckon dementia.

I have no idea what's going to happen regarding housing. My mother made a will but she never discussed it. More than likely she would have willed the family home to one of my brothers who lives abroad. Her son's were always her favourite and that's shining through now.

If she needs care I know the family home will be considered an asset to pay for care. I will likely be allowed to continue living at home until she dies anyways. After that, what will happen is that the person who the house was willed to, he will likely take out a loan perhaps to pay the nursing home charge on the home. I don't know what will happen. Hopefully I will have my own place my then.

I am not angry or even sad. I am disappointed and petrified. I feel it in my gut and soul that there's something just not right and I am disappointed how I am consistently let down.

@TheBroonOneAndTheWhiteOne it is difficult to know. I think DB & I are both guilty of seeing what we want/expect to see.

To me, DM is no longer there. She didnt recognise me on the rare occasions her eyes were open. In fact a lot of the time when her eyes were open she seemed to still be asleep: mouth open, snoring.

DB still sees DM as being there. Says she enjoys the various things he provides to entertain her. Says they have had conversations about XYZ.

I sometimes wonder if we are visiting two different people. Maybe I'm too boring so she sleeps through my visits and livens up for DB.

I have some stuff captured with pictures and videos and I considered sharing it to my siblings abroad but I likely won't. I know them. I think the sister in law might cause some drama and feel horrified at the very idea of me filming my mother. I did consider sharing them to family but I won't be doing that any more. I don't think that's the answer.

I work full time. I just find everything so stressful. Sometimes my mother has outbursts of anger that makes no sense and I have to turn around and go to work and pretend everything is ok and put on a smile and fake it when I am dying inside. Every day is different. Sometimes she can be okish.

My mother always had a domineering personality when I was younger. But I don't think these behaviours were there years ago. I think there were issues going back to about 2017 and 2018 with her personality getting out of control.

It's only since about 2021 I am thinking on the lines of dementia. I wasn't aware that she was snooping in my room when I was younger but it's something I just observed over the past 4 years approx. It is newish.

I loved with her when I was younger and then I lived away for a few years and I am back home again now. I think there was always some element of a controlling and domineering personality but it's way out of line now. There's a lot of stuff now that is new. The OCD is definitely new.

I will have to explore options about housing and get away.

A few weeks ago she was haragueing me about helping her with a bill. I was helping her but I was trying to figure out the best way to pay it and I needed support from am advisor. She wasn't able to accept this or helpe and she got very angry and snarly and started shouting - 'my house any MY PROPERTY - just pure nasty controlling dominance and a dirty temper tantrum from her because I was submitting to her request under her timeline. She wanted it done NOW. She wasn't able to accept what I was saying. She was just horrible and no comprehension about the housing situation. Where am I supposed to go - under a bridge or into a coffin. She was just fucking nasty. I have helped her in so many ways. She can't even use the internet or her mobile phone and needs me to help her and then throws those cheap trashy words at me.

I have a document on my tablet typed up with the years of observations and troubling and odd behaviours. I can't even write in in a notebook or she will root and snoop and find it. So it's typed on my tablet and it's electronic so I can maintain some privacy about it. If she was to find it she would never be able to accept it. She has no idea or awareness of what's happening to her.

To make things worse I think her own mother was silmliar in her old age. According to my mother she went crazy, she had dementia but it was mild because she never forgot. Those were my mother's words.

I think that is just a red flag towards FTD because she FTD can be behavioural based and not memory loss based and according to Google there can be a genetic compotent to FTD. This just isn't talked about in the family. Maybe it's no know.

To make things worse again. I googled an uncles name. It's not a common name. He appeared in court a few years ago for petty stealing. How come they can live so far apart for so many decades but they both end up doing similar behaviour? Only my mother steals plus size underwear from me and my uncle was caught in public stealing and went to court. The word disinhibition comes to mind. They can't help themselves from stealing other people's belongings when other people have their backs turned.

I just strongly suspect FTD and strongly suspect it's running in the family.

@TrayofRoses That sounds tough. My brother also claims mum can't have dementia because she doesn't forget things (other than getting muddled over words). Her behavioural changes are not the same as your mum, but definitely very noticeable for anyone who knows her well. I also recognise your description of a 'loop' of activity. With my DM it's often gathering/checking her belongings (especially her phone and various glasses) and/or going to the loo. If I go to take her for a medical appointment I know I need to arrive to get her ready at least an hour before we need to leave her house because when I ask her to put her shoes on she will first want to check her phone/glasses and have a wee. Once she has done that, she'll say she needs to check her phone and glasses again (it's not that she forgets where they are, she can go straight to them) then for a wee again before she can put her shoes on. Sometimes repeated several times and sometimes repeated again a few times after she has her shoes on. If I try to rush her or try to make her go without checking/going to the loo she does it anyway but slower and says 'you'll just have to call and say we can't get there in time and we'll have to go another day'.

Only a year ago she would have been ready waiting by the door with her shoes and coat on ready to jump in the car as soon as I got there.

I've requested a ct scan, colonoscopy and endoscopy.
She had polyps removed a couple of years ago...
Dr "did she?"
Me "yes, you have her notes in front of you.."
🙄🤬

@Raven08 it is shocking isn't it, you have to be there advocating the whole time otherwise they don't look beyond the end of their noses and miss things that are staring them in the face.

Thank you, so much for your replies. I think you guys are right. Get out and look after myself and do not become part of her care plan. That's definitely not what I want for my life.

Here I am doing my best, my brothers all living their best lives abroad completely oblivious to what I am going through at home and I was trying to do the best that I can. When I discovered my mother was snooping and stealing from my room, I put a lock on my bedroom door and there they are living their best lives abroad while one of their wife's critisises me over me locking my door. Who do they think they are to do that? They can come home and help me if they want that. When they do come home, they do work at home but there's many drinking and touring days too. It's me still bearing the brunt of a lot of stuff. My mother waits until they are gone to often temper tantrum and shout at me due to having a change in her living environment and routine. Complete outbursts like a toddler.

I am so sorry to read this. They really do become like children don't they. The way your mum behaves is like a toddler getting ready for crèche but you can nearly reason with a toddler.

I am familiar with that loop you are writing about. It's different for every individual with dementia and probably unique to each person.

For my mother, often whenever I come home after work, she would be sitting in her chair watching a soap opera maybe. She would be filing her nails. Every evening. Then she will pause during the nail filing and turn to her surroundings and just start touching and feeling things and the whole entire thing goes on until bedtime.

There's definitely something neurological going on with my mother.

Oh I am so frustrated.
I did my visit to MIL and as expected she resisted everything I suggested. She says she never leaves the house so rails at doors not necessary. Since Wed she has been out front door and up street and out of back door today today to look at daffodils. She tells me this like…what are you going to do?
Then I phoned Adult SS because she was kind of receptive to a fall alarm and they told me she contacted them for a review because she is running out of money! This is just not true, but she is convinced she has no money, and despite me telling her she has savings, she just says that’s for the GC no matter how many times I explain it doesn’t work like that. Plus she owns her own home.
I do not know if this is cognitive decline, stubbornness or just not understanding.
I so want to phone her back, (have already had daily phone call today) and question her, but I don’t think this would do any good.
when I phoned SS they had all my details and knew I had POA, but did not think to contact me to ask about money? I know it’s not their fault, but I’m just so struggling with all this.

It is dreadful. They too easily forget that the person in front of them is an actual person with a history (including medical). They default to bland, convenient diagnoses.

So far to date about my mother, I began having concerns in 2021 but at first I didn't believe my own suspicions and put it to the back of my mind. As time went on there was more and more behavioural and emotional issues and more and more things.

There's no doubt in my mind that there is something happening.

It's only really recently when I began to realise that she is likely experiencing sundowning in the afternoons. I think.

Just this past weekend I observed a memory lapse from her. There were two other incidents of memory lapses from her since November.

There's definitely something happening with her.

I wonder should I notify my brothers abroad. Maybe set up a WhatsApp group with them.

I would like to see the family home being signed over as gift to anyone of us. To avoid it being used as payment for nursing home care. But she will never ever accept this idea from me. Only from my brothers. Then she will likely only want to will it to one of my brothers who lives abroad because they are her favourite. It makes no sense signing a house over to someone who's not even in the country. Or will I just wash my hands off this and let it slide into a scenario where the home will be used to pay for nursing home fees. I really think one of my brothers should be coming home to support me. This isn't for one person alone.

@TrayofRoses there is a strong risk that signing over the house to someone would be viewed as deprivation of assets. Local Authorities are alive to this sort of thing.

Also, being pragmatic, you want your DM to be self funding. This gives you choices about where and how your DM is cared for. Not all care options are equal.

If a person goes into local authority care it will be anywhere they have space.

It's so so so hard. I think they can understand a lot.

Did you try writing your incident into ChatGPT and ask for it's assistance in how you could try and manage the situation?

I can remember a few years ago finding a leak in the kitchen and my mother was refusing to address it. She was refusing a plumber. I asked her to minimise the use of the sink until it was repaired and she did the very opposite out from pure filthy spite and she would look sideways to me as if to say 'i'll show her who's boss'. We lived for months with a leak. In the end I had to book a plumber and not say anything to her. On the morning her was due to call I went outside, took a fake phone call and came in and told my mother that I got a call and the plumber is in the village and he will be with me in 5 minutes.

It was shocking what I had to do to get a leak fixed and it took months. It really shouldn't have been that complicated. That was before AI and that was the only way I knew how to deal with the situation. Just book a plumber and not say anything to her.

My understanding is that there is a time on it and they can go back I think 5 years. Maybe if the house is signed over this year (doubtful) I am hoping she won't deteriorate that much where she won't need a care home.

There isn't a time limit. It's whenever a need for care could be forseen which would apply now for your mum. You often see incorrect advice on Mumsnet because people get confused with inheritance tax.

You suspect dementia.
Thats called deprivation of assets and its fraud.

@TrayofRoses there is no time limit. What they are looking at is intent to avoid paying for care.

It isnt just paying for a care home, it is also paying for carers who come to the house. This can start a lot sooner.

Thank you for all your advice and help and I won't suggest it any more to anyone here or in real life. Thank you.

Just spoke to mum and apparently shes having a contrast mri tomorrow (I'm assuming bowel?)

Well, that's a move in the right direction.
OMG but why is everything so difficult?

Agh I thought we were moving to a smoother patch but DF just admitted to hospital with low heart rate and here looking after DM. Gawd knows if I will make it to my job on Wednesday.

@rookiemere can you frame it as you have to attend work on Wednesday, without question - if you were absolutely unavailable for elderly relatives, no questions asked, then they'd have to get on without you.

It's only one day and you've only just started this job. It's important that you're reliable.

@TheBroonOneAndTheWhiteOne the issue is I don’t know if DM can be left on her own overnight. I got DH to contact social care to try and find some options tomorrow but we also don’t know how long DF will be in for. The care home we have selected can’t take her in before April . It’s all such a mess and I have to try not to feel angry with her because it was entirely predictable.

DH is understandably not prepared to stay on his own overnight if there is toileting involved. Need to have the conversation with her tonight.

The house is foul despite the cleaner having been for 3 hours today but they like her so I am
not going to do anything about that.