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.

It seems as if some doctors and GPs would like to see a reduction in daily living living tasks before they consider a problem for referral. I chatted to her GP twice but it didn't go well. It seems as if they want to see her struggle getting dressed, feeding herself and toileting issues before they consider a problem. She can manage a lot herself but just about. There are some things questionable. Like I don't know if she's buying new underwear any more. She seems to have a limited supply of underwear in her laundry wash every weekend. I do think she is struggling cognitively but a lot of it is masked.

@TrayofRoses it’s hard when you see elderly parents doing things they didn’t used to do. My mum would sometimes put cups of coffee in drawers and close the drawer as if she was keeping it safe. My dad would occasionally get dressed by putting his trousers on over his pyjamas. I also noticed my dad getting really slow at doing things eg when he made lunch of microwaved soup and toast, he would take forever to get the soup, empty it into a jug, put it in the microwave etc. then he would set the table and then realise the soup was ready but he hadn’t started the toast. So by the time he had (slowly) got the toast ready the soup would be half cold.

Both of them were diagnosed with dementia. When I got concerned each of them were given a brief memory test by their GP. Both failed badly and were referred to the memory clinic for a more detailed test. The test was be given an easy address to remember eg John West, Rose Cottage, Eastbourne. Then what is the full date Including year, who is the prime minister, count backwards from 20 to 1, start at 100 and take 7 off, then take another 7 off etc so parent needs to say 100, 93, 86 etc. Then tell GP what the address is. Can you ask your GP to do that test? Or ask her the questions yourself. At the memory clinic my mum had a page of pictures like from baby books and she had to say what they were. She couldn’t name a kangaroo and called the yacht a boat and the owl a bird so the specifics of her vocabulary were disappearing but from a brief chat with her you wouldn’t realise.

The rigidity with food shopping could be because she can’t cope with different food as she can’t remember what to do with it so she avoids new food items. Cleaning the filter every day could be because she can’t remember how often she needs to do it or when she last did it so makes it a daily task to be sure it’s being done often enough. My dad also started wearing his underwear for several days to save on washing which was ‘a hassle’. I also remember my dad completely misunderstanding the Russian invasion of Ukraine. He told me that ‘we are now officially at war with Russia’ and said it so convincingly I had to check the BBC website to be sure WW3 hadn’t started! My dad had heart failure and his dementia diagnosis was mixed dementia - Alzheimer’s and vascular dementia.

Unfortunately, I’m afraid that you are in the situation @TrayofRoses that so many of us have been in. Your parent isn’t “right” but not yet at the stage of being a safety risk to themselves or others. And basically you are waiting for it to get so bad that others, whether it’s your siblings or her GP, will take note.

All you can do is work on things that are in your control and let go everything else. I stopped trying to ensure her house and garden were as immaculate as my parents kept them in their prime. I stopped trying to ensure she ate a balanced diet and aimed for enough calories to keep her going (aka the biscuit diet). No vegetable or fruit passed her lips for about three years. You learn to let go - eg the tumble dryer - does it matter if she tries to clean it every day if it keeps her calm/ quiet/ happy. Only “dig in” on things that really matter like safety - mum complained bitterly that the gas fire didn’t work any more and kept wanting me to ring for an engineer, when I had had the engineer in to isolate the gas fire because she’d not used it properly and left it on unlit, filling the house with gas but she couldn’t smell it.

it is very very hard to watch this decline, and you have to develop skills in distraction techniques like with the online shopping.

i mentioned before that you should ask yourself what you want here. I settled on mum being safe, clean, warm and fed before her move to a care home. Her empty house still has a massive hole in the dining room ceiling where she kept running a bath, forgetting and it overflowed, flooding the bathroom and the dining room ceiling. Several times. It was an ongoing saga and I’ve not recovered enough to get it fixed.

oh and before I go to bed - the pants thing. Could she be struggling with a touch of incontinence and hiding or disposing of the pants instead of then ending up in the wash? I developed a good nose for tracking down my mums used Tena pants she sometimes left in odd places. Usually near a radiator.

Not being able to do those things unaided is the threshold for applying for attendance allowance. But there is medication for dementia which can be taken before they start to struggle dressing themself. Getting the medication was the impetus for me getting my mum diagnosed. I knew she would be terrified of the memory clinic and she was but once diagnosed she got the medication. And by the next day she had forgotten she had been told she had Alzheimer’s so it was all good.

@TrayofRoses my experience was that a diagnosis of dementia only came when DM's CH wanted to apply for DOLS (deprivation of liberty safeguarding).

Another shout out for the benefit of CH over home care: DM now has an air mattress. My visit yesterday was accompanied by her bed gently sighing.

My DF who is awaiting memory clinic also started doing more OCD like behaviour. He was a very rigid personality before, but now it is worse because he has to have everything the same or do things 10x repeatedly to feel like he is in control of his world. It is his way of navigating through the confusion his memory loss creates and managing his anxiety, although since starting Citalopram the anxiety and OCD behaviour has reduced somewhat.

I don't interfere too much with it @TrayofRoses unless it is unsafe, if he wants his desk organised a certain way it is not a problem. The Citalopram was started by the GP because his anxiety and OCD behaviour meant he was overusing his salbutamol inhaler massively which was impacting his heart condition. On the food front I aim for high calorie foods and DF has nutritional shakes to boost his intake.

@GnomeDePlume hopefully she will be more comfortable on the air mattress and they can turn her less. DF has an air mattress at home courtesy of the hospital OT because he is high risk of pressure sores, so it can be done outside a CH you just have to push for it.

Thank you for all of the replies. I don't critisise what she is doing. There are a lot of WTF moments but I don't critisise what she is doing. A lot of have ended up in a document I created to show doctors at some point. I think if she ever needed a hospital any time soon, I would give them the document of observations I have and refuse to take her home until dementia is ruled in or out.

Then there are so many other things that are vague and subtle and haven't ended up in my document. Like I observed her not long ago and she was at the kitchen sink lifting her hands up and down into a tub of water, up and down, up and down - it was like she forgot how to wash her hands. Or she reminded me of a toddler who likes to play with water. She was getting some sort of a sensorial sensation out from it.

There are other incidents that are safety related like standing on top of the work top dusting. It's a falls risk. Another time I saw her staring at the oil burner with a clothes hanger and I suspect she was going to dist behind it with the wire hanger and I was able to redirect her.

It seems as if nobody (siblings and doctors) cares unless police are taking her home. I don't know.

One of the most depressing things is that she doesn't talk to me properly any more. She talks whenever she wants something from me but she doesn't talk to me properly any more. There's no normal conversation from her. She will never ask me things like
'how did you sleep....what are your plans for the day....how is work....how is name (my partner)....how are you feeling'. I get sick a lot. S
There's just no normal conversation from her.

Every day the words that come out from her mouth are:
'did you hear from any of the lads'.
All my brother's live abroad and that is her only topic of interest. Every single day.

It is so depressing and makes me sick to my core.

The best word I can use without a diagnosis is that she is senile. I know it's bad of me to say that but that's the best work I can use. The thing is she can hold it together a lot too. So it's so strange. It's like her brain is short circuiting and that it works sometimes then there's other times and it's not right.

The hardest thing is having no diagnosis. Not that I want a diagnosis of dementia. There's something seriously wrong with no but nobody understands. Everyone would like to write me off and explain things away on anything and everything else.

@TrayofRoses I responded on your other thread that she sounded very similar to my DM. We only got the dementia diagnosis because DM has a number of severe physical symptoms including poor speech so the neurologist concluded it was likely dementia.

I am afraid the doctors won’t be terribly interested until it impacts her daily life and she can’t live independently, but it’s worth still reporting the symptoms so they are aware.All I can really say is protect yourself as much as you can. You are basically watching your DM change to this other person in front of your eyes, it’s like a living death and it’s absolutely horrible to go through. I have had some success with basically shutting down emotions when I go through the door and treating myself with a nice lunch or pack lunch in a favourite park after seeing them.

When siblings visit from abroad I would use that as an opportunity to completely absent yourself from the situation in fact go on holiday while they are there. They will soon start to believe you if she has too much time with them. People with dementia know how to mask in social situations for short periods of time, but they can’t maintain it for long.

I am sorry, it’s a sad journey to be on. Nobody wants to be in the cockroach cafe, but it provides wonderful support.

I am afraid the doctors won’t be terribly interested until it impacts her daily life and she can’t live independently
This ^^

Relating to so much here. My DMum is so forgetful now and yet she sailed through the memory screening at the GP last week (27/30). But she can't remember what you told her ten minutes ago, or yesterday and in combination with being hard of hearing it is hard work.

RE wills and trusts, DF expressed an interest in switching their house to tenants in common a few years ago and leaving his half to me and DB but we said no, didn't want to be in a situation of half owning the house with DM and who would be responsible for repairs etc, I'm glad we left it even if it does all go in care costs. A Dfriend is in a hideous mess because his DF lived with a long term partner who has just died and left everything including the house he lives in to her DCs and he needs a care home now so there may be questions about deprivation of assets. We have been fortunate in that DPs pro-actively set up LPAs a few years ago, divided their savings and investments equally and kept good records. Even with all that it has been a lot of work taking it all on.

@watfordmummy re the direct funerals, we lost a friend recently, the friend had no family and only a fairly small circle of friends, so we organised a direct cremation, but all the friends got together for a scattering of the ashes in a meaningful place and went for lunch together afterwards, it was lovely and perhaps something like that would work for your ILs too. Similarly DUncle had a direct cremation a couple of years ago and then his wife and DCs threw a commemorative party a few weeks later.

They are now saying they suspect gastroenteritis ???
Nothing to do with her severe diverticulitis then! 🙄

@Raven08 has anyone mentioned her diverticulitis? IME you have to keep reminding people of what they should have read in notes.

This from many years of being on warfarin. 'We are going to put you on XYZ medication' I'm on warfarin 'Oh, yes, errrr.... I'll need to speak with a colleague......'. Then never hear anything further.

I agree @GnomeDePlume you have to spell it out and even when you do they don't listen or say they will do something and don't. When DF (who is on blood thinners) had his fall recently he was not given a CT scan of his head until he was on the medical assessment unit two days later which picked up his bleed on the brain. Both me and DH had been saying he was more confused since we took him in. They just see elderly people and assume that is their normal behaviour.

@Raven08 when DF who also has diverticular disease went in last year with symptoms like you describe they did an abdominal CT so definitely push for further tests especially with her history of sepsis.

I'm just totally fed up.
They've done an x ray on her stomach 🤷‍♀️

That's right and thank you for replying to my other thread.

That's shocking how doctors are so slow to help until something happens. I did get that sense already in that I looks like they are waiting for some sort of a crisis point to happen before they may consider a problem. I think it's awful. I am in a state where I know there is something wrong. There's an accident waiting to happen regarding my mother.

Yeah, I had family come home from abroad last year and I was absent a lot of the time. They still didn't see anything wrong with my mother. My mother focused a lot of doing stuff for them and doing their laundry but behind their backs she would give out stink to me about my brother's wife. It wasn't a normal type of anger. Yet she was insisting on doing their laundry. She was able to cover up whatever is happening. My family just didn't see.

One of my brothers did witness something in that there was a film festival last year to celebrate am actor who is now a long time dead. I can't give his name because it will give away my location. It was just a local hall showing some screenings of his movies and some discussions. My mother said -
'I love him - we should go to see them'.

My brother asked her
'who are you hoping to see'

And my mother replied
'the filming crew'.

She thought there was film crews in the loacitly and that wasn't it.

Her comprehension and understanding was just so childlike.

Still my siblings, they don't understandinwhats happening. I am the only one at home to see all this. Any time I try to talk to my siblings, they write off my concerns.

I need to get some advice about another issue please.

I live at home with my mother. I noticed a few years ago some things in my room were moved and touched and mail opened and not left back the way I left it. My mother was also ending up some items of my underwear in her laundry which never made any sense to me.

Eventually I came to realise that she was going into my room to invade my privacy, to snoop and root and take things.

I live in an area with very poor housing options. It's so bad and there's nowhere for me to go. Where am I supposed to go?

I put a lock on my bedroom door.

When I told one of my brothers who lives abroad his wife gave out stink to me telling me that it's my mother's house and she's at home a lot on her own and the lock could be causing her anxiety and to please remove the lock from my door. She managed to wrap the issue around her child saying she doesn't feel comfortable allowing her child to ever stay over again while I have a lock on my door. However they live so many oceans apart, visits are rare and it's always a family holiday with them so no child ever alone. It had nothing to do with her child.

I did listen to my sister in law at the time and I removed my lock. But within weeks I noticed my mother had an item of my underwear yet again and there was no way she nicked it from my own laundry. The only way she got it was by going into my room and snooping and taking it. It's wrong. We are two completely different sizes.

Since then I had to put the lock back onto my door but not mention it to any of my siblings. When they come home to visit, I feel obliged to stop locking my door again. I hate this. I have since put a camera into my room and my camera last summer captured my mother going into my room snooping.

The family are gone away again and I have my lock back on. The camera even captured my mother recently breaking the lock on my door while I was away for a few nights.

Basically I hate it now when my family come home to visit because I feel obliged to stop locking my door and it gives my mother free reign and access into my room.

She will never respect boundaries. Not only that the word disinhibition comes to mind. She just can't help herself.

I dread it when they come home when it should be a happy time together.

I don't know if they are coming home this summer or not. I don't know if I should put my foot down and keep the lock on my door which will anger my sister in law. Or take the lock off and it becomes a playground for my mother.

Like last summer when they were home, the pet camera in my room captured my mother, the minute I would be gone to work entering my room. Disinhibition is definitely a problem.

A few years ago, maybe 2, the family were home and my sister in law asked me how my mother knew some information and I just said 'I don't know'. I really should have kicked back and told her - 'why are you asking me...did you ask her...how am I supposed to know how she knows information?'. Although I do know. She likely went snooping and rooting in everything they owned.

I think a lot of the time my mother knows what she is doing. She will wait for people to go before she snoops. Like I can't leave a bag in the kitchen any more and go to the toilet or into another room or she has her head and hands in my bag as if she is a dog or something. The same goes for rooms. She will wait until we are gone before she will try a room. I have a lock on my room now while my other family are away living abroad. It reminds me so much of childlike behaviour. She has some level of understanding of what's right and wrong.

It was one of the earlier behaviours that got me thinking that there's something wrong. Accompanied with so much more now there is something just not right.

I reckons it's behavioural and emotional type of dementia and another poster a few posts back suggested FTD.

And they want to discharge.
Just spent half an hour arguing on the phone with the dr...
🤷‍♀️

@Raven08 oh no.

@TrayofRoses Is there any way you can move out? There is no way up from here ... and if you don't want to be her FTC it will be difficult if you live in the same house.

@Raven08 an x-ray will have no where near the level of detail needed to show if she has a perforation. Ask them what her risk stratification score is and whether they will be doing an endoscopy.

https://www.rcemlearning.co.uk/reference/upper-gastrointestinal-haemorrhage/#1571744065076-9d898bb1-0f60

The rental situation where I am is appalling. I can't afford a mortgage. It's awful and utterly depressing.

I found a programme last week that helps people with work in mainland Europe. I might explore that.

Does anyone here experience - 'sundowning'.

I know the vague definition of sundowing is increased agitation and confusion.

I think I might possibly my mother is sundowning.

Basically for about 4-5 years I observedany different behaviours and one of many is OCD spells. Every day is different.

Often she will become trance like whole she works with water in the home or she will move furniture around the home or stand on worktops to dust every inch of the place or stand in front of the TV screen to wipe it but not only wipe it - to keep doing it. Sometimes she will stand at the kitchen sink and she might be handwashing some cloths. If that was me I would leave them soaking but my mother would often just lift them up and down, up and down, up and down and it could go on for up to half an hour at a time before she moves onto something else. There's hours of OCD trance like states.

Basically after Christmas time, I came to realise that this happeneding every day after lunch time and I think this could be the term 'sundowning'.

Every day from about 1.30 or 2 in the afternoon she is more likely to get into that trance like OCD state.

When she's in this state, she has no awareness of me or my needs or anything else. She will move furniture to inappropriate places around the home. Like in front of doors and I will have to wait until she's gone to bed just to move them aside.

@GnomeDePlume how is your mum today?

@TrayofRoses it was I who mentioned FTD earlier in the thread.

Perhaps you should film your mother doing these washing and dusting rituals, to demonstrate to your family how bad it's getting with your mother.

I don't know what your situation is, but when your mother deteriorates, will you be entitled to stay in the house if she goes into a care or nursing home?
If she doesn't go into care, do you think that your family will expect you to look after her?

Are you working full-time yourself?
I'm getting a sense of a mixture of sadness and anger from your posts.

@TrayofRoses Even if your mother doesn't have dementia, it sounds like she has some form of mental health problem. I'm not an expert but my mother also (in my opinion) has dementia that doesn't quite follow the stereotypical pattern of memory loss. My suggestion would be to keep a diary of the unusual things she does and find an opportunity to share it with her GP. It may not be easy if your mum is not willing to discuss it or seek help herself but I believe you can share information with her GP (although they can't discuss it with you without permission). I think I've seen it suggested that the GP might call an elderly parent in for a 'routine check' following information from a concerned relative.

Is all of this behaviour relatively new, or has she had mental health problems/OCD before? Assuming you've always lived with her, is the lack of privacy relatively new or just her personality?

It sounds like you really need to be thinking about yourself and planning for your own future (or at least finding out what options you might have). As a pp mentioned, it will be very difficult to live with her and not end up as her carer. Is this something you are willing to take on? I'd definitely suggest looking at alternative accommodation options as soon as you can. Even if you are willing to look after your mum on the understanding that this means you have somewhere to live it may not be as simple as that. If she needs more care than you can possibly provide, it's not unusual to have to sell the family home to pay for it and you would be unlikely to have any right to stay or stop a sale. Not to mention that when she passes away the house may not be left to you (even if that's your understanding, she could change her mind). Even if you don't plan to move now, I think it would be better to have a solid plan now that can be used when needed rather than having to try to find somewhere to live when you're alone and broken from years of caring for a parent.