Feeling lost and alone

[Samc67]

My mother is 82 and was diagnosed with Alzheimer's late onset sept 2022 after taking her to the GP Dec 2021. (Her case got lost for a while!). She lives alone and my brother and myself live a 2 hour drive away. I have POA. She has been managing but deteriorating. We have noticed her personal care is lacking and increasing confusion over some things. I manage her life admin and finances. I took her car keys away in early May as there was increasing damage to the car all 'caused by other drivers'. I visit fortnightly. She fell off a stool on 4th June and broke her hip and went into hospital. I temporarily moved into her house so she had a hospital visitor each day as she has no friends. Her house has a very steep staircase and steps up to the kitchen. The hospital wanted to discharge after 7 days but I felt she would be unsafe so managed to get her transferred to the community hospital for rehab. She came home mid July with a care package 3 times a day and I returned home to let her settle into the new routine. After a week she started telling the carers to go away she was independent. She would watch for their arrival and be waiting at her door she would also try to complete tasks they would help with before they came - it became farcical. She has discarded her walker and struggles to free walk and has gone back to her normal routine of walking 0.75 miles a day walking alone and unaided. She is dragging her bad leg and is exhausted. With reluctance I cancelled the care package as she was becoming hyper vigilant and extremely anxious, more and more rude and wouldn't let them in the house.

This week she called me early in the morning to say I had visited her in the early hours and had I got home safely. (I had not visited). I called the GP surgery who wouldn't give me an appointment but I was offered that her dementia review be moved to that day. The mental health nurse suggested Mum had un recognised pain and may also have a urine infection which it turns out she has.

The medical professionals I have spoken with have said it's hard but my Mum is making her own decisions even if unwise and that have to just wait for an event. No one wants to assess her mental capacity and I don't know where to go from here. Mum would be self funding which is why I feel no one is willing to help and I don't feel qualified to make an assessment. Mum is adamant she will live out her days at home and is fully independent and in control.

My mental health is suffering and I have alot of anxiety about Mums safety. I am struggling to just accept I have to just let her be.

Apologies for the long post.

 

[canary]

Hello @Samc67 and welcome to Talking Point.

I can see why you are concerned about your mum. My mum got to the stage of not letting anyone in the house either.

Im guessing that you feel that she should move to a care home - is this correct?
Unfortunately if you are self-funding (which your mum would be) then SS usually just let you get on with it. There is nothing to stop you checking out the local dementia homes now to see which ones would accept her and what they are like.

The medical professionals I have spoken with have said it's hard but my Mum is making her own decisions even if unwise and that have to just wait for an event. No one wants to assess her mental capacity and I don't know where to go from here

It is true that according to the mental health act people are allowed to make "unwise choices", but this only applies if they still have capacity. I take your point about no-one wanting to test her. One solution that springs to mind is finding an independent Social Worker near you (google is your friend) to test her. You would have to pay, irrespective of the result, but it may put your mind at rest. If she does not have capacity, then there is no reason why you could not move her yourself.
Other than this, it is a question of waiting until the inevitable crisis occurs.

 

[Palerider]

My mother is 82 and was diagnosed with Alzheimer's late onset sept 2022 after taking her to the GP Dec 2021. (Her case got lost for a while!). She lives alone and my brother and myself live a 2 hour drive away. I have POA. She has been managing but deteriorating. We have noticed her personal care is lacking and increasing confusion over some things. I manage her life admin and finances. I took her car keys away in early May as there was increasing damage to the car all 'caused by other drivers'. I visit fortnightly. She fell off a stool on 4th June and broke her hip and went into hospital. I temporarily moved into her house so she had a hospital visitor each day as she has no friends. Her house has a very steep staircase and steps up to the kitchen. The hospital wanted to discharge after 7 days but I felt she would be unsafe so managed to get her transferred to the community hospital for rehab. She came home mid July with a care package 3 times a day and I returned home to let her settle into the new routine. After a week she started telling the carers to go away she was independent. She would watch for their arrival and be waiting at her door she would also try to complete tasks they would help with before they came - it became farcical. She has discarded her walker and struggles to free walk and has gone back to her normal routine of walking 0.75 miles a day walking alone and unaided. She is dragging her bad leg and is exhausted. With reluctance I cancelled the care package as she was becoming hyper vigilant and extremely anxious, more and more rude and wouldn't let them in the house.

This week she called me early in the morning to say I had visited her in the early hours and had I got home safely. (I had not visited). I called the GP surgery who wouldn't give me an appointment but I was offered that her dementia review be moved to that day. The mental health nurse suggested Mum had un recognised pain and may also have a urine infection which it turns out she has.

The medical professionals I have spoken with have said it's hard but my Mum is making her own decisions even if unwise and that have to just wait for an event. No one wants to assess her mental capacity and I don't know where to go from here. Mum would be self funding which is why I feel no one is willing to help and I don't feel qualified to make an assessment. Mum is adamant she will live out her days at home and is fully independent and in control.

My mental health is suffering and I have alot of anxiety about Mums safety. I am struggling to just accept I have to just let her be.

Apologies for the long post.

It is hard especially when we try to honour a parents wishes. I did everything I could to keep my mums wish to stay at home, but unfortunately there comes a point when the dementia does take over. When does an unwise decision become an unsafe one? -not easy to answer that question. I also understand your anxiety, mine was through the roof at times when I was working, leaving mum at home to 'cope' until I got back, but eventually what was a workable situation became unworkable and after mum wandering some five miles and saved by a passer by who managed to get her home and with the help of her neighbour into the house. Before that she had wandered and I had to contact the police to begin a search as I was 50 miles away at work. Sadly these were mums last outdoor activities as it was clearly time to reconsider what I had promised her. No one can can care from a distance as the dementia progresses and to be honest many people find it difficult even if they live with someone. I lived in two worlds one at home with my mum and the other 50 miles away at work all the day long -each time something happened my anxiety would increase until it became unbearable and I just could not consciously leave my mum on her own anymore for her own safety.

There is no right or wrong answer, but battling on without any immediate support is probably not a long term solution as things will only get worse.

 

[Mumlikesflowers]

No apologies required. You write very well. I'm not surprised that having a care package made her anxious. I've been a home carer myself, years ago before it got anything like as threadbare as now, and even then it was pretty bonkers. If I imagine myself always expecting someone to arrive, not sure who they are or how understanding they will be, I'd be on edge. I was going to say I don't think it's cos she's self-funding. But then I haven't needed to get a mental capacity assessment. I think perhaps it's a case of re-thinking how to get more support for her. I mean maybe she'd like a walking buddy? It's taken my Mum over 6 months to accept the once a week Support Worker we have.

I think being honest about the impact on you might help your cause. I mean you can say it would help your own anxiety if she had a bit of help.

As you have PoA, she has already empowered to, at some point, to do things in her best interest when she can't make decisions.

I have been living with my Mum for over a year. That has probably lowered my anxiety but I'm about to move her to a care home and then my anxiety will be very high because she will likely be so distressed. My point being that this dementia lark is stress city whichever scenario you are working from.

 

[SeaSwallow]

Welcome to Talking Point @Samc67 Both @canary and @Palerider have given you good advice. It is awful that people are told that they must wait for a crisis to happen before a person with dementia can be placed in a nursing home but all too often that is what happens when a person is still deemed to have capacity (even though a formal assessment has not taken place).