Living alone at home with dementia

[stonecircle]

I've posted before about my 90 year old mum. She has been in hospital/intermediate care for 2 months and has now been moved to an elderly person's mental health unit.

My mum has been becoming a bit vague/detached for a few months but, following a fall became extremely confused and suffers from constant hallucinations. It's probably a mix of persistent uti's, limited senses (macular degeneration, cataracts, tinnitus, hearing loss), dementia which has been unmasked by her sudden change in circumstances, depression etc etc. She constantly sees things/people who aren't there, can't understand why relatives living hundreds of miles away don't pop in to see her, forgets my dad is dead and talks to him etc etc. Her mobility was limited before this latest crisis but she can now barely stand unaided. But she tries to stand when people aren't there and has had a number of falls.

The doctor who saw her yesterday talked to her for a long time (she didn't' know where she was, the day, date or year, could hear music in the corridor, told him her sister was still alive - she isn't etc etc) and we filled in the gaps about the extent of her confusion. His closing comment was that he hoped she would be able to return to her own home with a care package......!!

The thought of someone with limited understanding and mobility living on their own with carers popping in 4 times a day (which I understand is the maximum) is horrific and it will put an intolerable strain on my sister who lives nearby (I don't) and is not in great health.

Trouble is, mum is with it enough to chant her lifelong mantra, "I'm not going into a home, you can't make me" but not with it enough to understand her own limitations or the potential impact on her family, principally my sister. I presume we can't make her go into care if she won't agree.

Does the NHS really expect people in such a state to live independently when they are clearly a risk to themselves?

Feeling very stressed and desperate here!

Hi stonecircle I really sympathise as we are in a similar position with a relative in our family. The crucial element in all of this is your mum's 'capacity' to make her own decisions. If she is deemed to have capacity she can make the decision to go home no matter how unsafe that would be to her. You need to find out if she has a recent assessment as to her capacity (that may not have been what the doctor who saw her did). If she is deemed to be capable of making this decision, then unfortunately there is nothing you can do and families can get put in very difficult positions as they feel they have to make up the short fall. It is correct to say that 4 x daily care is the maximum.

I would push for a capacity assessment for your mum and make it clear her living arrangements, your sister's health etc. Good luck.

Could you push for some convalescent/rehab care? My experience was that once my mother was in a home she discovered it was not as bad as she expected and indeed probably better than being on her own and struggling.

She then moved to very sheltered, but started saying she would be happy to stay where she was. Fear of the unknown clearly was part of it.

I'm assuming she will get a proper assessment next week when the consultant psychiatrist is back from leave. My sister and I had been thinking along the lines of some respite care and then extending it. She was always quite accepting of the possible need for respite care when she was thinking clearly but i had terrible trouble with her last night when I tried to come away because she was determined she was going to come with me.

I guess we will just have to take each day as it comes and I will have to try and curb my natural instinct to plan ahead. Really I'm trying to plan ahead for my sister's sake as much as my mum's. My sister lives close by and I live 200 miles away. She is 10 years older than me and has had poor health in recent years and I just know she is going to try and do too much. I want to run away screaming after a couple of days visiting my mum but my sister is doing it every day. If Mum is discharged with a care package my sister will fill in all the gaps and end up sleeping at my Mum's bungalow.

Mum has never been a particularly easy person though I have always loved her dearly. But now all her worst characteristics are hugely exaggerated. She's demanding, angry, unpleasant and immensely critical of many family members who have done nothing to deserve it. She's particularly jealous of my sister's two young grandchildren and says very hurtful things about them. Yesterday she was furious that my husband hasn't been to see her and has now decided he is having an affair and is furious with me that I won't accept it and haven't read about it in the papers. No amount of pointing out that he is 200 miles away and has a job plus his own elderly parents to worry about and our kids doing exams etc cuts any ice. We can't both visit and I'm assuming she'd rather see me!

It might be worth getting in touch with Age Concern. I'm guessing, but I think there might be a funding issue at the bottom of this.

You say your dm is currently in an elderly person's mental health unit. This comes under the NHS. I know someone who had to be sectioned because she was in her 70's AND mentally ill. (She kept dialling 999 and then refusing to let the emergency services in - amongst other things.) She was moved to a secure mental health facility and the NHS paid and is still paying, some years later, for continuing care.

On the other hand, those who are simply diagnosed with dementia come under social services and, if they have the money, will have to contribute to their care, whether at home or in a home.

My mother had vascular dementia which worsened over the 5 years before her death. She started off with a care package with visiting carers after being discharged from hospital after an emergency admission for a UTI. This was meant to be temporary, but the confusion increased, dementia was diagnosed and over the years she worked up to the maximum of 4 times a day. She wasn't able to talk as much as your dm. Tended not to finish her sentences. But I wouldn't say she showed any signs of mental illness, just a deteriorating brain. No hallucinations or psychosis. Apart from the dementia diagnosis, by a community worker, she had no mental health involvement.

I totally agree with you that she cannot possibly be discharged to live on her own. My dm had very restricted mobility. She was either in bed or in an armchair. Your dm could potentially be lying on the floor for 13/14 hours overnight until a carer found her.

You need to get advice on this. Do ring Age Concern and ask them what they would suggest. I would stress that in no way should your sister be relied on as part of a care package.

It beggars belief Stonecircle.
The health authorities will be relying on your sister to provide the care your Mum needs and until she says she cannot be counted on to be part of the plan, they will have to take proper action to make your Mum safe.

My brother lived local to Mum (I'm the other end of the country) and he simply couldn't cope anymore, wanderings, hallucinations, etc and told SW and doctor he needed a break. Mum was taken to a home for respite and once properly assessed was admitted.
When I visited Mum at her home it was heartbreaking, it was like leaving a child alone but up until then the SW insisted help with meals and pills was enough.
Hope this works out for your family and your Mum.

Hi I'm a psychiatric nurse currently working in an elderly mental health unit.

Just want to clarify a few things for you.

Continuing health care is very very expensive for the NHS. When we decide someone requires 24 hour care it is a team decision and we have to complete a nursing report that then goes to a panel to decide level of funding. The panels first question is always "has the patient been tried at home with a care package?" If in the case of your mum they haven't but the team still feels 24 hour care is the best option we then have to prove why. This is why prior to these decisions being made we have to do assessments on your mum's day to day functioning, occupational therapists will do assessments on her daily living tasks, posSible do home visits with your mum and build a body of evidence to put in the nursing report. it's a long process and can be very frustrating for families, unfortunately people do end up going home with care and being readmitted a short time later having failed at home HOWEVER think of it another way, if everyone was sent straight into a home with assessments of without trying the alternatives of home care it would be prohibitively expensive and also a lot of people would be in homes when they could probably manage at home.

Sorry this is happening to you are your family... It's never easy and no one knows what it's like to be going through it Until it happens to them.

Hope this helps and I'll answer anything else if you like.

frikadela I work in a hospital and have often wondered why people who patently will not be able to cope, are sent home instead of straight into a residential placement. It's the 1st time I've seen it explained so succinctly, thank you. We live in the real world and while it is worrying seeing people who are very frail being waved off home, I understand the reasons why better now.

It's so heartbreaking. My MIL cries and begs and tantrums every night not to be left alone "in this house" that she doesn't recognise. Yet is adamant she doesn't want to be in a home. We arranged carers for four hours a day, but we are getting scores of frightened and confused calls before they come. The really annoying thing is that we could fund a really good care home for her, without any state help, by renting her house out and using her pension if social services weren't so insistent that she is better at home. She is similar to the elderly person in the opening post, clearly very confused and unable to cope. As things are going she will need NHS/state help when she does need a home as her savings will be gone. It's just so stupid.

Why must these elderly people suffer until they actually hurt themselves and their families be left worried sick? It just doesn't seem right.