Can people with dementia live alone at home?

[Simon_16091]

Thanks SheWolf.

I am also concerned for my own health. But I am also concerned that I carry out what I said I would do until the time comes I can't anymore.

Sometimes we are left out of family and have to solely make choices and decisions and to do what we have to do on our own. My brother had bailed over a year ago and my sister though supportive can't be here all the time. But it all depends at how we look at it. I would rather go until I can't anymore than walk away, and that's what my mum hopes I will do and we have talked about it. The time will come when no matter what I do it won't be of use anymore despite all the love it is given with, there at that moment a decision will be made. I hope to keep mum at home as is her wish until safety becomes paramount. At the moment she is still functional and able. My sister and I have already looked at various placements for her and found her a great care home should she deteriorate to the point of needing full time supervision/care.

Its very difficult knowing your parents wishes and balancing them against alternatives. I would rather go as far as I can and give up knowing I had done what I can for as long as possible.......than not try at all.......I suppose some would call this 'letting go'

[bowlingbun]

I understand how you feel Simon, but the more help you have the longer you can care for mum. Asking for help isn't saying you are a failure, it says that you want to do everything possible for mum.

[Simon_16091]

Hello bowlingbun,

Yes your are right, but given mums only social support lasted 8 weeks (yes 8 weeks funding), the help ran out a year ago. Unless Theresa May has new radical plans for social care, we are stuck!

No its not easy, I may have failed my MSc because of this, and I am sure the emotions of that will add to the already general weight I feel in terms of it all. Despair, frustration, anger, tiredness, loss of self will, loss of hope, loss of faith in humanity, loss of me....myself

But when I look around me, lots of people make promises they never keep -I'd rather they didn't, that is the thing that would just make it easier for me to keep going, easier not to have a little hope or expectation!

Simon

[Simon_16091]

Well everything has led to me having a personal crisis a real bout of depression, and those promises I eluded to aren't there, lots of goodwill speech, but the reality no one wants to really help.

So I am booked into to see my GP, signed off from work and left even more isolated than before. Ya just gotta know when your beaten, this may be it......

[bowlingbun]

Simon, sorry to hear you have been let down by empty promises. Does that leave just residential as an option now? Anything we can help with? Be kind to yourself, dementia is so cruel.

[Pet66]

Simon
Sorry to read you feel so low. You have and are doing your very best. Maybe, it is time to consider residential now?
BB says dementia is so cruel. It certainly is.
You take care.

[Simon_16091]

I have a boss homing in on me out of genuine concern, I have a mum who is still functional and able to live at home and I have me to deal with. The problem isn't a need for residential care right now, she doesn't need that yet, the problem is in the break down of her siblings not getting on and not being able to come together and help, as I have spoken about in another thread on here. A vast part of my problem is not caring for mum it is however having to care for selfish siblings and their worlds, life would be easier if a certain brother would drop the crap and join in and help....its actually that simple and also the one thing that is driving me to personal despair...in fact life would be easier if my sister and brother finally resolved their differences all round. When these problems happen all kinds of problems take over from the person who is/was actually the first concern, they build into distractions and wasted energy, I have wielded my sword and made sparks and made the situation clear to all, either they help or they leave, stupidly (and whatever readers might think) its just easier that way than having to arrange separate visits and decide on who can see mum and when and continuously settle politics that actually don't bloody matter......pestilent siblings rather than grown mature wise adults as sister and brother are my biggest headache not poor mum who copes remarkably well and last week scored another 25/30 on her test after 2 years of being tested (diagnosed over 6 years ago)

[Simon_16091]

I just think we are failing people with mild dementia, it isn't because I haven't tried, God knows I have, but not everyone with dementia has an ideal support network, my story shows this. I can't be all things to all people, I can't resolve sibling disputes as much as in my heart I want it all to stop. In my memory I remember us all being a family ...but now??

People and families come in all kinds of packages, some are close and workable and others like me and mum have baggage we can't resolve, because it isn't ours to resolve, but we have to deal with it regardless.

I'm booked in to see my GP this week, this will be the second time I will have needed SSRIs in 18 months. I will let you know the outcome of that GP consultation because I am going to ask about what help is available to me as a sole carer in a rural area.

[Anne001]

You are quite right, Simon. Solo caring is very tough and this Forum is littered with stories of family members who do not pull their weight. Sadly, you cannot make people care. I would look after yourself and mum and ignore, as far as possible, the siblings. All you can do is look after yourself, which you are already doing with a trip to the GP. I too was a solo carer; the only support I got was from paid careworkers.

I guess the decision you have to make ultimately is how long to care at the cost of your own health and sanity. Not easy.

[Simon_16091]

Thanks Anne001

Not forgetting the original title of this thread 'can people with dementia live at home?'

Well, I think the answer to that is in the support they get to live at home safely.

My job is not done yet, I don't deny I have moments where I wish it would end, but that isn't because of mum, its because of the lack of help from family who have become lost in their own ideas and thoughts. Throughout this experience has been one overriding problem....money and estate, not questions and answers about helping mum.

I visited the GP yesterday, and asked what help is available, I got the inevitable answer....social services provided mum consents as she currently is. I also ended up back on SSRIs as I suspected.

I am sure leaving the GP's practice on closing the door I felt a little uneasy, who and when decides these things and what am I supposed to do?

Choices about continuing to support people with dementia are not necessarily the right choices, it seems our elbows are bent to make a choice, regardless of where we are, even if that means premature submission to the system and not the disease.

I'm not going to knock the trainee GP I saw, I think he struggled not knowing me or mums case after 30 years at the same practice, where in mum is very well known. I do think that complex mixed medical/social cases get missed because often there is not continuity in community care anymore, patients no longer see the same people for long standing conditions plus in a rural area mum is confined to the house unless I am on a day off (there is no funding). It is well reported over and over again about social isolation not only worsening dementia but also being one of the factors causes of Alzheimer’s.

I am not going to harp on about the fact mum has paid her stamps all of her life, but I am going to say that in the past we knew old age would become a problem, but what have we done about it?

I'm not going to knock people who don't see new ways of working any better, but I am going to ask them for a solution

I am not going to ask people to know hindsight, but when they are old and unwanted, what will they expect as their years turn into regret?

This is a real social problem, it isn't my problem or yours, its ours.