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Carers UK Forum • Can people with dementia live alone at home? - Page 12
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Re: Can people with dementia live alone at home?

Posted: Thu Jan 12, 2017 8:47 pm
by jenny lucas
Simon, I asked the original question, way back when, but as my MIL's own dementia journey has progressed, in a way, I've discovered the answer as I've gone along.

I think the main thing for us all to remember is that saying 'dementia' is like saying 'cancer'....it's a LONG spectrum!

One can have 'slight cancer' at one end (dodgy lump, etc) and at the other end we can have end-stage cancer.

The difference between the states (as in, their impact on the patient) is VAST.

So, too, with dementia.

You say 'the support they get to live at home safely'....but, as we know, grimly, 'in the end' (ie, advanced dementia), they will need someone with them ALL THE TIME. At the very, very least they'll need someone on call, very close by.

My SIL's mum lived in the bungalow next door, about a two minute walk door to door, and indeed, as her mum deterioriated to the point where she was bedbound and inert, my SIl did 'leave her alone' (I'm not entirely sure for how long, but put it this way, no one slept in the bungalow, so I'm pretty sure the mum was left there for a good half a dozen hours between say midnight - final check - and six - first check). But they reckoned the mum was so totally inert that it didn't 'matter' any more.

But of course, presumably, she could have died at any time of the dementia - and indeed, did die, on her own, in the end, but in a care home when there was no one in the room at that precise time (very common, I know, for that to happen.)

But my point is really that at the stage that my MIL currently is, in a secure dementia home, she really does need someone 'close by' all the time. When she's dozing, it's OK, and she does doze a lot, but when she's awake and conscious she is not bedbound, and she can wander around, so of course someone has to be there.

And, of course, she is incontinent now, so has to be on 'hygiene watch', and really has no idea where she is, or what to do.

If she were at home, then 'someone' would need to be in the house, and paying attention to her and guiding her, except when she's asleep. (And, of course, sleeping is mostly napping during the day - her nights are very restless and wandering.....)

I'm not saying this to depress you, but that, grimly, is what is likely to happen.

That said, maybe the other 'lesson' for us all to take away is to make sure we make the VERY most of them, of what they are and are capable of, while they still are. For my MIL, for the moment, she can still come out with for drives, she came to me for Xmas dinner (dozed a lot, but seemed to enjoy it!), and she'll still put away a hearty picnic cream tea (in the car by a nice beach viewpoint). But at some point that is going to be beyond her. So I want to make sure that when I do visit now, I take her out while she can still manage it.

Wishing you all the best with your mum - it's a sad journey, but we have to enjoy what can be enjoyed, while it can.

(As for your siblings - please, don't let them 'distract' you, let alone with their concerns over money......focus on your mum, for you sound as if you are the son who is doing the best and the most for her, and I'm sure she 'knows' that in some way.)

Kind regards, Jenny

PS - re your Masters - are your tutors aware of your circumstances? PLEASE do ensure they are, and that you get all the extensions available. If at the worst, can you 'suspend' your course, until such time as you can resume it, and not lose the credits etc you've accumulated so far???????

Re: Can people with dementia live alone at home?

Posted: Sun Jan 15, 2017 7:32 pm
by Simon_16091
Hi Jenny,

Thank you for that response, and I agree with you.

I think that there seems to be some misunderstanding here, this isn't a case of a lonesome son handling advanced dementia, if that was the case I would be writing about things differently in the past tense, no one can give that kind of care on their own, no matter how well intended.

The answer changes as the dementia changes. We have moved from coping alone to coping with some support and no doubt will move to not coping at all. I accept that as you say a 'grim' reality.

But the interim is wide and varied, as you note dementia affects different people in different ways, and some more speedily than others. As with many diseases life goes on, until it can't anymore as it once did. This is the situation I find myself in, ensuring the most is made of the time that is left. It isn't about not accepting the inevitable, which sure enough will come. Its about living life to the full as best as can be achieved, until the 'grim' realism of dementia takes over. Living at home, means appropriate help and support, and recognition when that aim is no longer the responsible one to take for either carer or cared for.

Its very difficult, each person with dementia is different, I think that's what makes it so hard in the early to mild stages, knowing what comes next.

I think slowly but surely I am coming to find the answer myself as the journey continues, it changes as they change :)

Fortunately, my University has considered my claim for mitigating circumstances, that claim has now been upheld, thankfully so as I am at the end of an MSc having studied for it while working full time. I don't deny, that along this journey there have been great personal costs, sibling rivalry and a lonely journey, but the humane thing to do while someone has awareness and capacity is to assist them while those facets of their persona remain. We live in grey areas, not clear black and white, this poses the greatest difficulty, when there are no absolute right or wrong answers.

Re: Can people with dementia live alone at home?

Posted: Mon Feb 06, 2017 7:53 pm
by Simon_16091
Just to update you all, in the end did not need mitigating circumstances with my MSc, I passed it of my own accord, and mum is a very proud old lady......stupidly I am about to embark on a research fellowship for PhD....life goes on and we have to carry on regardless.

I have stopped trying to predict mums decline, she is now nearly 7 years post diagnosis and still functional and living her life as best she can. The average morbidity/mortality is 5 years from diagnosis. My bigger concern now is more about frailty than dementia. If she continues to remain stable as she is, then the overriding problems will be frailty more than dementia.

Just as I had accepted the one problem, I am now beginning to see that there are two problems, dementia and frailty (and no they are not both the same).

Can mum continue in her house as she is -the answer is no. We have put the house up for sale, with the intention of moving to a bungalow much closer to her family and friends for more support ....importantly social contact. Its hard as mum loves living here in rural Cheshire, but she has come to the decision herself and so the time has come to make some changes.

Re: Can people with dementia live alone at home?

Posted: Mon Feb 06, 2017 7:57 pm
by jenny lucas
First of all, congratulations on your Masters! Well, well done!

And all the VERY best with the PhD, 'Dr-Simon-to-come' !!!! :) :)

All the best too, with moving. Yes, it's emotional - when isn't it? - to move house, but I hope you can find somewhere that will be 'home' once you are there, and that will suit both your mum, and yourself. A nice 'easy-care' bungalow sounds good.

The older I get, the more I am keener on 'easy- care' than 'character property'. To me, a garden takes precedence over just about anything. Oh, an en suite. My idea of bliss. :) :)

Take care (of yourself as well as your mum) - kind regards, Jenny

Re: Can people with dementia live alone at home?

Posted: Mon Feb 06, 2017 8:43 pm
by Pet66
Congratulations Simon! Good luck with PhD. I'm confident for you.
If you re read your posts you will see how far you have moved re your mum's diagnosis. Well done. It's not easy.

Re: Can people with dementia live alone at home?

Posted: Mon Mar 06, 2017 11:17 pm
by Simon_16091
Hello


Well, its interesting I never thought mum would be so keen to sell up and move, but maybe waiting until she was done with it was the right move. She doesn't get upset anymore over it now, she just wants to go and be where she can potter and have a social life plus a nice easy bungalow to enjoy. I am so pleased for her, I was worried she'd hang out here miles from anywhere and socially isolated, but it seems she is keen to leave....thank god.

She is far more frail than a year ago, and that worries me more than the dementia aspect.

As for me, just when I thought I'd cracked life, the last 18 months have taught me a big lesson, ya just don't know what's round the next corner. Dad dying quickly was one thing, but not knowing mums condition until he'd gone was another and in the journey let downs from kin and kindred I will never forget.

This week I looked at the Masters gown I graduate in......its bloody bluey grey....awful with a dark blue hood......so I will not be conferred with my MSc in robes......they can bloody post it to me :)


I just want to send out a message to anyone that finds themselves in the positon I was in a year ago, not knowing the full extent of things until its thrown on you........I can only say to you.......you must do what is right by the one who is affected and no one else :)......it can be painful when wills are read, but if they choose you to help them, that means they trust you enough to do what needs to be done ....don't break that trust...and that is all I can say to you


My Love


Simon

Re: Can people with dementia live alone at home?

Posted: Mon Mar 06, 2017 11:39 pm
by jenny lucas
Our 'desires' certainly change as we age!

I used to enjoy going out in the evenings - dinner parties, theatre, etc etc. Now I just want a cosy, easy night in by the fireside. Going out in the evening is an ordeal!

I used to want a BIG house with loads of space. Now I just want a small cosy space that is WARM (I still want a big garden though - FAR more important to me ha ha!)

So, I'm very glad to hear that your mum has 'mentally downsized' and now wants an easy-care bungalow. Good for her! :)

Re your graduation - no, please please wear the gown! You've worked so hard for it. And do have the photos taken of you in it with your Masters certificate. One day you'll be glad you did.

And, just to warn you, when my son graduated the PhD students also graduating that day had the STUPIDEST hats imaginable! They looked like cardinals! Totally bizarre. Made my son's ordinary grad outfit dead stylish in comparison. And HOW PROUD I was of him. Your mum will be the same of you, I'm sure. So please do wear the gown!!!!

Re: Can people with dementia live alone at home?

Posted: Tue Mar 07, 2017 12:33 am
by Simon_16091
Hi Jenny

Yes mum is excited...she's very pleased.

I'm trying to transfer my MSc to another university with a better colour scheme.......so far my requests have been rejected.......it seems in order to please an old lady I will have to wear the colours ascribed by......mores the pity.......however mum has offered to pay for the photo

Re: Can people with dementia live alone at home?

Posted: Tue Mar 07, 2017 9:50 am
by jenny lucas
Simon, of course she's excited! :) (I was thrilled to bits when my son graduated!)

If your mum isn't able to get to the ceremony itself, do check out if the uni films it! My son's did, and although yes the video cost, it's a 'priceless possession' to me, and I wouldn't be without it. Your mum may feel the same.

If they don't film the whole ceremony, maybe they take a photo of each 'presentation', where you receive the degree, and I would recommend getting that for your mum as well.

Also, try and get someone to 'informally film' you on your phone as well (if that's allowed), or certainly afterwards as well as you 'mill about'.

I found my son's graduation ceremony intensely moving - all those 'maedival gowns' (!) reminding one that this is a centuries old tradition. The most moving bit was when the Chancellor stepped forward and said (I paraphrase) - 'I now confer on you all the degrees for which you have been presented'. And the deed was done. :) (I know you've been through graduation itself already of course)

PS when you choose your PhD thesis, make sure it's got a VERY VERY LONG title. I was so amused that the PhD students in my son's 'bunch' had desperately long and complicated thesis titles that all had to be read out loud in full. Brilliant! :)