Helping those with dementia remain independent at home

[Water drinker]

My father in law now lives alone in a McCarthy & Stone retirement flat since he came out of hospital after a fall with a diagnosis of dementia last year. He's now 76. Before that he lived on his own in a fairly large 4 bed house as my mother in law died 10 years ago aged only 55. She cared for her dad and father and law and it contributed to her death and the fact that she had no life of her own before she died. At that time I suggested meals on wheels for him as she used to do everything and he'd never cooked for himself.

Dad really wouldn't do well in a care home if he was admitted whilst he has as much mental capacity as he does now. He's not social, he saw how is dad and father in law went down hill soon after being admitted when they couldn't continue caring for them at home. On the other hand I can't help but wonder if sooner is better whilst he still has a chance of taking in a new routine. I think not though.

He occasionally forgets who we are, hides things, halucinates, goes wandering without a coat and is very confused. Whilst we are extremely worried and obviously upset, we have to look at things logically and weigh up whether he's a danger to himself or others. At this stage he isn't. He forgets to put his coat on and wanders a lot, he always has so this isn't a continuation of behaviour and is not new. He gets confused, rarely knows the the day and gets time mixed up. Hoever, he's always home in time for meals on wheels and is able to wash and care for himself on a day to day basis.

I thought I'd list the extras we have in place to help him to remain as independent a possible for as long as possible in the hope it helps others and the hope it prompts others to post about things we haven't thought of, or better alternatives. We set the flat up this way from the moment he moved in even though it was more than he needed at the time. We've needed to add a couple of bits now that we hadn't thought of (all the reading in the world didn't have me entirely prepared for even this stage of denetia so I dread to think how it will be as time progresses) but wanted to minimise change so wanted all extras added from the start.


The flat is buzzer entry. The warden knocks on him daily and can see when he goes out. She's called me a couple of times when worried and I've been down there within 10 mins.

The flat has emergency pull cords, although dad wouldn't think to use them so they're pretty useless really.

We had Just Checking installed so we can remotely make sure he's home and moving about and keep an eye on sleep paterns.

He has a cleaner once a week who also does his washing and ironing and she has experience of those with dementia and calls us to update.

He has meals on wheels which he always has come home in time for as he's had them for 9 years.

He has a simple big button home phone with memory buttons.

He has a mobile with no keypad and only 3 memory buttons and a panic button on the back which texts us when pushed and then when we call back the phone automatically answers.

One of the buttons is a taxi firm which we have set up a pre-paid account with. All the drivers know him and when he calls they answer, 'Hello Mr ****' and know to take him to his current home even when he gives them his old address. Church and his club know not to offer ad hoc lifts as he needs the routine of the taxi.

His walker has GPS on it (his suggestion when he first realised he was getting confused) which shows history of where he's been so we can build a pattern of his habits as well as finding him if we get worried.


His front door has a hook for keys on the back and a whiteboard saying take your keys, mobile, walker.

His main living room has a glass board planner listing each day that week with the date and possible activities. It's wipe clean and gets changed so he just has 1 week on there.

His watch is self setting by radio as he never believed the time and used to change it. Now it just automatically self rights.

He has railway station style digital clocks in each room with the date and day on them. He's a railway buff so its something he's comfortable with.

Switches and other things are labelled.

He has an electronic pill dispenser that texts us if he hasn't taken his pills within 30 mins. Brilliant as we know he's no over or under doing it.

We check the cupboards and the house twice a week and between 3 of us he's called 3 times a day plus the warden. Hubby and my sister in law also have enduring power of attorney which dad set up last year having had the papers ready the year before when he realised something was wrong.



The next thing is that hubby has devised a device that activates when the front door is opened. It will play a message recorded by hubby (so its a familar voice) appropriate to the time of day either telling for example that its day its night time and to not go out or to remember his coat (big problem at the moment).

We really are desperate to keep him in his own home for as long as possible as that's his wish. However, he doesn;t really see it as his pwn home so its more a case of keeping his independence. Atm the only things of concern are him going out without a coat, getting lost and him having more falls (which only happens when he's out) others preying on him. I guess if things progress to him not being able to wash or remain continent then we'll look at home help.

The GPS has been a god send. I'd have been inclined to want him shut up in a home for peace of mind but we know his wandering is habitually the same route most days. I know I can drive straight to him now if I wanted to by calling his GPS for its position.

I just feel so glad that he has us to look out for him. So many in his complex don't have anyone close to them or who are as proactive or technically savvy to get these electronic devices that really have been so good for him and for our peace of mind.

 

[hollycat]

My hubby used to be a house manager. He was always very honest and open, however, the residents were a different matter !

My biggest fear for you you is the possible negative reaction of the other residents. Has this occured ? It may be worth asking the manager if it has ?

Dont know if you are aware but M&Stone do assisted living i.e. inbetween current flat and care home. They are not CHEAP service charge wise, estimate double what you are paying now, but there's an option to consider.

 

[Water drinker]

Thanks for the suggestion, I didn't know that. Certainly something worth looking into.

We're lucky, the manager is very good. She's straight on the phone when there's a possible issue. She has said that she and the residents are concerned about dad. He's been spotted waiting in the chair by the blocks front door waiting for somebody to deliver him tickets to Belgium. I can reason that one out.

When hubby and my sister in law have time off over Christmas they are planning to look into what homes are available in the area to work out which would be the best for him when the time comes. I've explained this to her and explained about the GPS on his walker too. As soon as we tell people about that they feel a lot happier.

I don't know if it's possible but we're hoping to get him on the list of a good home and decline places as they come up until he needs one. I'm guessing this will be very sudden given how the disease so far has cycled between stability and decline.

Atm its a case of the confusion being upsetting for him and others to watch but nothing serious in terms of safety. Its hard to get the balance right between his needs for a good quality of life and family, friends and aquaintainces being able to handle our concerns.

 

[danny]

Hi, I think that what you have set up for your dad is wonderful. To give someone with dementia as much independance as possible yet minimise risk is not an easy task.

You sound a lovely caring family.

Best wishes, Angela.

 

[Mariondb]

Waterdrinker you are trying hard like we did to convince yourself he can stay where he is. You have to accept that there will come a time where this will simply not be possible...... when the word "vulnerable" is used.

We tried every which way to keep MIL in her flat, that was what she wanted, but in the end it simply wasn't possible - and she wasn't even mobile so couldn't wander and her dementia isn't at all progressed at present !

Assisted living is just that, for retired people, but it isn't specific experienced care that will be needed for your Father - and that actually he seems to need now and you really do have to make a decision before it is made for you which may happen if other residents find their concerns start to take over.

You are not forced to socialise in Nursing Homes or Care Homes - you have your own room with private facilities. My MIL is not a sociable animal - happy to sit on her own when she lived in her flat and didn't encourage visitors (still doesn't), so she stays in her room when she wants, and they hoist her into the lounge when she wants. She is happier and more settled than we or she ever believed she would be and most importantly she feels secure and safe.

So it may well be that despite your concerns, given the right Home and an understanding of his character by the staff, he might adjust much better than you fear.

 

[sussexsue]

Hi

I think Mariondb makes some very valid points. Where my mum is she also likes to spend quite a bit of time in her own room (although she is very sociable). It is a nice comfortable room and she can wander in and out of the garden as she wants. Importantly she is safe and cared for.

When looking at care homes there seemed to be some where all the residents were pulled together into a day area, and others like the one mum is in, where there are several lounges and conservatories where residents can wander to and from as they wish. Having everything on one level was important for us as we felt it gave her greater freedom.

I think you have done an amazing job, but it may be worth looking at Care Homes as well as what they offer and how they operate varies immensely.

Sue xx

 

[Water drinker]

The only thing he does, it continue to wander. I have to make that clear as its a continuation of what he's done for the past 11 years he's been retired. He's always gone out for walks and bus rides.

He always comes home in time for meals on wheels to be delivered.

He's washing and taking care of himself and has only occasionally missed pills but when we call he's taken them as he's been asleep and not heard the reminder.

My biggest worry this stage is his confusion and memory loss upsetting him and making sure he has his coat. I've tracked him down twice this past week to make sure he had a coat on, which he has.

We are looking at homes during the Christmas break but we also have the option of getting daily home help in too, which we haven't got yet. I guess a lot is going to ride on what we see over the Christmas break. We are very lucky as I don't work so I'm available.

It's hard. We don't want him upset as this makes him more stressed and more confused, however he's seen what a home environment did to his dad and father in law when mum and dad couldn't care for them any more. All the time he has mental capcity he is entitled to make the choice to remain as independant as he can and we have no option other than to support that and do all that we can to help.

 

[nmintueo]

Waterdrinker you are trying hard like we did to convince yourself he can stay where he is. You have to accept that there will come a time where this will simply not be possible...

Well, I don't think anything Water drinker says constitutes denial that things may get to that stage.

The measures she's described sound very interesting and I'm sure they'd be useful to many people at some stage. I'd certainly like to know more about them.

 

[JenniferW]

My mother also lives alone, in her own home - the house she's lived in for 20 years or so. At present she has a certain amount of input to make living in her own home viable - from family members and carers. This may work for longer rather than shorter just because it is a familiar environment which works well in a lot of ways. So various things in this thread are helpful - even just hearing about other families going along this path.

One important thing for my mother is her large garden - which she potters around in in all but the worst of weathers. I talked a while back with her about the possibility, and risks, of wandering, and she made the very sensible point that wandering around the garden wasn't going to put her at any great risk - and she's right. What harm she might come to from hours outside unsuitably dressed, I think has to be balanced against the pleasure she gets from simply being outside in an environment where she cannot see another building.

Like others doing this, we're trying to think ahead and set up various things before they're really needed, while getting used to them is still feasible. I didn't know about electronic pill dispensers that text you if he the pills haven't been take - what an amazing invention! We must look into that.

I think what we find most difficult is the sort of second-guessing we have to do for everything - piecing together the evidence to work out what can and can't still be coped with and then developing strategies for meeting the needs. Asking direct questions never gets anywhere near the truth! Is this typical of everyone with Alzheimer's?

 

[ITBookworm]

I think what we find most difficult is the sort of second-guessing we have to do for everything - piecing together the evidence to work out what can and can't still be coped with and then developing strategies for meeting the needs. Asking direct questions never gets anywhere near the truth! Is this typical of everyone with Alzheimer's?

Certainly true for FIL anyway. If he were to believed he cleared the snow on the drive the other day (after overdoing the same thing last year and hurting his back ). What actually happened, when we spoke to one of the neighbours, was that FIL started and when one of his other neighbours' lads (well early 20s) saw him he took over and finished it. Even when asked directly, FIL was the one who had cleared the drive.

His eating habits are monitored by checking his fridge and the bin against the weeks supermarket receipts. We think he is still doing the clothes washing Ok since the contents of the washing machine change from one week to the next. Sadly I wouldn't like to think when the sheets were last changed but stripping the bed with him protesting beside me would distress him too much at the moment.

As for strategies to help him !!!! In the kindest possible way FIL is (physically) as tough as old boots and as stubborn as a mule! Anything at all that would suggest that he can't cope is a massive NO. We are very close to having to try some way of getting his medication monitored but how we persuade him

 

[JenniferW]

... as tough as old boots and as stubborn as a mule! Anything at all that would suggest that he can't cope is a massive NO.


Your description really cheered me up! It does actually help to realise you're not the only one struggling to deal with this sort of situation!

One symptom my mother has is deja vu - she's seen all sorts of things and people before which are in fact completely new. Her GP commented that some people with epilepsy also have this, so I went searching online for information about it and found some people with schizophrenia also have it. The suggestion is that for all of them, the same brain mechanisms have been affected by their particular medical conditions, resulting in the high occurence of deja vu experiences. In reading about that it helped me to realise that effectively my mother has delusions - I'd just never really seen it so straightforwardly before.

And I have to say the supposed specialists in the memory clinic have been no help in this direction. All they ever refer to is loss of short-term memory, whereas the mental effects of Alzheimers strike me (from my mother's case) as a lot, lot more complex than that. I've studied enough psychology in the past to have some understanding of what short term memory loss means, but it really does strike me that there's a lot more to this than that - qualities the professionals we've been dealing with so far seem to show little interest in, and certainly never talk with us about.

 

[Delphie]

One symptom my mother has is deja vu - she's seen all sorts of things and people before which are in fact completely new. Her GP commented that some people with epilepsy also have this, so I went searching online for information about it and found some people with schizophrenia also have it. The suggestion is that for all of them, the same brain mechanisms have been affected by their particular medical conditions, resulting in the high occurence of deja vu experiences. In reading about that it helped me to realise that effectively my mother has delusions - I'd just never really seen it so straightforwardly before.

How interesting. I've noticed exactly the same thing with my mum this year. She often recognises people and places that are definitely completely new to her.

She often comments on this and I thought it might be a kind of a coping mechanism, a way of reassuring herself. Now you've said the above I'm going to do a bit of reading around it.

 

[JenniferW]

How interesting. I've noticed exactly the same thing with my mum this year. She often recognises people and places that are definitely completely new to her. ... I'm going to do a bit of reading around it.

For a long time, this was was one of those symptoms which made you wonder who was the one with the brain problems!

When I tracked down some information about it, I gave it to my mother. For some years she worked in healthcare and I've known her read all sorts of medical articles at various points in her life - including about illnesses and ailments she herself had. But with Alzheimer's she never says a thing about what she's experiencing - and this was also an example where trying to talk about it with her seemed to meet with almost blank incomprehension. This isn't really a problem for me sort of reaction.

Going back to the start of this thread, I think this can be very difficult for people like us who are the support for enabling the person with Alzheimer's to actually continue to live on their own in their own home. You feel you get no help from them at all in making it work, when you really do just have their best interests at heart and you're desperately bending over backwards to respect their wishes.

 

[Delphie]

That's exactly it Jennifer. It's hard not to feel resentful sometimes. Well, I know I feel resentful sometimes! I've lost count of the hours I've spent sorting out mum's life behind the scenes and I know I'm considerably poorer this year simply because I don't have enough time or energy to take on work. I can live with not being thanked. I don't expect that. But it's hard when my reward is anger and being accused of whatever's flown into mum's head that day.

To be honest, I'm not sure I would've coped this year without the SW's help. She's been a fantastic emotional support and has never judged. I've been very lucky on that score.

 

[JenniferW]

... It's hard not to feel resentful sometimes. Well, I know I feel resentful sometimes! ... hard when my reward is anger and being accused of whatever's flown into mum's head that day. ...

One of the things that I know does enable me to cope with supporting my mother (and I'm only part of the team doing this) is remembering how I treated my mother when I was a teenager! I remember being accused of treating home like a hotel with all meals provided, etc, and it was absolutely true!

So now, when I feel my mother's just taking it for granted that we'll some how look after her and make it all work out all right, I wonder if she's actually not much different to how I was then!

I'm sure she's not unique, so I start asking myself whether this is actually what's normal for everyone and anyone when they find themselves with something like Alzheimer's. Maybe the condition just makes us all see some of the less attractive side of human nature?

My sister and I talk about it a lot because neither of us has children. If we were to end up getting Alzheimer's, neither of us would have any family to depend on for any sort of care - we'd have to make the best of whatever other resources there are, which I'm sure will be as little if not less than there are now.

 

[Water drinker]

One of the things that I know does enable me to cope with supporting my mother (and I'm only part of the team doing this) is remembering how I treated my mother when I was a teenager! I remember being accused of treating home like a hotel with all meals provided, etc, and it was absolutely true!

What a brilliant idea Jenifer and one I'll be squirelling away for future use

 

[Delphie]

One of the things that I know does enable me to cope with supporting my mother (and I'm only part of the team doing this) is remembering how I treated my mother when I was a teenager! I remember being accused of treating home like a hotel with all meals provided, etc, and it was absolutely true!

So now, when I feel my mother's just taking it for granted that we'll some how look after her and make it all work out all right, I wonder if she's actually not much different to how I was then!

That makes sense!

I think about it sometimes and can't decide if it's easier or harder to care for a parent one's close to and wants to pay back in some respects, if that makes sense. I love my mum but we're very different people and I left home very, very young, and even before that brought myself up to a large extent. I don't have a large reserve of memories of her mothering me and I think that complicates how I feel about being cast in the role of carer now (especially as she really does take out all her anger and delusions on me).

Obviously, I do know I have the option of walking away and leaving her to the social services but there's no way I could realistically do that because love's definitely there and with it brings a sense of duty. And I couldn't stand the thought of her not being looked after properly and I think I'd probably imagine all kinds of horrors if I withdrew.

So I plod on, and when I've the energy I sometimes have a look at how very complex, emotionally, the situation has become. We've gone from over 30 years of occasional phone calls and even less occasional visits to me being almost totally responsible for her welfare, especially as she is still living at home (where she wants to be as there's absolutely nothing wrong with her so why am I interfering in her life ).

I do go on, don't I!

 

[JenniferW]

That makes sense!

... I don't have a large reserve of memories of her mothering me and I think that complicates how I feel about being cast in the role of carer now ... ..... the option of walking away and leaving her to the social services but there's no way I could realistically do that because love's definitely there and with it brings a sense of duty. And I couldn't stand the thought of her not being looked after properly .......... years of occasional phone calls and even less occasional visits to me being almost totally responsible for her welfare, especially as she is still living at home (where she wants to be .....

This post has been really encouraging for me - it really does help to hear about other people in similar situations.

I go to a local Alzheimer's Society carers' coffee morning, and have met up with only one other person not caring for a partner / husband / wife. Each of us, when we met, said how nice it was to meet someone else in the same boat! We have the impression other people we meet somehow assume it's 'easier' for us because we don't actually live with the person who has Alzheimer's. I feel they have little understanding how different it is to find yourself as a carer for someone you never made any choice over being related to! To me, it does feel very, very different to be caring for a parent that you effectively 'separated' from many decades before. For most of my adult life I had very, very little contact with my mother - and was happy for it to be like that! I've now become a joint-carer with my sister because it's my sister that I'm actually fond of, not my mother.

 

[Delphie]

This post has been really encouraging for me - it really does help to hear about other people in similar situations.

It's the same for me. I read this forum for quite some time before joining and got a great deal simply from seeing how other people cope.

 

[Water drinker]

It's the same for me. I read this forum for quite some time before joining and got a great deal simply from seeing how other people cope.

Me too.

I know everyone understands how petrified we are about what's to come and the thought that things will only get worse.

There's only so much the leaflets can tell you. There's no substitution for hearing the stories of others in the same boat.