Friend has dementia (not MS)

Everyday living
1

A while ago, I mentioned a friend who was unexpectedly getting divorced.

Well, in one way, I was not surprised, as I wasn’t convinced it had ever been a match made in heaven.

But since then, more has gradually been coming out about the circumstances. Seems they are not divorcing over any row, or irreconcilable differences. He is divorcing her because she has dementia!

Now as someone who already has an incurable illness, which can and does cause cognitive difficulties on occasion, I was probably better placed than most to relate to this. It was a blow, of course, but I thought: “Ho-hum, I’ve got MS; she’s got dementia - between us we’ve got one able person…sort of!”

But I’m really shocked by just how much worse she’s got, how quickly - MUCH faster than my MS. I’ve just been out to lunch with her - first in-depth time I’ve spent with her since all this came to light - though I’ve spoken to her on the phone several times, and seen her briefly. She was nicely dressed and beautifully made up, as usual, but sadly changed. We were supposed to be meeting round mine, to go out.

My phone rings: “Where the hell are you?”

Thinking it must be me that goofed, and maybe I was supposed to meet her there, I replied: “At home! Where am I supposed to be?”

“Well why aren’t you answering the bloody door, then?”

Strange… There’s no-one at the door, no car outside. Turns out she’s pulled up at a house several doors away, and is knocking on the door there! She hasn’t noticed it’s NOT my house, even though she’s been here many times over the years, and was last here only the other week. It hasn’t dawned on her anything seems strange or not right - she’s even suspected me of arranging to meet her and then going out, but at least she had the presence of mind still to realise: “No, no, T wouldn’t do that - it must be something else!”

So luckily, I went out in the street and found her, but I’m really worried about whether she should be driving (apparently she was OK’ed by her neuro…But?)

Obviously, I didn’t want her to be upset or frightened by what happened. She said: “Oh! I don’t know how I did that!”

So I made light of it as best I could, and said - not entirely untruthfully: “Don’t worry, I’ve done stuff like that before.” (I have been somewhere I knew, and suddenly couldn’t remember the shortcut home, and has to walk twice as far the long way).

We did have quite a nice lunch, although she repeated several stories she’d already told me, and asked questions she’d already asked, but couldn’t remember what I’d said.

When she got up to find the ladies in an unfamiliar building, I was a bit worried in case she shouldn’t really go by herself, and would get lost. But I thought I mustn’t act as if I don’t trust her to go to the loo, and sat there anxiously looking at my watch, wondering exactly how long to leave it, before going to investigate, to see if she was alright.

She did come back OK - but only after quite some time. I wondered if she had been wandering the building a bit before finding her way back to the table.

All this is in the space of just a few months. I suppose, looking back, she was always occasionally vague, such as having a bizarre belief I must know ALL of her friends, despite only ever having met perhaps two of them. It’s really fast and really scary. She hasn’t talked about whether she is scared, but she must be. I know I’m scared about potentially waking up unable to see or walk, but worrying about losing all your memories and sense of self must be even worse.

I suppose I’m not really looking for help or advice. Just wanted to tell someone this has happened. My friend is considerably older than me, but can pass for much younger, so I’ve never really given much thought to her age, or that she might get ill. She’s still a bit young for dementia, but not so young it’s exceptional.

All very worrying. Never thought she would be sicker than me, sooner than me. In fact, until quite recently, I’d been thinking of appointing her as my attorney in the event I become unable to manage my affairs, as she is a qualified solicitor, and would have been ideal. Obviously, that’s completely out of the question now, as she can’t manage her own.

All very sad, and very sudden.

Was pleased to see her in one way - it’s nice she can still dress up and go for lunch.

But got home and felt like having a damn good cry.

We’ve not always been close - she’s one of those friends who’s only ever in touch if there’s not much better to do. But somehow it HAS survived nearly 20 years. Now this!

Tina

x

2

hi tina,

i’m sorry about your friend, my mother had alzheimers and, since then, it’s been the health problem who’s potential has terrified me most. i remember being so scared of the idea of having cancer when i was young, but seeing my parents die, one after alzheimers and the other of cancer, i now see things very differently to my youth. you coped so well with your friends altered behaviour, and it’s all that you can do really… cope. it’s horrific that your friends husband is divorcing her because of her dementia, he’s beyond contemptible, it’s a pity she can’t sue him for breach of ‘in sickness and in health…’ ‘contract’. it sort of puts our ms into stark contract, i suppose.

wendy x

3

Thanks Wendy, I’m horrified I’m already losing her. We talked about going for lunch again, but I’m wondering just how long she’ll still be OK to be out and about, let alone driving. I’m a non-driver, and was a bit nervous about getting in the car with her, after the “wrong house” incident. This was my first proper chance to observe at first hand how serious her difficulties are - not being able to find my house, or even recognize she was knocking at the wrong door, made me realise straight away it’s not a mild eccentricity that could be fine for many years yet. It’s a really drastic deterioration in cognitive function in quite a short time (months). It’s quite a complicated thing with the husband. My friend has been married several times (not quite Liz Taylor numbers yet, but you get the picture). She only married the latest about seven years ago. Whilst I don’t think any of those factors mean he was entitled to treat it as a “disposable” marriage - ill health is always one of the risks of the deal - especially later in life, when it could have been him OR her, I’ve often suspected they married for reasons other than love. Lots of people do - especially when they’ve both been married before, and aren’t getting any younger. So I’m not saying that in itself was wrong - it may have suited both of them. But if he was expecting a companion and someone to cook his dinner, well into old age, a partner with dementia would be very different from what he’d thought he was getting. As people with chronic ill health ourselves, I’m sure we all regard it as unacceptable for partners to shove us on the scrapheap, but I could tell just from having lunch with her, the difficulties he must have faced. He has probably been quite upset about it, because he did seem a decent bloke. But perhaps he just felt there was no way he could cope with her increasingly confused and erratic behaviour. I haven’t even told you that she pestered me about 20 times last week, to come over and help me with the housework (so far, she DOES remember I have MS). I was reluctant, but eventually figured it might be win-win; I get a clean house, she gets a bit of a confidence boost from knowing she was still able to help someone. So I agreed. With that, she didn’t turn up! I did much of the housework by myself, waiting in vain for the cavalry to arrive. When I spoke to her, she did seem to know she’d promised to come round and help, but I wasn’t very clear whether she totally forgot, or just decided to do something else. It seemed very weird that, after someone’s literally been pestering all week, to the point of becoming a bit of a nuisance, they didn’t show up! I doubt I’ll ever know the real reason, or whether it was part of her condition. I just need to accept this sort of weirdness is becoming more common. Her husband probably found the same. :frowning: T. x

4

Thanks Wendy, I’m horrified I’m already losing her. We talked about going for lunch again, but I’m wondering just how long she’ll still be OK to be out and about, let alone driving. I’m a non-driver, and was a bit nervous about getting in the car with her, after the “wrong house” incident. This was my first proper chance to observe at first hand how serious her difficulties are - not being able to find my house, or even recognize she was knocking at the wrong door, made me realise straight away it’s not a mild eccentricity that could be fine for many years yet. It’s a really drastic deterioration in cognitive function in quite a short time (months). It’s quite a complicated thing with the husband. My friend has been married several times (not quite Liz Taylor numbers yet, but you get the picture). She only married the latest about seven years ago. Whilst I don’t think any of those factors mean he was entitled to treat it as a “disposable” marriage - ill health is always one of the risks of the deal - especially later in life, when it could have been him OR her, I’ve often suspected they married for reasons other than love. Lots of people do - especially when they’ve both been married before, and aren’t getting any younger. So I’m not saying that in itself was wrong - it may have suited both of them. But if he was expecting a companion and someone to cook his dinner, well into old age, a partner with dementia would be very different from what he’d thought he was getting. As people with chronic ill health ourselves, I’m sure we all regard it as unacceptable for partners to shove us on the scrapheap, but I could tell just from having lunch with her, the difficulties he must have faced. He has probably been quite upset about it, because he did seem a decent bloke. But perhaps he just felt there was no way he could cope with her increasingly confused and erratic behaviour. I haven’t even told you that she pestered me about 20 times last week, to come over and help me with the housework (so far, she DOES remember I have MS). I was reluctant, but eventually figured it might be win-win; I get a clean house, she gets a bit of a confidence boost from knowing she was still able to help someone. So I agreed. With that, she didn’t turn up! I did much of the housework by myself, waiting in vain for the cavalry to arrive. When I spoke to her, she did seem to know she’d promised to come round and help, but I wasn’t very clear whether she totally forgot, or just decided to do something else. It seemed very weird that, after someone’s literally been pestering all week, to the point of becoming a bit of a nuisance, they didn’t show up! I doubt I’ll ever know the real reason, or whether it was part of her condition. I just need to accept this sort of weirdness is becoming more common. Her husband probably found the same. :frowning: T. x

5

Oh, sorry - network problems - didn’t mean to post twice. It’s not that I have dementia - I don’t think. :s

6

so sorry tina

i always thought of ms as a sneak thief but dementia is far worse.

take care of yourself too

carole xx

7

How sad for you Tina,to watch your poor friend go downhill so quck,maybe she has that type that is very aggressive,the names 'lewey body ’ demntia or something, like that ,i have read about it,June Browns husband(eastenders Dot cotton) had it and his was very aggressive,my dad had parkinsons and then got dementia too,its so hard watching family and friends who suffer this way.

J x

8

How old is she hun? Pre senile dementia is quite fast you see as is lewy body. If you’ve big concerns might be worth contacting the community mental health team. So sorry to hear she’s having these problems and it’s very sad. I work in this field so see the most awful cases. Least she’s a good friend in you :slight_smile: xxxx

9

Hi all, To my great surprise, she is 65, so I don’t think it would count as early onset or pre-senile - although it might if she’s actually been going this way for some time, but it has only just become seriously noticeable. Looking back, there have been occasional things, but I’d always assumed she didn’t listen. Now I realise she might have been listening fine, but recall was going. We originally met on a law degree, where we had to learn literally hundreds of cases and decisions, so she must have been alright then (I couldn’t do it now, either!) I’d always known she was quite a bit older than me, but she’s very young in both appearance and outlook, so I never really thought just how big the gap might be. And once you reach a certain age, you don’t give much thought to how old your friends are, do you? You tend to meet people of all ages. She has a close family - the daughter is already in the NHS as a midwife, and one of the granddaughters is a social worker, so I think they’ll be pretty on-the-ball, and have involved the right people already. I don’t think it’s for me to step in and start involving community mental health - unless the family asked me, to help out - as I’m quite sure they’re aware. I did think it strange my friend didn’t want to return to independent living after her breakup, but instead moved in with family. But at first I assumed it was a money thing, and she simply couldn’t afford to set up again by herself until the divorce settlement came through. Then I realised she is probably already borderline for independent living, and as things can only get worse, it would be madness for her to strike out on her own, only to have to move in with family, or even residential care, just a few months later. It’s obviously not practical for her to return to living alone, as it has no future. I know anyone can get ill at any age - it happened to me - and perhaps I was a bit naive to think it couldn’t happen to friends - especially older friends. I suppose the shock is just that it seems so fast, and that I’d always (well, for the last 3.5 years since diagnosis) assumed I was the one at risk of losing my independence, but she’d go on forever. I was shocked she could no longer find my house, and was knocking at a stranger’s door, thinking I’d gone out and left her. I had anticipated some weirdness, but not as immediate and obvious as that. I was still kidding myself it might be quite subtle, and I’d barely notice at all. She’s still very active - more than me, I’d say - she walks the dog, goes swimming, does pilates, and is a member of two choirs. I know all this will help, for as long as she’s still able to keep doing it, but how long will she still be safe to drive? I’m a non-driver, and do find it very restricting as to what I can get involved in - especially evening activities, as public transport is limited to non-existent. And will she be OK even to walk the dog, if she might forget her way home? She’s certainly putting on a brave face, but unlike MS, she probably can’t even have much hope she’ll be one of the lucky ones, and progression might be very slow or very mild. As I understand it, it just doesn’t work like that - once you have it, there’s no such thing as “lucky” - you WILL become increasingly unable to care for yourself. There’s not even the consolation of telling yourself: “Well, I WOULD learn to use a wheelchair, and I’d still be OK”, because if it’s mental, not physical, aids or devices aren’t going to let you adapt and carry on. I realised I probably shouldn’t even give her a little scented candle I’ve been keeping for her for ages, as she might forget, and burn the house down with it. A candle is probably not a suitable present, in the circumstances. Maybe I should get one of those reed fragrancers, instead - no flame involved. It’s totally out-of-the-blue to even have to think like this. Tina x

10

Hi Tina

That’s so sad. There are no words that will comfort you. All you can do is continue to be a good friend to her and hope that she is blissfully unaware of what is happening to her. It must be so much worse for her poor family who have to cope with it every day.

I have a close friend whose mum has dementia and she feels as if she has already lost her mum. I count my blessings that although my mum’s body failed her, she was still my mum mentally right to the end. It must be heartbreaking when they don’t recognise their own children and grandchildren.

<>

Tracey x

11

Thanks, Tracey,

Unfortunately, she’s not unaware - at least, not yet. I suppose, in due course, she will be, but she must be at the most frightening stage, when she still knows what she’s losing. I can’t imagine how I would handle this. The thought of potentially losing my walking at some stage is scary enough, but (a) it’s only potential, and (b) my walking isn’t ME - or what makes me ME.

Contrast that with realising you will lose your own self, and that there aren’t any “ifs” about it - just when. It makes MS look favourable!

I think the family are struggling. My friend turned up here unexpectedly one evening the other week (she could still find the house then). I think the family were at the end of their tether, and basically told her to go round mine. That’s all very well, and I do want to be a good friend to her, but I too am ill, and can’t have her dispatched round here every time she gets too much for her own family.

At the moment, it was a one-off, but I’m hoping it’s not the shape of things to come. I’m not sure her family would even know I have MS, as she might never have mentioned it. I’m not very good at handling the unexpected, at the best of times. I don’t mind if she rings and we arrange to meet, but I can’t have her dropping in unexpectedly any time the family get fed up - it was that day I’d been to hospital, and was already absolutely exhausted from that!

I am OK with pretty much anything, if I know it’s happening, and can make sure to have a relaxing time before/afterwards (all about managing the spoons, isn’t it?) But I wouldn’t be able to cope with somebody with dementia just dropping in whenever.

I know I’m overthinking again, and worrying about something that may never happen. Once is hardly a pattern. But much as I sympathize with them - and, of course, my friend - I don’t want the family thinking: “Oh, we can just shove her off round Tina’s!” any time she gets too much. I really understand their need for a break sometimes, but I don’t think: “Pop round Tina’s!” is the answer.

I’d be fine if it was planned (as yesterday), but of course, it doesn’t work like that - the family can’t plan when tempers will get frayed, and they need relief quickly, so it’s easy to say: “Oh, go and see your friend!” It’s a very delicate line. I realise I may not have my friend very much longer - certainly not in the way I’ve known her 'til now - so I certainly don’t want to let her down in her hour of need. But dementia is VERY tough on friends and family, without any of them already having MS.

I foresee difficult times ahead. :frowning:

Tina

x

12

Hi Tina, this is makes me feel very sad, that your once above average intellingence (she had to be to make it as a solicitor, surely) friend is suffering with one of the cruellest conditions known to man, or woman, as in this case.

When you compare a person with a physical illness, to a person with rapidly progressing dementia, it can seem the former is the more favourable…of course both are horrendous. But when dementia takes hold, you know that person needs 24/7 watching, as they can easily get into severe trouble.

I`ve known several people who have had dementia and it is terribly sad, when a loved one doesnt appear to recognise their family…heartbreaking. My m-i-l didnt know me after almost 40 years! But there were times when we didnt know if she was acting up, just for attention.

No about your pals family.............I think you should speak to one of tem and let them know you have MS and are quite unwell at times. This would be a way of asking them not to just send her round when they want a rest fom her. I also think driving isnt a good idea, as she could forget where she is, mis-read road signs etc.

It is a huge worry for you.

luv Pollx

13

Hmmm, it must be frightening or her indeed. I’ve always said I can cope with MS as long as it doesn’t interfere too much with my cognition. Being stuck indoors isn’t so bad as long as you can still communicate and enjoy books, puzzles and TV/radio. Take away all those things and life would seem very empty. Knowing I was definitely going to lose those things would be scary. Tracey x

14

Unfortunately I know all about dementia, my poor dad has it, he got it when we was 60, he’s now 69 and me and my sister have a full time live in carer for him which is costing over £1000 a week. I’m only 32 myself so all this began when I was only 24. It’s devastating, and in about 7 months time his savings will run out and we will have to put him into a nursing home.

15

My grandfather has dementia. I know all too well how it goes. It’s been over 10 years and he’s in the last stage, something keeps him here, I have no idea what, but he’s still with us… I stopped seeing him a few years ago since he no longer remembered me and my presence intimidated him. Not only that, I didn’t want my memories of him to be over-written, if you know what I mean.

16

I am sorry to read of those with direct family experience. Yes, my poor grandad had it too, although in his case, it’s difficult to tell whether he had some form of alzheimer’s, or whether it was the cumulative effect of a number of strokes. Incredibly, as it seems to me today, I’m not sure he was ever formally diagnosed. But I do remember we had to stop him driving, when he was going round roundabouts the wrong way, and things like that. Also he told my nanna he would repair the fence, but made the most ramshackle, higgledy-piggeldy patch you’ve ever seen. So sad, as he had been a traditional cabinet-maker and French-polisher - very high level of skill. My nanna was unable to comprehend that someone so handy could no longer even fix a fence, and accused him of botching it on purpose, to annoy her. When things got worse, and he was eventually institutionalised, I remember being delighted when I said: “C’mon Granpop, you remember me, don’t you?” and his eyes lit up with what appeared to be recognition. Only for me to be brought back down to earth with a bump, when he replied: “Of course! You’re one of the nurses!”. :frowning: So I know all too well how it will go. The financial aspects of my friend’s care will not be my direct concern, of course, but I don’t know if she has come out of the divorce too well, or what resources the family has. I think they’re spending thousands on a granny annexe for her, which I’m not sure is wise, as I don’t know how long she’ll be able to use it. She’s talking about having her own spiral staircase. How long will she be safe on that? I think they’re harder than a normal staircase. I may have been looking too hard for things, but I thought her walking was less steady than when last I saw her. Not awful, but a bit like mine - not needing a stick, but slight problems keeping in a straight line. Anyway, sorry for droning on. It is what it is. She’s still able to read and watch films, for the moment, but it’s like a game of 20 questions trying to find out what she’s read or watched, as she doesn’t remember the names. “Mandalay” in fact turned out to be “Manderley” - Rebecca! Got to be almost psychic to get that one. Tina x Walking down a narrow path two-abreast was not easy, and I don’t think it was just me. She was veering about a bit, which was causing me to veer more, to avoid a collision. If it wasn’t so sad, I suppose it would have been quite funny - two drunken ladies picking their way down a path.

17

Sorry for paragraph order - bleepin’ Ipad.

18

You could`ve hooked arms down the path.

pollx