Alzheimer's Disease

[charlie clown]

First off, I’m not posting this for sympathy etc. Instead I wanted, on the one hand, to post something in order to offload and, on the other, in case anyone else is dealing with similar it might help to share a few experiences. Sorry if that means this comes across as tediously self-indulgent if you’re not in the dementia Venn Diagram. And further apologies that this is a long post. As I say, I’m just venting really.

Anyway, basic situation is that my wife, Anne, a retired nurse, and I decided late last year to take on the care of my wife’s mother who, as of November last year, could no longer care for herself due to advancing Alzheimer’s. Her dementia had been steadily increasing for two or three years before that but only really became difficult to manage when her husband, my wife’s dad, fell ill during the second half of 2018 and eventually died just before Christmas of that year. After a brief spell in a care home to stabilise her, she then went and stayed with her son, my wife’s brother, over Christmas last year but since then she has lived with us.

When we agreed to her living with us the plan was that her son, my b-i-l, would have her back for a couple of weeks every six-to-eight weeks or so, so that we got a break on a regular basis. Within a couple of weeks of her arriving at ours he told us that he had no intention of having her back under any circumstances.  So we are left having to care for her full-time. I am f***ing furious at him for completely abandoning both his mother and pushing all of her care on to my wife as well as the total 24/7/52 disruption to our home life that that has entailed.

Since lock-down this has of course become even worse because we have now had ten weeks or more of being more or less complete prisoners in our own homes and with no respite care options available at all because all of the local care homes are closed because of Covid-19.

So we just slog on. She is noticeably deteriorating on something like a fortnightly basis. The sort of things that we are seeing and dealing with are incontinence; complete inability to do even basic tasks without constant supervision (dressing, washing, brushing teeth etc.); paranoia (“you’re selling my house behind my back”, “money’s gone missing from my purse”);; delusions (“I’m leaving now because I’m going to see my father” - he’s been dead thirty-odd years, “where are the carers who were on duty this morning?” – of course there weren’t any, it was us); my wife is always being told that she is not Anne, she is someone else e.g. a carer or her own sister (she doesn’t have one);  there are daily tantrums, insults, the constant repetition of the same conversations (always based on misunderstandings or hallucinations (“is that a lorry in the back garden?”, “how many children can you see in that tree?”); the inability to finish sentences, leading to constant frustrations in failed communications; endlessly waking up 6, 8, 10 times per night and disrupting everyone’s sleep… it just goes on and on. That’s not the full list but you get the picture…

I can detach a wee bit because I have my work to get on with so can legitimately shut myself off in another room for a few hours at a time, but my wife is living with it constantly with no escape, largely because her mum can’t be left on her own for five minutes otherwise she immediately starts getting agitated and starts wandering around the house. She is always trying to climb the stairs (which she can’t do without supervision because she is so unsteady on her feet). It’s like having an uncontrollable, adult-sized toddler that we are having to care for in every waking moment.

I’m hoping that after lock-down, as and when the care homes re-open, we‘ll be able to put her in one to give us some kind of regular break, but until then we have effectively completely lost control of our own lives because everything centres on her.

Because of the abuse she suffers from her mum and the sheer physical and mental slog of it, my wife has emotionally distanced herself to the extent that she is not looking at her mother as her mum anymore and instead is just treating her as a care case requirement. As awful as it sounds, our shared view now is that if she were to become ill and die, it would be a relief more than anything else. We would of course continue to care for her as best we can but if I‘m honest, for both of us, it feels like it can’t some soon enough. Her mum has a miserable life and it is making our lives miserable too. The ‘problem’ is that despite the dementia and the physical unsteadiness, her mum is in pretty good overall physical health, rarely ill or sick with anything else so this could potentially go on for another decade…    

In short, it’s a horrible disease. The toll it takes is way beyond the person with the disease though.

And as an aside, I remember when Finding Nemo came out and Alzheimer’s ‘experts’ were saying how great it was to see a kind of positive and accurate depiction of dementia in the character of Dory. I think that is an utter f***ing travesty. It is not some kind of benign forgetfulness. It is a devastating and savage stripping away of the dignity and capability of a human being and a relentless and full-on attack on those who care for them.       

As I say, I’m not looking for sympathy or anything, just wanted to offload and share a few realities of a horrible disease and situation. Thanks for reading.

Edited June 10, 2020 by charlie clown

[Swan Red]

James, you need to consider who is actually benefitting from you and your wife taking on her care because this is not sustainable. 

[Sion]

9 minutes ago, Swan Red said:

James, you need to consider who is actually benefitting from you and your wife taking on her care because this is not sustainable. 

Yes I would echo that.

My grandad was in a similar, albeit not as developed, state many years ago.

His daughters all offered to care for him and would say things like 'my dad isn't going in a home whilst I'm alive' but when the reality of his care hit home they soon changed their mind. 

I think ultimately they (as in the person they were before this disease) wouldn't want you to be living such a miserable existence to care for someone who is not even them anymore. So whilst there's likely a lot of guilt about placing people in Homes, in these sort of situations it is completely justifiable and I would actively encourage it based on my experience. 

 

Also just to add I'm sorry you're having to go through this. Especially at the moment. 

Edited June 10, 2020 by Sion

[cymrococh]

13 minutes ago, Swan Red said:

James, you need to consider who is actually benefitting from you and your wife taking on her care because this is not sustainable. 

This is what it came to with me and my mum (not alzheimers), it would not be an exaggeration to say that my being solely responsible for her care was making everyone involved's existence much worse. It's so hard to make these kind of decisions with your parents, but try and reach out for help and be kind to yourself (and more importantly your wife).

Trying to run two households was f*cking bonkers, f*ck knows why those bigamist lorry drivers do it.  

[charlie clown]

Cheers guys, believe me, if we could get her into a home at the moment we would do it like a shot. We both recognise the need to break from it but it is pretty much impossible currently. Until the care homes re-open it's just a grin and bear it situation.

[muleskinner]

@charlie clownCare homes in my area are all accepting new residents once a C-19 test has been done. I'm at the stage of having to make the call regards my mum, its becoming unsustainable even with carers going in. Can only wish you all the best with the situation and whatever you decide to do.

[cymrococh]

25 minutes ago, charlie clown said:

Cheers guys, believe me, if we could get her into a home at the moment we would do it like a shot. We both recognise the need to break from it but it is pretty much impossible currently. Until the care homes re-open it's just a grin and bear it situation.

A friend of mine ended up in a situation where she felt she had to refuse to take her mum home out of hospital in order to get care. I was starting to think I would have to do that at one point.

Keep social services updated/engaged as much as you can.

[Gethin]

I don't have anything constructive to add but good luck with it all CC. Alzheimers is a b*****d of a disease - hope you can get some help for you and your wife soon

[charlie clown]

4 hours ago, cymrococh said:

A friend of mine ended up in a situation where she felt she had to refuse to take her mum home out of hospital in order to get care. I was starting to think I would have to do that at one point.

Keep social services updated/engaged as much as you can.

Yes. If only. We’ve been waiting since January for social services to visit to do an assesment.

[Case]

clown - I've nothing new to add except that the Mum of a really good friend of ours has been in a care home on Skye for a little under a year. She has severe Alzheimer's. I remember her very well before she was ill, and, at a distance, saw her degrade slowly. Our friend has an older sister and brother. Her sister tried having her parents live with her for a short time, but it didn't work. Her brother didn't. Our pal had them living with her for about 18 months before the decision to move her into a home. Obviously, this caused a big issue with her Da, who is still around, and had a breakdown as part of the decision, where, I believe, he was overruled by the two girls.

None of this is relevant to you, except perhaps this - This woman is no longer my friends mother by anything other than DNA. There is no love from the woman to her daughter, just confusion, fear, anger... you and your wife know this better than I can express it. My pal really tried, as you've done, no doubt, but she was also firm when it got past the point where her clinical ability to cope out of love for her mother had passed. Then she got clinical in the other sense of the word. We chat regularly with our pal - she's in our weekly Zoom pub group, and does quizzes with my wife and she's good. Absolutely certain the decision she took with her Mum was the right one. 

So yes, of course, for the sake of your wife in particular, it has to be just a case of waiting for the day. Do all the prep you can now to the point of asking what you have to have ready on the day she moves out. Then do it, breathe, listen to some vinyl for a day or so, have a pint, then obviously check in and up on her and repeat.

Heartbreaking stuff. 

Good luck.

 

 

[charlie clown]

Cheers Case - your middle paragraph in particular strikes a chord. I think my wife is developing a kind of carer's Stockholm syndrome. When we have bad days she is all for calling in social services and getting her mum into a home, on the better days (there are never any good days) she starts on the "well, its not so bad today, I can cope if it's like this" kind of kick. Somehow forgetting that having her mum here at all is a massive intrusion into our life and is preventing my wife from developing any of her post-retirement plans.

[kop205]

charlie, like downunder in the life thread, you don't need to say that you aren't after sympathy cos you deserve some for a s*** situation and people will want to have and give it. Sorry things aren't good.

The “how many children can you see in that tree?” line did kind of make me laugh in amongst it all, just for its sheer wackiness.

But what you describe is awful and you should have ni guilt for feeling as you do.

[D.Boon]

Having gone through this with my Mum in a home I can only imagine how heartbreaking, exhausting, infuriating and endless it must be to try to deal with all day every day. Good luck CC and don't beat yourselves up with wanting some time out from it.

[charlie clown]

Haha - thanks guys, but, honestly,  I'm not beating myself up about wanting out of it; I'd put her in a home tomorrow morning if circumstances allowed. It's the missus I'm more worried about as she seems to be now just rolling with the punches instead of taking a sensible view of things. I'm not taking up that discussion with her at the moment because on the the one hand there's no obvious and available remedy just now and on the other, more stress is the last thing she needs.

[Guatered]

Hi Charlie Clown,

It sounds like you and your wife are doing heroic work. 

I agree with the points made above that finding a care home would provide much needed relief for you. We went through a very traumatic couple of years with my father in law with dementia. He never came to live with us, so I can't claim to have experienced all that you have, but it did dominate our lives for a period. It's hard to overstate what a difference it made when we found a good care home for him. The staff and management of the care home were magnificent and it made the last couple of years for him comfortable - the best that can be hoped for - and gave such relief to the rest of the family. I honestly don't know what would have happened without them.

You mention that your wife has emotionally distanced herself from her mother, and we had a similar experience. If I can offer one small positive from the past year, it's this. My wife adored her dad, he was a wonderful man. But for his last few years, as the dementia progressed, that man that she loved was gone, and the memories of what he was like when he was younger got crowded out. However - after he died, we had a really lovely funeral, where so many friends and family came and shared beautiful memories of him. And now for my wife, when she thinks about him, she doesn't think so much about the last few years, but instead has been able to remember the man that he was before this horrible disease struck him. This has given her great comfort.

Best of luck for getting through this next period. 

 

 

 

 

[New York Red]

Heartbreaking situation Charlie. Don’t beat yourself up over the decks that you absolutely have to make. And good luck in convincing your wife of the same. They are are tough but necessary decisions.

All the best mate.

Edited June 12, 2020 by New York Red

[Ed the Wool]

Hope you can get some help soon James. We went through the same with my gran. Unfortunately for her, she had the heart and lungs of an ox, which meant she went on for years when there was absolutely nothing left of her, and I think what you are describing about the distancing is more common than you imagine. 

No-one really understands consciousness, but we'd like to think about 99% of her had gone a couple of years before she finally died. It seemed that way to us.

Are you in still in Warrington? The local authority were actually really good when we couldn't care for her any longer, and we had the same experience with my Dad last year when he was in his final few weeks. 

Look after yourselves.

Ed

 

 

 

[smithdown]

WT

Edited June 12, 2020 by smithdown

[Dan]

Really sorry to hear this mate. I have nothing to offer but sympathy I'm afraid. Sounds horrific for you both. Hope things improve soon so you can at least get a but of respite. Your BiL sounds like a complete w@nker.

[charlie clown]

10 hours ago, Guatered said:

You mention that your wife has emotionally distanced herself from her mother, and we had a similar experience. If I can offer one small positive from the past year, it's this. My wife adored her dad, he was a wonderful man. But for his last few years, as the dementia progressed, that man that she loved was gone, and the memories of what he was like when he was younger got crowded out. However - after he died, we had a really lovely funeral, where so many friends and family came and shared beautiful memories of him. And now for my wife, when she thinks about him, she doesn't think so much about the last few years, but instead has been able to remember the man that he was before this horrible disease struck him. This has given her great comfort.

 

That's really nice. Great that your wife has been able to kind of reconstruct her image of her dad. It must really help the grieving process when so may people can validate your own view of the person who has died. 

In contrast this might sound a bit cruel and heartless, but I honestly can't envisage that anyone would do something like that for my m-i-l. She is a lovely woman, and has been a massive help to us over the years with childcare etc. and my three kids love her dearly, but even at the best of time she was pretty dull, has no interests or hobbies, always has a glass half-empty view of any situation. Even her best, life-long friends look at her with a bit of a <roll-eyes> because she is so lacking in any kind of enthusiasm for anything at all. So of course we'll miss her when she's gone but I don't think anyone, my wife included, will be saying "yeah but think about what she was like in the good times" with any kind of conviction.   

 

[charlie clown]

2 hours ago, Ed the Wool said:

Hope you can get some help soon James. We went through the same with my gran. Unfortunately for her, she had the heart and lungs of an ox, which meant she went on for years when there was absolutely nothing left of her, and I think what you are describing about the distancing is more common than you imagine. 

No-one really understands consciousness, but we'd like to think about 99% of her had gone a couple of years before she finally died. It seemed that way to us.

Are you in still in Warrington? The local authority were actually really good when we couldn't care for her any longer, and we had the same experience with my Dad last year when he was in his final few weeks. 

Look after yourselves.

Ed

Yes, still in Warrington, but not getting much support from social services at all. The nursing & medical support by contrast has been great, social services not so much. I'm hoping that's at least in part due to lock-down but I guess  we'll find out soon enough as things start to ease. We called them last week and they were promising that they would arrange a visit and assessment but as far as I'm aware we've not hear anything further beyond our enquiry.

And, yes, these old women with madly strong constitutions like your gran can just keep on going for years even when there is no trace of the person left in the body. It's one of the most difficult things about the disease I think.

[charlie clown]

Social Services are finally coming in tomorrow to do an assessment and then find her a place somewhere suitable, even if it's only temporary. We're all dead on our feet at the moment so it can't happen soon enough. Fingers crossed that nothing causes any blockers.

We've decided not to tell her until tomorrow morning, partly because if she knows someone's coming in to see her tomorrow she'll be up all night asking us to get her ready for her appointment and on top of that, although this is a wee bit manipulative, she will likely kick off when we do tell her so we thought to best to light that particular blue touch-paper as close to the time when the social worker is coming in as possible so that they see the full gamut of distressed and distressing behaviour. Tomorrow may well be brutal but at least there is potentially a bit of light at the end of the tunnel.

[Tosh]

I'm sure if you'd been asked in the cold light of day "could you do this?" back before it all started, you'd answer "no" but here you are, like a frog being boiled. I know my answer would be "hell, no" but likely I'd do what you've done and roll my sleeves up. Chapeau!

Must be heart-wrenching on top of what it's doing to your relationship. it's grim enough just reading it.

[Gethin]

I know it's not going to be pleasant but that's great news CC - fingers crossed for you and the missus getting some respite from it all.

[charlie clown]

Thanks Tosh - funny thing is that I think we would both do it again if it was under the conditions that we were supposed to have been working under in the first place i.e. a fortnight's break every six weeks or so whilst she went and stopped with the b-i-l and then a couple of days of day-care, maybe an occasional overnight stop, in between to give us a chance to meet up with friends in an evening etc. Of course a combination of b-i-l being a t*** and Covid buggering up the care home options has meant that was never to be. Hey ho.

And yes, Gethin, I've almost got a spring in my step this evening thinking about what tomorrow might hold. Don't want to build my hopes up too much though. 

 

Edited June 15, 2020 by charlie clown