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  • Alzheimer’s. Tell me about it :(
  • Premier Icon kenneththecurtain
    Free Member

    TL:DR – dad diagnosed. Advice?

    Long version:
    We (brother, sister, mum, and I) started noticing about a year ago that my 68 year old dad was getting a bit forgetful. I then noticed (whilst helping him fix his boat) that his problem solving skills aren’t quite what they used to be.

    My brother is a psychiatrist so, while it’s not his specialty exactly, he was concerned and got my dad an appointment with a pal who works in that field. Dad has now been diagnosed, apparently at a fairly early stage (which is a slim positive, I suppose).

    He’s been put on some pills which he has been told will help delay the symptoms of the disease a bit, though not the inevitable decline. Progression of the disease thus far has been very slow, fingers crossed it stays that way but there’s no way of knowing.

    My mum is being fairly pragmatic about the whole thing, my dad is putting on a brave face. He has previous experience of relatives getting the disease, so I think he knows pretty well what he’s in for – his parents both died when he was a kid, but his aunts all got dementia/Alzheimer’s in the end.

    My brother and I both live within a 45 minute drive of my parents so will be around for support, and they know that. We both work full time though so ultimately the burden of care, when it comes to that, will mainly fall on my mum. She’s a champ, but I can’t imagine it will be an easy ride for her.

    Anyway, it sounds like, to put it bluntly, an utter arse of a disease. Has anyone got any helpful tips/advice/experience etc?

    Premier Icon twistedpencil
    Full Member

    Sorry to hear that. I don’t have a lot to add except be there for your mum.

    My granddad had dementia for many years, my grandparents though covered this fact up for quite a while and it took its toll on my grandma.  Be prepared for the ups and downs. As it got worse my granddad seemed to retreat into his past but strangely remember me. We had some great conversations at work, women and life that we’d never had before, but there were times he couldn’t remember me which were hard, and harder still for my mum, uncles and grandma, but I stress this was years into the disease.

    Good luck and when things are low, it’s the disease not your dad.

    Steve

    Premier Icon MoreCashThanDash
    Full Member

    You have my sympathy, very difficult thing to deal with.

    No direct experience yet, but mother in law is going for a diagnosis soon. A friend of my parents was on the delaying medication and it gave him a few more “good” years

    I guess things like power of attorney and any wishes he may have with treatment going forward need to be discussed.

    Premier Icon mooman
    Free Member

    Very sorry to hear this; you and your family have my sympathy too.

    I worked in a community social work team and most of my clients were related to dementia. I would only suggest getting his wishes all documented and signed now whilst he has capacity. Advanced decisions etc.
    That way it can avoid ‘best interests’ complications further down the road.

    Ps.
    There is a good programme on BBC called ‘Grandad, Dementia and me’ def worth a watch.
    For me the stand out point was It demonstrated the impact that stress has on exacerbating the symptoms of dementia. This is very important because behind every challenging behaviour there is an emotion driving it .. but due to the nature and often degree of the illness the person may not be able to communicate this.

    Premier Icon tjagain
    Full Member

    Practical stuff:

    Get a power of attorney sorted now. Its easy to do while the person has capacity, its a nightmare once they can no longer make decisions. It does not come into play until they have reached a point of lacking capacity. Also living will / advance directives if appropriate.

    Make contact with support services early so that you can have stuff in place / are on the books when needed. ( not necessarily now but do not wait until there is a crisis)

    Alzheimers society is a good source of support and advise and there are things you can do to alleviate things – memory aids, diaries, schedules etc

    For you: Have a good think about how much support you can offer. Everyone has their limits and those limits differ. There is no judgement in this. Its just how it is. If you end up doing things beyond your capacity then you end up resentful and angry and that is very destructive. Keep talking with the rest of the family to ensure that you do not fall out with each other. Keep everything open and honest. When you have reached your limits then you have done your best and have to be satisfied with that. Do not be guilt tripped into doing more than you can cope with
    Patience, humour and openness go a long way.

    Some of these things I suggest do not have to be in place now but are thoughts for the future as unfortunately cogitative decline is inevitable

    Support your mother and try to engineer things so she gets some time away from him ie you go over on a saturday afternoon so she can get out with her pals for coffee. It can be very isolating for the spouse. Also give your mum a safe space to vent and to unwind.

    Do not “baby” him. Just because you have dementia does not mean you cannot take risks and assert your independence. Thats a very tricky balance to achieve but on worth striving for. You dad is slowly losing his identity as the patriarch / man of the family. Try to leave him his dignity ie don’t stop him gardening if thats something he loves just because he mixes up the weeds and the flowers

    Reminiscence / scrap books / photo albums can be a great comfort to him. Hobbies as well – so do what you can to keep him going with stuff he loves. My pet hate is well meaning folk telling people with dementia ” you can’t do that you might get hurt / break something / not do it right” If necessary you go round after him and sort it but let him strive ( so long as its not overtly dangerous of course)

    Its a horrible illness and can be devastating in its effects on wider families. Work hard at the relationships with your wider family. Keep your sense of humour and keep talking to the rest of the family.

    good luck

    Premier Icon hot_fiat
    Full Member

    My heart goes out to you and your family. It’s a shit disease. My father in law was diagnosed two years ago @68, following a series of incidents over a much longer period. The diagnosis was a relief to be honest and it transpires that throughout the 9 years my wife and I have been together I’d probably never met the real man (“M”).

    M was and is a kind, gentle, caring and somewhat shy individual. His passion in life being rugby he was on a local team for his entire life as a hooker. We believe this, well the inevitable concussions, may have triggered the relatively early onset of the disease. Though that is just speculation on our and his specialist’s behalves as you can’t tell really.

    We see a variety of symptoms, most of which are at this stage in the “forgetful” category. What triggered our engagement of help though was the increasingly frequent incidence of paranoia. This can manifest itself in several ways: from exaggerated suspicion of strangers and people in crowds to the everyday actions of his wife “R” and family: “What are you hiding from me?”, “Where are you going now?”, “What are you feeding me?” We’ve also had delusions whereby he’ll think that he has to get up at 5am so the people can come and repossess the house.

    On the forgetfulness front we ran into an issue earlier this year where he took our dog out for a walk. This normally takes 20 mins as we live on the edge of an enclosed park. Three hours later, having had my wife and I scouring the area, he returned, having been picked up by a stranger a couple of miles away. We bought him a GPS tracking watch following this, which I posted about on here previously.

    The paranoia has developed faster than any other symptom recently. He’s on medication to suppress this, but it’s not fantastic. We have taken M and R in holiday with us for the last 5 years, mainly as cheap babysitting TBH. Ferrying then across Europe either by plane or with us in our velle. We’ve noticed the paranoia to be more prevalent at the end of these trips and we think this may be due to some sort of sensory overload (my son has SPD and we see similar behavioural degradation when his sensory pot is full.) we don’t use hotels any more as this can be a trigger for M and so prefer to stay in Villas or Chalets. This gives him some stability.

    Our last vacation to Lanzarote this half term was possibly a line drawer though. He got really confused by the layout of the building and why we were there. We presented this and printed out laminated signs / labels for each room. This sort of worked, bug I think we’ll have to go high contrast/ pictograms in future. We’re booked to go to Austria in February and current thinking is to leave him behind with his son and take one of his other grandchildren and R with us. Most importantly this will give R some respite from having to deal with this on a daily basis.

    At home Ive fitted new keyed alike locks to their house for simplicity and importantly fitted thumb turns to all outside doors. This means nobody can get locked inside and is mainly for R’s benefit should any paranoia situation deteriorate. We’ve also equipped the lounge and bedroom with dementia clocks (big bright digital things spelling out the day/time). There’s a whiteboard spelling out what’s going on each day and the planned location of R. If she goes out we Tag team supervise M. This now means sitting in the same part of the house as he’ll forget we’re there, get his coat and shoes on and head out looking for her. It’s tragic.

    Process automation and sequencing has gone, for example: when I take them home at night he’ll need to be directed to the car door. He’ll open it, get in and sit down and that’s it. Door will be left open and there’s no internal trigger as to what to do next. Years of learnt behaviour has vanished.

    We’re currently going through a process for a care plan. This has financial implications for both M and R as they seemingly can go through and utilise their joint savings. We’ve an appointment with an IFA to discuss this. Obviously we sought power of attorney as soon as we got the diagnosis. I also got their car finance cancelled as we’d made him surrender his license some time before diagnosis.

    My wife and R are holding it together publicly in that stupid British way very well. I’ve had both break down on me a couple of times. As it progresses the respite time from being a carer becoming ever more important. I think this now needs to be some sort of formal arrangement, either within the family or with third part aid.

    As always this place is full of great advice and being able to brain dump this small collection of thoughts is really cathartic.

    Key takeaway is to look after your mum. They bottle up loads of stuff and can appear to be fine when they’re barely coping both mentally and physically.

    Premier Icon tjagain
    Full Member

    Thats a great post hot Fiat and sounds like you are doing a great job

    Another thing to the OP – are you married? if so make sure your wife has space to vent / feels safe to tell you if she is feeling left out / that you are taking too much time with your mum and dad. resentment can build – openness allows it to be much less of an issue.

    Premier Icon athgray
    Free Member

    tj says what I was thinking. Power of attorney and using support services are great. Support services can introduce you to a wider network of people in the same situation.

    My mum has Huntingtons Disease. It’s really quite rare, and the HD Association have been good with her. Luckily my brother is living with her otherwise she would be in care.

    The last five years have been a roller coaster due to the genetic nature of the disease and repercussions on the wider family.

    I feel for your mum. Good luck though. Use whatever support network is available.

    Premier Icon tjagain
    Full Member

    One final thought – do not forget time for yourself as well. I realised my post was all full of what you can do for others. don’t forget yourself

    Premier Icon crazy-legs
    Full Member

    My grandmother had it very severely.

    Started with minor short-term memory stuff – forgetting that she’d asked for a cup of tea and being surprised when one was brought to her, moved onto struggling to speak and finished with her not recognising any of her family.

    It was hardest on my grandfather who had to live with her deteriorating and being that stubborn “make-do-and-mend” kind of generation he didn’t ask for help, it was left to my Mum to sort all that and actually insist that she was taken to the doctors and the hospital, that care was put in place and so on. It will be very hard on your Mum partly becasue she’ll be the “primary care-giver” for want of a better phrase and partly the distress of seeing her long-time partner gradually forget who she is. Sorry if that sounds blunt but I saw this with my grandfather. He tried to put a brave face on it but he became incredibly moody, stubborn, argumentative and withdrawn once my grandmother had been taken into residential care because of the stress and trauma (as @tjagain mentions above) and he was developing the same Alzheimer’s symptoms by then as well.

    Worth getting some sort of tracking device too (although try not to present it as that, just make it a gift of a new watch) or enable his phone to share location with yours. Short term memory goes first but they do often remember places or occasions from the distant past or ingrained habits and if they go missing it’s useful to know where those places are. Keeping them occupied and engaged helps a long way in preventing that sort of thing, even if it’s just looking through photo albums or doing hobbies.

    And encourage a very open discussion with you Mum about it, make sure all his decisions (especially financial ones) are cross-checked. If you can sort Power of Attourney now it’ll make life much easier later on.

    Best of luck with it and sympathies, it’s a horrible situation.

    Premier Icon smudgey
    Free Member

    I’m really sorry you are going through this and your poor Mum.What I’d do is find out as much as possible about the timescales for progression of the disease and look at residential care for him sooner rather than later. Don’t have your Mum getting totally run into the ground and getting to the point she cant go on any longer herself etc.
    A friend of our family got it and she got so ill that she was up and down all night, running out in the street, swearing at neighbours in her nightdress and turning the oven on full and leaving it etc. Her husband had to put her in a EMI residential care home in the end.
    Theres the Alzheimer’s Society and the carers Uk forum that should be able to help you with things as well.

    Premier Icon mooman
    Free Member

    There are too many horror stories about dementia – so best enjoy what time you got left with your father first; hopefully he will have a good few more years to enjoy.

    Understanding the disease is far more beneficial than hearing all the horror stories. Often the loved one is forgotten too soon and the focus is on the disease .. how horrible, scary and frustrating is that for the person living with it?
    Keeping busy and the mind active all helps – repetition retains functioning so dont deskill the person by doing everything for them.

    Premier Icon Mounty_73
    Free Member

    Sorry to that, its an awful disease. My nan was diagnosed with it and I became her main carer.

    Its different for everyone, but in my experience time is precious and I tried to spend as much time with my nan as possible….

    Premier Icon kenneththecurtain
    Free Member

    Cheers for all the replies folks, much appreciated.

    I only found out about the diagnosis yesterday so I’ll need to do a bit (or a lot) of reading up on some of your points.

    The whole family will be together around Christmas so it would be a good time to discuss things.

    Premier Icon cinnamon_girl
    Full Member

    Must say that 68 years of age seems far too young for this cruel disease.

    Some helpful posts especially those from tj and mooman, it will undoubtedly be tough and, imo, nothing really prepares you for watching a parent deteriorate. All you can do is your best.

    Premier Icon hot_fiat
    Full Member

    Its different for everyone, but in my experience time is precious and I tried to spend as much time with my nan as possible…

    ^^this^^ we witness deterioration in a series of plateaus, akin to a reverse of a child’s developmental leaps. So suddenly M will no longer be able to do some task that he could previously along with a load of related tasks. And there’s no warning as to when that ability goes. They just wake up one morning and it’s gone. As in the getting into a car example above: one day he just couldn’t, along with a whole load of other sequence tasks. Arse.

    The bit I dread is him forgetting my kids. I think that will be heartbreaking for all involved.

    Premier Icon MoreCashThanDash
    Full Member

    There’s some absolutely tremendous advice and experience in this thread.

    Premier Icon maccruiskeen
    Full Member

    I think its difficult to discuss dementia without using a language of negativity  – it is a process of loss, its almost mourning someone before they die – but its important to engage in the situation positively.

    Things I’ve learned are…

    Don’t stop anything too soon – just because memory issues make things difficult don’t be too tempted to step in and take over. Once someone stops doing something for themselves they can’t learn to do it again. So long as theres no danger its fine to get things wrong or get things muddled from time to time so long as people keep doing their thing.

    Get used to visiting care – start making use of home visits before you need them so that when a time comes when real help is needed both your mum and dad are used to people being in the house and helping.

    The time is now. In two senses – there won’t be a better time later to do something – don’t put anything off. But in another sense, as time goes on, more and more it’ll be ‘now’ is what matters – not looking forward, not looking back. Finding ways to enjoy the moment together and finding ways to cope emotionly when that moment is almost instantly forgotten (it can feel incredibly thankless and futile) are two real skills to learn. It doesn’t matter that the moment is forgotten – just keep making more moments.

    I think the most useful advice I found in regards to my mum’s dementia came from Wendy Mitchell’s book ‘Somebody I Used to Know’ – dementia is in lots of ways quite unfathomable because often the people effected by it are least able to articulate what it feels like (for my mum the information she always most readily forgot, even when in the early stages of her dementia was the fact she has dementia) but Wendy was able to write a book about her own condition and the light bulb moment for me was her description of the condition in terms of bookcases:

    She describes a wonky, shonky book case full of books – the ones at the top are your most recent memories the ones at the bottom are your earliest memories. Dementia is your bookcase of memories being knocked and shaken – the books at the top most readily fall off, the ones at the bottom are most likely to stay put. But thats just the bookcase of memories – theres a second bookcase of feelings and that bookcase is rock solid. So you may loose your memories of a place or an activity or a person but you less readily loose the sense of how those places and people make you feel. So something to have an eye on is the comfort of the familiar.

    Premier Icon doris5000
    Free Member

    I don’t have much useful to add, but I was reminded of this article, which offers a small chink of positivity, at a time when you might appreciate it:

    https://www.theguardian.com/lifeandstyle/2018/mar/25/meet-the-man-living-with-alzheimers-who-climbs-the-same-mountain-every-day

    Premier Icon kenneththecurtain
    Free Member

    Get used to visiting care – start making use of home visits before you need them so that when a time comes when real help is needed both your mum and dad are used to people being in the house and helping.

    That makes a lot of sense, plus I’d like to spend more time with him now anyway.
    I think my sister is struggling a bit with this at the moment – she lives down south so at the moment only visits a couple of times a year.

    He does a lot of activities that could be quite ‘risky’ once the disease starts making itself more known, so having one of us around to see how he copes in those situations seems a good idea anyway. He goes out in his boat sea fishing/launching creels, he goes shooting… Even driving, eventually, will become dodgy. A quick google suggests he needs to inform the DVLA of the diagnosis, though I don’t think he would lose his licence yet as he doesn’t seem impaired at all when driving. I assume that he will also lose his firearms certificate as they are (understandably) not keen on mental health issues.

    The more I think about it the more horrible it sounds like this is going to be for him. Poor guy 🙁

    Which leads me to cinnamon_girl’s post:

    Must say that 68 years of age seems far too young for this cruel disease.

    It does seem a bit rough. He seemed very matter of fact about it, saying that at his age there was a reasonable chance something was going to take him in the next decade or so anyway. There’s a big difference between this and a sudden death at 78 though 🙁

    She describes a wonky, shonky book case full of books – the ones at the top are your most recent memories the ones at the bottom are your earliest memories. Dementia is your bookcase of memories being knocked and shaken – the books at the top most readily fall off, the ones at the bottom are most likely to stay put. But thats just the bookcase of memories – theres a second bookcase of feelings and that bookcase is rock solid. So you may loose your memories of a place or an activity or a person but you less readily loose the sense of how those places and people make you feel. So something to have an eye on is the comfort of the familiar.

    That is a very nice analogy. Hopefully he will still get some enjoyment from getting outdoors, even when things get to the stage that he isn’t able to do all the outdoorsy things he loves to do.

    Premier Icon duckman
    Full Member

    My mum has it. It is an utter shite condition and don’t expect anything from the NHS. Sorry for the negativity, yesterday was then say I realised I would never have an adult conversation with her again.

    Premier Icon crazy-legs
    Full Member

    You mention that he has quite a lot of activities/hobbies. That is really positive – people who are active usually have a much slower progression of the disease.

    My grandmother was not active at all other than a bit of gardening. She rarely even walked the dog. My grandfather did all of that plus he played the piano and organ (very well) and all that activity both physical and mental kept him healthier far longer than my grandmother.

    Keep him occupied, engaged, doing things, using his mental faculties. It’ll help all of you a lot. Even if it’s a family board game after dinner (especially anything that requires a bit of thought or memory like Cluedo), it’ll really help. Those simple but familiar things become their anchor points later on.

    When my grandmother was in residential care, we went to visit her. She recognised my grandfather just by familiarity, didn’t know who me, my sister and my Mum were though. But when my grandfather sat down at the piano and bashed out a few Christmas carols, suddenly the whole place was lit up, they all had that familiarity link all of a sudden. After that the care home paid him a few £ a time to play on his visits.

    Premier Icon martinhutch
    Full Member

    My dad developed it early too. TBH for the majority of the time after that it was harder for the people around him than for him. He actually seemed pretty content, although that is not the case for all that many people with dementia. There will still be opportunities to bring happiness to his life, and for him to bring it to yours.

    I can only echo the advice to get Lasting Power of Attorney in place while he still has the capacity to consent to it, as it makes the process easier and cheaper.

    Best wishes

    By the way, maccruiskeen’s post is beyond excellent.

    Premier Icon maccruiskeen
    Full Member

    But when my grandfather sat down at the piano and bashed out a few Christmas carols, suddenly the whole place was lit up, they all had that familiarity link all of a sudden.

    Music can be an incredibly useful tool. Theres an organisation called Playlists for Life thats worth a look. I produced a film for them (more aimed at encouraging care organisations than us punters so its a bit instructional) but theres some valuable lessons for everyone in in it for anyone really.

    Heather who starts and finishes the film tells you everything you need to know about living with dementia as a family in a few sentences really

    Bill Drummond (out of off of the KLF) has a few interesting ideas about music that works for someone that are worth googling for – I remember he was interviewed on the topic on 6music a few years back:  “Start with the music that was in the top 10 on your 13th birthday”.

    Premier Icon globalti
    Free Member

    My Dad was diagnosed at 54 and died at 65 with Alzheimer’s. The person who suffered the worst was my Mum, without a doubt. I’m sorry to admit that I hardly saw anything of him or visited him in the respite ward where he eventually died. I was living far away and going through a self-centred phase of life.

    Premier Icon stevenmenmuir
    Free Member

    I need to have a proper read of this when I have time, my MIL forgets appointments, lives in a very chaotic way, cupboards overflowing because she has 6 of everything and won’t throw anything out but the most worrying thing is the paranoia. Convinced neighbours and previous owners of her house are watching/listening to her, last she phoned to say she could hear someone outside her house and she looked confused when we arrived to check it out.

    Premier Icon maccruiskeen
    Full Member

    A gp can do a basic memory test and refer on if need be. Although sometimes the test score doesn’t reflect real life behaviour so persist if you’re still concerned

    my mum could score very well over all (everyone drops points somewhere) but there were discrete elements of the test where she was getting zeros (didn’t know the day, date, season) which were the key yo how the condition was effecting here but she scored so well otherwise that this blind spot was being overlooked

    Premier Icon rOcKeTdOg
    Full Member

    It is an utter shite condition and don’t expect anything from the NHS

    Lost my mom to it and I agree with with you about how awful it is. She’ll have been gone 3 years this Christmas and it still makes me tear up now thinking about it.

    But it’s not the NHS fault, this isn’t the place for politics but it’s the government who fund or don’t fund it and I’ll leave it to your own conclusions about where the money making schemes will come from when social care is fully privatised with the excuse it’s relieving stress on the health service.

    Good luck OP the next few years are not going to be easy ☹️

    Premier Icon kenneththecurtain
    Free Member

    A gp can do a basic memory test and refer on if need be. Although sometimes the test score doesn’t reflect real life behaviour so persist if you’re still concerned

    my mum could score very well over all (everyone drops points somewhere) but there were discrete elements of the test where she was getting zeros (didn’t know the day, date, season) which were the key yo how the condition was effecting here but she scored so well otherwise that this blind spot was being overlooked

    This sounds familiar – apparently my dad passed the first test that he would have been given by a gp, but as he was seeing a specialist who knew the back story he get some extra testing, the results of which led to diagnosis. He didn’t give me the details but apparently there were specific areas he scored low on, but still had a high enough overall score to pass the first test.

    I need to have a proper read of this when I have time, my MIL forgets appointments, lives in a very chaotic way, cupboards overflowing because she has 6 of everything and won’t throw anything out but the most worrying thing is the paranoia. Convinced neighbours and previous owners of her house are watching/listening to her, last she phoned to say she could hear someone outside her house and she looked confused when we arrived to check it out.

    Two days ago this wouldn’t have raised any alarm bells, but after reading lots and lots about Alzheimer’s those symptoms do sound familiar 🙁 I hope for your MIL and your family’s sake that it’s not, but a gp visit might be sensible to check.

    Good luck OP the next few years are not going to be easy ☹️

    Thanks. Genuinely, thanks to everyone for posting. This place is really quite good when people aren’t arguing 🙂

    Premier Icon stevenmenmuir
    Free Member

    She has had the memory test at the GPs which she passed but we’ve ruled that out as inconclusive. We are now trying to sort out power of attorney before we do anything else, we had it when she lived in Dorset but it looks like we have to go through it again now she’s moved up to Scotland.

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