Early onset dementia- help for my in-laws
Quick backstory- father in law is 62. Retired in April 2021 after struggling with work (h&s manager) for a few years. Was a bit of a family joke about his obsessive behaviours* until things have gone downhill in the last 6 months.
*10 years ago he was anal about washing the cars every weekend, and would even wash ours if we timed a visit right!
Fast forward to today, and his social skills seem to have evaporated, he struggles to interact with their dog, delivery people etc. he has been to the “memory clinic” last autumn but his score was borderline so no action taken. Due to go again in a couple of weeks.
My mother in law is a fairly emotional type of person, not super rational, and is struggling to live with him day to day now. The situation is obviously upsetting for me, my wife and her sister+ fiancée (the 4 of us are pretty close).
Apart from assisting with practical things (power of attorney is in process), does anyone have experience of this type of thing, and how to access day centre care etc? He isn’t a danger to himself or others as far as we can see, nor has he been diagnosed as “ill”, but it’s not great for the whole family being on edge waiting for a call that something has gone wrong twice a day.
Sorry for the ramble, trying to act as the rational voice in the family at the moment and process how to best allow everyone to positively move forward.Posted 8 months agofossyFull Member
Social Workers possibly after the assessment – Speak to the GP. My FIL did a fantastic job of getting social workers to help with MIL and he soon had carers looking after getting her up, making food and putting her to bed.
You’ll need an assessment- so speak to the GP and let them know your concerns – would be worth your mum being there to say how it’s affecting her.Posted 8 months ago
Thanks- my feeling is that any assistance will hinge on the 2nd memory clinic assessment in a couple of weeks- arranged through GP so they are already aware.Posted 8 months agodoublezeroFree Member
I’m really sorry to hear this my father suffered with Alzheimer’s
I would go and visit all local care homes so you can find a good one, it’s worth having a good idea of the good ones just for respite care for your father to start with as it can be very tiring for carers.
Check age UK and Alzheimer’s society for events/day care clubs there is lots of useful information and they can help with applying for attendance allowance to help with care costs.
Your local council should provide support to but can be difficult without a confirmed diagnosis, I would ask his GP to give him a check up, and if necessary referred to social services.
I would recommend getting the book Contented Dementia it was really helpful in understanding what Dad was going through and how to manage some of the mood swings.
If all else fails go to A and E it can be the quickest way to get your Dad the care he needs.Posted 8 months agothepuristFull Member
Talk to the likes of the Alzheimers Society – they’re able to signpost you to support for everyone affected. My brother in law was diagnosed in 2018 and by now we were expecting him to need full time care but he’s had access to some new treatments and even though he’s clearly not the person he was (and tbh their marriage isn’t what it was as a result) he’s still planning a 60th birthday this month and a pearl wedding anniversary for October.Posted 8 months agocinnamon_girlFull Member
How’s his physical health? Have any blood tests been done? Prostrate? Waterworks? UTI? Are you able to accompany him (importantly would he mind) to the GP?Posted 8 months agotowzerFull Member
Sorry to hear that.
Based on experience. (*I was an only child so no family or trust/conflict type issues with me having access to everything), my dad went straight from lots of help from fantastic neighbours to a care home and it was in Scotland. Apologies if I phrased any advice below thoughtlessly.
Poa, both financial and medical, if possible at this stage.
Make sure there are wills, again if possible at this stage, (*leaving everything to someone who is very old, say a partner is not always the best solution imho)
Start chasing down All the paperwork, all ownership papers, house, …., pensions, accounts etc. Make sure you know what’s going on with everything. (I was lucky and ran the house remotely for about 2 year while dad got massive help from neighbours till he degraded too far)
Start monitoring everything pensions and account etc etc much easier with poa. Make sure you have key copies , stop the car being used if appropriate etc etc.
Understand how the house (car, dog, allotment , tbd, etc etc etc) is run (bills, so, Dd etc etc), monitor/be able to take over so you can run the show. (Ie if they are in his name that will need updated). E.g beware of auto renewal household ins/car ins etc etc etc, non required standing orders etc.
(*sorry) If esp bank accounts/other assets are not shared then on the sole owners death they get frozen (so can stop partners bills being paid) so shared worked for my parents.
I probably shouldn’t say this but I ended up impersonating my dad on a regular basis when dealing with utilities etc as it was so, so, so much easier. (I knew the bank details and was a joint) and had all the paperwork and ref nos, just used his name and dob on the phone etc etc.
Again sorry, but, start evaluating care homes, actually visit them, ime converted houses with carpets and narrow corridors are not so good for wheel chairs and zimmers and carpets for wee….., modern custom built was a lot better for my dad. you can find official care home reviews on the internet, note that not all care homes take Alzheimer’s people as you often require extra security as ‘wandering’ is surprisingly common. read the small print, I had to pay for curtains in one home and a room with big non opening windows facing the sun can too hot for people. Speak to local area care staff off the record/ask other residents and their visitors. You’ll need to fully understand the money – care costs, allowances, income, benefits etc etc and do a budget and be able to ‘argue’ with social services. Again sorry, ime stuff in care homes can disappears/break, the drawing of mum that I loved and really wanted got badly water stained and the in the family forever lighthouse in the bottle got broken, so be aware of that.Posted 8 months agojohn_lFull Member
Going through this with Mum at the moment and it’s exhausting. She’s had 3 memory tests in the last 8 months from 3 differemt GPs (she’s been staying between my brother and me, house flooded last summer,.partner died last month). Each one told her it was depression and prescribed different anti-depressents.
Living with her, we can clearly see what it’s a memory issue, her partner had dementia so we know what we’re seeing. Ended up with a private consultation last week, very thorough and very clear dementia diagnosis. She’s off the Prozac and brighter already, but it is still very challenging and it’s not going to get better.
I’m staying with her at the moment I’m her own home to try and assess what care she really needs and it’s a lot. Remembering to eat, take pills, wash, put the bins out, shower, laundry….all the mundane daily tasks you take for granted just don’t register. Or they do and then they’re forgotten.
Luckily we’re close enough to be there but she going to need almost daily care, couple of hours at time. Don’t underestimate how much strain it will put on you a d your family and take whatever steps you can to have assistance.
Good advice above too on finances, POA etc.
Typing that was quite cathartic. Good luck!Posted 8 months agomaccruiskeenFull Member
he has been to the “memory clinic” last autumn but his score was borderline so no action taken. Due to go again in a couple of weeks.
The score is only half the story – its quite useful to see where ‘points’ have been lost. My mum would score very well despite having clear issues to contend with. On one occasion I was sitting in with her where she got test – she picked up points in certain tests because she’s very visually acute and elements of the test that would challenge most people she just aces, (she’d probably ace them now even). But a whole swathe of questions she just couldn’t answer What day it was, whether it’s morning our afternoon, what season it was – could not answer at all. Her symptoms are focused very much around experience of time. But because thats only a few questions of the test although she failed them all completely they didn’t impact her overall score much.
If you know the ‘blind spots’ its much easier to address them and counter their effects on enjoyment and independence. Our situation was a little different as my mum was widowed and living alone – As a family we got into diary use – all had the same week-to-view diary, all had the same important info in them which we regularly syncronised and together we could manage over the phone what she was doing today. had done, needed to do and so on. Later I bought a clock with a 24hr movement (ie the face shows 1 – 24 and the hour hand only makes one revolution per day – took the minute hand off and made a new clock face that zoned the day into ‘Breakfast, Morning, Lunch, Afternoon, Dinner, Evening, Night’. Could only do all that because we’d had the nature of her perception revealed by seeing the test though.
If you’re north of the border, following diagnosis you get a year of post-diagnostic support – which is very helpful for signposting you to social work support, local services, and what everyone’s rights are (yours and the person with dementia) – attendance allowance and that sort of thing. I think if I had the time over again I’d have asked for that year of support to be postponed – with an early diagnosis someone’s still some time away from needing the services you’re being signposted to – I wish I’d banked the support for a few years and made use of it when things were more complicated. When we were organising more involving arrangements like ‘Self Directed Care Funding’ we were navigating that alone because the post diagnostic support was long spent.
Everyone’s experience will be different both in terms of clinical symptoms but also the dynamics of home, family and community. – But… Heres useful lessons I’ve learned:
First Rule of Dementia Club is: “The Time is Now’ – this has sort of become my person mantra and (for all intents and purposes that all the info that needs to be on my clock now). In the early stages – anything you want or need to do… do it now, not later. Holidays, fun , family anything – don’t put things of. Theres never a better time than now.
Second Rule of Dementia club is. “The Time is Now’ – the hardest thing for family and friends is the disappointment that the special effort you’ve made for someone gets forgotten. Its really quite galling – it feels like your efforts are getting thrown back in your face. But in a sense remembering something isn’t what maters- the time is now. Joy in the moment is joy – forgetting good things doesn’t mean it didn’t happen. Anything that is good in the moment its happening is a a success, it doesnt need to be remembered, you just need to keep remembering that The Moment is where its at.
Third Rule is. ‘Get people in’ – as things progress theres more need for help. What people find hard is having strangers in their house and in their space (as much or more so as a couple I’d imagine) so its useful to get used to having helpful people around – at the start had a great dog walker – came once a day, took the dog out, but hung around a bit – chatted, helped out a bit – thats all – but it was the start of a process of making people in your home and life familiar.. When I met folk from social work or the memory climic – at met them at my mums home – people came in – discussed stuff , got interested and involved in her space rather than theirs. We took up the opportunity of social work medication-check visits – someone popping by for 10 mins each day just to check you’ve taken your tablet – When we started having carers visit – it was before there were any particularly pressing care needs – they mostly about company and companionship – go for coffee, go and feed the ducks – thats important stuff. Later when needs were greater – having folk about, helping out, was normal.
Rule Four is. Stand up to this, dont give into it. This a challenge . You rise to all the other challenges in your life, rise to this one – the politcal discourse around dementia uses words like ‘crisis’ and ‘burden’. This is cowards talking. **** them. Its a duty to live this part of our lives (and by that to live as a family and community around someone with dementia) with as much commitment and as successfully as we seek to live any other part of our life. Do Dementia Well. Get clever about it, learn, be imaginative. Make the most of it, squeeze the best out of it.
Rule Five is. Don’t help too much too soon. And dont let people give up too much too easily. My mum put in a really good stint living independently with dementia for years – she lived independently 200 miles from her family for a couple of years, then moved closer so that we could involve ourselves more in her day to day life. We had to get more an more clever about how she continued to live independently but even with that closer support she was still living in her own home doing her own thing for another 4 years before her needs were sufficient to need residential care. She did her own shopping, made her own meals, got about by herself. Help. But help by helping to maintain independence – if someones finding something is difficult its better to find ways for them to keep doing it than to just do it for them – because if they stop doing something.. they’ll never start again. So eek out every ability while someone still has it. People will make mistakes (you’ll also make mistakes), but better for someone to getting on with life making mistakes than stop living their life. Help give someone the confidence to make mistakes and get by anyway.
Rule Six is. The world is ready – Out there – in the shops, cafes, on buses – people out, when it comes to dementia, are great. People in every encounter – are surprisingly helpful, patient, understanding and considerate – so although there are services and groups and resrouces out there support people with dementia and their families, theres also ‘everyone else’.
Rule seven is – feelings. This probably isn’t a important thing just now – but its import to to know what dementia effects and what it doesnt. Wendy Mitchell – as someone who herself suffers from Early Onset Dementia wrote a really interesting book about her experience of onset and diagnosis and writes about the distinction between ‘Memories’ and ‘Feelings’. She describes your memories as a cheap wonky bookshelf piled high with books of everything you remember: At the very top – your most recent memories, at the bottom, your earliest memories. Dementia is that bookcase being knocked and shaken and the books at the top (your most recent memories) get knocked off most easily and some get jumbled up with the ones below and over time more and more books get knocked off. But theres a second bookcase – much sturdier with all you feels about those memories – those are much less easily dislodged. You might forget people, names, places, situations – but you less readily forget how those people, places and situations feel. If someone or something makes you feel happy, secure, loved – those feelings don’t go away. People in the life of someone with dementia start to feel forgotten, start to feel that their shared history is forgotten but its important to keep reminding them that they are still felt.Posted 8 months agojiFree Member
@maccruiskeen – thanks for taking the time to post that – some really great stuff there.
One thing I’ll add is that not all dementia symptoms are dementia – my Dad actually had parkinsons, and despite popular portrayals, hos main symptoms were memory related. He’s now also got dementia, but the Parkinsons’s mediacation really helped with his memory/cognition for a while.Posted 8 months agokiloFull Member
As mentioned above get on top of all contracts, utilities, banking. Get passwords and set up online access. As soon as poa arrives get onto the banks, hsbc were slow, Nat west were quite good and nationwide just a pita. I would also recommend that you consider in case of emergency contact….. cards to be carried (my dad just collapsed a few times in the street a few years back with no id or phone on him). Father in law had vascular dementia and in the early stages he ended up lost so a phone tracker app may help. Get online shopping set up even if you don’t use it so it’s there.
All these little things just reduce the background stress because even the little things can all become a big black cloud over your heads as you try and sort them out when they become urgent.
Also make sure you and your wife look after your own mental health. My dad is now in a care home, dementia no other health issues and sliding slowly towards the end and it is all a great big bag of crap and stress so look after yourselves.Posted 8 months agojudetheobscureFree Member
I can’t really help other than to say I experienced the same tragedy with my father and your comments about his behaviour are spookily reminiscent and familiar. For the longest time we thought perhaps we were catastrophising (his behaviour) because the shift was so subtle. He also became OCD about things, fussing incessantly over whether I knew how to turn off the lights at night when I would visit and he would go to bed before me, or worrying as to whose keys and wallet these were when it was blindingly obvious they were mine.
After the OCD he started to develop a somewhat ‘cloying’ demeanour, being perhaps slightly over familiar and coddling with people so that they’d feel a little uncomfortable. At one point, quite a few years down the line, someone even made an accusation of innapropriate behaviour; that was extremely hurtful and difficult, especially as the person persisted with their suggestion even after his condition was explained to him. People can be really vile sometimes.
I feel for you and every fbire of my being goes out to your situation. Watching my father go through this was about the hardest things I’ve ever had to do. I managed that process somewhat by also photographing the whole thing, making it into a project. The joy that came out of that experience was that whenever I pointed the camera at him, he connected with me – the look that came back was my father.
He died in 2018 and I held his hand as he literally drew his last breath.Posted 8 months agorexatedFree Member
My suggestion is try to get the GP to re-refer to the memory clinic. ‘Dementia’ covers a range of disorders. You mention social skills, obsessionally, and early onset. A presentation of Fronto-temporal dementia vs Altzheimers vs others needs to be considered. A frontally-mediated dementia is more likely to lead to a ‘pass’ on the standard sorts of psychometric measures a memory clinic will use. Memory may not be a particular issue in the early stages. Try and push for a neuropsychology evaluation if one is available as this would be more in depth.
A memory clinic may be oriented to Altz but they will be very aware of FTD also.
FTD is a different kettle of fish to Altz….so I reckon it is better to know what you’re dealing with if you can find out. I am not saying it is more likely one than the other here, as this needs proper assessment, but just wanted to alert you to the fact that there are different types which lead to different behaviours as the disease progresses.
Some good advice on this thread. And sorry to hear some of the stories.Posted 8 months ago
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