Are you Caring for a Partner & Parents with Dementia/Alzheimers

Great idea @arpie.  A private group would be good as we do have specific issues and not always anyone around for support.  We are still 3 years into the stupid 'diagnosis' phase for my now 71 year old hubby. 

Mother in law had Alzheimer's and 80 year old brother in law has some kind of dementia - he is in a nursing home as he no longer remembers how to walk or talk.  He was never given a specific diagnosis (there are over 100 dementias) as he had a brain injury when young anyway.

Our biggest issue so far is the 'shadowing' and no initiative or decision-making capabilities.  As his memory is not too bad and he has done the tests so often he knows them and gets them right - ha ha.  He is useless with handling money or doing any measuring, lacks emotion, oh the mimicking (usually me, but that is how he gets by), no body temperature recognition, fixations, lack of cognition, sense of smell.  I am lucky in that he mimics me by following me into the shower so he is clean !

I have found the supports out there are so text-book but there are no practical helps.

Certainly sounds like it would beneficial to have a private group - can't imagine the angst of watching a loved one deteriorate slowly

Yes, it is the heartache of watching a person's personality fade (or change entirely) as well as one's carefully planned future disappear.  My retirement plan of the big overseas trip to see places of my Grandparents' early lives in the UK has now faded.  People say "put him in respite" but is that fair to him ?  Also, knowing I was away doing that without him would not feel right - and not as much fun. 

Dementia is thought of as an old person's disease but B-I-L was diagnosed at 62 and hubby displayed symptoms well before he was 70.  They are by far not the youngest, some people can be as young as 30.  Imagine having small children and a husband with dementia ?

A friend has adult off-spring who come up from Melbourne to spend the day with Dad which allows Mum some time away from the home and the worries, time to rejuvenate a bit.  For those of us who were not able to have children it can be a very lonely life.  Friends cannot understand, are embarrassed (it could be them) and stay away (remind us of friends along the BC pathway ?).

Having support and getting some tips from others on how to cope with the day to day issues would be fantastic.

Absolutely - it has stuffed up our plans too - specially now with the incontinence issue - wouldn't like that to happen in our campervan ..... I've bought waterproof fitted sheets for the house, the camper & a spare set to take with us when we visit others (like this weekend away) with lots of towels and a yoga mat to put under the towel to make absolutely sure nothing will leak thru to the sheets & mattress ..... and that is whilst wearing pads/pull-ups that are supposed to be leak proof!  NOT!

I can't even imagine how I got him to Mexico & back 4 years ago (with his twin brother) to compete in the Triathlon World Champs!  He'd already been diagnosed as 'early stage' about 5 years before.  No way could they travel on their own ....  tho I know his brother still likes to think he will ......

It is more than just being 'forgetful' - it is picking up on 'questionable decision making' which, in hindsight, started a good 10 years+ ago .....  picking up on repetitive comments, the same story being told time & time again - all these things can indicate early onset dementia. 

There IS some medication that may regress the speed of development but sadly, hubby has a heart murmur & is unable to take it.  

The '20 questions' (usually the same question) gets a bit tedious even now, but they are not doing it on purpose.  Every day, he asks "Are we still in lockdown?"  So now I just say 'yes' - it is easier.

We've just been away for the weekend with 5 other couples (really good triathlon buddies who he trained up to Ironman) & I think they were really surprised at the deterioration even since our last group outing together in May.  All week, he couldn't remember where we were going, with whom - but luckily recognised most when we got there. But he was terribly 'restless' all weekend as he was out of his normal routine and this showed itself in his incontinence issues. 

He is also getting very frail & whereas ten years ago, he used to compete in Ironman and Half Ironman, now he often stumbles when just walking down the street or even in the house.  He over balances when getting up from a seated position .....   He tripped on the weekend whilst walking to town for dinner - luckily I was holding his arm, so prevented him going down face first, tho he still ended up on the pavement, I was able to slow it & my buddies tried to grab him as well to break the fall - no injury, thank goodness.  

He can't use his iPad or mobile phone any more - he just can't remember what to do!  I have a heap of notes written all over the house, to remind him of things ..... his brother's phone number (and mine,) Drs appointments etc 

He is no longer driving or riding his bike on the road - it was just too dangerous to others.  So I have to plan my day to drop him at the swimming pool, do a 1hr shop & pick him up ..... 

My girlfriend's dad was diagnosed in his 50s.  He went from being a highly organised sheep/wheat farmer - to being tied in a 'child harness' when his wife had to take him shopping with her as she couldn't leave him alone on the farm.  It was just horrible to watch the slow decline & can only imagine how hard it was for his wife.

Agreed @June1952 - it is a bit like BC - until you've been thru it yourself, you really have no idea.   

I only learned about the incontinence nurse tip yesterday - so if anyone has ANY tips about ANYTHING from looking after a friend or family member - please whack 'em here.  

Being thankful for small mercies - I am just so lucky that he isn't aggressive or 'suggestive'.  Many lose all sense of propriety/inhibition & are known to make inappropriate comments & suggestions to members of the opposite sex (or same sex if so inclined) .... or they wander off and you have to call the police to find them!  :(  

At this point in time, I can still duck out for a few hours of 'me time' so I can go fishing or to Ukulele - but I don't know how much longer for!  Every day could be my last day .... 

Mine is not so bad after all !
He does chat up ladies in any queues he happens to be in - to the extent that I phone him and when he gets his phone out I put mine away all innocent - by then it has broken his concentration.  I let him go and pay at the pub for example but ... !  If there is something wrong, like they are out of the chosen meal, he cannot work that out at all.
He is no longer driving but is steady on his feet so I am again lucky there.
He does open his phone but unless it is me he does not know what to do and gets angry.  He does not make calls at all.
He was aggressive earlier in the year but now I see the signs and know when to depart.  By the time I return he has forgotten.
Like you, there are 'reminder' notes all over the house - they work sometimes.
The specialist said that as he does not have Alzheimers he cannot be given the medication and it sometimes does not work anyway.  His story ?  He will not take their medication ... that is not what was said.  Just as well I was there. The specialist like their paper tests to do the diagnosis, they take no notice of the person who is the carer so lives with the problems daily.
All in a days work ......
I try and see the funny side of things .....

Ladies, these stories hurt my heart. You have so much to deal with from day to day as well as the grief involved in losing the one you love in increments. Xx

Wow @arpie, that sounds very hard 😕. On top of the whole bc. Geez, it’s like you can’t catch a break. My great uncle had dementia. It’s terrible seeing it happen like that. I feel for you all. And I really hope you get your private group cos sounds like could be very helpful 🤞

@arpie, your story saddens me as it seems your partner's condition is more advanced than that of my friend's partner - and I see regularly what she is going through.  My hubby passed away suddenly but now I am so glad that I did not have to see him suffer and disappear like that.   @June1952, I am in awe as to how you cope on a daily basis.  As the years go by and scanxiety rears its head once again my thoughts drift to what would happen if the worst happened.  Could your men cope with you once again being diagnosed and missing as the doctors worked more magic ?  Life is cruel.  I think of you both and have you in my prayers.  Anne

Dear @arpie and @June1952,
I'm not very good with words on such important issues, so I'll just say

Love and best wishes from jennyss in Western NSW

Many Thanks for your understanding & support, ladies .... a problem shared is a problem halved! 

It is almost one of the 'taboo' areas - like mental/depression issues used to be ..... but it should be out in the open, cos chances are, your partner/parent could be next! It slowly comes on .... so it pays to know what to 'look for'!  The earlier it is picked up, the better it can be treated.

A small win today!  No leaks overnight!  YAY!  The washing machine gets a rest!

There ARE funny moments too tho - like when hubby tried to use the Remote Control to make a phone call ..... Then he suddenly decided he didn't need showers anymore early in Lockdown (as he wasn't doing anything!  I guess that is logical?) ...... and would go for a week without a shower!  Luckily, he's never had body odour, so that is a real bonus!  He is back showering every day now tho with the incontinence issue!

It doesn't matter WHAT we see on TV - he says ''Seen this - It was on last night."  (Even the news!  LOL)

We installed a new clothesline some years ago - the 'umbrella one' that you can remove if you want to free up space ...... well it is permanent now - he 'adjusted it' so it fitted into the hole left from the cut down Hills Hoist - and forced it into the pipe (after cutting a bit off the bottom of the new one) and the end result - I have to stand on a plastic box with a wooden insert so that I can reach the clothesline to hang stuff - as it won't come down 'low enough' for me!  :(  grrrr. And I am not 'that' short ..... 5ft 3"

He bought an 'outside shed' and erected it on our rear deck (off our lounge, one level up) and slowly migrated ALL OUR TOOLS from the garage into the shed!  So now, when I need a tool in the garage, I have to go upstairs & grab it, then go downstairs to use it!  It all made perfect sense to him ........ NOT!

Oh dear - the tales I could tell ......