Dealing with dementia - anyone else?

[daffsntulips]

I could do with somewhere to chit-chat with people going through similar; a kind of group blog.. .

My situation-

My MIL has some sort of unlabeled dementia and is not taking any medication. She lives alone in sheltered accomodation. She has carers twice a day and meals-on-wheels daily. She lives 2.5 hours away from us.

My mum has dementia but I don't know what type . She takes Aricept. She lives with my dad again 2.5 hours away from us but in the opposite direction to MIL.

What is your situation?

Ta

Hello
My MIL has been taking something to help for a few months now, it begins with "A" and may be the same drug you mention.
We have not seen her since early July as we were away and only came home a few days ago, but will see her this coming week. FIL is coping pretty well. He had never cooked or done the finances in the past as mil did everything, but he is doing a great job.
I hope she doesn't get worse, so far there doesn't seem to be a change other than she is sleepier.

I just googled Aricept, and it is the same medication my mil is taking.
Her symptoms were basically forgetting things, and confusion.

My Dad is the same but he doesn't really cope very well - he is very down about mum and keeps hoping "it is a blockage" that the doctors will soon discover and give medication to resolve. But the reality is that I know she won't get better and is going to get a LOT worse!

hello to you both.

My lovely mum has alzheimers. We have been aware for about 6 years that things were not right, but she and dad managed to keep it hidden from anyone medical for the first 2 years. It then took me and my sister marching into the Dr with mum and explaining how things really were. Dr was lovely and referred immediately.

We all live close to each other, but I have felt so guilty as I have been carer for my 16 yr old daughter who has been very poorly for 2 years, and every minute was taken up with caring for her and I have not been able to be the daughter my mum and dad deserve. Dh is now unemployed and DD's health improving, so I plan to put this right!

Mum takes Razadyne.

Mum still has good spells, when she is the mum I know and love, but these are becoming less and less. She continually repeats herself and gets confused. Her personality has changed - she has become argumentative and sometimes even agressive (verbally, not physically) But this is just so NOT my mum. I am beginning to hope that she will die suddenly of something else because it is all too hard for everyone and it is making my dad into a grumpy old man, but you cant blame him!!

Mum had 5 DCs, I have 5 DCs she has 19 grandchildren in all. My DCs are concerned that she will stop recognising who they are. One GC arranged to visit a few weeks ago, she went at the appointed time and then 3 hours later my eldest arrived and was met with my mum saying she was late - mum did not even know that my DC was coming, so could not have been late! The whole visit was spent with my DC explaining which GC she was and it was all so heartbreaking as these 2 GC are the 2 that have moved away from home for uni and work and only see nanny when they are hoome.

Sorry, I'm rambling. I'm glad that you posted this thread. It would be great to have a bit of mutual handholding.

How far down this road are your mums?

Oh, I hope mil won't get worse. Is that a useless hope? She was such a strong woman, although the changes are subtle. It is so unlike her to forget anything. She seems like herself when we see her, with a few odd things, like people may do when tired. But she never seemed to get tired before, she ran the house and was very active with a large garden. I feel really bad for fil, he must feel depressed too, although he doesn't let on.
She didn't think she had a memory problem until they were in a car accident and she has no memory of it at all.

Hello.
I guess it has been about 2 years we noticed a slight change in her, fil noticed it sooner, but didn't mention it. Mil never goes to doctors and is never ill, and is a very dignified person. This is so strange to have her have anything wrong.

You never know with these things, really, do you? Could the accident have caused the memory loss? In which case, the damage presumably has more chance of staying the same and not progressing further,?

FIL has dementia and has recently taken to wandering off. He disappeared when out shopping with MIL and she had to call the police. He had no money and no mobile. Fortunately he was found several hours later, quite a few miles away, by a kind woman who brought him home.
The change in him is shocking, last time we saw him he had no idea who any of us were.
DH finds it really hard as we live several hundred miles away and he has lots of tearful conversations with his mum on the phone.
We are trying to convince her that he would be better in residential care but she is stubborn and acared as well.
He is elderly, frail and I am worried about him wandering off.
It is a very stressful time for all the familiy and I understand how all of you feel who are trying to cope with this in your families. It is very hard.

Hi. My 87 yr old mum has vascular dementia. She is cared for by my dad who's a year older. Unfortunately she will not accept she has any problem even though she endlessly asks the same questions every 3 minutes or so. She has no medication dad is finding it increasingly difficult to cope and their house is getting dirtier and more cluttered. I live 60 miles away and am currently unemployed so go up once a week to see them and try to help but mum's really resistant to me "taking over" in any way. It is now too late for my dad to get power of attorney making it difficult for Jim to force a move nearer to us (she wants to stay put) and I think the stress of moving would kill my dad anyway as he is very poorly with rheumatoid arthritis.. I am an only child but my son (22) lives at the other end of the town with my fil (another story) so pops in when he can. Does anyone have experience of forcing respite care as I can see my dad becoming increasingly I'll and frail with the stress but mum stubbornly refuses to go to even an hour for day centre chat? Sorry to ramble on but it is all so sad.

I don't think they necessarliy get worse as PA says it depeds what is causing the memory loss. But if it is dementia - everyone is different. I was once told "once you meet one person with dementia you have met one person with dementia". My DM is very different to my MIL.

How far down the road are they???

MIL is kind of managing independently with the support mentioned above. She can make herself drinks and deal with ready-meals in the microwave. She is physically very fit and is never in, but where she goes is anyone's guess. Although she does go to a day centre once a a week.She knows she has memory problems and gets confused but takes it all in her stride.

My DM denies that there is a problem and becomes verbally aggressive if we question her. She has very poor short-term memory; the behaviour you describe PA could be my mum. She will come here for the weekend, return home then ring the next day to complain that she hasn't seen us for months! She nags my dad to bring her here, arrives then begins to complain to my dad that she wants to go home. Her sentences are sometimes complete nonsense eg " Everyone was there. Trees, all green. Moving around. Kettle in and out. Videos shining" She then realises she doesn't sound right so ends with "Oh, I won't bore you with the detals"

Good to chat to peopel going through similar.

Leonora7 - are social services involved? It sounds like your dad needs a carers' assessment done. My DM and DF are coming tomorrow for a few days and I am going to suggest DF has one done. He already gets carers allowance but the assessment is more about support than money. ( I think)

Thereis so much to learn about dementia, hopefully we can help each other out.

No, social services haven't been involved. Mum goes to a memory clinic ( think that's what it is) about once a year but they didn't seem to be very helpful until I accompanied my parents last year when a) a diagnosis was actually given b) day centre was suggested (and instantly refused by intransigent mum!) and the social worker told us they would probably qualify for caters allowance. Age concern were great and helped them fill in the forms and they both now receive this; however, mum steadfastly denies that she has any payment despite being shown her bank statements time and time again so will not pay for a gardener or cleaner. Meanwhile dad pays for everything except for a bit of food so is resistant to adding further drains on his finances. Mum has another appt next month so I will ask about social services. Thanks for the advice. Should add that dad is very deaf and mum has bad macular degeneration so communication is additionally hampered! Sometimes you just have to laugh.

Sorry - meant qualify for attendance allowance.

Have you looked into PoA...why is it too late? Would your mum allow you to be the PoA rather than your dad? It isn't just about finanaces but health decisions too.

SIL gets carers allownace for MIL, it helps pay for the carers who go twice a day. MIL thinks that the NHS provide this free of charge!

Daffsntulips - mum would never agree to poa anyway. She is very protective of her finances and verbally aggressive when there is even a whiff of criticism (as she sees helpful suggestions). Her favourite response to any question she doesn't like is stonewalling. You cannot really have a sensible conversation. My understanding of poa is that she needs to be compos mantis - would her extremely poor short-term memory not be a red flag to any solicitor?

Maybe you could ask CAB about this. I don't really know the answer, sorry.

Sorry - compos mentis. Blasted auto text lol! Will discuss all this with social worker at memory clinic.

No, although it is logical to suppose a head injury may have caused the memory loss of the incident,and we both asked fil about that too. She didn't have any injury done to her brain, just her back, and her face was bruised/scraped. She just looses memory of things completely. She told me she remembers standing putting her box of sweets she had just bought into the car, then next thing she remembered was being at the hospital. She even discussed how strange it is to have no memory of it, yet knows she was in the accident, because everyone told her and the injuries and treatments for it. The house is spotless as when she was totally herself, although her garden is not quite the way she usually has it. (still 10 X nicer than mine ever was).
Guess when we see them next week we will see if she is still doing well.
Reading your situations is sad but helps at the same time. I feel reassured mil is not at a later stage, then feel afraid of that happening. It is hard to see parents decline.

Leonora, your situation sounds really difficult for your father. I hope you can get them moved into a place with caregivers. I think fil has some sort of plan, as he told me he was getting power of living will a few month ago on advice of a neighbor who lot a spouse to Alzheimer's disease last year.
I just googled Alzheimer's disease, and read the life expectancy is 7 years, but could be 14 years.

Gtamom, what is power of living will? Hope your mum is well next week. Isn't it common for there to be loss of memory after an accident?

Thanks for starting this thread - someone else started one a few weeks ago suggesting we should have a specific section here for issues relating to elderly relatives but don't think anything has happened yet...

I have a relative with dementia - not sure what type yet, she has had an MRI scan, no idea what the results mean so will have to wait for her next hospital appointment. She has no dh/dp or children so it is very difficult - there is a warden at her block of flats but other than that no-one to keep an eye on her. I am too far away to be able to help other than on an ad-hoc basis.

Social services reckon she is not bad enough to need help yet...

As I was hanging out the washing yesterday it struck me how much she has deteriorated in the last few years. I was hanging up a cool t-shirt which she gave to ds1 3-4 years ago (ds2 wears it now). They both really loved it. This year she sent ds1 a girls birthday card and couldn't spell his name...

Riven - my mum wouldn't go to the GPs and my dad wouldn't make her.

I ended up ringing her GP who wouldn't talk to me because of patient confidentiality but said the practice nurse would talk to me. I voiced all my concerns to her, told her about mum and dad's reluctance to go to GP and she said she would see what she could do but wasn't able to say what.

Within the week my mum had been called for a 'Health Check' and was told it was jsut routine; I hadn't told my dad about the phone call as he wouldn't have been happy. At the 'health check' mum was asked 30 memeory related questions and because of her results she was referred to a CPN, she wsn't told it was a CPN. The 'nurse' goes to the house every 6 months and mum thinks everyone over 70 has this! This has resulted in further referrals, tests etc. She still thinks these are all rouine tests given to people of a 'certain age'.

Do you know who your mum's GP is? Maybe a call fro you would work. Good luck.

Yes I did something similar to daffs - phoned my relative's GP (who hadn't noticed anything amiss up to then - relative is very good at bluffing). She also got my relative to come in, did blood tests to rule out another cause for her memory loss & I assume did memory tests too. She was then referred to a neurologist at the local hospital.

Riven - I have, on a few occasions, phoned my parents GP. I always start the conversation with explaining who i am, then saying. "I know you cant tell me anything or discuss anything because of confidentiality, but can I tell YOU something and leave it with you" GP has always been brilliant and thye now have on DMs notes that they can discuss issues with me.
There may be my dad and 4 other siblings, but it all seems to come down to me doing the phoning as I was a nurse, so they seem to think i know everything - I certainly Dont!!! But i will stand up to DRs for my mum and put my foot down to get things sorted. (Plenty of practice with this)

We are lucky that my brother is a solicitor, so he is dealing with all the legal side of things and dont need to think about that.

Mum went away for a family wedding a few weeks ago, stayed in a hotel and went missing overnight. My dad was beside himself. She turned up a few hours later with the help of the police, but I think this has panicked him and now he wont let her out of his sight and double bolts doors and things at night. God knows what would happen if there was a fire, or they both needed help and were locked in their house.

I think you have to just take one day at a time, one problem at a time and not think about how much worse it could get. Its too depressing. My mum would never have wanted to end up like this and the sad thing is it could go on for years! I dont want to remember her like this, its just not her anymore.