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

My mum too. Over the last 4 years she has gone from a bright, intelligent, kind and gentle woman to someone who can be rude and aggressive, repeats herself over and over, has major problems with nouns and verbs in terms of recall, and is forgetting how to cook.

Worst thing is that her mother had vascular dementia, and she has always said that she would kill herself if she had it. As she is on insulin and morphine, it's a real risk

My poor dad (who is in very poor health) is really finding it hard.

My mum is being treated for Alzheimers and has been on drugs now for about 3 years. I managed to get my brother to the memory clinic to get a picture of what was going on as my father was in denial. Now, Social Services are involved and keep an eye on both my parents. My father is more like a toddler than an adult carer. My poor mum. Sadly sadly, there is nothing I can do.

Hello again ladies. Different time zones, so I missed the question regarding power of living will.
I think fil means power of attorney (over mil), and that both he and mil will get a power of living will. He said it seemed a bit complicated with several options, and he would know more once he spoke to his lawyer. She can still think clearly most days, she is still able to say what she wishes in regards to her life support towards the end, so good idea to do it now, so it is truely what she wants. I am not sure they know about the 7-14 year life expectancy, as I only learned last night when I googled it. A bit of denial I think, as I usually google any medical thing family members are going through.
I know she told me she would never burden herself upon family members, and we told her it would never be a burden if they wanted to stay with us.

Here is a link.
www.attorneygeneral.jus.gov.on.ca/english/family/pgt/livingwillqa.pdf

When we see them this week I will have a chance to ask him more, when dp is talking with him mother. Or dh can ask when I am with mil.

Power of attorney would be so fil can make decisions regarding her health care, if she refuses, I guess. I think he is making dp and I his power of attorney, we will find out more this week.

My mil, has been suffering with dementia for about 18 months. She is 82 and physically very fit. She wont admit anything is wrong and wont see a doctor. I emailed her Dr and told him what she was doing. She was seeing him for a repeat prescription for something trivial. He told her what I said and he said there was nothing wrong with her. She was not impressed.

She has become more and more confused. She finishes a meal and then starts cooking another because she doesn't remember eating it. All the food in her fridge was out of date, I bought her a clock with the days and year on as well as the time. Things improved for a while but now they are getting worse again.

My DH her Ds, wont aknowledge that there is a problem. I don't know how to help her she lives 30 miles away and I am sure she is going to be a danger to herself soon.

Lynli, my mil also re made their evening tea, although they had already had it. This was the thing that decided fil to try and convince her to go for a check-up. She forgot how to cook and fil does it all now.
Talk to her doctor again, don't give up. Even if your mother is angry with you, it is for her own good. I am sure she did things when you were a child for your own good right? Just remind yourself it is out of love and concern. Good luck.
Oh, and perhaps make sure she has up to date smoke detectors in the house, since she is alone, she may not think of it.

daffsntulips thanks for starting this thread. Through reading what everyone has to say I have realised that I have really been living with my head in the sand for too long and need to get myself sorted. I need to sit down with my dad and REALLY talk about how things really are..... difficult, because he has been in denial, too. And I need to step up to the mark and do far more to be a support for him as I know he is finding this all difficult.

I visited my parents yesterday and started the ball rolling with discussions with my dad, but I had DD3 + her boyfriend and DD4 with me, so it wasnt ideal. I will go back alone over the next couple of days and get things straight.

Consultant is doing a home visit on the 19th, so I think its an ideal time to talk to dad and find out what help he needs/ will accept and see what can be done.

reading all your cooking tales, I am very pleased that my dad has taken over those tasks, although mum will ask for something, ie chicken, eat it, moan about it, then in the next breath say "you never cook me my favourite, like chicken anymore"
My dad is the most impatient person you would ever meet, so he finds it all soo hard. I ahve suspected that he has been a bit horrible to mum in the past. Not because he doesnt love her still, but just because he cant cope, but he is also the most stubborn person I know and wont accept help!! Oh dear, I know I am going to ahve a battle on my hands, but I think I can be just as stubborn as he is, so will dig in!!!

PA - your dad sounds just like mine. He has never been particularly patient and gets very irritated by small things.

They arrived yesterday for a couple of days. Mum doesn't seem too bad. Just the usual stuff eg. her handbag was stuffed with dishcloths. "What day is it ?" asked every 5 mins. But thye only got here at about 7 so we will see what today brings.

In the meantime things with MIL have taken a downturn; let's just say "inappropriate social behaviour" . It looks like she will be in a care home within a couple of weeks, yet she had been doing so well. It is the nature of the disease,; things can change so quickly.

Sorry to hear about your MIL. Perhaps if she does go into a care home it will relieve you slightly of the worry of what she might be getting up to. At least the responsibility for day to day things are then not only yours and any "inapproriate social behaviour" SHOULD be sorted before it becomes too much!!

Good luck with your mum, too. It is very tiring, isnt it, when you have to answer ridiculous questions over and over. Hopefully you can give your dad a bit of a rest, though.

I know it sounds silly, but I also get really embarrassed for my mum because I know she would so hate to see what she is like. She was such a proud but shy lady who would never want to stand out in a group of people. I die a bit inside everytime she says something in front of others. Its not embarrassment for me, but for her. The person she was is nearly gone.

How long are your parents staying for? Hope it all goes well.

I have found the Alzheimers Society fantastic and very supportive. Help the Aged have lots of information about sorting out the financial side of things. There is an charity called Admiral Nursing who specialise in Dementia and are great for supporting the rest of the family. They are not quite national, but still have lots of good information. Some areas are much better than others for dementia. It's a real lottery out there.

Power of Attorney is ABSOLUTELY ESSENTIAL and can prevent a lot of grief if it is in place. It is awful to see people descend into such decrepitude and to hang on, waiting for moments of clarity.

Silent - if my mother will not agree to power of attorney through an ingrained belief that we are after her money what is the answer? I visited parents today and found out that poor dad has to have a colonoscopy in a couple of weeks time and I'm now getting really worried as she would never cope on her own. Any advice onpoa appreciated.

This thread couldn't be more timely for me. My Mum has been having memory problems for the last 2 years, which are progressively getting worse. She has recently moved 200 miles to be near me (in a flat 5 minutes walk away), but this has inevitably worsened the confusion.

At the moment I am trying to get as many services as possible into place and most importantly to get a proper diagnosis. We have got power of attorney on standby but that was hard, as she was reluctant like some of the others mentioned. However, it is very difficult to know when would be the right time to activate it as it is a massive thing to take away your parent's financial independence. At the moment, she is coping with support from me but she is prone to doing things on the spur of the moment and has been very vulnerable in the past.

I am visiting her twice a day as I am not working but not sure how long I can sustain this for (have 2 children and want to get back to work). At the moment we are living day to day and some are better than others but really it is like having a toddler who can't make any decisions for herself and is constantly anxious. I am getting very good at making shopping lists in my head and nodding as she repeats herself for the thousandth time!

Hugs to everyone going through this it can be overwhelming sometimes. X

aaaggghhhh

my patience has gone AWOL

Know that feeling tulip - any particular reason?

Hello
We visited the il's tonight, and mil was really well. Back to her old self, wasn't vague or any confusion at all! I think the medication is helping! Didn't have much time to speak to fil privately, so will phone instead and ask how things are and if he needs any help getting things sorted out at the bank/ Luckily she is ok with the legal business being taken care of. I am thankful his neighbor suggested it, in case mil does become argumentative or unreasonable down the road.

Leonora7, is he just going in as a day patient for the colonoscopy? Perhaps someone can drive him and someone else keep her company, and make the dinner for that evening for them?

daffsntulips , I'm sorry, sounds really rough for you and your family right now.

Hi

gtamom - glad your mil's medication seems to be working - I guess this is aricept usually used for Alzheimers. We were told it would not work for vascular dementia although I understand it is prescribed for this in the States. Dad is going in as day patient and I am going down the night before so I can take him in; it's a really early appointment and apparently the procedure takes 4 hours so I know he is going to be totally wiped out what with having been up all night owing to the laxative he has to take. My son will be staying with my mother - he's just rung me to confirm that she's agreed to this but she may not remember this when the time comes. I will stay on for at least another day to give him a chance to recover.

How are you now daffsntulips? Hope things have improved since yesterday!

Leonora We had Aricept prescribed for my Grandmother for Vascular Dementia, nothing else was working and I demanded [yes I am a brazen bitch proactive person] they try something else, but this was in IRL and prescribed by her GP after we lost all faith in her Geriatric Consultant. It did help a bit, she was less agitated but still forgetful.
Hope all goes well with your Dad

Daffs hope things have improved for you.

Leonora when is it your dad has to go in? Hope it all goes ok with them both.

Thanks Positive. Appt is on 24th Aug but I will obviously be seeing as much of parents as possible before then. Just now grateful that I am unemployed so have the time to be up and down the motorway.

Hi All

I don't have time just now for a full update so will keep it brief for now...

MIL is now in a care home for a week's holiday (she thinks). SIL moved her in yesterday and she just accepted it. we have been to see her this afternoon and she seems happy. We were very impressed with the CH; the staff all seemed happy and interested, the environment appaered tobe very pleasant but of course it is early days. MIL loves her food and this was all she commented on - the good and plentiful food. The only other thing she kept telling us was how beautiful we all looked!
We timed it well and left as they were serving tea.

Will pop in later. Hope you are all coping. x

Hi Daffs,

I am really pleased that the move into the care home went well. It must be reassuring that she has gone without being upset and causing more confusion. Is it close by, so that you can visit without it taking ages to get there?

Is your mum and dad still staying with you? Hope that's not being too stressful, too.

Hi,
Thanks PA.
MIL's care home is an hour away from us but only 5 mins from SIL. But an hour is a lot better than 2 and half hours; so much nearer really.
Apparently she had a fall in the night and has a black eye. Just glad that didn't happen when she was alone in her flat.

My mum and dad have gone home now; it wasn't really stressful but very sad and frustrating. I know the best way to deal with her is to go along with her but sometimes find it very difficult/impossible to do.
It is a desperate situation for my dad and as I have previously said he has never been particularly patient.

We struggle on as best we can.
x

Hi Daffs,

Just wanted to let you know that I am still around. Been a really manic week here for me, so feeling really guilty that I havent had time to get up to my parents.
We have 5 DCs and DD2 returned on Monday night from an 11 day trip, and her and DS went off 7am yesterday morning to a big camp/festival thing, so mountains of washing to be done for her. I know its feeble.... I also work 2 jobs.

Hope you have been able to relax since your parents have returned home? And I hope your MIL is still settled in the carehome.

Oh dear, now feeling really bad .... just called on parents. Dad had fallen in the garden and had taken half an hour to get back into the house, mum was blissfully unaware that anything untoward had happened.
Moped up blood and sorted dad out. He is a bit shaken, but nothing broken, so I ma sure he will be fine after a good nights sleep.

2 of my Dsis's are away together at the moment, so its just me around as the others live too far away. When they get back from their hols I think I need to contact them all and see if we can come up with a plan so that we all go in on different days and get something sorted. At the moment its all haphazard and sometimes they will see 3 of us on one day, then no-one for another 5 days. I am lucky there are a lot of us (5) to share the load as much as possible.