Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

The first visit whilst on Meds was pretty quick. We saw one of the nurses and it was just basically how are you feeling, have you noticed any difference, had I noticed a difference and check heart rate. No questionnaire, she said that would be at the end of the 3 months but Mum came off Aricept after a couple of months and we're back to the beginning with Galatamine.

wynken...interesting ....Our 1st appointment is actually clashing with something the kids are doing at school.

I phoned and begged asked if we could be slotted in a bit earlier ...thinking it was a 10 min appointment ...but we can't as it a 45 min appointment .

I am going to miss the summer fair

Oh no Bizzey. I hate I when things clash with the DC I guess different places have different protocols.

Hi Topknot. Sorry that you are in a position to join us, but its great to be able to chat to others that know the score - my friends are sympathetic, but really don't want to talk about it.

My poor dad. Mum has spent the day thinking he is her father . He just doesn't have the energy for all this. Was just talking to him about care homes and that I'd like him to move up here when it comes to it

Hi topknob. Your mother would be young to develop Alzheimers but it happens.

The good news is that there is now a drug Aricept which can slow the memory deterioration, at least for a while. Not all are eligible or can tolerate, but it apparently really works for some.
The memory people were also pretty sure pre-scan that my mother would have Alzheimers. There are other types of dementia like vascular, which seems linked with high blood pressure and mini strokes. Or even a tumour. So my mum had a scan anyway to confirm. The doctor was right. The important thing, if she is eligible, is to get your mum trying Aricept quickly to preserve as much memory as possible.

Where my mother is they do the scan then there is an appointment with a specialist who prescribes, starting with a low dose. Then a check up after 4 weeks when the doseage may be increased (we have this on Tuesday) and then more follow up for six months, assuming things go smoothly, and then discharge to the GP.
Worth ensuring someone is with her for diagnosis. Not least as it is a chance to ask about likely progression. For some people it can be quite fast.
Once you have a formal diagnosis you should talk to your mum about Power of Attorney. If in the first instance it is your dad she should consider an alternate of a younger generation. POA (both care and financial are only used when she loses capacity to do things herself but need to be set up whilst she has capacity. )
Even if she is relatively well it is worth contacting social services and asking for an assessment. This provides a means to tap into support, eg if she needs adaptations or someone to come in each day to give medication. It also provides a flag if she were admitted to hospital.

Thats the practical bit. I cant offer much advice on the emotional side. It is a horrid disease, not just for your mum but everyone around her. I am really sorry to hear your news.

Thank you my parents are divorced so it all comes down to me. I always take her to any appointments and if allowed go in with her. POA is something I have been thinking about. Her bank suggested I became a third party on her bank account as they were concerned about her, so I have done this. So far all other agencies etc have been happy to talk to me once I explain, which is good.
Thank you again for the welcome. Sorry for all of you as well but so good to have some advice.

Topknob my parents are divorced too. That's good that you're being a third party on the account but I would organise POA when you have a diagnosis. The Memory Clinic talked to us about it. Mum had difficulties understanding the difference between an Executor in her will and the power of attorney but got there in the end. It is best to have it as potentially there could be cases where you really need it and if you don't you would have to apply to the Court of Protection for Guardianship which is a whole other can of worms apparently.

The Alzheimers Society referred us to a charity who helped us apply for the POA for much less than using a solicitor. We only did the Financial one as it seemed the most important at the time but now Mum's more lucid and the pressure is off a bit I'm thinking about broaching the subject of the Health and Welfare one as well.

Another financial thing is Attendance Allowance, your Mum might be eligible for that if she doesn't already have that. Plus if there is a formal diagnosis, if she gets AA then a lot of councils will exempt her from paying council tax.

Afternoon all & welcome topknob (although we all know you'd rather be anywhere but here.)

Needs, I wondered about the whole when is your parent not your parent anymore thing. Bought the last issue of New Scientist which had a couple of articles about what is "consciousness" and it was interesting. I don't think there is much of my "Dad" left. Very occasionally you catch a glimpse in a word or look but I sometimes think that is wishful thinking on my behalf.

For all of you with a parent with Alzheimers, check out this link from Dr Briffa about B vits slowing down or even staving off Alzheimers: www.drbriffa.com/2013/05/23/b-vitamin-therapy-looks-promising-for-staving-off-alzheimers-diseaselow-carb-diets-can-help-maintain-the-metabolism-after-weight-loss/. Seems well researched & not quackery. Could be worth a try.

Dad has been under the care of the stroke team more recently, but this has diminished in the last few weeks to bugger all basically & I wondered what help if any we could expect from the dementia / azheimers side of things? Any thoughts?

My dad died from Alzheimer's Dementia last November
I didn't think you actually died from the Alzheimer's I thought it was usually another illness but that the Alzheimer's prevented the person fighting it effectively. But it was actually Alzheimers on his death certificate
The last coupe of years were awful and last summer dad began to lose his balance and then broke his hip and once he lost his mobility he went downhill fast.
He didn't recognise anyone for the last 18 months at least, but would say hello sometimes. His sister visited him several times on the last few months, which was hard for her as she lives a long way away, she was very upset to see him as he was.
My dad was never an easy person. Very judgmental and critical, the illness made him worse and he was very vocal. Sadly I believe I was always a disappointment to him because I wasn't a boy, but I would like to think I made him proud at the end for fighting to achieve his last wish.
I am so sorry for all of you going through this, it is a horrible illness. I thought I'd be relieved at the end but I really miss him, as he was before it took over.

You'veCat - so sorry to hear about your Dad. What was his last wish that you helped achieve?

Thank you PostBellum
He wanted to donate his body to medical science as he was a scientist. He had always told us this from when we were quite young!
However his body couldn't be accepted once he developed Alzheimers but by then he didn't understand. So I arranged for Brain donation instead. Then he died on a Saturday and there was no doctor to sign the death certificate as it had to be one who'd seen him in the last 2 weeks and it looked like by the time the doctor came back from holiday it would be too late for donation.
After a lot of tears and heartache we managed to get it signed the next day and the fabulous funeral directors managed to get him to the hospital for the donation within minutes of the deadline for when he would no longer have been viable.
It was a bit of a nightmare really but it meant more to me than anything else that some part of him was donated, as I know that's what he had always wanted.

I think he would have been very proud YouveCat.

Hi can I join you, my mum was diagnosed with Lewy body dementia last year, she is 80 and living at home with my 90 year old dad. It's a cruel disease made worse as my mum also lost her sight a few years ago. She is agitated and often very frightened- awful to see. She has a lot of hallucinations which are often scary. My dad can longer cope and we have contacted ss to do an assessment- dread the red tape and battles we will have to get event care and ensure my dad gets to stay in their home. I can't believe after 50 years thy will be split up, and my mum would hate the thought of being away from her own home. Guilt ridden

Oh welwyn I am new here and do not have any advice....but I am choked for you ....stay with us here and we will hold your hand x

Oh welwyn, my ma has macular degeneration, awful short-term memory, hallucinations, and is terrified.

It's awful.

Thx wentworth, yes mum has macular degeneration as well, so cruel to have both this and the Lewy bodies dementia . I find it s o hard to reason and try to make life better for her. All the sight advice rays on a sound mind, and the dementia advice often relies on visual stimulants. Very hard to know what to do for the best

oh welwyn, so sorry to hear about your Mum. Huge hugs. Don't have any advice really - only to come here when you need to download or get some virtual hand holding.

Youvecat, that was a really good thing to have done. I bet he would be really proud. I miss the way Mum used to be. She's had a really good few days and i know on some level my mind slips back to thinking there's nothing wrong even though rationally I know she's been ill for years.

Welwyn that must be very tough and MrsF too. Wesleyan could you seek to the Alzheimer's society before the assessment so you know exactly what SS can offer in your parents situation? I don't think there will be an issue about your Dad stagy in his home but it is good to be armed with precise facts before. I always sit there with a notebook so I can take notes and read back later when I've had time to think about it.

I managed to log onto my Mum's account last night which is progress. I think the bank have sent my card to her address but it does sound like she is willing to hand it over which is good. How many of you have the Health and Welfare POA ? We only did the financial one but now I think we should discuss the other.

Another rubbish day. Mum had one of her non responsive turns again today (have been going on for a couple of years), and dad just phoned to tell me, and confessed that he'd sat there and wondered if it would be best just to leave her be and see if she slipped away . But he did phone the gp who told him to phone 999, who did come and spent an hour there, but felt she could stay at home as was more rousable with time. GP is reducing her morphine patches. But I'm not sure really - this has happened over and over again.
dad is at the end of his tether tbh.

More cheerily I did something naughty yesterday. My brother hadn't phoned them for over 3 weeks - I speak to dad daily. So I posted on FB about mum forgetting dad and how crap it was. And amazingly, though he didn't comment or anything, he did phone dad last night.

Welcome Welwyn, sorry you find yourself here.

Youvecat, I'm sure your dad would have been very proud of your tenacity in making the spirit of his wishes happen.

I'm so sorry CMOT . That must be incredibly tough to hear your Dad say that but so much better for him that he can actually say that to you. They aren't mini strokes are they? As for your brother I'd have no qualms about posting that on FB.

The awful, awful, truth is that I agree with him. I really don't think they can cope together much longer.

I've wondered if they are TIAs, but she isn't affected in any other way during these episodes, and a CT scan done during one didn't show anything apart from severe atrophy of her temporal lobes. When she has been admitted during one they just decide on a reason (opiate overload, gastroenteritis, don't know..) for that time, and nothing more happens. But I think she takes a permanent downturn in her dementia after each one, so maybe its another chunk of brain dying off.

CMOT......but at least your dad can talk to you like wyken said.

Dad has got/was due an appointment at the hospital tomorrow for something else that needs checking/is wrong with him but I decieded neither dad or I was up to it (CMOT I know I said I would do it (on other thread) ..but just cant!)

We were dure to go 3 weeks ago but my car decieded to blow out white smoke so I had to cancel it 1 hour before the appointment . Man on phone gave me tom .

Phoned to cancel ...we are not in the system as 1st man did not log it properly and we went dowm as a DNA ref back to GP !!!

I explained it was not a GP referal in the 1st place but a follow up from the hospital after he had been taken in via 999.

Got it sorted ..they change the DNA and we go the morning of the day we have our 1st follow up appointment in the Neurology clinic....think picnic and a flask is going to be in order !!!

Mum is getting excited when he has a good day ...."oh he is better now !"

Cruel I know but I can't explain too much to her yet...I want to wait for our other appointment when I can ask some questions and get things clearer in MY head first .

As an aside ...are there any questions you asked that were good or any questions you wished you had asked ??

to you all

Oh CMOT that sounds so tough for you and your Dad. What are the morphine patches for?

The morphine is for her pain caused by her spine collapsing and compressing the nerves.

Have a nice day out Bizzey . At least it just makes one day of schlepping to hospital. Mum gets terribly constipated, but is very resistant to taking the medicine to sort it as she then has accidents.

Bloody hell CMOT that sounds bad - your poor Mum.