Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

[CMOTDibbler]

Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.

Thats really good advice. Thank you. I suppose if it brings her peace and hope its not a bad thing

exactly. I found it hard at first but it is kinder for mum.

I think not arguing is the best way too. So I wouldn't say 'yes, nana, I'm your daughter' but 'we do have a special bond don't we'. Mums much happier that way for sure.

I hope everyone is doing OK (or as well as can be expected). My mum's MRI has shown no structural problems, some minor age related changes to blood vessels, but nothing abnormal.

The next step is to involve a nurse to "carry on the assessment" and "be someone for her to open up to". I'm really frustrated by all of this. Great of course that there's apparently nothing wrong, but I am astonished that someone can be so terribly unwell and completely dependent, so suddenly, with no cause. (apart from the idea of anxiety).

Needless to say she doesn't believe me, thinks she has a tumour, won't accept the anxiety argument (I don't blame her!), thinks I am kidding her about the scan results and that I'm hiding the diagnosis from her. She wants to know if she's going to get better.

I see a very long road ahead.

Hi luvvies, that does sound strange for such a dramatic change to have no obvious cause. Anxiety just doesn't seem to fit, of course I'm no doctor! Has any medication been prescribed or are they waiting for the nurses' assessment.

The consultant has prescribed anti anxiety medication. A tiny dose. She took one tablet and didn't feel well, but has since had the same symptoms on another day. So I think I have convinced her it probably wasn't the medication. I'm going to get her to take it again on a day when I can be around to supervise.

Oh dear Luvvies, this must be hard to deal with and I can well imagine your frustration. How is she doing now ?

Just to give you all a bit of a laugh, we're supposed to be exchanging tomorrow on the house. Taken a few days off work to do the final sorting etc. Slight problem, one of Attorneys has forgotten to sign one of the forms he finally returned. Clue - it's not me .... It's a pain but apparently we'll be exchanging and completing in one go next week.

Mum's still pissed off and hard to talk to so am trying to keep my distance.

oh what! makes you want to scream doesn't it wynken! hope its done next week.
i'm still waiting for exchange the buyers solicitor is faffing about with queries i can't answer! be glad when its done.

luvvies, how r the meds going, any word from the nurse.

WBN, in times like this, i just visualise a snowplough. Then think- keep buggering on. It worked for Churchill!
You've made great progress, the house will be sold and it'll be one less worry. Well done.

DH has just been with MIL visiting nursing homes for her dementia care (now too demented for her very sheltered housing). New shiny home visited yesterday. Nurse in charge asked MIL questions about her health including whether she wanted to be resuscitated! Is this normal? The NH will request report from GP and get social services assessment (fwiw since the person carrying this out was clueless).

Thanks for asking Wynken and wyrd. She's just the same. Nurse has been today and was very nice. I made some clear statements about the anxiety diagnosis and she said she had an open mind, but that didn't stop the endless anxiety-related leading questions. At the start she asked "how are you feeling", mum's reply was that she felt confused and that she was a nuisance. So the line of questioning went down "how long have you felt a nuisance?" The answer is really "for as long as I've felt confused" but we never really got to that.

She volunteered a view that there was no point doing any other cognitive tests as the anxiety would stop her performing well.

Mum can hold a conversation perfectly well when you are asking her a series of questions about how she is feeling. But there was no way for her to "demonstrate" all the memory and cognitive function problems that I see daily. I explained it, but I'm really convinced that as they don't see it in the way they interact with her, they don't believe me. e.g. while we were waiting for the nurse, she asked me 3 times in 5 minutes what we were doing that day. She had no recollection of the answer at all.

I agree she has some anxiety, but it still stems from the confusion. The nurse agreed that she doesn't seem anxious in herself. She did an anxiety questionnaire with her. But you can answer all those questions in the light of the confusion making her anxious. They are saying that all this started with me having a minor operation, and that has triggered it. But mum was so independent at the time, so me being out of action wouldn't have caused any change to her routines and activities.

Anyway, she's started on the medication today and had no reaction thus far, so I have told her she's not going to!

Nurse is back in 10 days to carry on...

Lilymaid, I was in the other room for my Mother's assessment so I'm not sure what they asked. The resuscitation question was asked pretty soon after she moved on though and recorded on her Care Plan.

Luvvies, the issue of anxiety vs something else aside, it is really common for the day to day issues not to be apparent to others. Wha about keeping a diary and recording all the issues you come across ? It's something solid then for the nurse to read when she comes back. This must all be very difficult and frustrating for you .

Am liking the idea of being a snowplough ! Had the day off today, got the last bits out and scrubbed everything clean. The transfer document has now been signed by Brother, the Solicitor has seen a photo and said it's correct and it will be here Wednesday so fingers crossed for exchange and completion next week. Am off to sink a few G&T's tonight with old school friend.

How is your Dad doing Bob?

wynken-good news on the house front, enjoy your G&T's you've earnt them!
luvvies- good idea from Wynken about the diary they need to know how it really is.My mum used to say everything was ok to the mental health team and sort of upped her game a bit when talking to them then, would be back to being confused with me. So frustrating. Hang in there. It's emotionally draining don't forget to look after yourself too.

Thanks, yes I will keep a diary, great idea.
I'm rubbish at looking after myself, run around like a mad thing doing too much, work, teenagers etc. but tomorrow I'm taking a friend to collect a new puppy so lots of time for chat and puppy cuddles. Got something good on in the evening too. Leaving my son and husband to deal with mum.

Luvvies, it is not unusual for people with dementia to really concentrate during tests and perform better than expected. Awful to say, but if your mum is retested, you could make sure she is tired or upset before going into the test. In real life if something goes wrong, eg forgetting the way home, fear, panic etc are likely to further reduce capacity. That is the capacity that matters.

Thanks Needmore. In fact she hasn't been tested at all apart from a GP asking her a few questions a couple of months ago.
They want to wait until she is less anxious so they don't get a false reading. She's quite distressed and agitated at the moment, but I can't see her getting less "anxious" about what's going on until she feels less confused, cotton wool headed, forgetful etc. that's what's making her anxious - she worried about what's going on and whether she'll get back to normal.
So it'll be a long wait then!

I agree. My mothers defensiveness sometimes expressed in quite an aggressive way, only calmed down after she was diagnosed. This opened the way to acknowledgement and acceptance that she has 'a bad memory', and therefore acceptance of a level of support in sheltered housing and from external carers, plus medication (Aricept).

The reduced stress levels as she no longer tries to cope on her own means her memory test results actually improved and I was able to reduce her daily carer to 30 mins a day. A year later and I probably need to start increasing the care again. However diagnosis has bought a year when she has been surprisingly content.

I therefore don't regret ensuring she was pretty discombobulated when taking the test. Even now when she is laying down very few short term memories, she can be very convincing and acquaintances often don't spot there is a problem.

Her psychiatrist said that dementia often leads to depression. Therefore small improvements in clarity brough by Aricept can lead to much greater improvements as these improvements help lift the depression.

Rereading your posts and given the rapid onset it seems as if there might be more things that need to be ruled out, say a chemical or hormonal imbalance.

What about a post on the Alzheimers Assn website with a request for suggestions of possible underlying causes. Anxiety would seem a natural response to her situation. Not necessarily a cause.

My dad's brain tumour first showed through anxiety, repeated questions and some odd behaviour, though with clarity and good cognitive function in between. However the scan should have ruled this out.

Good luck.

Hi all. Not been on here before. Just wanted somewhere to vent after reading a thread in Pregnancy (came up in Active) where the OP was rather unpleasant about people who take the decision to have their elderly relatives looked after in care homes, rather than doing it themselves. I really wanted to tell the snotty bitch to fuck to the far side of off but felt too weary to manage the fallout. Argh!

Hugs to everyone who has a loved one with evil, vile, bastarding dementia.

Hi Fishandjam. Bloody annoying people saying that when they don't know the reality. I can't be bothered to say anything these days. I'm sure all of thought we'd manage to keep our relatives at home longer but then when you live the actuality of Dementia you realise it gets to the point where your relative is likely to outlive you if you carry on.

All the professionals I've spoken to say it is too much for one person to care for someone with Dementia 24/7. This just doesn't filter through to the general public. Please feel free to vent away here.

Hi Fishandjam thanks for your post.It makes me angry being judged by ignorant people like that. We have all had to deal with the feelings of guilt but as Wynken says it's not possible to give someone with dementia the constant care and attention they need in the home environment. Nobody wants to be in a care home but there is no alternative.

I saw mum this morning, she says the same stuff every visit, how she hates it and is excited to be leaving soon. She has the idea that once her house is sold and the money arrives she will be back to normal and buy herself a house, but asks me how to do it. It's so sad. I took her out last week for a short walk on the seafront and she was a bit wobbly I was scared she would fall. She kept saying she wished she could do what all the other people were doing, cycling, walking dogs etc. I come away with a headache and no energy. I do find it hard not to let it affect the rest of my day with the kids and all, in fact it does affect it to be honest.
Sorry for the whinge feeling it a bit today. How are you all doing?

Hi everyone. I agreed fish, ignorant people who make those statements are highly irritating. I ve had it too and it pisses me off . Dementia care cannot be done part time it is 24/7 past a certain stage .
My Dad is still at home but it has been a rocky 2 weeks. He is very restless and keeps boarding trains. Last week I had to go to some hospital at the other end of London, he'd been found wandering around the local train station in a confused state. Every day last week he boarded a train and apart from Saturday when he was with me, he got lost and rescued by me or the transport police ( who have been great on the whole. Just helpful and non judgemental). His care package has de increased to 10 hours a day, it s going to cost a packet. But it s his money and of course he wants to be at home. Didn t visit him this weekend because DH was away and I had the kids. No calls so fit here was a crisis I didn t hear and I am grateful. But I m on tenterhooks most of the time. That s what having a parent with dementia does to you.

Wyrd, I have similar when I go and visit. She thinks she'll go into a room in new CH then be able to transfer to a flat, but she's past that stage . All she says is how awful it is etc and is hard to distract.

Bob that sounds really tough and I remember that well. That has definitely gone away now she is in a Home. There are other issues but I'm not in that awful perpetual state of crisis anticipation. I'm glad you did get a break at the weekend and hope this week has been uneventful so far.

Call from solicitor, exchange and completion tomorrow if everything goes to plan. It's been 14 weeks since she left her house and I'd been very focused on the process of clearing and selling . Now I am nearly there I did have a moment earlier where I felt very sad. Am distracting myself with plants to take my mind off it. Am off with a friend to her Mum's house tomorrow evening to meet Estate Agents, her Mum died a few weeks ago. Needmoresleep was incredibly kind and was there when I did it so I'm paying it forwards.

How is everyone?

Well, having made it nearly 4 months with neither of my parents going to hospital as an emergency, that finished yesterday.

Mum collapsed on the loo but remembered to press her alarm (hooray) and the careline spoke to dad through his, sent him to find her, then called the ambulance which came out immediatly. And then phoned dad back later as he hadn't sounded well and insisted on phoning their gp to get him to see dad. Fab service from them.
Nothing particularly found wrong with mum as usual, so prob another temporal lobe seizure. Shes back home again, but its wiped dad out.