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

Can I come in here and hide? I am so sad. I want to read all the posts and write a big post but I can't I just want to say hi. It is my Gran, not my parent, but she is like a Mum to me (I don't speak to or see my Mum) and I am very close to her. She has gone rapidly downhill and today thought I was my aunt. I am devastated, i feel like she has gone.

Welcome Giraffes, we all know what its like to just need to wibble and have some virtual hugs.
Has your Gran been checked for things like a UTI if shes had a very rapid downturn? They can cause a lot of confusion, and my mum is very markedly worse if she gets constipated.

I'm not entirely sure she has gone back to our GP as was registered with the CH's GP. I know the cleaner was saying about her registering with her GP as felt she'd be good with her.

The cleaner is concerned about false allegations being made against her which I do understand. As far as I can tell she is the bridge between the Carers and my Brother. So in telling her what my Mum has said she has hopefully passed it on.

My Brother however has a habit of ignoring what he doesn't want to hear so as wells the clear conscience (which I agree is very important ) she will need to cover herself. Also my Mum won't say anything to anyone as has enough about her to know it could lead to her having to leave her home. To be honest I was fooled as to the real situation after several phone calls and a two hour trip out. Bloody nightmare that was totally predictable and I feel I have been bullied and intimidated into silence. Most people after being told that a Carer had to lock themselves in a toilet for their safety admit the live in care isn't working, the boards are full of it. Not my family.

Hi Giraffe. I'm very very sorry to read that. Is there any chance there could be an infection such as a UTI that is exacerbating the Dementia?

Thanks, I will try to type some of what has been going on - you both mentioned UTI - initially they thought yes and we would love it to be that, but there are no actual signs of infection in urine or bloods etc. I can't remember the exact days things happened as all been a blur but in summary -

• lives alone, manages fairly well with our support

-past 18 months diagnosed with dementia and sees a team and has tablets

• changeable on a daily/hourly basis
• sometimes you can speak and have a normal conversation and feel she participating appropriately others you can tell she has no idea but she maintains the social norms and can tell she feels embarrassed/confused.
• has panic button in house and on wrist but has never pushed it despite at times having issues
• My Dad and I visit regularly - he does every day and phones a good few times a day. I phone and visit a few times a week and bring shopping etc/locate lost items
• recently she has been calling me my aunts name more and more - but still speaking to me as if I am me

So last week she had a fall, no memory of it but has black eye, bleeding nose/mouth and badly hurt shoulder. - She didn't ask for help, Dad called and then went down and found her - hosp trip and then dischanrcged same day. Bed smelled of pee. Noted that she not been drinking much.

Dad stayed weekend, all ok.

Monday morning another fall and unable to get up, Dad called ambulance. Clothes smelled of pee.

My Dad and I were with her at hosp - I had to push hosp to ensure sides were up on bed. I managed to get her to drink a bit. she was very confused and not really there iykwim? Started on ABs in case urine infection that couldnt detect. Also on a drip.

Tuesday was moved to a different ward within that hosp - and then to a specialist ward at another hosp. So 3 different places on one day - when my Dad and I went in that night it was awful - but quite amusing :) My norm ally placid, polite friendly Gran was impatient and indignant. She told us she was there waiting for this film she had been promised - she flitted between that and being in the film. "See the silver light" she kept saying. We were chatting at one point and she burst in to a loud rendition of "Oh why are we waiting?" Most unlike her! Adamant she didn't want tea/sleep as she was going to see this silver light then go home.

That night staff struggled with her - she spent hours and hours walking around trying to sort peoples stuff - she used to be a nurse so perhaps something like that? She was then sedated

When I saw her on Wed she slept the whole time!

And yesterday initially when I went in I was delighted - she was sitting in a chair, dressed in her normal clothes and lit up when I walked in. She called my my aunts name but she often does. I went and got us tea and biccies. She now has a catheter to monitor urine output.

However she appeared to think I actually was my aunt :( My aunt lives in Finland so she was asking about the snow, how long was i over for etc. I had to fight back tears. She has never done that before. A few points in the conversation she used my name and asked me a relevant question to me, but most of the time I was my aunt. How do I handle this? I don't know. I just answered the question vaguely and changed subject which she seemed content with. Is that right? If I was to correct her I'd have been doing it all the time and I have read that it wrong?

I feel so sad that she might not speak to me as me again. I am very close to her. I will go and read back some posts on here now with a cuppa. Sorry for huge post, I really don't know how to handle all this.

Hopefully giraffes the Abs will help. My mum was exactly like this in hospital especially if she was moved to a different ward. Once we found a NH she has improved. In fact in April/May we thought she only had a couple of weeks to live but she is still here. Not sure if it is a good thing or not, as I find now with my Mum that some days are good but others she thinks I am her sister. Some days she is really nasty and confused, others fairly "normal".
kalms My husband will not visit, nor will my sister's husband. They say it brings back bad memories of their parents. I can't force them to go. My sons also find it difficult as they both work 7 days a week and the NH is not in the same town. I do take grandchildren sometimes. I don't really think it matters as Mum cannot remember that I have been. My sister has been really poorly since her cruise so she hasn't seen Mum for nearly 5 weeks so I have been doing extra. I am exhausted as it can take an hour to get there and sometimes longer back as traffic is heavier. Dreading snow and ice.

Hi thanks pud I am really hoping she comes back to herself. Today she knew me as me - but when I arrived she said she had been waiting for me and she had packed up her stuff and said I was coming to take her out to a concert - she had been telling everyone all day! Also talking about a lot of people from the past etc. I managed to settle her before she left.

Oh pud sounds like that is really exhausting :(

I am a mum of two boys and have a grandmother with dementia.

My Gran has been in a care home for around 7 years. About a year or so ago the managment at the home changed, and we are not so happy with her care. We are trying to move her but its being opposed by the home.

It was only recently that I discovered - by requesting a drugs list from her GP - that she is on a prescription for anti-depressants - Citalopram. I was surprised by this as she has not suffered from depression previously. Since she has been taking the drugs she has been increasingly muddled and also unsteady on her feet.

I have been researching the use of anti-depressants for dementia patients. Firstly I was surprised to find out that anti-depressants are very commonly prescribed to dementia patients. I also discovered a couple of studies. One has found them to be ineffective in treating depression in dementia. The other found them to triple the risk of falls, which tallies with my mum being unsteady on her feet.

I am now asking her GP to withdraw her from the drug.

I was wondering if anyone else has experienced similar problems?

Hi Joey and welcome. I'm afraid I have no experience of anti depressants and Dementia.

Giraffe is she doing any better ? Pudcat your drive does sound like hard work.

It's all gone a bit pear shaped with the Carers and Mum. Had email from my Brother, he thinks she would be better going back to CH. He has emailed the SW to ask her to go and assess the situation. The poor carers are struggling and Mum's mental state rapidly going downhill. I suspect she is spitting out her meds as when I took the dog to see her she produced liver from lunch carefully hidden in a tissue in her pocket. Possible UTI too.

Hi wynken. I m so sorry things are going back to be so difficult. When dad had a downturn with increased confusion and aggression about 6 weeks ago the GP came round to take a urine sample. In the event he didn't have a UTI. It was just deterioration sadly. The aggression us settled but his IQ has taken yet another downturn.
Anyway maybe you could see if theGP can come out and look at her? Dad s is very experienced and expressed quite discretely to me he just thought it was deterioration. I m tempted to say it's good your brother feels she d be better off in the CH,but he's mucked you around so much I don t wan to get my hopes up. It does sound like residential care is the most appropriate setting for her now.

Thanks Bob. She hates her GP, thinks he gets commission from the CH and is making her and me ill she said today. There is another who might be able to come. I'm due to speak to my Brother after counselling tomorrow so will suggest at the very least a sample is sent in.

He did email the SW this afternoon and then said what happens next will be a true best interests decision based on available options and knowledge of the upsides and downsides. I think maybe SW has said there should be a case conference but am speculating. He's hoping she takes to the next Carer but she is convinced they all know each other in South Africa and word has gone round. Fair to say she is in a high state of paranoia...

I am sorry about your Dad. Have there been any decisions regarding him and your Brother ?

I'm really sad to hear that Wynken, but the CH did your mum so much good there must be an upside somewhere.

Joey, my mums on an antidepressant, but its for nerve pain rather than depression.

Mum is unwell again and dad is stressed. Mums friends have asked dad to just take her to their annual christmas lunch out 'for a bit' as shes too much for them. It makes him really sad, but I see their point. However, she won't be going at all if she's still vomiting on Thursday

Oh dear CMOT, I am really sorry to hear that. Your poor Mum and Dad and poor you.

The CH definitely got her back on an even keel. I just hope, if decided she needs to go somewhere that they will take her. Can't tell you how sorry I feel for the next poor Carer coming Wednesday . I think she is vile to them, the current one is very nice but really struggling. I was worried at one point she was been abused. Now I think she was just trying to get me onside to get rid of the Carers.

With her paranoia that high, it would take a special carer to talk her round - especially if shes already establishing issues around them.

Dad just phoned and has decided to get the house valued today, so we've just had a conversation about him moving up here and her going into a home in this town. Shes still vomiting, and he's upset as one of her friends has just told him that mum was sick in her car last week. Why tell him?

Ultimately if that happens CMOT, life will be easier for all of you once it's happened and you've all adjusted. Horrible decisions to have to make. I guess the friend misguidedly thought he should know she was sick again as it might be important ? I can imagine how stressed your poor Dad was though.

The cleaner text, apparently she is very paranoid today. The Carer hadn't been watching her take the tablets so that's to change and antibiotics for UTI ready tomorrow, I'm certain she has one.

Long talk with Brother who says he got her out of CH so he should put her back. He seems to realise now what I went through, pointed out I've had to watch her deteriorate as well which he has been shielded from . He says he took over the responsibility of her so needs to step up and contine and I shouldn't do much but he could do with help with a few bits. He knows it can't go back to how it was.

Plan is to try and stabilise her again at home before Christmas and he doesn't want a decision now, but knows deep down the CH did her a lot of good. They were going to let him know if the flat goes. SW will be going in soon.

Hi CMOT. Sorry to hear about your mum's friends. Dad was always very sociable and it's been very hard having to stand around and see many of them drop by the wayside/ send me letters/ telephone me expressing their concerns and their "I'd love to be able to do more but..."routine. Ditto his siblings. Having said that, some have been more than kind and stuck around offering outings/ help getting to church etc. I've also appreciated small things such as neighbours making sure his bins go out on the right day.
Anyway, it sounds like your Dad is looking into the future and making some difficult decisions. How do you feel about his plans?

Did your brother manage an apology in that Wynken?

Them moving out of the house (and its huge garden) would be fabulous tbh. Especially if they moved close to us so dad could enjoy doing things like fussing the chickens/dog/pony and going out with us, I could easily take dad to the hospital, and theres lots of chatty oldies here so he'd be able to socialise more. And I could visit mum daily, pop in for 10 minutes etc

It would be sad to see the house go as its the only house they've lived in since 1968, and only the third house dad has ever lived in.

That sounds like a really good plan and I hope once over the upset and change of routine for your mum of residential living, might give your dad a new. Lease of life. Good luck!

It sounds like your Dad will have a very good quality of life once the upheaval over. It will take a huge amount of worry off you.

Not exactly an apology but an admission that he's understanding better what I went through. As he said, he's golden child so didn't get it too bad from her. And I pointed out he hasn't had to see her decline and I will need to as here. The Carer just said to me that he said today he was wrong, everyone else was right. Poor woman, she looked very strained .

Welcome to everyone who has posted recently. I will try to reply individually as I remember the chaos and challenges of the pre and early post diagnosis days and how alone and overwhelmed I felt. There can be a way through, but nothing much is easy, so please keep posting. Between us we have some of the answers, and genuinely empathise. Dementia is horrid.

CMOT it is good to hear that your dad is willing to consider what could be a sustainable solution and one that could leave you each individually with a better quality of life.

WBN. Your brother's statement that he took your mum out of the CH so needs to put her back is not good enough. It is as if he still thinks decision making need to revolve around him, not your mother's needs.
There is no guarantee that he will come over in the New Year. In fact I suspect he wont return whilst she is alive. At the moment she appears to be in a vicious cycle of stress leading to a worsening mental state leading to poor compliance with medication leading to paranoia and more stress.

If she is not moved soon she may have deteriorated to the extent that she will need more intensive care and not have access to the community and relative independent living she had before. Your brother has already done a lot of damage. Christmas in her own home alone with a carer will be awful. If he wants you to 'do a few bits' he needs to listen. Ditto with cleaner who has proved to be a real friend of your mother's but who like you may need to walk away from what is a stressful situation.

Tell him you wont get re engaged unless it is with active arrangements to move her to a more supportive care setting. Or until he is actually in the UK and thus capable of making informed decisions. Explain that the cleaner is now picking up an unacceptable burden, not dissimilar to the one you were under. Your mother is not an experiment. As Attorney he has a huge responsibility to act in her best interests.

I think he meant if it comes to it and in her best interests to go back then I don't have involvement as he has to take consequences of his actions. I did get the words 'I apologise' today and an acceptance that it has gone wrong as her mental state has deteriorated significantly. I hear what you're saying. I spelled out what myself , DH and the DC's had been through this year and the kind of things I have had to deal with from Mum over the years. He accepts that his scenario of more good than harm trying Live in Carers has in fact caused a significant deterioration.

Not sure exactly what's happening next except he wants SW to go in as soon a poss. I haven't spoken to my Mother today and definitely don't want to tomorrow but he says she is full of anger and hate I think she probably needs medical attention if she doesn't improve in the next couple of days with antibiotics.

She earlier said she would go back to CH for Christmas but has changed mind yet again. Goodness only knows what she is going to be like for the new Carer. He spoke to CH today who were initially frosty with him but once he explained what,s happening and that we are now speaking etc they were ok.

I think the situation is rapidly escalating and I'm not entirely confident that she won't totally flip as she is angry, full of hate, delusional and paranoid. There's a slight sinking feeling in my stomach that this could end up rather badly. I guess the next few days will tell...

I haven't yet said about if she doesn't get proper care now the risk of deterioration beyond the CH with the flat but am well aware you're right and it is something I warned him about very clearly before so he is aware. Mostly I haven't said as not been round much today and at one lovely moment he had decided she was going back middle of the month to CH and though he wanted to make one call to a local agency, that he was 99% sure that she would now be staying there. I am not happy about a scenario where she goes in and comes out.

Then he spoke to her and she changed her mind (surprise) and I think it's probably gone pretty pear shaped. He had a conversation today with cleaner I think who basically said same as me, time to go back in but can't be sure that's what she said. I also think the stark reality of his choices are sinking in.

My personal view is she won't go back voluntarily. He feels she may still pass a capacity test, who knows, I wouldn't like to comment. Just hope the SW gets there ASAP and deals with the mess this has descended into . I think if this carry on she may well be deemed a risk to others and we know how that goes. I saw an email from one Carer who said 'she has gone berserk ' . Or the antibiotics kick in, she did have a UTI and she fractionally improves till the next crisis.

I'm busy most of this week so have done as much as I am prepared/can do for now.

I hope something happens soon Wynken - for all of your sakes.

Good news here - great aunt is well enough to have moved to a community hospital prior to discharge. An AgeUK person visited mum and she'll now have a volunteer visit once a week to take her out. AgeUK will also find someone to try and settle her into going to the day centre.

But last night mum fell asleep on the downstairs bed at 5, dad went to sleep at 9, then woke up at 11 to hear her moving around. She'd woken up and decided it was breakfast time. Her first big time unawareness.

Hello, popping in briefly to say hope you all doing ok. In a mad rush tonight and tomorrow. Start my first clinical hours as a play therapist tomorrow - 100 to do until I graduate this year.

Will be on over weekend to catch up. Take care all in this horrid weather

How is everyone?

That is good news about your Aunt CMOT but I'm sorry about your Mum . That must be upsetting for you and your Dad.

Giraffe, hope your first clinical hours went well.

SW and CH went to see Mum this weekend. Saturday morning she rang my phone 4 times but I didn't answer and cleaner plus carer sorted it. She likes this carer and apparently is much calmer now. Her short term memory has hugely deteriorated and my Brother says she isn't the same woman she was 2 months ago .

Hopefully he's set it up so he can get her back in if carer walks out. I think he would like her to be hone over Christmas and I think if she can be maybe it would be better. She will kick off when she needs to go back so we all know it is the calm before the storm and I'm trying to keep a healthy distance.

DH had an email to say his 87 year old Dad who lives alone in Spain and has Parkinson's, diabetes, hard of hearing has been diagnosed with Glaucoma and got 12-24 months of vision left. We need to try and get to the bottom of how accurate that is so need a bit of calm with my Mother. DH is very stressed and looks awful.

How's everyone else doing ?