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

Hi all. Just read your recent posts and wondering if you are all ok. My dad has got worse this week, he is being totally akward for the carers and my step mum is really anxious no -one will want to work with him anymore soon. He was ok last week so cannot understand sudden change. Feeling in my gut that he will have to be moved to a care home, which is my nightmare scenario :(

Sorry to hear that Kalms. Alas things can go up and down so fast.

A good care home needn't be a nightmare. Now is the time to start looking round at places and seeing if you can find somewhere that is appropriate for your dad when the time comes.
My grandma was in two really nice homes - one where it was primarily care and then a specialist dementia units and they cared very well for her. I've spent a lot of time finding out homes near to mum and near to me, reading the care reports etc

Thanks, my stepmum is sinking with the stress. We all thought he would do well at home but I cannot see her coping if things dont improve. She cannot even sleep because dad puts the bedroom light on at all hours of the night and is constantly up and down

Sorry to hear that Kalms. From what I understand this is how Vascular Dementia is, very up and down with sudden deterioration.

I do understand your fear about a CH but there are some good ones. Mum became hugely better at the one she was in this summer and as a result of the care she received is much better now than I thought she could be as she was in a pretty bad way at one point.

When I was dealing with the daily carers the Manager did ring and say a couple were finding Mum difficult but I pointed out firmly she has Dementia and will be so the needed make sure people going had received adequate Dementia Training. This helped a bit.

It's all layers of sadness. My dad with dementia, brother with terminal cancer and our son's daily anger issues with his ADHD. Walking helps to put it all into perspective. The exercise and fresh air

Hi kalms, there are some good homes about. Have a look at this site. There are reviews for homes and access to inspection reports.
www.carehome.co.uk/care_search.cfm

My Mum was very poorly when she left hospital and we thought she would only last a couple of weeks. But she has now been there 6 months. She is so well looked after. they have just had an inspection which was excellent. It is a lovely caring place.

Just an update. Went to see dad last weekend, still his usual confused self of course, but loved going out for a meal with me and it was obvious in the restaurant (by the way staff greeted him) he'd been there before recently, and on his own. Managed to hold it together until the late afternoon, when Dad put pressure on for me to leave as soon as we got home, despite the fact that that would have meant a 45 min wait at the station. I told him not to be so selfish (pointless i know, and really not how you should react to someone with dementia). While i was at it I told my brother how disappointed I was at his attitude toward the carers (if he can he doesn t let them in). That he needed to make an effort for others, and that after all I'd done for him I wondered if he ever even thought about me. He said he did. I spelt out how bad it will get with Dad's dementia so he's under no illusions. And that he needs to go into a nursing home before long.
On Monday I went to my GP who signed me off sick for 2 weeks, which to be honset is a relief. I have decided not to see dad this week and just try and rest, I'll go early next week. Then i need to take some unpaid leave, to research nursing homes in Dad's town. That's what I've always dreaded, but really can't see any alternative now.

I'm really sorry Bob. You've done amazingly well to hold everything together as long as you have. It's really difficult trying to deal with a parent who is on their own, then you've got your Brother as well. There is a limit to what one person can do - that goes for CMOT too.

I know it's incredibly difficult but hold onto the fact that Needmoresleep and I have come out of the other side of crisis point. I know my Mother is at home again but whatever her and my Brother might say, the CH at the time without doubt got her back on her feet. I'll never forget her cleaner asking me if I was prepared ie. she thought she wasn't going to last much longer.

Easy to say and hard to do but please take care of yourself as best you can.

This is not my normal corner of Mumsnet
but I hope that you forgive me for butting in.

A very, very dear friend of mine's dad shifted into the alternate reality that is dementia alzheimers.
He moved into a security ward in a lovely private nursing home and gradually started to shut down.
She (the only child) found the visits harder and harder

Trying to help her I suggested she used the "reminiscence bump"
and so she asked him about lots of things he'd done between the age of 17 and 24
he could no longer speak, but he smiled and chuckled and waved her goodbye

he died this week
her last memory is of her dad happy (in the past, but happy)

try it
the reminiscence bump peaks at 19 : even asking what they ate then might make them hungry.
and if it does not work, at least you tried

Thank you for taking the time to post that Talkinpeace. I am sorry t hear about your friend's Dad but glad her last memory of him is of him happy .

Went to take my Mum for coffee again today. She she'd totally forgotten and her cleaner was there, who is helping the carers as much as she can. Her seeming wellness last time was clearly her just holding herself together short term.

Current Carer is very nice. Apparently she is currently very paranoid again. Mum said to me that one Carer hit her across her face. Another she claims got right up in her face and said 'you're stupid and I'm going to make you go back to a Home. ' claims she can't tell my Brother as he has threatened if another two Carers complain she will go back to a Home.

I guess I have to assume this is fabricated. The Carer who Mum says hit her is a friend of current Carer who said she is traumatised and has had to see GP and reported incident to the police i think she said but can't be sure as was stood with my mouth open .Claims she had to lock herself in loo as Mum was aggressive. Think she left after 4 days. Carer's DH witnessed her bebg verbally harsh with Mum. All sounds very Another Carer has been accused of theft nd none of them have wanted to go back.

Paperwork is clearly an issue in that she can't cope properly. Cleaner worried that the money is running out and that Brother doesn't seem to have sorted mortgage on the house. Brother buying a car as thinks Mum will try and use use of her car as control of carers. It's just cost £800 to get hers back on the road supposedly .

Her short term memory is apparently bad at the moment too. No idea of the truth of half of this. Was a bit of a shock to be honest as talks on the phone made her sound not too bad and she held it together for coffee last time. Cleaner thinks the Carers swapping every two weeks not good for her and thinks she would be better where she was . Very sad, what a mess. I asked if anyone knew when my Brother is coming and was met by silence. Carer said she was refusing a couple of days ago to let Brother have POA but Mum said today that he will be.

Help please.....Mum has been diagnosed with Frontal Temporal Dementia today, she wouldn't go I went alone. As you do I have done some research on the net and feel mortified by what I read. Also there seems a high chance it's familiaral and my Dad had DLB. I told my husband and he said 'great I have that to look forward to then' so I feel such a mixture of emotions right now. Angry at him, sad for my Mum fear of the future (again) advice from anyone please?

My advice would be to take it a day at a time Skyblue.
My mums diagnosis is 'fronto temporal variant Alzheimers' which means at this point she basically has no temporal lobes left, and has atrophy of her whole brain. Practically, this means that she has lots of problems with words (so speaking and understanding), doesn't recognise things, and has issues with eating.
But thats been a long, slow progression with bits where she didn't get worse for ages. My mums condition isn't helped by her other health issues.

CMOT yes her speech has been odd for a while, sgtruggling to find words, and her eating well, that's an ongoing issue she has no motivation to prepare or eat a meal and at 5,5 stone it's such a worry. Felt really tearful all day at work, horrible trying to concentrate

Really sorry to hear this Skyblue. However much you expect a diagnosis it's a shock, I remember being very tearful for a bit. Not surprised you are angry at DH, he was very insensitive

Thanks so much for your messages to me, I haven't been back on the thread for a while as I've found it so depressing and didn't feel like I had any support to give anyone. I just wanted to let you know that we have been looking for a care home for my dad. After an accident that he had I realised that I couldn't cope with it anymore. We got a list if care homes from the Alzheimer's soc. I went to visit some and he is going in for a trial visit for a month next week. The thing I didn't realise is that he has to be there for a while to see if they
can cope with
Him as if they can't he will be back home and we
Will be
back to square one! It's like trying to get your kid into a good school... So we will see how it goes. Here goes the next stage and hugs to all of you dealing with this, it's so difficult
... X

Rachael

Its nice to see you back and with some positive news.

I guess they have to have people for a while as mist people will be disorientated when they first arrive. Some will improve in a good care setting, others won't, etc.

Anyway I hope it goes well for your dad. And if the home can't manage him, then you should be clear that you can't either.

in the meantime enjoy some very well earned rest. I think you will be surprised at how tired you are.

Hello, All.

I am fairly new to this message board and would just like to introduce myself.

I helped care for my grandparents. Grandpa had a stroke and was diagnosed with vascular dementia. Grandma had senile dementia. Sadly, they have both passed on a few years back. Now, we worry my father is slowly going the dementia route as well. On top of that, I suspect he has depression. He refuses to even talk about the possibility of it. He's driving my mother crazy. And us kids too.

Well, hugs to everyone. I hope you all have a good day and find some time to also look out for yourselves. Caregivers need a break too.

Thanks Needmoresleep. I have been feeling quite tearful actually, a combination of relief and anxiety. Now I have to get on with my own life! I haven't worked for 2 years and feel pretty deskilled at the moment. Oh well at least I will have some time to focus on myself. How are things with you?

Hi everyone. Hope it helps to be able to talk to others on here. Update on my dad. He was doing so well at home, really happy. Sitting with his beloved cat,enjoying family visits and he was well supported by his wife and a good package of care. Unfortunately she has put him in a specialist dementia unit for a few weeks while they tweak his medication. My happy dad has reverted to sobbing and frustrated because he just wants to go home. He is picking up bad habits again and we just spent a couple of weeks ironing those out! I dont think he needs to be in there, but then again I dont have to live with it 24/7. Counting the days until he is home again.

Crossed fingers that your dad settles in Scarlet

Kalms, I know it must be really distressing to see your dad like that, but sometimes when someone with dementia says they want to go home it doesn't mean literally that, it can mean 'I'm confused about whats going on' or 'I want things to be like they were'. Also, being able to take a break is going to be key to your dad staying at home long term as caring 24/7, even with carers is incredibly draining.

Does anyone have any experience with hallucinations in people with dementia? Mum is expressing that at night she 'doesn't know if shes asleep or not, and there are strange things that might be dreams or not'

Does anyone have a partner like mine who won't visit? My husband won't visit my dad with me. I feel very let down by him.His reason is that his nan was in a care home and it brings back memories

Hi Savtoosh, sorry to hear about your Dad. You're right, breaks are very important.

Scarlet, I have my fingers crossed for your Dad and hope as Needmoresleep says, you get some rest.

CMOT, my Mother has hallucinated before, visual and auditory ones. A couple of visual ones were whilst with me driving. One was in bad weather and she said I had driven over a roundabout (I hadn't though shows so convincing I went back to look another time) and the other was there was builders equipment in car park of corner shop and she thought there was a big hole in the front of the shop, she remembered this a few days later.

Those I think were the brain making a story from uncertain visual information, a processing type error. The other one I'm aware of is when she saw David Cameron in her bedroom . That was around the time she was hearing knocking on the door at night. We discussed this with her Memory Nurse whose approach was to gently make her realise that what she saw and heard wasn't real. There are drugs available but apparent,y they don't give them unless people are very distressed by the hallucinations.

I've been stewing on what I found on Monday and am concerned. There is a possibility My Mother has become violent. However the Cleaner feels this may well be a fabrication of a previous Carer to cover her back. mum is claiming she has been physically and verbally abused by Carers. I'm aware this is most likely to be fabricatiion but she clims she is unable to tell my Brother as he will put her back in a CH.

The Carers are well aware that he will do whatever it takes to make this work (Carer's words). The Agency used was in the News a couple of years ago as the suspended someone for suspected theft then reinstated. Person was caught later after further offences.

Where is the protection for my Mother if Carers are aware Brother will do whatever it takes and my Mother is too scared to tell him? Who will be doing the paperwork she is clearly unable to do ? I am unable to say anything or he will flip and properly sack DH. Plus I am under GP's orders not to be involved to protect my health. he still hasn't seen her or at least 4.5 years and no one knows when he is coming back.

I suspect you cant do much, given the history, until there is evidence that she is really at risk. Then Social Services.

In the meantime you and the cleaner should keep a log of incidents, so if something 'an accident' happens there is confirmation that this is not an isolated occurance.

Not great. The alternative might be for the cleaner to write a carefully worded email to your brother, perhaps saying there have been a number of problems. Would he like her to report them to him as they happen so he can take up with the agency. Perhaps explain your mother feels unable to report directly. Leave any sort of judgement about his decision making or his failure to visit out of it to try and avoid getting his back up. At least then he knows and the responsibility lies entirely with him. He probably wont do anything but at least both you and the cleaner have clear consciences.

With no POA in place and if your mum has really deteriorated SS can take over and make more sensible decisions.

Completely silly of course.

CMOT my mother always slept walked and had night terrors. She says it is far worse now. Indeed she says she never wants to sleep anywhere other than in her own bed as she hates waking up disorientated.

I can't go to SS at any point or he will sack DH. POA for him is in the process of being submitted for registration.

Think suggesting to the cleaner to keep a log is an idea. I can point out that there is a SW involved who will turn up at some point and it will protect herself given she works with children.

So what happens if I tell someone what i said above who has the same Manager as the SW, when we are in the Pub. Would they have a professional duty to report that to the SW concerned if they felt a vulnerable adult is at risk ?

Given the history I suspect the problems will have to get worse before SS will do anything. They will need a clear cut case.

However keeping a log now of issues and ideally having the cleaner report these to your brother would seem a sesible precaution.

Nothing about the cleaner working with children. Just about you both having clear consciences when things get worse...which they will. This care approach was never going to be sustainable into the longer term.

If/when you feel intervention is needed you could go to the GP. He can then call your mum in for a 'medication review' or something or make a home visit and make his own assessment of the situation. He is an appropriate person to do this and knows the background. If not it could be a neighbour or really anyone. But not you.

Worth holding fire to a point where your brother may recognise that he wont win a legal fight.