To ask for your experiences with parental dementia?

[Norrisville]

I'm travelling home (fairly long distance) this weekend to sit down with my sister and figure out how we can help our mum. We've suspected the onset of dementia for some time and it's getting markedly worse. My sister has taken her for assessments and the outcome is variable - she seems to 'perk up' when she's talking to professionals, but then day to day it's becoming more alarming just how much of her short term memory has gone entirely.

We're both feeling a bit lost - we've done lots of online research but I guess we're trying to find some sort of map through it all.

If any of you have been through this, do you have any advice that you wish you'd been given eat the beginning? Any sources of helpful resources we could look at to help us figure out what we need to make sure we put in place for her? TIA...

We are having the same problem with MIL . Definitely get help ,advice etc before it becomes emergency care ie falls etc . Look at residential homes / care homes so you both have an idea about how to help your Mum 💐

1. Claim attendance allowance
2. Be aware of sundowning and try to plan a calm routine for your Mum at that time of day. She may need more help in the early evening than earlier in the day and is likely to need a carer or family member to help her to stay calm in the evenings as her condition progresses.
3. Share responsibility or arrange/ pay for help. It is too much for any one adult child to take the majority responsibility for the care of their parent; Once the illness really sets in it is emotionally and physically exhausting caring for them. This is the case even if one son/daughter lives closer, has fewer other responsibilities, has always been emotionally closer etc. Caring full-time is all consuming.
4. When people think of dementia, they think of memory loss but sadly the things that make dementia care so difficult are the sufferer's confusion (e.g. alternating between searching for their long deceased parents and trying to phone for a fire engine for an imagined fire or attempting to escape from the house because they think they have been kidnapped; distress and anger (even the nicest people can become angry and aggressive when their frontal lobes are affected by vascular dementia or Alzheimer's); wakefulness/sleeplessness and later incontinence. Diazepam, if a GP is willing to prescribe it, calming distracting activities and addressing the person's feelings rather than contradicting their delusions can help.

Power of Attorney asap, if you don’t already have it.

All the following are from my own experience of 2 close relatives, but I’m not saying they’ll apply to every case.
Don’t try to correct them if/when they come out with weird stuff. If they had tea with the Queen last week, just say, ‘Oh, how lovely - what sort of cakes?’

Ditto when they have an angry bee in their bonnet about something that’s all in their own head, E.g. if they insist that neighbours/whoever have stolen something, say ‘Dear me, that’s terrible, I’ll get on to the police first thing tomorrow.’

(You can probably can repeat the same things ad lib, they won’t remember that you said it X times before.).

Don’t bother trying to write things down to remind them of anything, ditto e.g. ringing to remind them to take medication. They will forget as soon as they’ve turned their eyes away, or have put the phone down.

If they forget that someone’s died and ask where they are, and get very upset when you remind them, the next time (if they ask again soon) just say they’ve gone to the shops or to visit Auntie So and So.

Make copies of keys! Hiding such things away so successfully that you will never find them, is often a feature of dementia.

By a certain point, it’s likely that 24/7 care and supervision will be needed, which will usually mean a care home. Pious, sanctimonious people, who have very likely never had to live with dementia, will tell you how dreadfully selfish and uncaring it is to put a parent in a care home.
Ignore such people.

I’d just add that despite all the horror stories, very good care homes do exist, and they’re not necessarily by any means the most expensive. But do be prepared to look at many - and write off any that ask you to make an appointment for an initial visit.,

There is a brilliant forum on Alzheimer’s UK website called Talking Point which offers loads of support and has fact sheets galore.

If your mum did set up POAs for you then there will be some paperwork, once sent to the Office of Public Guardianship it is stamped and returned to the person setting it up, ie your mum, or possibly her solicitor if she used on. That is the original paperwork and is very precious, should not leave your sight! You need to pay a solicitor a nominal fee to certify and sign each page of each LPA which can then be presented to banks, energy companies, hospitals etc. I scanned in the certified copy onto my computer so I could print out more copies and not have to worry about getting them returned - never post out the original papers!

Be warned, many people with dementia seem to get confused by paperwork and letters, and end up throwing important things away. I had to sneak in when mum was out to get photos of bank accounts etc and at the same time took important documents home with me.

It’s also common for people with dementia to be able to “ hostess” for short periods of time with doctors and other professionals to hide their dementia symptoms but then to be very confused with family members who they do not need to impress.

My mum died with dementia three months ago so feel free to message me for any pertinent advice, there is a lot of technology out there which might be helpful in the future.

I agree with others, prepare for more than you ever think you'd need to.
The confusion will come out of nowhere. Changes in personality will come about quickly when confused.

Going through Alzheimers with FIL atm, he has been OK until he gets an infection then its a few weeks of very clear deterioration, which might have a day or two where things improve, to then get bad again.
We've had to get rid of his guns and he's given his driving licence back because he's now aware that he's a danger to everyone else.
A GP saw him about 8 weeks ago, FIL had no idea why he was at the appointment, he told the GP that my son (his grandson) was his son, and introduced him by my husbands name, then told the GP that my son was his nephew, and I was his wife.
He was annoyed by the questions.

The Dr was fantastic with him, but he's been having appointments pretty much weekly since and GP has told us to keep a diary, detailing his lucidity as much as his deterioration.

It's very stressful all around. Make sure you have opportunity to vent to people who understand

You need to get a PoA while your mum is able to understand what she's signing up to. Somebody has to countersign it. If it's decided that your mum has passed that stage it would mean going to the Court of Protection to enable you to carry out duties on your mum's behalf - that's a long drawn-out expensive process. I had to go through that when my 80+ mum got sectioned. I did eventually get the money back from my mum's accounts, as I eventually held guardianship for her, but in the meantime I was very lucky to have a partner who was able to foot all the bills involved.

@Ilovetocrochet > I second the Alzheimers UK website 'Talking Point' - I found it so useful when I was going through things with my mum. There was lots of hand-holding on there.

My mum died this year or pneumonia related to Alzheimers. She had been in a dementia home for three years. The early stages and diagnosis were a struggle

Like yours, my mum had good days and bad days. Things we noticed - she was constantly loosing or misplacing things keys, bus passes, purse. We bought her lanyards, trackers, spares but she would be bereft at these misplacements. She would say people were stealing her things and making up lies about the family. Accused a family member of trying to smother her with a pillow in the night - he lives and was in Australia.

Before she went into the home, she could no longer read documents, or relay information from the GP. She also appeared to be stuck on a roundabout of three or four subjects and she rarely veered from them. One of the big clues was her sudden fear and anxiety. Any noise startled her, she could hear people walking around the house even though she lived alone. She kept hearing windows being smashed. It was so sad to see her go through this.

I will say that dementia is complicated and one size does not fit all. My mother recognised faces and her visitors right up until the end but if I told her I had spoken to her yesterday she didn't remember. She wouldn't be able to remember what she had for breakfast but she remembered where she grew up and get trips to the seaside with her grandmother.

My close friend is going through the same thing with her mother but they are able to have a conversation about getting tested and help she may need in the future. I was never able to do that with my mum as she flatly denied anything was wrong and that it was everyone else. Have you been able to discuss what is happening to her.

You've got some good practical advice above, I hope it's useful for the future.

Wow, I'm so touched to all of the replies I've woken up to this morning. My whole body has been slowing tightening into one big knot as I prepare for this weekend's trip so having all of this to refer to is amazing. I've messaged my sister to get her to create a MN account so we can read these together. I'm going to start a spreadsheet (bit of a nerd) to make sure I capture everything and tick it off. Really really appreciate everyone's comments, thank you so much.

*touched by

Sorry, typing quickly as I get kids ready for school!!

Nothing to add to the good advice you’re getting here but sending you and your sister love and good wishes. It’s not an easy journey at all. I hope you get lots of smiles and joy in amongst the hard work ahead.
Best of luck x

Check that you have powers in place. I know you said you think your mum put them in place, but check. Full powers. If not, then get this sorted as soon as possible. Your mum may still be deemed to have capacity to make that decision.

My MIL died in August after living with us for 9 months. ( She was 99)
We had help set up in her bungalow until then.
Private carer 3 times a week to give her a hot lunch (M&S) and leave a sandwich for tea. Also sat and chatted and had coffee with her. Very important.
We covered the other days.
A local charity sent in a “friend” for an hour once a week, she became a true friend to MIL.
Phone call morning and night again just for a chat.
Alexa to turn lights on on voice command.
As things deteriorated we added more.
Call button, Key safe, cameras in living room and sunroom.
But when we realised that she was losing the ability to use the phone and microwave she moved in with us.
My hardest lesson was to learn that I don’t always have to the one in the right! A nod and a “oh wow! That sounds interesting”
or an acknowledgment that noises are frightening.
When she wanted her mummy or daddy I would say they had gone on ahead or were shopping.
May I recommend a book called Contented Dementia.
Other people have covered the paperwork needed so I won’t go into that.
Memory clinic were wonderful but we had to wait 6 months and she slid badly in that time. They prescribed Melatonin which was amazing, from being disturbed every 45 mins she slept through.
District Nurses helped us get a hospital type bed at home.
Social Services were worse than useless. I am still cross about them. False promises and hope and then snatched away.

Good luck, it’s certainly a journey.

I need to add that my mother loved her residential home she said it was like a hotel but MIL had huge and overwhelming fear and we said as long as she knew us we would keep her at home.
She knew us, on and off, right to the end.

wishing you well.

If I can say one thing it’s not to waste time correcting her , I spent weeks trying to remind mil that her husband had died/ she hasn’t had a dog for 20 years when I realised it was so much easier for us both to just go along with it . Yes I can hear the noise in the loft instead of arguing for hours there isn't one.
one of the ladies on her street used to work in a car home we were lucky she agreed to do 3 days a week this really took the pressure of us mil accepting her as a friend as no physical care was needed and she didn’t wear a uniform . Most days she just needed someone there” to have endless cups of tea and listen to her repeat herself.
we got a ring door bell and set her heating to a timer, we had to lock the boiler cupboard as she was convinced she couldn’t afford the heating. We got rid of any gas and the dreaded chip pan . We switched her to microwaveable meals/ left overs .
she really clung to her tv times it helped her know days and dates I think. We got her a notebook and a pen . It helped her anxiety to write things down . We re directed any calls from her house phone and deleted any unneeded numbers from her mobile .We put a huge whiteboard on the wall and wrote down any messages for her there . Every case is different but I wish someone had told me to Be prepared for the nasty side and never take anything to heart , mil had always been a fire cracker and dementia turned her into a nasty piece of work. She would get so worked up say the most horrible things but only in the evening , 6pm is her turning time.
I agree with pp, she could tell you every story from her childhood repeatedly but just could not retain any new Info.
I would say make sure gp is a aware get the referal to memort clinic , they prescribed the meds in June after a year but sadly just to late for her she moved Into a home in July after she began wondering at night and bothering the neighbours , and she has only just been given a social worker for her needs assessment. They are overwhelmed and will leave you if they think you are okay caring for her . Don’t leave it untill you reach crisis point. Good luck to you all X

This really resonated with me. My Dad (89) is now in his second care home, because the first - apparently a dementia specialist home - couldn't cope with his sundowning, which led to him becoming loud and aggressive. My Dad, who never raised a hand or his voice to us in his life. Personality change is the worst aspect here, but the impact on Dad's memory means he constantly asks where Mum is; she died in 2017.

His new home (which is also a nursing home, meaning they can accommodate his specific needs) was found for us by social services and we are enternally grateful - because you can look at as many homes in advance as you like, but if they haven''t got a place OR will not take your parent, there's no point setting your heart on a specific one. When Dad was first deemed in need of residential care (we'd had 4 carers a day in place for some months but he kept wandering and falling in the night, ending up in hospital multiple times), we were jusy told to 'find him a home'. Ringing round homes daily to be told "No place" is soul destroying.

OP, self-care, as others have said, is vital with this. My Dad has thought I was his sister for about 18 months now, which is heartbreaking (I wouldn't mind, but he didn't see his sister from one decade to the next and I do not look like her!). I spend time occasionally feeling very sad that my Dad as I knew him is gone and will never return.

Thank you for this interesting disucssion - it has answered some of the questions that are beginning to go around in my head.

I wondered what peoples views are around care home locations?

My father, 85, has noticeably declined in the last year, mother died 5 years ago. He is in a large detached house and has a cleaner and gardener to help but no care as such. I have broached with him the possibility of moving to a smaller house or maybe sheltered housing but he is insistent that he does not want to move.

I can to some extent appreciate his perspective as having lived in the village for 50 years or so he has reasonable local connections (although like many men I suspect these are passing acquaintances rather than deep friendships).As he deteriorates we will get carers in, I am hopeful that this can be arranged fairly easily.

There will, I imagine, come a point when he will need to go to a care home. Should we go for one that is near his current location (probably in town 3 miles away from the village) as he knows the area, may have some connection with other residents and there may be people who will go and see him from the village. Or should he be brought closer to us where we will be able to see him more regularly? We live around 70 miles away from him (90 minutes drive) and currently I tend to see him once a month or so. What do you reckon?

@susanye
When the time comes I would say local to you. Any move tends to have an effect and if/ when he deteriorates then close and easy to travel becomes very important.
We found as MIL got older she had fewer and fewer friends able to call in.

This is a really informative podcast.

.open.spotify.com/episode/4WSYUXFIMq1tKb34NXqgjd?si=AzIrCinxQ0alsBGbHwLrtQ&utm_source=copy-link

the ‘Contented dementia’ book comes highly recommended, I just read it and seems to make a lot of sense.

The best advice I was given (after get your POAs in place) was to go and your your local recommended nursing homes NOW so that if she does have a crisis/breaks a bone and you have to find a home quickly, you will at least have some idea of which you are happy with and which you are not. My sister and I started looking a good 14 months before we needed to use one. When she did ask to go into a care home (didn’t recognise her house any more, was scared at night, in home care was not sufficient) she needed something fast and it was so helpful to know that even though our first choice didn’t have space, our second choice was fine and could take her on Monday.
it is time really well spent.

Agree with others The Alzheimer’s society stuff is all excellent. One thing that has really helped mum is an Amazon Alexa, I didn’t think she would be able to use it but she can. She can’t reliably work the radio or tv but she can ask Alexa to play Frank Sinatra or the Beatles or the news. We also put prompts on it to water the plants or have a drink.
Good luck x

Wow, I'm so touched by how many people have replied and given so much really really useful help. I'm collating all of this tonight so that we have a plan of action at the weekend - this gives me plenty I can do in advance.

I'm sorry you've all been through this. It sounds - well I'm getting nervous, but I keep telling myself forewarned is forearmed and as much as I can get sorted now will help later on. The combination of personal experience and online resources is just so helpful. Really really grateful for everything written here.

Good luck @Norrisville > Forewarned is definitely forearmed, as much as we'd rather know about this stuff 😔

NOT know about this stuff 😐

Something for the future maybe, doll therapy is a thing and for some dementia patients it can be life changing. My late grandmother was very depressed and confused - very focused on going 'home' (to her childhood home which no longer exists) someone in the care home she lived in gave her a doll to care for and it transformed her life. She was useful again, she had a purpose, someone to love and care for. She died with me holding her hand, and her 'baby' tucked in beside her.