Your tips: caring from a distance when someone is refusing help

[HarrietD]

Every issue our magazine includes real-life experiences, and they'd like to hear from you.

Do you have advice for someone who’s struggling to support a person with dementia, who lives far away and refuses their help?

Perhaps it’s a friend who’s unsure about their role, but wants to make sure they keep in touch so the person isn’t isolated?

Maybe it’s a relative who wants to help with finding and arranging any support or services that the person needs?

Or someone might feel frustrated at not being able to offer more practical, day-to-day support because they’re too far away?

Please post below or email magazine@alzheimers.org.uk before 5 January.

Thanks everyone

 

[SherwoodSue]

Hello.

I don’t live with mum. I DO several FaceTimes a day, prompt each meal… you have XYZ in the fridge/ freezer. (I put them there)
Encourage fluids and breathing exercises. We do pulse ox and BP via the camera.
Alexa prompts drinks also
I have NEST camera for emergencies
Some carers do come in for balance problems at shower times , started with a cleaner.
I do medical appointments accompaniments
I also respond to falls alarm.
Not everything can be done at distance
I do suffer mums scorn as she can’t always see my help is needed Having said that any mention of going on holiday induces panic.
Latest addition is the City Council delivering and collecting boxes of book for mum to look at even tho the plot is soon forgotten

 

[Toopie28]

I care from overseas. I'm in US and she in UK.
Managed to take care of her for nearly 3 years.
My main objective was to keep her at home until she went wandering or needed bathroom help.
However it's been extremely difficult - mostly due to the people around me (in UK)
I had a major medical situation several months ago and now realise that I must put Ma in a care home so I have failed her.

It started slowly.
2 cameras.
Phone calls every couple of days.
Then went onto phone call every day. More camera's in all areas.
Then Alexa. Logging on every night for several hours to "put her to bed".
Then accompaniment to and from church.
Almost like an FBI stakeout with all the camera's I have but able to see every inch of the house.
Ma-proofed the place by only keeping what is necessary including food and drink.
Monitor from afar so when she gets up to go to bathroom, I track her until she comes back to bed (in case of falls)
Doesn't go out alone. (I'll catch her if she tries)
Blames me for taking away her independence.
Every moment of every day is consumed with trying to keep her safe and at home.
Tried private care and they are a nightmare.
Had to recruit my own "helpers" that are completely undependable and contact me in the middle of the night to say they can't make it.
No family help.
"Friends" that say they will help and never do or mess everything up that's in place.
Organise all appointments and eating and days out from halfway across the world meaning a lot of sleep deprivations but... oh well.

I suppose the plus side is I've started a online business advising others how to care from afar... until you can't any more.

 

[HarrietD]

Thanks so much @SherwoodSue and @Toopie28 for being open about your experiences. I'm very sorry to read that things have been so tough for both of you, but appreciate you sharing.

If anyone else would like to share their experiences of long-distance caring when someone is refusing help, please feel free.

 

[Sporadic gardener]

I started a thread on this. Glad you are doing an article on this. There is axreal gap in advice on this https://forum.alzheimers.org.uk/threads/caring-from-a-distance.138461/

 

[Sporadic gardener]

Since writing these I have managed to liaise with the GP and pharmacy to simplify how many times a day she takes meds (to mornings only) as she was forgetting evening meds. The pharmacy provide dosette boxes and deliver weekly so that we can keep a rough eye on compliance. That took months to set up.

The home help from Extra Help has been a godsend. She deals with shopping,laundry, cleaning and bed clothes changing ad has occasionally tried to help with other issues - even kindly leant cash as my PWD had blocked her card pins yet again. Beyond the call of duty.

Banks really are not set up to help people caring from a distance. Internet banking and apps are not set up to enable managing an accoint/ card pins from a distance. It is a repeated problem that my pwd forgets the pin the card gets blocked. She can unblock if she calls but these days she can't manage that so a month or so later we find out she has no access to funds. Then we request pin reminder but she needs to go to a major bank atm to unblock which a) she can't remember b) can't operate c) can't get to because of mobility issues. Her local branch has shut. Staff on phone lines can't compute this issue. So friends or family have to travel long distance to unblock the pin until she forgets again. Her bank doesn't do chip and signature and all banks have different rules for LPA access and accessibility and their staff hive incorrect information over the phone. It is infuriating as all it needs is for the bank app to allow control of her debit card if you have LPA .

All advice is designed for carers who live nearby but there are so many of us long distance. With early stage dementia digital banking and internet should make it possible to help a lot but services don't understand denial and don't set up tools to allow help from a distance. There are good reasons for this - protecting pwd from exploitation- but it can also result in reducing their independence as they can't access funds.

 

[chickenlady]

Mum's a 4 hour drive away but siblings are closer. She's started going out and getting lost, losing her keys and handbag and regularly locks herself out. A keysafe holds a spare key and we've had to give the code to complete strangers who've found her and brought her back home. She refuses to go in to care and we're working with social services to get her in for her own safety but it's slow. She used to manage microwave meals very well, straight from freezer to microwave to plate but she's now convinced that the fridge heats things. We stock her fridge with food that is already cooked and can be eaten hot or cold. She keeps putting tea bags in her kettle and regularly destroys the element so we've bought a see through kettle, at least that way carers can spot what she's doing. She can't be bothered to wash and often goes days without getting undressed, the smell is dreadful but she gets extremely annoyed if anyone suggests a bath or shower, let alone doing some clothes washing.

 

[alliec]

My mum has Alzeihmers Dementia and dad dementia but very deaf,we are over an hour away an,mum went into hosptial 2020 she declined after being on lots of meds,she has been in twice since 2020 and each time dad can't talk to the hospital as he thinks people are winding him up,so i dealt with that,since social coming out for mum to have care which she declined,an old school freind who had seen dad,after a stroke offer to pop in each day,to see if they are ok and needed any help,they do not want other people in their house and this took along time for my dad to trust her and for mum,to actually appreciate her,as my friend can talk to her and hear her,my mother shouts and shouts at my dad,we go down every 2 weeks,clean,through food things,hoover etc,i do online shopping for them and grab anything on the way down,the word i would say is my mother has Denial,i have never been right in my life,we had a group discussion with them about having showers and mum,seems to finally think that maybe this is a good idea,but whether it happens,i live in hope

 

[Pixibel]

So sorry to hear your worry about your parents.
Both mine refused any help which caused such anguish.
Mum had Lewis bodies dementia and Dad had alzeimers and ocd personality.
It made life really tough. I had to travel from London to edge of Cumbria every week, then stay at old friends to be near them. Put my life on hold for 4 years until the inevitable.
Mum had serious falls and incontinence. They refused to have downstairs toilet and shower, and no carers. It was weeks before a place in a care home was available.
Totally unsuitable for my mum.
There is such a shortage of places in good nursing facilities. I’m sorry, but it would be wise to check out the best plan through your parents GP. Get as much support in place and a plan. They may not want it but it will be inevitable. It will happen I’m afraid. Best to be prepared.

 

[HarrietD]

A big thank you to everyone who has contributed so far

Just a reminder that this thread will be closed at the end of tomorrow, if anyone still wants to share their experiences on caring from a distance when someone is refusing help.

 

[HarrietD]

Thanks again everyone - this thread is now closed.