Ideas/advice on taking pressure off dad (main caregiver)

[WilliamHarrison]

Hello

In a nutshell my mum (68) definitely has dementia or something, and according to my dad she has already had a memory test but it did not return positive with dementia/alzheimers. This is not totally clear - my mum might have been told over the phone the true results without us knowing. I'm not sure what the next steps are in terms of figuring out what's wrong so that we can find help for her and my dad.

Here's the full story:

She's has been having memory problems and behavioural changes for a good few years now. It was only about 6 months ago me and my siblings all agreed that there is something definitely up, and it's most likely dementia or alzheimers (some of my sibling have already cared for people with alzheimers.)

She can forget things that have happened minutes ago. She has a lot of trouble with time and stresses a lot about deliveries as 'she has to be at home in time', often meaning she'll cut a walk short if a delivery is within a few hours. She repeats the same stories and questions often, sometimes several times a day.

Her father and brother had alzheimer's so it's definitely in the family.

She is not so far gone as to not realise if we bring in a carer so we're looking at bringing in a carer disguised as a cleaner. My dad desperately needs a break from her - she calls for him every few minutes and is very demanding of him (she won't take her questions/demands to the rest of us for some reason.) This is probably the most urgent thing as my dad is so depleted that he has talked about running away from home (he finds it impossible to put in boundaries and would rather run away.)

We have already got power of attourney and all the legal stuff taken care of.

I kind of feel stuck as to how to manage taking the pressure off my dad and getting a diagnosis. Can anyone relate/does anyone have any suggestions?

 

[canary]

Hello @WilliamHarrison and welcome to DTP

Ive definitely had problems with doctors phoning OH and telling him things that just dont get passed on. Usually he wont even tell me that they have phoned and if I have heard the phone and press him it becomes obvious that he cannot remember what has been said. Previous to that he used to tell me a whole load of untrue stuff and it caused no end of problems.

As you have got POA I would be inclined to use it to find out what is going on. Book an appointment with the doctor yourself, say that you have POA and explain all the problems. See if you can find out where she is in the diagnosis process. Usually a diagnosis requires a referral to the memory clinic and a scan, but this may have been put of hold due to the pandemic.

 

[Sarasa]

I had the same thing with my mother, @WilliamHarrison . Not only wouldn't she go for a memory clinic appointment, when she did things such as phone the police saying the neighbours had stolen her false teeth, she didn't tell me about the subsequent phone call from social services. @canary's idea is a good one. Even if the GP is loathe to give you too much detail if he realises that nothing has moved forward because your mother has forgotten phone calls/hidden letters etc he might be able to get the process restarted and ensure copies of anything are sent to you or one of your siblings instead.
When this lockdown is over and Care Homes are open again you could look at seeing if your mum could have a week or two respite to give your dad a break. You could sell it as a holiday while your dad is having to do something she wouldn't like.
BTW what would happen if your father left her on her own for a day or a weekend? Could she cope.

 

[Splashing About]

I could have written your post 18 months ago. Unless your dad will accept help it will be a struggle. Often the help has barriers, either financial or a period of adjustment and a carer stressed to the max can’t deal with extra stress so turns it down.
I waited for little moments when he was receptive to ideas for help: daycare, carers and discussed homes.

in the end it took crises to bring everything about. In the meantime I ramped up my visiting and asked family to phone more (varying success with that)
Those 18 months were very hard