What’s the point in knowing?

[Loulou560]

Hi there
I’m very worried about my DF- 78. My DM passed away 2 years ago so he lives alone. Thankfully my brother and I are both local. His memory’s been getting worse and worse over the last few years. He relies on us to sort out his finances. He repeats himself, his organisational skills are awful and can’t remember close family member’s names etc. He manages ok in the house (has some mobility issues) doing the basics. I am absolutely terrified of the future for him.
I feel very bloody angry about everything at the moment. I’m 42 and I’ve got a baby and a toddler, and I feel bitter that he can’t do much with them, and worry about how long he’ll know who they are. Im still struggling to come to terms with the fact that my mother never lived to see my children, and now Dad is like this.
I’ve done a lot of research about dementia causes, and I’m very sceptical of the drug industry. I feel like being given a label for something which there is no cure is futile and could make someone depressed. I’m aware that there are medications for certain dementia types that just control symptoms rather than slow the disease itself. I’ve seen family members suffer over the years with this problem, and my uncle who passed with Alzheimer’s when I was 15 left a big mark on me. It seems like treatment isn’t much further forward after all these years.
Am I alone in feeling like this?

Probs not much help, but I'm in a similar position with my DM. My DF died 3 years ago, they were both alcoholics and my mom has just been diagnosed with vascular dementia. She has been sober for over 2 yrs but has still declined massively.

It's not a shock as she's been getting worse with memory and looking after herself for a few years, but I don't think the diagnosis has changed anything. She's had carers for a couple of years but think she'll soon have to go into care as she's really struggling on her own.

I also have 2 young kids, and I have to manage a lot for her, so my sympathies to you. It's so hard!

My DM was given a drug that was supposed to slow the progress of Alzheimer’s. And maybe it would have, but since it only seemed to bring her ‘nasty’ stage back, we stopped it. She went on to 97 anyway.

TBH, I’ve seen far too much of dementia, including very late stage, in 3 relatives, and as far as I’m concerned, if you get it, the sooner you pop off, the better.

If, God forbid, I’m doomed to get it - and could choose - I’d say give me the galloping variety every time - a lot less worry and stress for the family, not to mention the money I hope to leave to dds vanishing in care home fees.

I just left a similar post before I realised there was a whole section on mumsnet about dementia.

I don’t know if it’s worth the fight to get my mum diagnosed. Can’t really see the point and it will upset her.

I also have a baby and toddler and feel the same. Also the rest of my family will be limited help so it’s all on me to keep her safe and I love 2 hours drive away.

Also I feel like people who say you have to get a diagnosis are often blindly trusting of the NHS / pharma industry and just think it’s the done thing. I am healthily skeptical of both.

It's worth getting a diagnosis for when you start needing help - it will give you access to services you are very likely to need in the future. In the work I've done carers found it massively helpful to connect with other people in the same boat, to share experience and information and empathy.

So no, there's no treatment let alone a cure, but knowing can help you plan ahead. There is a huge amount of research being done.

Standard Mumsnet advice - if you haven't already done it get POA in place while you still can.

I take this back actually. I was wrong to pigeonhole people and they probably have good reasons.

If dad has no formal diagnosis then it maybe more difficult and take longer to access social type services such as care in the home or residential care and or funding for these services if

Please don’t blame it on lifestyle where your Mum is concerned because that will make you more resentful. My job involves a lot of contact with people with Dementia and lifestyle prior to diagnosis is irrelevant ,apart from a few people who have the alcoholic related dementia.
My advice is to start looking NOW at care homes rather than waiting for your Mum to become more confused/ distressed.
Then when the time comes you will have done the research.
My advice comes from a very personal level. My MIL has dementia and was still independent until she had a stroke over Easter. I urged the family to start looking but they were in denial as to how bad she was and she recovered really well from the stroke but her dementia nosedived.
Tomorrow she is going into a home but the bloody stress of finding somewhere that would accept her ie mobile and confused has been really awful !

An official diagnosis can help with e.g. claiming Attendance Allowance (which is not means tested) and (one would hope) getting any action
from social services. Also, I used to know someone whose father with undiagnosed dementia, was persuaded to marry his live in carer, who then got him to change his will entirely in her favour - and it was a substantial estate.
The family challenged it in court, but she was very clever and plausible, and she won.
If he’d been officially diagnosed before she took him off and married him (without any of the family being informed first) I dare say the outcome would have been different.
But, just for the sake of knowing you have a horrible disease with no cure, no, I don’t see the point, either.

I’ve done a lot of research about dementia causes, and I’m very sceptical of the drug industry. I feel like being given a label for something which there is no cure is futile and could make someone depressed. I’m aware that there are medications for certain dementia types that just control symptoms rather than slow the disease itself.

The single most important thing you need to know is that everybody who has dementia is different. The progress, day to day living and efffect on a person are different depending on the diagnosis and the person themselves.

There are drugs that delay the progress and these can be effective if started early enough.

My parent was diagnosed with Alzheimers 6 years ago. They have been treated with donepezil. They still know who their close family and friends are.

We were told that making sure their hearing is good (so if they need hearing aids get them now while they can still communicate about the level of hearing in hearing tests and can choose hearing aids they find comfortable), getting exercise and establishing routines all really help delay the accelaration of the disease.

We have really gone all out for this and our parent still has a good quality of life despite the disease being in an advanced stage. They still get pleasure out of lots of aspects of life and still no who we are.

I think it may be different if you are looking at vascular dementia or lewy body or other types

but it definitely isn't the case that there's no point in knowing - because the earlier you know, the more you can do for longer.

If you haven't done it @Loulou560 get a power of attorney for your father for both health and finance while they are still well enough to consent to it.

You can do it yourself . Further info and forms here:

https://www.gov.uk/power-of-attorney

Forms for download
https://www.gov.uk/government/publications/make-a-lasting-power-of-attorney

If you don't do it now, once he loses capacity in order to act for him you will need to make an application to the Court of protection which is slow and expensive.