Mum has just been diagnosed

[sailsnapper]

Hi all,

Looking for some advice. My mum has recently been diagnosed with Alzheimer's, my dad is her carer. I live over 100 miles away, though thankfully my brother is only 20 mins away, though has a young family (like I do).

We actually think we're 2 years down the line (as such) as we started noticing changes in my mum around that time, it's just taken so long and a lot of perseverance from my dad with the medical team. She has started taking medication, which is due to increase shortly and we have seen some improvements, certainly around normal daily routine.

So:
1) my mum is in denial - she won't tell anyone - she is also very emotional, so obviously does recognise there is a problem.
2) she takes the dog for a walk daily (on her own) though we are concerned about her wandering off - she went for a much longer walk than normal the other day and really worried my dad. Ant advice/suggestions on trackers for peace of mind for my dad if nothing else? Ideally my dad would go with her but he doesn't really like walking (which I find frustarting as it would be so good for him!) and I think he sees it as a break time
3) my dad is getting a break at the moment an hour a day by going swimming and mum is okay at home along atm
4) I've looked an memory clinics/meeting sessions - but how do I get them to go. Neither are receptive and they know lots of people at the local one, so neither want to go as they don't want the news spreading (which I can understand as they live in a small community where news spreads). I was thinking of the getting another of the local clinics to invite. Anyone have any experience of this?
5) mum is also down in dad as he makes all the decisions and makes sure they go out somewhere everyday - which is great. I'm just concerned there circle of friends is very small and getting smaller as they withdraw further. my dad isn't the most socialable person as it is.

I spent the weekend with them sorting poas and being clear what both of them wanted when the time comes. They had an appointment at their solicitors on Monday as they both wanted to redo their wills (20 years old) but my mum went for a walk, forgot and didn't get home in time - which upset my dad. I'd really like to approach the discussion of what happens when it does get too much for dad and mum needs professional care, but think that's a bit to much at the moment (ideally they'd go and look at some care homes and agree where mum would like to go and dad would be comfortable with).

Any advice suggestions welcome, kind of alot of emotions. I'm trying to do the practical stuff first but how I help them both continue with life and make it easier is important to me. My bro is seeing them weekly so least keeping on eye on them both when I don't see them that often.

Thanks

 

[Grannie G]

Hello sailsnapper

It`s OK to think ahead but I would try not to be too specific about things because no one will be able to predict the rate of progression of your mother`s dementia .

Please try not to put pressure on your mother to accept her diagnosis. The condition itself may make logical thinking very difficult for many people.

It might help you to check out the following links.

https://www.alzheimers.org.uk/downl...mers_disease_understanding_your_diagnosis.pdf

https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired

I hope you will find Talking Point supportive.

 

[Beate]

You could ask your local council about trackers - we got one free of charge through telecare.

If I was you, I would tackle practical stuff first - get lasting power of attorney both for finances and health arranged, then look into Attendance Allowance and council tax exemption. Wills are also important, and while you don't need a solicitor for LPA, if you need to see one for the wills anyway, ask what his charges are for that.

 

[LadyA]

Beate is right. practicalities first. And a tracker is vital, if your mum is going out walking on her own. Does she always take the dog with her? Because if so, you could as a double safeguard, also put a tracker device on the dog's collar? Explain it to your parents that it's so that if the dog got lost, you'd be able to find him quickly. That way, if your mum ever went out without whatever her tracker was in, handbag, mobile phone etc., you'd still be able to track the dog!

As regards them not wanting people to know. My husband's family didn't really want people to know either. As time went on, however, I did need to tell an increasing number of people, as his behaviour became increasingly bizarre. I found he had written seriously abusive emails to a few people accusing them of outrageous and ridiculous things, and had to write to them myself apologising and explaining about his illness. They were all very understanding, and had realised that as each of them put it "There was something along that line wrong." There's no need for a grand announcement. Over time, I would explain to people on a "need to know" basis.

 

[john51]

I wonder if your mum uses a smartphone?
If so and she would use a tracker would she accept a tracker app on her phone. There are expensive ones sold to track people with Dementia. I swallowed my pride though and use one called kid control which is free. It gives my wife peace of mind when I go out.

Sent from my SM-A310F using Talking Point mobile app

 

[john51]

I wonder if your mum would be up to volunteering? Could that give your dad a break?

Sent from my SM-A310F using Talking Point mobile app

 

[GeorgiaL]

Two years from onset to diagnosis is very standard. I know. Don't force her into anything they don't want to do. do what mum wants. If she is seeming depressed she may need medication for this. Depression can be common but the anti dementia drugs also can lift spirits so wait for them to settle first. Just try and be life as normal with her. But start getting into clear weekly routines now. Get a board with Monday AM PM and Tuesday AM PM.
Each weekday is a different activity and it stays like that so she has routine and certainty about what's happening. Although she may soon not keep up with what day it is but she can ask and then look on the board for what's in store for the day. If you have a calander need to cross of each day so she knows where you are up to. So many people have these and the person with dementia has no idea which day or month it even is. Good luck