Ongoing concerns

[Southcoastjgh]

Hi,

I posted last year about our mum and things have got worse.

Other more distant family and friends are now expressing serious concerns and all fairly certain it's a form of Alz/Dementia.

We (her children) have spoken to her about it a couple of times after incidents have happened, but she just shuts us down and then won't have any contact for a while.

We have now spoken to my step-dad who admitted Alz/Dementia is happening, he is basically doing most things for her every day and keeping her in a strict routine, but that he doesn't need any help or a diagnosis and that they are going to live on a canal boat for the next two years and rent the house out (I've read Prunella Scales did this with her husband and she has had a mild form of Alz for 2 decades, not sure it's the same with my mum who seems to rapidly have gone downhill over the past 3 years).

As her children it would be good to have advice on whether we are doing the right thing;

- Forcing the issue with trying to get a diagnosis is making them unhappy. From our point of view it is about getting her into the system and getting him some assistance in caring when it gets to that point. Are we doing the right thing?
-Our mum is only 67, so it almost feels like by taking themselves hours away across the country this is going to expedite the process of forgetting us and her grandchildren? Again, should we just accept that this is what they are doing or talk to them about it expressing concerns e.g. Is being on a canal boat necessarily the right environment?
-She is still driving (on occasion) and he is saying she is fine to (although 99% of journeys he is driving).....but watching her drive away is pretty mental. I also dread to think of her driving behind my wife and kids.

Another issue is if our stepdad is ill at all or anything worse, she wouldn't have her sole carer anyway? We have offered to help, we all live close by (although she cancels most arrangements now, due to whatever minor stress has become an obsession that week e.g. recently her mobile being broken escalated into both of there phones and laptops being completely broken.....on clarification with him it was just her phone she had forgotten the pin number to and she basically couldn't function for about 2 weeks whilst this was happening).
I'm only early 30's, I didn't figure on not having much of a mum anymore at this age so it is hard to get your head round. The bottom line is we want her to be the happiest/healthiest she can be for as long as she can be, to be safe and to see her.

Any advice greatly appreciated.

 

[canary]

Hello @Southcoastjgh
Im afraid that you are in a difficult position. My OH is 62 and we have children who are 29 and 32, so I understand where you are coming from. Unfortunately, your step-dad is in denial and as he is your mums main carer you wont be able to change things on your own. Social Services can assess them, but if your mum and step-dad refuse help then Social Services will not insist. BTW, Im sure that the idea of living on a canal boat is pie in the sky. I would be amazed if your step-dad would be able to implement it. So dont worry.

What you can do is write a letter to your mums GP outlining your concerns. The GP wont be able to discuss this with you, but the letter will go into her records and when she goes to the GP next time it will be there. The GP might also arrange for a "well woman" appointment for her.

You can also go and check out the local care homes, so that when the inevitable crisis happens, you know which ones you would prefer.

 

[Southcoastjgh]

Thanks for the reply. They are actually looking at Canal boats now....so it appears to be happening, but your right it might just be a fad which isn't followed up. We were only just told about that, so we are worried that the idea has been sped up to stop us trying to get them to get a diagnosis....it's hard to know when it has become a taboo subject with no communication, aside from between myself and my bro/sis.

We've spoken to her GP before by phone, but they weren't that helpful. Have arranged to actually chat with them in a few weeks face 2 face, which all seems a bit cloak and dagger, but the bottom line is the GP needs to understand the bigger picture to really know what is going on.