What little things do you do to keep your sanity?

[EveningSherry]

My DM has been in decline for the last couple of years. Things have escalated recently. I think it is the beginning of the end. Reading online, this could still be a couple of years, but very difficult to say. I have young DC and I'm finding this moment in life incredibly difficult. I wouldn't even say I'm that close to DM, but as the only family, the weight of responsibility is really getting to me. I hate all the calls, ambulance dashes, unknown prognosis and hospital visits. I'm usually a strong person - practical and stoic. However, my anxiety is currently through the roof. I dread the phone going, feel sick every time I visit her and she looks worse. I've got a constant knot in my stomach and just feel like I'm going through the motions of life. So, I'm looking for things anyone does to keep themselves going? I'm binge-watching comfort shows and trying to get out into fresh air more, but any ideas of how to live in the present and not be constantly worried would be much appreciated.

It’s so very hard
Where is she living? For me things got a lot better after my mum moved into a care home. Knowing there were other people to worry about the day to day stuff. Mum was much less anxious herself as well.

Meditation helps

I’d also recommend maybe some counselling if you can. Is there a carers service near to you? It’s like a long slow grief but without the closure of death.

She is at home with carers. She's not keen on a care home, but we have looked at extra care housing. However, after this latest escalation I'm not sure a big move is a good idea. We're waiting for an appointment that may give a better idea of prognosis. That will dictate whether a big move at this stage is worth it. Yes, I was hoping for a quiet slip away, rather than years of drawn out illness.

I found getting some control over the situation really helped as it stopped me feeling so anxious.

So, yes, there will be phone calls, but you can control when you receive them by switching your phone off or using the Do Not Disturb setting. And rather than reacting immediately to everything, allocating some time for dealing with the admin, follow ups etc. That stopped it all getting in the way of my family and work life.

I would recommend looking at extra care housing as it will take a weight off you if you know she is in a safe place and being monitored.

I have posted on another thread but my DM moved a few years ago into this sort of facility and it’s made all the difference as she is now future proofed to some extent from her declining health and mobility - ie she could get a lot worse now without having to move again.

IME it is worth doing this sort of move before there is a crisis if possible as my DM says it has hugely enhanced her quality of life despite her frailty now being much worse than it was when she first moved.

I think most people would prefer to go quickly but long slow decline over many years is unfortunately the norm in my family.

She has asked me to arrange estate agents to look at the house, so will do that as a first step. It is just tricky at the moment, as I really can't tell if she will last a few months or years. Hopefully the next consultant appointment will give us more clarity to make a plan. It is the unknowns I find so hard to deal with.

Physically what is wrong with her? Does she have weak bones etc, are there frequent falls, or are there underlying illnesses?

I can only advise that my mum took 3 falls in 12 months in an extra care setting that was meant to be 'safer'.

You are right that it is a lot of upheaval for such an old person so you need to be fairly confident that she will stay there for a reasonable time - most don't cater for incontinence or more advanced dementia for instance. Otherwise, it might be best to try to make her home as safe as possible with a view to the next move being a care home. They cost the bloody earth but the pressure definitely eases off (though if your mum has frequent hospital admissions, they will still expect you to do all the running).

I do sympathise, a long decline is horrible

Thanks everyone. She walks with a walker. She has underlying chronic conditions that are making her weaker. I've decided I need distraction, so less time sitting and dwelling and more time with my DC, friends and finding some hobbies to work on. She's had enough and I wish she didn't have to go through this, but it will end eventually and we just need to manage it as well as we can.

Can I add some things I've found helpful to keep me sane?
1 chocolate and cake.
2 warm baths with no phone and epsom salts
3 African Jazz on Spotify in the car (ten ten special is a brilliant track)
4 saying no to things that interrupt the possibility of no's 1 and 2 at least twice a week.

Good luck.x

Oh and The Diplomat on Netflix (Kerri Russel and Alison Janey - brilliant cast and show)

I think you need to work out if you’re able and willing to arrange a move for her to extra care housing (where she will still require a lot from you) and then possibly to care home when her needs are no longer being met ? Or is it better to miss this move and for her to go into a care home. You don’t have to facilitate an extra move as that’s an incredible amount of work plus all the usual stuff you are doing for her.