I guess I'm doing anticipatory grieving

[BeaTwix]

Many you will know my back story. I care for an elderly relative at a distance. They aren't my parent and will henceforth be known as EPICF (Elderly Person I Care For).

They are an outwardly sociable and pleasant person so wide circle of friends/ popular with carers etc. Underneath this all is lifelong poor executive functioning and hoarding. The house is neglected and full of stuff. Finances a mess etc. They are declining cognitively but are bright (first in family to go to University etc.) so masks it really well.

EPICF is now in a nursing home. They aren't that happy about it but the family assessment is there isn't capacity to decide for themselves as they just reject any reminders about serious safety issues at home (mini kitchen fire due to forgetfulness) as lies.

I've had to do a massive renovation on the house after a minor issue caused huge damage due to previous neglect.

The house now looks amazing and EPICF would have loved it I think. It would also make it a much more pleasant place to gather as a family. Sadly EPICF is now too incapacitated to enjoy it safely and the next step is to clear out the remaining horde and get the house on the market.

The whole situation is making me so sad. Sad for the person I care for, sad about the way the person I care for demonstrates no care for me/ my efforts, sad they won't get to enjoy their now lovely house, sad that we have to sell what is a lovely property with lots of lovely features. Hey ho. Onwards and upwards just let me allow a little.

I'm sure lots of others on this board have dealt with similar feelings.

Hi BeaTwix. I have seen some of your previous posts and empathise.
Often along this journey we are grieving, for them, for us and for what could have been. I don’t know that you can do much about it, but recognise these are legitimate feelings and it is ok to feel this anticipatory grief, sometimes mixed with anger and despair. Acknowledging it has made it a little easier to accept, IMHO.

You've done very well to achieve this situation which is a situation which is safe for your relative and the property which is no longer a fire risk to anyone.

@BeaTwix I remember your previous posts. Firstly your EPICF is somewhere that can meet their needs, even if it is not what they want. You are on such a good path acknowledging’anticipatory grief’. In some ways many people such as your EPICF go through life giving the impression that are very competent but they are not. When the Chris happens people like you and many of us on here have then to face the reality of hoarding, I have always known my mother had a problem; inability to cope with day to day issues such as intervention by HCP suggesting getting help. Keep talking on here you know how helpful this board can be. It is a lifeline at times.

There is so much sadness along this path. It’s not surprising that you are feeling it strongly at this point. It’s so hard to have to make huge decisions for another person when you know it’s not a situation that any of you would choose.

But you have done something so amazing here. You’ve done what had to be done, rather than leaving it for someone else to do. Just a round of applause from me. 💐

Totally get it. Have followed your posts and know the history. Am also finding it hard to make decisions for someone who wouldn't want these decisions to be taken, nor would they make them themselves.

It took my counsellor to point out that now the crisis was past the stuff I was struggling with was anticipatory and actual grief. Grief for the things that could have been, anticipatory grief for the things to come.

💐

And today we got the dementia diagnosis.

epicf is gutted. I’m relieved I now have some protection against criticism about decisions I’ve made from outsiders who don’t see the difficulties.

Sending you hugs.

Weirdly, after the initial relief at diagnosis I found I felt worse for a while. Like I had been hollowed out. Not sure if it was because of all the gaslighting that had been going on, or whether it was some of the accumulated exhaustion kicking in. Or even, if after all that fighting it was just such an anti-climax knowing you were right all along.

Don't be surprised if you feel the same thing.

You have done amazing
cant believe people would criticise you (let them walk a mile in your shoes)

I recently saw someone soon after their dementia diagnosis and it was devastating for that person. They definitely seemed to get worse afterwards, I think in that case they had still been fighting hard to hold on to their abilities and they gave up a bit more afterwards perhaps. But yes, at least their wife had some underpinning for what she’d been through and the decisions she’d made.

I look back now to when my aunt ‘put my grandmother in a home’ (early 90s) and I blush for my lack of understanding of what was going on and what my aunt had dealt with.