Cockroach cafe - summer

[GnomeDePlume]

A new thread.

This is a place where anyone dealing with elderly parents/relatives/friends can rant, vent, scream into the void.

There is no judgement just understanding, support and good advice.

DB believes that DM should be kept alive and unmedicated for as long as possible. He doesnt see her quiet distress as being something which can and should be medicated.

I have pointed out to him that neither DM or DF would have wanted this for themselves or each over. This doesnt matter to DB.

I think the care teams at the CH are a bit frightened of DB. He is an arrogant arse who can be outstandingly rude. They are frightened he will make complaints. What they dont realise that it's all just wind. He makes a lot of noise but never does anything.

Does your brother even like his mother ? It is cruel to leave anyone in distress and more so when they could be hearing the end .

@Houseplantqueen I’m sorry for your loss, I hope the rally meant you could say goodbye to your Dad, the uncertainty is just awful 💐

@GnomeDePlume I’m sorry for the position your DB is putting you in - I was very aware of the ‘you won’t complain, will you?’ subtext of interactions with GP and nursing home in the last few weeks with our Dad. I am not a doctor and it was very hard to know what to do, MN was amazingly helpful.

This cafe has quiet times but it never closes, so you can grab some strength any day at any hour 🍸

That's an interesting question. I was wondering today if DB is in some weird way punishing DM. What for I dont know, no longer being able to treat him as the golden child perhaps.

DB doesnt see DM's distress as being real, something which should be medicated.

I hate how this is all making me feel. I now want DM to die. She isnt alive now, it's just a ghastly existence.

As if everything you've been through @GnomeDePlume hasn't been bad enough, your DB acting weird is the last thing you need to be thinking of/dealing with.

It never ceases to amaze me how some men put themselves first and foremost, no matter what the situation might be. Tediously selfish. 😑

Some people don’t see others as ‘real’. They are bit players, supporting cast. Their needs secondary to the needs of the main character’s plot.

@GnomeDePlume could you speak to whoever is making the decisions. Point out that they are letting your brother bully them and his mum, by prioritising his opinions. That they know and you know your mum should not be suffering because of his blustering ways. And ask to see where and how they are documenting these decisions.

I’m not a medic, but surely they are documenting them?

So sorry you are going through this @GnomeDePlume. I felt the same way for my mum when she was still hanging on toward the end. I just wanted it to be over for both her and me. Like your DB, my DF was negative about mum being medicated, but said it was because he wanted her to communicate with him, rather than being 'out of it'. Fortunately, I had POA and he didn't and the CH staff listened to me. I think my DF and your DB are selfish, TBH. And I think there's an element of misogyny (our DMs are there to meet the needs of the men, rather than people in their own right), but i could be overthinking there. for you. It's a horrible time.

Sending handholds @GnomeDePlume

@GnomeDePlume the guilt about wanting it to be over is tough to carry too.
Siblings aren't always the support wer expect them to be - my thoughts are with you.

Well I arrived a DPs last night after a days travel. House looks ok. Garden is jungle like. Was always Dads pride and joy.
DF has depression but I have suspected dementia for some time.
DM is recovering from intense radiotherapy and a Head and neck cancer. Aggressive.
Today I have found out that

1. DFs term insurance has expired. Not the biggest deal but getting him to call was painful. 2. I have access to his NHS app that he doesn’t look at. He had a CT scan a few weeks back and the results are on his App. It’s says the scan had an imaging appearance suggestive of dementia. The GP is on holiday for 2 weeks. He had the scan 16th June. DPs have been waiting to hear about the scan.

Will DF be automatically sent on to the memory clinic now? Tonight we are starting to sign his LPA for finance and housing. Health and welfare already done. In the nick of time I think.

I haven’t visited the café for a long time but got support on the odd occasion I did. I’ve lurked plenty.

My mum passed away 10 days ago, I’m trying to do paperwork etc from a distance. I was consumed with guilt when she died as I haven’t been as present as I should have been, being a lone parent 200 miles away I have prioritised my work and my child. I did see her 2 days before she died and spent time with her. She had clearly made the decision she was going (advanced dementia) I got to say goodbye and she even kissed my hand.

Then I took my daughter on the post exam trip that I booked a year ago as a reward for her hard work.

Coming home people are so sympathetic but I don’t know what I feel. Relief first and some anger now. Going through paperwork here I’ve found notes and paperwork for stuff that I did for years to try to help her but she blocked me and shut me down at every turn. So I’m starting to feel less guilty that I realise I genuinely did try to help but she was having none of it.

Sorry for your loss @OhamIreally. Dementia is such a horrible disease as it effectively takes our DP away twice - once in mind and then finally once in body, and it sounds like you did everything you could for your DM. Be kind to yourself and do come here for comfort.

So sorry @OhamIreally You clearly loved your DM. But it’s right to put your child first. Agree with everything @rookiemere writes.

@OhamIreally It's never easy and no matter what you do guilt is always there. Take care of yourself and your dd - you did what you could.

@OhamIreally 💐grief is complicated. So many different feelings swirling around. But all of them are normal. Be kind to yourself.

DM is now back on morphine an medazolam. A different nurse was on yesterday, the nurse who had put DM on them in the first place. DB of course not happy.

DB, I think, doesnt understand dementia. He still seems to see it as a kind of locked-in syndrome. That DM is still there, just being masked by dementia symptoms. DM has late stage Vascular Dementia. Her brain is dying.

I cant help him, he doesnt listen to me or any of DM's care team. Any opinion which differs from his own is dismissed as being wrong. For a highly educated man he is remarkably poor at facing facts.

@OhamIreally its odd isn’t it, we sort of sink into guilt about not having solved whatever the problems are and returned them to ‘normal’ life or the life they had before or someone else is having.

Then you see those old attempts and remember all the ways you tried, all the supports and structures you set up, which didn’t work. It’s not about a calendar or an easier filing system or grocery deliveries. I am starting to accept that it’s irreversible.

I do think the world has changed, shutting out older people. I just sent LPA off. Another poster here posted hers last autumn and found it took 6 months from posting for it to come through.

@GnomeDePlume I’m pleased she’s better medicated now.
I wonder if this nurse can leave a note in her records that her meds aren’t to be changed?

@PrizedPickledPopcorn I knew even as I was doing it that a lot of the adaptations were hopeless.For example a large beeping wall clock to remind DF to do his daily insulin, as DM was screaming at me she was so worried he wasn’t taking it, but neither of them wanted to pay for daily care to do it, because they weren’t at that stage yet. It turned out they were many, many stages further than that but it took all of us a long time to realise that.
In the end it felt very much to me like that Greek man continually pushing the rock up the mountain only for it to fall down every time he reached the summit (Sisyphus ? ). A lot of the time I think I was doing things so I could demonstrate I tried my best when it was painfully clear what the inevitable outcome was going to be. I wonder if I could or should have forced it earlier, but they are in the home now and I am trying to let go of my bitterness and anger. It wasn’t their fault as they both have forms of dementia.

@PrizedPickledPopcorn there does seem to be an irony in the fact that just at the point a person needs support most they can access it least.

My GP surgery doesnt deal with face to face enquiries except under protest. Everything is supposed to go via different web pages/apps which look and feel different and of course have different log ins.

If I was cynical I would say it was deliberate.

@rookiemere the constant solving of yesterday's problems. We did so much of that with DM.

In a way it’s a bit like parenting toddlers. But ones that decline rather than becoming more capable and learning from their mistakes. The horrible thing was the more I did (and DH) , the more they expected and the less likely social services would step in and do anything.

Maybe it’s more like parenting teenagers where they have to feel the weight of their decisions. But not ones you could have rational conversations with.

A poster on another thread described it as:

fast moving problems with slow moving people

Which I rather liked!

“fast moving problems with slow moving people”
I like it. Along with ‘yesterday's problems’!

My situation may be unusual in that DM is too fast moving for her own good! And ours!

She has businesses, her personal affairs and an active social life. She’s a control freak. Last time we spoke she was talking about buying a new car 😱
She alternates between being vulnerable and out of her depth, and furiously doing things that undo what we’ve just accomplished or add new things to the list to sort out.

Shes also inclined to get advice from 5 different people, each of us thinking we’re the only one involved, spending hours researching stuff, only for her to then do something random because she went in a shop.

And no matter how often I tell myself not to, I keep falling for it!

fast moving problems with slow moving people

Perfect description. In my case the 'slow moving people' applies to my brother too which doesn't help. About a year ago, I suggested looking at a simpler phone for mum and a TV system that would be easier for her to use (the one she has involves going through multiple menu screens to find anything). At the time we assumed the biggest problem was her vision so I was talking to her about options with large buttons and/or voice control etc. Brother claims to know about these things so they were adamant he must deal with this. They have just got her a new phone which of course she can't use because now the problem is not whether she can see the buttons but understanding how to work it. It doesn't matter how simple it is, it is unfamiliar.

I can't help wondering with both of them if there's an element of intentionally putting off doing this sort of thing because until they do, they can tell themselves that it will solve the problem. It's much more palatable to think that you need a new phone/better filing system/bigger diary/new glasses etc than to accept that nothing will make any difference and there are more and more things that you simply can't do for yourself now.