Cockroach cafe - summer

@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.

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?

@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.

@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.

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

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.

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.

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.

@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.

Sending handholds @GnomeDePlume

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.

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?

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. 😑

@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 🍸

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 .

You'd hope turning up to the memory clinic on the wrong day/wrong location would set some alarm bells ringing? 🤔

@GnomeDePlume - stability is all you can ask for at this point.x

I’m so sorry @GnomeDePlume my dad passed two weeks ago and he had a rally in the two weeks before the end. In his case it only gave him days but we were told at the time to expect weeks. I found the changes and uncertainty very stressful. I hope your mum is kept comfortable, quiet distress is still distress. 💐In dads case, the palliative care team were excellent at ensuring he had the right pain relief.

I’m sorry, @GnomeDePlume. That’s such a shame. It’s unkind all round to prolong the experience, imo. Is he there, seeing it?
Does one or other of you have the PoA? No one did, with Dad. Mum was after aggressive treatment long after he should have been slipping quietly away.

That’s an excellent start, @MittensTheKittens. We have a tip shop, raising money for charity with items too good for the tip. We took half a boot load to the tip, and came home with- I kid you not- a desk chair, a kitchen bin and a ceramic sink.

The endless medical appointments are proving tricky. We don’t have health and wellbeing LPA applied for yet. I might ask her to check I’m registered at her GP, it would be at least one thing I could check for her. She’s begun going to the place for appointment A at the time of appointment B. And there are appointments for her memory, her blood pressure, her hearing, her eyes, her shoulder…