Support for those who care for elderly parents - drop in as you need, everyone welcome

[CMOTDibbler]

All of us would rather not be here, but we need to be - with the people who really understand.

BBB

I"m so sorry BBB

Bigbluebus, I am so sorry to hear that

Sorry to hear about your Mum Bigbluebus. It is hard for your DB, but I guess the staff were trying to protect his health, in sending him home - as I am sure DM would have wanted.
Thank you for all your replies. I do agree that we have to be our own experts. I had read that kidney failure usually leads to a gentle death, so that is some comfort. The Gp came to visit earlier in the week, and then rang yesterday and spoke to DM and DF wanting to admit DF to hospital. DF refused, as he could not see the point ( what can a hospital do- especially over a week end?). It sounds like he could have gone to stage 5 (complete failure). I think DF has accepted that there is nothing more to be done- its just so hard for DM.
Does any one know if there is a nursing team that supports people in their last days? Macmillan is only for terminal cancer - but I wondered if there is any one to help my DM ( I cannot be there this week end due to a long planned work commitment) I feel very torn.

Bbb I am so sorry.many hugs.
Magg- do you have a local hospice? Thayer are amazing- many offer care at home too.

Hugs BBB. I know it's a cliche but your mum might have been hanging on go on her own.

Having a foot stampy moment. They've lost dads top teeth. Now he hasn't lost them. He isn't able to stand unaided so loosing his teeth just isn't possible.

I assume the bed putting team last night didn't put them in the pot and they've either gone to the laundry or, really annoying and more likely - been swept up with gloves / wipes etc into the yellow waste and noise is going to else arch that are they 😡

He's not eating / drinking much but without teeth how's he supposed to ? And there is no chance of getting anew set made. I can't see him even managing to have the impressions done.

I fed him half a glass of milkshake earlier. We are terrified they'll declare him nursing and want to ship him out but really- needs assisted transfers to a wheelchair , being fed and nappied because he's not toiletted tegularly are still care not nursing ness aren't they ? I can't see anything needing a nurse going on surely ?

And not loosing his teeth is bloody common sense that anyone could manage !

Oh no HelenluvsRob, what a nightmare with the teeth I think everything you've described sounds like care rather than nursing from what I've heard.

Spoken to my Brother again. She's deteriorating daily really when you hear the whole picture, rather than have a photo of a snapshot. There's general consus that she's in pain now and the decision is to pick up morphine tomorrow and start immediately.

Hugs sugar. Pain relief definitely in order

Need to motivate self to go up there and see what's going on today - not easy !

Sitting with dad as he sleeps he keeps stopping breathing for significant pauses. But then again ate some lung and seemed to notice I was here when he stirred.

teeyh found though!

Sugarplum It must be so difficult for you trying to get an accurate picture of what exactly is going on from so far away. It was bad enough when I was only a 2 hour drive away from DM and we were visiting weekly.

Helen- Good news about the teeth being found - although I hope it was LUNCH your DF ate and not LUNG

Helen, glad to hear they found his teeth and that he ate (presume it was lunch, not lung!)

SugarPlum, glad they are going to give her pain relief.

Heehee. Roast chicken lung would be deeply unpleasant !

After sitting listening him to him stopping breathing for 3hrs whilst fast asleep he woke when I said bye and was thinking of trying asandwich with us 2 favourite carers :)

My crochet progressed and back episodes of trapped were watched. One thing about Icelandic tv with subtitles is you don't need the sound on!

Hi guys.

DM's pains are coming closer together & getting worse, though still manageable with oral morphine. She's noticeably more breathless in between. I draw up the morphine into syringes so she can squirt it in her mouth, because she can't manage the screw top bottle & spoon. She used a dose last night but can't remember doing so.

This morning she was extremely breathless after getting dressed but didn't call me, I only found out because I went to check. She still refuses all help with personal care. She can't remember to bring the morphine downstairs/upstairs with her so I keep having to fetch it. And she doesn't want to wear the call button on a lanyard round her neck in the day time.

Had a visit from nephew/grandson today and also managed to Skype with niece/great-grandson. Lots of her favourite foods and a glass of wine. So not all bad but still worrying.

She can't remember any of our conversations about her hospital appointment. Doesn't want to make a decision anyway, wants me to decide. Today I said "I think it would be best if you could have a peaceful death at home" and she agreed. But I think she'd agree whatever I said.

Struggling to decide whether to sleep on an airbed in her room. Maybe not tonight, but soon.

Commiserations to everyone who's having an anxious time

Hugs Auriga

maggiso our area has a palliative care team that deals with end-of-life care for any condition, not just cancer. We've had two visits and they've already helped me a lot, sorting out DM's attendance allowance, expediting a wheelchair, getting me an SOS drug pack, helping to talk Mum round to accepting more care etc. They offer an on-call service as well. The GP made the referral. Hope there will be something similar for you.

Hello all. How are you doing Bbb? Thinking of you.
Much sympathy to those waiting for the inevitable. You are not alone.
Good news about the teeth- and the lung😄.
Here after a lot of doubt we managed to get fil out of his nursing home for his eldest granddaughters' twenty first lunch. He was tired but he made it- and thoroughly enjoyed himself. He was always happiest at the head of a crowded dinner table.

sandwich I'm doing OK at that moment thanks but I think it's because it hasn't really hit me that Mum has gone yet. As we were so far away from the hospital, we only saw her once a week for the last 3 months so its just like we haven't visited again yet. I suppose reality will hit tomorrow when we start making all the phone calls for funeral arrangements/ registering the death etc. DB1 seemed to be feeling the strain of being the most senior yesterday and feeling the responsibility. I have deliberately not spoken to him today as he said he was having a day off before the hard work starts tomorrow. Have spoken to DB2 though to try and discuss practical issues re the funeral arrangements so that I can give our thoughts and preferences to DB1. It was so much easier when we arranged Dad's funeral as just we did what Mum wanted, but now it's a 3 way decision - and all 3 of us are the indecisive type

BBB, when my DF died it really came home to me how sexist my country really is. As the eldest, I turned up expecting to take charge. On the pier, as our boat arrived, I saw all the island men lining up to speak to my (baby) (ok he was 26) brother about the arrangements.

Good luck with the decisions

Auriga Sadly, I do think you have to take charge when they aren't sure - DM seems to calm visibly when I do that (lucky I get lots of practice in RL!)

Eeeeek! Haven't talked to DM at all about her funeral. I will save that for when I go up in the Easter holidays with DH!

BigTillyMint It's not an easy conversation to have, but we nearly arranged for DF to be cremated because DM had thought that the fact that he had refused to buy a plot at the cemetery meant he didn't want to be buried (although they clearly hadn't discussed it). We fortunately found a booklet that he had written his wishes in just in time. This time we at least know that Mum is going in the same plot as Dad.

I did suggest to DH at the weekend that he may wish to check with his older DB that his parents (who are 87 & 91) have given instructions on what they want when the time comes rather than just assuming that they will have written it down somewhere and we will find it.

BBB, I am sorry, though it sounds as if the end was peaceful.

I did two hours each way every week for four months whilst my dad was dying. Plus worked full time. I was exhausted and quite run down for months afterwards. Once the funderal is over give yourself some real rest.

Auriga, questions and decisions are difficult for those who are losing their memory. Even "do you take sugar in your tea". When my mother is lucid I will discuss things generally with her, to form a view of what she is likely to want. (For example she remains adamant she would hate a live in carer, and I tend to agree.) Then I make decisions without fuss or argument. If she objects, I "remind" her that she previously agreed and rely on her pride for her not to admit she can't remember the conversation. Initially it was tough as she was fiercely independent, but things now go pretty smoothly, as I think she has accepted she does not need to be in control all the time and that others then don't rub this in.

All OK here. DM seemed surprisingly content when I saw her at the weekend. I think the antidepressents may be kicking in. A relief if they are, as my mother is aware, more or less, of how much capacity she has lost and finds it very difficult.

BBB, so sorry to hear your mum has passed.

I had to ask dad about his wishes for his and mums funerals etc, which was incredibly difficult, but I'm happier knowing that I have a plan to follow when it happens.

I had a lovely few sunny days in Arizona, and felt great for that (the work was fine too!). Got home, and within 15 minutes dad was on the phone demanding I order wheels for his mobility scooter, mum has decided she doesn't like their bath lift, can I order this other one....

I agree with NMS - I try to get an idea of what DM wants/doesn't want and then make/back up the decision. I had to remind her that she was desperately begging people to get her into a home when she was having a wobble when I went up the other day (due to the "friend" who was distressed to see her in there) and she knew I was right and stopped fretting!

CMOT, glad Arizona was good - it is very draining with Aged P's!

I don't have any problem with making decisions in Mum's best interests. I'm just noting the change from the way things were before, when she would want to decide for herself and would rubbish any suggestion I had to make.

She needed morphine again today and got confused and incoherent at one point (nothing to do with the morphine, hours later), but on the whole had a good day.

Tomorrow we'll find out if she's prepared to let anyone help her to have a shower. If she survives the night, that is.