The second new shiny 2019 thread ...

whatever not selfish at all. I don't know the backstory but I am sorry you are going through this. hugs to you

Selfishly checking back in for a hand hold. Kinda needed to close the box in my head for a while but all coming up again now as today I am being 'allowed' to visit my family home ( at a time convenient to my DB when he will be out) for the final time before it is sold. Not set foot in it since the week DM died. It's the only house I knew and now it has come to this , where I'm allowed brief access while accompanied by one of the trustees of their estate.

alice Although you don't want your DM to be upset in the hospital and her stay prolonged, the extra 'break' it gives your DF will be of benefit. It's really hard to do, but if you can, try to get DF to take a few days' break from visiting to help him recharge. A few skipped visits while your mum is being cared for by the hospital team might give him a tiny boost.

alice I'm sorry, this is the issue we found with private carers: they are great when the client is compliant, reasonable, easy to handle. Unfortunately, when issues start to arise they back right off - because they can, because unfortunately there are easier clients which makes for more profit.

It's a very hard thing to handle, because you are having to think about your dad as well, and what SS will offer may well not be as frequent or as good as what you are currently paying for.

Did they sort the urine infection out?

Thanks both. It appears that the company providing carers don't want to continue the contract and have made some fairly wild statements (untrue and easily disproved by their own contact book).
Hopefully we can start to move forwards.

but isn't Alice's question, why aren't SS onside already?

I wonder if it's worth contacting PALS. I also wonder if your mother has said something outrageous which they have to investigate for safeguarding reasons and therefore can't tell you.

Alice I think this is where you need to get SS on side: explain the situation to them from your side, and they should help get her back home (if she's up to that). Maybe go through PALS and ask to speak to the ward liaison person? It's very difficult, and there is also the thing that taking an older person out of their comfort zone can make things much much worse... my DM never had dementia til she was hospitalised and it all went tits up. Equally, if they have the urine infection under control that can make an absolutely massive difference.

Thanks for the responses. She is looked after by my Dad and us day to day with regular carer visits. I think that the main frustration is that we are struggling to establish a dialogue and that they appear to be ignoring what my parents want. Hopefully we will get through it.

Alice "They won't give details"

so who is normally at home to look after your mother? I wonder if that's their concern, that the main carer isn't enough or something like that?

sorry you are going through this

Alice Just a thought but maybe with the UTI and different routine/ location your mum's dementia has escalated and has said something about the family that has set alarm bells ringing. As the SW don't know you already, maybe they need to check in out.

For example, and this is quite extreme, there was a period of about a week when DM made dozens of convincing accusations about my DF disappearing to have sex in his car with other people. [He no longer had a car and was out food shopping with his Alzheimer's visitor.] The SW team knew mum's accusations were dementia-led.

Hoping that someone has advice - mother, 89, has advanced dementia but knows her husband, home etc. Currently in local community hospital due to a UTI. Social Workers initially said she could home and carers would restart visits. Was expecting her to go home yesterday. They've now said that she can't as there are concerns. They won't give details and say that she is ok in hospital for now (I think that they want her to move to a care home rather than go home). She isn't ok in hospital - she looks terrified most of the time and begs to go home from the minute that you visit until the minute that you leave.

We have told SS that if they tell us what needs to be done to the house etc we will do it. Still nothing.

They've changed her medication and it is taking her time to get used to it. Again, they didn't tell us.

We don't have power of attorney and I understand that they are responsible for her but we (husband, children) feel excluded and that the hospital would be happier if we just didn't visit etc. Has anyone had any luck in getting Social Services to work with them rather than against them?

If my mother would be happy in a home then we would consider it but she isn't settling in a community hospital and I don't think that she would in a home.

Sorry for the rant but I'm really struggling here.

Ilady thank you! rosa this is the place to moan - no need to apologise, I'm glad you had a good trip out.

Mums (our?) tenants moved in today as far as I know. I had a megapanic when I got home about midday from various errands, re the utilities and all that shit. Cue 3 hours of frantic phonecalls, scrabbling through mums paperwork (all in a heap), cancelling normal house insurance, setting up landlords insurance, blah. Achieved it tho, despite DB sticking oar in a few times, but seem to have set his mind at rest too.

All of it serves to keep my mind off DH, which is good (I think?) I read through all the stoma literature today, that was cheery, but I think it will be OK once we get to grips with it. There is a thread in life limiting illness where a poster's DH has just died from bowel cancer - I know we are lucky to have the option of surgery. cockroach all.

"it's much more scary to think that you may have 6 years or even 16 to live with dementia."

this is terrifying isn't it.

sorry for all the moaning last week. Went out with mum as planned, tbh she only managed about 1.5 hours anyway and I enjoyed the place we went to.

Minty I used to do historical fiction, have a couple of novel drafts from years ago. however, I have been thinking things over a lot since i posted and for my own sanity I want to have as few commitments as possible at the moment.

Yolo, I have been reading your posts here for a while. I don't know how you have kept going after all you have had to deal with. I am glad you have got your mother's house sorted out. I can imagine with all that's going on dealing with dd1 dissertation was not part of your plan but once again you rose to occasion. I hope things go well for your DH. I hope you can get a rest, spend sometime in the garden with the 🐕. 🍫🍰🍸🍸
When your DH recovers try and go on a holiday as you well deserve one now.

yolo you have achieved so much. Thinking of you saying your goodbyes to the house, and facing what’s ahead with dh. Hope you can take some time out, in the garden, with the dog, 🌺🌺🍷🍷.
cockroach to all.

Mum's house is virtually empty, and clean, garden looks good. Tenants/buyers move in on Monday. Just have to pick up final bits over the w/e.

Fun meeting with stoma nurse, more info about bowels than I ever wanted to know. To cap it off, she said 'and you do know you will be impotent afterwards?' We knew it was a possibility, but she seemed to say it would be definite. Tbh, as long as he is alive and well with good quality of life that is all that matters, but it must be a blow to the male ego. and cockroach all round. TFIF.

Oh yolo 🌺🌺🌺

thank you minty DD flaked out in bed, I'm heading that way right now.
I agree about the fear of being so needy and no quality of life. Quality of life is the most important thing, and I cannot imagine I will want to hang on to it if I cant be in charge of myself. I pray to god (or whoever) that Dignity in Dying start to pave the way for us all. And on that cheery note!! etc for everyone!

Wow yolo what a day, you poor thing.

How's DD now? Do you have anything planned with the family over the weekend - hope you get some down time.

...if a one way trip to Switzerland is what it takes when the time comes, then that's what I'll do.

I've said exactly the same thing...be coming so needy and having so little quality of life absolutely terrifies me.

dint I can kind of accept that seeing mum might become a bit of a chore, simply because I've been there and my DDs know what it is like. I am determined I will not be a burden, if a one way trip to Switzerland is what it takes when the time comes, then that's what I'll do.

Mega stressful day today: got up at 7 to find DD1 throwing up and crying with panic over her dissertation which was due in at 6pm today. Had to be at mums at 8 to wait for British Heart Foundation to collect furniture. DD1 came too, frantic emails to tutor etc. Two miserable Romanians (sorry!) turned up at 9.10 and refused to take anything heavy on really spurious grounds, nastly lazy little shits they were. Got home at 10am, spent day working with DD1 to get her diss into shape to send in - if she didnt submit whole year would have been wasted.

On the plus side: DH organised 2 of his guys and a large van to bring all remaining furniture back here and dump in our garage, and diss was submitted 15 mins before deadline. What a day - and tomorrow we meet the stoma nurse for a 'chat' - happy Friday, and the hugest cockroach to you all

so actually I think mum would like to see us together more often but sis and I feel it's a better division of labour to go separately.

I think this is one of the situations where it is best to accept that your traditional roles viz a viz your parents are now reversed. I really struggle with this myself but see my sister's point that if you think of your mother as a toddler saying I want you both to come together it becomes much more clear that it is not a good use of scarce resources.

it makes much more sense for you to spell each other and enjoy the break when it isn't your turn.

Doesn't make it easier for your mother to accept but it really is what it is.

Bless him, at least he has a good appetite.

My dad has always liked his food, but never been inclined to overeating or snacking. He has cereal and half a banana for breakfast, a sandwich or cheese and biscuits with some fruit/veg and maybe a Kit Kat for lunch, and whatever Mum does for dinner, which she serves up in fairly modest portions and he never finishes.

I feel awful thinking/saying this, but I don't think the fact that my mum isn't interested in cooking and relies largely on pre-prepped stuff and ready meals is helping.

In some ways I'd love to be able to do a house swap and go and take care of him myself full time for a few weeks to see if it made a difference, but it's just not possible practically.