Responsibility for Elderly Parents? Support thread right here!

She is hanging in there, but only just. Dad is a trooper. I'm hiding in a dark lounge next door.

Man this is the hardest thing I've ever done. I managed about an hour of sleep, but was awake when the carer knocked on the door to say come. Her breathing and colour were awful, and I just feel sick.

Signorita

Late night vigil has begun. Mum deteriorated rapidly today. Now only a matter of time. Keeping my 86 year old Dad company. He's been wheeled down in him jammies, bless them. I'm scared of this bit.

Signorita, its great to hear of a positive nursing home experience. Hoisting will be much more comfortable for your mum. Do they have a bed which will put her into a sat with knees up position? That should let her breathe well.

My mum really struggled with the time change yesterday. She kept getting really upset with dad changing the clocks and trying to change them back. Two got broken in this process

Hello signorita.
Good that you gave visited- and great to hear that you are happy with her care. You can focus on time with her- sounds like a good plan to get someone to go with you. Treasure this time. Theas threads earlier this year were a very honest account of such a difficult time and might help you. And look after yourself. Brilliant advice from posters here- and ask anything.

Thanks thesandwich, helenluvsrob and whataboutbob, appreciate you responding.

I made the effort to go over again today (we're an hour and a quarter away), and I'm glad I did. They catheterised her today, and I've just spoken to the nurse because she had another fall this evening while transferring to the commode, so they're going to try and pop her into bed tomorrow (she always sits in her chair, as she finds it difficult to breathe and get comfy in the bed) - I presume that's so they can hoist her for number twos.

It's a great home - I used to work there myself, so know nearly all the staff, and have a lot of faith in them. She had a CHC assessment back in August, but I will check tomorrow and see if they can re-do it quickly - I suspect she may not last the week.

I've also taken the decision not to take our little one again. She didn't really interact with him today, and I can't cope when it's him and me; I really need to get somebody to come with me so she can have fifteen minutes with him and then they take him off while I stay the rest of the day. It's this I find very difficult, as she LOVES him to bits. He's her only grandchild, we had a very shaky start with him as he was a 27 weeker due to a life-threatening condition, and she's besotted with him. And he loves her too - whenever we mention 'gran' he says 'ello darlin', which is what she says when we rock up there!

Helen, I will look through your threads - thanks for letting me know.

I agree with Helenluvs- she certainly sounds like she should be on the fast track to Continuing HC. Sorry if it sounds brutal, but if someone has an expected prognosis of 3 months of less due to a medical condition, they should get CHC. And even if her prognosis is longer, she obviously has heavy nursing needs. Check the government paper on this. Also look at the excellent website by Care to be Different (disclaimer- I am in no way associated with them, but I found much helpful advice on their site when I was doing my dad's CHC application). You can ask for a CHC assessment at the care home. I don't want to be overly cynical, but some homes will not put it about that CHC is an option, in part because CCG s can be slow to pay up, and if the family are regular payers, why rock the boat. If the CH are no help, contact your local CCG and request an assessment. They do a checklist 1st to screen, then if that triggers a full assessment there is a longer meeting for the final assessment. Post again or pm me if you want further information.

CMOT.... ARGH, that is awful.

Signorita much hugs . From a practical point of view ask for an urgent assessment for continuing healthcare funding. I'm disgusted it hasn't been sorted. When mum came out for end of life care the CHC funding was proscessed within 48hrs. You should not pay for care in. Nursing home that is end of life care - that's an nhs expense not a social care / patient pays expense.

Don't let the move take you away from mum if you need to be there. Sounds like she hasn't got long. Hope everything goes as peacefully and gently as it can. My mum died in February - of exactly the same combination of conditions. I posted a lot at the time under my old username ( Theas18) including about her last few days and death. You may or may not find it helpful but it all went as well as it could really.

Sorry you are walking this path.

CMOT that is so awful . Hope he is ok.
Signorita-,welcome back- sorry to hear times are so hard. You have so much on. It is so hard dealing with the practical and all the emotions it brings. It is good to hear that there is care in place for your parents and brother.
Rant away here- lots of wisdom and support and sympathetic ears. Look after yourself too.

Hi everybody - I'm dipping back into this thread, after joining quite a while back (elderly father in care, poorly mother, disabled brother, toddler and husband working away).

Things have been a bit up and down over summer, Dad has settled into the home really well, and for a nearly 86 year old is doing marvellously well.

Mum had a hospital admission of almost three weeks in August, then another one in September, and she has chosen to not have treatment for her conditions anymore (severe heart failure and CKD). She is now receiving palliative care in the same home as Dad, and I'm still waiting for the council to work out what her contributions should be (after a ten week wait for them to assess her in the first place, and the only reason it got done was on discharge from the stay in hospital).

Bro has been struggling, but thankfully some folk from church are now stepping in to help out with him.

We are just about to move house, to be nearer to them all - but as there's delay in exchanging and it's a new build that has not quite been signed off by the builders yet, I'm wondering what will happen first - Mum going, or us moving. I'm just feeling quite low, as there was a marked decline in her today when I went (I last went on Tuesday). She was quite sleepy, a bit slurred when speaking, cyanosed fingers and a little confused about what time of day it was. She is being sick a lot (she has awful fluid retention), and is on oramorph at night. I'm not expecting her to struggle on much longer. And it's surprising me how I feel about it all, because we weren't close as I was growing up, and I'm beginning to regret all of that. And she brightens up so much when I take the toddler, and I'm sad that she's going to miss him grow up. I feel so isolated in my thoughts - my husband is super supportive, but nobody really knows what it's like in your head, do they?

Sorry - haven't read back up the thread. Hugs to all of you going through difficulties.

They've both been sent home from A&E at all hours - their nearest big hospital is massively over stretched though, so he was lucky that he was straight in the doors rather than waiting in an ambulance for hours.

Alas as dad does all the shopping still, and he just cannot get the correlation between what he eats and his blood sugars it is a bit of an issue. His carer does try to police it, but he doesn't listen. In spite of quite a bit of insulin, his levels are normally 20 - this time it was 38.

That is horrendous. Unbelievable. I thought night time discharges were accepted as being v poor practice everyone knew they needed to be avoided.
About the spikes, we found with Dad it had a big impact on his behaviour so do keep an eye out for that. He was just a lot more aggressive when his levels were high. We did a purge of all the sugary drinks he was having and they got replaced by "diet" drinks. He also got another diabetes drug added in and it has made a difference.

I don't have words

Because they sent him home in a taxi who just dumped him at the front gate rather than seeing him in.

Oh CMOT! How is he? Unbelievable. Is he alright?

OMG CMOT HTF did they let that happen?

If you know any of her friends to talk to, they are great allies. I'll blame anyone for things that my parents need but don't want. I also use 'my friends mum' as an example of things. Its sort of true, as they are examples from people on here, but it all helps when you are persuading someone that they need a bath lift.

I've been away in the US for a week. Dad had a massive blood sugar spike, got taken to A&E (the integrated locality team came out and saw him, organised carers for mum), then discharged at 1am. When he got home, mum had bolted the door and he slept all night in the shed .

Thanks Sandwich and Florentina. As yet, we have yet to encounter chaps in uniform, but the doctor is definitely an authority figure. SiL is endeavouring to recruit to the cause, but MiL's GP is a long term locum and the previous one retired.

Also the cleaner and carers, know a lot more than me. I bang my head against a brick wall, when suddenly he will say. Mary said I should.....

I was just about to post something very similar. We quoted the doctor said you had to..... quite often. Also getting people not so close to tell them things. My son in law comes to the rescue when telling my mums husband to do things.

I think it is a combination of, people they see as authority figures, and people who are not so emotionally involved being that little bit harder and matter of fact.

Hello cresset and all the regulars. It sounds like you are thinking ahead- which helps a lot. I would add my tip of men in uniform being invaluable at persuading elderlies to do something- it was the community policeman( who we asked??!) who told mil she couldn't drive any more after too many incidents( dementia) and the firemen( who travel in pairs for safety ??) who persuaded dm she needed an emergency alarm..... It is a major challenge and the advice and support here is brilliant.

Thank you for the welcome! As you say, not the club any of us wants to join but I am very aware that my cousins had a torrid time with their mum and we are trying to avoid following in the same steps. Not sure how we can avoid it, but trying anyway.

There isn't a current crisis; SiL is practical and v good, and although tact isn't naturally her strongest point, she is getting the hang of managing MiL. We are trying to make sure we are prepared for anything that arises and kept on top of what's happening with her medical needs but as the GP says, you can't make her do what you think best!

Hats off to all of you. Am learning that this coping and caring gig doesn't seem to be something one can really plan too much. Doubtless there is a crisis in store with cold weather coming but in the meantime, she is warm and relatively safe at home (no gas, except central heating); she feels secure and is still happily playing bridge. I shall check in here regularly, and marvel at the strength and resilience of the human spirit. to you all for your help and advice.

Hi cressetmama!

All the advice above is good, and I can't add much else - I am relatively new to this (only really stepped things up 6 months ago when we started the diagnosis process), but others are very knowledgeable.

My DM is still "managing" at home (200miles away from me, the only child) with a minimum of carer time, but I know it will need to be increased sooner or later. She is also determined to stay at home. It is probably an easier situation than yours because there is only me to consult with and I have absolutely no intention of becoming her (or anyone elses!) carer as I would be CRAP at it. Plus it just wouldn't work at all in our house. So I am fully expecting a crisis at some point.

florentina, how draining

Cressetmama, your situation will be so familiar with everyone here.

It is almost a problem without a solution, because we cannot force our relatives to accept help. We don't really know what is "best" for another person and because a person with dementia will change their mind so many times about what they want to happen.

Staying in their home, although not the safest option is sometimes the only comfort and security they have.

I was lucky that by the time my mum went into care, her Alzheimer's was so advanced that she thought it was her own home. If a person does have some comprehension of real life, then the whole concept of a care home can be terrifying. Very often a crisis has to happen before the person accepts the need for further help.

Maybe you could put it to her that the only way she can stay in her own home is to accept the help. No guarantee that she will listen though.

My heart goes out to you. I have had 8 years of this. My mum is in hospital at the moment under the care of the 'end of life team'. But I am starting all over again with her husband, who is 8 years younger.