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[Pennyfarthing]

I hope nobody minds me posting this but I think it's relevant to the topic

http://www.dailymail.co.uk/news/article-2217747/A-lonely-death-care-pathway-MPs-demand-action-patient-chosen-die-doctors-telling-family.html

I read this and felt a bit peculiar because I think this may have been how my Dad died a few year ago.   The nurse who admitted him took me into her office and was clearly in a hurry so rushed through all his admission details etc.  I remember agreeing to him not being resuscitated (he was very ill and 85) and other than that she just quickly told me when I could visit.  She used some terms which involved initials but didn't explain what they meant.

Dad was kept very clean and comfortable but I was never told that he only had a few days to live.  I remember taking him in a very light and tasty yoghourt and 2 nurses were in the room and I asked whether they could give it to him as he liked them and as I turned away I saw them both give each other a funny look but didn't know what this meant.  I actually think now they had probably decided to stop all food and drink and not told me because looking back I never saw any evidence of anything like that.  Dad died alone and I would have stayed with him if I'd been told his death was imminent. 

[Margarett]

That is so sad, PF, sending you a hug.

[limpy]

CLKD I think your mum will be fine, well, as well as can be expected, till the funeral is over. Then, she will want company / something to do. Hope everything goes ok, enjoy your holiday.

[Trey]

One reason I wanted Don at home is that I wanted total control and I knew his wishes and needs better than anyone.  But not sure if I weren't a reg. nurse if I could have done it.  I think it is deceitful for the family not to be an integral part of the care team, in hospital or not.  I can sure understand how you must feel about this, PF.

[CLKD]

This thread may become important for me after burying Mum's live-in Man-friend last week.  I think she already has 2 more waifs and strays under her wing  .......... and is still showing great 'attitude' to the late Man-friend's relatives but as she has narcissitic tendancies .......... I await her regular 9.15 a.m. Monday phone call with trepidation ........

[limpy]

Is she going to come and stay with you?

Who are the waifs and strays?

[honeybun]

Young waifs and strays CLKD....or what.

Elderly relatives can be very challenging to say the least.

Some mature into the sweet little old lady/man that we all would wish to have.

Others are just.....well enough said.

Honeyb
x

[Bette]

F-i-l is a source of worry at the moment. OH went round this morning (I was working today) to find him and m-i-l barely speaking which OH finds very difficult as he hates friction (we never argue, so just aren't used to it.) F-i-l is very frail (end-stage COPD so on oxygen most of the time) and is very frustrated by not being able to move round much. When he was in respite care, he spent a lot of time in his wheelchair so was able to move around the room a bit. On returning home, he decided that he wanted to have his wheelchair in place of his armchair and insisted in m-i-l and him trying to move it rather than wait for help (as she wanted to.) The inevitable happened, he fell and she had to get a neighbour in to help lift him. She's furious with him and he can't see why. OH spent the morning trying to make the peace. 
In contrast, Mum is being wonderful. I'd cut my visits down to 2 a week and on Thurs, she said to make it once a week and that I didn't need to go round till next Fri (although we'll speak on the phone every day.) I made sure that she was well stocked up, changed her bed, took her washing etc. Suddenly realised today that I'm working every day now until Sunday (including Friday) and that seeing her would be possible but a rush and I realise that my IBS flare-up is telling me to slow down. So, I took a deep breath and told her this on the phone (about the work, I mean, not the IBS.) No problem, she says. She'll ask a friend to get her some milk and anything else she needs but is sure she'll be fine until a week tomorrow. The warden checks on her every day, she goes over to the complex hall 3 times a week to socialise and has someone in (hairdresser, cleaner etc.) on the other days so I know that she'll be fine but I am grateful to her for thinking of me too.  She has been a bit moody the last couple of times I've visited but conscious of that and apologetic and she never stops thanking me for everything I do. I think that telling her this has made her feel that she can do something for me too and makes her feel a little more independent. She just needs to know that I'm there if she needs me but will enjoy feeling that she's managing to do a few things without me.
Bette x

[honeybun]

Bette....you are so lucky to have one of the sweet old ladies that others wish they could have.
And your mum is lucky to have you.

It makes me so sad for myself and the way I feel. The abuse I got last week because I missed a day because I had a cold 

During the night last night I had terrible tummy pains and ended up on the loo(sorry if TMI ) I felt really sick but it passed. The only thing I could think of at 3am was the fall out if I did not go to mums in the morning and that is just not right. OH does not even know I was unwell....I snuck about and went to the furthest away loo so he would not hear me. He would be so angry if he knew that was my main concern.

Funny old world really.

Treasure your mum....she is one in a million and I truly envy you.

Honeyb
x

[CLKD]

Mum has to have someone to 'care' for so that she 'doesn't bother her daughters'  .......... so 13 months after Dad died she got involved: long story short: with a single divorced/bereaved man.  They went out and about together but she would never leave him to come out and about with us; although we did go out for meals when we visited her/them: and in recent weeks became his full carer though thank goodness not for long and she had lots of support from the NHS. 

In the meantime - since we went in Sept., a young couple have been in and out of her house 'looking after things'.  They did a lot at her late friends house in the last few months ............ but I can see that, when C.mas arrives, it will be the 'young couple' who need C.mas dinner cooked for them: I may be wrong and she may accept our offer of C.mas here    ............

Watch this space, you won't need the UK Soaps 

[Bette]

I know that I'm lucky, Honeyb but I also know that it wouldn't be right to make myself ill - wouldn't be fair on OH or myself. I do worry about you; please try to find a way to look after yourself as well as your Mum. 
Bette x

[CLKD]

I don't think that parents realise that we are getting older ourselves  although when Mum does have something happen, even if it's a light bulb pop, she rings and says 'don't get old' .......... it seems to take that much more energy to face difficulties and now she's got the house to herself again ..........

I will have to word my next letter carefully and not put any of us under any pressure 

[groundhog]

So glad I found this thread.  My mother had brain haemorrage nearly 4 months ago - its been a nightmare - she has been in hospital ever since and has been confused aggressive agitated etc etc.  But 1- days ago she had an op to remove some fluid and is MUCH better.  She is now in a rehab unit but if she carries on like this she will be ready for discharge.  But what do we do - she lives alone although her terraced house could be adapted so its all on one level - im not sure tho if she is well enough to stay alone overnight and from what i can gather there is no help available over night?? 
Should I bring her to live with us - problems - my husband is ok with it but dont think he has thought it through - we have one toilet -  i have a bag ( ileostomy) plus arthritis so would struggle as her main carer - i need big op in next few months.
I dont know what to do - i have a sister but she is much younger with 2 toddlers.  My mother has sisters who would pop in if she lived in her house but probably not if she lived with me as my house is more remote.  In fact she would see no one living here as its very quiet.  It is such a problem - i have read your posts and nice to know i am not alone.  I have just finished work because of my health so i feel guilty not taking complete responsibility for her.  But me and my OH have been married 32 years - we are set in our ways so im not sure how it would work having her in our small bungalow.
Oh dear  - nothing is ever easy is it.  Plus on top of all this i have some post meno bleeding to worry about - beam me up

[Taz2]

Sorry that you are having to deal with all of this Groundhog. When my mum and dad were treated in hospital during their illnesses we were always assigned some sort of hospital social worker - can't remember what their technical name was - who discussed things with me first as the main relative. There was a whole team put together to assess them and work out what they could and couldn't cope with. I think you should defiinitely have a word with the hospital or rehab centre or, failing that, her GP because this needs to be put in place before she is discharged. You might find that this link helpful - it is overly wordy in my opinion but scrolling through it you might begin to get a clearer idea of your options. My mum and dad had visits by carers for two weeks after discharge from hospital - I think that all elderly people are entitled to this but perhaps the link will make this clearer http://www.ageuk.org.uk/documents/en-gb/factsheets/fs37_hospital_discharge_arrangements_fcs.pdf'dtrk=true

Taz x

[Bette]

  Groundhog.
Taz is right, you should find that there's care put in place before she's discharged from hospital. In Mum's case, she was under the care of the "Interim Care Team" and the physio at the hospital arranged for that before she went home. Within an hour of taking her home (she lives in a sheltered accommodation bungalow) we were visited by the lady in charge of her care. She was assessed and the lady ordered things she would need from the British Red Cross (toilet aid, walkers etc) and set up a schedule of 4 carers a day, starting that evening. I stayed over the first night as Mum was obviously nervous about being alone but the carers still came and did everything for her. The original plan was for this to last for 4 weeks, with them gradually withdrawing care as she improved; it included physio and nurse visits. As it happens, her progress was slower than expected (the dreaded urine infections and confusion  ) so they supported her for longer. They tried to pass her care over to social services (by then she needed only care visits, not physio etc) but as they were snowed under, the Interim Care Team kept her on which I thought was great. Eventually, we decided that she could manage alone (with my help with shopping, washing, meals etc) and she's doing well.
It may well be different for you as your Mum's needs will be different and things can vary from place to place but I hope this might encourage you to ask for all that's available. I was pleasantly surprised at the support out there. It's still exhausting arranging it all and liaising between the various agencies (although they were all great, as was her gp) and the emotional toll is not to be under-estimated. I know that personally I couldn't have coped with having Mum live with us (although OH offered) and that's with her health being relatively strong and mine being good. At one point, I wasn't sure if she'd be able to stay in her bungalow (when her confusion was bad) and found that there was a Extra Care facility close by which looked great; there are options out there other than you having to have her to live with you.
Bette x