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How do I cope? - Page 2 - Carers UK Forum

How do I cope?

Tell us a bit about yourself here.
Sue
I'm not sure if this will help or not but my Dad who passed at Christmas was equally intent on never leaving his home and like you I stubbornly kept him there beyond what most people would have chosen to do . All I wanted to add really was that he got to the stage where he was asking to go home when he was at home and asking when the people who owned the house would come back and he would have to leave ( he had lived here 60 years) so when I did finally make the decision a month before he passed , he made zero protest and didn't even seem to notice. I suppose what I'm trying to say is never say never and you will know when the time has come.
Henrietta
That's what I keep telling everyone. I'm not n denial, I know she can only get worse. When she does she will go into care. Putting her there whilst she's still aware of her home is, in my opinion, unnecessary.
At the end of my tether this morning I had a strop with the doctors surgery and insisted on a visit. Her Dr is on leave so demanded to see anyone qualified.
The result of the drs visit is a referral to Macmillan (12 months after my first request), district nurse visit to take bloods, a well being check and a social services referral.
At least I now feel as if some one is taking my concerns seriously.
Good, that's real progress this morning. Keep in touch. I know when my mum was very ill the support I had from other caring forum members was a huge help. How long will it be before MacMillan can visit? Everyone here who has used them speaks highly of the help they received.
I agree , never say never, and make no promises. Things can change rapidly and often at a crisis point when things can't be discussed.

Imho, once someone's life shrinks to one room, does it really matter where those 4 walls are? My Mum is in a residential home (her choice) and took her beloved furniture with her. Her room looks so much like home, her favourite paintings, photos and sherry glasses. ;)
She NEEDS the help even if in an ideal world she'd be able to walk to the shops (can just about manage across a small room), carry shopping back and cook it (she gets muddled by cooker knobs now), visit friends (now all deceased), do her crafts and read (cognition now not up to it). Her WANTS and dreams are having to take second place to her NEEDS

I am glad you are now getting some support, make sure it doesn't die off, and trust your instincts to know when the time for a move is right. Most of us struggle to role reverse into the parental role, but parent you will have to be.

Kr
MrsA
Mrs. A puts it in a nutshell. Sometimes on the forum we use the term "elderly toddler". It's not a term I like at all, but I just can't think of a better one.
Almost every day now we have people tearing their hair out trying to please parents who want this, that or the other.
Really we both want the same thing, for them to be young, fit and active again, but youth is the one thing we cannot give them. Our parents forget that we too may be pensioners with our own health problems, and the ever increasing pension age for women brings with it another set of challenges. Many simply cannot afford to give up work.
I felt incredibly guilty about not doing everything for mum, until I realised with the help of counselling that my two brothers did absolutely nothing and I should feel proud of what I did, not guilty of what I didn't. We have NOTHING to feel guilty about. Our parents' frailties are the price they have to pay for living a long life. We cannot always make them happy. Our role is to ensure that they are warm, clean and comfortable BUT not necessarily doing it all ourselves.
When my mum was in the nursing home it was a huge relief (even if it did take me a whole year to empty her "hoarder's" house!) Mum had 24/7 care, someone immediately available for pain relief or help. No more frantic 3am dashes to meet the ambulance at dead of night after another fall, etc. etc. I could go back to being her daughter, taking flowers, pretty nighties, having a chat etc. etc.
Not yet seen a district nurse. Not yet had any contact from Macmillan.
Called adult social services for advice again. They won't do a carers assessment without undertakings an assessment if mum. This needs to be requested by her Dr apparently.
I was then directed to yet another council run organisation with an answer machine. Still no call back.
Mum is getting worse by the hour but, as she's not consumed anything at all for several days, the vomitting and unset stomach have ceased.
If she tries to move, and she does frequently, her lips turn purple and she simply cannot get her breath.
I know this is the end of her life. I know she is not going to get better but a little support would help me.
I continually hear about care in the community, palliative care at home, support for carers. Where is it? How do I access it. All I seem to find Is redirection.
All the online support for carers state the obvious - look after yourself, take breaks, eat, exercise. Any one able to tell me how? Caring for mum is 24/7. She cannot be left unattended.
Ok, so in the time it took for me to spend a penny mum managed to fall out of bed despite having grab rails. It was the second time this morning.
She's too weak to help herself and I'm too weak to lift her off the floor on my own.
We have a private emergency care provider who are amazing. Both times they got here within 10 minutes of me hitting the alarm.
All well and good and mum's now back in bed but I now can't even visit the loo. And I thought the commode was for mum!
Sue, if your mother falls again, call an ambulance. They are trained to pick people up and used to doing it. The paramedics will also take a full view of the situation. A GP appointment for a phone call on April 10th is not appropriate in the situation. How about calling 111 and getting a GP to come out of hours? Just a thought.
This is definitely time to call the ambulance anyhow. Explain the symptoms, and say you CANNOT care any longer, that mum needs 24/7 care and at the moment Continuing Healthcare hasn't been arranged and Social Services are refusing to even do a Carers Assessment (you ARE entitled to one whether or not mum has had a Needs Assessment).
Sue
A lot of the advice given on here is for long term carers.
I think Mums situation has changed to a much more urgent short term situation and I too urge you to call for urgent medical help, whether that's GP urgent services or ambulance.

Damned SS and assessments can wait. She needs help now

Kr
MrsA