Hi, I’m about to move back to the UK to take care of my 83yo Mum who has dementia and her partner who has advanced cancer.
I’m just starting to read more about the stages of dementia but I would say my Mum is mid-stage. She can no longer read or concentrate too long, she does make cups of tea, set the table and deal with her personal care (with some reminders). In general she is cheerful and amenable and still full of fun - she always has been, so I count myself lucky. I’m hoping this aspect is not going to change too much!?
Anyway, I have POA for Mum but when I looked into it, I found it was a financial POA. Should I be concerned about this? I think it’s too late to put a new POA in place but I’d hate to think others would be making care decisions for her when I’m the one who knows her best.
How will you manage financially?
Dementia is a cruel disease, ultimately mum will need help with every aspect of life and personal care, may not even know who you are, requiring 24 hour care in a nursing home. Do NOT move back until you know more about dementia.
My husband is still working so we have money coming in. Mum also has a small pension and a house that is rented out (we have a great tenant but at some stage it will need to be sold) so although there’s not an abundance of money it should be sufficient. I believe that although I won’t be able to claim benefits I will be able to get NI credits once I get her Attendance Allowance sorted out. Mum currently lives at her partners house but once he passes away we will need to move but I don’t want to move to her house because my support people are at the other end of the country. I can’t bring here here because of health care although we will spend some time here with my family, depending on her insurance. My husband and family are supportive about this.
I probably sound a little naive but I’m trying to look at this positively. There is a point that I won’t be able to cope with her care needs, I understand that, at which time I will need to look for a care home nearer to my supports. I’ve spent the last 10 years caring for my MIL and her many health issues and suffered some Carer fatigue but then she was a difficult negative person. My Mum is fit, healthy and cheerful, we need to enjoy what time we have left before this awful disease steals her totally away. I’ll be documenting my journey which will help with my awareness of my own fatigue and mental state.
Good Morning, I would suggest that you start to organise a Lasting POA which covers health and wellbeing as soon as you can. I have had to get one organised and this will take about 8 weeks. I had to as the receptionist at our GP would not accept me speaking for my mother for whom I am a full time carer for, as I only had an Enduring POA. I went through Mum’s solicitor but I think that you can do it over the internet.
If mum lives with someone with advanced cancer, where are you going to fit in as far as he is concerned?
Will he need to sell his house to fund his nursing home fees at the end of his life?
(Don’t think I’m being negative about your plan. We have had lots of people here who have reacted to a situation, jumped in, and regretted it for the rest of their lives. I just want you to know what the potential problems might be.)
Lesley, how far along was your Mum when she did the health POA? The financial one was done two years ago, they went to a solicitor and I can’t believe that they overlooked doing the one for health. Your situation with the receptionist is exactly the sort of thing I want to avoid. I just wondered if having the lasting power of attorney for property would mean they are less likely to question her mental capacity. It is without any doubt that she would want me to be her advocate.
Bowlingbun, I have a good relationship with her partner but my “caring” will be minimal. I was not live at the house, there is not room for me, I will visit, make meals, take Mum out, do washing, cleaning etc but his family are also around and the palliative care team are looking after his needs. He wants to stay at home as long as possible, I believe he has enough funds to cover any hospice costs but their finances are quite separate. His main worry is Mum and I can ease that for him but at the same time I have time to adjust to my new situation. The POA is a concern because It’s that type of stuff that has the ability to drive me crazy.
I believe I’m strong enough, and selfish enough to know when it’s time for me to bow out of the Carer’s role. Mum and I have had an equal relationship for many years, I often feel that people who struggle have not had an equal relationship and therefore the transition is a lot harder because they have to deal with those feelings on top of the all the responsibility they now bear.
My late father set up the Enduring POA before he died in 2005 so it was before the time that the law was changed and one had to have a Lasting POA as well. I have not done anything up to now as I did not need to but now all the authorities are becoming very strong on everyone having a Lasting POA so it has to be done.
EVERYONE SHOULD SIGN A POA FOR THEMSELVES WHEN THEY ARE YOUNG, FIT AND HEALTHY!!
My mum updated hers after dad died, I had both Health and Welfare and Finance.
When mum was very ill in the nursing home, her GP rang me to say that she was in pain but the pain relief wasn’t working. I have read enough about pain relief to know that if you increase the dose, it puts someone to sleep, permanently.
At the time mum had 28 different health issues, couldn’t hear properly, couldn’t see properly, couldn’t move independently, couldn’t eat properly, and was incontinent (but still didn’t qualify for CHC!). She had told the GP months before, when discussing DNR (Do Not Resuscitate) that she never wanted to go back to hospital again, that she wanted palliative care only, to “let nature take it’s course” and I was in agreement. I also knew that she was resistant to all the antibiotics, apart from one that made her feel so bad she said she didn’t want to take it.
A sore had developed on her chest so large that she had to have a dressing the size of an A4 piece of paper.
The Care Manager, who was really kind to me and very professional too (I was so lucky to have had her involvement) had already told me that when the dressing was removed, the sore was so deep they could see mum’s ribs. She also said that if she left one of her dogs to suffer like mum, the RSPCA would prosecute her.
When the doctor rang me to say that mum was in pain that they couldn’t help, I reminded her that I had POA, and that pain relief MUST be top priority “regardless of consequences”. Mum had the pain relief she needed, and passed away peacefully in her sleep two days later. I will miss her for the rest of my life, she was my mum, but I could not have wished her to live another hour in the state she was in.
There was NO quality of life any more. Mum had told me that sometimes when she woke up she thought “Oh no, not another day…”
I have ordered my eldest son, who has POA for me, to do the same for me when my time comes.
Bowlingbun, what a horrible situation, at least you had the POA and could advocate for your Mum, can you imagine if you didn’t. Again this is my fear, that the Drs will not listen to me unless I have a POA.
Do you think it’s worth going to the Solicitors she originally used for the Property POA and get them to complete the Health POA or should I just do the form, get her to sign it and send it in?
I’m not sure why the Solicitors did not tell them she should have a Health POA, it boggles my mind that there is that sort of incompetence.
The rules changed a few years ago. It’s only relatively recently that “Health and Welfare” POA’s were done.
So don’t think the solicitors weren’t doing their job properly. Go back to them along the lines of “Please explain…what do I need to do now?”
My wife and I only took out the financial POAs on each other… Maybe in my naivety I thought the NHS would do the right thing anyway.
As it turned when my wife was very poorly and dying at the hospital the doctor consulted
with me as to the best thing to do for her, so a health POA would not have helped me at all.
My father was dying of prostate cancer, the GP knew how disabled mum was, knew that I would be responsible for mum, but refused to talk to me because of “patient confidentiality”.
This is the scenario where H&W is really useful, didn’t exist though when dad was ill…
Far better to have a loved one make serious decisions than someone who doesn’t know you at all.
At just £82 each online, no solicitor needed, they are a vital and affordable necessity, imho