Re: Carol Bradley Bursack's wise words on what to do when siblings can't agree on care: But how do I trust people I just don't trust?
I care 24/7 for my 89 year old frail mother who has severe CHF, stroke, mobility problems and early ?vascular dementia. I have telephoned or visited my mother every day without fail since the 2nd November 1999, when my dad died after 46 years of strong but unhappy marriage. I've lived with her for the last five years; her dependency has gradually increased, and for the last two years her illness has been life-threatening: she needs constant attendance from a vigilant, informed and above all motivated care-giver.
I have three older siblings. Brother 1 and sister have joint POA for finance. Brother 2 rarely surfaces. We're not close in age, and there's the usual emotional muck-heap. We're all argumentative and opinionated.
The problem is that The Three and I have diametrically opposed views on key points of principle that are becoming relevant. The 3 are in favour of voluntary euthanasia: I oppose it (and thank God it's still illegal here. It's the quickest route to sanctioning convenient murder of the elderly that I can think of - oh, always for their own good, of course). They dismiss my mother's right to autonomy, believing that they know better what her best interests are; I bang my head against the wall trying every day to understand how she wants her life arranged. They are atheists, ranging from militant to indifferent on the subject; I don't care what religious label He's wearing, but I do believe in some higher imperative that all religions share in teaching us to live by, and I feel strongly that belief can be a strong framework for coping with life (including death). We were all brought up and educated as Anglicans.
Only... when I was 14, the younger brother aged 18 and I were told during a row between my parents that my mother is Jewish. First we'd heard of it. It had just somehow never come up. My parents were married in church. I don't know - never will know - if my mother told my father about her background before they married. This was the early 1950s, a time when quite a lot of people preferred to keep it quiet. I've learned since that she was confirmed when she was a schoolgirl, in the 1930s (er, ditto, in Europe) at a Christian boarding school in England her parents sent her and her sisters to because they lived in India. I can't tell you what the Church thinks about the validity of confirmation without baptism, in the case of a 13 year old girl whose classmates were all being confirmed at the same time; I haven't asked. Whatever.
Same pattern with our reactions to this information. The 3 deny it. That simple! I suppose it helps if you're an atheist, or maybe that's what made them so, I don't know. Whereas I married straight back in, at 19, and haven't regretted it even though I long ago divorced.
Two things are freaking me out. 1. My sister wrote in an email that a financial plan to insure my mother for lifelong care fees wouldn't work because "the money would be wasted if she died too soon." My sister has POA; and this is her idea of acting in my mother's best interests. Meanwhile the 3 are looking for nice cheap care homes near - not too near, are you kidding?! - their own homes. 2. I am afraid that my siblings will gang up and leave me with the choice that either I let them take my mother's care out of my hands or I tear my mother apart emotionally by fighting them bloodily and to destruction. And not one of them, not one, has asked my mother or asked themselves whether she wants to live in residential care. I have. She doesn't, she wants to live in her own home. All this sh1t- storm so far is about one week's respite care. Crazy.
I am afraid - aren't I? - that my siblings are plotting - in the politest, kindest and most lawful way possible - to kidnap, murder and rob my mother.
Please point out to me specifically where I am being paranoid. I must be, no? My siblings are not kidnappers, murderers or thieves. By their own lights they too want the best for my mother. Surely.
Please tell me how I can relax, just trust them to find a week's good respite care and let my mother enjoy it, when they are looking at residential care homes that offer no nursing support because they don't agree she needs any nursing care. They do not understand her, do not want to understand her, do not know her, do not know that they don't know her, and don't agree that any of it's important. This year all 3 added together have spent maybe 60 hours in her company, estimating generously.
What do I do? Lawyer up? Heeellllppp!
PS Please don't suggest talking to them, not on its own anyway. Conversations with my siblings make me wake from dreams of extreme violence with a happy smile on my face. It's a worry.
Need sleep. All will be well.
Just, you're right. Thank you. You can't come with us on the visit tomorrow, can you..?! I know, I'll take your reminders with me instead. And the big deal POA issues I'm getting advice on next week - hope they'll be as reassuring and sane as you are. Thanks again, xxx
PS I'm genuinely hoping the breakfast issue will prove to be negotiable. Otherwise mother will break a hip by turning on her heel and marching out of the building...
Is all this drama over where Mother will spend ONE WEEK while you have some respite from caregiving? I can understand that you want perfect care for your mother at all times, But no care center is perfect. Keep an open mind as you visit the one near your brother. They don't have a nursing staff -- but you don't have a nursing staff in your home, either. In either case if the need arose Mother would have to go to hospital or some other arrangement would be made quickly. Now, no breakfast after 8:00 would be the deal-breaker for me, but even I could tolerate that for one week.
So what is the real issue here? Are you worried about what will happen after the one week is up? Do you seriously think The Three may kidnap her? From what you've said, they have a nice deal going with someone else (you) dealing with her. Why would they disrupt that, at considerable cost?
If this is just about a week's care, relax. Let all the "they're atheists and Mother is Jewish and I believe in marriage" concerns go. None of that is going to change in a week, no matter where she is.
If you have other issues -- if you are worried that she will not be allowed to return to you when the week is up, for example -- those are the issues you should be talking to a lawyer about.
I would also offer this suggestion: You NEED respite. No one can do this level of caregiving 24/7/365 and retain sanity. Whether Mother wants to stay somewhere for a week or not, you need to make it happen. You need short breaks throughout the month and longer breaks periodically. To be the best caregiver you can be, you need to take care of you, too.
Bro and sis appointed jointly because bro is favourite and most trusted child and sis had a successful career in banking before motherhood. It made sense at the time, when mother didn't know she'd actually ever need looking after.
The Enduring Power of Attorney instrument was drawn up in 2004, when my mother had already been ill for eight years and no one was envisaging long-term full-time care; plus there's no family history of (or, therefore, experience of managing) dementia. So I doubt if anyone really thought it would come into force, so I doubt if anyone really thought it through before agreeing to act; and by the time the subject came up again, in 2012, it had been pretty much forgotten about.
After the strokes in February, when the dementia first appeared, my sister set about registering the POA. I was fine with that until a lawyer member of my ex-husband's family (we're all still on good terms) explained things properly, and why I needed to get myself included if I were to be able to carry on leading my mother's care. Oops - did I feel like an idiot or what. I tried to get a parallel POA organised for Health & Welfare - my sister wasn't happy but couldn't prevent me - but although my mother does trust me to look after her interests and was able to fill in the forms with help, and although she still has a reasonably complete understanding in general, there was no way that she could get her tired head around the real nature of the legal document she'd have been signing. Maybe less scrupulous daughters and professionals would have cut a corner or two, and maybe the end might even have justified the means, but mother's family doctor and I were in complete agreement that she didn't truly understand what she was doing and we should not proceed with the Health & Welfare POA for that reason alone.
Sadly - I often think, because we could definitely use some American upbeatness - we're not in the USA, we're in the UK; but most of the relevant laws, systems, processes - and problems! - are essentially the same. Euthanasia is outright illegal here, thank God, and will be for the foreseeable future; but there's the law, and then there's practical reality; and for all sorts of reasons - some good, some deplorable - the two don't necessarily match up.
I do not for one second suggest that my siblings, who love their mother and are decent law-abiding citizens, would do anything to hasten my mother's end. What I mean is, that they'd be readier to "let her slip away" than I would; partly because they'd call it "nature taking its course" and partly because they don't rate her quality of life as highly as I do. They're measuring it against normal healthy adulthood, not against normal extreme age, because they're not comfortable with very elderly people and haven't spent much time deliberately in their company.
Well, I don't believe in heroic medicine either: I wouldn't dream of prolonging my mother's life artificially, pointlessly and onerously to her. But then again, neither would I be embarrassed to kick up a fuss if I weren't happy with her care or medical treatment; or accept a failure to investigate an illness and treat it if it's appropriate; or be content to accept a greater risk of falls than is absolutely unavoidable. "Nature taking its course" i.m.o. is often in reality a case of somebody falling down on their job.
We all went to see a combined residential, nursing and dementia care home that I'd chosen for respite care on Tuesday; and the visit went well - only one (okay, two) verbal confrontations with my sister and one (okay, two) "frank exchanges of view" with my (idiot) sister-in-law acting as my brother's stand-in. My sister has emailed me since to agree (big of her) that it would be okay for my mother to stay there for one week if she wants to. Big surprise, my mother doesn't want to - but that's another story.
Tomorrow we go to the place near my bro's home to look at their choice. My mother wants me to go too - "I trust your judgment" she said - or I'd keep out of the way. This residential care home has no nursing staff, describes itself as "ideal for the active elderly" and stops serving breakfast at eight o' clock sharp. It's also a bit (10% or so) cheaper, I wonder why. You're right: I must try to keep an open mind. HAVE MY SIBLINGS EVEN MET MY MOTHER???
I am going to stick labels reading "Would mother like to spend one week here?" on my left wrist and "Can these people take care of mother safely?" on my right wrist before we set off in the morning; and refer to them whenever conversation wanders off the point and my heart rate goes over 140 bpm. That way I hope to avoid punching anybody - or, more seriously, upsetting my mother with a family squabble. Mother is excited about the trip because a) she'll see my brother and b) she thinks she'll get her Christmas shopping done. Oh boy.
Wish me luck! And I'm calling the Office of the Public Guardian for advice about the POA situation right now.
Best of luck
L
You don't say that your mother has cognitive issues. She can change POA anytime she wants to. Why doesn't she simply give that authority to you? Then you find a good place for respite care and you pay for it with her funds.
This seems so easy and obvious that I am certain I am missing some critical elements. Please fill in the gaps why this would not work. And then maybe we can brainstorm some more.