Legalities

My parents, because of my dad, were woefully unprepared for the legalities of aging.  They did not have a trust, nor a will, and none of us had power of attorney to act on their behalf for anything.  This was not because we did not want to get it done, but because we couldn’t get Dad to cooperate.  He still has no will (the lawyer quit on him because he wouldn’t cooperate).  We only have a DPOA because APS come in for a year and twisted his arm, though he did revoke it at one very important bank, with the help of one very unethical hired caregiver.

However, even with us having a POA, my dad is still legally able to act on his own behalf, unless we go to court and get a court order to be his guardians and not allow him to make these decisions because he is not competent.  We have been unwilling to do that, because of the fight and the rift this would cause, as well as the expense.  We also have previously asked his PCP for note and she wanted the full neurological workup, which my dad would not do.  In fact, getting him to any doctor’s appointment is very difficult, particularly with his heightened paranoia.  We have been legally stuck, trying to manage however we can.

I believe, that we need two doctors to sign non-competency.  I need to revisit that now.

In June, we had an appointment with Dad’s vascular surgeon.  Dad has a growing abdominal aneurysm which, in a healthy young individual, would need to be operated on.  However, Dad is a terrible candidate for surgery, which he doesn’t understand.  For years, he has been unable to make proper evaluations and decisions, including for healthcare.  Finally, in June in the middle of the appointment with the surgeon, the doctor turned to me, and said, “Oh, there’s no competence here.”  Yep, finally, we have a doctor willing to say this out loud.  So, this is now noted in Dad’s record, also that he is not a candidate for this surgery, even if the aneurysm bursts (which was agreed upon between the doctor, Sister and I).

Dad actually had an appointment with his PCP the other day.  When Sister went to pick him up, he talked about not being able to get any sleep because someone kept calling all night, and he said they kept singing itsy bitsy teeny weeny yellow polka dot bikini (there were no calls on his phone log on the website).  He kicked my sister out of the appointment, but we believe he had similar incoherency when talking with his PCP.  My sister asked the doctor to make good notes, and the doctor seemed to understand what was meant by that, so I am looking forward to getting the notes from that appointment.

With Mom’s dementia, she welcomed help, she mostly trusted us, and even though she had fears, they were not fears of us.  This mirrored how we interacted with her throughout her lifetime.  With Dad’s dementia, his paranoia is overwhelming, and his hallucinations are more damaging.  He imagines terrible things about us and what we are doing.  Being able to manage things for him, and to act on his behalf, has taken up so much of our energy, and he has made things so difficult.

Everyone should ensure that their loved ones are not in this position should something happen to them, please have your affairs in order – who is going to take care and advocate for you, and do they have the authority to do this????

I follow the blog of Kay H. Bransford:  Dealing with Dementia (https://dealingwithdementia.wordpress.com/).   In addition to her insightful posts about the journey through dementia that she took with her parents, she discusses many important aspects of organizing information that will help people take care of you or your affairs.  I definitely recommend her blog.

I don’t know why he is so mean….

“I don’t know why he is so mean.”

Those were the first words that Mom said to me the other day, talking about my Dad, and they keep ringing in my ears.  But let me back up some….

After suffering too much neglect, and, frankly, abuse, from my father, for failing to get my mom care when she needed it, Mom went on a hunger strike.  She wouldn’t take her medicine for her infection, she wouldn’t eat, she wouldn’t drink, she wouldn’t speak much.  She was defying Dad in any way that she could in her limited state.  She refused to let him care for her ostomy bag, and things got really ugly between them.

After a discussion with the social worker from APS, it was clear that it was time to act without Dad on our team.  This is a big risk, since we risk losing his power of attorney, which means not only is our ability to care for Mom compromised, but our ability to ultimately care for Dad also becomes very difficult.  I took a day and moved some monies around so that my sister and I will have complete control over it.

My Mom’s doctor is pretty good, and thankfully we are able to handle a number of issues online.  After messaging that Mom isn’t eating and just wants to die, he referred her to Hospice.  The Calvary has arrived…..

We are overwhelmed trying to get everything in place, as well as me trying to manage the beginning of a new semester.  In one day I had seven messages from Hospice.  They are a wonderful team.  I have arranged for a caregiver to be there a short time most days, with the folks’ money.  We all still have to work on coordinating our resources, but life has just changed dramatically for both of my parents, for the better.

I was able to go see Mom for the first time since her new bed arrived.  The Chaplain was there, they had started their visit with him playing his guitar and Mom sang along with all the words I’m told, but now he was at the counter just chatting with Dad about WWII stuff (that is, before he started complaining about how much dumber some of us daughters are compared to another one – he is so ugly nowadays).  The hospice social worker arrived just before I did.

I found Mom sitting up and smiling in her new bed, she had just eaten something.  She was happy to see me, and very willingly took her medicine.  Out of the blue, she said to me, in a very sad voice, “I don’t know why he is so mean.”  We talked a bit about that, then strayed and talked a bit about her eyesight.  She has macular degeneration (different types in each eye), and I’m afraid she’s lost a lot more vision lately.  She was too defeated to be angry, but was clearly upset that Dad would get mad at her taking “all those pills”.  Yeah, those pills, the ones that the doctor has her on to preserve what little vision she had left.  That’s why she stopped taking all her vitamins – because Dad just got meaner and meaner about them … he has always been anti-pill, but he has been more assertive about it lately, from vitamins to pain meds.

It was like she was completely shut down, but now that she feels safer and more cared for, she can speak more freely.  Even in her confused state, there are some things that are very clear to her.  She must have some form of PTSD from the trauma that Dad has put her through.  I try not to think about this part too much, because it just breaks my heart.  I’m afraid that those are the words that I’ll remember when I think about Dad most of the time …. “I don’t know why he is so mean….”