healthcare, we have a problem. #4 (epilogue)

February 8, 2013 | 6:00 am

Part one of this saga is here.

Part two of this saga is here.

Part three of this saga is here.

So, yeah. With breathtaking speed, a grenade in the form of pneumonia was thrown into the lives of John and me, and it changed everything.

My family got down to business. A sister, a brother, a cousin, a sis-in-law and I Skyped for two hours a couple days after the health-grenade was lobbed. We picked my sister-in-law’s brain completely (who is a nurse and hospital administrator); we brainstormed and we strategized. We made some hard decisions, we got on the same page. They continue to be a sounding board, and are willing to take on whatever tasks they can handle remotely. It’s not like they weren’t available before, but there’s nothing like a crisis like this to make a family sink or swim. And swim we did.

I articulated and fulfilled my needs. Up to now, I had been slowly adjusting my availability to John as his care needs increased, even though it was impacting my work and personal life. With John’s health crisis, I could really see that I could not handle what I thought I was handling. I made use of a caregiver resource agency; I not only was empowered to identify and ask for what I needed, but I also was given info and resources that got me on the right path. Still not quite there, but getting there.

I became even more cynical and skeptical about health care here. Not much to add to that, if you’ve been reading along.

Elder care advocacy is needed. Many people treat seniors like shit. Many other people accept and allow a culture that treat seniors like shit. I am going to help change that. I encourage you to to help, too. Before you know it, idiots will be screaming in our wrinkled faces. Should that be the title of my new book?

I cleaned house. I have three particularly difficult relationships that I needed to deal with:

  • The doctor. He has a horrible, loud, fake-jovial bedside manner. Years ago, he dismissed my concern’s about John’s dementia, neither recommending a neurologist nor medication. Recently, he misdiagnosed John’s illness and then he prescribed codeine, which led to John’s psychotic episode. My sister A found an MD who comes highly recommended, has much experience with geriatric care, and will officially be John’s new primary care physician next month.
  • The caregivers. I sort of tolerated the caregiving agency and caregiver that we had been using for the past two years, even though John nor I really liked them all that much. With John’s illness I spent a lot of time dealing with the caregiver and agency and really saw how completely unacceptable they were. I’m not going to go into details (it’s complicated), but I made a tough but necessary transition to a new agency who have many staff experienced with working with clients with memory issues. And they’re cheaper than the old agency.
  • The friend. He’s an old pal of John’s who handles John’s finances. He’s a very good and concerned friend, but he’s also a cheap, opinionated boor. We’ve wrangled a lot about John. His tight control of John’s limited resources was one of the factors that kept me from asking for enough care and services for John. That is, until the recent events pushed me past my limit. I made it clear that I need to be free to take care of John effectively and safely, and that means getting help whenever I need it. I think it took this crisis to finally make this friend realize that I’m not lazy nor indifferent nor stupid about John’s money or wellbeing. I now have significantly more outside support; it’s still not enough, but we’re getting there.

I am resolute yet fearful. I have been told by many people (including you) that John’s lucky to have me. He has no blood family, he never visualized or planned his future needs as a senior (except for the finances, which are barely okay). After my mom died in 2003, he just kind of lived in this fog of denial, hoping we wouldn’t make him move from the house we own, existing in this tiny, lonely orbit, until dementia descended. Even then, in the early stages, he just didn’t or couldn’t face the future.

Which of course makes me think about my own future. I don’t want to, nor can’t, live in a denial bubble like that. I don’t want to be 86, let alone 86 with dementia. But what will be my options if I do become needy? Financially, I have nothing for the future. Personally, I have no kids, my siblings are much older — who’s going to step in for me? Who’s going to be¬†my Becky? These are my dark, late-night thoughts. But, as the Boyf says, I have no crystal ball, I don’t know how everything’s going to turn out, so why worry? Oh, but I do. I do.

I’m no saint. I know that people like to say things like “you’re a saint” or “you’re so selfless” to me, which is very nice and I’m taking the comments in the spirit intended, but it’s not accurate. I moved in here because it was a mutually beneficial arrangement, that John was (and is) a pretty mild and agreeable person, and at the time, the caregiving was easy. I am not a natural caregiver, and I have been bad at it and fed up with it more times than I can count over the years. Then, when this health crisis came down, I got in over my head fast and had to deal because I had no choice. If I left, he would die, so I stayed.

At some point I’ll be proud of what I did and am doing but I am still in the thick of it, or at least trying to stay one half-step ahead. There’s just too damn much to do.

Blessing-counting time:

  • Coast Caregiver Resource Center — serves adults with cognitive disorders by helping those who care for them. I am so grateful to the Center’s Carolyn K, who keep me and my family, informed, supported and sane.
  • My brother Peter, his wife Pat, my sister Annie and cousin Sally — these are the family members that stepped up to listen, mediative, problem-solve and care. We worked together very well. This is a very, very lucky thing.
  • The friends that stepped up. I have to say, it wasn’t too many. But there’s a few who have come over and made me dinner, took me out for a drink, called me once or twice. I don’t have the personal support system here as I did in SF, that’s a fact. So, thanks to those of you who rallied ’round. I extend this thanks to my online friends too.
  • My boyfriend and his mom. She has been pinch-hitting like a champion since December, coming over to sit with John when I’ve been stuck without care, often being asked at the last minute. He’s been my escort and sweetie and makes me feel normal and lets me have fun even things are (oh I have to say it: literally) shitty.
  • My health, my flexible and forgiving boss, beer, movies, my iPad, roof over my head, love. The end.

2 Responses to “healthcare, we have a problem. #4 (epilogue)”

  1. leanne says:

    oh my word! cocktail shaken for you ANYtime in sf. communal old age living commence 2034? i will shake cocktails as long as i am able.

  2. Tamar says:

    Oh my god, Becky. What a freaking nightmare. I’m so sorry.