On Caregiving…
Haven’t written in a long time, and that’s pretty indicative of my life. Mom spent the first half of 2010 in hospitals & skilled nursing facilities, but so much of my time was spent visiting her or worrying about her. The guilt I’d feel when I skipped a day or two was debilitating, but thankfully, unlike before, we reached out & relied on friends and family, who broke up our visits, etc. Still, it felt like I was always in the hospitals or feeling guilty for NOT being in the hospitals.
Since mid-summer, she’s been in and out of hospitals, with family & friends sharing the responsibility of 24-hour care. She - at times - resents the idea of needing a babysitter, but relents for our mental health. In the beginning, my sis & I shared the job of her regular IV antibiotics, so one of us had to be with her at least every six hours, for 1 to 3 hours at a stretch. That ended (with a hospital stay) but with her next return, organizing friends who were able to spend the night and ensuring no lapses eventually became too much for us & my sister arranged for Home Health Aides to be with her. We are lucky — mom still has some retirement savings to draw upon. I can’t imagine Betsy & me trying to cover her expenses while covering her care. She’s a newlywed who just bought a house - and I’m unemployed, with all my savings depleted. And people deal with this all over the country, in every town, in every state.
The last time we called 911, the ambulance took her to the nearest hospital & we couldn’t get her transferred to *her hospital*. After over a week, they wanted to send her to an LTACH (long term acute care hospital) and - aside from the fact that we didn’t agree that it was necessary OR advisable - we had to consider how much *hospital time* mom had left in her coverage - since she hadn’t been home long enough for it to build up again. Paying for a hospital stay out-of-pocket would eventually mean selling mom’s house or taking another mortgage — in this market.
And people deal with this every day. In every town. In every state.
We’re lucky. My sister works in a hospital system & has access to professionals who know about resources available to us. If we had known any of that when we first got mom’s diagnosis, I wouldn’t have burned through my own savings & retirement while caring for her post-surgery & during chemo. And I wouldn’t be unemployed, broke & broken. All the while, mourning for my mother, who could die at any time, except that she still holds onto life with both hands - digging her nails in for all she’s worth.
And I’m filled with self-loathing instead of self-pity, because I know that millions of people are dealing with this all over the world - and so many have it worse - with less support - and are dealing with it better.
And still I feel alone.
And know that millions of people are going through the exact same thing.
