A month ago yesterday my mother came home from the nursing home where she was having rehabilitation.
As usual in such situations, the nursing home gave very little warning that her Medicare coverage was being withdrawn because she had "stopped progressing" in her rehabilitation. There was a "family meeting" on a Friday and I was informed that she had to leave by the following Wednesday, March 24, and oh, by the way, she needs 24/7 care now.
I don't mean to be cranky about this; it is the way things work, and nursing homes can get in trouble with Medicare if they let a patient stay longer just because it isn't convenient for them to come home so soon.
Be that as it may, it basically gave me two business days to set up care for my mother and make arrangements for whatever she would need when she returned to her apartment.
Luckily, with the help of information supplied by the nursing home administrator, I was able to line up overnight care for my mother through an agency, and did receive all of the necessary equipment in time for her return to her studio apartment. She needs to be on oxygen, so that included an oxygen concentrator machine, as well as a wheelchair, a walker, and a hospital bed so her feet could be put up at night.
At first I had the overnight aides coming at 9 p.m. and leaving at 9 a.m., but that meant I had to rush over there by 9 a.m. every morning, seven days a week. If I wanted to get away for an hour here or there I had to get my long-suffering husband or my aunt (who luckily lives one floor above my mother) to come Mom-sit. I am so grateful to both of them for all their help. My husband has come over to Mom's apartment and made us all dinner or we've brought her to our house and had dinner together a number of times, and he is always ready and willing to lend a hand.
I eventually changed the aides' hours to 11 p.m. to 11 a.m., which gave me back my mornings, and hired another aide privately three evenings a week so I could escape by 7 p.m. for a more normal evening.
The rest of the time I've been spending with my mother. And I'm happy to report that mentally she has improved remarkably since she got out of the nursing home. It makes me realize how important it is that health coverage for seniors should include at-home care instead of only nursing home care.
No matter how good a nursing home may be (and the one she was at was lovely and the people couldn't have been nicer) it is still not the same as being in familiar surroundings. Some people do well in a nursing home, if they're naturally gregarious and enjoy having a lot of activity around them. My mother isn't one of them. She found the ongoing commotion confusing and the soap operas her roommate favored on television made her think people all around her were in terrible predicaments. Her roommate also watched the Catholic Mass on television and I'd come to visit my mother and she'd be expecting me to take her to church. So I'm so grateful she was able to come home and is getting back to her normal self. And I'm lucky I was able to retire just when my mother needed me.
However, I had no idea how all-consuming being a caregiver can be. I figured if I did the daytime care, I'd be able to sit and blog or play on Facebook or read a book, chatting occasionally with my mother and making her meals. No such luck. For one thing, my mother's eyesight has gotten too bad for her to read, so she is only able to watch (mostly listen to) television, so I feel kind of bad reading while she can't. The other reason is that just as I might be getting into something, either in a book or on the computer, Mom has a request..."Could you please put another pillow behind my back?" or "I need to go to the bathroom." She can walk by herself but needs help.
Sometimes she'll take a nap but inevitably just as I'm settling in to watch one of my own personal guilty pleasures (such as one of HGTV's home makeovers or a cooking show) she'll wake up and want to get up again.
Mom loves MSNBC and CNN so that's what's on most of the day. I am now more well-informed on political issues than I ever was before. And I'm grateful that she is into politics because we have that in common and now that she's coming around again mentally we can discuss the issues, and it's great.
But the only problem is these programs are all covering the same Big Stories every day, multiple times. One day they kept showing a speech by Sarah Palin campaigning for John McCain that nearly drove me insane. If I had to hear her screechy annoying voice once more I might have lost control. I finally had to switch to a public television station and watch a cooking show, much to my mother's dismay.
The other thing that takes up a lot of time is dealing with the comings and goings of the aides, and the visiting nurse who comes twice a week but I never know when until a half hour before when she calls to say she's on her way. Plus there was a physical therapist who came three times a week for the first month. And on top of that I had to get Mom to two different doctor appointments during this past month when she was still quite unsteady and needed the wheelchair.
At first I was doing fine with all of this, but then it started to wear on me and as my mother got better and I was no longer expecting her to die at any moment, I found myself getting cranky to her by the late afternoon, and then of course feeling really guilty about it.
I found the cocktail hour was getting earlier each day. I'd go home for an hour while my aunt sat with Mom and I would walk the dog and then sneak a glass of wine on the deck, sitting in the sun. Or I'd bring a bottle over to Mom's and have two or three glasses of wine while she'd have her evening sherry, which she is now able to enjoy once again. I'd get an evening off and go out with friends and drink way more than usual just to de-stress.
I started having trouble sleeping, waking up in the middle of the night confused, worrying about my mother, sometimes not even sure if I was in my own house after being at her apartment all day.
I finally realize what my problem is - I'm not good at being with anybody all day long. I was brought up as an only child and I need my alone time!
So I'm finally having some this weekend. I managed to get two aides to cover the daytime with my mother, and the usual overnight aides are covering the nights. And we headed off to our cabin in the Adirondacks for three nights.
On the way up Route 22 from Whitehall to our turnoff there was a large male turkey in the middle of the road, strutting his stuff, showing off for a modest female who was at the side of the road, studiously pretending to ignore him. We had to wait while he ambled off the road.
Then came the turn toward our cabin, and then we were going up the familiar gravel road. As we pulled into the property in the early twilight we saw our personal Great Horned Owl fly across the pond from one tree to another. Later that night we heard him calling in the woods.
This weekend was the first time we were able to get to the cabin since the first weekend in December, and we were pleased to find it just as we left it. No one broke in, no trees fell on it, and it didn't burn in our absence. Within a half hour of arriving, we had the propane flowing, the generator generating, the well pump pumping, and the water running.
We've managed to have beautiful weather even though at home it is now raining. Somehow we always manage to get lucky with the weather.
Ed's dad joined us on Saturday and he has been enjoying his own escape - from visiting the nursing home where Ed's mom is every day, twice a day. No matter how much you love someone, you need time away in order to get back to them again with your patience intact.
When I return to the "real world," I'll need to reconsider the care my mother is getting, as the expense is untenable. We will be getting her on Medicaid shortly, but it won't cover the amount of care she has been receiving.
Somehow there has to be a balance achieved between leaving her alone some of the time but not endangering her welfare. I don't know yet what that balance will be. As she has improved I think she may be able to stay alone at night but won't know until I stay there myself and see how she is.
Long-term care is another area of our health care system that desperately needs reform. As the Baby Boomers age, I am hoping our generation will take on this task because you know we will not be willing to go gentle into that good night without making some major changes in how we are treated on that last journey!
Naturally from my constant exposure to news programs over the past month, I have a lot of fodder for commentary here but first wanted to let you all know why my posts have been so few and far between.
I am incensed about the new immigration law in Arizona, am glad that President Obama will get to appoint another Supreme Court Justice, and have lots of other opinions on various subjects to share. Baxter too is waiting patiently to get his turn to blog, so either he or I will be back soon to do so!