Morgen here, just checking in. I’ve been off the radar for the last several weeks, (although I thought of you all every day!) but now I finally have a chance to sit down and write a bit.
Some of you know about my mother who lives with us and who has severe dementia. She is a retired teacher whose focus in teaching was working with/developing curriculum for advanced placement middle-schoolers. She taught Shakespeare and the Constitution, and when students left her class, they Knew. How. To. Write. a paper. Her students loved her. I still receive (well, she receives) letters from former students and their parents letting her know who they’ve become and thanking her for her influence.
She spent much of the last 20 years scheduling her year around traveling back to Minnesota to help care for her parents, specifically her own mother who also suffered from Alzheimer’s.
I think of it as a few years ago, but I guess time passes quickly. It’s been longer than that that I started to recognize my own mother’s “dotty” behavior. My son and I spent nearly every day with her, and although she still lived on her own in her own home, I was slow to recognize just how out of touch she had become. About three years ago I got a call from the Kirkland police. My mother was at a neighbor’s house afraid to go back to her own house because Dustin Hoffman was in her house trying to steal from her. (Dustin Hoffman WAS the cover photo/story of the AARP magazine that was on her coffee table.) She came home with us that night, and has been with us ever since. Until a few weeks ago she had had a very slow downward progression into dementia. She has been very physically active and able, but is completely incapable of caring for herself due to her cognitive deficits. One of the saddest things for me has been that I still do not know precisely when she stopped recognizing me as her daughter. I have figured out that it was likely sometime while she was still living on her own. It haunts me to this day.
Up until a few weeks ago our house resembled Bedlam. (The real Bedlam, not the adjective although I suppose that applies as well.) A 98lb mental-4 -year-old dominated the house causing destruction and havoc from one end to the other.
Then, quite literally overnight, there was a dramatic change in her behavior. Upon waking one Saturday morning she had lost her balance and coordination and whatever little ability she had to respond to others was gone. She was walking, but broke two lamps by walking into them. We knew something was terribly wrong and got her into the Urgent Care of her regular clinic/hospital immediately. 4 tests were ordered, but as she was uncooperative in removing her clothes to have the tests done, she was put into restraints and given a shot of Haldol to calm her down. It didn't work. It took 4 nurses and myself to get a hospital gown on her with her screaming and fighting every step of the way. They never did do the CAT scan or EKG because of her agitation, and due to the fact that she walked in under her own power (though unbalanced) they did not think she had had a stroke. The recommendation was for me to call her regular doc on Monday morning with an urgent request to get her in to be evaluated by the Geriatric Psych department. Uh huh.
We were certain she had had a stroke. She was exhibiting weakness on her right side and confusion that was not normal for her, but the weakness wasn’t pronounced enough for a droop on one side of her face, and as she has been unable to follow directions for some time, they couldn't do the typical evaluation of asking her to smile, or squeeze her hand, etc. But I was pretty damned sure it was a stroke.
On Monday morning when I called her regular doc we were told to get her to the emergency room right away. (Different hospital). There they were able to get the CAT scan and Ekg and other tests. The CAT scan ended up showing a large bleed on the left side of her brain, and a smaller bleed on the right side. (I'm still puzzled by this type of stroke; she has no history of high blood pressure and she hadn't fallen. And I am now horrified at what we put her through at Urgent Care when we first took her in on Saturday. I wonder now how much the ensuing fight with her over getting her into bed and a hospital gown must have spiked her BP and worsened the bleed.) Her enzyme levels also showed she had suffered a heart attack. The location and size of the bleed along with her present cognitive condition did not argue for surgery. The best advice we were given came from her neurosurgeon who recommended letting “nature take its course” with the likely outcome being her eventual death, sooner rather than later, as in a matter of hours or days, and while I had been sure she had had a stroke, I was completely broadsided by the prognosis.
I spent nearly a week in the hospital with her. This was the moment for which knitting was made! Endless hours of worry and sorrow with nothing to do but sit and wait. Bridgewater had one stitch on the needle just waiting for me to pick up and start the horseshoe border, but I knew I wouldn’t have the patience for anything that fiddly. I grabbed the beautiful periwinkle Rowan Felted Tweed out of which I had started the Churchmouse poncho which should have been perfect knitting, plain old stockinette, no thought required.
I knit about 6 stitches on it and wanted to throw it across the room. I. Couldn't. Knit. It just wasn’t the distraction I needed and I am still kind of flabbergasted at that.
As it turned out, my Mum stabilized enough for them to recommend hospice and I chose to have her at home. She is technically in hospice right now. But as with my gut feeling early on that she had had a stroke, my gut feeling now is that this is her new normal, and that she is not checking out any time soon. Every doctor and nurse is telling me otherwise. To be fair, they have had much more experience and knowledge about strokes and end-of-life conditions than I have had. But I know her, and much much better than they do. She is tiny, but she is tougher than steel and she has the longevity genes of both of her parents who lived well into their 90’s. (She’ll be 76 in a week or so.) She is at much higher risk for another stroke, and I realize aspiration pneumonia is the other great fear, but she has a good appetite (must be spoon-fed and only pureed foods) and she must remain in bed or in her wheel chair due to her balance issues. She is now a 98 lb 2 year old. “No” is her favorite word, and like a 2 year old she has no understanding of what the word means. She has much nervous energy, but no balance, so keeping her in bed or her chair is the constant battle.
There ARE rays of sunshine however.
I am slowly reclaiming my house. I no longer need a chatelaine of keys to get from one end of the house to the other. Locks are coming off the doors and my pretty things I love to look at are slowly coming back out onto the shelves. The house is quiet again and I haven’t been called names in weeks. I haven’t had things thrown at me. She is so much calmer now, and instead of Bedlam, this is simply becoming a house where a family lives, one of whom has a handicap. The physical work is much harder, but the environment is so much nicer.
Life is what it is. And it is good.