Well this post is not as deep and meaningful as the ones just before, in fact it will be rather rambling I think. I just feel like sharing something I was remembering today.
First, the background: I took care of my mom with Alzheimer's for 8 years, the last three with my new husband's huge help, and she died this winter. Mom and I and my son and then my husband went through the many diverse stages of Alzheimer's together, each new stage emerging unpredictably. I never had time really to reflect on the stages as we went through them because they kept changing and something completely new and alarming was always happening and there were new things to learn for the new stages as the old things weren't needed anymore. It seems now only months after the funeral am I able to reflect in ways I could not before.
These new stages offered ever-changing new challenges - kind of like a baby growing up, a toddler, all the different stages, what worked before doesn't work now, and you need to understand your child's new developing needs and have new strategies and responses, except its all in reverse.
In the final five months beginning with when she forgot how to stand and walk suddenly one day in September, thus beginning hospice stage, which included (seemingly) ever-present and ever-changing hospice staff in and out of the house (one birthed her baby, another changed careers...) and each new one needed re-informing and re-discussing all that had already been exhaustively discussed... I remember it as months of excessive talking in the house, constant ad nauseum talk about the SAME things - most often discussion the cleanup and practical side of her daily care and changing, and then there were the constant microscopic examinations and discussions about what might be the possible beginnings of bedsores (had the pink spot increased?) (which never did develop for all the talk), really minuscule details always discussed and I always felt were unnecessary because they did not accomplish anything, in reality we had to do the same things all the time and I preferred to just do them, not discuss them (but I would walk away when we got deep into the same discussion and my husband was perfectly willing to carry on these conversation for a long, long time and i was thankful and thus dispensed such discussions primarily to him, though I still had to hear them, but at least from another room) but they always discussed the same things. The answers to my real concerns - particularly how she was wasting away because she did not eat or drink enough, were the things that the seem, as hospice workers, to be considered unimportant, and I got more help on the internet for that, after they left. I was grateful for the help and the professional input they gave but it seemed to stretch out for more time than necessary, and came with the cost of an interruption of the privacy I cherish, and a peaceful private home with just my husband's presence. Those months around here felt circus-like. Like Grand Central Station to me.
(A good memory of this winter is we had a huge snow storm and the modest new electric snowblower I bought my husband for Christmas is not designed to handle very deep, very heavy snow. And though the hospice workers could park on the street, it was a daunting, seemingly impossible walk up the rather long uphill driveway to the house. So I was passionately persuading my husband to leave it alone rather shovel at the heavy snow, and instead just wait for it to go down in the coming warmer days, especially because I saw another neighbor carried out in an ambulance after she took on major driveway snow earlier this winter. Well our across the street neighbor has a huge gas-powered blower that can handle very heavy snows, and he knew about our rounds of workers coming to the house, and he came over and snow-blowed a perfect path all the way up the driveway so they could come through. What a surprise and a blessing.
But the circus stage is possibly better stages like the ones which felt like I lived in a crazy-house, that no one would believe or understand. And the rare times I did complain, just to put into words some frustration, for the relief of it, people who had not walked these shoes felt the need to advise, and it felt patronizing as if we could not/had not been able to think for ourselves these ordinary things we of course had considered from every single angle. It wore me out to then be in the position of having to explain the TONS of thought we had already put into these same suggestions and what we had been through to arrive where we were.
Then Mom died and all of the sudden the privacy and peace was back, but leaving a hole. A person-sized hole in this world is a huge one. Yes, even after years of being incoherent and rarely showing signs of recognizing anyone and being virtually unable to do anything for herself and repeating the same things day after day, all day. Yes, there was some relief but came the sad presence of this new ever-present hole. Suddenly over was this crazy life I lived that most people did not know I was living and if they did know they still could not imagine what it was like, because I wasn't able to explain it, I just did it.
Sometime into this life I began to spend some years here writing a lot because of interest in Socionics, as well as a desire to be a part of this discussion community. A lot of time because I was home a lot and the computer was always nearby.
(I am now working toward a different future. Its a work in progress).
Well, here is my
Random past event which I happened to be remembering today, reminding me of how bizarre and strange some of the past stages with Mom were, so different from the final stages. This one had a strange but happy ending that makes my heart feel light to remember it.
I was home on a Saturday, my son probably away for a long morning of wrestling practice, and after my work week (which included getting my Mom to adult day care before and after so I could work (I have no idea how this compares to taking your child to day care since I never did that but this was challenging) and I needed and looked forward to a peaceful morning at home, to take care of necessary things around the house, un-rushed and quiet.
I was on the main floor and so was Mom. It was before we finally saw the need to gate off the kitchen Mom so loved (so bizarre and unsafe things still happened there) and Mom was fully mobile and this morning she was everywhere, pacing on this large main floor, through the entry hall, in one kitchen door and out the other, dining room, living room, with a pause for a brief sit in her chair before she popped up again and, heavily sighing, back through the living room, past the stairs and down the hall to the laundry and then her quarters, and then back out and around again. And wherever I was she would find me and ask me demanding questions, fussing, verbalizing I don't remember what, but she was irritated and angry and repetitive and sure of herself in tone though she made no sense, and it was hard to find any peace in this. Most frustrating to me is there seemed to be no basis for this extreme agitation. It seemed to come from nowhere.
But I was, in my mind, heroically patient, answering kindly and persisting with her til the matter was somewhat settled and she was somewhat satisfied and walked away - only to come back in one minute with the same exact angry accusation in the same exact words and tones as if nothing had been said and this was a completely new conversation. Same questions, same answers; I was doing everything I could do to placate - placating was my whole tone - and all morning she exhausted me with this repeated display of agitation and anger.
Then I realized there was a lull in her relentless rounds; she had never returned from the last trip to her quarters. So I crept there quietly and peeked in, and saw she was napping. Thank goodness! I then enjoyed a needed good hour of peace. But then I began to hear her up and moving again, and braced myself for her entrance and more rounds of the same.
"Hi, Mom" I said, in a properly patient voice, despite what I felt inside, when she appeared. And she greeted me with the most pleasant ever "Hello!" and a most friendly delighted laugh like she was greeting an old friend, and in her most gracious voice and pleasant smile she exclaimed, "Thank goodness YOU'RE here!" Then, she came in closer and said in a conspiratorial tone, "There was a most unpleasant girl here this morning! Asking all kinds of nosy questions! And she WOULDN'T LEAVE!"