This is my life with my 82 year old mother. My daughter, and others, have been telling me for quite a long time to "start writing it down". OK, so now I'm trying to take their collective advice. Firstly, to get through the everyday ups and downs, and to have a written journal to share with Mom's various therapists and doctors, and to keep family and friends up to date on what's going on. And by the way, I'm not a creative person, and I couldn't make up this shit if my life depended on it.
So, a little background may be in order... We are both widowed, my Dad died in June of '09, my husband in January of '06. My parents both insisted that they didn't need any help even while Dad was declining, about 2 years worth of suffering, Mom was "taking care of things". Not so much, important medical appointments were missed or they showed up on the wrong days, she nagged constantly at him, and he would contradict, ignore, and spite her. She would bitch more, they would argue and just went into free fall from that point. He became progressively weaker, she fell into a deep depression, and my brother and I stepped in to pick up the pieces. I left my full time job in the fall of '08 (in all honesty it was a shitty work environment) and moved back home. I took care of all of the day-to-day general stuff at the house, and started managing Dad's medical issues. John looked after the money and house repairs. Sylvia perked up and was free to do her social thing - church, ladies lunches, etc. I carted Dad to his various appointments, he had a few specialists (don't all of the elderly), needed blood transfusions, and for a month or two, special light therapy for his skin. Then she was diagnosed with breast cancer, had a partial mastectomy followed by radiation therapy when she had her first "meltdown". By that time Dad had been admitted and discharged from the hospital (for the first time), placed in a nursing home until he was strong enough to come back home. This happened twice, and additionally, he was in Hospice twice also before passing. That all occurred over a six month time period during which Syl had her own multitude of medical appointments, another meltdown in the middle of radiation therapy, psychiatrist, and experimenting with different meds to help the depression. Talk about a roller coaster ride...
That would bring us to end of June in '09 when Dad passed away at Hospice. She was so relieved that he was gone, publicly she would tell people that he was at peace and not suffering any more. Privately, she would tell me that she was soooooo happy not to have to deal with him any more, she never thought that he should have lived as long as he did, and it was all the hospital's fault because he was transfused during his last stay. She could "get on with her life" and do what ever she wanted to do now and not be tied down. All in all, we were able to have a relatively normal home life. She was doing pretty well on her meds and was able to drive herself around town. I still took her to all medical appointments which were still pretty numerous, but was able to start looking for a job in November or so. By then, her follow-up doctor appointments were finished for the year, things were calm and I was able to find a part time job in January, '10.
So much for now of the history. It is now May, 2011, my daughter says this sounds desperate at times... not really, I don't think, but frustrating certainly most of the time. Currently, she's in a 3 day a week talk therapy group at a local mental health facility, and is undergoing ECT (more on this later). Her moods run from manic (what we call outer space) to badly depressed, staying in bed for days at a time, not communicating, shitty in general. Today she's up and outside, it's a nice sunny day, relatively warm, and probably digging up dandelions in the lawn. Yesterday she was in bed all day, so this is a big improvement. She doesn't want to go out for Mother's Day brunch, says it's a bullshit holiday and the foods always lousy, on the other hand, she feels confined to the house and wants to get out... no pleasing her today, I guess.
We saw her primary doc 2 days ago, medically everything looks good. Her damn cholesterol is 143! Mentally and emotionally so-so. She loves this doctor and has seen him for at least twenty years, he's very good with her, patient and encouraging. She even put on make-up to go to the appointment, kinda looked like a transvestite Bozo the Clown. Usually she doesn't bother, wears clothes older than me (well practically), and don't try to get her to buy anything new! Heaven forbid she should spend any money when "these are good enough" and I'd feel differently about it if I had lived through the Depression! Ok, Mom, what ever you want to do (at the risk of offending bag ladies, that's how she dresses).
And (more background, I'm afraid) ECT or electroconvulsive therapy. You know, wires attached to the head and they shoot electricity into your brain. Doesn't this sound like fun? She was on a downward spiral last fall, talked about dying, nothing to live for etc. and ended up having a total breakdown (I'm sure that's not the correct term but it sums it up well) in mid December. It was scary, she was lying in bed, wouldn't talk or respond in any way to us (John was with me) but you could see her eyes moving really quickly behind her eyelids. Then she started to tremble, then shake rather violently. Called 911, they came and after a bit of a struggle got her to the emergency room, where she started fighting the nurses, refusing an IV, and became hysterical. Finally got some meds into her to calm her down, and after 7 hours in the ER got her into a specialized unit at the rear of the ER till the next morning when she was transfered to the geriatric psyche ward. She was there for a month, where they started new meds and ECT 3 times a week. And she was better (couldn't have been much worse) and was able to come home. She was like a new woman! A pleasure to be with, wanted to go out socializing, a little shopping, and see some people. We even planned a cruise for May, she was that much improved (can you see this biting me right in the ass?). ECT was continued on an out-patient basis one or 2 times a week for about a month then less frequently, but apparently not enough to maintain her and she ended up back in the hospital in early March for a week or so. She's now having on a maintenance regimen, about once a month, which seemed to be working until last weekend. Cruise is now 2 weeks away. She asks me yesterday, did I buy insurance? No, I replied, we discussed it and decided it was not necessary. Oh, boy, now she doesn't think she's up to going away, can I get the money back? Nope. You're going, I tell her and she is not pleased about it. (The good news is that I can change the name on her ticket!!! Any takers? lol)
We now take a few moments to share some "sylvia-isms", or, you said what Mom!!?? To a lady friend of more that 60 years, "why didn't you have them both done at the same time?" while talking about her cataract surgery. And to another woman (also a long time friend) with macular degeneration, "are you driving?". "I didn't have cancer", well I suppose that when you have dementia there are probably times when it works to your advantage. While in the psyche ward at the hospital, "you have to get me out of here, these people are all weird", ok Mom, you may have a point, but you're right up there with 'em. After group therapy one afternoon while driving home, "What's nine eleven? We were talking about it today in group, but I have no idea what it is." Again, forgetting a traumatic event. (As an aside, her therapist didn't realize she was clueless about the discussion; she can cover up her memory lapses well when she catches herself. However, mostly the words just fall out of her mount unimpeded.) "He was a bad alcoholic" talking about my father and in his defense, two points: he never missed work because of his drinking and he put up with Syl for 60 (yep, that's right) years. In her next breath, she's getting her daily glass (or 2 or 3, "I put a lot of ice in it") of wine at 3 o'clock (with Dr. Phil) and it doesn't occur to her that she also has a pattern of drinking, or is also an alcoholic.
It's Mother's Day, John and I are taking the clan out to dinner, including his mother-in-law, wife and their 2 kids. Yep, we talked her into going out, well mostly it was John, she will agree with him before me, even if we make the same suggestion (I call this phenomenon the sun shining out of his ass). Should be quite the experience, but it's a beautiful day here, the restaurant is on the Sound with gorgeous views, and I hear that they may be able to accommodate me with a caramel apple martini and Kettel on the rocks for John. Have a great Mother's Day doing what ever makes you happiest. For my eldest daughter, it was participating in her first triathlon at Disney in Florida. Better woman than me.
Well, it's now early Monday morning... Mother's Day didn't go exactly as planned, Syl bailed out on us at the last minute. She went back in bed after I brought her home from church, beginning to shut down emotionally. My son and daughter-in-law stopped by with their 18 month old baby and even that didn't cheer her up- she came down stairs to see them for about 5 minutes and then went back to hide in her bedroom. We all still went to dinner, and had a real nice time, food was fantastic, it was a pretty day on the water, absolutely no complaints. So when we stopped by after dinner, she was in bed, looked terrible, haunted... She says she's "all done", so now we're back to the place we were in December, or close to it. I'm concerned she'll be back in the hospital shortly, tremors have started again, noticed it driving her home from church yesterday. Little head bounces, almost like she's listening to music and keeping the beat. Hands were shaky last night and she appeared very weak, it was an effort just to partially sit up in bed to take her evening meds. I'll try to talk to her in a couple of hours and see if there's any improvement, and then call her therapist for advice.
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