MedWorm.com provides a medical RSS filtering service. Over 5000 RSS medical sources are combined and output via different filters. This feed contains the latest items from the 'Dementia Blues' source. Sat, 16 Aug 2008 14:41:19 +0100 http://martinac.blogspot.com/2007/06/absence-makes-heart-ive-been-absent.html "Absence Makes the Heart"I've been absent from this blog for three months, but amazingly, I still get notes and comments from people who read it and find help here. And that helps me - I thought I would just continue to let it go on and post whenever something struck me.Today, I visited my dad's grave with some flowers that are going to be placed in the small vase that I had installed on his crypt. (Don’t get me started on the cost of these things… $375 for a skinny, 7-inch vase!) I bought the vase because it was too sad to go there and see his bare stone - he deserves flowers. Ideally, he'd have a regular grave where I could plant stuff, really get in there and dig and get dirty with marigolds or petunias or something, but we're limited to artificial blooms. I called up my floral design training and made him a sweet little bouquet of white, yellow, and blue summer flowers.And I thanked my dad again for saving my childhood writing notebooks, the ones I threw away when I went off to college. Tonight is the premiere of my play Their Town at Pittsburgh Playwrights Theatre Company.I've been thinking about my dad a lot lately - his birthday was June 11, and last weekend, my paternal cousins invited me, my partner, my mom, and my sister's family to a big family picnic. Katie and I took my mom (M. couldn't go), and it was kind of a bittersweet thing, since the last time we'd been together was at my dad's funeral. My mom was very sad - not manipulative-sad, but just sad-sad, as in missing someone who should be there, but isn't. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=676675 Fri, 15 Jun 2007 15:12:00 +0100 676675 http://martinac.blogspot.com/2007/03/way-we-were-this-morning-i-read.html "The Way We Were"This morning I read an obituary for actress Betty Hutton, 86, in which her executor stated that he held off announcing her death until after she was buried because "she didn't want to be seen. She always felt that people were expecting a young, 20-year-old bouncing blonde and she didn't want to disappoint them [my emphasis]."This reminds me of something that my mother has often said over the course of her life, about relatives and friends who were sick and dying - that she didn't want to visit them because "I want to remember them the way they were - not like this." (The "this" was said with pity and something pretty close to revulsion.) When I was a teenager and a favorite uncle was in the hospital, riddled with cancer and very close to death, Mom thought I shouldn't go to visit him because "he'd want you to remember him the way he was." To my credit, I insisted on visiting and didn't buy the lame "way he was" rationale. This same thing happened again a few years later, when a favorite aunt of mine was at the end of life.Mom's "way they were" contention has always struck me as pathetic and self-centered - it's really not about the person who's dying at all, but about how the visitor will feel seeing them. I would not have wanted to miss my dad's final weeks, in which, even though thin and frail, he was still Dad, just in a different stage of his life. How sad to believe that there's no good reason to continue participating in people's lives when they're at an end. Yet that's what our culture teaches us - and what is at the heart of the abysmal state of end-of-life care in this country. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513078 Wed, 14 Mar 2007 13:53:00 +0100 513078 http://martinac.blogspot.com/2007/03/shame-on-forbes-heres-important-post-by.html "Shame on Forbes"Here's an important post by my blogging buddy Mona, exposing a revolting Forbes.com series of "articles" on starting up and running a senior living facility: read her astute assessment here.If this ticks you off (and it should), write to Forbes.com and let them know, and also ask them to try running a real piece of journalism on the growing costs and problems of long-term care in this country, instead of this insensitive and poorly researched drivel. Just scroll down to the "comments" section of the article to leave your thoughts. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513079 Tue, 13 Mar 2007 17:30:00 +0100 513079 http://martinac.blogspot.com/2007/03/visit-1.html "Visit 1.0" I visited my mom yesterday for the first time since she went into the assisted living residence last Monday. Right after lunch, I found her in her cute room, getting spruced up for whatever activity was next. (She wasn't sure, but the schedule told us it was Charades in the Sunroom.) I brought her a primrose plant and some chocolate as a peace offering, as I expected her to lash into me for "abandoning" her. But she was amazingly calm and welcoming, and we talked a little, then went to Charades together. Try to imagine a dozen dementia-lite octogenarians, some in walkers or with canes, doing their best to play a pantomime game. On top of the obvious challenges, the activity person had inexplicably chosen to play "Holiday Charades," forcing the residents to find ways to act out difficult songs like "God Rest Ye Merry, Gentleman." Needless to say, it was not a very successful game, and Mom wanted to leave early. On our way back to her room, we ran into a resident I met about two weeks ago, a very artistic and hobby-oriented woman who has a Victorian dollhouse in her room that she built herself. My mom was impressed and intrigued, but shy about staying to visit on her own, so we sat for a while together and chatted with her new friend. She needs to get the hang of the "visiting" thing, which is very foreign to her. Overall, I give this initial visit about a B+. There was absolutely no guilt-tripping, not even the slightest hint that I had "done" something to her that I must now undo or face her fury. Oh, she got a little teary-eyed and clingy when it was time for me to go. But she sometimes did that when I visited her in her home, too. It's not really a sign of missing me, the Paula of today - my mother has never known or understood me as an adult. Rather, it always struck me as her sadness that I had grown up, that she had lost her baby. Indeed, one of my mom's favorite sayings has always been, "I wish I could have given you a shot when you were 2, so you never grew up!" An interesting comment that tells you a lot about her - the so-called "terrible 2's" are when children really start to develop a self, and my mom was never too interested in her daughters as people separate from her. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513080 Sun, 11 Mar 2007 19:24:00 +0100 513080 http://martinac.blogspot.com/2007/03/shes-there-part-2-my-mother-had-good.html "She's There…, Part 2"My mother had a good day yesterday, according to a report from my oldest sister C. She attended a musical performance by a local high school group, then had dinner at her assigned table, and finally - the part that really stunned me - "visited with her neighbor."In the 50-plus years of our relationship, I have never known my mother to "visit with her neighbor." When I was growing up, our next-door neighbor, Mrs. G., occasionally invited Mom over for coffee during the day, but she always declined. Or Mrs. G. would spot Mom watering plants in the back yard and try to engage her in small talk. Later, Mom would click her tongue and complain to us, "Doesn't she have work to do?" Likewise, women she knew from volunteering at my school's cafeteria tried to coax her out for lunch or other activities, but Mom took the term "housewife" quite literally.Now Mom never worked outside the home, so maybe she didn't understand that working people do indeed take breaks. In fact, the work environment is often quite social; it's something I actually miss in working out of a home office. I still have contact with co-workers from a job I held 20 years ago.At my dad's viewing at the funeral home, one of his former colleagues - they worked together in a small tool-and-die shop, with about five or six other guys - came up to me and introduced himself. "Your dad was a lot of fun to work with!" he said, and I thanked him for telling me that. I mostly thought of my dad as no-nonsense, but that statement gave me a glimpse into him as a congenial co-worker.I know that the quality of Mom's days will vary, but for now, at least, she has made an effort to be social. "She sounded great!!!!" my sister typed, with multiple exclamation points. Here's to many more days like that. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513081 Wed, 07 Mar 2007 20:28:00 +0100 513081 http://martinac.blogspot.com/2007/03/shes-there.html "She's There..."My mom had her first day and night at assisted living yesterday.Given her mental condition and behavior - she acts like a little girl most of the time - it was very similar to taking a child to the first day of school and having to leave her, even though she cries and throws a tantrum and begs to go home. But you leave her there anyway, because she has to go to school, and you know she'll eventually adjust, make friends, find her place. (I can't take credit for this very apt analogy, since I don't have any children; my sister M., who sent two kids to school, came up with it.)Needless to say, it was an awful day, starting at 9 a.m., when my sister and I arrived to help my mother take a sponge bath and get dressed. To my surprise, Mom was half-prepared to go - she had packed her toiletry case herself, and had made an attempt to set her hair. She was, it seemed, somewhat resigned to going; but later, she manipulated in every way that she could imagine, including being abusive at times - for example, accusing us both of "not caring anything" about her; asking if I was taking her Social Security checks and her house; and phoning M. last night to announce "I hate you for this!" and hanging up. I got mildly drunk at dinner last night - because I don't drink much or often, it only took one and a half beers.Mom's abuse, I want to be clear, is not due to dementia; it's the way she always was, really, but now it's ramped up. And it does not make either of us want to go back anytime soon. Indeed, the staff suggested that we give it until the weekend, and make our visits very brief. They were very supportive, and assured us that many people have a difficult transition.Actually, I suspect that Mom is acting fine with the folks there - yesterday, she was docile with the nurse and social worker, friendly to the other residents. She saved her wrath and whining for us. At one point, I was standing outside the activity room door, watching her observe the post-lunch bowling match. She seemed interested in what was going on, and was even smiling faintly. Then, the minute I entered the room, she became sulky and placed her hands over her face.I hold in my head and heart that this was the right thing to do, although my sisters are still acting up in their own ways. During the bowling match, M. whispered to me, "Maybe she doesn't belong here," because a couple of the people were physically challenged and my mom isn't. But, I pointed out, many of the people in walkers still have all their faculties; they don't act like they're 5 or 6. Then later that night, M. fretted that we had not done enough to explore how to keep her at home. I got understandably angry, since I feel I have done the most I could possibly do for my parents, whom I didn't even have a good relationship with. My mother is in an excellent facility that will even let her stay when her money runs out - she is literally set for the rest of her life, in a clean, safe environment.My other sister, C., wrote to me today - the email equivalent of wringing her hands - talking about taking my mother out of the facility. She had called my mother last night and, of course, Mom was crying. I wrote C. a polite but firm note reminding her that there is an adjustment period and that our mother was staying put. And then I related the story to Katie, letting out a bunch of obscenities. It felt good; Katie and I laughed.I can understand completely why people stop talking to their siblings. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513082 Tue, 06 Mar 2007 16:13:00 +0100 513082 http://martinac.blogspot.com/2007/03/things-in-my-mothers-dresser-when-my.html "Things in My Mother's Dresser"When my sister was emptying out my mother's dresser in preparation for moving it to the assisted living residence, she found some touching things, some curious things.Some of the touching:1. Many of the cards we made for her when we were kids2. A yellowed "Dear Abby" column with the headline "Missing Mom in the Worst Way" (My mother's mother died when she was 10, suddenly, and I believe my mom has never really gotten over it - so this column would have resonated.)3. Two Kodak cameras - one older than I am that I had never seen before, and one that was aimed at me countless times when I was a child4. My mother's removable fur collars - I remember her so clearly dressing up for dancing on Saturday nights in form-fitting dresses, high heels, and coats with a narrow strip on leopard skin or mink on the collar. Endangered species aside, it was the fashion in the late '50s and early '60s, and she looked always looked "snazzy," as my dad would have said.Some of the curious:5. Oddly shaped fabric remnants, including the cut-out pieces of a dress that was never made6. Wrapping paper that's been around since my childhood7. A well-worn paperback copy of Peyton Place, hidden under her sweaters - now there's a story in itself. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513083 Sun, 04 Mar 2007 23:39:00 +0100 513083 http://martinac.blogspot.com/2007/03/more-assisted-living-giant-hurdle-after.html "More Assisted Living"Giant hurdle: After packing last night, today we moved my mother's furniture and possessions into her room at Westminster Place and set them up. She herself goes to stay on Monday morning.It's been a jam-packed couple of days, with Mom alternately sobbing, seemingly uncontrollably, and then swiftly snapping out of it, a bit of a Jekyll-and-Hyde transformation. She has also been uncharacteristically eating a lot, probably out of nervousness at seeing some of her things packed up. This morning, she ate a bowl of cereal at 9:30, then a ham and cheese sandwich a little after 11:00, then a hard-boiled egg sandwich and an oatmeal bar an hour after that. We didn't stop her - eating kept her occupied while we were getting everything squared away for "Dudes Who Move," the two young men I hired to transport her items.There has been plenty of manipulation, as we expected. Mom decided to bring a framed photo of her and my dad from about 9 years ago, surrounded by my oldest sister C., her kids and grandchild, because "that's the whole family - that's everybody." M. and I are bad daughters, so we don't get included in "everybody" - my mother actually told C. on the phone that we were "throwing" her out of her home. Last night, my mother said to me, "This is the worst day of my life!" and then told M. the same thing today.What a curious statement for her to make, I thought, given that her husband of 63 years died just four months ago! Strangely, she only talks about the house in terms of herself - "This is my home! This is the only home I've ever known!" (which is not even true). As if my dad never existed in it with her, although it bears so much of his mark - the landscaping; the kidney-shaped patio; the knotty pine game room; the driveway made of bricks from the neighborhood where he grew up. In the game room today I spotted a book of his I'd never seen, obviously something he used at work, titled simply Tool & Die Manual.Tomorrow, I will put the finishing touches on Mom's room, trying to make it as inviting as possible. I don't know what will happen on Monday. We bring her in the morning, and the social worker encouraged us to stay for lunch. I do know that in the evening, Katie and are going out for the baddest-for-us dinner we could think of - hot dogs and beer at our neighborhood joint. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513084 Sat, 03 Mar 2007 23:21:00 +0100 513084 http://martinac.blogspot.com/2007/02/assisted-living-here-we-come-my-mom-has.html "Assisted Living, Here We Come?"My mom has been accepted into a very good, religious-affiliated assisted living facility here, and there is a nice room available for her - if she moves now. This is, of course, pretty sudden - my sister and I took her there for evaluation and tour just this week, and now it's looking as if she may be living there by March 5 or 6. The weight of making this huge decision rides on my back like a small, squirmy child - which is, by the way, how my mother acts most of the time now.The facility tour went amazingly well - way beyond our expectations. Mom actually opted to stay for lunch, and she lit up when talking to some of the residents and watching them engaged in activities, like bowling (something she and my dad liked to do). She seemed very interested in the facility's intergenerational programming - they have a daycare center on-site, and some residents read to the little kids one day a week. This more social side of Mom is something my sister and I haven't seen in a long time, one that she has long suppressed. Gee, other people aren't so bad after all!A funny, telling story about our visit: My mom had a bad case of shingles this winter, and still has some pain from it in her right shoulder, which she complains about to us and her home-care workers constantly. But at the assisted living facility, she seemed to forget all about it. Then, during lunch, she suddenly remembered she was supposed to be in pain, and grabbed at her left shoulder - the wrong one! Then she crossed her arms in front of her in confusion: Hm, which shoulder hurts, anyway?Still, while she admitted that the place was very nice, on the ride home Mom began talking once again about asking an 85-year-old friend of hers to move into her house with her - a woman with mobility issues, whose own son is trying to get her into a facility.But we are moving forward, despite Mom's objections. I wish she could make the choice herself, but she doesn't have the reasoning power to do that anymore. The social worker told us she thought Mom would do very well in assisted living, once she allowed herself to enjoy the activities and the company of other people. But she also told us to expect quite a bit of manipulation - one of my mother's fortes.On top of all this stress, my sisters have both been acting up, in different ways. M. has been in denial ("Maybe we can we keep her in the house one more year, and she'll make the decision herself?"). C. has been unhelpful as always, not surprisingly opting out of coming in for the move and disrupting her life in any way. ("I'll come in May, after my trip to Disneyland, and after she's all calmed down.") I feel very alone sometimes. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513085 Sat, 24 Feb 2007 16:18:00 +0100 513085 http://martinac.blogspot.com/2007/01/new-blog-as-part-of-my-new-years.html New Blog!As part of my New Year's resolutions, I have started a new blog, unrelated to caretaking or dementia or my parents in any way. It's a history/travel site called "The Queerest Places," based on a book I published a decade ago, which is now out of print. I have long thought of turning the idea into a website, and now blogging makes it possible to do so quickly and easily. Check it out, for a change of pace! (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513086 Fri, 05 Jan 2007 15:04:00 +0100 513086 http://martinac.blogspot.com/2006/12/annus-horribilis-goodbye-to-2006-i.html "Annus Horribilis"Goodbye to 2006 - I can't wait to see you go!As a parting shot, the year offered up a nasty stomach bug that made me sick for Christmas, knocked me flat and coursed its way through my body, settling in my already tormented muscles. After weeks of exercises and treatments that made me much stronger, I was in an instant tossed back to being "Crip Girl," as my sister M. called me this fall. A very painful session with the myofascial trigger point therapist yesterday offered minimal relief.So, once again, I have to watch every move I make - to think about how long I'm sitting, and in what kind of chair; to consider how I swing my legs out of bed. Yesterday afternoon, a too-quick dive toward my dog, who, of course, sniffed out a disgusting bit of Christmas turkey in the alley behind our house, forced me to cut short our walk and return home to stretch out the pain.I look back over what I've just written, and I sound pathetic. Many, many people - some far younger than I - face debilitating pain, finding any way they can to deal with it. I read recently that 300,000 surgeries for sciatica-related problems are performed in this country every year. 300,000! No wonder the first company I applied to for an individual health insurance policy when we moved here turned me down flat. I honestly reported that I'd been to a chiropractor for what was then a mild case of sciatica, and they saw thousands of dollars (theirs) making their way into some orthopedic surgeon's pocket.Still, rationality doesn't help - it's profoundly upsetting, at 52, to feel like your body's failing you.I'm typing as I stand, waiting for the pain to ease. I need to remember that I was getting better, until the virus set me back, and to keep believing that this won't go on forever - that the rest of my life isn't going to look like this, and that one day, I'll be remembering 2006 as my "annus horribilis," in so many ways. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513087 Thu, 28 Dec 2006 17:29:00 +0100 513087 http://martinac.blogspot.com/2006/12/ho-ho-no-i-was-still-trying-to-muster.html "Ho Ho No!"I was still trying to muster up a bit of Christmas spirit - but then I began to think, why?The cemetery sent a "Getting Through the Holidays" sheet, with tips for making it through the season. I didn't really agree with "Avoid social events," but some of the others - about pampering yourself or openly acknowledging your loss - were helpful.Last night, I baked a batch of cookies, which was actually kind of soothing. The recipe for "Apricot Buttons" resembles my mother's wonderful thumbprint cookies of years gone by - I made them last year, too, but overbaked them. This year, they tasted, if not exactly like hers, pretty damn close. Someday when we sort through her house, we will probably find the actual recipe.Then today, I shuffled through old photos, looking for a vintage Christmas one to post here. This one is of me at four, in 1958.Christmas 1958 It's hard to imagine me asking for a fake mink stole and high heels, so maybe this gift was a Santa surprise. After all, my mom did think of me as her little doll, and this seems a bit Barbie like (although it was pre-Barbie; I probably got my first Barbie the following year). I don't remember wearing these items - I mean, come on, high heels at four? I do remember the toy bowling alley, though - tons of fun.Katie and I decided to visit my dad's grave on Christmas Eve - that was really the big celebration day in my family, more than Christmas itself even. That's when we decorated the tree, ate cookies, played the same records year after year (including my favorite, a collection of carols by the Sisters of Divine Providence - they were the nuns who ran my school), opened presents, and tried every year to get to midnight Mass but never made it. It just seems right somehow to visit my dad on that day. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513088 Fri, 22 Dec 2006 17:10:00 +0100 513088 http://martinac.blogspot.com/2006/12/back-in-e-e-e-r-my-oldest-sister-has.html "Back in the E-E-E-R"My oldest sister has been panicking from 2,000 miles away, because she calls my mom every morning and Mom often complains of being "dizzy." The lightheadedness usually goes away with a meal, but yesterday it didn't. Or maybe Mom only said she ate, but didn't. My niece, C.'s daughter, who used to work as an EMT, has urged us to get her checked for diabetes; but my mom had a thorough physical recently that found her in good physical shape.Yesterday, C. was in a more urgent mood than ever, leaving me frantic voice messages about my mom's supposed ill health. Then my mom's home-care worker also called (it's unclear if she had been enlisted by C.) in a red-alert mode - she feared my mom was having a stroke, as she was also complaining of "blurred vision" and pain in her arm.In situations like this, I can't rely on my experience of my mother as one of the biggest drama queens that ever lived. Her dementia, unfortunately, makes it impossible to know what's real pain and what's not, what's a current symptom and what's something she maybe felt a week ago. After all, last year she complained of a vague "bellyache," which could have just been constipation but turned out to be gallstones. And so we went to the ER.After six hours and lots of tests, the intrepid medical staff found nothing amiss with Mom - except the dementia, of course. Even her "blurred vision," when she was pressed to describe it, turned out to be a feeling of having some dirt in her eyes. Maybe she did have a speck of something in there… or maybe she was up roaming the house the night before and didn't sleep. Problem is, she doesn't remember.Earlier that day I had been feeling really sad about my father. I went for my monthly haircut, and my hairdresser asked me how my dad was doing. I had avoided talking about personal stuff with her last month, making neutral chit-chat instead, but I couldn't dodge such a direct question. Although I didn't cry in the salon, I burst into tears on the way to the car and sobbed all the way home.For the past few weeks, I've been feeling new anger at my mother, who turned me into her ally against my father when I was growing up. As a result, I harbored a lot of animosity toward him from the age of seven into my early 20s - which I regretted later in life, and feel especially ashamed of now that he's gone. Ironically, I was going to go with Katie to see the engraving on my dad's stone when the home-care worker called about my mom. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513089 Thu, 21 Dec 2006 17:49:00 +0100 513089 http://martinac.blogspot.com/2006/12/well-have-to-muddle-through-somehow.html "…We'll Have to Muddle Through Somehow"It's been almost two months since my dad died, and we're getting ready for the first Christmas without him.My family has had Christmas dinner at my house for the past two years in a row, and when I called my sister to ask her opinion about having it here again, she said, sadly, "Oh, I don't care." Last Christmas we had a very pleasant family dinner, although my dad's frailness took center stage. He couldn't walk up the front steps without help, and my brother-in-law and nephew had to practically carry him to the bathroom on the second floor. They all joked about it, but it was a heartrending sign that things were not going well for him. About six weeks later, he fell.So it has been a bit of an "I don't care" season for me, too - I bought almost no presents and the few I did were purchased in a perfunctory kind of way. Katie and I decided to get a new CD player as our joint present, and to have "experiences" - mine will be high tea at Sunnyledge, a historic landmark that's been turned into a B&B and tea room, and hers will be an evening tour of the new "Tropical Forest" wing of Phipps Conservatory. We did get a tree and decorate it, and she's a lithe, elegant addition to the house (see above).The cemetery associate called last week to inform me that my father's stone is now engraved with his name and dates, but I've put off going to visit it, even though the weather's been mild. The smallest things remind me of my dad, like cutting a pineapple, which I know how to do because I used to watch him do it when I was little.I read a fascinating story in Entertainment Weekly yesterday about the birth of the Christmas standard "Have Yourself a Merry Little Christmas" - a plaintive song I've always liked a lot, which really captures the bittersweet aspect of this holiday. The article was about the transformation of the song from its original version, with lyrics that sounded almost suicidal; to the Judy Garland version with that very true, melancholy line, "Until then, we'll have to muddle through somehow"; to Frank Sinatra's request that the line be changed to something happier: "Hang a shining star upon the highest bough." (See all the versions here.)So I've found myself playing the song a lot on the new sound system. And without my dad, we will indeed "muddle through somehow" this year. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513090 Sun, 17 Dec 2006 14:04:00 +0100 513090 http://martinac.blogspot.com/2006/12/no-other-choice-my-sister-m.html "No Other Choice"My sister M. and I have reopened the topic of my mom going to an assisted living facility. We reopened it first with each other, and then with her. Not in a "let's think about it" kind of way, which is our usual, tiptoeing mode; but in a "this is what has to happen, because there's no other choice" kind of way.When I talked to my mother at length about it the other day, I tried to be as caring as I could while at the same time staying firm and laying out facts - she plays around with the furnace controls, for example, and no longer knows how to use the gas stove. She is scared when she's by herself, and yet my sister's two-story house is unsafe for her because she starts "night-wandering" in the dark. Even when her medication is laid out in a pill-reminder box for the week, she occasionally takes two days' worth in one day because she has no idea if it's Tuesday or Saturday.And it's her obsessive behaviors that make us fearful she'll blow up the house and herself. She just can't leave something that's malfunctioning alone until one of us can get to her - she keeps trying and trying and trying, to the point of danger. She has a home-care worker for four hours a day, but really needs round-the-clock supervision.My mother's response to the assisted living conversation was to pull out all her manipulative wiles. Manipulation has always been her m.o., only now it's ramped up. She sat across the kitchen table from me, lowered her chin, sighed, and said in an almost inaudible baby voice, "I don't want to go to a home." Then she proposed either living with her 86-year-old friend Betty, also widowed this year, or moving to New Mexico to be with my oldest sister, C."C. wanted you to come for a visit," I reminded her, "but you refused. Twice. And she didn't mean it as a permanent thing. She travels a lot, and she can't be with you all the time - she has her own life."Another huge sigh. "Yes," my mother replied, in a tone bordering on annoyance, "everybody has their own life."My comeback was firm, not snippy. "That's right. Just like you had your life. Now the rest of us get to have ours. That seems fair."She agreed, "Oh, I know" - but, of course, she thinks it's immensely unfair. And would whether she had dementia or not.When I was leaving, she clung to me, crying and telling me she loved me - which to some of you may sound like a sweet moment, but was really more manipulation, trust me on this. I said I loved her, too - and that was exactly why M. and I wanted to find her a nice place to live with people her own age, where she could be taken care of and wouldn't have to worry. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513091 Fri, 15 Dec 2006 18:21:00 +0100 513091 http://martinac.blogspot.com/2006/12/change-line-written-by-deb-one-of-my.html "The 'Change'"A line written by Deb, one of my fellow caretaker/bloggers, has stayed with me since I read it last week: "So the medical researchers out there who are looking for a way to use that extra NIH grant money might consider studying the effects of menopause on middle-aged caregivers. There would be no shortage of participants, I imagine."It's cruel that so many of us are going through menopause at the exact same time that our parents need the most care. When my dad first fell last February, my period stopped for three months, and I had hot flashes and mood swings. I thought, with great delight: "This is it! The end!" and got ready to throw away my Tampax. But no such luck. My "little friend" was back in the spring - although, honestly, as a lesbian, I've never really needed this particular "friend." With it came sciatica-like symptoms that have gotten progressively worse, until recently, when I have actually felt disabled by burning pain down the side of my leg.I went to a chiropractor, a massage therapist, and a "talking-cure" therapist, in turn, and they all seemed to think my pain had its roots in the stress of caring for my parents. And I do think tension made it worse. But I also experienced the pain getting worse right before my period and then subsiding - so could it be related to hormones, I asked? Also, by its very nature, menopause is a stressful time - my mom took some supplement thingies called "Stress Tabs" to get through hers.Just last week, I decided to try one more alternative therapy before going to a medical doctor. (I've been nervous about going to an M.D. for this, since, in my experience, they mostly throw pills at you in desperation and/or suggest surgery.) I had been reading about "trigger points" - a term the chiropractor used - and how they can mimic the nerve pain of sciatica, but are really muscular in nature. And aha! "Trigger points" can be caused by hormonal changes.I had a 90-minute session with a myofascial trigger point therapist, a 70-something man who studied with the woman who actually invented the therapy - JFK's doctor. My therapist talked nonstop, which was a bit disconcerting; but since the treatment itself is painful - with pressure on the exact points that hurt like hell - and you can hear people screaming and moaning throughout the facility - I figure he talks a lot to try to calm his clients.After a rocky day-and-a-half following the treatment, I have now been pretty much pain-free for three days - knock on something. I don't remember being without pain, except for scattered days here and there, and certainly never for such a stretch of time. I will have follow-up sessions, and there's a regimen of stretching exercises to do several times every day. And I have to sit with a thin book under the right side of my butt for the rest of my life - so I'm sitting on classic plays like Our Town and The Crucible, hoping for inspiration via butt-osmosis.What a welcome change from the symptoms of "The Change," as my mother's generation so euphemistically referred to menopause. Oh, and by the way, my "little friend" has disappeared again - I hope this time for good. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513092 Tue, 05 Dec 2006 14:58:00 +0100 513092 http://martinac.blogspot.com/2006/11/just-hear-those-sleigh-bells-jinglin.html "Just Hear Those Sleigh Bells Jinglin'…"Today, my mother tried to enlist my help in putting up a Christmas wreath. Admittedly, I'm not the best choice for the job, having a bad back, but I agreed to see what I could do - all the while secretly planning on passing the job along to my brother-in-law.When I asked her where the wreath came from, my mother said she'd been saving it in the garage… since last year. A live wreath that my sister sent her exactly one year ago."It's dead, Mom," I said. "Believe me. We'll get you a fresh one.""No, no, it's still good!" she insisted. "It's so pretty. It looks good as new. Want to see?"I humored her and went to the garage, where she pulled the wreath out of the box it had been shipped in. I'd seen this box in the garage before, but assumed it was just that - an empty box.The wreath came away from its storage gray and brittle, little pieces falling off the minute I touched it, needles littering the floor."See?" my mom said. "It's still good.""Remember when you and Daddy used to get live Christmas trees?" I reminded her. "You didn't keep them for a whole year, did you? The most you ever kept them was a month or two. Well, wreaths are the same way.""But it looks good to me. If we just put it out in the fresh air--" She didn't finish, but the words "it'll come back to life" sort of hung there, unspoken.I couldn't keep repeating that it was dead - the word feels funny in my mouth; wrong somehow, even though my dad's been gone more than a month."Well, I don't really feel like Christmas anyway," she said, taking a step back into despair. My parents both loved Christmas, and our house was always filled with live greenery. Even last year, with my dad so unsteady on his feet, they managed to put up a wreath.No, I said - she deserves a fresh wreath, and we would get her one. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513093 Thu, 30 Nov 2006 22:25:00 +0100 513093 http://martinac.blogspot.com/2006/11/blog-post.html "...So Little Time"I realized with happiness today that I had not posted anything to this blog in 10 days - and with even greater happiness, that I had not missed doing so.It's not for want of subject matter. There is a lot to write about under the category of "Mom - Still Crazy After All These Years." My mother's in a deep, understandable grief that makes her think she's dying herself, and that causes her to call my sister M. and brother-in-law (who live closer than I do) at all hours of the day and night - including between 2 and 5 a.m.There's also fresh material under the category of "Clueless Siblings." Don't be surprised, dear reader, but my oldest sister did not take our mother to New Mexico - she decided that Mom didn't "want" to go, and that Mom, in fact, could use some alone time. Actually, C. left early, in a huff about something completely innocuous that M. said about grieving for our dad. "I have things to do," was C.'s parting shot to me when she announced she was jumping ship. Uh, like we don't?But I am trying to keep as detached as is possible in this situation - given, of course, that my mother has dementia, lives alone, refuses to leave her house, and lives in the same city as I do. Not an easy task, but I'm trying. I'm also trying to shed the identity of "parental caretaker," which I never wanted to begin with. I've laid out what I will and won't do, and M. is honoring it (C. is not). When M. tells me that, like me, she just can't do any more, I will step in again to revisit assisted living with her.And I honestly do feel kind of calm. My sciatica still rages at times, but I'm more worked up theses days about other things - finishing my play so there can be a staged reading; fighting with the county over our property taxes; getting a cavity filled. So much to worry about, so little time. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513094 Wed, 15 Nov 2006 23:52:00 +0100 513094 http://martinac.blogspot.com/2006/11/spook-weekend-after-my-dads-funeral-i.html "Spook"The weekend after my dad's funeral, I found myself - to quote Dustin Hoffman's character in Rain Man - "bookless." I always feel a little panicky when I have nothing good to read, so I set out for Barnes & Noble to find a novel - preferably something fat and engaging that would last a long time.After much finicky shelf-scouring, I had the choice narrowed down - The Jane Austen Book Club, which I've been skirting for a few months now, and something else that I've forgotten the title of. I decided to splurge and get both - not something I normally do, as there's a library so close, but hey, my dad had just died.Then, on my way to the checkout counter, I gave the "Paperback Favorites" table a final glance, and a nonfiction book called Spook, by science writer Mary Roach, grabbed my attention. "By the author of Stiff: The Curious Lives of Human Cadavers," the blurb on the cover read; that earlier book has also intrigued me, but I hadn't read it. Plus, there were tons of enthusiastic review quotes from reputable papers on Spook's cover, so I abandoned my fiction choices and went with it. Truth be told, what really sold me was the witty dedication: "For My Parents, Wherever They Are or Aren't."Clearly, I was looking for an answer to the Where is he? question that keeps crossing my mind. Once, while driving, I tried talking to him: "If you can hear this, Dad, could you see if you can get Mom to go to New Mexico with C.? M. and I really need a break."Spook didn't offer answers to those kinds of questions; it is, after all, a science book. Well, it's popular science - Roach writes for Salon.com and similar venues - so it's very chatty and jokey, with an odd amount of sex and bathroom humor thrown in to make you wonder if the author is really a 12-year-old boy. Sadly, there wasn't even one semi-inspiring story for mourners to hold on to. The text was filled with fake mediums, wacky people who believe you can weigh the soul, and scientists who get huge government grants to try to prove there's life after death - but, of course, never do.The most I got from Spook is that maybe there's a small burst of energy when people die. No one has proved it, but I found it a comforting idea nonetheless. That theory would speak to the fact that twice in the past, soon after people in my life died - my friend Steven and Katie's sister Mary - the lights in our New York apartment inexplicably turned on in the middle of the night. Now I'm waiting for my dad to work some electrical wonders, too. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513095 Mon, 06 Nov 2006 23:27:00 +0100 513095 http://martinac.blogspot.com/2006/11/cause-of-death-my-dads-death.html "Cause of Death"My dad's death certificate lists "Alzheimer's dementia" as his immediate cause of death, and "chronic renal insufficiency" as the secondary one. The inaccuracy of this bothers me. I was trained as a historian, taught to pay attention to minute details. In writing fiction and drama, I had to "un-learn" a lot of that training, shelve it in a drawer in my mind. After all, details in literature can be fudged for "art's sake."But sometimes, my "just the facts, ma'am" persona pops out again. And she says that this isn't literature, it's real life. My dad died, I believe, of the long-term complications of diabetes - renal failure being one of the biggies, heart failure near the top of the list, too. He never had a diagnosis of Alzheimer's, and indeed his mental deterioration seemed to fall into that vast valley called "… and other dementias" - related to chronic illness, rather than an illness in itself.There was never any talk of an autopsy, as my dad had been through so much with his body in the past nine months that it seemed cruel to do that to him for "research." Furthermore, he would not have wanted it.And I suppose the immediate cause of death doesn't matter now; it's kind of a "chicken or egg" question anyway. Diabetes set everything in motion, but dementia was, in a way, his undoing. After his first fall, he was learning to walk again, and we all expected him to be able to go home again - his brand-new walker was waiting for him. But then, in an instant, it was all over - in his demented state, he leaned too far out of his wheelchair and fell again, breaking his hip and requiring surgery that plunged him further into the fog of dementia. And although he still had moments of clarity in his last six months, he was never really the same.The doctor at the nursing home only saw my father after that second fall, so he never witnessed, as we did, the path of my father's descent. Dad must have just seemed like a classic Alzheimer's case. But in his obituary, we set the record somewhat straighter - we suggested contributions to the American Diabetes Association. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513096 Thu, 02 Nov 2006 14:31:00 +0100 513096 http://martinac.blogspot.com/2006/11/what-i-say-today-my-mother-says.html "What I Say"Today, my mother says - although yesterday she said differently - that she is not going to New Mexico, and now my sister is backing away from the plan.Mom's upset, C. says, and wants to stay in the house, which is all she has left of my father. C. says she felt the same way when 20 years ago, at 45, her husband died suddenly; she didn't want to travel anywhere or move from the house she'd shared with him. We have to abide by Mom's wishes, she says. Mom says she wants to stay in her own house and then maybe live at my house or M.'s on the weekends.What do I say? The woman has dementia, so comparing her to my sister, who was a young widow 20 years ago, is ridiculous. I also say this: The idea that my father's death is what's keeping my mother tied to the house doesn't hold water. It ignores the fact that Mom has been refusing to leave her house for more than an afternoon or evening for the past 10 years, long before dementia set in and my dad died.I also say that my mother cannot live at my house, not even on the weekends. This would wreak havoc with my emotional and physical health. Whether she can live at M.'s is debatable, and not for me to decide.Maybe she'll come to New Mexico later, C. says. If she doesn't go now, she never will, I say.And here's what I think - C. is getting cold feet. And who can blame her? My mother's dementia is worse; last week, she forgot who I was. She is emotionally about 10 years old now - the age when her mother died, leaving her an orphan. At the funeral home, relatives and family friends addressed her as "kid" or talked to her like she was a little girl."Daddy looks so peaceful," C. said at one point during my father's viewing. "Can we go wake him up?" my mother asked, with a coy smile.What I say is this: I can handle her finances; I can keep track of her meds. But my mother and I will never live together again. She needs full-time care, and I'm not the one who's going to give it. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513098 Wed, 01 Nov 2006 18:16:00 +0100 513098 http://martinac.blogspot.com/2006/10/free-my-fathers-death-prompted-my.html "Free"My father's death prompted my sisters and me to search through our own photographs and my mother's for images that we could post at his funeral home viewing. We found a good assortment that spanned his long life, from childhood right up until last Christmas at my house.Surprisingly, I also found a picture of myself that I didn't know existed - amazing, given that I used to pore over the family albums when I was young, and thought I knew every single snapshot that had ever been taken of me, flattering or not. ("What was it with you and hats?" my sister wondered, as we unearthed photo after photo of me in bizarre hats, dressed for church.)The forgotten photo shows me on a raft in a lake in Rhinelander, Wisconsin, where my sister C. and I vacationed with our Aunt Mary and Uncle Sam during the summer of 1962 - I was 7 years old (about to turn 8) and C. was 16. I remember other photographs from that trip vividly - especially one of me, standing next to my summer buddy LaRae, in a red baseball cap that my aunt let me choose at the local general store. Wisconsin, 1962 Who knew, though, that I had ever been brave enough to lie on a raft in the middle of a lake? Maybe I was in shallow water, but the shot doesn't suggest that. And what's so amazing to me is that I didn't know how to swim - in fact, I had a deathly fear of water, instilled in me early by my mom, who is terrified of water and dropped out of high school in her senior year to avoid having to pass the swimming test required of all public school students in Pittsburgh.Oddly enough, I had been talking recently in therapy about some of the fears my mom passed along to me; I was her little emotional sponge. As a consequence, I have never learned to swim, although I've tried several times, both in my teen years and in adulthood, and I finally at some point gave up.My Wisconsin summer has always been a sort of touchstone for me - until then, I had been a sickly, housebound kid; but that summer, free of my mother's over-protectiveness - my aunt was a very hands-off guardian - I put on weight, turned berry-brown, ran across the street without adult supervision, learned "where babies come from," chose my own hat… and, apparently, got into the lake on a raft. How cool is that? That was also about the time I started writing fiction.I have the photo sitting on my desk now. I don't know if I'll ever take the plunge, so to speak, and learn to swim, but it's there as a reminder of what's possible when you overcome fear and allow yourself to live as fully as possible. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513100 Tue, 31 Oct 2006 16:37:00 +0100 513100 http://martinac.blogspot.com/2006/10/mom-to-nth-power-my-heart-sank-after.html "Mom to the Nth Power"My heart sank after my father's funeral when my sister M. whispered earnestly to me, "I feel so protective of Mom now. We need to shift our attention to her."It's true - my mother needs to be settled into whatever kind of life she's going to have from now on. When my dad was dying, we each promised him that we would make sure she was taken care of, and we will. And, in fact, it's more manageable to have one parent to care-take than two.But I honestly don't have it in me to fret about Mom 24/7 - and that's what will happen if she stays in her house, as she insists on doing, after she returns from her sojourn in New Mexico with my sister. She may be physically residing in her red-brick home, but she'll really be living in our heads.Whatever caretaking energy I had seems to have died with my dad. Indeed, it felt as if I should close out this blog and stamp a big "DONE" across it. Since my father's funeral, I've been sleeping every night for about 10 hours. My sciatica is starting to subside, so that some days I feel like my old, pain-free self again. In a marathon writing session this weekend, I actually finished a revised draft of my full-length play, and it felt great. I started to think about what my next writing project would - could! - be. Katie and I are planning a short trip to D.C. for Thanksgiving, and we're applying for passports for future travels.As selfish as it may sound, I'd like to plan my future, not my mother's. It doesn't help that, just a week after my dad's death, Mom is up to her old tricks - blaming me for removing things from her house, taking mean potshots at M. It's the dementia, yes - but it's also not. It's just her, really - her flaws and foibles raised to the nth power. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513101 Mon, 30 Oct 2006 22:19:00 +0100 513101 http://martinac.blogspot.com/2006/10/are-you-paula-yesterday-we-buried-my.html "Are You Paula?"Yesterday, we buried my dad.The phrase that everyone has said to me over the past four days sticks in my mind: "I'm sorry for your loss." When someone dies, we say euphemistically that we've "lost" them, and now I understand why. For days, I've been wondering where he is; at the funeral home, my oldest sister said to Katie, "Where is he?"At the viewing and funeral, we all went in and out of sorrow like it was some new, unfamiliar room that had been added to our lives. Katie noted that the sadness was more intense at the beginning of the various events - the viewing, the funeral, the ceremony at the cemetery - and then again at the end. In between, there was a blur of cousins I haven't seen in 25 or 30 years, who didn't recognize me but gave me generous hugs, and who didn't flinch when I introduced Katie as my partner. There was my uncle, my dad's only brother, now very ill himself, but determined to see my dad off: "I'll talk to you later," he said to me, when we hugged at the funeral home, "but now I gotta go see my brother."And then there was my mom, who sometimes almost seemed like her old, pre-dementia self as she told people about my dad's long journey with diabetes. But the events of the last nine months - the two falls, all the ER trips, the nursing homes - were absent from her stories, almost as if they hadn't happened for her, and my sisters and I had to fill in the details for friends and relatives. Sometimes Mom's dementia took a new and scary turn, like when one of my cousins inquired about me and my mom led her over, took my hands in hers, and asked me, very earnestly, "Are you Paula?"We had eased her into my dad's dying, telling her at first that he was very sick and getting worse every day. But it didn't really sink in, or she didn't let it. One day at the nursing home, while he was in his deep sleep, I had to stop her from prying his eyes open, like a child might. And then, on the last night, my sister told her that he was failing fast. My mother was patting my dad's head and holding his hand when the nurse confirmed that he was, indeed, gone; but then 10 minutes later, my mom asked, "Should we have a nurse look at him?" Chillingly, she even forgot the funeral - when she and my sister were back at home, my mother wondered why she was all dressed to go out, because "we haven't been anywhere today."My mother is going to New Mexico for at least a few months with my sister. There are some power of attorney-type things left to do, but yesterday I actually said to Katie, "Maybe we could go away for Thanksgiving."The strongest feeling for me now is sadness that I will never see my dad again. I will miss perhaps most of all the times when we just sat together at the nursing home, talking about nothing much. "How's your buddy?" he asked me, after Oktoberfest, just a week before he died - he'd long since forgotten Katie's name, but he still found a way to acknowledge her and my relationship. And, amazingly, he still knew that I was Paula. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513102 Fri, 27 Oct 2006 17:33:00 +0100 513102 http://martinac.blogspot.com/2006/10/robert-w.html ROBERT W. MARTINACJune 11, 1921 - October 22, 2006 My dad died very peacefully last night at the nursing home. We were all with him. The floor nurse called me at 9:45 p.m. to tell me that she didn't think he would last the night, and the family trickled over to say goodbye. At about 11:20 p.m., his breathing stopped, and we thought he was gone, but then it started up again - a few final gasps. And then, just a few minutes later, he died, my mom and sister patting him.The word that best describes how I am now is stunned - not that he died, because I knew he was on his way. But this morning I woke up for the first time in almost three years and realized I didn't need to worry about him anymore. He's gone to a very well-deserved rest.Rest in peace, Daddy. There's no more pain now. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513103 Mon, 23 Oct 2006 14:01:00 +0100 513103 http://martinac.blogspot.com/2006/10/sounds-of-silence-my-dad-is-in-full.html "Sounds of Silence"My dad is in full hospice care now; I signed the papers yesterday. He's sleeping most of the time, and not in apparent pain, which is a relief. My oldest sister is on her way in from New Mexico, since the medical staff believes it will just be a matter of days now.I'm told that he wakes up, but each time I'm there he's sleeping soundly. Yesterday, the floor nurse told me that he woke up in the morning, agreed to a haircut, smiled when she told him he looked handsome, and actually expressed an opinion about the music they are playing in his room - a classical radio station. He would have never put up with classical music when he was well, but yesterday he apparently told the nurse that he loves it. Maybe it is having a soothing effect on him.My horoscope today was as on-target as it ever has been. The last sentence read: "Remember, it's not about how many words you use; it's about what they convey." Even though my dad hasn't been awake when I've been with him the past couple of days, I find myself talking to him anyway.We were never big talkers, my dad and I - I remember going places with him alone when I was young, and neither of us really saying much at all. There would be extended gaps in the conversation that my mother and sisters weren't there to fill in. So the silence now, interspersed with little bits of things I'm thinking or feeling, seems about right. The other evening, I thanked him for saving my childhood writing from the trash bin I threw it in when I went off to college. I may have thanked him years ago, when I became a published novelist and he returned it all to me, but I just wanted to make sure that I had. (Source: Dementia Blues) Dementia Blues blogs http://www.medworm.com/rss/comments.php?id=513104 Sat, 21 Oct 2006 13:43:00 +0100 513104