Caring, trouble shooting

August 9: An amazing thing! Margie has started using the walker, finally, thanks to the pt (physical therapist). But I asked the pt why when Margie reaches to take the walker, her left hand quickly grasps the left handle, but with her right she fishes for that handle below it! The pt told me, after noticing that fishing, she watched Margie at lunch and Margie is eating with her left hand! She has always been right handed (she often joshed me for being “wrong handed”). Now the little she does with her hands is left handed! I wonder if another stroke has destroyed her innate handedness — and if so what else? The pt mentioned she ate a banana; she hated bananas! Confirms the neurologist saying her taste was destroyed by a stroke on the CAT. How much of her brain gone!  

July 22: Before visiting Margie check with nurses; Doctor Heather is there who I saw earlier. When I tell of EMS called yesterday they didn’t know. Both say it would have been better for me to take her. That confirms my feeling yesterday. They say some of thoughts I was thinking yesterday. 

July 21: At noon call that Margie has fallen and seemed okay. Then hour later call that she wasn’t acting normal so needed to go to ER. I offered to come get her, as I had before, but no, they’re calling EMS and I’m to meet her at Seton NW ER. When I see her after half hour wait, she is upset and unhappy. Doctor recommends CT scan and neck scan that happens fairly quickly, and as before I stand by her wearing lead apron. This time she is calmer and holds still. For some reason they want further lab tests. Margie throws a full-court, fortissimo four-year old’s temper tantrum with an adult’s strength, trying to rip out all of the wires and tubes. A few nurses come in one at a time to try to get readings, but quickly leave for me to handle her. Finally a nurse comes in who talks to her calmly, gently, calms her, takes necessary readings. Removes all so I can take her back. When I get home, I am worn out, and think her tantrum started with EMS, who were strangers, probably poked her and wired her as they’re supposed to, siren, strange surroundings. If I had taken her to ER, would she have been as calm as prior times? What an ordeal for both of us. 

July 1: Margie walked steady and needed little support. I talked about using a walker, and she assured me she is fine and does not need it. When I told her she had fallen a number of times, she disbelieved. Firm and self-confident – the Margie I’ve loved and enjoyed. But now?

June 30: The last two days Margie was in bed, did not want to get up, and an attendant said she had been very unsteady so they decided to let her stay in bed. Since seeing her yesterday I began thinking about contacting the alternate Alzheimer assisted living (in an earlier post) that has bed care. Is Margie at that stage? Worrisome. Today, however, she was in a chair in the living room, brightened up on seeing me, and signaled with her fingers that she wanted to walk. We did to a bench some distance away and she seemed steady. We talked some, silent some, until sing along started, and joined the group. A nurse came up to us to say the doctor could see Margie, who came in several minutes later, talked to Margie, checked her, then all three of us talked about getting Margie to use a walker. I’ve long tried to, and her physical therapist tried, but stubborn Margie has refused. I hope now as she realizes her unsteadiness that she’ll use her walker.  

June 24: In an earlier post I wrote about how few words that Margie speaks I understand clearly. Many words if I work at it I can decipher, but most I cannot. Often her gestures give me critical clues. When I visit, I find a bench where we sit together with my arm over her shoulder. Now she sits for long minutes without speaking. She’ll touch and stroke me, smile, but no words. Does she realize her speaking is not clear? So now we often sit together in silence for much of the time. Often I’ve thought of something ahead of time to tell her as in an early post, but Margie says little. Singing that Margie loves now goes twice as long. I wonder at how many songs she remembers. Without looking at words she’ll sing for a long time mostly songs from our youth. But when she remembers so little now, why are songs so remembered? 

June 14: Margie is napping in her bed when I get there, but fully dressed. Awake her, gets up, is alert, interested in our walking. After a few yards she feels unsteady, I support more weight than usual, while she holds onto railing on wall. We head for a bench, but as we get there she starts falling; I guide her onto bench for soft landing. We sit and talk, but she says very little. After a while it is time for lunch, so I help her up to go, but she is too unsteady, so I get her back to bench. Go to get nurse, who talks with her, calls a staff person, and one on each side help her to lunch area. Margie seems more stable, but is it because they know best support? After she’s settled, I talk with nurse, who says she may be in decline. I wonder what surprises are next.

June 6: Today seeing her shoes reminded me that over a year ago I noticed that her orthopedic shoes were often not tied, probably from normal walking. I was afraid she might fall, so I watched for the first time she was wearing different shoes, went to her room, took them to the store where she bought them long ago, explained situation, to see what they had in shoes secured with velcro. Found same style, selected larger size since they were now tight. They said if they were still tight, bring them back to try different size. She has worn them almost exclusively since, and always the velcro straps are tight! One time when she fell was wearing sandals she likes, but physical therapist had suggested she avoid them. Next chance I had, I took those sandals home. Have to be eternally vigilant for even small things that I can do to ease her way, while helping her feel appreciated and understood. How is this different from care of a very young child you love deeply?

Falls and ER and air bags?

June 5: Paying Margie’s monthly bill I notice more “incontinent supplies” than before always followed by a colon and a variety of items. Some items are packs of many. My eye hits “pull ups” that I hadn’t heard of many months ago, but when I see the item I remember seeing stacks of boxes of them at Costco. I shiver at how many caregivers and people are using those. I think of the Margie of so many years: her most used label of herself was “rugged individualist” which she was. Now barely a ghost of that! Her brain (I remember that doctor’s interpretation of her MRI) is a diapered child; looking at her I remember that “rugged individualist” caring for our kids in diapers.  This jumble of thoughts and memories is so schizy!

May 24: Ardor calls right after lunch; Margie fell getting up from lunch; gash in scalp they bandaged but want doctor to see about gluing or stitches. They say it is not too deep, but large. I go right over, pick her up, take her to ER. Again paper work, call her back for vital signs and such. Wheel her to ER room. After she has lain there several minutes I notice spots of blood on sheet from her head. Nurse comes, takes off bandage, examines, rubs on anesthesia, cleans. After wait physician enters room, looks it over, gets staple gun to staple skin closed. Looks and sounds like my staple gun! Margie does not react until last ones then screams. It’s over! Drive her back to Ardor. Suggest to staff they wrap her with air bags or tire tubes. On  way home remember Michelin man; Margie as Michelin woman!

May 21 evening: After writing about today’s ER time trying to make Margie’s time fast and least painful — standing over her in a lead apron! — now I remember watching as in the ER cubicle they took off her clothes to put on the hospital gown. And for a few moments for the first time in several months I saw her breasts and this evening, hours later, my thought fly back over years of wonderful enjoying of each other — our bodies and our selves. She said in the ER I am so glad to have you. What an adventure! Now dead and gone? Thinking these thoughts I start writing, and it is a poem. I won’t put it here, it is unready for Dr. Howard’s creative writing class of years ago. But it expresses my mixed feelings.  

May 21: Ardor calls late morning that Margie has fallen while walking, and seems okay. Call again in a few minutes that now she appears in pain; they think something may be broken and need to get her to ER for x-rays and CAT scan; I tell them I’m coming over to take her. I’d rather shepherd her through. When I see her in her room on her bed, she is moaning in apparent pain. They carefully place her in wheelchair then into car. ER brings out wheelchair and two people carefully help her into it. I do inevitable paper work before any exam. They get to her quickly, check vital signs, then to an ER cubicle. After a while come for x-rays, and I go with her moaning some. To get x-rays need to turn her over; she screams. Tech can look at result of x-ray within seconds — digital is wonderful. Tech needs to re-take one or two. Back to room for CAT. She’s quiet. Wonder to what extent moaning was like small child; really hurt but make it appear worse to get sympathy; in her Alzheimer is she acting like a kid? For CAT she has to hold head still, doesn’t, so they put a lead apron on me so I stand on one side, a nurse on other, and we stroke her and talk to her. The nurse says she is more relaxed when you stroke her. Still need to re-take once. Soon after back in room nurse comes that radiologist examined x-rays and no breaks and CAT shows no bleeding into brain. Check her out to take her back to Ardor. Call from car that I’m coming. Digital x-rays, CAT, cells speed needed stuff! 

Alzheimer assisted living, seizures

Sept. 3, 2006 mid-morning Ardor calls that Margie had a grand mal seizure and EMS is taking her to Seton ER where I go. Look into room where she is in critical condition and they’re working on her. Physician in charge sees me, asks if I am husband, and I say, yes, we do not want resuscitation. He goes back to work. Hours later she is stabilized and moved to hospital room.

Next morning I cannot understand anything she says; she can’t walk. She’s not following directions. I need to stay all day. Seek out social worker and badger nurses about her care. At first they say they must move her to nursing care facility. No! if she cannot be understood how can she be cared for? I probe them for alternatives. Finally they refer her to Health South rehab hospital; are they glad to get rid of me? I drive her to Health South afternoon of third day, and check her in. Visiting only in late afternoon so they are uninterrupted in their rehab. Daily improvements. Identify myself as a social worker to her social worker and we relate very well; I get info and support. That they are so effective with an Alzheimer patient who cannot remember moments ago is miraculous! As she improves, I wonder at the memory still there? By Sept. 18 she walks alone and talks fairly clearly. Some of the feisty, motivated Margie I’ve shared for over fifty years is still there! I take her back to Ardor.

 

June 18, 2006: I’ve visited almost daily, our kids go by some, Margie talks much less about dying or killing herself, but asks the same questions unless I plan something to talk about.

At noon today I get a call that she had a seizure; they called EMS who are taking her to an ER. I go there, see her, phone both kids. They work to stabilize her. After a few hours they release her for me to take her back to Ardor. A physician explains what they found; have no idea what caused the seizure, recommend an MRI, and do not prescribe anti-seizure medication after just one, but if she has another they will.

Make appointment and take her out of Ardor for MRI. Margie is agitated, so they arrange so I can stand beside her, stroking her, calming her. MRI is noisy! Days later an appointment with a specialist who gives normal neurological test: many “simple”  questions and for first time Margie cannot say how many children she has or where she went to college! He shows me the MRIs and says ventricles in her brain are much larger than normal because so much brain tissue has died from strokes; I’m amazed. Some doctor had recommended a spinal tap, but he explains why not good idea. I am stunned that Margie’s brain has shrunk so. I am sad that the MRI reflects her minimal talk and feelings in our visits — so very much is gone! 

August 2005: When I go to visit, one of the staff tells me she was showing some people around Ardor when they stopped outside the activity room to talk. Margie was nearest of those seated for activity, got up, came up to staff, said we’re have a meeting and you are interrupting it; go somewhere else! Staffer said she acted like a teacher. That’s the assertive Margie I’ve known for so long! 

July 2005 is Margie’s first full month in Alzheimer assisted living at Ardor. I see her almost daily. If I don’t plan ahead, she asks several questions repeatedly: Why am I here? Why did this happen? What can I do? I want to die — that she says in many ways! An answer is forgotten in moments as she asks them again. Once this litany starts there is no stopping. So I begin planning things to talk about: something one of our kids has experienced, something of mine, a news report, anything that grabs her attention so she doesn’t ask the same dreadful questions.

She keeps talking about wanting to die. She will kill herself in a place designed to make that unlikely. One day after hearing that when home I write a page for my web site that closes with, “She often says urgently, I want to die. Decades ago after I visited church members in ICUs, I talked with her about my feelings, and we both often said, we did not want to be kept alive. I wonder if, when she says that, she remembers those conversations and this is a very lucid, clear cry from some deep memories in her soul,” in http://www.yeaperson.com/Not-here.html.