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Here are extracts from a journal Nancy and I have been keeping since Nancy’s mother, Lorraine, had a stroke sometime in the early hours of March 25. Lorraine, now 92, has been living with us the past two years. (Photo: Lorraine and Nancy in the neurology ward at the Alkmaar hospital, 2 April 2009.)March 25, 2009: Lorraine has had some kind of neurological episode. Apparently it's not exactly a stroke, though that was my first guess. She didn't come out of her room for breakfast this morning. She finally opened her door just before 9:30, an hour later than usual. I went in to see how she was and she looked pretty bad. She tried to talk to me, but talking was difficult. She struggled to say that she had tried to dress herself and had had a lot of trouble doing so. She hadn’t been able to put on her earrings or necklace. She didn't feel like eating anything, which is extremely unusual since she usually eats all the time. At first she said, "Well, I guess this is it," and she seemed quite calm about it. We were able to laugh a little and to talk about death. She said we would probably give her a good Orthodox funeral -- “with all the works," as she put it. But it was still difficult for her to talk. Then I called the doctor, who came over about an hour later. He took her blood pressure (normal) and checked her heart (slightly irregular, but not highly irregular), and tried to talk to her. Her speech was more slurred by then. I noticed that when she talked to him, and then to me, she didn't look at us -- she looked off to the side, almost as if she couldn't see us.
The doctor’s guess is that the disorientation is due to a blood disorder she has had for many years, something called polycythemia vera, which essentially is an overproduction of blood platelets. This makes her blood very thick, and there is always a danger that the veins of the brain will be affected. She's been having treatments for this at the hospital (basically old fashioned blood-letting).
Our doctor said ordinarily, if someone has this kind of problem, he'd send them to the hospital for a full day of screening, but when you're 92 and so frail, it hardly seemed a good idea. He said even if you get some results, what do you do with them? So he recommended that she take aspirin to thin her blood (which she had been doing, actually), and asked me to contact him if the situation changed for the worse.
For the past few weeks Mom has been having warning signs: flashes of disorientation, which make her feel very dizzy and anxious. She thought it had to do with the medicine she was taking, but obviously not. For the first time she had been talking about going to a nursing home.
Of course I always knew this kind of thing would happen some day, but when it happens it always throws you off guard. The weird thing is that Dan came to visit us last night, and she ate with us and sat with us on the couch, talking and very animated. She seemed fine. -- Nancy
March 26: Lorraine couldn’t get out of bed this morning. Our doctor came within minutes of my calling him and called an ambulance which arrived almost immediately. It is necessary to know exactly what is going on in her head, which means screening. Actually the screening wasn't so bad. I went with Lorraine to the emergency ward at the Alkmaar Medical Center, our regional hospital, which luckily isn’t far from our house. She was given blood tests, an ECG and a CAT scan as well as various reflex tests. Then she was taken to the Brain Care Unit, which is a special neurology unit with 8 beds, 6 of which have monitoring equipment. She was hooked up to the monitoring equipment (heart monitor) and was given an IV drip to hydrate her. She'll stay there for 24 hours and will then be taken to an adjacent room in the neurology ward hospital to see which way this goes. Although we haven't yet talked about what comes next, the staff suggested that, assuming she pulls through, she would be sent to come kind of rehab facility or nursing home. But that, they told me, is way down the line.
The neurologist told me that the CAT scan did not reveal any bleeding, but that she has had a major cerebral infarction. They will give her medicine to see if the situation can be remedied, and if she can get some functioning back. But you can see that the infarction was on the left side of her brain, since her right side has been affected. She cannot use her right hand, and I don't think she can see on the right side. If you stand on her right she doesn't seem to know you're there. The toes on her right foot are curled up and cramped. As it is now, she can no longer form words, so when she tries to speak she can only make the same sound over and over again, except for a few words (I, you, but, yeah). This is extremely frustrating for her.
Last night we visited with Kylie, and at a certain point Mom tried desperately to tell me something. Finally she began gently pushing me with her left hand, and Jim said, "Do you want us to go?" and she said, relieved, "Yeah." I guess I stayed too long because I'm so worried she'll feel abandoned, or frightened in a strange, foreign hospital. I reassured her that the people there are very good and kind, and the care is excellent. I think she actually trusts hospitals (she's been in enough of them), so I can relax on that count.
Having her room empty now is very strange. -- Nancy
March 27: We visited last night with Anne and Thomas, Anne's boyfriend. There's just one other woman in the room with her, so it's very quiet and private. She was sleeping when we came in, but she recognized us as soon as she saw us and smiled weakly. She did try to speak a little, but not as much as the day before -- not the frustrated wordless noises she had been making. She spent most of the time with her eyes closed and with the smile on her face. She seemed quite comfortable and not afraid.
Earlier in the day one of the ward nurses had called to tell me the hospital speech therapist had been to see her and would leave a long list of questions for me to answer so they will know more about who my mother is. It's called as "aphasia list," so this is the technical word for loss of speech due to brain damage. I told her the speech therapist would be coming to see her, and she just groaned. She doesn't like learning new things (she groaned the same way a few months ago when we got her an alarm phone and had to teach her to use it). I read some of the questions out loud to her and made some jokes along the way ("What are your hobbies?" "Ah, touch football, bowling.") and she chuckled, so she can still understand jokes and respond to them. I told her I'd write down everything -- about painting, ceramics, about her childhood and her family -- and she seemed happy about that.
She seemed weaker. She didn't try to raise her head, and she didn't even open her eyes very much. After about 10 minutes she just said, "Go" (she can still say that!), so we said goodbye and left.
I'm not at all sure the speech therapist is going to get very far with her, but these people know what they're doing and I may be surprised. I'm going to fill in the questionnaire and take it over this afternoon, and hopefully I'll be able to speak with someone about her condition and about what they plan to do. -- Nancy
March 28: We visited Lorraine in the afternoon and found her apparently asleep and struggling to breathe, mouth open, eyes closed. Nancy held her hand and after a time was able to tell Lorraine she was there. Lorraine seemed to respond with recognition. We gave her some water which she drank with a straw -- just a few tablespoons. Lorraine made no attempt to speak except to respond “yeah” when Nancy asked if she should leave now.
The nurse let us read the patient book for Lorraine. It had been noted that Lorraine didn’t seem to care for the food except for the dessert, which she obviously enjoyed. -- Jim
March 29: Cait and Bjorn were with us for a visit with Lorraine in the late afternoon. Lorraine was in a significantly improved state. She woke up as soon as we arrived and stayed wide awake and very attentive throughout the visit, which lasted 20 minutes or more, longer than any of the previous visits. Her face looked brighter and firmer. I noticed she used her right hand to make a gesture; that arm had seemed paralyzed during previous visits. Lorraine was especially happy to see Cait, who is due to give birth about April 21 and so at present is pregnant in a big way. It has been one of Lorraine’s hopes that she would live to see the birth of her first great-grand-child. At the end of the visit, Nancy put Lorraine’s hand on Cait’s tummy and Lorraine beamed like the sun, saying to Cait, “You behave yourself!” Three words. This was Lorraine’s first complete sentence in our hearing since the stroke. -- Jim
March 30: Lorraine has improved quite a bit over the past 24 hours. We visited her this afternoon and again in the evening, when Wendy, Thom and Kylie came to see her. She was delighted to see them. She still can’t talk, but sometimes she manages individual words and three-word sentences. When I was leaving at the end of the afternoon visit she said “See you later” to me. She was able to move her right arm this time and to brush aside her hair with her right hand. Her color is better, and she seems to be fully aware of what has happened to her and what’s going on around her. -- Nancy
March 31: I had a chat with the ward nurse on the phone. She said Lorraine is able to stand, but can’t move her right leg forward, which means she can’t walk. (Actually she hasn’t been able to walk well in several years. Her balance is poor, and she can’t walk anywhere without a walker.) A rehabilitation doctor will be looking at her and deciding on what needs to be done. So while she’s there in the hospital she’ll be undergoing therapy with the speech therapist and the physical therapist to see how much function can be recovered.
The nurse said at a certain point we would be called in for an evaluation and to talk about the future. Lorraine will probably be moved to a rehab facility in or around Alkmaar. She said the waiting lists are very long, but she did tell me the hospital would set things in motion and would help us make choices. She mentioned bringing Lorraine back here to the house, but I told her we couldn’t deal with that. She said, “Well, what did you do before the stroke?” and I said, “Before the stroke she could walk with a walker, she could eat and dress and wash herself and shower. All I had to do was cook her food and do her laundry.” This may require a bit of pushing on our part, but I hope not.
I made an appointment for next Tuesday to speak with the neurologist. At this point the questions I have fall into two general areas: 1) how is Lorraine doing? what’s the prognosis? 2) how does the Dutch health care system work in cases like this? It’s beginning to dawn on me that we’ve entered “the system,” and once you do that the system carries you along. At this early stage I don’t know what this means in actual terms. But when I asked the nurse today if we had to take any initiative and find a care facility on our own, she just said, “Oh, no. We do that,” as if it were the most normal thing in the world.
Visiting again in the evening, we found Lorraine in a deep sleep, and she didn’t seem to want to be awakened. Finally she did rouse herself a little, but was happy when I said we’d come back tomorrow. -- Nancy
April 1: The hospital called and asked me to bring over more clothes, and when I arrived I found Lorraine fully dressed and sitting in a chair! Her hair had been washed and she looked much better. Still having a lot of trouble talking. I asked her about the speech therapist, and she had a fairly negative reaction. She did manage to say, “I will indulge,” which I thought was pretty funny. I think it means that she’ll put up with it all. I had brought two stuffed animals that she keeps on her dresser, the newest one (a cow) that Kylie gave her for her 92nd birthday, and the oldest one, an old sock doll made by her mother when she was four. She put the two dolls together and arranged them against a flower vase on the table, and said very carefully, “They will proceed.” -- Nancy
April 2: It’s been one week since Lorraine was admitted to the hospital. The hospital called and asked if I would bring over something for her to look at or read. She doesn’t read at all any more, and she never looks at magazines, but Jim suggested bringing over a couple of her photo albums. She can spend hours looking at these old photos, some of them from when she was a little girl in Sundance, Wyoming. When we got to the hospital we found she had been moved to a larger, more cheerful room with more people in it. She was dressed and sitting at a table in the middle of the room. The first thing she said when she saw Jim was, “How are you doing?” Jim assured her he was doing fine. She was delighted to see the albums. She kept saying, “Oh, by goodness!” over and over, quite clearly. We looked a little at some of the pictures, and Jim (who was sitting across from her) noticed that she didn’t see anything on her right side, and didn’t even seem to notice that she had a right side. When you point to something on the right, she doesn’t turn her head in order to see it. She just says, “Yes.” The sad thing is that her right eye is her good eye; the left eye is the one with severe macular degeneration. So obviously she doesn’t see much anymore.
I told her she looked much better, and she seemed cheerful. She smiled and laughed, and tried to talk, without much success. She did say, “What happens, happens,” and “the next day and the next day and the next day.” She’s resigned to whatever we do for her, so our job is to make sure we do the right thing and that she gets the care she needs. When we left, I said, “I love you,” and she said, “And I love you.” I told her this was a much nicer room, and I said, “I’m going to teach you a new Dutch word -- gezellig -- this is a gezellig room.” She tried to say gezellig (which is hard even if you haven’t had a stroke), and couldn’t, and we all laughed. (Gezellig, by the way, means cheery and comfy.) -- Nancy
April 3: We went for an afternoon visit. Jim had the idea of taking her down in her wheelchair to the café on the main floor of the hospital. We first checked with a floor nurse, who said she couldn’t drink coffee and was being restricted to thick liquids. The nurse suggested going outside, since the weather today is really warm and sunny, truly a spring day. Mom was sitting in her room at the table. We sat down and she smiled. But when we asked if she wanted to go for a walk, maybe outside, she said no. She didn’t even want to go outside her room. Just stay there in her room, at that table. There was a small container of pudding in front of her, which I think is fortified pudding. We asked her if she wanted some, and she said, yes, so I fed it to her. She ate it all, more or less dutifully. We tried to talk about how things were going, and with the few words she could say clearly she told us she thought the therapies were too much. Her heart is really not into recovery, at least not today. She’ll go along with whoever tries to get her to do things, but she’s not enthusiastic. I had the feeling she was just waiting -- waiting to die. The beautiful weather doesn’t interest her, nor a change of scenery.
We looked at her photo books, so we went over a few pages until she seemed to become tired. We asked if she wanted to stop, and she said yes.
I told her how Cait’s pregnancy is coming along -- the birth will probably be in the next two weeks.
After about a half an hour she seemed to have had enough, so we said goodbye and left.
I went into town afterward to do some food shopping. I found myself moving very slowly, weighed down by the momentousness of what she is going through. She’s not apparently frightened or depressed, but the mere fact that she’s coming to the end of her life is a stunning thing to watch. She’s not fighting it, not raging against the dying of the night. And clearly she doesn’t want anybody to try to pump up her tires. This is the woman who, a little over a week ago, put on jewelry and earrings every day and was constantly complaining about her food. -- Nancy
April 6: This morning I had a phone chat with the speech therapist. She said Mom is slowly improving, but her ability to speak is still very limited. She said this is made more difficult by the fact that she doesn’t really see anything on the right side. If you hold up a page to her, she doesn’t see the right side of the page. I told her I had brought some old photo albums to the hospital, and the therapist asked me to label the photos so she could use them in speech therapy with my mother. On Friday afternoon I’ll meet with the therapist and visit Mom to see if we can make any headway together. She also asked me to come up with a list of Americans songs that we can sing with my mother, since people with aphasia are often able to sing even if they can’t talk.
Later today I went to visit. Mom was in a deep sleep and could not be wakened. I sat at the table with yellow sticky notes and labeled a few dozen of the photos in her albums. The “transfer liaison” came in and talked to me. She wanted to know what my preferences were for a care facility after the hospital. I really don’t know, but I said anything in Alkmaar or nearby. She pointed out that this was only temporary, until Mom was ready to come home. I said I didn’t think I could take care of her at home, and that at this point we were looking for a permanent place for her where she can receive the kind of nursing care she needs. -- Nancy
April 8: At the recommendation of friends in the US, I just watched a YouTube video of a talk by a neurologist, Dr Jill Bolte Taylor, that really impressed me:
http://www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.htmlVery interesting, very moving. For Taylor, her stroke brought her to an understanding of existence that borders on the mystical. Orthodox theology has an understanding of mystical prayer that comes very close to what she has experienced -- what the theologians call "bringing the mind into the heart" -- or, in Taylor’s case, moving from your right hemisphere to your left hemisphere. Astonishing.
The stroke Mom experienced wasn’t as severe as Taylor’s. She had an infarction, not a hemorrhage. Yet it helps me understand that when she talks to me, she thinks she's saying something comprehensible, yet all that comes out of her mouth is "wuza wuza wuza." And she can't understand why I don't respond to her. Very frustrating for both of us. -- Nancy
April 9: Lorraine has her up days and her down days. When Nancy went to visit her the day before yesterday, she found very withdrawn, irritated, probably depressed, possibly angry. Nancy wanted to take her in her wheel chair for a walk and perhaps stop in the hospital café on the ground floor. Lorraine made clear she didn’t want that. She “talked” -- that is made sounds in place of words -- that made her feelings clear. But yesterday she was in much better spirits, glad to see Nancy, and -- though still unable to talk apart from a few simple words -- nonetheless able to communicate that she was in a better frame of mind.
One can only dimly imagine her inner struggle. She finds herself suddenly to be unable to speak, unable to get out of bed, unable to walk, and wearing diapers. The morning of the stroke, when she still was able to take part in conversation, she thought she was dying and seemed very much at peace with that prospect. Now she finds herself alive, but in a condition in many ways resembling solitary confinement. She is also aware that she will not be living any longer with us but in a care facility. While she had anticipated that happening sooner or later, and in the past expressed no anxiety about that prospect, now it’s actually happening, and that is almost certainly a source of worry.
One nice thing: There’s a Canadian nurse in the neurology ward and she goes out of her way to talk to Lorraine. Indeed Lorraine is giving all the staff in her ward a chance to brush up on their English. The speech therapist has asked Nancy to teach her English-language songs that Lorraine knows.
I’ll be at the Alkmaar hospital for a CAT scan of my lungs this afternoon (this has to do with fluid accumulation in my lungs -- an apparent side effect of the anti-rejection medication I’ve been taking in recent months; probably there will be a change in medication) and afterward will stop for a visit with Lorraine. Nancy will visit her this evening.
I received a helpful letter yesterday from my friend Alex Patico:
“The last ‘freedom’ an individual has is to determine how they will face that imposed imprisonment. Some "do not go gentle into that good night" while others welcome the release and relief. My mother, who was always the pollyanna in the family, never admitting to pain or troubles, finally, after the indignities and irritations of hip surgery, tests, rehabilitation, the solitude of hospital and nursing home rooms, etc., had just had it, and, at the end, stopped eating. She actually seemed happier, once some switch had clicked over inside her and the way forward was clear. We had some very good moments during her last weeks -- mainly due, I think, to the fact that she was back in control. (My mother, who was always so positive and accommodating, also had a ‘controlling’ aspect to her, which was harder to see.) Had it not been for the surgery and what ensued, though, she might have gone on for some years.
“Lorraine needs to figure out, as we all do, again and again, ‘what she wants to be when she grows up.’ (Of course, ‘up’ doesn't look so lofty at this point, but it is the next step in her journey.) She can either hang in there, call it quits, or simply place herself in God's hands -- free will persists till the end. The best you can do is to help her know that she has it.” -- Jim
April 9: Tough visit tonight. I got to the hospital at about 7:15 and Mom was sitting at the table with her head bowed down and her forehead touching the table. She seemed to be crying, but very quietly and without tears. I sat next to hear and she kept saying, “I want to go home. I want to go home.” I just sat and held her for awhile. Then I told her she really had to stay in the hospital because she had had a stroke and she needed special care, and we couldn’t take care of her.
Then she suddenly switched gears and sat up, looked straight at me and started talking in a very angry tone, all of it gibberish that I couldn’t understand. I finally understood that she was telling me not to come there anymore, to go on with my life the way it used to be.
I said, “Mom, I can’t do that. I love you and I want to come and see you.” That just made her angrier.
More gibberish.
Finally I tried to guess what she was saying. I said, “Would it be better if I didn’t come to see you every day?”
“Yeah.”
“Should I come every other day?”
“Yeah.”
I said, “Okay, Mom, I’m going to tell you how I feel. I’m afraid you’re lonely when you’re here all by yourself, so I come every day so you won’t be lonely.”
“Oh,” she said, and gestured in a way that suggested that she was fine, the hospital was nice, and not to worry about her.
I said, “So you’re okay here by yourself.”
“Yeah!”
“And it’s okay if I come every other day?”
“Yeah!”
Finally a breakthrough. We both started laughing after that. The nurse brought in some tea for both of us and a cheese sandwich for her, which she cut up in small squares. This is the way Dutch people eat their sandwiches sometimes -- cut up in pieces and eaten with a fork -- but for my mother it’s really strange. I asked her if she wanted a cheese sandwich, and she said, “No!” very firmly.
I told her about my trip to Amsterdam today, my meeting at the Anne Frank House, the new bag I had bought afterward, and about Cait’s visit to the midwife. I told her I would have to come back tomorrow because we’re meeting with the speech therapist to sing together. The speech therapist had asked me to come up with some songs Mom would know. I said, “Shall we sing ‘Let Me Call You Sweetheart?’ and she liked that,” so we’ll try that tomorrow.
It felt as if a lot of steam had been released, and Mom was laughing when I left. But what a lot of work! -- Nancy
April 10: I went to the hospital earlier than usual today in order to take part in a session of speech therapy. While Mom was being dressed, the therapist and I talked how best to deal with Mom’s lack of motivation. The therapist’s strategy now is to focus on songs, because when you sing or recite, you use a different part of your brain. People who have trouble speaking often find that they can sing or recite quite well.
Aware this was the next step, I had brought a list of songs I thought we could sing together. We started with “Let Me Call You Sweetheart.” As soon as I started singing it, Mom joined in. The therapist asked me to drop the last word in each line to see if Mom would supply it. She did amazingly well -- the words were a little mushy, and some were wrong, but she got through it all and even carried the tune. And she swayed back and forth as she sang! It was beautiful. Then we sang “Bicycle Built for Two” and “Take Me Out to the Ballgame,” and she managed to get through both of them. Then I reminded her that the day before the stroke, on Tuesday, I had taken her out in the wheelchair when the weather was cold. It was a typical March day, and Mom had recited this as we walked along:
The March wind doth blow, and we shall have snow,
And what will the robin do then, poor thing?
He’ll fly to the barn, and keep himself warm,
And hide his head under his wing.When I recited it, she was able to supply many of the words.
The therapist gave me two lists of words in Dutch that are common pairs (salt and pepper, hot and cold, up and down), and asked me to translate them into English. She’ll use this with Mom in further sessions. I’m also asked to write down some American rhymes, sayings and expressions that Mom would know.
All this reminded me of a story in Oliver Sack’s
The Man who Mistook his Wife for a Hat, “The Ancient Mariner.” This was about a man who had total amnesia -- couldn’t remember a thing from one minute to the next. But when he went to church, he could recite the entire Mass from beginning to end. Someone also recently told me a story about Dutch immigrants in Australia. They learn English as a second language and do just fine, but when they get very old and have to go to nursing homes they tend to forget their second language and begin speaking Dutch again. So the Australian government has had to ship in Dutch nurses to work with these old people, because they can’t speak English anymore! -- Nancy
April 14, 2009: When Nancy went to visit yesterday, Lorraine was sound asleep, but when I dropped by this afternoon to bring over her the clothes Nancy had washed yesterday, I not only found her awake and sitting in a wheelchair at the table near her bed, but engaged in animated conversation -- using word-like sounds -- with her oldest doll, a sock doll made by her mother when Lorraine was four. I touched Lorraine lightly on the arm, which quite startled her. It took her a moment to realize who was there. Then she put her head on her elbow and laughed and laughed and laughed. She didn’t mind talking to her doll in the presence of the three other patients in the room, plus several visitors, but perhaps was embarrassed that I should witness it. I’m not sure. When the laughing stopped, I told her that at least her doll understands every word she says. Lorraine nodded her head in agreement. She remained in good spirits the rest of our time together but was dead set against eating the half cup of pudding that was in front of her or drinking any of the orange juice that was also there. Then she said “go.” I kissed her goodbye, put her clothing in her closet, picked up a bag of laundry to be washed, and was away. -- Jim
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Photos of Lorraine and her paintings are in this folder:
http://www.flickr.com/photos/jimforest/sets/72157603780115420/ * * *
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