I left my home a little after ten in the morning yesterday and arrived at the Hospice House at eleven-thirty. Mom was in the same position as I saw her yesterday. I greeted her but she did not respond or acknowledge my presence, or maybe she did but it was very subtle. I settled in my stuff and picked up the book of short stories by D.H. Lawrence and began to read the story "England, Oh England."
And naturally, I began to cry. Damn it, I said softly but aloud, not hiding it from Mom. She did not respond.
After a few more false starts and wiping of tears, I got into a flow with the reading - trying to follow the story more then to see myself alone in a room reading to my dying Mother. The CNA popped in and waved me on. Then the nurse who has been with her for a while came in, and we chatted. She said Mom ate a little ice cream yesterday, but mostly she's only drinking fluids. I didn't see her eat or drink or urinate or open her eyes the three hours I was there.
I read some more. Then the social worker Dad and I had met with the day before, Jamie, came in and asked if I'd like to talk with her. We went into the very zen -like reflection room and talked more about the decisions made in the last twenty-four hours - Dad decided it would be best to arrange for a nursing home, and made some calls to a very reputable one only half an hour from our house. I told Jamie I stood behind anything he needed, at this point, and I'm positive my siblings would as well.
Sadly, or maybe, not sadly, the bottom line is that it appears that Mother is shutting down and there is a strong possibility she will not leave the Hospice House. The moment I walked into the facility I realized that, and I told Jamie I would not feel remorse if that will be the case. In the meantime, Dad has gotten enough straightened out for the temporary future enough so that now, Jamie urged, it is time for all of us, but especially Dad, to simply just to be in the present regarding Mom. She wondered if I could tell him that, and I said yes. I did later when I got home. He gets it.
I went back to the room and read some more. On the way back, I waved to Doctor A., who was consulting with people in the main office area. I was told Dad was on the phone, so she told me to let it ring when I got into Mom's room, and then I could talk to Dad. I said to Mom, who was in the same position as before, "Dad's on the phone, here he is," and I put the phone up to her ear and I could just barely hear Dad say, "Hi sweetheart," and that was the only time I saw Mom respond at all. Her eyes fluttered and she just barely whispered "hi."
It was a touching moment to see. I let her listen to him talk some more, then he and I talked for another minute and hung up. I went back to reading the story, when Doctor A. walked in. He asked if Dad was with me, I said no.
He told me she had had a tiny bit of morphine the night before. He doesn't think it's the morphine or the Haldol that is making her like this. He said we was going to skip the next dose of Haldol to see if her agitation returns. Then he said, "I'm sorry." Twice.
I shrugged. He left, I went back to reading. The CNA came in and asked if I was staying all night, I said no, but we were coming back tomorrow. She said take your time, I'm gong to give her a sponge bath after you leave. Okay.
I finished reading the story. I said goodbye to Mom, talked to her like she could hear me, told her who was coming to see her this weekend. I told her to hang on until then. I love you, and I know you love me. Then I just stood there and looked at her from the foot of her bed. She did look comfortable, and this brings me peace for her. She's been agitated for so long.
Last night, Dad called to tell me that he had called and had a good talk with the nurse there. They've decided to gradually take her off of the Haldol all together, down to .5 mg today, and no Haldol at all on Sunday. That way, he says, we'll know, if it's the drugs or... nature taking it's course.
At nine-thirty at night, my sister, older brother, and nephew came over for an hour visit. We sat outside by the campfire and talked. I was feeling strong and have been concerned about their feelings. I've had a lot of time to spend with Mom and grieve, but they haven't. It's a crappy feeling to try and squeeze it all in in a short amount of time and with so much distance between them, I can imagine. I should not have been surprised when my brother suddenly broke down in a ravaged fit of tears. My sister and I told him it was okay to cry.
Dad and Don and I will get rolling in about an hour, and the other three will follow up later. The social worker will be available for the others if they should like to talk at all.
My girlfriend Lynn, who lost her mother in early February to this disease, said to me in an email yesterday, after I had filled her in on the where we were at,
"I think I would weigh on the side of caution and plan to spend as much time as possible with her now - I don't know of anyone that has come home from hospice - but what do I know."
Showing posts with label communicating. Show all posts
Showing posts with label communicating. Show all posts
Saturday, May 7, 2011
Saturday, April 23, 2011
Facing Fears
Yesterday, Mom was very groggy in the morning hours. Dad had had to give her one extra Haldol and later, one extra Ativan, in order to get her to settle in and sleep all night.
A home health worker came at around eleven-thirty and gave Mom a little sponge bath and change. Mom skipped lunch all together, opting for more sleep. I read a lot to her, though I'm not sure how much she really heard.
The hospital bed arrived around twelve-thirty, and the man very quickly and efficiently set it up and showed us how it works. An early email report from Dad today reports that Mom slept fairly well in it last night (Friday night), and he had no need to give her extra medications.
A little after one-thirty, I think it was, the sun was beaming and warm, and I was able to convince Mom to go sit outside on the side porch off their bedroom. Just as we settled down, I saw our next appointment drive up. Lissa is a chaplain who works on the team at the agency, and she joined the three of us outside on the porch for awhile, and explained her part of the network of supporters.
After about twenty minutes, we went back inside and Lissa sat close with Mom and asked her if she was afraid of dying. Mom began to cry and said yes, that she didn't want to not go on living. It was heartbreaking to see Mom express herself so, but it was really good that Lissa broke the ice a little. She got Mom to "face" the fear and Mom yelled out the big scary word DEATH. Then she became very upset and asked to be helped to stand up. Dad got her up and walked around with her, giving Lissa a chance to ask me about a few things. Then she mentioned that if I got a chance, to ask Mom if she was afraid of dying or afraid of being dead. I said I suspected it was the former, but I said I would ask her if the opportunity came up.
Lissa left, leaving us her phone number so that we could call her any time to make an appointment to talk, and promised to call next week to check in, either way. Then Dad went down town, and Mom was calm again on the couch. I continued to read aloud from Little Women (it's one long book.) When Dad came back, it was my turn to go down town. Back home, I went back over to Mom and Dad's at five.
I had purchased an Easter Lilly and brought it over, and Mom enjoyed that. Dad had to run back down town to get some pills (they weren't ready earlier), and so I stayed with Mom for another thirty-five minutes or so. Mom asked me how I liked "the woman that came earlier today." I said I liked her.. then we were able to talk some more, and I was able to ask Mom the question, and she answered as I thought she might. That allowed me to assure her that, if she should pass away before any of us, we would all be very sad but okay, as she has surely left her mark on all of us, and she would still be alive in our hearts forever. She seemed to hear that, and she did not get upset again.
Well, a little later she did, but that was just the usual old sundowners cropping up.. but I got her up, offered her a glass of wine, and before we knew, she was calm again, in her chair, watching the news and sipping on her wine. I was happy to have Dad come home to that scene.
I left while the getting was good then. Another emotional day to mull over.
A home health worker came at around eleven-thirty and gave Mom a little sponge bath and change. Mom skipped lunch all together, opting for more sleep. I read a lot to her, though I'm not sure how much she really heard.
The hospital bed arrived around twelve-thirty, and the man very quickly and efficiently set it up and showed us how it works. An early email report from Dad today reports that Mom slept fairly well in it last night (Friday night), and he had no need to give her extra medications.
A little after one-thirty, I think it was, the sun was beaming and warm, and I was able to convince Mom to go sit outside on the side porch off their bedroom. Just as we settled down, I saw our next appointment drive up. Lissa is a chaplain who works on the team at the agency, and she joined the three of us outside on the porch for awhile, and explained her part of the network of supporters.
After about twenty minutes, we went back inside and Lissa sat close with Mom and asked her if she was afraid of dying. Mom began to cry and said yes, that she didn't want to not go on living. It was heartbreaking to see Mom express herself so, but it was really good that Lissa broke the ice a little. She got Mom to "face" the fear and Mom yelled out the big scary word DEATH. Then she became very upset and asked to be helped to stand up. Dad got her up and walked around with her, giving Lissa a chance to ask me about a few things. Then she mentioned that if I got a chance, to ask Mom if she was afraid of dying or afraid of being dead. I said I suspected it was the former, but I said I would ask her if the opportunity came up.
Lissa left, leaving us her phone number so that we could call her any time to make an appointment to talk, and promised to call next week to check in, either way. Then Dad went down town, and Mom was calm again on the couch. I continued to read aloud from Little Women (it's one long book.) When Dad came back, it was my turn to go down town. Back home, I went back over to Mom and Dad's at five.
I had purchased an Easter Lilly and brought it over, and Mom enjoyed that. Dad had to run back down town to get some pills (they weren't ready earlier), and so I stayed with Mom for another thirty-five minutes or so. Mom asked me how I liked "the woman that came earlier today." I said I liked her.. then we were able to talk some more, and I was able to ask Mom the question, and she answered as I thought she might. That allowed me to assure her that, if she should pass away before any of us, we would all be very sad but okay, as she has surely left her mark on all of us, and she would still be alive in our hearts forever. She seemed to hear that, and she did not get upset again.
Well, a little later she did, but that was just the usual old sundowners cropping up.. but I got her up, offered her a glass of wine, and before we knew, she was calm again, in her chair, watching the news and sipping on her wine. I was happy to have Dad come home to that scene.
I left while the getting was good then. Another emotional day to mull over.
Wednesday, April 20, 2011
Harmonious Long Day
Mom was not perkier yesterday, at least not until later in the afternoon/early evening.. Then, I wouldn't call it "perky!" She rested on the couch all morning as we switched the beds around. It went very well and smooth, and after the guys left, I spent the rest of the day finishing up the details. Mom was cool about the whole thing, and seemed to like the more opened-up feel to their bedroom. Dad has ordered the hospital bed and it will arrive here on Thursday.
We had a visit from a home health aid, Linda, at around twelve-thirty or so. I told her about what had been going on all morning, and that it was best to just let Mom rest. She was fine with that, and she assisted me move a few books upstairs. She suggested that we order a bed side table to go with the hospital bed. She thought Mom looked pretty colorless that day.
After I went home for an hour for some lunch, I went back around two, and sat with Mom while Dad went out for a walk. I read a chapter or two from "Little Women." Once in a while, she still corrects me when I pronounce a word wrong. Despite how she looks like she is fast asleep, I know she is listening.
Later, after Dad came back and they had taken their four-o'clock pills, I had a chance to finish up the details in the basement from the move. I re-arranged some of the things brought down from their bedroom, both in the guest room down there and in the area of the basement where Mom had her drawing table. On her table and in the drawers are dusty pens and unused paper, old landscape plans rolled up and forgotten, photos of dirt, bushes and plots of lands to be landscaped. I just finishing up when I heard Dad and Mom at the top of the stairs. She wanted to come down, but Dad thought she seemed a little frightened at the top of the steps, she hesitated. Left me just enough time to come up with a basket of old photos, and avoid having her go down the steps.
The basket of photos were mostly a huge collection she took during the time the house they live in was being built. From the foundation, to the framing out, to the detailing, to the painting, to the first few days with minimal furniture.. We showed her one or two, she said she didn't remember. I showed her a photo of her on a landscaping job back in 1993. She said she didn't remember. Then she got a little upset, so we stopped.
At one point she became agitated. I settled her into the couch. After two minutes, she became upset again. She didn't know why. I offered to get her up. "yes!" She hummed the word "home" over and over again. I joined her, quietly, as we walked, then at times I harmonized with her. Then she moved her hum to match my note, then we went up another note together. Then back down again. Then I'd harmonize with her again. And then, just like that, she stops and says something "perfectly normal."
Back to the couch again. At five-thirty, I kissed her good night. Dad was starting dinner. I wished them good luck and hoped they would be comfortable in their new sleeping arrangements, all was calm. At home, I started a small campfire, an activity I've found to be very relaxing. Burning wood from the fallen branches in the woods. Back inside, I was working on some video transfers. Dinner would be ready in ten minutes. The phone rings, it's next door.
Dad hands the phone over to Mom. Mom wants me to come over. Be right there! She was still in bed, Dad trying to console her. She was crying and "toning" and her knees and arms were sticking up. "Do you want to get up? Put on your bathrobe, go in the living room?" "Yes."
So, we did that, and she calmed down. And I left about twenty minutes later, Dad cradling Mom on the couch. I could only hope for the best. It was a long, tiring day, and I was in bed earlier than usual.
It's raining today, and it's bath day.
We had a visit from a home health aid, Linda, at around twelve-thirty or so. I told her about what had been going on all morning, and that it was best to just let Mom rest. She was fine with that, and she assisted me move a few books upstairs. She suggested that we order a bed side table to go with the hospital bed. She thought Mom looked pretty colorless that day.
After I went home for an hour for some lunch, I went back around two, and sat with Mom while Dad went out for a walk. I read a chapter or two from "Little Women." Once in a while, she still corrects me when I pronounce a word wrong. Despite how she looks like she is fast asleep, I know she is listening.
Later, after Dad came back and they had taken their four-o'clock pills, I had a chance to finish up the details in the basement from the move. I re-arranged some of the things brought down from their bedroom, both in the guest room down there and in the area of the basement where Mom had her drawing table. On her table and in the drawers are dusty pens and unused paper, old landscape plans rolled up and forgotten, photos of dirt, bushes and plots of lands to be landscaped. I just finishing up when I heard Dad and Mom at the top of the stairs. She wanted to come down, but Dad thought she seemed a little frightened at the top of the steps, she hesitated. Left me just enough time to come up with a basket of old photos, and avoid having her go down the steps.
The basket of photos were mostly a huge collection she took during the time the house they live in was being built. From the foundation, to the framing out, to the detailing, to the painting, to the first few days with minimal furniture.. We showed her one or two, she said she didn't remember. I showed her a photo of her on a landscaping job back in 1993. She said she didn't remember. Then she got a little upset, so we stopped.
At one point she became agitated. I settled her into the couch. After two minutes, she became upset again. She didn't know why. I offered to get her up. "yes!" She hummed the word "home" over and over again. I joined her, quietly, as we walked, then at times I harmonized with her. Then she moved her hum to match my note, then we went up another note together. Then back down again. Then I'd harmonize with her again. And then, just like that, she stops and says something "perfectly normal."
Back to the couch again. At five-thirty, I kissed her good night. Dad was starting dinner. I wished them good luck and hoped they would be comfortable in their new sleeping arrangements, all was calm. At home, I started a small campfire, an activity I've found to be very relaxing. Burning wood from the fallen branches in the woods. Back inside, I was working on some video transfers. Dinner would be ready in ten minutes. The phone rings, it's next door.
Dad hands the phone over to Mom. Mom wants me to come over. Be right there! She was still in bed, Dad trying to console her. She was crying and "toning" and her knees and arms were sticking up. "Do you want to get up? Put on your bathrobe, go in the living room?" "Yes."
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| April 19, 2011 |
So, we did that, and she calmed down. And I left about twenty minutes later, Dad cradling Mom on the couch. I could only hope for the best. It was a long, tiring day, and I was in bed earlier than usual.
It's raining today, and it's bath day.
Wednesday, March 30, 2011
Random Observations
The pattern the last few days, from my perspective, seems to be: Mom rises, has her pills and juice and nibbles on some breakfast. Dozes in chair most of the morning. Has lunch. Dozes some more. We try and get her to participate in little activities (a walk, some exercises, yesterday we took her for a little drive in the car), then more dozing, then at four she takes her pill, then she becomes agitated and confused for a while. This is when I usually go home.
Dad has been amazing. We still need to work on creative food ideas. Somebody needs to write a recipe book for people who are caregivers of people with A.D. Don't look at me, I have a hard enough time coming up with ideas for my own meals.
When Mom gets agitated (which she was very much yesterday, she was depressed and snappy), I believe it boils down to this: she's pissed that she can't communicate or do anything, and she's pissed that she is suffering from this disease.
And I don't blame her one bit.
 |
| March 28, 2011 |
Dad has been amazing. We still need to work on creative food ideas. Somebody needs to write a recipe book for people who are caregivers of people with A.D. Don't look at me, I have a hard enough time coming up with ideas for my own meals.
When Mom gets agitated (which she was very much yesterday, she was depressed and snappy), I believe it boils down to this: she's pissed that she can't communicate or do anything, and she's pissed that she is suffering from this disease.
And I don't blame her one bit.
Friday, March 25, 2011
Persistence And Patience
To be a successful care giver to a person with Alzheimer's Disease, a huge challenge is learning how to read what the person is trying to communicate to you. For what the person says and what the person means is not always in line with one and other.
As an example, just a little while ago, I was sitting in the chair reading, while Mom was laying on the couch, "watching" a movie on Turner Classic and Dad was outside taking a walk. All was quite, until I heard Mom moan, and begin to struggle to try and get up.
"Do you want to get up now, Mom?" I asked.
"Yes."
She grimaced, then she said, "My arm hurts!"
I told her we'd ask Dad if it was okay to give her a Tylenol for the pain when he came back from his walk (she likes to have his approval for this, and I figure it's okay to wait), and I helped her out of the couch. I asked her where she wanted to go, and she decided on the other couch. We decided to sit up in the other couch, instead of laying down. The movie was still on, I settled back into the chair to continue reading, and I told her to keep watching the movie.
She moaned. I asked her if she wanted to continue watching the movie, and she said that she did, but she wanted to watch the other movie, too. She continued to ramble, words coming out that made no sense, and as she went on, she began to get frustrated, and started to weep a little.
So, this is where I had to ask more questions, to find out what she really wanted. Do you want to watch the movie? ("Yes.") Are you comfortable? ("Yes.") Does your arm still hurt? ("Not too bad.") Then she tried to communicate some more, and again, the words made no sense. This is when I said to her something like, "I understand you're trying to tell me something, and you are having a hard time expressing what you really mean. Try not to get frustrated, Mom, let's work this out together."
Finally, it dawned on me what she wanted me to do.
"Do you want me to read to you some more?"
"Yes! I want you to read to me!"
Persistence and patience paid off. I turned off the television, and picked up where I had left off earlier in the day in the book "Little Women," by Louisa May Alcott.
Other times, short-term memory works in your favor. At lunch today, I prepared them both little sandwiches with little sides of fruit, chips and cherry tomatoes. They sat to eat, I did the dishes, then joined them at the table. Mom ate fairly well, for her, then she began to push her plate away, fussing. I asked her to finish chewing before she rose, but no, she wouldn't have it, and she began to say something like, "Don't be like THEM! Let me go!" Agitation rose again.
So, "No problem, let's get up" and we helped her rise. While she was still gaining her balance, I asked her if she'd like to wash down her mouthful of food with her drink. "Yes." She drank. Still standing, I offered her a grape. She ate it. Then a chip. Then she wanted to sit, only at her chair. I helped her to her chair, then brought the plate of food over. I was able to feed her a few more bites of everything with her sitting in her chair. Persistence and patience paid off again.
I noticed Brian, the physical therapist, used the same techniques with her today during his visit. He worked her through a "vigorous" routine, and at times she'd complain, saying she couldn't do it, wanted to stop. Then he'd persist, "Just one more." "You can do, you're stronger than you think." "Great job!" And she'd finish the exercise. Persistence and patience.
Sometimes, you just have to let the person stumble out the words, even if they make no sense, and try and feel the emotion behind the words. If you have any sense of intuition in you at all, you'll get the notion of what the person is trying to say. It could almost be likened to trying to communicate with a person who speaks another language. You listen to the emotion, you read the facial expressions, the hand gestures, read the tone of voice. You apply that to the situation that you are in at that moment. You search and reach and try to find the true meaning behind the words. This requires persistence and patience.
In the end, though, when you do realize what the person is trying to communicate, there is such a great sense of relief and accomplishment. And nothing feels better than letting the person know that you can understand what the person is trying to tell you. The stress is momentarily relieved, and the person suffering with this horrible disease does not feel so misunderstood. For that one moment, the person can feel normal again. That feeling is such a gift for both of you.
As an example, just a little while ago, I was sitting in the chair reading, while Mom was laying on the couch, "watching" a movie on Turner Classic and Dad was outside taking a walk. All was quite, until I heard Mom moan, and begin to struggle to try and get up.
"Do you want to get up now, Mom?" I asked.
"Yes."
She grimaced, then she said, "My arm hurts!"
I told her we'd ask Dad if it was okay to give her a Tylenol for the pain when he came back from his walk (she likes to have his approval for this, and I figure it's okay to wait), and I helped her out of the couch. I asked her where she wanted to go, and she decided on the other couch. We decided to sit up in the other couch, instead of laying down. The movie was still on, I settled back into the chair to continue reading, and I told her to keep watching the movie.
She moaned. I asked her if she wanted to continue watching the movie, and she said that she did, but she wanted to watch the other movie, too. She continued to ramble, words coming out that made no sense, and as she went on, she began to get frustrated, and started to weep a little.
So, this is where I had to ask more questions, to find out what she really wanted. Do you want to watch the movie? ("Yes.") Are you comfortable? ("Yes.") Does your arm still hurt? ("Not too bad.") Then she tried to communicate some more, and again, the words made no sense. This is when I said to her something like, "I understand you're trying to tell me something, and you are having a hard time expressing what you really mean. Try not to get frustrated, Mom, let's work this out together."
Finally, it dawned on me what she wanted me to do.
"Do you want me to read to you some more?"
"Yes! I want you to read to me!"
Persistence and patience paid off. I turned off the television, and picked up where I had left off earlier in the day in the book "Little Women," by Louisa May Alcott.
Other times, short-term memory works in your favor. At lunch today, I prepared them both little sandwiches with little sides of fruit, chips and cherry tomatoes. They sat to eat, I did the dishes, then joined them at the table. Mom ate fairly well, for her, then she began to push her plate away, fussing. I asked her to finish chewing before she rose, but no, she wouldn't have it, and she began to say something like, "Don't be like THEM! Let me go!" Agitation rose again.
So, "No problem, let's get up" and we helped her rise. While she was still gaining her balance, I asked her if she'd like to wash down her mouthful of food with her drink. "Yes." She drank. Still standing, I offered her a grape. She ate it. Then a chip. Then she wanted to sit, only at her chair. I helped her to her chair, then brought the plate of food over. I was able to feed her a few more bites of everything with her sitting in her chair. Persistence and patience paid off again.
I noticed Brian, the physical therapist, used the same techniques with her today during his visit. He worked her through a "vigorous" routine, and at times she'd complain, saying she couldn't do it, wanted to stop. Then he'd persist, "Just one more." "You can do, you're stronger than you think." "Great job!" And she'd finish the exercise. Persistence and patience.
Sometimes, you just have to let the person stumble out the words, even if they make no sense, and try and feel the emotion behind the words. If you have any sense of intuition in you at all, you'll get the notion of what the person is trying to say. It could almost be likened to trying to communicate with a person who speaks another language. You listen to the emotion, you read the facial expressions, the hand gestures, read the tone of voice. You apply that to the situation that you are in at that moment. You search and reach and try to find the true meaning behind the words. This requires persistence and patience.
In the end, though, when you do realize what the person is trying to communicate, there is such a great sense of relief and accomplishment. And nothing feels better than letting the person know that you can understand what the person is trying to tell you. The stress is momentarily relieved, and the person suffering with this horrible disease does not feel so misunderstood. For that one moment, the person can feel normal again. That feeling is such a gift for both of you.
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