LBD is truly an enigma. There are no sure steps or phases into which the patient slips - that is until later stages of the illness. Then, as with any other dementia, the brain has begun to slip into another level - one in which signals are not connecting and the messages cease to carry along the synapses to allow the body to continue. This seems to be the case with Mom; her lack of appetite (although at times it resurges, then fades just as quickly), her willingness to walk or not, her speech, and her wakefulness.
Monday, Labor Day, we had a meeting with the Hospice Nurse. My eldest brother joined us, and Mom seemed unaware of what was taking place. She dabbled at her breakfast, eating once in a while - but never finishing. She ate only half of what was on her plate, but the entire yogurt.
The nurse gave us information about the services they could provide and Mom seemed unexceptionally involved - finding distractions and just stoically sitting there until there was a noise or some activity that caught her attention.
We received all the information about who would be coming, how often (it will be wonderful for Mom to be receiving all this attention!), and what they would be able to provide. The one subject they broached was that of the funeral arrangements - call me old-fashioned, but for me it seems a bit cold and tacky to discuss this in front of someone who cannot speak for themselves -we don’t know what she understands or recognizes in her brain at this time.
After this had ended, my brother took his leave, rubbing Mom on the head and kissing her forehead giving her a good-natured goodbye. When he did this, Mom’s eyes sparkled and she had the look in her eyes that I’d not seen in ages - it was the look she used to get when she was thinking of what to do next, and this would naturally lead to her swinging out her arm and hitting him while she said, “Pow!” with a laugh. It ended only with that look and her requisite smile.
I did speak with the staff, and they informed me that Mom had just been awakened a half hour before the meeting - suggesting that she was sleeping a great deal, and this could have accounted for her not eating much.
At one point, Mom saw one of the residents (a man) walking across the room. She called out our father’s name, believing it was he who was there. You could hear the furtiveness in her soft call. I told her it was Pat, but she kept her eye on him.
I later bumped into the nurse and we fixed the POLST form - which is the one that helps with the DNR and end-of-life procedures. I had discovered a mistake I’d made earlier and tried to rectify it, but I had made some gaffs, so she helped me do it correctly.
Tuesday, Mom ate both breakfast and lunch. She also went to BINGO. She was visited upon by the hospice nurse, as well. Perhaps the visits of the previous day helped with her activity and eating - but that’s pure conjecture.
Wednesday, the hospice nurse had come as did Connie and Jean. At this point I’ll allow Jean’s words to describe the visit:
We were at St. Anthony's from11:05 to 1:10. One of the workers said Norma was still in bed, had not had breakfast. She was awake when we walked into her room.
Norma sat up, clothed except for outer pants. I asked Morina or Lynn if she knew where pants were; my choice might have been refused. Linn, I think, brought out dark blue pants; Norma said they were too small.
Nope! She did get them on, then agreed to let Lynn put on her stockings, then the white sox, then her Sketchers. Connie and I said we would go with her to have breakfast. As Norma seemed to be about to sit on her recliner, we encouraged her to come to the big room.
She asked, "How far is it?"
and we said just a few feet. (I was gently pushing her left side to keep her from sitting.) Connie and I double-teamed her. We do that often. (Is that the phrase?)
Out came a good breakfast: a big glass of juice, scrambled eggs, a banana, piece of toast with jelly and a cup of coffee (but not at first). Norma asked for salt, was told they had only pepper.
The ladies were offering Connie and me juice, coffee, later, soup. We all had a piece of the pastry offered. Others were eating lunch. Then we suggested a little walk in the garden.
Up Norma got--slowly, but she was willing to go with us. Blue skies and warm by then. The walk extended to the bench outside her room. I moved a chair so Connie could sit with us in the shade; easier on her eyes. After a while Jennifer (the hospice nurse) appeared. We said our goodbyes, saying they could have a chat.
Norma did talk, with her new, softer voice. I do not recall a sentence that made sense--just phrases.
But we filled in. It was a pleasant visit.
Mom ate breakfast and some lunch that day.
Thursday, Mom enjoyed breakfast and lunch but ate no dinner. Her energy was low. They were able to manage to have her shower (most likely with help).
On Friday, Mom ate all three meals! She was visited by the hospice nurse and they ascertained she wasn’t ready, yet, for a wheelchair, although her strength seemed low. However, something must have clicked for her to eat all three meals!
Saturday, Mom claimed she went to BINGO, and she, once again, ate all three meals! Her attitude was increasingly better, too.
Today, Sunday, Mom ate breakfast but was too full to eat any lunch. Leddy was helping her dress, and Mother voiced her displeasure with the help. However, she did tell Leddy, “I really do enjoy seeing you!” What a gift for Leddy who does so much for her!
My nephew, Alex, from Seattle, came for a visit and Mom very much enjoyed seeing him once again, although she really didn’t recall who he was - she was entranced by his green flowing hair and having the company. She didn’t exactly pepper him with questions, but she spoke the most cogently I’ve heard in awhile - which isn’t really saying much, but she was able to have snippets of conversation.
I did present her with a card Connie had sent to my house for her. She wasn’t able to ingest much of what it said and opposed my helping her. However, she was content that she received some mail.
Earlier in the day, I happened to discover, Mom had gone for a walk (with some other residents) into the garden and over to the other cottage. The ladies were chatting about God knows what and laughing. Reina (her aide) said that it was so good to see her walking out there and laughing. Mom denied this as though it were a terrible accusation. Oh well.
She stated that she had no books to read and that she would very much like some. I pulled some out from her pile and she began to “read” as we left. I also left her some chocolate bars on her end table for her to nibble, as well as an orange from her fridge which was a gift from Jean.
To sum it up, Mom bounced back in the past two days from the low points of the early week. What this means, I haven’t a clue, but it was a gift that we may not be able to see much more. She even gave me the evil eye with a hint of a smile (seen above, but she couldn’t hold the smile while I had her pose).
Monday, Labor Day, we had a meeting with the Hospice Nurse. My eldest brother joined us, and Mom seemed unaware of what was taking place. She dabbled at her breakfast, eating once in a while - but never finishing. She ate only half of what was on her plate, but the entire yogurt.
 |
| Mom gives me the "evil eye"...a sign that her humor still exists. |
The nurse gave us information about the services they could provide and Mom seemed unexceptionally involved - finding distractions and just stoically sitting there until there was a noise or some activity that caught her attention.
We received all the information about who would be coming, how often (it will be wonderful for Mom to be receiving all this attention!), and what they would be able to provide. The one subject they broached was that of the funeral arrangements - call me old-fashioned, but for me it seems a bit cold and tacky to discuss this in front of someone who cannot speak for themselves -we don’t know what she understands or recognizes in her brain at this time.
After this had ended, my brother took his leave, rubbing Mom on the head and kissing her forehead giving her a good-natured goodbye. When he did this, Mom’s eyes sparkled and she had the look in her eyes that I’d not seen in ages - it was the look she used to get when she was thinking of what to do next, and this would naturally lead to her swinging out her arm and hitting him while she said, “Pow!” with a laugh. It ended only with that look and her requisite smile.
I did speak with the staff, and they informed me that Mom had just been awakened a half hour before the meeting - suggesting that she was sleeping a great deal, and this could have accounted for her not eating much.
At one point, Mom saw one of the residents (a man) walking across the room. She called out our father’s name, believing it was he who was there. You could hear the furtiveness in her soft call. I told her it was Pat, but she kept her eye on him.
I later bumped into the nurse and we fixed the POLST form - which is the one that helps with the DNR and end-of-life procedures. I had discovered a mistake I’d made earlier and tried to rectify it, but I had made some gaffs, so she helped me do it correctly.
Tuesday, Mom ate both breakfast and lunch. She also went to BINGO. She was visited upon by the hospice nurse, as well. Perhaps the visits of the previous day helped with her activity and eating - but that’s pure conjecture.
Wednesday, the hospice nurse had come as did Connie and Jean. At this point I’ll allow Jean’s words to describe the visit:
We were at St. Anthony's from11:05 to 1:10. One of the workers said Norma was still in bed, had not had breakfast. She was awake when we walked into her room.
Norma sat up, clothed except for outer pants. I asked Morina or Lynn if she knew where pants were; my choice might have been refused. Linn, I think, brought out dark blue pants; Norma said they were too small.
Nope! She did get them on, then agreed to let Lynn put on her stockings, then the white sox, then her Sketchers. Connie and I said we would go with her to have breakfast. As Norma seemed to be about to sit on her recliner, we encouraged her to come to the big room.
She asked, "How far is it?"
and we said just a few feet. (I was gently pushing her left side to keep her from sitting.) Connie and I double-teamed her. We do that often. (Is that the phrase?)
Out came a good breakfast: a big glass of juice, scrambled eggs, a banana, piece of toast with jelly and a cup of coffee (but not at first). Norma asked for salt, was told they had only pepper.
The ladies were offering Connie and me juice, coffee, later, soup. We all had a piece of the pastry offered. Others were eating lunch. Then we suggested a little walk in the garden.
Up Norma got--slowly, but she was willing to go with us. Blue skies and warm by then. The walk extended to the bench outside her room. I moved a chair so Connie could sit with us in the shade; easier on her eyes. After a while Jennifer (the hospice nurse) appeared. We said our goodbyes, saying they could have a chat.
Norma did talk, with her new, softer voice. I do not recall a sentence that made sense--just phrases.
But we filled in. It was a pleasant visit.
Mom ate breakfast and some lunch that day.
Thursday, Mom enjoyed breakfast and lunch but ate no dinner. Her energy was low. They were able to manage to have her shower (most likely with help).
On Friday, Mom ate all three meals! She was visited by the hospice nurse and they ascertained she wasn’t ready, yet, for a wheelchair, although her strength seemed low. However, something must have clicked for her to eat all three meals!
Saturday, Mom claimed she went to BINGO, and she, once again, ate all three meals! Her attitude was increasingly better, too.
Today, Sunday, Mom ate breakfast but was too full to eat any lunch. Leddy was helping her dress, and Mother voiced her displeasure with the help. However, she did tell Leddy, “I really do enjoy seeing you!” What a gift for Leddy who does so much for her!
 |
| Mom reads the card from Connie |
My nephew, Alex, from Seattle, came for a visit and Mom very much enjoyed seeing him once again, although she really didn’t recall who he was - she was entranced by his green flowing hair and having the company. She didn’t exactly pepper him with questions, but she spoke the most cogently I’ve heard in awhile - which isn’t really saying much, but she was able to have snippets of conversation.
I did present her with a card Connie had sent to my house for her. She wasn’t able to ingest much of what it said and opposed my helping her. However, she was content that she received some mail.
Earlier in the day, I happened to discover, Mom had gone for a walk (with some other residents) into the garden and over to the other cottage. The ladies were chatting about God knows what and laughing. Reina (her aide) said that it was so good to see her walking out there and laughing. Mom denied this as though it were a terrible accusation. Oh well.
She stated that she had no books to read and that she would very much like some. I pulled some out from her pile and she began to “read” as we left. I also left her some chocolate bars on her end table for her to nibble, as well as an orange from her fridge which was a gift from Jean.
To sum it up, Mom bounced back in the past two days from the low points of the early week. What this means, I haven’t a clue, but it was a gift that we may not be able to see much more. She even gave me the evil eye with a hint of a smile (seen above, but she couldn’t hold the smile while I had her pose).
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