That's what Mama Marian has been doing for several hours today. After not sleeping for over 24 hours yesterday, this is a good thing.
So, where are we today? Room 4036, John Dempsey/UCONN Hospital. I can answer that question. Mom cannot. The doctors believe she has frontal lobe dementia that could be caused by any one thing or a mix of things. The MRI shows some change in edema, but nothing significantly different from the July scan. This means that the dementia piece was likely set off by the change in meds (addition of heavy narcotics and opiates), but could be resulting from late radiation encephalopathy, damage from the tumor, or a combination of variables. The brain is a mysterious thing and, clearly, we are still in the dark ages of understanding its workings.
So, the confusion, speech problems, personality changes, etc... are here to stay for now. However, they are much better than they were two weeks ago when we first took Mama Marian to the ER. The paranoia is less, the agitation and extreme mood changes seem to have died down, and she has been out of restraints for 24 hours now! I was informed by the attending internist yesterday that we are "lucky" that Mom has "pleasant dementia" for the most part. She is pretty happy much of the time, though difficult to understand, and is quite a talker. She cradles the teddy bear I brought to her and refers to it as "the baby". And, her ferocious sense of humor has been keeping the fourth floor nursing staff very amused. She did rip out another IV yesterday and sent blood spurting everywhere, but it was apparently not in agitation or anger... just due to some confusion.
We are waiting on some formalities right now regarding Mama Marian's discharge placement. Hopefully she will be able to get to the Hebrew Home in West Hartford, where we can work with McLean Hospice. They are supposed to come "interview" her sometime soon and maybe we can get her transferred by early next week.
Hopefully Mama Marian will continue to snore the day away and catch up on some much needed sleep. We are keeping our fingers crossed for continued improvement!
Thursday, August 13, 2009
Tuesday, August 11, 2009
Tuesday, August 11th- Day 11 at UCONN
Mama Marian had a great day yesterday. Really, it was a great day. For the first time in weeks, I felt like maybe this would all get a little less horrible. Mom had visitors galore yesterday; many of whom stopped by while she was sleeping. Yes, sleeping, I said. She slept from 4am to 8am then from 10:30am to 3:15pm. And when she awoke, my mom was back for a bit. She was more lucid than she has been in 11 or 12 days, was not in pain, and was able to express herself more clearly.
Arnie visited first, then Judy M., then Mary T. Mom slept through them all. Then May and Heidi came around 1pm and watched the beautiful sleep/snore of Mama Marian until the sitter (Igor the Viking, I have named him) woke her up to change the bedding. She was in such a good mood and delighted to see her visitors! Around 5pm or so Hersch arrived and then around 6 Andrea came. Although Igor did not take as much pleasure in our little gathering, Mama Marian was the best I have seen her in weeks. She even ate her entire grilled cheese sandwich, with some added forcefulness by the Viking!
Last night Mom was tearful while talking with us and admitted that she is still very afraid to die. She acknowledged that she feels safest in the hospital setting (that was definitely news to me!) and that she does not feel like she can come home now. And then she asked me to come and live with her "for 100 years". I told her that I would.
Dad visited in the evening and had some time with Mom before she fell asleep around 9pm. She had been out of restraints for the majority of the day.
However, this morning I returned around 7am and found her back in the mesh, strappy vest (fashion statement, indeed) and leg restraints. Apparently she had refused her nightime medications and they decided to give them to her via injection and IV. It was not a nice night for Mom and she did not get any more rest afterward. After I arrived, though, the strappy vest was unzipped and returned to its spot on the sill and the blue leg cuffs were admonished from the room, hopefully not to return.
Today was another pretty good day for Mama Marian and I am hoping that she has a peaceful evening. Maybe I will go back to see her around med-time and see if she might take her pills for me like she did this morning and has on many other occasions. We've coined it, "the pill machine", as Mom is a champ at taking multiple, large pills in one giant swallow and I help her by tossing them down her throat and then getting her to chase down some water. She always giggles about it before and after with a disgusted expression in between when she gets a taste of that plastic pill chalkiness.
We are looking at a place called The Hebrew Home in West Hartford. It is about 25 minutes from home and Mom could do Hospice there with some extra supervision for some of her wilder, more expressive behaviors. Mama Marian told me this morning that she heard this "awful woman yelling" this morning and the screams were "coming from the basement". After a subtle pause she informed me that it was, in fact, her who was yelling. I must admit, I was not surprised. She has an odd awareness of things that she does or things that have taken place, whether real, imaginary, or simply products of dreamland. We spent a good deal of yesterday reinforcing that May and Hersch did not die while on vacation and that Dad did not have an extra-marital affair with a woman at Brown Elementary School while he was a student there.
The family room downstairs is almost done. Putt and another worker have been at the house daily for about a week now and they have done an incredible job. I update Mama Marian daily on my bird sightings, though most of them I only know by coloring and size. My favorite brand of feeder bird is the "tufted tit mouse" and I have been spying on them regularly from the kitchen window. Maybe Mom will get a room with a window and she can educate me further on the avian species. In the meantime, I continue to make hummingbird food for her feeders and Dad gets the giant pole with a coffee can attached out every couple of days to pile seed into the bear/raccoon/squirrel/people-proof feeder in our backyard. I'm also trying to keep the house plants watered... even the stupid orchids that just sit there refusing to sprout a thing for me.
I miss Mama Marian and am trying to come to terms with "how things are today" instead of getting all stuck in what was and what I hope will be. It's not easy in the least, but I find myself laughing at things she would appreciate, taking joy in what she has always delighted in so simply, and being thankful for our family and extended families everywhere.
Arnie visited first, then Judy M., then Mary T. Mom slept through them all. Then May and Heidi came around 1pm and watched the beautiful sleep/snore of Mama Marian until the sitter (Igor the Viking, I have named him) woke her up to change the bedding. She was in such a good mood and delighted to see her visitors! Around 5pm or so Hersch arrived and then around 6 Andrea came. Although Igor did not take as much pleasure in our little gathering, Mama Marian was the best I have seen her in weeks. She even ate her entire grilled cheese sandwich, with some added forcefulness by the Viking!
Last night Mom was tearful while talking with us and admitted that she is still very afraid to die. She acknowledged that she feels safest in the hospital setting (that was definitely news to me!) and that she does not feel like she can come home now. And then she asked me to come and live with her "for 100 years". I told her that I would.
Dad visited in the evening and had some time with Mom before she fell asleep around 9pm. She had been out of restraints for the majority of the day.
However, this morning I returned around 7am and found her back in the mesh, strappy vest (fashion statement, indeed) and leg restraints. Apparently she had refused her nightime medications and they decided to give them to her via injection and IV. It was not a nice night for Mom and she did not get any more rest afterward. After I arrived, though, the strappy vest was unzipped and returned to its spot on the sill and the blue leg cuffs were admonished from the room, hopefully not to return.
Today was another pretty good day for Mama Marian and I am hoping that she has a peaceful evening. Maybe I will go back to see her around med-time and see if she might take her pills for me like she did this morning and has on many other occasions. We've coined it, "the pill machine", as Mom is a champ at taking multiple, large pills in one giant swallow and I help her by tossing them down her throat and then getting her to chase down some water. She always giggles about it before and after with a disgusted expression in between when she gets a taste of that plastic pill chalkiness.
We are looking at a place called The Hebrew Home in West Hartford. It is about 25 minutes from home and Mom could do Hospice there with some extra supervision for some of her wilder, more expressive behaviors. Mama Marian told me this morning that she heard this "awful woman yelling" this morning and the screams were "coming from the basement". After a subtle pause she informed me that it was, in fact, her who was yelling. I must admit, I was not surprised. She has an odd awareness of things that she does or things that have taken place, whether real, imaginary, or simply products of dreamland. We spent a good deal of yesterday reinforcing that May and Hersch did not die while on vacation and that Dad did not have an extra-marital affair with a woman at Brown Elementary School while he was a student there.
The family room downstairs is almost done. Putt and another worker have been at the house daily for about a week now and they have done an incredible job. I update Mama Marian daily on my bird sightings, though most of them I only know by coloring and size. My favorite brand of feeder bird is the "tufted tit mouse" and I have been spying on them regularly from the kitchen window. Maybe Mom will get a room with a window and she can educate me further on the avian species. In the meantime, I continue to make hummingbird food for her feeders and Dad gets the giant pole with a coffee can attached out every couple of days to pile seed into the bear/raccoon/squirrel/people-proof feeder in our backyard. I'm also trying to keep the house plants watered... even the stupid orchids that just sit there refusing to sprout a thing for me.
I miss Mama Marian and am trying to come to terms with "how things are today" instead of getting all stuck in what was and what I hope will be. It's not easy in the least, but I find myself laughing at things she would appreciate, taking joy in what she has always delighted in so simply, and being thankful for our family and extended families everywhere.
Sunday, August 9, 2009
Difficult Decisions
Ugh... It's 6pm on Sunday night. Mama Marian is back in restraints with one leg over her padded bed rail and her hands busy picking at the blankets. She just informed me that she does not think that the dog has been fed yet today. She then asked me, "when did you become the ace of your group?" I tried to give her a curly fry and she smacked it out of my hand. She's also been talking to "the person on the other end" of the one-way intercom and leaving voicemails aloud without a phone.
This is not easy... and I'm just a visitor here at UCONN Hospital. Mom has a one to one "sitter", a nurse, several doctors, housecleaning, and room service here. Dad and I have a decision to make and we need to make it soon. We could take Mom home with Hospice in place a couple of hours a few times each week. We also might be able to transfer her to Branford Hospice, an inpatient Hospice, about an hour and 15 minutes from home. If she does go there, though, they require a two month or less prognosis and she would have to be sedated somehow because they do not allow patients needing one to one supervision or restraints. Her prognosis is, at this point, unknown because of failed attempts at getting another MRI. The CT scan does not give enough information to determine the extent of damage or infiltration of the tumor, though it does show a seemingly stable level of edema.
The decision feels like the hardest one yet; harder than the DNR orders that we signed last week, harder than the call to Boston to cancel her scheduled treatments. We want Mama Marian to be home. We would love for her to be where things are familiar, where there are no constant beeps, unknown people coming in and out, no IVs, no intercoms, code blues, etc... But we don't want her to come home if we can't manage her and keep her comfortable. We don't want to bring Mom home just to have to bring her back to some hospital or transfer her to inpatient Hospice. Transitions are nightmarish these days; just changing the bed pad under her requires two people and always brings agitation, yelling, and the almighty death grip. Little changes, movements, extra noise, etc... seem to terrify her and the immediate response is defensive and hostile. And she still isn't sleeping. In fact, through the duration of her week-long hospital stay she has slept about 15-20 hours total. For the most part she has been only eating about 20-30% of her meals. Mama Marian continues to be "on the go" and seems to be relentlessly trying to get out of bed "to leave" and remains restless even when she is lying down. Thankfully, though, she has not had much pain at all over the past few days.
So, here we are with a choice that we are not yet sure is fully ours to make. Tomorrow we will be able to talk more with the social worker, case manager, doctors, Hospice, and Branford. We were hoping that our decision would be a little easier or more clear after the weekend, but things remain much the same as they did last week.
This is not easy... and I'm just a visitor here at UCONN Hospital. Mom has a one to one "sitter", a nurse, several doctors, housecleaning, and room service here. Dad and I have a decision to make and we need to make it soon. We could take Mom home with Hospice in place a couple of hours a few times each week. We also might be able to transfer her to Branford Hospice, an inpatient Hospice, about an hour and 15 minutes from home. If she does go there, though, they require a two month or less prognosis and she would have to be sedated somehow because they do not allow patients needing one to one supervision or restraints. Her prognosis is, at this point, unknown because of failed attempts at getting another MRI. The CT scan does not give enough information to determine the extent of damage or infiltration of the tumor, though it does show a seemingly stable level of edema.
The decision feels like the hardest one yet; harder than the DNR orders that we signed last week, harder than the call to Boston to cancel her scheduled treatments. We want Mama Marian to be home. We would love for her to be where things are familiar, where there are no constant beeps, unknown people coming in and out, no IVs, no intercoms, code blues, etc... But we don't want her to come home if we can't manage her and keep her comfortable. We don't want to bring Mom home just to have to bring her back to some hospital or transfer her to inpatient Hospice. Transitions are nightmarish these days; just changing the bed pad under her requires two people and always brings agitation, yelling, and the almighty death grip. Little changes, movements, extra noise, etc... seem to terrify her and the immediate response is defensive and hostile. And she still isn't sleeping. In fact, through the duration of her week-long hospital stay she has slept about 15-20 hours total. For the most part she has been only eating about 20-30% of her meals. Mama Marian continues to be "on the go" and seems to be relentlessly trying to get out of bed "to leave" and remains restless even when she is lying down. Thankfully, though, she has not had much pain at all over the past few days.
So, here we are with a choice that we are not yet sure is fully ours to make. Tomorrow we will be able to talk more with the social worker, case manager, doctors, Hospice, and Branford. We were hoping that our decision would be a little easier or more clear after the weekend, but things remain much the same as they did last week.
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