Well, I set in motion a choice for Mom to move into assisted living, but since there is no certain date, I needed to think through how to manage until that time. It is still very hard for me to consider Mom not being here. I was out of town for two days and when I returned, Mom was grumpy when I first greeted. When I went down again, Marilyn was getting her into bed. She looked over at me smiling and raising her head to watch me. She had that motherly look she gives me sometimes - you know the kind that says she is happy to see me because I am her daughter.
I realize I am avoiding going down to see her as much as possible so I don't feel any worse than I do.
At the same time, I put in an ad for help on the weekends. If someone reliable comes in for mornings on the weekend, I will then be able to take care of her in the afternoon, but have my mornings free. This is becoming increasingly important to me for my mental health. Once I accepted that I was not able to work full time and handle Mom's care as well, my state of mind has been more at ease. That decision, at least, has not caused me any feeling of regret
I have had several responses to my ad. I need to contact all people who have responded tomorrow and interview the most likely. One candidate is a solid person, but not as experienced as others. I liked her, but think she may be happier in a research environment. I have had a few respond with CNA certification and some in school for the same. In any case, if I can find someone reliable on the weekends, this will help us until Mom can move.
She looks more frail and worn each time I see her.
Monday, January 16, 2012
Tuesday, January 10, 2012
A Decision
Suzy contacted me to let me know that Marion, at Let Us Care, had taken a private pay client. She is a business woman after all.
Suzy had mentioned Lilley Lodge, the home in North Pole when she promised to check with Marion. She mentioned it again today, so I called Teri. She had just arranged to have the space she had available taken. However, she does have a resident that she does not expect to be there much longer. She was not sure when the space would be available, but was I willing to wait if Mom didn't need to be placed immediately.
I said that would be fine.
After three days of three messes I needed to clean up, I reached the point where I was willing to let go and let Mom move out. I realize she doesn't want to leave her home. We don't really want it, but I am not equipped to care for her the way they are at Lilley Lodge. They watch their clients as carefully as the caregivers at FRA do. I was concerned about this because the messes Mom makes are chiefly due to not being watched closely enough to get her to the bathroom on time. Teri told me they are constantly adjusting bath room breaks for their clients based on their needs.
I also remember that she has two people on staff for her 8 residents all of the time. And they all eat together, and their rooms face the common room. As it turns out, she can have a private room, so I think this will work out. Teresa and I talked it over and we realized we would not be able to drive down after work because Mom is now going to bed so early. But we could alternate driving down to North Pole on weekends to take Mom for Chinese food. She really likes that restaurant because it reminds her of growing up in California. They would drive from Laton to Hanford for Chinese food (or Mexican food) once a week.
I think this could work out.
Suzy had mentioned Lilley Lodge, the home in North Pole when she promised to check with Marion. She mentioned it again today, so I called Teri. She had just arranged to have the space she had available taken. However, she does have a resident that she does not expect to be there much longer. She was not sure when the space would be available, but was I willing to wait if Mom didn't need to be placed immediately.
I said that would be fine.
After three days of three messes I needed to clean up, I reached the point where I was willing to let go and let Mom move out. I realize she doesn't want to leave her home. We don't really want it, but I am not equipped to care for her the way they are at Lilley Lodge. They watch their clients as carefully as the caregivers at FRA do. I was concerned about this because the messes Mom makes are chiefly due to not being watched closely enough to get her to the bathroom on time. Teri told me they are constantly adjusting bath room breaks for their clients based on their needs.
I also remember that she has two people on staff for her 8 residents all of the time. And they all eat together, and their rooms face the common room. As it turns out, she can have a private room, so I think this will work out. Teresa and I talked it over and we realized we would not be able to drive down after work because Mom is now going to bed so early. But we could alternate driving down to North Pole on weekends to take Mom for Chinese food. She really likes that restaurant because it reminds her of growing up in California. They would drive from Laton to Hanford for Chinese food (or Mexican food) once a week.
I think this could work out.
Monday, January 9, 2012
Nothing is Perfect
The problem is I keep trying the perfect situation for my Mom and it doesn't exist.
Hope Haven has good staff and good socialization, but limited ground floor space and requires a long walk to the common room. The living area in the apartment is not currently used and when Mom was not well, nor getting enough oxygen, this would have been a huge stumbling block for her.
Lilley Lodge has a nice feel to it, although very small. Teri is very competent and the residents seem happy. However, it requires sharing a room and is in North Pole - a long way for me to go on even a weekly basis and I won't see Mom as often as I'd like.
Let Us Care is a good set up with spacious rooms and all facing the dining area and common room. It is close to campus so I could walk over to see Mom daily for a short while at least. But from what I can tell, there is little social interaction among the residents. They all eat and wake on their individual schedules instead of as a household.
Caring Bridges has good staffing and a lot of social interaction. But it is crowded and Waiver recipients share a room. Not having any privacy, they all end up flocking out into the main rooms. I felt Mom would emotionally tire since she is a private person when home.
What I want is a home that has the layout and feel of Let Us Care with the socialization of Hope Haven and Lilley Lodge. I want the staffing levels of Caring Bridges. I want the care giving qualities of all four providers - so that is the consistent point between them.
What I want is my Mom to be herself instead of going into this headlong decline. What I want is for her to stay home until she passes. That is what I really want, but I am tiring. I have a few hours of PCA and respite care for the weekend, but will not ask Marilyn to come those days as well. Yet, the prospect of doing what we are doing for another year seems impossible to me.
This weekend, both days she had gotten up on her own and attempted to clean herself, but without success. Both days I needed her to get into the shower in order to get clean. Two days this week, I replaced sheets from her having sat on the bed before being cleaned. She barely moved from her chair all day yesterday and I constantly had to keep the oxygen on her.
Who else would give her that kind of one-on-one care? She needs far more than most of those I saw at the Assisted Living homes I visited. This is my decision and I hate it. I want the perfect situation for her and it doesn't exist.
In case Let Us Care doesn't work out, I should see if I can find someone to work those weekend hours - long enough to come in, get her up, clean and fed for breakfast.
Hope Haven has good staff and good socialization, but limited ground floor space and requires a long walk to the common room. The living area in the apartment is not currently used and when Mom was not well, nor getting enough oxygen, this would have been a huge stumbling block for her.
Lilley Lodge has a nice feel to it, although very small. Teri is very competent and the residents seem happy. However, it requires sharing a room and is in North Pole - a long way for me to go on even a weekly basis and I won't see Mom as often as I'd like.
Let Us Care is a good set up with spacious rooms and all facing the dining area and common room. It is close to campus so I could walk over to see Mom daily for a short while at least. But from what I can tell, there is little social interaction among the residents. They all eat and wake on their individual schedules instead of as a household.
Caring Bridges has good staffing and a lot of social interaction. But it is crowded and Waiver recipients share a room. Not having any privacy, they all end up flocking out into the main rooms. I felt Mom would emotionally tire since she is a private person when home.
What I want is a home that has the layout and feel of Let Us Care with the socialization of Hope Haven and Lilley Lodge. I want the staffing levels of Caring Bridges. I want the care giving qualities of all four providers - so that is the consistent point between them.
What I want is my Mom to be herself instead of going into this headlong decline. What I want is for her to stay home until she passes. That is what I really want, but I am tiring. I have a few hours of PCA and respite care for the weekend, but will not ask Marilyn to come those days as well. Yet, the prospect of doing what we are doing for another year seems impossible to me.
This weekend, both days she had gotten up on her own and attempted to clean herself, but without success. Both days I needed her to get into the shower in order to get clean. Two days this week, I replaced sheets from her having sat on the bed before being cleaned. She barely moved from her chair all day yesterday and I constantly had to keep the oxygen on her.
Who else would give her that kind of one-on-one care? She needs far more than most of those I saw at the Assisted Living homes I visited. This is my decision and I hate it. I want the perfect situation for her and it doesn't exist.
In case Let Us Care doesn't work out, I should see if I can find someone to work those weekend hours - long enough to come in, get her up, clean and fed for breakfast.
Saturday, January 7, 2012
Move into Assisted Living or Remain Here
I spoke with Mom's care coordinator, Suzy, at FRA about Marion Griffin's home. Marion had said she would call Suzy to speak about her moving in. She also said she would call us after she had another person look at the room. She told me this person was referred to her by the State of Alaska.
She has not called. Suzy offered to call her for me. She said that if we wanted to move Mom into assisted living, we should do it when there was an opening. As we know from my previous visits, openings to good homes are few and far between. On the other hand, if we were thinking of keeping mom at home because she had improved, I should let her know. But she did remind me that she is all right now, but if I needed to place her later, I would be in the same position of having to wait until there was an opening.
Gary and I talked it over and if Marion will take Mom, we want to place her. This is going to be hard for both of us. Gary kept saying that he thought Mom was upset about going to Marion's. He said he couldn't figure out what was upsetting and so asked if she was upset about moving to a new home. She said yes. That was interesting because when we were there, she said she was willing to move there. I thought it was due to the fact that we changed her coat.
I don't think Gary should put words into her mouth or suggest to her what is bothering her, but he could be right. The point is that this move will be upsetting to all of us. We can't really rent her apartment out because she may not fit in and so would need to come back. So in addition to our emotional upheaval, it has an tenuous feel. I feel unhappy. I know I can't keep taking care of her without compromising my health and Gary's, but I feel so bad about it.
I think she could get better care. I don't know that since I am not in those homes on a daily basis, but I think she would have more contact. I wish Mom had been feeling better when we went to Hope Haven. I do know that they check on the clients regularly when they are not in the common room. I do know they have activities to keep them interacting with each other.
At Marion's home, everyone eats when they want, so I don't know that Mom would ever be with others. And since Marion has not called me, not any of the times I have visited when she said she would call me to let me know what was happening with the room, I doubt she will now.
She has not called. Suzy offered to call her for me. She said that if we wanted to move Mom into assisted living, we should do it when there was an opening. As we know from my previous visits, openings to good homes are few and far between. On the other hand, if we were thinking of keeping mom at home because she had improved, I should let her know. But she did remind me that she is all right now, but if I needed to place her later, I would be in the same position of having to wait until there was an opening.
Gary and I talked it over and if Marion will take Mom, we want to place her. This is going to be hard for both of us. Gary kept saying that he thought Mom was upset about going to Marion's. He said he couldn't figure out what was upsetting and so asked if she was upset about moving to a new home. She said yes. That was interesting because when we were there, she said she was willing to move there. I thought it was due to the fact that we changed her coat.
I don't think Gary should put words into her mouth or suggest to her what is bothering her, but he could be right. The point is that this move will be upsetting to all of us. We can't really rent her apartment out because she may not fit in and so would need to come back. So in addition to our emotional upheaval, it has an tenuous feel. I feel unhappy. I know I can't keep taking care of her without compromising my health and Gary's, but I feel so bad about it.
I think she could get better care. I don't know that since I am not in those homes on a daily basis, but I think she would have more contact. I wish Mom had been feeling better when we went to Hope Haven. I do know that they check on the clients regularly when they are not in the common room. I do know they have activities to keep them interacting with each other.
At Marion's home, everyone eats when they want, so I don't know that Mom would ever be with others. And since Marion has not called me, not any of the times I have visited when she said she would call me to let me know what was happening with the room, I doubt she will now.
Friday, January 6, 2012
Missed Opportunities
It appears that we missed the opportunity for Mom to move into Hope Haven with Gladys Egger. At the time I needed to make a decision, Mom was not well. Since that time she has been getting sufficient oxygen due to the good work of the Apria tech and her electrolytes are back in balance.
She is doing more of the work of dressing herself (putting on her own pants, shoes and socks) and does much of her shirt which is harder because of where she broke her shoulder. She is making it to the toilet on time, although the time for her to be fully independent in that regard is long past. But my point is that these are all things that would have permitted her to more successfully integrate into that home.
I have not heard anything from Marion Griffin at Let Us Care.
She is doing more of the work of dressing herself (putting on her own pants, shoes and socks) and does much of her shirt which is harder because of where she broke her shoulder. She is making it to the toilet on time, although the time for her to be fully independent in that regard is long past. But my point is that these are all things that would have permitted her to more successfully integrate into that home.
I have not heard anything from Marion Griffin at Let Us Care.
Wednesday, January 4, 2012
Temperature Cut Off for Excursions
We do have a temperature below which I won't send Mom to FRA, -30F. By that I mean that it may be colder than that early in the morning, but the highs aren't expected to be too much colder than -30F. Should anything happen, an accident, a flat tire, or anything that required Mom to be exposed to the cold for any length of time, it would easily become life threatening in a matter of minutes. Mom would not know what to do to protect herself.
An example of that is in her choice of gloves. She wore gloves she'd had forever for years here. They weren't warm enough. So for Christmas, Teresa bought her some wool gloves and then two sets of mittens. One pair of mittens are also wool, and would provide protection at slightly colder temperatures than what is safe for the wool gloves, and those two combined provide yet another level of protection. A second pair of mittens, when drawn over the wool gloves provide the maximum.
Mom refused to wear the mittens. There is no way she will accept that mittens are wamer than gloves. She doesn't like them.
We also bought her a new hat and a new coat. She loves the hat, but is having issues with the coat. It is long, its rated to -50F and a lovely shade of periwinkle blue. The coat reaches down below her boots, so she is not exposed to direct cold throughout her body.
Her coats were always beige with collars. She put her poodle pin and whatever else she favored on the labels of her other coats. This coat doesn't have a true lapel and she fussed and worried about it all weekend, finally putting it away in the closet because it made her unhappy. She is no longer bracing her thin little body against the cold when she walks outside to get in the car, but she doesn't truly notice that. I notice it, but in her mental state, it doesn't register she is safer and more comfortable.
Marilyn is ill today, so we picked her up. As I watched her come out with Gary I saw this petite, woman coming toward me. Her wool felted hat was secure upon her head. Her coat was fully zipped up and snapped all the way down. She had her wool gloves on. As she walked toward the car, I suddenly realized she really looked like an Alaskan elder should look - totally bundled up, moving carefully through pounds of down!
An example of that is in her choice of gloves. She wore gloves she'd had forever for years here. They weren't warm enough. So for Christmas, Teresa bought her some wool gloves and then two sets of mittens. One pair of mittens are also wool, and would provide protection at slightly colder temperatures than what is safe for the wool gloves, and those two combined provide yet another level of protection. A second pair of mittens, when drawn over the wool gloves provide the maximum.
Mom refused to wear the mittens. There is no way she will accept that mittens are wamer than gloves. She doesn't like them.
We also bought her a new hat and a new coat. She loves the hat, but is having issues with the coat. It is long, its rated to -50F and a lovely shade of periwinkle blue. The coat reaches down below her boots, so she is not exposed to direct cold throughout her body.
Her coats were always beige with collars. She put her poodle pin and whatever else she favored on the labels of her other coats. This coat doesn't have a true lapel and she fussed and worried about it all weekend, finally putting it away in the closet because it made her unhappy. She is no longer bracing her thin little body against the cold when she walks outside to get in the car, but she doesn't truly notice that. I notice it, but in her mental state, it doesn't register she is safer and more comfortable.
Marilyn is ill today, so we picked her up. As I watched her come out with Gary I saw this petite, woman coming toward me. Her wool felted hat was secure upon her head. Her coat was fully zipped up and snapped all the way down. She had her wool gloves on. As she walked toward the car, I suddenly realized she really looked like an Alaskan elder should look - totally bundled up, moving carefully through pounds of down!
Monday, January 2, 2012
Anxiety
My mom and aunt both smoked like crazy. My aunt passed that anxiety to her children, two of whom died last fall, one due to lung cancer. My mother developed pneumonia which led to her state, vascular dementia, and emphysema. It's my observation that those smokers who maintain that relationship through thick and thin, despite all the warnings, despite all of the information and seeing those around them succumb to its effects, are those who have an anxious nature. Nicotine reduces the anxiety. It is a balm; so the addiction is much more than a straight forward drug addiction. It is an addiction to feeling okay about things.
When I asked my aunt about why she continued to smoke she told me that she opted to smoke over taking an anti-depressant because she didn't want to become addicted to a mind altering drug. Isn't that amazing? My son is the same way. They choose a drug that does alter their state of mind and greatly damages their health, but do so thinking it will impact their self-awareness less.
But the point I wanted to make is related to how Mom's anxiety affects her as she ages - being far more vulnerable than my aunt who does not have dementia. I mentioned in one of my posts that we had been giving Mom a simple anti-anxiety drug called, Ativan. She only requires 1 tablet, although I just read that it may be taken up to 3 times per day if needed. It is not long-lasting in its effects, but smoothes the edges. I also have been talking about Mom's improvement over the last few days which seem to be the result of improved oxygen flow and sufficient electrolytes.
A by-product of improved cognition is greater awareness and hence anxiety. I did not give her Ativan yesterday. I deliberately do not give her a dosage over the weekend. Gary told me he went down and Mom no longer showed signs of a stomach problem, but she was all worked up about feeling abandoned. He said it took a lot to get it out of her, but that is what he ultimately made out of the conversation.
So, the trip to the assisted living home did have an effect on her, and she experienced that from the perspective of one who has an anxious nature and is self-aware enough to feel vulnerable. She feels she can not chart her own destiny. I went down later, but did not open the conversation to any topic about her state of mind or emotions. I asked what she needed for food and continued on as normal without any change in my demeanor. At this juncture, it will be very important for me to be even in my interactions with her so there is nothing in my manner that catalyzes increased anxiety.
An interesting event occurred later in the day. As she was getting ready for bed, I told her that Marilyn would be in to take care of her in the morning. She asked "Who?" which didn't surprise me. She'd done the same with Pam. But this time, when I said she came into help in the mornings, she brightened up and obviously remembered her.
Every day I feel grateful for the Apria delivery man who decided to take his MBA here - of all the unexpected places.
When I asked my aunt about why she continued to smoke she told me that she opted to smoke over taking an anti-depressant because she didn't want to become addicted to a mind altering drug. Isn't that amazing? My son is the same way. They choose a drug that does alter their state of mind and greatly damages their health, but do so thinking it will impact their self-awareness less.
But the point I wanted to make is related to how Mom's anxiety affects her as she ages - being far more vulnerable than my aunt who does not have dementia. I mentioned in one of my posts that we had been giving Mom a simple anti-anxiety drug called, Ativan. She only requires 1 tablet, although I just read that it may be taken up to 3 times per day if needed. It is not long-lasting in its effects, but smoothes the edges. I also have been talking about Mom's improvement over the last few days which seem to be the result of improved oxygen flow and sufficient electrolytes.
A by-product of improved cognition is greater awareness and hence anxiety. I did not give her Ativan yesterday. I deliberately do not give her a dosage over the weekend. Gary told me he went down and Mom no longer showed signs of a stomach problem, but she was all worked up about feeling abandoned. He said it took a lot to get it out of her, but that is what he ultimately made out of the conversation.
So, the trip to the assisted living home did have an effect on her, and she experienced that from the perspective of one who has an anxious nature and is self-aware enough to feel vulnerable. She feels she can not chart her own destiny. I went down later, but did not open the conversation to any topic about her state of mind or emotions. I asked what she needed for food and continued on as normal without any change in my demeanor. At this juncture, it will be very important for me to be even in my interactions with her so there is nothing in my manner that catalyzes increased anxiety.
An interesting event occurred later in the day. As she was getting ready for bed, I told her that Marilyn would be in to take care of her in the morning. She asked "Who?" which didn't surprise me. She'd done the same with Pam. But this time, when I said she came into help in the mornings, she brightened up and obviously remembered her.
Every day I feel grateful for the Apria delivery man who decided to take his MBA here - of all the unexpected places.
Sunday, January 1, 2012
Frailty and Strength
Mom's condition blends frailty and strength. Overall, she is sound for her age. But when you combine with emphysema, osteoporosis, and dementia, she has vulnerabilities that can not be ignored.
I mentioned that she did well yesterday. She was able to travel outside the home and remain involved and alert. Today, she got up and made it to the toilet on her own, despite things still not being back to normal from the looks of it. She took her shower and shampoo well and put on her sweat pants herself without help from me. She ate all of her breakfast.
But soon after eating, she began grabbing at her stomach. I asked if she needed to go the bathroom again, based on what I'd seen earlier. But that wasn't the issue. I'd given her her weekly dosage of Fosamax this morning and as I thought about it, I wondered if it had been a mistake to give her the osteoporosis medication on a stomach that had not sustained much food over the last week. It seems to me that was probably the case.
But I have no way of knowing unless the aching subsides within a few hours. This has happened before - where the Fosamax has caused her extreme gastric discomfort. In fact, that was how I realized she couldn't administer her own medication any more. After falling and breaking her wrist and shoulder, she took an entire month's dosage at once.
So, I will continue to check on her today. If she is not better by tomorrow, or substantially worse by tonight, I will conclude it was not the Fosamax, but a serious ulcer and she needs to be in ER or 1st Care.
Essentially, she is strong, but there are these three factors that always complicate her life, and my ability to pinpoint what is causing today's mini crisis, all of which makes it harder for her to stabilize.
I mentioned that she did well yesterday. She was able to travel outside the home and remain involved and alert. Today, she got up and made it to the toilet on her own, despite things still not being back to normal from the looks of it. She took her shower and shampoo well and put on her sweat pants herself without help from me. She ate all of her breakfast.
But soon after eating, she began grabbing at her stomach. I asked if she needed to go the bathroom again, based on what I'd seen earlier. But that wasn't the issue. I'd given her her weekly dosage of Fosamax this morning and as I thought about it, I wondered if it had been a mistake to give her the osteoporosis medication on a stomach that had not sustained much food over the last week. It seems to me that was probably the case.
But I have no way of knowing unless the aching subsides within a few hours. This has happened before - where the Fosamax has caused her extreme gastric discomfort. In fact, that was how I realized she couldn't administer her own medication any more. After falling and breaking her wrist and shoulder, she took an entire month's dosage at once.
So, I will continue to check on her today. If she is not better by tomorrow, or substantially worse by tonight, I will conclude it was not the Fosamax, but a serious ulcer and she needs to be in ER or 1st Care.
Essentially, she is strong, but there are these three factors that always complicate her life, and my ability to pinpoint what is causing today's mini crisis, all of which makes it harder for her to stabilize.
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