It appears that we may be able to place Mom in the home near the University. Marion is not taking another resident right now, though. For personal reasons, she is delaying adding another member to her household. I will check back later. She mentioned that when Mom did not want to get up, we should not force her, but make sure she gets food and liquids - which means full time nursing and not at all the approach I finally took.
So here is the surprise - she got up yesterday with no resistance and made it through the entire day. Although she again mentioned how tired she was, she did manage through the day all right and was fine when we brought her home. After her evening care giver, Marilyn, left, she was still up and about. I did not get her up this morning, but left her to Pam's care. I felt Pam should be able to reassume morning duties. Maria, at FRA (Fairbanks Resource Agency), said UTI really throws elders into a tail spin and they can have a long recovery time. So, sadly, it seems I misinterpreted her symptoms and that perhaps all Mom needed was more time at home resting.
At one point I suspected it could be physically related and called Denali Center to ask about short term care. I found that if she was not able to get up at all, or minimally, that she we could ask our family physician to place her in Denali Center short term care. But now that she is able to be up all day - with strong encouragement from me that first day - she obviously no longer qualifies for that support. However, I do need to keep that in mind for the future.
So, now I am in a bit of confusion. I am not willing to stay at home for her since I have critical deadlines that must be completed before the end of the year when certain features are dropped from a Google product I support. As a result, I put her into a situation where she could not comfortably heal. We allowed her to sleep for many days over the Thanksgiving break, but then I finally forced her to get up which Marion, a LPN, said shouldn't be done. Nevertheless, now that she is up, things are back to our usual routine.
Maria also mentioned that I needed to ask about activities. If she were in a home where all they did was watch TV, her dementia would progress. That is one thing I am not certain about with Let Us Care. It is a small facility, and like Mom, the women there appeared to be very private. All residents were in their rooms when I stopped by @ lunch time. One came out while I was there - perhaps for the stimulation of company, but I don't know because that was just one contact. Perhaps this is not always the case.
So, since Mom is once again able to go to FRA and my thoughts that her unwillingness to get up was based in depression and dementia do not appear to be correct, I am wondering if I should back away from placing her in a home and wait for Gladys Egger to have a spot for her after all. Maria mentioned that she liked the fact that Gladys wanted to plan activities for her residents.
Just when I think it is getting clearer, it gets murky again - and the fact is, right now there is no place for her to move to anyway, so it is a blessing that she is up and going to FRA.
Tuesday, November 29, 2011
Monday, November 28, 2011
Day by Day
Before I get too far into my thoughts regarding Mom, long-term care, and her current status, I want to thank the wonderful deacons at University Community Presbyterian Church for the great meals they put together for us. We have many, many days of meals which we heat up really quickly for Mom. They are nutritious and tasty and it has made one aspect of our life so much easier. I am very grateful for their service.
So, yesterday, I had to lift Mom out of bed. She got up at my request, went to the bathroom and then went right back to bed. I told her she needed to get up and she said, "No!" and started to cover herself up. I needed to forcibly pull her out of bed and move her into the bathroom for cleaning - with her resisting every step of the way. The emotional toll of this activity is high. I am forcing my mother to do something she is resisting. I am rough with her because I have to physically move her and it is not easy. Her resistance angers me, and oddly, when I finally voice my anger at her, she begins to comply. I wondered if this induces her sudden cooperation because she was raised in the era of corporal punishment and her reaction, from her youth, is to behave in the face of anger.
Or it might be that "resistance is futile".
I am as stubborn as she and ultimately stronger. She had not bathed or had sitz baths for over a day. I felt, considering how ill she became from her UTI, that I had no choice but to make her get up and get dressed in clean sweats. Oddly, once up and fed, she stayed up all day. No joke! She watched TV, ate regular meals, used the toilet, drank whatever we gave her and was a model patient. Perhaps the fact I was around a lot, as was Gary, helped, but honestly, I am not sure what caused the shift.
When I was telling my dad about my experience with her and commented on how I was surprised she stayed up, he said, "It's because you made her get up." I think this is what triggered my thoughts on what invokes obedience from her. Since I made her get up, she translated that into she had to be up all day. Well, it was better for her - she was able to stay up, but at one point, she told me she was so tired. I assumed that meant she was physically tired and would go to bed, but maybe it was tired in spirit, or maybe it was tired of how hard everything was. She did not go to bed after that statement, but stayed up and watched the Bronco/San Diego Football game, ate more meals, and drank more decaf coffee.
At some point, I went down after 7 pm and she was asleep.
This morning Gary went with me to get her up. Since Pam had so much trouble last week, I'd told her to not come this morning. My intention was if Mom needed to be hauled of bed, we would do it. I need her to be at FRA (Fairbanks Resource Agency) Adult Day Care and could not risk another call from Pam saying she could not get Mom up and she was hitting and kicking her. Gary got her up and once she was in the bathroom, he left to get dressed for work and I cleaned her and dressed her. I gave her some tea, but had not yet made her breakfast when, to my surprise, Pam arrived. Although I'd asked her to come, I am glad we got our wires crossed because since I had her up and dressed, I could leave Pam to vacuum, make the bed (I'd removed the linen), feed Mom, and take her to FRA. Gary and I were ready to go and wonders of wonders, I made it to work on time.
Dad asked me what would happen when she went to an Assisted Living Home. Would they make her get up like I do? I said they would, but I am not 100% sure of that. But what I have been told by those whose profession and experience is to care for elders at this stage in their lives, is that once in a social environment, the attitudes of the elder change. Where they had no reason to get up, now the social interaction motivates them to re-engage in living.
In any case, we have managed one more day. Taking it a day at a time is what is happening now.
So, yesterday, I had to lift Mom out of bed. She got up at my request, went to the bathroom and then went right back to bed. I told her she needed to get up and she said, "No!" and started to cover herself up. I needed to forcibly pull her out of bed and move her into the bathroom for cleaning - with her resisting every step of the way. The emotional toll of this activity is high. I am forcing my mother to do something she is resisting. I am rough with her because I have to physically move her and it is not easy. Her resistance angers me, and oddly, when I finally voice my anger at her, she begins to comply. I wondered if this induces her sudden cooperation because she was raised in the era of corporal punishment and her reaction, from her youth, is to behave in the face of anger.
Or it might be that "resistance is futile".
I am as stubborn as she and ultimately stronger. She had not bathed or had sitz baths for over a day. I felt, considering how ill she became from her UTI, that I had no choice but to make her get up and get dressed in clean sweats. Oddly, once up and fed, she stayed up all day. No joke! She watched TV, ate regular meals, used the toilet, drank whatever we gave her and was a model patient. Perhaps the fact I was around a lot, as was Gary, helped, but honestly, I am not sure what caused the shift.
When I was telling my dad about my experience with her and commented on how I was surprised she stayed up, he said, "It's because you made her get up." I think this is what triggered my thoughts on what invokes obedience from her. Since I made her get up, she translated that into she had to be up all day. Well, it was better for her - she was able to stay up, but at one point, she told me she was so tired. I assumed that meant she was physically tired and would go to bed, but maybe it was tired in spirit, or maybe it was tired of how hard everything was. She did not go to bed after that statement, but stayed up and watched the Bronco/San Diego Football game, ate more meals, and drank more decaf coffee.
At some point, I went down after 7 pm and she was asleep.
This morning Gary went with me to get her up. Since Pam had so much trouble last week, I'd told her to not come this morning. My intention was if Mom needed to be hauled of bed, we would do it. I need her to be at FRA (Fairbanks Resource Agency) Adult Day Care and could not risk another call from Pam saying she could not get Mom up and she was hitting and kicking her. Gary got her up and once she was in the bathroom, he left to get dressed for work and I cleaned her and dressed her. I gave her some tea, but had not yet made her breakfast when, to my surprise, Pam arrived. Although I'd asked her to come, I am glad we got our wires crossed because since I had her up and dressed, I could leave Pam to vacuum, make the bed (I'd removed the linen), feed Mom, and take her to FRA. Gary and I were ready to go and wonders of wonders, I made it to work on time.
Dad asked me what would happen when she went to an Assisted Living Home. Would they make her get up like I do? I said they would, but I am not 100% sure of that. But what I have been told by those whose profession and experience is to care for elders at this stage in their lives, is that once in a social environment, the attitudes of the elder change. Where they had no reason to get up, now the social interaction motivates them to re-engage in living.
In any case, we have managed one more day. Taking it a day at a time is what is happening now.
Saturday, November 26, 2011
The Unusual Choices for Assisted Living in Fairbanks
I have to choose my words carefully because I don't want to be sued for libel or slander. That is my first thought as I begin to write about my experiences in seeking a good spot for my mom.
When I first started considering this search, I visited Farmer's Loop Home run by Gladys Egger. At that time, she had a duplex, very spacious and south facing, on Senate Loop. The furnishings were spare, but comfortable, the light was excellent, and the kitchen clean and well laid out. The bedrooms were likewise clean, spacious and inviting. I do believe I expected other homes to be near this quality and to incorporate necessary features to care for elders and those needing assistance. But I have since found some surprising conditions in which elders live - especially those with lower incomes or who are fully state supported.
First, let me eliminate from the discussion the two state-run facilities - Pioneer Home and Denali Center. They both are well run and wonderful environments and both have waiting lists. Since Mom is a dementia patient, long term care at Denali Center is a reasonable alternative, but that waiting list is 10 people. Mom is at the top of the 3rd page for the Pioneer Home. She has not made progress in the last few months on that list. In fact, she has lost some ground as some have become active, claiming a spot in application date order, shifting her down a few places.
So, having spoken with both of the intake coordinators at those facilities, I turned to the list of state approved assisted living homes in Fairbanks. I did not include a home in North Pole, Lilley Lodge, that mom stayed at last year when we went south to be with Dad. It is a good home, but far away and we would not visit her as often as I would like. Ironically, I am clear it is a good facility now, having visited other homes. At the time, I was concerned by the small size of the bedrooms and the fact that Mom shared a room. The home itself was not especially large, but the living area was spacious, the dining room table and kitchen well-laid out, and the feeling was cozy and comfortable. The proprietor is an LPN, competent and knowledgeable.
Those that I could find to call were:
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Wednesday before Thanksgiving I visited Let Us Care on Sandvik, right near campus. I was already open to this location because it was close to campus. My daily walk at noon would become a walk to her residence for a 1/2 hour visit. From the street, it did not look like much, but once inside it easily was the nicest of the places I visited over the course of my exploration. As you came in off the garage there was a half flight going up and a half flight down. The kitchen was at the top of the stairs and Marion asked that I remove my shoes. Her floor and everything about the facility was spotless. The common room faced south and opened onto a lovely deck. It was nicely furnished and felt homey and inviting. She has five room and currently four residents. Each resident has their own room. The room was small, but lovely and enough room to bring in a book stand for some of my Mom's most precious things. A window faced north and the room opened onto the common area. There were two bathrooms, both clean, but Mom would have to step over the tub to get into the shower.
Marion asked me what type of person my mother was before offering me the opportunity to come by and take a look. As I looked at her facility, I could understand why. Each of the residents is more private and it is a quiet home - although having good relations with the rest of the residents would be important. Marion made it clear that she had 3 people ahead of me who were private pay and if they wanted the place, she would choose them as they paid more than state care. I mentioned Mom's income at one point and I got the impression she was surprised that we would be able to pay what we can. I think between what the state pays and what we pay, it should be a good income, probably more than what my husband makes a month.
This discussion left me feeling somewhat unsure. Would my mother be resented because she did not have private pay? The positives sides were the facility and the private room. Despite Marion's comments about state funded clients, she is actually a positive side to this as well. She said the only down-side to what she does is finding really good help - people who are honest and reliable. She likes to cook and obviously cares well for her clients. I felt Mom could fit in with the other residents.
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I visited Summer Shades on 6th Avenue (and all others discussed here) yesterday, Friday. It is downtown; the house is old, the bedrooms are small. The building is an older early Fairbanks framed, rambling with add-ons. Despite that, it appeared to be well-maintained. Windows were not thermopane in the bedroom wing and I doubt the house is well insulated, leaving one to gasp at the cost of heating it in order to keep in comfortable for elders. The staff are three LPNs that rotate through 12 hour schedules. They are licensed for 8 beds, all shared rooms. The facility is both men and women.
The kitchen and dining area were pleasant and there were two sitting rooms. One was off the dining room with two chairs and a TV and the other was larger with several comfortable chairs and another TV. Although not large, the common areas did not feel cramped or crowded. The dining room, although not as nice as that of Farmer's Loop Home, Let Us Care, or Lilley Lodge, was pleasant and large enough for all of the residents. The larger sitting room was abundantly furnished with darker walls and managed to appear more home-like than institutional.
The space available is a bedroom roughly 10' X 10' or less. There was enough space for a dresser and to walk between the beds, but not much beyond that. There was no place to put anything personal except some photos on the wall. (Suddenly the bedroom at Lilley Lodge was gigantic in my memory). I did not see space for her oxygen compressor. There was adequate space for clothes storage. The bathroom was practical for showering with no steps or tub.
The most positive aspect of this facility was the staff. I liked the woman I spoke with. She was knowledgeable, articulate, and very aware of her clients. The downside was its location (not convenient for us to stop by and visit), the age of the building and the size of the shared room. I am not sure Mom would fit in there.
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Even though they had just filled two spaces, I stopped by to visit Caring Bridges since it was on 7th Avenue and I was already in the area. The facility has two floors, laid out in the same way. It looked as though it had been built for the purpose it was used. The facility is newer and well maintained in the interior and exterior. Entering there was a choice of going upstairs or down. Those upstairs were more ambulatory and independent and could take care of their personal needs, despite walkers, etc. The rooms upstairs had bay windows. The bottom floor was for those needing more attention. I found a woman I met elsewhere was a resident there (I will call her Geraldine). Where my experience of her was that she was very quiet, I can tell you, her personality was very evident in her home. She does not speak in real sentences much of the time, but when she did, it was sharp and witty and full of fun. It was a very different view of her to be sure.
The layout, once you arrived on the floor was a common area to the right and a common area to the left. A central dining/cooking area on the opposite side of entry hall bridged those two areas. At either side of the common areas were bathrooms and bedrooms. Those who were private pay had modest, but adequate private rooms. Those who were not private pay shared a room. The facility has 16 beds with at least half of them shared rooms. The feeling I got as I went into the facility was pleasant mayhem, but that could have been a lot to do with Geraldine.
There were three round dining tables set up in the dining room and some of the residents were sitting there coffee cup in hand. It was a cheerful room and had an enviable kitchen. Others were in chairs watching TV. This common room, facing the kitchen/dining area felt narrow and closed to me with just three or 4 chairs in a row along the wall. The other common room, not used as much had two chairs and felt more spacious, although it probably wasn't. The hallway leading back to the majority of rooms was narrow; the shared rooms were larger than at Summer Shades, and probably as large as those at Lilley Lodge. The walls were painted a bright yellow downstairs. The facility was well-staffed.
A positive aspect of the facility was the social life. A down side could be the social life. I think Mom, who is very private could exhaust there. There was one woman napping at Summer Shades and the nurse told me she got nervous around so many people would go take a nap midday to get away from everyone. I could see Mom doing that. Another positive aspect was the staff. The woman I spoke with had been there long enough for her child, who is probably about 6, to have started out with her as a baby at the facility. Her daughter can come with her, another positive thing about it. Overall, it looks like a great facility, although cramped in the bedroom and common living areas.
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I visited Rocking Years II on Jefferson next. The woman on the telephone told me she thought my mother would fit in better at Rocking Years on Jack Street, but I went to see this one anyway because at the time I called, it had a private room. The house is huge. You wouldn't guess it from the street, but it 8 beds and as far as I can see, only one bedroom is shared.
As you walk in, you enter a foyer that is used as an office. Passing through that, there is a bathroom on the right hand side which is very well designed for those with special needs. The kitchen is to the right and the common area is straight in front of you edged by the fireplace brick. A stairwell to your left leads up to the second floor. The living area has several windows running all along the south side, yet the room itself is surprising dark. It is furnished with very comfortable looking couches and chairs.
The dining area is reached either through the kitchen or from the living area. It also is framed by several windows. The kitchen is also large, with cabinets painted red. She was making a snack for everyone and she had brightly colored cups out ready for them. I asked her about the darkness of the living room and she assured me it was not dark and that the residents liked it that way. If she turned on the light, they turned it off. She may have been referring to an overhead light. I did not think to check for lamps anywhere.
The private room had been taken in the intervening time, so I was shown the shared room. The room itself looked as though it had actually been a study off the main area. There was no closet and so Mom and the other resident would be hanging their clothes on portable racks. It was the largest shared room I have seen - very spacious as is the whole house. In any case, the private room would not have been appropriate for Mom as it was upstairs and only those residents who could negotiate stairs are housed on the second floor. There appeared to be only one caregiver on staff and the residents were not aged that noticed.
Did I say the place was dark? I headed over to Rocking Years, unsure Mom fit in with the residents.
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I have to say, after visiting Rocking Years II, I was in for a shock when I got to Rocking Years. The building was a small 3 bedroom, 1 3/4 bath ranch home. There was plastic on the windows; the exterior paint aging; the yard had the feeling of neglect. When I went in I was in a small foyer that broke the chill and then entered a common room with 3 chairs. The house could have 5 beds of which 4 were filled. The dining room was set up for only 4 people. Everything about the facility felt old, worn out, past its prime. The house smelled and the carpet and furnishing looked like they needed to be steam cleaned.
One room was private and the other two were shared. Two of the residents shared a room that was paneled with very dark plywood or fake paneling that appeared to be from the time the house was built. Another resident had a private messy room, and the room that was free was narrow. Larger than the one at Summer shades, but still very narrow. The paint also appeared to be from the original house color. The common area was only large enough for the three easy chairs, i.e, very, very small.
I mentioned that the other house was certainly big in comparison, and in passing mentioned the lights: I was told by this care giver that they kept the lights off to keep the electric bill down because it was so expensive. I then mentioned how small it was as I looked over the walls, windows, floor. My hostess said, yes, but everyone got along and then I could see she was taking my reaction to the facility personally somehow - which I did not intend.
My reaction was to get out as soon as possible. My second reaction was that the state was remiss in approving that facility. In my opinion, when compared to the quality of the other facilities - even in the old, old house downtown - it was sub-standard. My next reaction was and still is cold hot anger at the way people without a lot of money or foresight to get insurance are treated in this country ... probably anywhere. I honestly don't know the proprietors, their hearts, their goals or what kind of people they really are. But it is seem that keeping this house modern and up-to-date is not one of their goals.
Am I right in thinking that to be poor is worse than death in all cultures? It seems to me the poor are despised and dumped because they don't appear to deserve more ... and it crossed my mind that I didn't want my mother's income, modest though it is, to help pay for that very big house over on Jefferson.
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To summarize:
My mom lives in a very nice, if modest apartment on the basement floor of our house. For a studio, and for Fairbanks, it is spacious, comfortable, modern and clean. It is from that viewpoint I evaluate the places I visited. I don't have a negative feeling about Summer Shades, but don't think it is the facility for Mom. I will send my daughter by to see what she thinks.
Should something open at Caring Bridges, I would give it serious consideration despite the cramped and chaotic feeling. It is a good facility and my acquaintance is obviously really enjoying herself there.
I considered Rocking Years II until I saw Rocking Years on Jack Street.
I will definitely call Marion at Sandvik on Monday. It is my first choice although I want to ensure that she is truly comfortable in having a partially state supported resident in the home.
My mother was a great mother and worked hard after my parent's divorce. She supported herself and her husband for many years. She deserves - as do all people - a clean, comfortable home to spend her last years.
When I first started considering this search, I visited Farmer's Loop Home run by Gladys Egger. At that time, she had a duplex, very spacious and south facing, on Senate Loop. The furnishings were spare, but comfortable, the light was excellent, and the kitchen clean and well laid out. The bedrooms were likewise clean, spacious and inviting. I do believe I expected other homes to be near this quality and to incorporate necessary features to care for elders and those needing assistance. But I have since found some surprising conditions in which elders live - especially those with lower incomes or who are fully state supported.
First, let me eliminate from the discussion the two state-run facilities - Pioneer Home and Denali Center. They both are well run and wonderful environments and both have waiting lists. Since Mom is a dementia patient, long term care at Denali Center is a reasonable alternative, but that waiting list is 10 people. Mom is at the top of the 3rd page for the Pioneer Home. She has not made progress in the last few months on that list. In fact, she has lost some ground as some have become active, claiming a spot in application date order, shifting her down a few places.
So, having spoken with both of the intake coordinators at those facilities, I turned to the list of state approved assisted living homes in Fairbanks. I did not include a home in North Pole, Lilley Lodge, that mom stayed at last year when we went south to be with Dad. It is a good home, but far away and we would not visit her as often as I would like. Ironically, I am clear it is a good facility now, having visited other homes. At the time, I was concerned by the small size of the bedrooms and the fact that Mom shared a room. The home itself was not especially large, but the living area was spacious, the dining room table and kitchen well-laid out, and the feeling was cozy and comfortable. The proprietor is an LPN, competent and knowledgeable.
Those that I could find to call were:
- Caring Bridges
- Debbie's Assisted Living
- Downtown Care, Inc
- Evergreen Place
- Hope Haven (the new facility run by Glady Egger)
- Let Us Care
- Rocking Years
- Rocking Years II
- Wild Iris Comfort Care
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Wednesday before Thanksgiving I visited Let Us Care on Sandvik, right near campus. I was already open to this location because it was close to campus. My daily walk at noon would become a walk to her residence for a 1/2 hour visit. From the street, it did not look like much, but once inside it easily was the nicest of the places I visited over the course of my exploration. As you came in off the garage there was a half flight going up and a half flight down. The kitchen was at the top of the stairs and Marion asked that I remove my shoes. Her floor and everything about the facility was spotless. The common room faced south and opened onto a lovely deck. It was nicely furnished and felt homey and inviting. She has five room and currently four residents. Each resident has their own room. The room was small, but lovely and enough room to bring in a book stand for some of my Mom's most precious things. A window faced north and the room opened onto the common area. There were two bathrooms, both clean, but Mom would have to step over the tub to get into the shower.
Marion asked me what type of person my mother was before offering me the opportunity to come by and take a look. As I looked at her facility, I could understand why. Each of the residents is more private and it is a quiet home - although having good relations with the rest of the residents would be important. Marion made it clear that she had 3 people ahead of me who were private pay and if they wanted the place, she would choose them as they paid more than state care. I mentioned Mom's income at one point and I got the impression she was surprised that we would be able to pay what we can. I think between what the state pays and what we pay, it should be a good income, probably more than what my husband makes a month.
This discussion left me feeling somewhat unsure. Would my mother be resented because she did not have private pay? The positives sides were the facility and the private room. Despite Marion's comments about state funded clients, she is actually a positive side to this as well. She said the only down-side to what she does is finding really good help - people who are honest and reliable. She likes to cook and obviously cares well for her clients. I felt Mom could fit in with the other residents.
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I visited Summer Shades on 6th Avenue (and all others discussed here) yesterday, Friday. It is downtown; the house is old, the bedrooms are small. The building is an older early Fairbanks framed, rambling with add-ons. Despite that, it appeared to be well-maintained. Windows were not thermopane in the bedroom wing and I doubt the house is well insulated, leaving one to gasp at the cost of heating it in order to keep in comfortable for elders. The staff are three LPNs that rotate through 12 hour schedules. They are licensed for 8 beds, all shared rooms. The facility is both men and women.
The kitchen and dining area were pleasant and there were two sitting rooms. One was off the dining room with two chairs and a TV and the other was larger with several comfortable chairs and another TV. Although not large, the common areas did not feel cramped or crowded. The dining room, although not as nice as that of Farmer's Loop Home, Let Us Care, or Lilley Lodge, was pleasant and large enough for all of the residents. The larger sitting room was abundantly furnished with darker walls and managed to appear more home-like than institutional.
The space available is a bedroom roughly 10' X 10' or less. There was enough space for a dresser and to walk between the beds, but not much beyond that. There was no place to put anything personal except some photos on the wall. (Suddenly the bedroom at Lilley Lodge was gigantic in my memory). I did not see space for her oxygen compressor. There was adequate space for clothes storage. The bathroom was practical for showering with no steps or tub.
The most positive aspect of this facility was the staff. I liked the woman I spoke with. She was knowledgeable, articulate, and very aware of her clients. The downside was its location (not convenient for us to stop by and visit), the age of the building and the size of the shared room. I am not sure Mom would fit in there.
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Even though they had just filled two spaces, I stopped by to visit Caring Bridges since it was on 7th Avenue and I was already in the area. The facility has two floors, laid out in the same way. It looked as though it had been built for the purpose it was used. The facility is newer and well maintained in the interior and exterior. Entering there was a choice of going upstairs or down. Those upstairs were more ambulatory and independent and could take care of their personal needs, despite walkers, etc. The rooms upstairs had bay windows. The bottom floor was for those needing more attention. I found a woman I met elsewhere was a resident there (I will call her Geraldine). Where my experience of her was that she was very quiet, I can tell you, her personality was very evident in her home. She does not speak in real sentences much of the time, but when she did, it was sharp and witty and full of fun. It was a very different view of her to be sure.
The layout, once you arrived on the floor was a common area to the right and a common area to the left. A central dining/cooking area on the opposite side of entry hall bridged those two areas. At either side of the common areas were bathrooms and bedrooms. Those who were private pay had modest, but adequate private rooms. Those who were not private pay shared a room. The facility has 16 beds with at least half of them shared rooms. The feeling I got as I went into the facility was pleasant mayhem, but that could have been a lot to do with Geraldine.
There were three round dining tables set up in the dining room and some of the residents were sitting there coffee cup in hand. It was a cheerful room and had an enviable kitchen. Others were in chairs watching TV. This common room, facing the kitchen/dining area felt narrow and closed to me with just three or 4 chairs in a row along the wall. The other common room, not used as much had two chairs and felt more spacious, although it probably wasn't. The hallway leading back to the majority of rooms was narrow; the shared rooms were larger than at Summer Shades, and probably as large as those at Lilley Lodge. The walls were painted a bright yellow downstairs. The facility was well-staffed.
A positive aspect of the facility was the social life. A down side could be the social life. I think Mom, who is very private could exhaust there. There was one woman napping at Summer Shades and the nurse told me she got nervous around so many people would go take a nap midday to get away from everyone. I could see Mom doing that. Another positive aspect was the staff. The woman I spoke with had been there long enough for her child, who is probably about 6, to have started out with her as a baby at the facility. Her daughter can come with her, another positive thing about it. Overall, it looks like a great facility, although cramped in the bedroom and common living areas.
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I visited Rocking Years II on Jefferson next. The woman on the telephone told me she thought my mother would fit in better at Rocking Years on Jack Street, but I went to see this one anyway because at the time I called, it had a private room. The house is huge. You wouldn't guess it from the street, but it 8 beds and as far as I can see, only one bedroom is shared.
As you walk in, you enter a foyer that is used as an office. Passing through that, there is a bathroom on the right hand side which is very well designed for those with special needs. The kitchen is to the right and the common area is straight in front of you edged by the fireplace brick. A stairwell to your left leads up to the second floor. The living area has several windows running all along the south side, yet the room itself is surprising dark. It is furnished with very comfortable looking couches and chairs.
The dining area is reached either through the kitchen or from the living area. It also is framed by several windows. The kitchen is also large, with cabinets painted red. She was making a snack for everyone and she had brightly colored cups out ready for them. I asked her about the darkness of the living room and she assured me it was not dark and that the residents liked it that way. If she turned on the light, they turned it off. She may have been referring to an overhead light. I did not think to check for lamps anywhere.
The private room had been taken in the intervening time, so I was shown the shared room. The room itself looked as though it had actually been a study off the main area. There was no closet and so Mom and the other resident would be hanging their clothes on portable racks. It was the largest shared room I have seen - very spacious as is the whole house. In any case, the private room would not have been appropriate for Mom as it was upstairs and only those residents who could negotiate stairs are housed on the second floor. There appeared to be only one caregiver on staff and the residents were not aged that noticed.
Did I say the place was dark? I headed over to Rocking Years, unsure Mom fit in with the residents.
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I have to say, after visiting Rocking Years II, I was in for a shock when I got to Rocking Years. The building was a small 3 bedroom, 1 3/4 bath ranch home. There was plastic on the windows; the exterior paint aging; the yard had the feeling of neglect. When I went in I was in a small foyer that broke the chill and then entered a common room with 3 chairs. The house could have 5 beds of which 4 were filled. The dining room was set up for only 4 people. Everything about the facility felt old, worn out, past its prime. The house smelled and the carpet and furnishing looked like they needed to be steam cleaned.
One room was private and the other two were shared. Two of the residents shared a room that was paneled with very dark plywood or fake paneling that appeared to be from the time the house was built. Another resident had a private messy room, and the room that was free was narrow. Larger than the one at Summer shades, but still very narrow. The paint also appeared to be from the original house color. The common area was only large enough for the three easy chairs, i.e, very, very small.
I mentioned that the other house was certainly big in comparison, and in passing mentioned the lights: I was told by this care giver that they kept the lights off to keep the electric bill down because it was so expensive. I then mentioned how small it was as I looked over the walls, windows, floor. My hostess said, yes, but everyone got along and then I could see she was taking my reaction to the facility personally somehow - which I did not intend.
My reaction was to get out as soon as possible. My second reaction was that the state was remiss in approving that facility. In my opinion, when compared to the quality of the other facilities - even in the old, old house downtown - it was sub-standard. My next reaction was and still is cold hot anger at the way people without a lot of money or foresight to get insurance are treated in this country ... probably anywhere. I honestly don't know the proprietors, their hearts, their goals or what kind of people they really are. But it is seem that keeping this house modern and up-to-date is not one of their goals.
Am I right in thinking that to be poor is worse than death in all cultures? It seems to me the poor are despised and dumped because they don't appear to deserve more ... and it crossed my mind that I didn't want my mother's income, modest though it is, to help pay for that very big house over on Jefferson.
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To summarize:
My mom lives in a very nice, if modest apartment on the basement floor of our house. For a studio, and for Fairbanks, it is spacious, comfortable, modern and clean. It is from that viewpoint I evaluate the places I visited. I don't have a negative feeling about Summer Shades, but don't think it is the facility for Mom. I will send my daughter by to see what she thinks.
Should something open at Caring Bridges, I would give it serious consideration despite the cramped and chaotic feeling. It is a good facility and my acquaintance is obviously really enjoying herself there.
I considered Rocking Years II until I saw Rocking Years on Jack Street.
I will definitely call Marion at Sandvik on Monday. It is my first choice although I want to ensure that she is truly comfortable in having a partially state supported resident in the home.
My mother was a great mother and worked hard after my parent's divorce. She supported herself and her husband for many years. She deserves - as do all people - a clean, comfortable home to spend her last years.
Status Report
First - comments on Mom's current state.
When she went to FRA on Tuesday, the day I turned on the lights and Pam was able to get her dressed and on her way, I did not mention a significant event. When they arrived, a man was having a heart attack. They ushered every one to a separate room and although Mom did not speak of it, I do think it impacted her. I have not been able to get Mom up at a reasonable time either since that event. She is showing serious signs of depression and I wondered if it reminded her of Poppy's heart attacks. Poppy, as my daughter named him, was my Mom's husband and the love of her life.
It would have been very much in the recesses of her mind as she does not speak of him anymore, but her heart ached for his loss through her remaining cognitive years. Those memories are still there - even though she can't access them readily. That is the difference between Alzheimer's and something like vascular dementia. The cause is different and the physical characteristics of the brain are different.
I went down late in the day (like near noon) when it was fully light outside and sat and watched TV while I waited; she eventually got up and I noticed her standing, leaning on the table. And, yesterday she got up and I was able to bathe her, shampoo her hair and get her dressed before Teresa, Lorien, and Jamie came by. She had trouble remembering Lorien before they came, but eventually sorted it out. Then she had trouble remembering Jamie after they'd been gone for awhile. They stayed for about an hour and gave her left overs from Thanksgiving while I looked at Assisted Living homes. By the time I got back, about half an hour after they'd gone, she was already in bed (in her clothes).
I found her up and about at 10:00 pm, munching on a stale cracker or cookie she must have hid somewhere. I have no idea where she found it. I made her some soup and opened a can of Hansen's cola. I normally would hate the thought of all that sugar, but she is drinking something and at this point getting her to drink anything is a good thing. But we do need to buy more variety of healthier drinks. We used to give her Gatorade until she told the folks at FRA she was sick of that stuff. We hit upon the cola because she was so enthusiastic about her coke from Carl's Jr's. But she will tire of it soon.
She is supporting herself when she walks everywhere, and very gingerly lowers herself into her chair. I do think she is still in pain. I scheduled a follow on appointment where Dr. Tsigonis can see her first hand and we talk about maintenance control of UTI. But also we can explore what is actually the source of ongoing pain for her.
I am confused and conflicted by all of this. I feel she needs more care, but last night, when she was up on her own rooting around her house and cooing to her kitty, I wondered if moving her was the right decision. Perhaps she is depressed because of the closeness of death and seeing someone struggle in her safe haven at FRA. It is especially easy for me to back peddle after visiting assisted living homes in Fairbanks.
More on that next.
When she went to FRA on Tuesday, the day I turned on the lights and Pam was able to get her dressed and on her way, I did not mention a significant event. When they arrived, a man was having a heart attack. They ushered every one to a separate room and although Mom did not speak of it, I do think it impacted her. I have not been able to get Mom up at a reasonable time either since that event. She is showing serious signs of depression and I wondered if it reminded her of Poppy's heart attacks. Poppy, as my daughter named him, was my Mom's husband and the love of her life.
It would have been very much in the recesses of her mind as she does not speak of him anymore, but her heart ached for his loss through her remaining cognitive years. Those memories are still there - even though she can't access them readily. That is the difference between Alzheimer's and something like vascular dementia. The cause is different and the physical characteristics of the brain are different.
I went down late in the day (like near noon) when it was fully light outside and sat and watched TV while I waited; she eventually got up and I noticed her standing, leaning on the table. And, yesterday she got up and I was able to bathe her, shampoo her hair and get her dressed before Teresa, Lorien, and Jamie came by. She had trouble remembering Lorien before they came, but eventually sorted it out. Then she had trouble remembering Jamie after they'd been gone for awhile. They stayed for about an hour and gave her left overs from Thanksgiving while I looked at Assisted Living homes. By the time I got back, about half an hour after they'd gone, she was already in bed (in her clothes).
I found her up and about at 10:00 pm, munching on a stale cracker or cookie she must have hid somewhere. I have no idea where she found it. I made her some soup and opened a can of Hansen's cola. I normally would hate the thought of all that sugar, but she is drinking something and at this point getting her to drink anything is a good thing. But we do need to buy more variety of healthier drinks. We used to give her Gatorade until she told the folks at FRA she was sick of that stuff. We hit upon the cola because she was so enthusiastic about her coke from Carl's Jr's. But she will tire of it soon.
She is supporting herself when she walks everywhere, and very gingerly lowers herself into her chair. I do think she is still in pain. I scheduled a follow on appointment where Dr. Tsigonis can see her first hand and we talk about maintenance control of UTI. But also we can explore what is actually the source of ongoing pain for her.
I am confused and conflicted by all of this. I feel she needs more care, but last night, when she was up on her own rooting around her house and cooing to her kitty, I wondered if moving her was the right decision. Perhaps she is depressed because of the closeness of death and seeing someone struggle in her safe haven at FRA. It is especially easy for me to back peddle after visiting assisted living homes in Fairbanks.
More on that next.
Wednesday, November 23, 2011
Experiment Results
Well, apparently it worked. Yesterday Pam was able to get Mom up and out the door. I was rushed this morning because my husband had an appointment and forgot to turn on lights and the TV early. Again she would not get up for Pam and argued with me and said she would not get up.
Pam is staying there for a while with lights and TV blazing so her sleep is disrupted, but it looks as though Mom will be on her own for a while today. I can not leave work until noon, so I will drive home then, but this is a serious turn of events. It looks as though I need to place her in a facility immediately.
Pam is staying there for a while with lights and TV blazing so her sleep is disrupted, but it looks as though Mom will be on her own for a while today. I can not leave work until noon, so I will drive home then, but this is a serious turn of events. It looks as though I need to place her in a facility immediately.
Tuesday, November 22, 2011
Experimentation is the One Way to Deal
I am trying something this morning. I spoke with the social service worker at Pioneer's Home about chances of getting Mom in there and as we talked, she mentioned it could be the dark that is throwing Mom off. Well, it is now 8:44 a.m. and still dark outside, so there is something to that. Neither Gary nor I have been crazy about the adjustment to the mid winter dark, but Mom went into an advanced state of dementia within a year after moving here. Having lived at mid-latitudes for nearly 80 years, she is totally confused by the light/dark ratios in Fairbanks.
So am I, but that is an entirely different story.
So, I went down today and turned on two lamps and the TV. The idea was to signal morning in the way I do on weekends and holidays, but also to give her advance warning of the time. Her sleep is already disturbed, things are happening ... it's just an idea and since others before me have experimented with ways to help their elders along, I figure it is worth a shot.
I also asked her to be kind to Pam and let her get her dressed and in the process, unwound her oxygen tubing which had become tangled in her legs. I notice she is sleeping more stretched out, so the pain must be subsiding from the UTI.
I will let you know how it goes ...
So am I, but that is an entirely different story.
So, I went down today and turned on two lamps and the TV. The idea was to signal morning in the way I do on weekends and holidays, but also to give her advance warning of the time. Her sleep is already disturbed, things are happening ... it's just an idea and since others before me have experimented with ways to help their elders along, I figure it is worth a shot.
I also asked her to be kind to Pam and let her get her dressed and in the process, unwound her oxygen tubing which had become tangled in her legs. I notice she is sleeping more stretched out, so the pain must be subsiding from the UTI.
I will let you know how it goes ...
Monday, November 21, 2011
I Never Have Been a Roller Coaster Aficionado
I remember one scene from the movie, Parenthood, with Steve Martin and Mary Steenburgen. Martin's character is watching his children in a school play and nearly sick to his stomach with anxiety while his wife, Mary is watching the play in complete enjoyment, swaying easily with the ups and downs of the ride. I liken their respective responses to some carnival rides. If you tensed up, the experience is not pleasureful, but if you could enjoy the ride, ... well, you get the idea.
Today it crossed by mind that the only way one could possibly enjoy living with one suffering from dementia is to be at peace with the uncertainty and unpredictability of the situation and enjoy how life is continuing to unfold. I am not sure I can actually enjoy it, but if I see it as a roller coaster, with some smooth track, some scary sections, and some apex moments where you are sailing on top of the world - all happening in quick succession - it certainly feels better to me. Today's ride took an unexpected twist.
The last two mornings that Mom's morning care giver, Pam, has been with Mom, Friday and today, she has called me asking for help in getting Mom ready for FRA. Pam said Mom's reaction is a natural progression of the disease, but I am not 100% on board with that yet. For one thing, Pam has had some rough patches of her own lately; when I go through hard times, I find it hard to concentrate on the task at hand, so I haven't completely ruled out Mom is aware that she is more remote and trying to get her attention. Pam has engaged fully with Mom in the past, has been very competent and very helpful to me.
On Mom's side of the equation, there was a time when she was more cooperative with Pam than with me. When Alzheimer's progresses to a certain point, the person who is losing ground to the disease will turn on the family members - those closest to them. I don't know if the progression is the same for those patients suffering from dementia caused by other factors, but Mom is cooperating with me and now with her afternoon care giver. We have theorized that Pam has replaced me. She thinks of Pam as her family and me as an outsider, but I can't say that is what it feels like to me. I still call her Mom; she calls me "Hon". She still looks at me with recognition and understanding of who I am. I am still her authority figure.
So, the roller coaster dives down and takes a twist. I have relied on Pam to be able to keep us together for some time now. She has been with Mom nearly a year. I don't want to lose her because of how important she has become to me, but she can't possibly be getting much emotional satisfaction in fighting with Mom in the mornings. What do I do now? The phone calls settle her down; she cooperates (swearing all the way, but cooperating). She lets her get her dressed; she puts on her coat; she goes to Fairbanks Resource Center, FRA.
When we asked her care givers at FRA how she was today at the Adult Day Care Center, they said she was fine - as she always is. When we got out of the car, her afternoon care giver, Marilyn, was waiting for us. Mom said, "There she is," with real pleasure in her voice. She bossed Marilyn around a little, but essentially let her get her into her PJs, clean her, and help her around the apartment ... Amazing.
The roller coaster car sails back up to the top and evens out a bit before ... what next?
Today it crossed by mind that the only way one could possibly enjoy living with one suffering from dementia is to be at peace with the uncertainty and unpredictability of the situation and enjoy how life is continuing to unfold. I am not sure I can actually enjoy it, but if I see it as a roller coaster, with some smooth track, some scary sections, and some apex moments where you are sailing on top of the world - all happening in quick succession - it certainly feels better to me. Today's ride took an unexpected twist.
The last two mornings that Mom's morning care giver, Pam, has been with Mom, Friday and today, she has called me asking for help in getting Mom ready for FRA. Pam said Mom's reaction is a natural progression of the disease, but I am not 100% on board with that yet. For one thing, Pam has had some rough patches of her own lately; when I go through hard times, I find it hard to concentrate on the task at hand, so I haven't completely ruled out Mom is aware that she is more remote and trying to get her attention. Pam has engaged fully with Mom in the past, has been very competent and very helpful to me.
On Mom's side of the equation, there was a time when she was more cooperative with Pam than with me. When Alzheimer's progresses to a certain point, the person who is losing ground to the disease will turn on the family members - those closest to them. I don't know if the progression is the same for those patients suffering from dementia caused by other factors, but Mom is cooperating with me and now with her afternoon care giver. We have theorized that Pam has replaced me. She thinks of Pam as her family and me as an outsider, but I can't say that is what it feels like to me. I still call her Mom; she calls me "Hon". She still looks at me with recognition and understanding of who I am. I am still her authority figure.
So, the roller coaster dives down and takes a twist. I have relied on Pam to be able to keep us together for some time now. She has been with Mom nearly a year. I don't want to lose her because of how important she has become to me, but she can't possibly be getting much emotional satisfaction in fighting with Mom in the mornings. What do I do now? The phone calls settle her down; she cooperates (swearing all the way, but cooperating). She lets her get her dressed; she puts on her coat; she goes to Fairbanks Resource Center, FRA.
When we asked her care givers at FRA how she was today at the Adult Day Care Center, they said she was fine - as she always is. When we got out of the car, her afternoon care giver, Marilyn, was waiting for us. Mom said, "There she is," with real pleasure in her voice. She bossed Marilyn around a little, but essentially let her get her into her PJs, clean her, and help her around the apartment ... Amazing.
The roller coaster car sails back up to the top and evens out a bit before ... what next?
Friday, November 18, 2011
What is Inevitable in All of This?
Last time I spoke about my mother's fragility and dependency on me - my ability to diagnose what is happening to her in lieu of her being able to tell us. Today, I find I am focused on her current state of mind and body.
Each time she gets ill, for any reason, she loses considerable ground. She may rally in some regards; for example, her mental state is more responsive and aware of me than it has been. But her physical condition is markedly different. Once well, she will have a bit more stamina until the next bout with illness, but her overall ability to care for herself is diminished.
She has been losing ground steadily in terms of being able to get up, get out of bed, lift her legs to dress herself, and so on. She has trouble dropping her arms out of her sleeves and can't pull her tops off over her head. If she feels well enough, she will cooperate with the dressing and undressing process, but now it is like dressing a one to two year old. You tell them what part of his or her body to move to assist, but it is up to you to orchestrate that whole process. Her PCA said she did not help in any way this morning and Pam needed to do every bit of the dressing. Pam is a capable woman and managed, but I am thinking of a day when none of us can get her to move from bed.
Will it come to that? What is inevitable?
I have asked our children to come to her apartment for a replay of Thanksgiving. She can not climb stairs and there is no easy or, for that matter, practical way to get her up to my daughter's living area. The outside steps could be icy and the inside stairs have no railings and it is narrow and steep. So, we will have left overs here in her apartment. She can at least enjoy having her child, son-in-law and grandchildren here. We can pull out her little table to seat four of us and then set up the card table for two others. They both agreed, which is a blessing, because while I suppose nothing is inevitable, I feel this is likely to be her last Thanksgiving at home.
I know it must be hard for children whose parents live in retirement facilities, assisted living homes, or nursing homes, but I am not sure it is as hard as it is for those of us who keep our parents close and at home. We see them each day; our relationship with them is very strong and the emotion of losing them bit by bit can be overwhelming - and painful.
I do not understand life and death, growing and aging. It is a vast mystery why this planet works as it does.
Each time she gets ill, for any reason, she loses considerable ground. She may rally in some regards; for example, her mental state is more responsive and aware of me than it has been. But her physical condition is markedly different. Once well, she will have a bit more stamina until the next bout with illness, but her overall ability to care for herself is diminished.
She has been losing ground steadily in terms of being able to get up, get out of bed, lift her legs to dress herself, and so on. She has trouble dropping her arms out of her sleeves and can't pull her tops off over her head. If she feels well enough, she will cooperate with the dressing and undressing process, but now it is like dressing a one to two year old. You tell them what part of his or her body to move to assist, but it is up to you to orchestrate that whole process. Her PCA said she did not help in any way this morning and Pam needed to do every bit of the dressing. Pam is a capable woman and managed, but I am thinking of a day when none of us can get her to move from bed.
Will it come to that? What is inevitable?
I have asked our children to come to her apartment for a replay of Thanksgiving. She can not climb stairs and there is no easy or, for that matter, practical way to get her up to my daughter's living area. The outside steps could be icy and the inside stairs have no railings and it is narrow and steep. So, we will have left overs here in her apartment. She can at least enjoy having her child, son-in-law and grandchildren here. We can pull out her little table to seat four of us and then set up the card table for two others. They both agreed, which is a blessing, because while I suppose nothing is inevitable, I feel this is likely to be her last Thanksgiving at home.
I know it must be hard for children whose parents live in retirement facilities, assisted living homes, or nursing homes, but I am not sure it is as hard as it is for those of us who keep our parents close and at home. We see them each day; our relationship with them is very strong and the emotion of losing them bit by bit can be overwhelming - and painful.
I do not understand life and death, growing and aging. It is a vast mystery why this planet works as it does.
Monday, November 14, 2011
Am I repeating myself?
At the risk of repeating myself, I am looking at what has happened today much as my mother does - as if yesterday didn't happen. Normally I would be methodical, careful, thorough, and go back to see what had been discussed before. I'd want to know how she was that day and also how I was that day.
Today, I just want to talk about watching her slip from me. And actually, today wasn't like other days.
I hurt by back a little over a week ago. I was doing no more than shaking out a dog bed that I'd washed; I wanted to even out the padding that had bunched up from the dryer. I did no more than raise the pillow up and shake it, but as I shook it I swayed by back just so and once gain hit the point of weakness that started when my son was very young .. and worsened by falling flat on it while hiking across an icy patch with the same son several years ago. I didn't just sort of tweak it out this time, though. It was so painful that not knowing how serious it had become over night, I stood up out of bed and nearly passed out from the pain. I was nauseous and broke out in a cold sweat. I did not attempt to do any walking or standing again without support to pull myself up so absolutely no weight was placed on my spine of any sort.
The result - I was not able to care for my mother. Gary did that in the evening. Access Alaska and FRA(Fairbanks Resource Agency & Adult Day Care Center) came through with coordinating her respite care, so I was able to start a new person for evening care. We now have morning and evening care, but most of the information I was getting was from Pam, her morning PCA, and Gary. But I was not sure I was hearing of anything different.
"She is confused this morning" ... yes, much like she is every morning
"I find her curled up in the morning" .. yes, I have seen her change positions recently. She sleeps more with her head on the pillow near the wall so she doesn't have to schootch down into the covers. Is this different from that.
"She has a cough." ... yes, she does have a little one, but her nose is not running at all and there is no congestion or phlegm.
"She complains of her legs and back hurting" ... yep, we took her in for xrays due to her hip, but nothing was amiss. I wonder if something is worsening.
"She is not eating much for breakfast." ... hmm, I've noticed she is not eating much at night, but they say she is eating well at FRA.
Those were the reports during the week. Then on Friday, when Gary brought her home, he told me that the care givers at FRA said she was very weak and they had to help her get up. He told me that he could barely get her into bed. They mentioned a cough.
So he attempted to feed her. She didn't eat and finally was able to get to bed. She slept most of the next day. I told him that if she worsened, I would call the doctor on Monday. I don't know why I didn't want to take her 1st Care, our emergency care facility, over the weekend. I think it was because I didn't know what to tell them. I didn't really have much to go on except she was not well, but no real symptoms.
This morning, I again stayed home with my back. It is better - still painful, but I can move on my own and get out of bed without the support of the walker. Gary stayed home too. He worked two 8 hour days over the weekend and was beat. I got a call around 11:00 am. Maria was very worried about Mom. She appeared to be in pain, very tired and was complaining of lower back pain. She thought she may have at bladder or kidney infection.
That was what I needed to hear. I had something in my head that thought she could have a UTI recently. I don't know why. There has been no blood in her urine, nothing I could pinpoint, but something ... something. I told her that Gary was home and I was calling her doctor to get her into TVKC today. Then I called the clinic. I told them what I needed and, of course, heard nothing back. I told Gary to go get her and take her to 1st Care. Then I called in to see what had happened to my question and it had been referred to the on-call nurse. They wanted me to talk with her; I did and she agreed that taking her to 1st Care was the best choice now and she chastised me because I hadn't taken her temperature.
I thought, does it matter if she has a temperature or not? She is in great pain, weak, isn't eating, and sleeps all day. What in the world could that information provide ... and besides, her temperature is always below normal. I would have to tell them it was 98F, but that really meant a fever of 2 degrees. Thermometers are overrated in my opinion.
So, Gary gets her in and I waited for his call. I waited for his call. I waited. I waited some more. Finally I called him. They had blood tests and x-rays, but couldn't get a urine sample. He passed the phone to the doctor. Dr. Day mentioned she was dehydrated and this could be the a strong factor in her symptoms. I said she had Gatorade at FRA and they made sure she drank at least 20 ounces each day. "Ah," he said. "We can't get a urine sample. She is resistant to giving us one. Maybe she doesn't need to pee now. We could do a catheter, or you could do it at home." It sounded like he favored this approach, but I told him I could not be relied on to do it well since my back was still sore and I could not bend quickly. And, in the back of my mind, I was becoming reluctant to delay her treatment.
I asked to speak with her. I told her that we were trying to help her. I asked if she could pee. She said, essentially, that she wasn't going to go pee just because they wanted her to. Her natural stubborn nature was in full effect. I reminded her of how much she sick she has been feeling and how much pain she was in. I told her that they needed to see if she had an infection and needed medicine. Giving urine was easier than other ways. I did not get much response and gave them the go ahead to use a catheter. I cringed at the thought of the pain it would cause her. I was distressed, but I reasoned that if it were not a UTI, then we needed to eliminate it rather than treat it as if it were. We needed to find out why she was in so much pain.
Gary called me shortly thereafter to tell me she had complied with their request and she had a UTI. He heard them in the bathroom thanking her for peeing into the toilet pan. I think we were all enormously relieved that she cooperated with us rather than having to subject her to more pain. Previously, I'd already okayed them giving her fluids intravenously for her dehydration. I felt that as sick as she was, the chances of me getting her to drink at home were slim. They gave her an IV drip for over an hour.
I called her afternoon care giver to tell her she didn't need to come because we didn't know how long it would take to get medications, etc. Mom came home with a hamburger, fries and a coke she'd requested while at the clinic. This is not what she usually prefers, but Gary decided to run with it. She drank that coke like there was no tomorrow. In between long draws through the straw, she munched on french fries. I even got a few bites of hamburger into her before she'd had enough.
I gave her the first pill of seven - one each day because elder's livers process through the medication more slowly and it would be in her body for 24 hours. Although I'd told the doctor I could not bend, I managed to bend enough to get her into her PJs and into bed. It hurt for her to bend. It hurt for me to touch her legs. It hurt to straighten her out so she was not bent over once in bed. It hurt for me to bring the blankets up over her. But eventually I got her situated so she was comfortable. She watched me for a bit. She wasn't really sleepy enough to drop off immediately, but she was tired - very tired.
I am fortunate to have morning and evening help and I am fortunate to have a husband who will go the extra to help care for her. But I am the one who monitors her the most closely, me and those who see her every day at FRA. Not being able to care for her at the same time she was getting seriously ill made re-emphasized her dependency on me and her vulnerability. It is not the first time I have considered the possibility that she would get better care in a facility than here in her apartment. But it is the first time that I could see how clearly her lifeline is depending on my ability to watch over her - and me more than anyone else. When I wasn't able to focus on her, she wasn't cared for as quickly as she needed.
Would it be better in a home where a few people have several to watch? Maybe. If they are as caring, compassionate and knowledgeable as Maria (along with Wilma, Miriam, and Sharon) at FRA it could be.
Today, I just want to talk about watching her slip from me. And actually, today wasn't like other days.
I hurt by back a little over a week ago. I was doing no more than shaking out a dog bed that I'd washed; I wanted to even out the padding that had bunched up from the dryer. I did no more than raise the pillow up and shake it, but as I shook it I swayed by back just so and once gain hit the point of weakness that started when my son was very young .. and worsened by falling flat on it while hiking across an icy patch with the same son several years ago. I didn't just sort of tweak it out this time, though. It was so painful that not knowing how serious it had become over night, I stood up out of bed and nearly passed out from the pain. I was nauseous and broke out in a cold sweat. I did not attempt to do any walking or standing again without support to pull myself up so absolutely no weight was placed on my spine of any sort.
The result - I was not able to care for my mother. Gary did that in the evening. Access Alaska and FRA(Fairbanks Resource Agency & Adult Day Care Center) came through with coordinating her respite care, so I was able to start a new person for evening care. We now have morning and evening care, but most of the information I was getting was from Pam, her morning PCA, and Gary. But I was not sure I was hearing of anything different.
"She is confused this morning" ... yes, much like she is every morning
"I find her curled up in the morning" .. yes, I have seen her change positions recently. She sleeps more with her head on the pillow near the wall so she doesn't have to schootch down into the covers. Is this different from that.
"She has a cough." ... yes, she does have a little one, but her nose is not running at all and there is no congestion or phlegm.
"She complains of her legs and back hurting" ... yep, we took her in for xrays due to her hip, but nothing was amiss. I wonder if something is worsening.
"She is not eating much for breakfast." ... hmm, I've noticed she is not eating much at night, but they say she is eating well at FRA.
Those were the reports during the week. Then on Friday, when Gary brought her home, he told me that the care givers at FRA said she was very weak and they had to help her get up. He told me that he could barely get her into bed. They mentioned a cough.
So he attempted to feed her. She didn't eat and finally was able to get to bed. She slept most of the next day. I told him that if she worsened, I would call the doctor on Monday. I don't know why I didn't want to take her 1st Care, our emergency care facility, over the weekend. I think it was because I didn't know what to tell them. I didn't really have much to go on except she was not well, but no real symptoms.
This morning, I again stayed home with my back. It is better - still painful, but I can move on my own and get out of bed without the support of the walker. Gary stayed home too. He worked two 8 hour days over the weekend and was beat. I got a call around 11:00 am. Maria was very worried about Mom. She appeared to be in pain, very tired and was complaining of lower back pain. She thought she may have at bladder or kidney infection.
That was what I needed to hear. I had something in my head that thought she could have a UTI recently. I don't know why. There has been no blood in her urine, nothing I could pinpoint, but something ... something. I told her that Gary was home and I was calling her doctor to get her into TVKC today. Then I called the clinic. I told them what I needed and, of course, heard nothing back. I told Gary to go get her and take her to 1st Care. Then I called in to see what had happened to my question and it had been referred to the on-call nurse. They wanted me to talk with her; I did and she agreed that taking her to 1st Care was the best choice now and she chastised me because I hadn't taken her temperature.
I thought, does it matter if she has a temperature or not? She is in great pain, weak, isn't eating, and sleeps all day. What in the world could that information provide ... and besides, her temperature is always below normal. I would have to tell them it was 98F, but that really meant a fever of 2 degrees. Thermometers are overrated in my opinion.
So, Gary gets her in and I waited for his call. I waited for his call. I waited. I waited some more. Finally I called him. They had blood tests and x-rays, but couldn't get a urine sample. He passed the phone to the doctor. Dr. Day mentioned she was dehydrated and this could be the a strong factor in her symptoms. I said she had Gatorade at FRA and they made sure she drank at least 20 ounces each day. "Ah," he said. "We can't get a urine sample. She is resistant to giving us one. Maybe she doesn't need to pee now. We could do a catheter, or you could do it at home." It sounded like he favored this approach, but I told him I could not be relied on to do it well since my back was still sore and I could not bend quickly. And, in the back of my mind, I was becoming reluctant to delay her treatment.
I asked to speak with her. I told her that we were trying to help her. I asked if she could pee. She said, essentially, that she wasn't going to go pee just because they wanted her to. Her natural stubborn nature was in full effect. I reminded her of how much she sick she has been feeling and how much pain she was in. I told her that they needed to see if she had an infection and needed medicine. Giving urine was easier than other ways. I did not get much response and gave them the go ahead to use a catheter. I cringed at the thought of the pain it would cause her. I was distressed, but I reasoned that if it were not a UTI, then we needed to eliminate it rather than treat it as if it were. We needed to find out why she was in so much pain.
Gary called me shortly thereafter to tell me she had complied with their request and she had a UTI. He heard them in the bathroom thanking her for peeing into the toilet pan. I think we were all enormously relieved that she cooperated with us rather than having to subject her to more pain. Previously, I'd already okayed them giving her fluids intravenously for her dehydration. I felt that as sick as she was, the chances of me getting her to drink at home were slim. They gave her an IV drip for over an hour.
I called her afternoon care giver to tell her she didn't need to come because we didn't know how long it would take to get medications, etc. Mom came home with a hamburger, fries and a coke she'd requested while at the clinic. This is not what she usually prefers, but Gary decided to run with it. She drank that coke like there was no tomorrow. In between long draws through the straw, she munched on french fries. I even got a few bites of hamburger into her before she'd had enough.
I gave her the first pill of seven - one each day because elder's livers process through the medication more slowly and it would be in her body for 24 hours. Although I'd told the doctor I could not bend, I managed to bend enough to get her into her PJs and into bed. It hurt for her to bend. It hurt for me to touch her legs. It hurt to straighten her out so she was not bent over once in bed. It hurt for me to bring the blankets up over her. But eventually I got her situated so she was comfortable. She watched me for a bit. She wasn't really sleepy enough to drop off immediately, but she was tired - very tired.
I am fortunate to have morning and evening help and I am fortunate to have a husband who will go the extra to help care for her. But I am the one who monitors her the most closely, me and those who see her every day at FRA. Not being able to care for her at the same time she was getting seriously ill made re-emphasized her dependency on me and her vulnerability. It is not the first time I have considered the possibility that she would get better care in a facility than here in her apartment. But it is the first time that I could see how clearly her lifeline is depending on my ability to watch over her - and me more than anyone else. When I wasn't able to focus on her, she wasn't cared for as quickly as she needed.
Would it be better in a home where a few people have several to watch? Maybe. If they are as caring, compassionate and knowledgeable as Maria (along with Wilma, Miriam, and Sharon) at FRA it could be.
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