We have all been surprised that mom is now 94, no one more than she is. Two weeks before Christmas, as is our custom, Mr. Regina and I went to see mom in her Tanner Springs assisted living apartment to visit and to set up her decorations as we do each year.
If it had been left up to mom and dad’s kids, we would have liked them in a place of their own much closer to one of us or literally in an apartment built for them in our home or on our property. They were of a generation which had values driving their decision to sell their paid-for house and move to a “progressive living” community: we don’t want to burden our kids; more subtly, we want our independence; and most subtly, we don’t want our kids telling us what to do.
They made the fateful decision to clean out, sell up and moved into their first place, convincing us it was a cute bungalow in lovely mid Willamette Valley near Mt. Angel Abbey. Much further away from us, so a longer drive, we went on our first visit. I saw a high rise in open fields and my dad greeted us from a, tiny 650 sq ft apartment. I had to have Mr. Regina meet him, while I got my sobbing over with and dried my eyes. They were not happy there, and moved twice more before dad died at 88.
Mom moved once again into a very large industrial complex, which she and dad had scoped out before he passed away. It was in a crime filled area, this time in Portland. Mom moved yet again when it was apparent that one of us couldn’t get to her quickly if needed, as she hasn’t driven for a long time. My sibs and I like her current location for several reasons: it’s a smaller facility with about seventy five places; it’s in a neighborhood, not a gigantic complex; it’s one mile and five minutes from my sister’s home; and it’s surrounded by fields and trees. At first the food was much better than the complex too.
A lovely diary from cany got me going: http://www.dailykos.com/...
We have had our concerns along the way.
When she had a rough time a year and a half ago, it was suggested by senior staff, that she be moved into the dementia unit. The director told my brother and me that her greatest liability is fall risk. There is literally no intermediate place for bright but frail older or sick people. This is our nation’s current solution: nursing homes and dementia units. They have more supervision, but the neighbors are truly either advancing in memory loss, poor retrieval, can’t remember how to care for themselves or are medicated into a stupor. The unit in her current facility are two to a room.
Mom’s difficulties have been that she needs help for maybe fifteen minutes quite a few times a day, but not constant attention. Tasks such as changing clothes and moving from the walker to the toilet or shower require a strength and balance that she is losing or has sometimes gone altogether. The alternatives are hugely expensive as well. Oh and terribly depressing. Mom would know, and she fights winter depression as it is.
She is left alone in her rocker/recliner for hours at a time. She can use her walker, but only goes to meals twice a day and to the bathroom. She lacks contact with people, human touch and stimulation. When she had more stamina and less congestive heart failure, she was out and about. This decline has been gradual and in fits and starts over the last year. It has been difficult to chart close up.
Once a person exceeds the facility staff numbers, resources and skills the family must decide what to do. CNA (certified nurses aides) come for four hours minimum and the cost is paid directly, not as part of the Assisted Living provisions. It turns out that the state of Oregon licenses each level at a facility and if they meet the requirements for the level of care they advertise, that is all they need do.
We can pay for more help, but at some point/level we exceed their resources in numbers and skill. We could dump a thousand dollars a week into increased care scripts, and mom would barely get more than she got from us as we provided her help when she was more ambulatory and not so frail.
But things changed dramatically in mid December.
She had taken a fall from nodding out on her walker seat after getting up at night. She took a header and needed a number of stitches on her temple. Complications with Coumadin (a blood thinner) and Congestive Heart Failure, made all this more problematic. My sister who lives closest, took care of this incident which included two hospital stays and follow up.
Her first two nights home, my sister arranged for overnight CNA support. They took copious notes, which we have copies of. Each of two separate CNAs reported mom did not sleep; went to the bathroom frequently, walked her own small hallway; moved from her bed, to her rocker and back often and needed a great deal of assistance in getting settled in each location.
The day med aid and part time head nurse decided that the “strangers” were “disrupting” to mom’s routine and made her ill at ease. So the third night, she was alone. The staff reported she was in her bed and quiet each time they checked on her at reported two hour intervals.
We were not prepared for her apparent drop in function and discomfort when we went to see her four days after returning from the second hospitalization. I ended up staying the night, because she expressed fear of being alone, dieing alone and needing more help.
She had a terrible night. She went to the bathroom on the half hour. Even though she retains fluids, she was dry mouthed and had a considerable volume. I did not know at the time the reasonable decision had been made to stop her blood thinner. At around two, she was the brightest and had the most benefit from drinking water and juices. We had quite a chat about the world, and solved as many problems as we could. At around four am, she started having intense pain in her hip and right leg. She also complained of numbness in her right foot. Since her fall she has said she has pain in her ankles as well. At around that time she was given three Tylenol, and I waited for relief for her, but it did not come. By five or five thirty, I rang for assistance at mom’s request, but was told that there was nothing more that could be done.
Eventually the busyness, pain, peeing and fatigue took their toll. Mom bent forward rocking herself, not her chair, praying “please, please, please” for “our Lord” to take her. She has been very clear and often the most focused in her conversations on being done with her work here for the last three years. She has told us and her doctor directly she would like us to shoot her. She wasn’t joking. We always tell her, she has a job, to pray for the younger ones.
The worst was yet to come though. At around eight am, the med aid came to give mom her first meds of the day. I asked whether we could wait for the nurse to make an assessment and especially to hold the Tylenol as we were told she could not have Oxy(something) in addition to the Tylenol. This was a recent addition to her allowed med list and she had not yet tried these. The problem of adding a narcotic to a fall risk patient was not lost on anyone.
At this point I started getting a lecture and the finger shaking. I was told for spending the night on my mother's floor, that I needed an "intervention". She said my presence and that of the CNAs was stimulating her behaviour and initiating her expressions of discomfort. We have been “disrupting” her routine and making her uneasy. She was fine the one night she was alone. This person did not introduce herself, and I did not know if she knew I was a daughter. Eventually she said I was the absolute cause of my mom’s problems at night. She also said “you know where I am coming from”. I said, this time, “I think I do”. I was sleep deprived and in pain myself, but mostly agape. All this was said to me in front of my mother. I was dressed in my nephew’s T shirt, and my BIL’s shorts. She told me I would have to report to the nurse at 9-9:30am. Five hours and counting since mom had become seriously distressed in pain and fatigue. She refocused on mom and held out a handful of medications, telling mom to “take them”. No instructions just a lot of pills, with disdain for mom’s choking problems. Mom finally asked if she could take one at a time. “If you want to.”
The nurse came unannounced at around 9:15am. She was more professional and did settle some minor questions. We could have given mom the Oxy(something) either time in addition to Tylenol. But the Tylenol had been working so far (or not). The diuretic was not a “sugar pill” as the med aid had told me in support of her position that my presence was stimulating mom to go to the bathroom. But in the end she said, that on three nights mom was uncomfortable, up all the time and restless. On the one night she was alone, she was fine. I should do the math. Politely insisting that mom’s caregivers were causing her problems.
Mom, herself, said that it wasn’t true, and she did not know what she would have done without our help.
This is an assisted living situation and we have seen it in several. As long as the people living there are "independent" living, they come and go and have visitors as if it were their own home. They are off the staff radar. Once they are assisted living and especially if enhanced services such as medication delivery are added, then the staff becomes proprietary towards their inmates. My siblings and I have always been involved in our parents' care as they needed it, but we have found with mom, that the staff resents and blocks our attempts to be involved. They are not used to local family with members who treat her space as an apartment. Unfortunately, the norm is out of state kids who see their mom or dad infrequently. So the staff is reinforced in their "ownership". We were told in the current facility that they staff up and pop in more in the hours in which visits are likely to take place.
I tried the obvious management techniques. Things like not folding my arms, standing next to the nurse, standard non confrontational body language. She backed her staff person against three peoples’ reports. Then she said she really was in a hurry because she had a staff meeting and needed to go.
The so called assisted living facility is obviously beyond its ability to support mom's needs. But they don't like having CNA's or family staying with her at night. This is what's scary. Once there I feel I should stay full time. Things are not as portrayed. Members of my family have not spoken out in fear it would back fire on mom's care. Staying with a parent overnight, puts us in a position to see more of what they do, strengths and weaknesses in the system.
I have reported all this to both my siblings. My sister was adamant that three caregivers could not be wrong and was going to talk to staff. I do not have power of attorney and assist when asked or find myself confronted with something going on. My brother came down and stayed with my sister to work some things out. My sister scheduled a primary care appointment on the day my brother was here, and they worked out a few things. Mom now has a hospital bed so she can rest with her head up, which will help with her choking. This problem often awakes her just as she is dropping off to sleep. She is getting a new rocker/recliner, much easier to get into and out of. Finally, she is getting Oxycodone at night, and remarkably is regaining her day time comfort. She is going out for all her meals again and although it is low level to us, is much more active.
Without intervention from her family, she would be on her way to a dementia unit or a nursing home. There will be another incident. There will be decisions that have to be made. But, not today.
I finally remembered my last comments to the nurse in my frustration and utter disbelief at the lack of connection: “I hate this country; I hate the people and how they treat each other especially the elderly and the sick. I am moving to France where they believe in society.” Then I looked at her and said, “I hate the meanness here.”