I didn't realize it had been this long since I posted anything on my blog. I see it's been nearly two years!
When I review in my mind these past two years and I realize just how the time seemed to pass, sometimes too quickly, sometimes days that lingered on forever, I reflect on all that has occurred. When my Mother came to live with me over three years ago after hip surgery in Michigan, I was still trying to work part time from home, which, over those first couple of months, became increasingly difficult to accomplish. The responsibilities of a sole Caregiver began to require more and more of my time as she became less and less able.
My Mother suffered several TIAs (Trans-Ischemic Attacks) over the next three years. In reality, after the last one about five months ago, the Physician's Assistant from Humana/United HealthCare, discussed with me the reality of my Mother's condition which is that she was not having TIAs but rather mini-strokes. She explained that the difference is when someone has a TIA, they generally come out of it with little to no side affects; on the other hand, with mini-strokes, the person most generally has definite side affects. We got into this conversation and her explanation because I had made the comment that each time my Mother experienced one of these TIAs (which is what we had been referring to them), when she came out of it, there was always something different. For instance, after one such episode, she was losing her short-term memory; with every subsequent episode, she would be a little more confused and disoriented. This, in combination with a diagnosis of Dementia, made it increasingly difficult to keep her in the moment. Many times she would slip away into another past time, thinking she was somewhere else or waiting for someone from the past. With additional episodes, other changes became apparent, such as loss of upper-body mobility, the use of her arms and hands. After the last episode last October, 2013, she pretty much lost all of her lower-body mobility; as a result, she is pretty much confined to a wheelchair. She no longer uses her walker at all. However, just the other day she said she does walk with her walker, that the aide or nurse takes her for walks once in a while, and that they go and sit outside. Of course, I immediately verified this with the head nurse or some of the aides, and as I thought, no one takes my Mother for walks with her walker or, much less, outside!
It has become apparent to me, and most of the aides and nurses, that she either dreams certain scenarios and then believes them to be reality, or she just gets random thoughts in her head and believes them to be the reality.
In December, we, meaning the family members and Caregivers, were notified that the nursing facility had lost it's Medicare/Medicaid Certification due to certain infractions from their previous inspection. We were assured that they would be doing everything possible to get that reinstated; in the meantime, they lost numerous residents and rehab patients as well as all of their VA residents. From December, 2013, until just about two weeks ago, we were constantly on edge waiting to hear whether we would have to move our loved one to another facility. We watched, and waited, as there ensued a huge turnover of certain of the Administrative staff in particular; and they began holding weekly family meetings to keep us informed of the process of inspections they would have to endure.
When my Mother was referred to this facility approximately eight months ago after one of the mini-strokes left her pretty much immobile from the waist down, I knew I could no longer give her the best care at home. I have serious back issues myself, and I explained it to her to the best of my ability why she would have to reside at the facility from that time. Unfortunately, along with the pangs of the Dementia, she is often sad or depressed because I'm not there all the time. I have also tried to explain to her that I must find some kind of part-time work to do from home, hopefully, in order to supplement my Social Security income. The first available room at that time was the front half of a smaller room; therefore, she had no window. Her roommate, a very nice woman who used a walker and appeared to be fairly coherent, was pleasant enough; however, she kept the blinds on the window, which was on her side of the room, continuously closed as well as keeping the dividing curtain mostly closed also. As a result, my Mother's side of the room was always totally dark; and many times I would walk in during one of my daytime visits so find her either sitting or lying in bed in total darkness. Because of the frequency of the mini-strokes, Mom was fairly confused anyway; but not knowing whether it was day or night most of the time, she was even more confused. I then requested a room with a window as I saw there were many empty rooms after losing so many residents. About two months ago, we were able to move her into a larger room, with a full window, an East view so the sun came up in the morning on her side of the hall; she no longer had a roommate but she indicated that was OK with her. I immediately noticed her ability to now decipher day from night; and I brought several of her old clocks in, so she was now able to know most of the time what time of day it is.
It seems, however, that from week to week there is a change in either her behavior or attitude or physical needs. Up until a few weeks ago, she was back to feeding herself without much assistance; and she was eating about 95-100% or all the food on her plate. After the last mini-stroke, her condition had declined so much, her weight dropped down to approximately 88 pounds (her normal weight had been about 104 after the hip surgery four years ago), and it appeared she was near death. I requested hospice care for her, and over the next several months they have been so wonderful! The hospice nurse came in weekly to check her vitals and coordinated with the staff nurse for any particular needs or care. A CNA visited with her twice weekly for her shower, she fixed her hair, and generally visited with her. Along with a Social Worker and a Minister, she had plenty of company between my visits.
Unfortunately, last December, when the nursing center made the announcement about losing the M/M Certification, the hospice services had to discontinue because they could not provide services in a facility that was not Certified. So for the past three months, it's just been up to me to visit as much as possible, and I have one daughter who lives here, also, and she and the family visit my Mother, their Gramma and Great Gramma, as often as they can. I also arranged for a Eucharistic Minister from the Catholic Church to visit her every Sunday, to bring her Communion, and chat with her for a while.
Two weeks ago, we were notified that the facility passed all their State inspections; and they would be receiving their new Certification by the First of April. So, thank God, we will not have to move Mom to a new facility. When I had attempted to explain a little of what was going on with the certification, etc., she was confused and thought I would have to move her to another city somewhere, that I wouldn't be able to come and see her very often! Damn, Dementia!
But then, last week, the Social Worker of the Center spoke with both of us about consolidating some of the residents into some of the other hallways. They had lost so many residents, there were totally empty rooms in many of the hallways. This past Friday, we agreed to move Mom to a room to share with another woman; fortunately, we already know Velma, a lovely, kindly, and warm person. Mom had shared a dining room table for meals with her, and two other people, until one of her mini-strokes incapacitated her upper body; and then she was reassigned to what they call the assisted dining room. But we've often chatted with Velma in passing, so Mom is familiar with her, making the move a little more easy. Velma was already situated in the front area of the room, which is one of the larger-sized rooms, so Mom was able to be placed by a window again. So far, things have been fine.
Nancy Kolb, the Eucharistic Minister, visited with Mom yesterday, as she does mostly every Sunday; and she called me later to let me know some of the things Mom had said, one of which that indicated she had played Wii bowling! Now, she used to play that at the previous senior apartment unit where she lived in Plymouth, MI, prior to the hip surgery and moving here. I know the CNAs and the Activities Director have attempted to get Mom involved in some of the games and activities, so I will have to followup and see if that is so (or is she just dreaming that she Wii bowled?!) She used to play BINGO, that was her favorite; but she has cataracts on both eyes and cannot see well enough anymore to play that, cards also, like Pinochle and Eucher. But I have encouraged her, as well as the staff, to try to get her to participate in some of the activities, if at all possible.
After all is said and done, it is very difficult to watch someone you love slip away slowly, not only physically but mentally, also. I miss my Mother already, even tho' she's still here; I can no longer have a reasonable conversation with her. But it is amazing to see how a person's true nature still shines through all the disabilities. She is still a sweet, uncomplaining, jokester of a person! Everyone just loves her to pieces! And I'm glad I'm available and God is giving me the wisdom and ability to handle her care and business. She will not speak up for anything. That's just her natural way. So I am her advocate; and I thank God for leading and guiding me through this difficult time in both our lives.
There are so many resources out in the world for us to aide and assist us in making it through the numerous choices and decisions put before us during this time. I'm so grateful for the many people who have been there for both me and my Mother, giving us tips and pointers, providing us with some free services along the way, and hooking me up with a support group of sorts, people who are experiencing similar situations with a loved one. Some days it just helps to know that you are not the only person going through these situations, and to realize it is really just the "circle of life", as cliche'-ish as that is! One day it will be my turn, and I can only hope and pray there will be one of my children willing and able to help me through my last years.
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