Dementia: Finding a Place

Dementia: Finding a Place
Her only comment was "I've come to this."
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The situation came to a head the day I found Mom on her living room floor, conscious but disoriented.  I summoned an ambulance to transport her to the hospital.   Several tests and several days later she was diagnosed with low potassium, electrolyte issues and early Alzheimer’s. I was upset with myself because I should have recognized the Alzheimer’s. It explained a number of things that had been out of place over the last few months.  For one thing, Mom always knew to the penny what was in her bank, but was now complaining, “I can’t get the statement to match my balance. The darn bank is doing things differently.”  However, I had long ago stopped asking her to let me help her with things.  My offers were perceived as “nosey intrusion” into her business.  

Once the doctors had her stabilized, she was moved to a rehabilitation facility. Here she had a private room furnished with bed, bedside table and one overstuffed chair. The walls were painted what the military refers to as “sick bay green.”  It was well run and clean, but depressing.  Everyone there was sick and/or injured.   Mom, in her state of stress and confusion  was convince that she was going to live the rest of her days in this one room. “I am ruined. I am going to die,” she repeated told me.  I could also tell, while she didn’t verbalize it, she saw me as a contributor to her dilemma.

We were cautioned that once released from rehab she could not live entirely on her own. She needed to have her food, medicine intake, and physical safety issues monitored.   I ask Mom to move in with me.  Without hesitation she gave me an emphatic, “No!” adding I should “butt out!”  Mom was a capable woman who had survived the rigors of frequent moves during 30 years as a military wife.  She had been on her own and in charge due to her husband’s tours of duty, and since his passing years earlier. She wasn’t  going to give up easily. I knew whatever decision I made, she wasn’t going to like it. 

For the first time in my life, I had to take charge of making the decision for her and somehow get her to cooperate.  I made a list of what the doctor said she required.  I weighed the pros and cons of living with me versus an assisted living facility. I looked at her financial situation. I knew what was available at my house, now I needed to find out what was available in assisted living.

The facility I selected was based mostly on the director asking first, “What are her needs, her likes and dislikes?”, and second, “How can we meet them?”  Once these questions were answered to everyone’s satisfaction, she talked costs.  I was pleased that she had not made money the initial factor. This combined with the immediate availability of a three room suite, helped make my final selection.

Mom was released from rehab facility in a week. My sons and I spent the interim moving her furniture and personal belongings from her current resident to her new one.   We selected furnishings designed for comfort and safety, and those we felt had the most meaning to her.  This included her bed, dresser and bedside tables she had recently purchase for herself, her bedroom TV and another from her livings room.  Knowing her attachment to it, we also brought a carved chest she had picked up in Panama in 1934 as a newlywed when she followed my father to his new tour of duty. Her piano filled the living room. The piano was one of the things we inquired about with each facility. This one had no reservations about the piano, and in fact suggested a room that had only one common wall, so she would have a choice of three walls to place the piano and not disturb the person on the other side. The other facilities were hesitant, but agreed to “try it.”

The day before her release from rehab, we tried to talk to her about her new residence. She wouldn’t discuss it; perhaps she didn’t really understand.  The day she was discharged, we drove her directly to her new home.  She was please to be leaving rehab, and insisted she must be taken “right home.” Suddenly she became very quiet. I think it dawned on her that she was not going home.  It was a strange feeling for her two grandsons and me. We knew we were going against her wishes, something we were not at all accustomed to doing and we could feel her apprehension, anger, disapproval. 

At the facility she exited the car without a word, her lips pursed in her signature look of disgust. Normally outgoing and talkative when meeting new people, she mumbled a hello to the staff some of whom gathered to greet us. She walked slowly down the hall, eyes downcast, unresponsive to anything we said or asked her. I showed her the “Welcome, Virginia,” sign the staff put on her door. She ignored it and entered the room with a “harrumph”. I did see a slight change of expression when she looked around the suite and  realized there was more than one room and  that the furnishings were from her house, but her only comment was “I’ve come down to this.”

Mom sat on her loveseat, arms crossed, eyes downcast. She refused to go to the dining room for lunch. Staff brought a tray. She refused to eat.  Finally she told us to leave adding, “I don’t want to be a burden.”  Staff assured us this was not totally unusual behavior and it would be okay for us to go.  As painful as it was, I left her in their care and went home with a deep feeling of guilt.

After a sleepless night of worrying and wondering if we had done the right thing, I hurried back to see her and determine if she needed me to shop for anything for her. When I entered her room, she was seated on the loveseat; she acknowledged my presence without a smile or warmth.  I asked if she had found where I had put her things, and started a tour – dishes and snacks in the kitchenette, sheet music in the piano stool and her books of music in the bookcase. She paid little attention. Finally, I got her into the bedroom where she sat listlessly on the edge of the bed. I showed her the chest-of-drawers in the walk-in closet filled with her linens, pajamas, underwear, scarves; and her clothes on the rack.

I felt I was getting nowhere, but persisted and then suggested we walk down the hall and look around. Her face told me she didn’t want to and I was “on her list.”  With a little coaxing, she accompanied me down the hall. At first she shuffled slowly at my side, however, the closer we came to voices, the more firm her step became. By the time we reached the great room, her head was up, but she looked neither left nor right.  I suddenly realized that this strong woman who  as a Navy wife had moved dozens of times, lived in metal Quonset huts, penthouses, motel and hotel rooms and been forced to constantly interact with people she was meeting for the first time was unsure of herself and embarrassed that she “had come to this.” 

It was a difficult few days for all of her family.  I definitely felt I had somehow let her down, at the same time I was relieved that we found such a great place.  Later when I discussed the event of the day with a friend, he shook my confidence when he stated, “My family will never do that.  We take care of our own.”  I assume he meant we were delegating our responsibility to someone else, and it took a long time for me to stop worrying that I was abdicating my responsibility.  I also suspect my friend was looking at his mom’s current home as his future inheritance.  I never considered anything my mom had to be mine. I knew my dad’s main concern was her care, and everything he left was with that in mind.  She was not rich, but I succeeded in finding a facility that offered the best of surroundings and the most professional care within her means.

Over the next few weeks the staff and I conferred and worked at the job of bringing her out of her shell. It took a lot of patience.   As much as I tried I elicited nothing but unhappiness from her. I decided I was too close to my mom and what she was feeling.   Our relationship and her independence were such that it wasn’t going to get better the harder I tried.  I explained how I felt to the staff.  They understood and took over where I was failing.

Eventually, she came out of her shell and interacted with everyone. She “advised” the staff on how to run things. She took new residents under her wing and showed them the ropes.  She helped gathering them up for breakfast, lunch and dinner. Patting their hands, she would say, “Don’t be upset. You’ll like it here and if they don’t treat you right, just let me know.”  She showed them where the mailboxes were and introduced them to the mailman.  She took it upon herself to remind staff when it was time for meds, when to lower their voices, and for someone who was not a church going woman, found great joy in yelling, “halleluiah” when the various representatives of the church came to visit and sing hymns. When we took her anywhere (eventually, she didn’t want to leave the facility and only cooperated if it was a doctor appointment) she would say, “I need to get back, they can’t run that place without me.”  Staff would laughingly tell us about her antics and that when someone wanted something done, but was fearful of doing it themselves, they would say, “Get Grandma Virginia, She will do it!”  By this time she was the oldest one there and everyone from age 25 to 95 called her grandma.

Over the last year her attention shifted from the wellbeing of the residents to the wellbeing of the resident dog named Pee Wee. Mom took charge of him declaring he was hers.  I was instructed to bring doggie snacks, and see that his vet bills were paid.  

My sons and I coordinated our visits to be sure there was always someone coming to see her - not every day, but definitely several times a week. I would bring her new clothes, because she loved getting them, although she seldom wore them.  After a while we quit stocking snacks in the kitchenette, having discovered the hoard she accumulated from winning (or just taking) prizes.

Mom never told me she was happy there, but staff said she often commented that she was not a burden to her daughter by being there and she had her independence from that “bossy woman,” meaning of course, me.

I once told her that with careful planning she could live in assisted living for 125 years.  Everyone had the idea that she was attempting to do so, because her enthusiasm and involvement maintained a high pace until the fateful day she had an unavoidable fall.  It was six months shy of her 99th birthday.  How she actually fell became the subject of many of her stories.  Initially, she said the staff tied the dog to her bed (the dog was a small dachshund and never tied to the bed) and another dog walked by her room. Pee Wee ran after the other dog, turning her bed over (the fall occurred in the front area of the facility, not in her room.)   She spent a lot of time, the first 90 days, in a chair by the nurse’s office where she was very carefully watched, and residents took turns sitting with her. Over the next 90 days she went downhill, Five days before Christmas she left us to be with her husband who by now had been waiting for her some 21 years.
In the beginning, I felt I was letting Mom down, by not insisting she live with me. Over the seven years she was in assisted living I realized our relationship was not one that demanded we be under the same roof. My other responsibilities would not allow me to do the maximum that I would feel she needed.  She definitely grew happier and was content in her surroundings and I will never think, “If only I’d done it differently.” 

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