Friday, February 11th, one month since mom’s hospitalization, 27 days since rehab admission. At last the answer to mom’s persistent query, when are they going to let me out of this jail? Mom returned to her assisted living apartment in time for lunch on Friday. However, springing her was contrary to what was recommended at her final care conference. “We’d like her to have a speech therapy eval and a psych eval. We’re worried about her anger issues.” Are you kidding me? She’s angry because she’s here! She’s angry because the last remnant of her independence is slowly–and insidiously, I would argue–being overtaken by a medical perspective that lacks context and realistic expectations. And the speech eval–nobody around the table could tell us why that had been recommended. Additionally, “We want to watch her for a couple days to make sure she has, in fact, learned and retained safer use of her walker.” This threw me for a loop. In previous conversations, other certified staff indicated they had an understanding of dementia, meaning that to expect mom to learn new routines, new methods of parking her walker, was, perhaps, optimum, but not realistic… I listened to concerns, my husband encouraging me to just listen to their views, while my heart raced.
And then, “This is about balancing mom’s safety with her spirit, and the spirit has to win. We request that she be discharged tomorrow, as planned.”
“OK. That is your choice.” Mom signed her name under the freshly inscribed comment, “refuses 3-day discharge”–or something like that–we know it’s about protecting liability. While I am not one to criticize businesses for wanting to make money, in this case, it certainly felt like a few more days was money in the bank for the facility.
Friday afternoon, I stopped by mom’s apartment to set up a new touch lamp, recommended by the OT and PT, to make the task of turning on her bedside lamp safer. Then the painful task of discussing the reason why her maple secretary desk would have to be removed from her apartment. We all prize that special piece of furniture, an epicenter of our life, our comfort, our place of refuge, a landmark that signifies who we are and how we live and move and be in the world. Mom has sat at her well-organized maple desk for as long as I can remember, paying bills, writing weekly letters to her parents and children, adding a personal note to each birthday card, sending off annual Valentines and Halloween greeting cards stuffed with $2 bills for each grandchild. Her desk is well-stocked with greeting cards for birthdays, anniversaries, new babies; and sympathy cards for a loved one’s loss. Like many whose gift and passion is language, written expression is nourishment.
That desire to share joy and sadness wrapped in a neatly addressed envelope continues, even though physical and mental challenges have made her world smaller. So perhaps you can understand my dread to present her with the recommendation that the beloved secretary be removed from her room: to prevent her from sitting at something which is inherently unsafe for someone at risk for falls; to provide more floorspace for her to manuever in her studio apartment. (Background is that a few months ago, the fold down writing surface, under too much strain , gave way from its hinges, rendering the desk virtually unusable. Other factors contribute to the wounding of the desk – too painful and not yet fully understood by me– perhaps something I will approach in later weeks.
So I sat on a footstool facing mom, hoping that she could accept, or at least understand, why the desk had to go. Twenty minutes of patience, of doing my best to let her talk it through, twenty minutes of biting my tongue, knowing full well that the dementia would prevent her understanding the logic behind this tearing of her spirit. I have rarely seen my mother cry. While she did not cry that sunny afternoon, her saddened chin and silence, expressed her pain. “It will break up the set.It’s beautiful wood with beautiful drawer pulls. Why can’t we leave it? It will break up the set.” [It matches her high boy dresser, nightstand, and bed.]
Curiously, at the same time, the voice of the swiss cheese synapses admitted that the writing surface was unusable while at the same time confirmed that the desk must stay, so she can sit at the desk to write letters.
Indeed, the landscape is broken , living with limitations, living in spite of limitations. There’s no Aging for Dummies book for this time in life. All the data on finding a good doctor, finding a good assisted living facility, all the data about medicare and medicaid, all the data about skilled nursing facilities, all the data about long term care insurance…none of that can prepare you and your loved ones for the pain, anxiety, spontaneous humor–some dark, some not-so-dark– and epiphanies–both personal and familial– that come with navigating extended life– made possible in large part by advances in pharmaceuticals and medical technology. No dummies book can prepare you for the arduous, and sometimes clumsy, problem sorting, problem solving, advocating, and insisting that is required.
Mom soon left for the weekly happy hour downstairs in the activity room. She will enjoy her ginger ale and mini quiches and most importantly, familiar smiles. I stayed behind to place more safety strips on her sit-down shower. As she reached to open the door of her apartment, she said, “I don’t remember where happy hour is.” A courageous question. Gone one month, and the Friday afternoon routine had faded. I walked her to the elevator;” It’s right across from the dining room. Do you want me to go with you?” “No, ” she confidently pressed “Level 1″ on the elevator, “I can find it.”
Back inside the apartment, I finished adhering the no-slip strips, and then two PCP’s helped me install a bedside grip to help mom get in and out of bed a little more safely. One of the gals is new. She looked at mom’s laptop, and said, “Wow, a computer. I haven’t seen one in any of the other rooms.”
Yep, that’s why we had to free mom from the bird cage. She’s not ready to sit on her perch–in one place–all day long.
On my way home, I wondered what happens to those who have no one to advocate for them. I know the answer. It’s scary–without an advocate, I’m sure many folks get diverted to rehab–then they’re assigned to a room on the other side of the bird cage—a life sentence.