The kindness. The kindness. So many people have asked me to provide an update on my mother after reading It Never Rained on my Parade.
She seems to have adjusted well during the first week. In fact, she seems uncharacteristically docile; the staff at the facility calls her “sweet.” Likely it is the progression of the disease; she just doesn’t have as much energy to be combative as she did a year ago. But, there is a part of me that wants to believe that, even now, some part of her understands how hard the move was for my brother and me. And, she wants to ease the burden.
I came back to California with a heavy heart on Friday. I missed my daughter. I missed my bed. But, I felt terrible leaving my mother, my brother and his family.
Before I left, my brother’s wife had the brilliant idea of making an “Easter tree” to brighten up my mother’s room. I pillaged the $1 bins at Target and came up with lights and other decorations. My mother loved it and we promised to update the decorations for other holidays.
I suppose the Easter tree, and indeed the holiday itself this past weekend, should have symbolized hope. Hope that we had made a good choice for her and the family. Hope that the relatively smooth transition will mean a more manageable life for everyone. However, even though generally I have an upbeat attitude, I find myself somewhat skeptical, and on bad days downright pessimistic, when I look forward.
Recall that my mother is only 64. And otherwise healthy. With limited financial resources. According to the Association for Frontotemporal Degeneration, the length of progression of the disease can range from two to over twenty years, with a mean course of eight years from the onset of symptoms. We can’t be sure, but the best guess is that my mother’s symptoms started about six years ago. That means that we may have a long road in front of us.
Memory care units are outrageously expensive; my mother’s care averages out to $203 per day ($6090 per month). If no other unanticipated expenses arise and we use every dime she has, there is enough money to pay for around nine months of care at the current facility.
Then what? I could try to scrape together the monthly difference between the cost of her care and her meager Social Security/retirement benefits. But, even though I am fortunate to have a somewhat comfortable life, paying the difference for the long-term isn’t sustainable for me. I am a single parent. I have to save money for my daughter to go to college in a few years. I have to save money that may be needed to pay for my own nursing care someday.
If we aren’t self-pay, our option is Medicaid. Even as a lawyer, I have found it difficult to understand how “functional eligibility” and “activities of daily living” fit together and what it all really means at the end of the day. As it relates to our family, I’m pretty sure it boils down to the fact that Medicaid beds in memory care units are difficult to find. So, I think that means when my mother’s money is gone, the likely option is a more traditional long-term nursing care facility. Where there is a higher resident to staff ratio. Where the staff is likely to have less training on issues relating to dementia. Where my mother likely will be in a shared room, which will be difficult given her agitation around strangers.
What I really worry about, what keeps me awake at night sometimes, is that one day she will act out with someone who doesn’t understand her disease and she will be placed in a geriatric psychiatric ward. We have already seen her spend the night in jail because of a lack of understanding of dementia. I don’t know if my soul could survive that turn of events.
By 2050, maybe there will be cures for various types of dementia. If not, the sheer numbers will necessitate more attention being given to identifying appropriate, affordable and compassionate care options. Hopefully it won’t take 35 years to make such options available. If it does, a forest of Easter trees won’t be able to give hope to those suffering from dementia and their caregivers.