The Easter Tree: An Update on My Mother

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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.

According to the Alzheimer’s Association, by 2050 as many as 16 million people may suffer from Alzheimer’s disease and other dementias.  That is more than triple the estimates for 2012.

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.

 

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  4 comments for “The Easter Tree: An Update on My Mother

  1. Bazel
    April 24, 2014 at 5:47 pm

    I found your blog from the ftdsupportforum.com and beyond being very well written, it is also like reflecting in a mirror of the last 8 years of my life. That being said, I would suggest that you reach out to the local chapter of the Alzheimer’s organization and/or the state’s senior ombudsman (if KY has one) to hopefully identify a local placement agency that can help your family learn and visit independent care homes in the area.

    My mom was in a formal Memory Care Setting for just over 5 years, with prices similar to your mom’s. This setting was the right option when we first moved her and for some time after that I felt strongly she was in the best place. About a year ago her facility went through some staffing changes and I no longer felt she was in the best place, plus with her physical health still being very good (she will be 75 next month), I needed to move my mom to a lower cost, better care setting that would allow me to preserve my ability to continue to care for her for longer time period if needed. In the end, I found a private care home at about half the cost. Hopefully, these options exist for your mom too!

    Take Care,

    Bz

  2. April 26, 2014 at 4:33 am

    I understand every word that you write. We are very much alike. Keep writing!
    Jodi

  3. Betty Pass
    April 30, 2014 at 4:42 pm

    God bless you and your family, Kim. I will continue to pray for you. You’ve been such a caring person for everyone, including me, and I know somewhere in your Mom’s heart and soul she loves you, and she is grateful and proud to have a daughter like you. I’m praying….Love you, Betty P.

    • May 9, 2014 at 2:52 am

      Miss Betty, your kind words mean so, so much to me. You are such a lovely person and I am proud to be your friend.

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