NOTES FROM MY FUTURE SELF

         I am a healthy 60-something, and am doing everything I can to keep it that way.   I feel fine.  I am not blind, however, to the fact that, my best efforts notwithstanding, there is a fair chance that sometime between now and when I move on into the great mystery that is death, I will not be as healthy as I am now.  So, just in case I am not able to share these tips later (or forget them. . .), here are some notes from my future self to my future caregivers, based on what I learned caring for my mom during her declining years and what I have gleaned from my first year-and-a-half as a hospice volunteer. *

         Let me start with what I don’t want because I am more upset by these than by the things you are not doing. 

        

1.      Do not leave me alone in a room with a blaring TV over which I have no control.  I prefer music or silence.  On the other hand, I would be happy to have your company while I watch a show of my choosing. 

2.      Do not call me “young lady.”  I know how old I am; you are not flattering me, only patronizing me.

3.      Do not argue with my confusion.  If I mistake my nurse for my mother, ask me what my mother has to say.  If I say I am planning a trip, when you know I can’t walk to the bathroom, ask me about what I am packing and who/where I will visit. 

4.      Do not talk about me as if I am not there.  Assume I can hear you, even if it doesn’t look like I can.

5.      Do not tell me about the sacrifices you are making for me.  I can’t do anything about this.  Assume that someone will make sacrifices for you when your turn comes.   

6.      Do not tell me how upset you are by my condition.  Find someone else to share this with.

  

         Remember that I once had a life as full as yours, and would like some help in filling it now when I am not able to be as active as I once was.  Please do whichever of the following things do not cause discomfort for me or you.    

1.      Take me on outings, if I am able.  I miss being in the world.    

2.      Even if I can’t manage outings, take me outside or place me where I

can see outside.  I was once an active gardener.

3.      Talk with me.   If I tell the same stories over and over again, ask me about something more interesting, such as what it was like to be a teenager in the ‘60s or how I spent my childhood.

4.      If I can’t talk, talk or sing to me.

5.      If I am able to read, bring me books and magazines.  Read to me.  Read to me even if I am still able to read. 

         If I have dementia and can’t tell you what I would like to hear, try reading something that I loved as a child or young person.  (Hint – For me that would be Anne of Green Gables.)  I spent time reading to a hospice patient with dementia who loved Dr. Seuss. 

6.      Hold my hand or rub my feet.  I haven’t lost my need for human contact.

7.      Play music for me.  Ask me what I would like to hear.  If I am not able to tell you, and you know what I loved when I was young, try that.  Otherwise, you are probably safe with classical music. 

8.      If I am confined to my chair or bed, bring me something soft to hold in my hands.

          (If I have dementia, I may still respond to different textures—give me a sampling of different materials to touch.  I might also like a baby doll to hold.) 

9.      Help me to get dressed every day for as long as I am able. 

10.     Be patient with me as I try to keep up with technology.  (OK, you can start on this one now.)  I would like to use the current email/text equivalent to stay in touch with the outside world for as long as I can. Notice when I am no longer able to do this, and see 11and 12 below.

11.     If I can read, send me cards or notes.  I love to feel connected.

12.     If I can answer the phone, call me.  Like I said in No. 11, I love to feel connected.

         My future self thanks you and, if you happen to be a caregiver now, she asks you to take these suggestions to heart.  She would also love to see your additions to this list.  Please share them in the comments below.   

*     This post expands on a previous post titled The Top Ten Things That I Learned at the Assisted Living Facility.  


Photo by Cristian Newman on Unsplash

WHAT WOULD THE DALAI LAMA DO?

            My mother is 93 years old. For the last 11 years she has lived about a mile from me in an assisted-living center.  For the first 8 or 9 years she did very well, taking the bus provided by the assisted-living center to stores and doctor appointments, enjoying books and crossword puzzles and outings with family.  

            And then things began to change.  Over the last couple of years there has been a rapid downhill slide. Her eyesight and hearing are failing.  She is in constant pain, and becomes frailer and more confused each day.  Outings exhaust her.  As her world becomes smaller and smaller, she has few pleasures left.  In fact, she states emphatically that she would like to slip away in her sleep.  

            So what does this have to do with the Dalai Lama?  Here’s where I need to talk about my role in my mother’s life.  During her early years in assisted living, I called her every day and took her out once a week.  Now, I visit her several times a week, write checks for her, do her laundry and shop for personal items.   She can no longer go to a doctor appointment without a family member to keep track of what is going on.  She calls me most days—sometimes more than once—to ask me what day it is or what time it is.  In short, I am now among her caregivers.   Fortunately for me, I am not alone.  One of my brothers handles her finances from the east coast.  My husband helps out with appointments and errands, and my ex husband (bless him) steps up again and again, visiting her and taking her to appointments.      

            So, with all this help, what’s my problem?  It's just this:  Help notwithstanding, on any given day I may feel tired or grumpy or sad or helpless or perhaps several or all of the above.   When I visit my mom, I am never sure who will greet me.  Will it be happy-to-see-me, grateful mom or will it be unhappy, critical, impossible-to-satisfy mom?  Of course, it is true that she has plenty of reasons to be unhappy.  See paragraph two above.  Still, I confess that there are days when my patience is thin, thinner than I would like.   There are days when I don’t want to stop on my way home from work after a long commute.   Days when I don’t want to navigate a confusing conversation in which I am likely to be blamed for the confusion.  And on days when I am happy to be there, when I feel honored and pleased to be able to tend to her, my heart breaks over her frailty and over her isolation.  It must be terrifying to wake up from a nap and not know what day it is or whether it is time to eat or to get ready for bed.   And then there is the sad fact that every person of her generation who ever mattered to her has passed.  And she wants to be with them.    

            So how can I be my best self with her?  What, I asked myself recently (changing the bumper sticker slightly) would the Dalai Lama do?  Or the Buddha?  Or, to return to the bumper sticker, Jesus?  Here’s the funny thing.  Although I have a pretty good idea what they would say about love and compassion and doing unto others and doing unto the least of these, I have no idea what they would do.  None of them, to my knowledge, ever played the role of caregiver to a sick or elderly family member.  We don’t know if Jesus had a wife or children, but we do know that by the time he began his ministry, he had no family in tow.  The Buddha left his wife and child when he went off to seek enlightenment, and, as far as I know, did not return to check on them.  The Dalai Lama was removed from his family as a child.  If he has put in stint as the caregiver of a family member, I have not heard about it.  

            So, although I revere these enlightened beings and try (with occasional and very modest success) to live by their teachings, they are of no help to me as role models in my current situation.  Where do I look?  I look to my friends.  I look to the friend who drives two hours every week to spend the night with her elderly parents, who organizes caregivers, and jumps in her car whenever one of her parents takes a turn for the worse.  I look to another friend who flies to Boston from her Oregon home every three months to spend two weeks relieving her sister, who tends to their mother the rest of the time.  I look to the friend who saw two children through bouts of mental illness.  I look to my sister-in-law’s sister to who gets up every morning and tends to her severely disabled son.  And I look to parents everywhere (including myself many years ago) who walk the floor with their crying infants when they would love to be sleeping in their beds.

            What do these people have in common?  They show up.  They show up when they are tired.  They show up when they are grumpy.   They show up with as much good cheer as they can, and when they run out of steam and cheer, they continue to show up.  They try not to lose it too often and to forgive themselves when they do.   They are my heroes.  Their strength gives me courage.

            So, I will go to hear the Dalai Lama when he comes to town next month, but I will look to the ordinary mortals who deal with mortgages and food shopping and finances and sick family members and crying children for my role models.  Thank you all – you know who you are - for being with me on the path, for laughing and crying with me during the hard times, and for helping me to find my way.