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
Photo by Cristian Newman on Unsplash
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