Dear
family and friends,
Today I read a beautifully written,
well-thought-out blog post entitled “What I’ll Say to My Children if I’m Diagnosed with Alzheimer’s” . Perhaps
it is because I am recovering from a particularly bad infection and am,
frankly, a bit emotional since I am physically and mentally drained. But as I
read, I made a purposeful decision to write this open letter – not just to my
children – but to anyone who is experiencing a downward shift in the mental or
physical health of one or both of their parents, with the hope that it will
help during the most difficult days you face ahead. I have written often about
the multiple conditions that already make activities of daily life terribly difficult
for me, and I have a somewhat increased risk of developing Alzheimer’s due to a
mutation in the APOE gene. So it is important to me that my children and loved
ones know that they have permission to do what is necessary and best for me (and them) regarding
skilled nursing care should the need arise…and they may do so without feeling
any guilt or inadequacy.
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| Photo Credit: Keith Varnado |
I know first-hand how Alzheimer’s Disease
ravages the mind because my father had it; I learned much about this terrible
disorder as I watched my daddy retreat into the shadows of fear, dismay,
confusion, bewilderment and disorientation as his disease progressed. When the
time came to choose a facility for him because he needed ‘round the clock
medical care, my mom and I visited multiple nursing homes. We left almost all
of them, our hearts broken and tears streaming down our faces, because the
conditions were deplorable. How could we possibly leave my beloved daddy in
such a place? Not one of them was acceptable. But we persevered, having armed
ourselves with prayer, knowing that God cared about our needs and heard our
cries. We finally found a lovely, brand new facility, right across the highway
from my home; we were at peace that we had, in fact, found the best place for
Daddy’s care.
It was a tremendous relief to be able to
spend time with him daily, and it was because I interacted with him
consistently that I finally (sort of) adjusted to the role of “parent-daughter”
rather than just “daughter”. I took an active role in making sure his clothes
were laundered, that he ate correctly, and I attended the Plan of Care meetings
as much as possible. My sweet husband, Gary, took on the task of keeping Daddy’s
beard trimmed, and Daddy would relax so completely that he would fall asleep
every time.
The memories forged during the last 6
months of my daddy’s life are dear to me…cherished treasures for which I am
eternally grateful. And it is because of those precious moments that I gleaned
some nuggets of truth that I am prayerfully passing on to you:
- Love, honor and respect your parents, especially as they age and their health – both mental and physical – declines
- Please don’t argue, regardless of whether or not what they say is factual or even makes sense; their perception is their reality, after all
- Visit often. Daddy used to wait for me in the lobby of the nursing home; he might be confused, even disoriented, but somehow he knew to expect me every single day. More often than not, he had concerns that he couldn’t wait to share with me…bewilderment and fears based on his reality. All I had to do was listen and hold his hand; it was amazing what a calming effect that had, easing the burden of his distress
- If your parent makes a reasonable request, be sure to oblige. I remember one evening when there was a band playing country music for the residents, and Daddy was so excited that Gary and I were there to hear them. It was a night when he was unexpectedly clear of mind. I had never known my father to dance…I didn’t know he liked it at all, although I knew he loved music. He remembered, though, that Gary and I loved to dance, and had recently even owned our own dance studio. So when the music began to play, he asked us to get out on the floor and dance. We didn’t have the “proper” shoes, so we told him “no, we’ll do it another time”. But there never was another time, and he died shortly thereafter. It is one of my greatest regrets because it didn’t matter that we didn’t have our dance shoes on…all he wanted was to see us dance. Though he tried to hide it well, I still remember the flash of disappointment in his eyes and it makes me sad to this day.
- Pray for your parents, then put action to your prayers. If they enjoy music, bring CD’s and a player so they can listen to their favorite artists. Make a photo album and go through the pages together often. Surround them with pictures of family and encourage your little ones to make artwork for them to enjoy. Bring them their favorite foods or treats. Most of all…LOVE them.
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| Photo Credit: Keith Varnado |
“Honor your father and your mother, so that you may live
long in the land the Lord your God is giving you.” ~Exodus 20:12~
God
bless you, I love you…
Kathie
Lea
