We all give what time we can to dad. Some of us are more generous
than others with our time. I can tell you that Hillary gives her time to an extreme level, but as I mentioned before, I think it is a
way of grieving for Dad before he is actually lost. I fear for her and
how his eventual passing will effect her. The one thing I know for sure is that
he loves her visits. Her lively conversation brightens his day, makes him laugh and, in a
way, is easier on him then chatting with others because Hillary
dominates the conversation. She really chatters the whole time she is
there and doesn't stop until she leaves. Most of my visits start with me
trying to scoot her out of the house. Like Columbo, there is always
"Just one more thing..." she has to say, ask or show him.
Even Dad is shoving her out the door after a while, "Go home! Try to be a good girl!" he insists.
"I
don't have anything going on in my life to get me into trouble", she
laughs (true, Dad IS her life) and then she wrangles her giant boxer dog out
the door.
While this is going on, I sit back and try to stay out
of the way. Her time is her time and I don't want to interfere. He so enjoys her
company I don't yet have the heart to get annoyed with her. From inside
the house I can hear her jabber all the way to her car. After she drives
off and Dad shuffles back in, he always smiles and shakes his
head. "JEEZ!!!" he sighs loudly, followed by a chuckle.
I snicker,
"I know, right?? I want to tell her 'TAKE A BREATH FOR HEAVEN'S
SAKE!'" We both laugh and continue with our visit...but it's a fun note
on which to begin.
In stark contrast, Paula is so very
level headed and her visits are more subdued. Her entire
Sunday is spent with Dad, attending church, covering bills, discussing whatever the
business at hand may be, or catching a sports game on TV. She also
usually surprises him with a homemade dessert of some kind. Recently I
noticed that the lock on dad's back door was a little sticky and
although it would probably be an easy fix, I suggested to Mike that we
make an unannounced stop on Sunday afternoon to take care of the
problem. Mike and I walked in and saw Dad sitting at the table eating
(or, rather, not eating) lunch with Paula, her 4 year old grand daughter
running around in the family room, playing. Mickey's bird cage had been
pulled up to the table so he could also enjoy the company. I wondered
what had transpired prior to our arrival because Paula seemed a bit
tense. It could have been anything, maybe not even having to do with Dad
or the visit. Dad didn't talk much. I was struck by how old and frail
he looked. Was I
that oblivious during my visits that I had to see him in a group to
recognize how much he had aged? He seemed 10 years older then just the
year before. Maybe it was just because I mostly see him at night and the
dimmer lights are kind.
We said our hellos and set
to the task of fixing the door. Dad kept asking, "Who's over there? What
are they doing?" and Paula would explain again and again, "Mike and Erin
stopped by to fix your lock." I know that having to repeat herself was
starting to get to her but at least it didn't take very long...and we
are all pretty used to the loops by now.
When we finished we sat
down with them for a while. Paula kept reminding him to eat and continued
with the rest of the day's business, but she thanked us profusely for
taking care of the lock rather then leaving it to someone else. Really
it was no big deal; it needed to be done. As rigid as her approach has
always appeared to me, she bids farewell with such tenderness, hugging
him and kissing his cheek before she leaves. "I love you Daddy", she
says softly. For a moment the rigidness is gone and his loving
daughter comforts him. She is a living angel. I wonder what stage of
grief she may be experiencing. She seems to have accepted our daily
reality, perhaps
even more so than the rest of us, but I think she wants to believe that
Dad is not so far into the disease as recent events would indicate.
My
readers may notice I don't bring up Tom's care giving style often.
Believe me, he plays a crucial part but because our visits never overlap
I never have much of an opportunity to see how he handles situations.
The one thing he has to offer that the rest of us do not is his
stories about flying. I am sure he fills much of his visits with new
tales of aerobatic competitions, planes he's planning to build and
Danielle's budding interest in becoming a pilot. He also brings his wife
and Danielle to visit and, as we all do, feeds dad and Buddy, and makes sure Dad takes
his meds. While he, like all of us, considers this schedule an
imposition, he soldiers on and has played an
important role in filling in when one of us is unable to take a shift.
Considering his long work hours, his wife's illness and the fact that he
has a teenage daughter, I don't think anyone could really ask much more
from his contribution.
Not to be overlooked, Bradley, my nephew also takes at least one shift a week. As a grandchild, I think it is only fair that he takes the fewest shifts. He has a new wife and a toddler to think about and having just started his engineering career I think we all can agree that if Dad were in his right mind he would be completely opposed to Bradley being shouldered with the additional burden of caring for his aging grandfather. That he contributes at all is a gift for which we are all grateful...and he does a remarkable job with the few shifts he is allotted.
When it comes right down to the
brass tacks of our little group of caregivers, everyone who helps is
important and no matter how large or small the effort, anything that
lightens the load is appreciated. Our system of visits is probably the
only barrier between Dad and a group care facility. I don't know how much
longer we can endure since the symptoms are becoming more difficult to
deal with daily.
My formerly eloquent father tries so hard to talk intelligently but, especially in the past three months I have noticed him grasping for words, struggling over language like trying to ride a bike through gravel. He knows instinctively what he is trying to say but can't get the traction he needs when it comes to vocalizing his thoughts. He stammers, stumbles and slides around, sometimes giving up in mid sentence. When this happens I help him out as best I can but I know it hurts his pride. Sometimes it's best to let him drop his thought or help him by changing the subject entirely.
In addition to his speech problems his mobility is becoming alarmingly limited. Dad struggles to dig himself out of his chair when nature calls. I refuse to invade his privacy when he does this but as he shuffles to the bathroom I know I won't see him again for at least a half an hour, the implication being that he struggles just as much, if not more, using the facilities then he does getting in and out of his chair. Occasionally if it seems he has been gone for an unusually long time I will call out, "Dad? You okay in there?" I hear some shuffling followed by an annoyed, "I'm coming, I'm coming..."
"Just making sure you didn't fall in", I tease.
"Wisass..." he replies with muffled humor.
Getting up and down is one thing, but when whoever has the morning shift finds him sitting in the same chair he was in when the last caregiver left the night before, wearing the same clothes, with no lights or TV on, we all know that more then likely he has not moved since his last visit. I have read enough about Alzheimer's to know that one of the advanced stages is such loss of mobility that the afflicted patient ends up confined to a bed or chair. I fear Dad has already chosen his spot. Keeping him moving, motivating him out of it is essential if we are to continue any reasonable quality of life.
....and that's where Buddy comes in.
(to be continued with Buddy, Dad's Hero)
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