What are nights for?
The title for this comes from some
lyrics I heard once and I’m sorry that I can’t remember from who. The response
was, “to separate the endless days” as either an answer or possible solution.
Caregiving and all that it can
entail has been on my heart lately. I’m going to talk about our experience and
it’s going to have to be deeply personal in places. The reason is that I see
more friends, family, acquaintances and just the population in general having
to deal with caregiving as our aging population increases. Spouses taking care
of spouses, children and vice versa.
One of the first thing that I would
like to say especially to those contemplating being a caregiver is that not
everyone is cut out to be a caregiver. The second thing is that not everyone
has a choice. The cost of caring for others is crippling in this country unless
you can afford fifty thousand a year. Your spouse, significant other or support
group needs to be totally invested. There is no dishonor in not being able to be
a caregiver. My mom and dad tried taking care of her mom at one point in my
life when I was a teenager. It was not good and ended badly. They should not
have tried. They just weren’t cut out for it. That’s just the way it is.
My intention of writing this isn’t
for recognition for us because many others are out there having done or are
that are currently doing the same thing. If you have questions private message
me. If you have something to add to the discussion please do so. I’m going to
post this in two places, at my blog and here on facebook.
Caregiving can be as rewarding as
it is demanding. Providing care to another can be vexing, frustrating,
fulfilling, depressing, enlightening, emotionally draining, humbling,
challenging, physically demanding, strengthening and more. You will find
yourself at times going through every emotion there is in a day, sometimes
within minutes. The caregiver often becomes the advocate for the person in
their care. A child becomes the parent and there can be resentment. The caregiver
also becomes a symbol of the ward’s inability to care for themselves. Paul
would get mad at me. I would get mad at Paul. It isn’t unnatural to have that
happen. Just remember to apologize and go on. When I see a caregiver being too
abrupt, speaking too harshly or jerking their ward around too much I suspect
that they should not be caregiving. Perhaps they only need a respite from the
demands. Perhaps they need to look into other alternatives.
As a caregiver you will end up
doing things that you never contemplated doing. If you have ever taken care of
a baby, imagine doing the same things that you did with them only doing them
with an adult. Dealing with the sheer amount of urine, bowel movements and
cleanup can be daunting in and of itself.
You will make mistakes. Paul took
up to 15 medications several times during the day a couple of hours apart. If we
messed up his pills he paid for it. He had a bad day and there was nothing that
we could do about it. Being able to keep track of and take their medications on
time is perhaps one of the first things to go especially if any level of
dementia is involved. The concept of time is a tough concept to teach children:
time requires a higher functioning ability. (I can remember one of my boys
asking me to explain about tomorrow. The next day they asked if it was
tomorrow. My answer of tomorrow never actually gets here; that yesterday this
was tomorrow but now it’s today did not resolve the issue.) I will never forget
the look on dad’s face when the doc asked him to draw a clock with hands and
show a particular time. He was unable to do it. There were other soul-crushing
moments for him. You just have to accept them and move on.
The person in your care will have
good days and bad days, especially if they have a debilitating illness or
injury. Hopefully they will have more good days than bad for a while. Eventually
the bad days will outnumber the good. You fight for the good days. You try to
be positive. You try not to cry in front of them.
Just a little background to give my
bona fides for being qualified to write on this subject. Shelley, my wife, and
I along with my brother were caregivers for almost 17 years. My younger brother
along with his new wife continues to provide care as of this writing. (Younger
at our age is a relative term.) Shelley and I are done for now with providing
care with the passing of her father, Paul, in June of 2015. Coincidentally, he
passed away on the same day of the month that my father did in 1974.
We were fortunate in that in both
instances of our providing care for family members we were able to start off
slow with regard to the level of care that we needed to provide. It started
with our mother in 1999 when she had a stroke and subsequent surgery to remove
a brain tumor. Paul came to live with us in 2003. He had been diagnosed with
Parkinson’s in 1997 and had finally reached the point where he was needing
assistance in life. Mother passed on 2009. Paul in 2015. In both instances it
was a blessing and tender mercy.
I have an Aunt and Uncle with
children who went almost immediately to having to provide full time around the
clock care for a decade for their son injured in an accident. My Uncle passed
away during this time and my aunt soldiered on. I mention her because she
served as my inspiration during dark times when I wasn’t sure that I was able
to continue doing the job before me.
I don’t know if I/we have any
lessons to impart. There is just our experience and perspective to pass along.
In other words we just did what we did in the circumstances that we were in. We
were fortunate to be able to pull it off. We provided for our loved ones.
Mother and Dad were able to be in their homes when they passed.
Ideally the person that is being
cared for is happy, cooperative and a willing partner in facilitating their
care. It never hurts to dream and I’m sure there are instances where this
happens. I would often tell doctors when Paul would express irritation at
things that I would do in caring for him that I understood his position and irritation.
I was the first face he saw of a morning, throughout the day and into the
night. He heard my voice throughout the day. I was a cheerleader and coach. There
were times he called me sergeant. He got sick of hearing my voice. I got sick
of hearing me! Because of his dementia I would have to repeat the same things
day after day. That’s the deal. Paul often didn’t know that his first time
hearing something was my thousandth telling him.
For me I had to be dispassionate. I
had a job to do. Paul and I only cried together a couple of times. I told Paul
from the very beginning that I would always be honest with him. Dementia can be
a huge hurdle to deal with in caring for someone. The hard part for me was
watching someone that I loved dissolve mentally. Paul said that he felt like he
was shrinking. He was a college-educated aerospace engineer and was unable to
dress himself. Now, he could carry on a perfectly normal conversation even
though his response time was slow. There are lots of different kinds and degrees
of dementia. Paul’s particular type of dementia is called Lewy body dementia
and spatial relations as well as sequencing are affected. His memory was also
impaired in some ways. Now, he might try to put his pants on over his head even
though he knew that was wrong. He just couldn’t translate that knowledge into
doing it right. I spent hours with him trying to help him figure out how to get
that ability back. We tried as hard as we could to help him hang onto the
things that he was able to do for as long as he could before taking some
function of daily life over because once you start doing something you’re going
to keep doing from then on. Shelley would spend hours fixing computer-related
problems for him until it finally became too much: computers require higher
level functioning. Eventually, even on/off switches became too difficult for
him to figure out.
This is important: there are
medications that can help with dementia. We saw definite improvement with Paul
when he started taking them, even though they won’t slow the progression of the
disease.
Caring for our mother was an
entirely different story and she would want me to say on record that she never
could believe that we took her car away from her because she was perfectly
capable of driving. PERIOD. (Paul, on the other hand, voluntarily surrendered
his keys when his reaction time became too slow to drive safely.) Towards the
last Kim was a variety of people to her. He would be one of her brothers long
gone bringing her coffee of a morning. He could turn around, come right back
into the room and be Kim.
She would forget at times that she
was an invalid and unable to take care of her most basic needs. One incident
that comes to mind is when Kim and I were changing her because she had wet through
her depends.
“WHAT ARE YOU DOING?!”, She asked.
I should really add a lot more exclamation points here in addition to using all
caps.
“Well, mom, we’re changing you.”
“WHAT WOULD THE NEIGHBORS THINK?”
“They won’t know, mom, so it isn’t
any problem.” (This was not a good answer.)
“I’M CALLING THE POLICE!”
During this time she tried to bite
me several times. Then of course she forgot about this happening as well.
Caregiving can be an incredible
strain on a relationship and household in every aspect. I can’t stress this
enough. My brother had a marriage come apart while caring for our mother. But
he soldiered on. Shelley and I had close to a zero social life and hadn’t been
to a movie together in years. Finances can be challenging as well. If a home isn’t
handicapped equipped retro-fitting can get very expensive even for just the
basic necessities. Just building a ramp for access into the home can be
expensive if you don’t have enough money to begin with. Paul did. He could also
afford all the consumables like Depends, pads, wipes, lotions, cleaning
supplies, etc. The washing machine was constantly running so you can figure
increased utility costs and laundry supplies as well. All the doctor
appointments will take a lot of gas. This list could go on but this is just to
give you some idea of the impact. He was also able to afford equipment not
provided by insurance or Medicare.
Many older homes can’t be equipped
without major structural changes. The bathroom our mother had access to had a
28 inch door and no way to make it larger. She had to be carried in since she
wasn’t able to walk and had a shoulder injury that prevented her being able to
use grab bars. These are the kinds of obstacles that people often have to face.
Work can also present a problem
because you will miss work if you have a job. Quite often people realize that
they can’t do both and have to choose. Shelley had to work and when she got
home she would spell me. I would try not to wake her when I got up at night to
tend to Paul. He had a call button that would dial my cell phone when he needed
something. I prided myself on being able to respond within a minute and a half.
You sleep and live in snatches.
There was one year that I got one good night’s sleep. We had grabbed an entire
weekend while my brother watched Paul. I was able to sleep a night straight
through. I didn’t even get up to pee. I don’t say this like “oh poor me”
because I thought that it was pretty special to be able to have that night and
then remember how special a night’s sleep can be. We learned how to appreciate
the smallest or even mundane events. Now I find myself with an attention span focused
to incremental time.
I provided a little more detail
than perhaps is necessary but I want to stress that caregiving can affect every
aspect of your life. The days stretch out before you but the focus is on the
day and what do you do tomorrow. My brother and I would often pray for just
getting through the day and having the strength for tomorrow for one more day.
I use the words “can” and “may”
often when talking about caregiving because every circumstance is different. I
was not an expert on Parkinson’s disease I was an expert on Paul having
Parkinson’s disease and how he was affected. Kim was an expert on our mother
being an invalid. People respond to medications and treatments differently.
What works for one won’t necessarily work for another.
When ultimately your ward passes
there won’t be any medals given. All I can tell you is that there is joy in
having done it, having made it. Our mother wanted to pass away in her home and
by grace we were able to provide that. Because of her dementia she didn’t even
know that she was in her home but that’s okay. We did. We knew that she was in
the home where she had raised us and lived with our father. On what turned out
to be her last night she looked so comfortable in her chair that my brother and
I decided not to move her to her bed. We never did that. That night we did. She
passed during the night in her favorite chair.
Kim and I were at a family dinner
in Halstead, KS after mom had passed and couldn’t shake an uncomfortable
feeling that we both had. Then we realized that it had been years since he and
I had been in the same room together since one of us wasn’t with mom.
Paul’s ending was different. He had
Shelley and I sit down on a Saturday and told us that he didn’t want to go on. Though
this was not the first time he’d said that, it was clear that this time it was
different. Because of the way the conversation went I told dad that I wasn’t
going to put a pillow over his head. Shelley had to affirm that we weren’t
going to end him. We told him that we were caregivers not life takers. We couldn’t
stop doing our best to care for him. He was tired. So he quit – basically
stopped taking food and water. We called hospice in on Monday and he passed
away that Wednesday.
What a blessing hospice care was!
Thanks to a friend, we knew how to take advantage of this wonderful resource.
Too many people are not familiar with what they do and how they can ease the
end of life transition. If we had only known, we could have had the same
comfort for my mom.
Paul had reaffirmed his faith with
Pastor Rob previously and even now that still fills up my heart and makes me
cry with joy.
Then after everything is over,
after winning the struggle, after accomplishing the goal of tending to a loved
one, guilt can set in. Shelley and I both couldn’t shake the anxious feeling
that would set in at prescheduled times when we would have been doing something
but we had nothing we needed to do. I suppose that it’s a form of survivor’s
guilt. Guilt at wishing that I had done a better job. Guilt at feeling good at
having a life again.
But above all else I want to say
that providing care for another human being is one of the most intimate,
beautiful and rewarding acts that one human being can do for another.
We would do it again in a heartbeat.