In 2012 the state of
Maine started a task force to deal with the large increase of Alzheimer’s and
Dementia patients in our beautiful state. The task force held public forums to
learn more about the communities they are trying to serve as well as to teach skills
to local communities who have caregivers, patients and more struggling with the
debilitating disease. In 2012 it was projected that by 2019 there would be
28,000 people would be suffering from Alzheimer’s and that by the year 2025
that number would increase to 35,000 in Maine alone! Unfortunately, the numbers
are right on track. We have over 28,000 people suffering from Alzheimer’s
disease this year and more than 69,000 family and friends are providing care
for their loved ones.
So many don’t realize the pain others go
through when their loved ones start to suffer from dementia or Alzheimer’s. You
can watch a movie and see the pain the actors portray but at the end of the
day, they can go home and leave the situation. So many people can’t escape the
pain, heartache and deep depression that can come with this terminal disease.
Below we have a story by one of our coordinators talking about the day in the
life of a caregiver. Our coordinator does an amazing job with our Alzheimer’s
clients and client families because she understands where they are coming from,
she herself has been there before. We feel blessed that she is willing to share
her story with us…
As a new wife and mother, things were very
busy in my home. I worked fulltime and so did my husband. We had two small
children who were in preschool when my father-in-law moved in with us. I didn’t
know him well and what I did know I didn’t like to be honest. He was a drunk
who always tried to push every button I had! My husband and I barely had enough
time to figure out who we were as a new family of 4 and now we had this extra
person coming into our world. But I couldn’t say no either. He was older and
needed our help, he had nowhere to go. So, in he came.
After about a year we noticed he was
forgetting things a lot and unable to remember simple things, like his
grandkid’s names. Shortly after our third child, a daughter was born he was
diagnosed with Alzheimer’s. I became a stay at home mother and caretaker for
our family. The Alzheimer’s progressed quickly and before my daughter was a
year her grandpa was unable to remember how to walk, swallow, or even clean
himself up. A week before he passed away at our home, I had one of the hardest
days I have ever had. That is the day I’m going to tell you about in hopes that
it lets others know they are not alone.
I awoke to the sound of a weird cough. As I
sat up I felt my back attach me, the hard wooden chair I had fallen asleep in
wasn’t kind to me or my back. Grandpa was choking though so I pushed through
the pain to help him. I got him turned on his side and the drool slid out of
his mouth on to the sheets and floor that I will now have to clean…again. He
couldn’t remember how to swallow most of the time. Talking had stopped months
ago. He just looked at me with curious, sad eyes. His life was not his own, he
was just a shell. I got him on his back and sitting up so the saliva could run
out of his mouth. I bent down to wipe up the floor, this was a horrible
mistake. I knew better than to turn my back on him, his anger was the only
thing I could count on now. I was so tired and weak from nursing a 13-month-old
baby, and running around with two toddlers, I wasn’t thinking straight. Grandpa
grabbed my hair and violently yanked me around by my head. My face was now
covered by the drool that had fallen out of his mouth. He dropped me just as
quickly as he had grabbed me. My head ached and my body was ready to give in. I
wiped my face with a baby wipe and set him up properly in the hospital bed. I dropped
the head of his bed and rolled him to his side. Then I changed the adult
diapers he was wearing. After he was clean, I replaced the bed pad with a dry
one and got him a new blanket and sheet that was dry. I washed his legs up and
then went upstairs to get breakfast started for my young family. It was almost
5 am and the baby needed to be fed. Once the baby was fed my husband awoke and
helped with his father and daughter so I could take a shower.
The heat of the shower
felt so good on my sore body, but I had to hurry so my husband could leave for
work. As the owner of a construction business, he was constantly gone at this
job or the next, he tried to help with everything but there just wasn’t enough
time in the day. I stepped out of the shower and felt like I was stepping back
into hell. I brushed my hair only to realize I was losing clumps of it. I
quickly put my hair up and moved to get dressed and rush downstairs. The boys
were up and ready for the day. Now to go back downstairs and feed Grandpa. As I
tried to feed him, he refused, again and again, letting the food fall out of
his mouth. Feeling defeated I gave up.
Thankfully Hospice was coming today to do an intake. The boys were
fighting, and the baby was crying. I moved the baby monitor back downstairs to
watch Grandpa so I could also watch the kids. Grandpa had the TV on and was
watching the news, sort of. I had to run up and down between the children and
Grandpa, man the business phone, do the payroll and try to get all the bids
together for the following week. Exhausted was an understatement, my world was
crashing down and the weight of our world was on the top. I closed my eyes
while at the computer for just a second to clear my mind and then I heard it.
My 4-year-old screaming, someone knocking at the door and when I looked at the
baby monitor Grandpa had slid down again and was choking on his saliva; it had
only been a second! This is my life I thought… I jumped up picked up my
4-year-old yelled to the person at the door to give me a minute. Ran downstairs
put my son in the chair and lifted Grandpa up again. Then started up the stairs
again to get the door, realized I left my son, went back down grabbed my son
and ran up the stairs again! Out of breath, I opened the door to great 3
people… One was a hospice nurse who was here to do intake on Grandpa and the
other two were from the local head start. I had planned both appointments at
the same time. Of course, this would happen to me, I couldn’t keep my life
straight let alone anything else. They all came in, smiled and understood that
my world was over the top right now. They were all so nice and understanding,
but my house was a mess, the kids were a mess from lunch, and I know they were
staring at the fresh bruise on the side of my head. We all sat down in the
living room. We spoke about Grandpa first and how things were going. Finally,
one of the head start ladies asked what everyone was thinking…” why haven’t you
just put him in a home?”
I was flabbergasted! It never even crossed
my mind! He had always stated he wanted to die at home, so a nursing home never
crossed our mind. The lady who had asked took my hand to comfort me as I broke
down crying, trying to explain why we couldn’t put Grandpa in a home. They told
me it was ok and that they wanted to do some basic tests with my son to see
where he is at and the nurse wanted to evaluate Grandpa. I left the kids with
the teachers and took the nurse downstairs. He smiled at me, told me I was
doing a great job; he said it’s never easy, but you are doing an amazing job. I
felt so much better knowing I would be getting help. The nurse thought we
should get started with a “care package” that would have medicine for pain,
agitation as well as something to help with anxiety and stress. Grandpa had stopped
eating; he was in and out of consciousness and the only real emotion he ever
displayed around me was anger. The nurse came by every day that week. The first
two days Grandpa was focusing his anger at the nurse, he would hit, slap, and
grab at the nurse. I was strangely relieved that his anger was at everyone and
not just me. The nurse put Grandpa on a steady dose of morphine to help calm
him. By day three he was no longer moving, and I never saw him open his eyes
again. He laid there motionless, barely breathing and soon passed away on day
six of being on hospice.
My son started pre-K that same week,
thankfully making it less hectic in my home. There were so many people in and
out of our house from Hospice, everyone was so nice and helpful. I only wish I
had called sooner. Grandpa’s passing was hard on the whole family. If I could
go back and do it all again, I would have kept Grandpa home still, but I would
have asked for help sooner! There is no shame in asking for help and no shame
in not being able to handle it all on your own.
If there is one thing you take away from
the story of my life, I hope it’s that it is ok to ask for help! It's ok to
need other people! Don’t be like me and wait, there is help out there you just
have to ask for it!
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