Alzheimer’s in Maine

- Private group -
Wed, 05/08/2019 - 9:09am

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. 
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    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.

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    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.
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    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.

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    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!