So many people stop me at church, work, and school to ask “How is your dad?” I answer in my cheery (fake) voice, “Oh, he is fine.” Because, honestly, the truth at this point seems too painful for my family and disrespectful to him to utter much of the time. But yet, that truth remains. How do I tell them Dad is just fading away?
Originally, when I first began to write this blog, I created a timeline. A timeline that went from strange forgetfulness (that our whole family chalked up to depression over his wife’s cancer), to needing help with each meal, to taking away his driver’s license, on to our situation now – where he needs help with hygiene and toileting.
I don’t know that the timeline is important to the reader but, it was to me. I had to understand how we went from A to B to C to D so incredibly fast. So fast that every time we thought we had it “figured out” the game changed and we were all left scrambling again. It has not even been two years since we were told he has dementia. A year ago, he was still driving, albeit that was starting to worry us.
No one prepared us for this. No one ever told us what caring for Dad would be like. I have to laugh because, I remember saying something similar when I first became a parent. But, with a baby I might say things like, “He won’t sleep at night.” “He screamed for hours – teething.” “Why is he not talking like the other kids his age?” And, of course, those sage words of wisdom would appear out of many mouths, “This too shall pass.” What happens when it doesn’t pass? What happens when it actually continues to get worse?
And, I know we are not the only ones out there feeling this pull. I found myself at a bible study last Friday, sitting next to a woman who also homeschools. She has two young girls and takes care of her grandmother and mother. Yes, both. Our lives are so fractured as it is, how do we care for young children and still give our aging parents and possibly grandparents the care they need?
In an article titled, “We Are Entering the Age of Alzheimer’s” the author gives us some harrowing statistics:
Alzheimer’s disease is practically unheard of in adults younger than 40, and very rare (one in 2,500) for those under 60. It affects 1 percent of 65-year-olds, 2 percent of 68-year-olds, 3 percent of 70-year-olds. After that, the odds start multiplying. The likelihood of your developing Alzheimer’s more or less doubles every five years past 65. Should you make it to 85, you will have, roughly, a fifty-fifty shot at remaining sane.
Eighty-five, though! That’s infinity-and-a-day away. Except that, by 2030, the population of Americans aged 65 and over also will have doubled. At that point, the number of people suffering from Alzheimer’s or related dementias around the world is expected to hit 76 million. Twenty years after that, in 2050, the number will be 135 million, including new cases in rapidly modernizing places like China and sub-Saharan Africa. The cost of their care in this country alone is projected to hit $1 trillion per annum, inflation not included. http://www.newrepublic.com/article/119265/alzheimers-disease-statistics-show-illness-will-define-our-times
What this means to me is that, we are not alone. So many of my friends and acquaintances will have this experience – the experience as a caregiver to parents with some form of dementia. The article talks about how high depression is in caregivers and the toll it takes on their entire life. And, our family feels that. We are not even “done” and we can feel how it wears away at our limited time and tears at our hearts as we watch Dad disappear.
Many people my age say things like, “just put him in assisted living.” I don’t think people realize the cost of this – “Memory Care” they call it. Depending on your circumstances, we were getting quotes of around $7000 a month. We instead chose to use a home health care provider. The days she is there she cooks healthy meals for him. Takes him to movies he wants to see. Takes him on rides to the places he used to work. And, makes him exercise daily.
Recently, Dad’s hygiene needs skyrocketed and I found myself in a situation where once again, I felt like I couldn’t emotionally handle it. I actually had to call my husband at work and he took a sick day from his job as a principal at an elementary school to help with a toileting issue. Because my husband cannot leave his school building to do this every few hours, we decided he now needs seven-days-a-week care. Our health care provider is bringing another person on board. We are moving into a different phase in his care again.
We are the lucky ones though. While Dad cannot afford $7000 a month care indefinitely, he can afford his home health care right now. So many families out there cannot afford any outside help. So many people out there have to be the care provider to their parent seven-days-a-week. Please reach out to those people in your community. Trust me, they need your help.
But, you keep hearing my voice. My whole family has been affected by this. It is a whole family issue. So, here are the voices of my family. We are also lucky in this. We have each other.
The Sister (my sister who lives in another state)
The Sister’s Story: I was talking with my sister about how Dad’s needs unexpectedly changed in the last few weeks. She lives a few states over. I know she carries a deep guilt within her – guilt about not being here. I have the same guilt actually. Guilt over not being able to spend enough time with Dad or not being able to handle things like toileting issues. This is the affliction of the caregiver I think – feeling like we should be doing more but, finding that we can’t. The Sister calls Dad all of the time. Yesterday, she told me, “Erin, dad never picks up. He never answers his phone anymore. Does he know how to answer the phone?” Dad recently lost the ability to use a phone.
The Sister’s Voice: I feel helpless and useless. It is so emotionally painful to watch the person who raised me fall to pieces right in front of me and realize there is absolutely nothing I can do to stop it. I am filled with sadness and fear for a life that gave me everything. I wish I was there.
The Principal (or perhaps superhero)
The Principal’s Story: I have to put it out there – my mother chose her son-in-law to be her and my father’s medical power of attorney before she died. We get a lot of weird looks in medical offices when that comes up. But honestly, it shows the intelligence of my mother. She knew that this man was in a better position to handle and, at this point, MAKE, the big decisions. At a meeting planning her funeral, The Principal said “I don’t know what to do anymore. Lyn (my mom) and I were the bookends in this family, I lost my other bookend.”
The Principal’s Voice: I always relied on this man to lead me through parts of my life that before were just mysteries to me. Things as simple as rewiring something or fixing a pipe. It used to annoy me that he was such a perfectionist. No project we worked on ever quite met his standard. I was the one who would work to convince him that it was “good enough, good enough for government work.” Which of course was our joke because he worked his entire life for the government – poured his life into that job. Now, he seems so far away. Any little jobs I find I have to do, some of them even in his own house. – I get so sad because he is not there by my side anymore. He is lost and won’t return and I did not plan on that.
Little Dancer (10 year old girl)
Little Dancer’s Story: Last fall I left the girls with Dad for about an hour to go sign off on a carpet installed in our house. Prior to this, it was a normal occurrence. This was about a week after we had the doctor help us take away his driving privileges. Dad insisted on going somewhere and when little dancer explained she couldn’t drive, he got very upset. Little Dancer made him a sandwich and used distraction to talk him down. Please note, I never left my children with him alone after this incident – prior that, it was fine.
Little Dancer voice: Grandpa mainly reminds me of Grandma. I actually sort of like going to his house cause I like seeing him and I like thinking about Grandma; but he sort of doesn’t feel like Grandpa anymore. He has changed a lot. Sometimes he scares me. He is so different.
Crazy Girl (6 year old crazy girl)
Crazy Girl’s Story: Crazy Girl is almost too young to remember anything beyond Grandpa having Dementia. She likes to go to grandpa’s house because there are doll houses there. Doll houses built by her great grandfather. She slinks straight downstairs, stairs now protected with a “baby gate”. A gate that she can easily cross but that Dad no longer can access without help.
Crazy Girl’s Voice: I like going to his house because I love him. But, I am too shy to talk to him. I like his cereal.
Autistic Teen (14 year old boy)
Autistic Teen’s Story: We took Dad out for his birthday, just this last August. The Parkinson’s symptoms of Lewy Body have become so predominant that it is difficult to do trips like these. Dad had to use the restroom. Autistic Teen, with true (not the stuff you joke about) OCD jumped right up and said, “I better go with him and help in the bathroom.”
Autistic Teen’s Voice: There is a difference between who grandpa is and what has happened to him. He has gotten really confused over time. I mean people forget as they get older but it is happening faster for him. He is aging faster on the inside than on the outside. I try to talk to him but, it is hard for him to understand me anymore.
But there are still moments, moments of clarity. Tonight, Autistic Teen was trying to show Dad a video he took of two elk squaring off. After all, it is elk bugling time in these parts. Halfway through the video, Dad shook his head and softly said, “I am so sorry. I forgot what we were talking about. I’m sorry that my mind doesn’t work anymore.” Autistic Teen let the video finish, nonchalantly tucked his phone away, and said, “That’s okay grandpa.”