I have been pondering this entire dementia thing. As far as the type of dementia in our family, we have been dealing with Alzheimer’s and mom is entering the final stages. It has been a long, long year and some months. And on other planes, it has been a whirlwind. We learned so much about so many things.
I may anger some of you when I talk about this, but there is an ugly side to this disease. The care givers are on the receiving end of so much pressure and grief. When you choose to become a parent, you have a child, whether naturally or perhaps adoption. However you do it, you become a parent. And there is so much responsibility that comes with it, but it sort of just becomes a natural thing to do. When you take on the responsibility of caring for a loved one with a dementing illness, it differs vastly from becoming a parent.
When you choose to care for your loved one, in your home (or theirs), you take on a myriad of responsibilities and have to make so many choices and decisions, it can become daunting. It can be overwhelming. And it can make you sick, doubt your sanity, and cause you to lose contact with friends and a life outside of caregiving.
They (the people who teach and try to prepare us for the act of caregiving) will use the term, “anchor.” You become the anchor in the world of the person with Alzheimer’s. Your days revolve around their needs. When you step away, their anchor is gone and it is difficult for others to care for them. When I would run to the grocery store without mom, I would return a mere hour later, and to her I had been gone the entire day, or even longer. When she was in a rage one day, she said to me, “What do you care? You are never here! You are gone all the time and I am alone all day long.” Her reality was so far removed from the truth, but I had no way to convince her otherwise. I had no way to share with her that she could not leave me alone to even go to the bathroom or to shower. That when I left the room for more than 10 minutes, she was up, calling my name, looking for me. Every day.
When I had some wonderfully lucid moments with my mom over a year ago, before Alzheimer’s completely took her over, we had deep and engaging conversations. Our conversations centered around what she wanted, and how she wanted, to spend the end of her life. We chose to have my husband and I jointly share the responsibilities of POA for both medical and financial decisions. And mom opted to have a DNR in place. She does not want her life prolonged, especially if she cannot be emotionally or psychologically present. Everything was notarized and copies were given to the local first responders, as well as local urgent care and emergency rooms. We all felt very comfortable with our decisions. And then, well, then Alzheimer’s started to take over.
Everyone will tell you all sorts of platitudes about how the person with Alzheimer’s is suffering, and if you think you (the caregiver) have it bad, they have it worse. That all of us caregivers need to remember how hard life is for them. That we need to subsume our lives to care for theirs. Well, here is where I will annoy some of my readers. I disagree with this attitude, with this way of dealing with our loved ones.
And I realized that my will, my pain, my life had been subsumed completely into my mom and Alzheimer’s. Her suffering was my suffering. Her pain, her discomfort, her desires, became mine. I believe that Alzheimer’s is one of the most self-centered diseases there is. It all revolves around them. There are moments, yes, when they are fearful and confused. But I believe these moments are only in the outer stages of this disease. By the time the caregiver is nearly bereft of their own life, being totally subsumed into their loved one’s life, the disease has progressed enough that it has become completely self-centered. The loved one only cares about what is happening in their mind, in their immediate world. And they have no knowledge or perception of the real world all around them. That is when caregiving can become a hazard to the caregiver – emotionally and physically.
According to statistics from the Alzheimer’s Association, over 2/3 of caregivers report substantial emotional, physical, and financial difficulties, versus those who care for loved ones with other illnesses. Nationwide, caregivers provide over 18.4 billion hours of caregiving per year, at a value of over $232 BILLION dollars, which is absorbed by the loved one’s families – for Alzheimer’s disease. It is projected that every 65.6 seconds, someone is diagnosed with Alzheimer’s, and that 1 in 3 seniors dies from complications due to Alzheimer’s disease. It is overwhelming our system of medical care, financial aid, and our caregiving families. It is an epidemic. Between 2000 and 2015, deaths from heart disease have decreased by 11%, while deaths from Alzheimer’s have increased 123%. Ponder that for a moment. Oh, and these figures are just for the United States. They do not reflect the numbers worldwide.
And so, as unpopular as this is to say, burnout is real. We caregivers get sick. Either emotionally or physically, and sometimes both. There are those who guilt trip those of us who just cannot continue down the caregiver path. They say it is cruel to place a confused loved one into a facility. However, I think it is cruel to be selfish, on the one hand, to think you are the only person who can care for a family member. Yes, there are horror stories of people in wheelchairs in hallways, drooling onto their shirts. People with bed sores because they are not cared for. There are those who die of starvation and other causes of neglect. There are horrific places we warehouse our senior population. I am not saying otherwise. But there are some amazing people who provide care, in some wonderful places, when we just cannot manage it another day. It takes perseverance and determination to find the right place for our loved ones. And we have to do this search while we are sick and tired ourselves. It is not an easy task.
One of the things I struggle with, still, is the guilt. Could I have not held out a little longer? Could I have not subsumed my life for awhile longer? Could I have not provided that warm, safe, loving, family home awhile longer for my mom? Well, personally, perhaps I could have. I will say this – the issues that cost me literally thousands of dollars to discover were all from stress, have pretty much resolved themselves. I have twinges and days, but for the most part, I am much better. I am finally getting a full night’s sleep. I am eating without being sick. I am not doubled over in pain. Nor am I hiding in my closet, where I could fall apart without an audience. And I actually went somewhere last night, to a group gathering I used to enjoy regularly. And it was so nice to not have to hurry home from worry over mom being out too late, or me not being home to put her to bed.
We had this wonderful tradition develop while she lived with us. Each night, I would lay out her pjs and fresh Depends. Then I would leave her to get dressed. Some nights were ugly because she did not want to change her Depends. She would even hide her clean Depends because changing them was beyond her. Other nights, she was compliant and dressed and got herself ready for bed. I would then help her into bed, making sure her electric blanket was plugged in and her bed was nice and toasty. She would climb into bed and hug my neck for all she was worth. She would tell me over and over how much she loved me and how thankful she was that she lived with me. She told me more than once that I was her best friend, and that I was, in fact, her whole life. In the 18 months she lived with us, we only missed one night of that routine. It was a night when she told me she hated living with me, she wanted to go home, and she wanted her things – her keys, her car, her furniture, her home – back again. And she wanted nothing to do with me. She was angry. Really, really angry. And I cried as I got into bed, realizing we could not continue like this. Because the bad moments were far out-numbering the good ones. My mom did not know where she was, what day it was, and often, even who I was. And so, after prayerful consideration, and full consultation with our entire family, we opted to place my mom in an Assisted Living facility.
I get daily texts from the Assisted Living home. Mom is adjusting and her days are happy. She bathed when asked. She is having 3 meals a day. She is chatting her days away with a couple of the other ladies who live there. She is finding joy in being on her own. And I am beginning to find me, again. I have no idea what I am supposed to be doing these days. I have lived caring for someone for the past 34 years. And now I have no one who needs me. Even though my mom does not live with me, there are still decisions I have to make. Things I have to put into place. Ways I am playing God with her life. And it weighs heavily. The day-to-day of it is gone. But the responsibility is still there. Not as heavy in some ways, but more profound in others. This caregiving role is so nuanced and profound. We struggle to do it to the best that is in us. It manifests itself in many different ways. Each family is unique, each interpersonal relationship is unique. This disease creates and destroys relationships, and the health of those with it, and who are involved with it. Sometimes all we can do in a day is just breathe…