Caregiving 101. Part Two: Changes
As you begin to live the caregiving life, you will notice changes: behavioral, mental, emotional, and physical. Handling these changes will be a big part of your life. A caregiver watches someone transform before their eyes. It is incredibly painful, seeing the person you know disappear. But whether the changes are subtle or sudden, they are inevitable.
My father was not an easy person to love. I’ve heard stories about people with Alzheimer’s flipping personalities, becoming sweet when they hadn’t been. But for my dad, his worse qualities were magnified until they were all I could see. One of my biggest struggles our first year was not knowing if he couldn’t help how he was acting or if he was doing it on purpose.
My dad was an expert emotional manipulator. When I was a child, after events in which he behaved badly, he would come into my room crying and tell me what an awful father he was. I would feel guilty for being upset and end up comforting him. When I helped him as an adult, he could switch between yelling at me for ruining his life to crying profusely in gratitude for my help in seconds, and it was a roller coaster ride for me. It could have been emotional manipulation at the beginning, but I chose not to see it that way or accept it as that. I chose to see it as a cry for help, which helped me keep going with my immense task.
There were many times when he needed something and asked for it. When I explained that I couldn’t drop everything I was doing—like my job—to immediately come take care of it, he’d talk about how ‘my things were more important than his.’ When it came time to move him, I was ‘putting him in jail’ and ‘his opinion didn’t matter.’ He’d make comments about shooting him or running him over with the car because he wasn’t important enough to me.
I do understand that my father faced a terrible situation, and I wouldn’t want to go through it myself. Alzheimer’s is not a kind disease to those it infects, and I hate that he had it. But I was triggered almost daily by his words and actions. They reminded me of my childhood, watching my entire family tiptoe around his moods, trying not to set him off. Alzheimer’s gave him new material and excuses. It was difficult for me to distinguish between the man who had raised me and the man who was suffering.
During this time, I watched the movie Mr. Holmes, starring Ian McKellan as an aging Sherlock Holmes, dealing with dementia.1 It’s a powerful movie, but it may be as hard for you to watch as it was for me. I hated comparing my dad’s way of handling his disease to Holmes’ way. Holmes, though he struggled, took it with grace and maturity. My dad used it to make everyone around him as miserable as he was.
I’ve often wondered how I would handle such a diagnosis and I don’t know. I’d like to think I’d make everything as easy as possible for the people around me and apologize in advance for anything I might do or say. But I can’t say for sure. People need space to get used to the idea, to the changes in their routines, and to the loss of independence. Losing the ability to drive was a big deal to my dad, a UPS driver for many years. It was a point of pride for him and felt like a death.
As caregivers, our job is to handle their transitions with grace and practicality. There are so many things to consider. Are they safe? What will help them emotionally? Physically? Mentally? Spiritually? Though I was overwhelmed, I went into crisis mode and took care of each practical need as it presented itself. Yet trying to balance him emotionally felt like feeding a vampire—impossible on top of everything else. I didn’t do a perfect job of taking care of my dad’s emotional needs. It was a lot easier to handle the logistics. The emotional side was triggering and painful for me and I didn’t have enough energy to do it. I still tried.
I hope you’re not doing this alone. Please don’t try to take care of everything yourself. It’s too much for one person. Caregivers need to communicate with each other who is going to take care of what. Maybe one of you is better at physical, practical matters and the other is better at mental/emotional support. Check in with each other often and be honest about what you need. It might be time to switch or something could be offloaded to a third party. Whatever your situation, don’t try to do it all alone. I realize that may be impossible for some people, but I promise that there are resources and help available, so don’t give up.
I soon stopped wondering if my dad was doing things on purpose. It became obvious he was not. That was easier for me, because I could stop wrestling with the hurt I still felt from my childhood. Instead, I got to know a new person, someone who really needed my help. Someone who, while never very agreeable, couldn’t possibly be held responsible for the previous man’s sins.
Remember that no matter what changes you see, you can’t take it personally. Have grace for yourself in this. Some days will be easier than others. Regardless of how you feel about your charge, they’re a person, they need help, and they should be treated with dignity and respect. It’s hard because it’s not normal. We’re used to holding people culpable for their behavior and we’re not used to someone we love acting like they hate us. It’s confusing to watch. Physically, they may be fine, like there’s no reason for them to be acting out. But just as they might be in denial about their disease, we caregivers might be in denial about their behavior, and have to accept that this is the new normal.
Some of the behaviors may seem childish or even funny. When we drove anywhere, my dad pointed to literally everything we saw and talked about how he used to work there as a teenager, or he and his dad built that barn, or he was pastor of that church. None of these things were true, but they certainly seemed true to him. The oddest thing he did was hoard silverware. He stole it from the dining area because he thought it belonged to his mother. He hid it in a sock, then put that sock inside another sock and so on. Trying to unravel them and get the forks back was a nightmare. Multiple times, I sheepishly returned silverware to the dining room.
There are phases to these changes as well. Looking back, I can divide my dad’s behavior into periods, but it’s hard to do in the middle of it. The physical changes are just as hard to spot. It took months, but it felt like one minute he was always fully shaved and the next he didn’t remember how. Each change was actually a marker, pulling me further from the man who hurt me and closer to the man who needed me. After one extremely tense conversation with him, I realized—in a twisted way—my dad and I were the only two who could understand what we were going through. I was closer to him than anyone else. It was a freeing moment for me, because I needed to release my feelings of anger in order to care for him. I also needed to keep my boundaries in place and not get dragged into his pain rather than feeling mine.
I offer this caution, because codependency can look an awful lot like closeness, need, and shared trauma. In the moment, reveling that someone else knows your pain and is in it with you feels nice, but it’s ultimately a trap. It will spiral both of you into unhealthy bonding and you will not be able to distinguish your feelings from your charge’s. I had to acknowledge that and figure out the difference between reconciling with my father and becoming trapped in the past.
What’s our pathway to peace while dealing with these changes? My answer is forgiveness. I was taking care of someone who had hurt me deeply. In order to be able to care for him, I needed to forgive him. At the beginning I had no concept of this; I was doing it out of duty. Forgiveness came slowly, especially with the way he continued to treat me. It was a blessing when it became obvious that he was no longer the same person because it was easier for me to let go of the pain and focus on the person he was becoming.
Forgiveness is a decision and a choice, but the healing is a process and, honestly, I’m not done yet. When he passed away, I was sad, but I was grateful we’d had the opportunity to reconcile. I have since discovered there are still parts of my heart that need to heal. But they’ll never start until I choose to forgive.
Even if you don’t have a broken relationship, forgiveness and the need for healing is still important. Your charge may not be able to help what’s happening to them, but they have changed the way they behave toward you and you are losing them. Abandonment might be the biggest issue you face as you watch them fade. It may not be logical to blame them, but you probably still will, even unconsciously. It’s possible to be angry at God, at ourselves, at the doctors, and at our charge, all at the same time. Letting anger and resentment fester is going to make the situation worse; those feelings will continue to grow.
Starting now—continuing every day—is the best way to avoid dealing with years of pain later. Make the choice to deliberately forgive, even in advance, anything your charge may say or do to hurt you. Start your healing now and then continue throughout the caregiving time. You need to make that choice deliberately, as the hardest part of any action is the choice. Execution is almost easy compared to the mental and emotional anguish that goes into the decision.
While you can, love and experience the person you know, but don’t bring blame and don’t let bitterness rule you. They truly will not be able to help their behavior. You’re the only person in the situation with full agency. So use it to make your life and their life better. You will get hurt, so acknowledge and feel those feelings. Don’t stuff them inside like they don’t matter. That’s how you develop codependency and that’s how you build resentment. Your feelings do matter. And I think your charge will acknowledge that while they can. Treasure those moments and accept their apologies and tears stemming from their true feelings. Store that up inside to use on the days when they don’t or can’t apologize.
Forgiveness might seem impossible. What helped me was remembering how God forgave me. His forgiveness for us is a powerful motivator. When I didn’t think I could do it anymore, that was my comfort and my strength. Recently, I listened to a sermon on Jonah, and the preacher said something that struck me. He said that God made the plant for Jonah because He is a caring God, not because Jonah is fun to care for.2 I think such a mindset would have been so helpful—especially at the beginning—when taking care of my dad.
Some of my family told me that I shouldn’t take on this burden because my father had never done anything for me. My response was that because Christ died for me when I didn’t deserve it, I would offer redemption to everyone else even when they didn’t deserve it. That’s my duty as a Christian and the example I’m called to follow. That is how I live out my beliefs. It needed to be done wisely and safely, but showing love was my response to being shown love by God. It built my confidence in my ability and I took it as my mission statement while riding the waves of caregiving.
I’m so sorry you’re losing the person you’re caring for. I’m so sorry that those wonderful memories and personality traits are slipping away. It is horrible. It’s a long, slow grieving, and every day brings a new death to face. You are a brave and compassionate person to choose this life and to accept this inevitability. I pray you know exactly why you have agreed to do this, and embrace the forgiveness we all need to give, no matter how badly we’ve been hurt.
1 Condon, Bill, director. Mr. Holmes. Miramax Films, 2015.
