Caregiving 101. Part One: The Diagnosis
Dad was sixty-one and I was twenty-nine when we learned he had been diagnosed with early onset Alzheimer’s.
What is Alzheimer’s? Despite my proximity to this disease, I am no expert. If you have more questions about it, I recommend you talk to what specialists we have, but it’s a disease that is confusing, even for the experts. Alzheimer’s affects around six million Americans. More and more have what is known as early onset Alzheimer’s, contracting it before age sixty-five.1
This disease with no cure is a specific type of dementia where the brain cells start to shut down. The cells corrode and the damage spreads until the person dies, their brain unable to tell their body how to function. There are three common stages: early, middle, and late. There could be genetic components to contraction. There could be lifestyle components to contraction. The symptoms, especially with early onset, are usually put down to stress or bad memory, so we know little about how the disease first develops.
I had no clue what I was getting myself into.
My siblings had mostly disowned my dad at this point. I knew if I decided to help him that I would bear the brunt of doing so. At the same time, I had no doubt about choosing that path. He was my dad. It was the right thing to do. My family did rally around me as best they could. There were multiple times when I received help from them beyond my asking. But I had never felt so alone making that decision, taking the weight of his world on my shoulders, and walking forward with my eyes open, but still so blind to the challenges ahead.
Caregiving is like that. Even when you have help, the primary caregiver carries the burden of decisions. Each time you have to decide something, you feel like you’re signing away someone else’s life, no matter how simple the decision.
After I said yes, I became caught up in the details and the tasks that had to be done. I made appointments to talk to all of his doctors, social workers, and therapists. We had a power of attorney drawn up (something I urge you to do as soon as possible).
I wish I had done something else as well, so please learn from my mistakes. While you may have to figure everything out, research, and implement new routines, don’t just do that. Take the time to come to grips with this change in YOUR life. Yes, it is about the person you’re taking care of, but your life is being changed as well. Don’t try to deal with it later. Later just means a new task and new stress, and you will quickly fall behind. The need to process doesn’t fade with time; instead, each aspect becomes a new layer, wrapping tighter and tighter, cutting you off from who you are. When you finally do have the time, you will have so much more work to do. You have got to reflect through and accept this on every level at every stage, starting from day one.
If you aren’t in therapy when you become a caregiver, let that be the first thing you do.
I got to ease into being a caregiver. After the initial rush into responsibility, things slowed down. I called Dad at least once a week, often more, and checked in on him. But it wasn’t necessary for me to be a part of his daily life yet. The drawback was that I still didn’t know what I was getting myself into, and I was lulled into a false sense of security. It was an occasional headache, but not the nightmare I had feared. Then everything happened at once.
Eight months after the initial diagnosis, he became really needy. He called me constantly. He was confused about where to park his car. He got lost easily. He was worried about his bills. He clogged up voicemail with messages and didn’t remember leaving them. He was angry and anxious and emotional.
I went to see him to get put on his bank accounts. (Even though you have power of attorney, become a full joint owner on all bank accounts. You will never regret this.) His house was a mess. Who knew the last time he’d taken his medication. We went out to lunch and he was crying one minute and laughing the next. That was the moment when the role truly became mine. I went home and felt completely inadequate to undertake it.
That was my new, yet normal feeling, because no one knows how to do this job. Even people who train to be caregivers don’t actually know what it will entail. Their training is mainly based on physical knowledge, not the mental and emotional toll the job exacts. The primary reason for this universal inability to prepare is that everyone is unique and every version will be unique to the life of the people experiencing it. No one has ever gone through Alzheimer’s in the exact way that my dad and I did. No one ever will.
The other reason is that this is personal. You’re taking care of someone close to you, someone you’re responsible for on multiple levels. It’s not a 9-5 job where you can clock out and stop thinking about it until the next time you work. On some level, you’re always working, always worrying, always responsible. It’s like being a parent except there’s no hope your charge will grow up and start taking care of themselves. The only way out is death.
It’s likely you’re struggling because you love this person so much; it’s hard to see them like this and know you’re going to lose them. Realize it’s impossible not to take caregiving personally and there’s no way to fully prepare for that. But as you face it, remind yourself this is normal and, even if your situation is unique, your feelings are universal.
How do we, as beginning caregivers, not give in to stress and despair?
We start with the relationship between ourselves and our charge. One of the disadvantages of being so close to and responsible for someone else is that it breeds codependency. This is a word thrown around a lot in our culture and I think it’s often misunderstood. My definition is—it’s basing your own worth and emotional state around someone else’s emotions.
It’s easy to let your mood be swayed by whatever is happening with your charge. It makes total sense since we’re responsible for them, we’re with them a lot, and they can’t do much for themselves. We want to make them happy and take care of them well. But we can’t control their emotions; we can only control our own.
Let me be very clear, I’m not saying not to feel your feelings. But when those feelings start to mirror your charge’s and your motivations are based solely on their needs, you are in trouble. You will spiral out of control and constantly feel frustrated, stressed, and unhappy.
What we want is peace from God.
We mostly think of peace as contentment or lack of conflict, but I think we need to go deeper. It’s true that having it makes you feel contented and helps you negotiate conflict, but peace is less about those things as it is about being a whole, complete person, no matter your circumstances. That person doesn’t need to worry about the irrational lack of filter their charge now has. They don’t base their self-worth on how well their charge is doing.
Philippians 4:7 in the NIV says “And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
Doesn’t that sound amazing? The Greek word here is eirene (i-ray’-nay),2 which can mean quietness or rest, to set at one again. I love the action emphasis of setting at one again. When we get wrapped up in the needs of our charge, we need a reset.
Thayer’s Greek Lexicon shows that this verse translates the word “according to a conception distinctly peculiar to Christianity, the tranquil state of a soul assured of its salvation through Christ, and so fearing nothing from God and content with its earthly lot, of whatsoever sort that is.” 2
What we need then is a peace that is only attainable through salvation in Jesus Christ. When we have that, nothing on this earth can make us afraid. What a powerful notion! Fear is a binding emotion and it loves to attach itself to caregivers. I was scared of many things when I made the decision to take care of my dad, even though I was a Christian and had accepted that peace already!
But there’s something else we need to look at with this verse. It starts with the word and, so we need what came before it in order to receive this peace.
Philippians 4:4-6 says “Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.”
Based on these verses, there are three things we need to do before we have this resetting peace.
Rejoice! When you’re walking into a hard season, don’t forget there is joy in life. I’m not saying that will be easy. The verse talks about rejoicing in the Lord. Our circumstances may not bring us joy, but knowledge of our salvation in Christ and trusting in the Lord to provide, can bring a deep, quiet joy that is not going to change, regardless of where we are. It’s so important Paul says it twice in the same sentence. Be deliberately joyful. It will take intentionality and practice, but it is the first step toward that peace.
Be gentle. We can get effortlessly riled up by our emotions and lash out with what we’re feeling, but we need self-control, not just with our charge, but with everyone. It says to be gentle and it says the Lord is near. It’s easy to be impatient or feel angry, alone in this responsibility, but don’t forget that God is right there. The next time you’re tempted to react in anger, picture God standing right next to you, closer than your breath. He’s your check on your emotions and the gentler to your reactions. Again, feel your feelings, but remember that they don’t have to control you. A more tender approach is going to spread that peace to others, including your charge.
Petition God. God functions 24/7 as our Caregiver. Unlike us, He can handle that. He’s there to help us with our requests, with our worries and anxieties. He wants us, with gratitude, to present everything to Him. We will feel anxious, but we don’t have to stay that way. When we get wrapped up in a pattern of worry, it quickly pulls us down. When we fret, we cut ourself off from solutions. But the answer Paul presents is prayer. Be grateful and ask God for what you need. He’s always listening, always so close! And, as you take care of someone else, He’s there to take care of you. You have a built-in support system. When we let go of the anxiety and give it to God, we make room for peace in our lives.
Peace is important because it is the antidote to codependency. Codependency says that my self-worth is based on making this other person happy. Peace says that because I have self-worth, I am able to make others happy. The order is vital. Don’t become a caregiver just because it’s the right thing to do. Become a peacemaker, using that God-given peace. When we do that, we are better able to take control of our emotions and keep them separate from our task. I promise, you will be more suited to do the work.
Most of the time when we begin something new in our lives, we get the opportunity to train and prepare for it. That’s not always the case with caregiving, so it’s all the more important to begin shoring yourself up at the beginning. You are about to undergo a marathon, so build your endurance. Prepare yourself. Don’t solely put out fires; stop them from happening.
As you begin your journey of caregiving by making this hard decision, take the time to process carefully, and be deliberate about putting the above practices into a daily routine. Do this before you are lost in the responsibilities and cares. Your battle might be waged on the physical plane, but the war is won in your spirit.
If you’re making the decision to be a caregiver, I applaud you. I see you and I see your burden. You are undertaking something immense and weighty and I want you to know that you may feel alone, but you aren’t. There are people all over this world who have felt that same weight and cried those same tears. Whenever you feel alone, stop, take a deep breath, and feel the support of that brotherhood of caregivers, and the Father who is the ultimate Caregiver.
