Chaos reigns supreme. It is Monday! A true Monday. Mom is lost…so lost. This weekend was full of a new thing – hallucinations. And they were doozies! And they are continuing on into today….
On Saturday, Mom asked me where her husband, Frank had gone. I explained that he had passed away more than 5 years ago, and that she had only been home with me. Her reply was, “Well if he wasn’t here, then I have had the most real, awake, dream of my life. So if it was not Frank, who has been with me all day?” Yeah; again, just me. She even went on to see people at tables or chairs in our back yard. She saw animals running across our yard. She wondered what was on the menu at the restaurant downstairs and told me I could call down to the desk and they would tell me. (She lives with us, in our one-story home). She told me I could grab a chair from the public room to bring into her apartment while she did her housework (again, she has a bedroom in our home). She was, again, looking for her apartment door key. And rifling through her clothes drawers, insisting things were missing from when she had moved into this apartment years ago. She did not want to leave her magazines out by the couch, because the others would take them. On and on and on I could go, giving examples of the progression of this horrible disease.
“Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice. Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.” (Ephesians 4: 31-32)
Some days this forgiveness thing is as easy as breathing. Some days, old habits are revisited and my heart is aching from the pain of it. My husband spoke so gently to me yesterday. I was so fraught with despair and sadness at the progression we are seeing, so rapidly, in my mom’s brain and body. I went to him as he was mowing the yard (we have an acre of mostly grass, so it takes a long time) and he gladly stopped to talk to me. I ended up leaning against his chest and he held me while I cried. And he said something that resonated with me. For him, when mom is acting all weird or in her own reality more and more, he just shrugs his shoulders and thinks, “Oh well. What are you going to do? She thinks it, so it is it for her. Let it go.” And I so need to do that. I need to just forgive her sharp tongue and mean comments, and let it go. I need to work on letting the crap, the dross, the extra all go. I need to focus on being more tenderhearted. Sigh. So hard some days.
“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. …” (Matthew 6: 25-34)
One of the hardest things with being a sole caregiver to a loved one with Alzheimer’s, is to not worry. I worry all day long. Concerned she is safe, happy, fed, dry and clean, amused or occupied. The list is endless. And I never had this concern just parenting my children. This is a completely different ball game. I never worried overmuch about daily challenges in raising kids. You just did what needed to be done, guiding them as you went. Each day was different, but certainly not a life or death experience. With mom losing so much every day, I worry this could be her last day. Will it have been a pleasurable day? Will she have known she was loved? Or was I angry and frustrated? Was mom flustered because my attitude created tensions? Was I making her last day a good day? Every day. Every day.
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” (James 1: 2-4)
I know that God is so not done with me, yet. I know each day is an opportunity to grow in my faith, lived out in caring for my mom. Each day the Lord gives me the crown again, allowing me to revel in being the daughter of the King of Heaven and Earth. And I forget I am not really the “sole caregiver” of my mom. I have my husband and children supporting me. I have an amazing team around me in the Alzheimer’s community. My mom’s doctor is so incredible. And we will all walk with her, as this disease continues to darken her shine, and damper her light. God is with me, with her, with us. And it is a sort of pridefulness to think I could do this all alone. This week I am interviewing a woman to come in and be the “personal care assistant” for mom. And I will have another person on this caregiving team. And I need to pull myself out of this depressed funk, wading in all the dark of this disease. So I press forward and hold mom’s hand as we walk this Alzheimer’s disease to its inevitable conclusion. And “on the darkest days, when I feel inadequate, unloved and unworthy, I remember whose daughter I am, and I straighten my crown.” Amen.