Thoughts from Dave about a crazy week!
Sunday, April 14, was Palm/Passion Sunday, the beginning of Holy week. A very important time for Christians. Harriet’s sleep schedule was messed up again and she was up most of the night. She didn’t make it to Palm Sunday Worship service. I cannot remember the last time she missed such an important Sunday. I know she wanted to go, maybe that’s what was keeping her awake, the fear that she wouldn’t get up in time for church. It became a self-fulfilling prophecy.
I’ve read how a person with Dementia will often feel exhausted because the brain is working so hard to keep up. If you’ve ever had trouble with your eyes you will understand. When your eyes are sore, or injured, it signals the entire body to slow down. That is, when your eyes hurt, you don’t have a lot of energy and feel tired all the time. In the same way when your brain is injured it will struggle to keep up. This will make the entire body feel exhausted.
This happened on Thursday to Harriet. We were going to go out to dinner, do a little shopping, and then on to church for the Maundy Thursday Service. We went to a nice mom & pop restaurant on the east side of town and then I dropped Harriet off at Kohls, while I went on to Walmart. I picked up the food we needed from Walmart and returned to get Harriet at Kohls. Sadly, she had a very frustrating shopping trip. Some dresses she had seen on a prior shopping trip were all sold out. She really wanted a new dress for Easter but was frustrated because either, they didn’t have her size or the dress she went there to buy was gone. She paid for the things that she did find and came out to the car. After settling in she said, “I know you wanted to go to church tonight, but would you mind if I don’t go. I’m so tired I don’t feel like I can do it.” We went straight home from Kohls, I dropped her off and went back to church by myself.
Before the Dementia I would have said something like, “Come on to church with me. I know you’re tired, but you’ll enjoy it.” I would have talked her into going and she probably would have had a good time. However, with dementia everything is changed. Sometimes I must remind myself that she is literally not the woman she used to be. FTD is destroying her brain and that changes her personality, abilities, and saps the energy from her. Teepa Snow says, “Agree, don’t argue. Do what they can do, never say “you can’t” and “Ask, never demand.” Therefore, I didn’t say, “You Can’t miss church!” I just took her home and didn’t argue the point. She needs to know that she can trust that if she needs to return to a safe place, I will take her.
I could have argued, as I might have in the past, “What will people think about me always going into church by myself? I don’t want to go alone, what if I don’t find someone to sit with? Come on Harriet, once you get there, you’ll be fine. And if you need to, you can sit in the pew and rest for the entire service.” Can you hear the whine in that conversation? If I had said those things she might have answered, “Would you like some cheese with that whine?” Look at how many times the words me and I appear. When they’re not in the sentence the I/me is behind every argument. As a care giver, It’s not about me. The task before me really is a call to death to self. I can only do this by daily, and sometimes, many times a day, surrendering myself to the service of the Lord.
The Gospel reading for Maundy Thursday spoke to me about taking care of Harriet. It came from the thirteenth chapter of John, where Jesus is washing the feet of the apostles. The story continues, “When he had washed their feet, and taken his garments, and resumed his place, he said to them, “Do you know what I have done to you? You call me Teacher and Lord; and you are right, for so I am. If I then, your Lord and Teacher, have washed your feet, you also ought to wash one another’s feet. For I have given you an example, that you also should do as I have done to you. Truly, truly, I say to you, a servant is not greater than his master; nor is he who is sent greater than he who sent him. If you know these things, blessed are you if you do them.” Washing feet was not a job that most people would care to do. In Jesus’ day it was a job for the lowest servant or child to do. Yet, Jesus promises blessings to those who voluntarily become foot washers. In many ways, being a caregiver is a foot washing job.
Sadly, for many, it becomes worse than a foot washing job. How many times have people in the various support groups wrote about the first time their LO makes a mess in the bathroom? Poop is on the loved one’s clothes, body, in their hair, on the floor, wall, toilet, counter top and sink. What a mess! It’s bad enough when you have to change their messy depends but when it looks like they lost the poop throwing contest, well, that’s a bit much to take. But, there’s the mess, and you are the only one in the house capable of cleaning it up. Jesus, where’s the blessing you spoke of? (I think the blessing is becoming more and more like Jesus, who said, “I came to serve, not to be served.)
I am happy to report that we are not there yet. It’s probably just a matter of time. As Harriet’s brain continues to atrophy, she will lose more and more abilities, including the ability to go to the bathroom by herself. For me, the gospel calls me to be a foot washing, (and any other part of the body that needs it) caregiver.
Do you remember, a few months ago, when I wrote about the Teepa Snow teaching concerning getting rid of stress. She talked about how damaging stress was to you because it causes a high level of cortisol, a hormone that is supposed to be used for the fight or flight reaction. This hormone was never meant to be in your system except for those times when you needed a boost to get out of a dangerous situation. Her solution was to take Three deep cleaning breaths three times a day. If you remember the article you might recall that I said,” I’m going to start doing that every day.’
If the road to hell is paved with good intentions, I must be on the expressway. I intended to take Teepa’s advice and do the deep breathing, but other than, one or two days, it hasn’t happened. Well, Monday was a day I call Meltdown Monday. I was on my way to the 8:00 Monday morning Mass and was praying as I drove. I started to pray for those people I was upset with, forgiving then, asking God to forgive their sins, bless and keep them. I started praying for a certain couple and it was like the damn broke. I started crying like my child had just died. After I returned home from church, I was speaking to Harriet about something and broke down again. Then the news about the Notre Dame Cathedral fire came across the television screen. Once again, I was weeping and wailing, this time over the loss of such a work of art.
I am not normally, a man who weeps, wails, and cries over every little thing. Which is why I can tell that my stress level must be very high. Therefore, I think I will get off the highway to hell and keep this intention to destress myself. Want to join me? Breath in slowly, through your nose, filling your lungs to capacity. Hold it for just a bit. (If you feel dizzy or pass out you’ve held it a bit too long.) Now breath out through your mouth. Repeat two more times. My plan is to do the deep, cleansing breaths, 1.when I first wake up, 2. just after breakfast, 3. at lunch, 4. before dinner, and 5. just before going to bed. I will throw in a few extra ones if I feel stressful, or angry.
Finally, I did go to my first meeting with my therapist. It was a good start. She is easy to talk to and seems quite knowledgeable about Dementia, which will help. I will speak more about the therapy next week.
God bless and keep you.
Thank you for your prayer support and for reading this blog. I hope something I said helps you in your journey through dementia.
Love you guys,
Dave
Thoughts from Harriet:
Just a quick note to apologize, I said that I would finish the book, What if it’s not Alzheimer’s, and have a book report today. What Dave said about the road to hell, must apply to me as well. For some reason, I didn’t get any further in the book, so, I don’t have anything to report on. Nor do I feel up to writing a general Journal report. Please forgive me. I will have that book report sometime in the future.
Love, joy, and peace be with, and in, you
Harriet
A Caregiver's Journal 