I was anticipating it was only a matter of time until I would have to be more physically involved in Andy's care. And just last week, I noticed that he probably didn't wash his hair, and there were also several days he forgot to shave, or if he shaved, there were areas on his beard that he missed. Earlier this week, after he got out of the shower, he came looking for me to tell me he couldn't get the shaving cream out of the container. When I checked, he had squirted it all over the mirror and sink. I told him to hold out his hand and I would do it for him. When I sprayed the shaving cream into his hand, he rubbed his hands together, then proceeded to rub it all over his face, including his eyes. So I had to instruct him to rinse off his face (so he could see), then spray more shaving cream into his hands, but be very careful to tell him to just rub it onto his beard.
One day after I brought him home from The Tender, I was doing something in the kitchen when I heard the water running in the tub. When I checked, Andy was in the tub. Fortunately, he had taken all his clothes off! When I asked him why he was taking a bath in the middle of the day, he mumbled something about feeling grungy. (I don't think he had washed his hair that morning.) So I encouraged him to get his hair wet, then I poured some shampoo into his hands. He rubbed his hands together, then proceeded to wash his face. It was a good thing the shampoo was Baby Shampoo. After instructing him to rinse off his face, I gave him more shampoo, and he promptly rubbed it all over his face again. At that point, I realized I needed to wash his hair for him. Success at last!
He is no longer able to communicate logically or so that I can understand. Even several weeks ago, if he started a sentence, I could pretty much guess what he was trying to say or what he needed. But now, he is mumbling or if he does say words that I understand, they make no sense.
Even though I know this is a progressive disease, it is still shocking when there are such obvious disconnects. I was pretty upset last Sunday after helping him get ready for the day. Someone came to stay with him while I went to church. So, the first person who asked me how I was doing, ended up needing to comfort me as tears started streaming out of my eyes. She was a dear, God had her there for me. She hugged me, listened to me and prayed for me...God's angel ministering to me.
After church, another friend asked me how I was doing. And again, I couldn't help the tears coming to the surface. She listened and loved me. She understands to an extent what it feels like to be a "virtual widow." Her husband has been bedridden on a ventilator for 11 years, with round the clock nursing care. She really wanted to help me out in some way. I mentioned that the weekends were so long because I had him home all day long, whereas during the week, I get a break when he is at The Tender. As I was talking to her, her daughter, Jill, was listening and chimed in that she would be glad to come over to sit with Andy any time I need a break. She is a nurse! That was awfully sweet of her, but I wasn't sure if she was serious. And my personality doesn't like to ask for help. I know - that's a problem I have.
So imagine my surprise and joy when a couple of days ago, Pastor R emailed me to say that Jill had told him to let me know she wanted to help to give me a break and I should call her. Ok, so now I knew she was serious. I obediently (!) texted her and we agreed on a time for me to go get a pedicure for myself on Saturday afternoon...Another of God's angels ministering to me.
I was really somewhat surprised that my cold, as bad as I felt last Sunday afternoon, didn't develop into anything more. Even with getting only 4 hours of sleep Sunday night/Monday morning, I felt pretty good on Monday.
After I dropped Andy off at The Tender, as I was driving to work, I was telling the Lord that I just didn't know how long I could keep doing this. I was exhausted, I felt ill equipped and unqualified to "nurse" Andy. But then I was reminded that whenever I feel so low, that's when God just pours out his blessings to show that he is taking care of me. So I thanked Him in advance for the way he was going to encourage me in the coming week. And did He ever!
On Monday, two friends (more of God's angels) called/texted to tell me they were bringing me dinner. They both brought enough for four meals this week. Then on Tuesday, I received a card in the mail from another of God's angels, with encouraging words and a gift card to Shop Rite for $100.
On Thursday, while I was working, I needed to find someone in the lobby of the church. As I was walking around out there, another friend asked me how I was doing. When I explained, she mentioned that there was a young man who might be available to help with Andy's care in the mornings. I asked a couple of people who knew him what they thought, and they all agreed that he would be really good. So I called him and talked to him, and he was eager to come over 4 mornings a week to supervise his bath and get Andy ready in the mornings. He came over Saturday morning for me to give him instructions, and he did an excellent job. I was so excited after he left because I was able to get my exercising done as well as my own shower without interrupting myself myriads of times to check on Andy. He is a 20 year old young man, tall and strong, taking a semester off in his pastoral studies (just for us - thank you, Jesus!) and happy for some extra money. And believe me, I am happy to pay him for his service...another of God's angels ministering to me. An extra special detail about this young man is that the year Andy coached a team of teen boys in our church's soccer league, this guy was on Andy's team. I am very pleased with his help. He is gentle, kind and seems happy to be able to help.
There were several nights this week that were quite a challenge. One of those was last Sunday night after I had spent the whole afternoon blowing my nose because of a constant drip. I had taken NyQuil before I went to bed, but after only 4 hours of sleep, I was awakened by Andy wandering around the bedroom. After helping Andy get to the bathroom, I was unable to get back to sleep. I felt pretty lousy most of the day because of the "hangover" from the NyQuil, but my morning cup of coffee helped perk me up. And I was surprised that my cold wasn't getting any worse. In fact, I wondered if I had imagined I was getting sick! Isn't God good!
I knew I needed to get Andy an electric razor so he wouldn't need to use shaving cream any more. I had that on my list for a day or two but just didn't have an opportunity to go get it. Then "out of the blue," someone texted me to ask me if I needed anything at the store. I didn't need any groceries, but I texted back that I needed an electric razor. (This is an example that I CAN ask for help!) He went and bought it and brought it to me - another of God's angels ministering to me.
Andy was not feeling well at all on Friday and I got several calls from The Tender to wonder if I should call the doctor to tell him what was going on. I took their advice and the doctor suggested cutting back on the meds that he had increased about a month ago. Andy was feeling so bad on Friday that when I went to pick him up, he needed three of us to help him walk to the car. He was so weak, dizzy and unsteady on his feet. I did stop the one med, and he seemed better yesterday, as well as today.
I am amazed how Andy twitches and jerks while he sleeps. Sometimes his tremors are so bad, it feels like I'm in a vibrating bed. I don't know how he manages to sleep through all that. But that's probably why he has a bad night every once a while. Lying awake, one night, I counted how long his tremors lasted. Sometimes, his tremors last 30 seconds, then there's a lull of a minute or two, then he starts shaking again. But they are intermittent and unpredictable.
Yesterday, I was able to get out to treat myself to a pedicure. One of God's angels came to stay with Andy while I was gone. It's so relaxing to me to have someone pamper my feet. The chair I was sitting in also had a vibrator for my back. What luxury! Maybe if I pretend I'm getting a pedicure in the middle of the night while Andy is twitching, I'll be able to relax. I'll have to try that strategy.
The weather has been so beautiful in the last couple of days. It's hard to feel too low when the colors are so lovely.
And I just can't help myself when it comes to taking pictures of the beauty berries. I have so many pictures of them since I take several every year. The birds will be well fed this winter.
I'm not generally a spontaneous person, but yesterday afternoon, we took a quick trip over to see Dawn and her family. We stayed long enough to get our love tanks filled up by the beautiful children and chatting a little with Dawn and Tommy. It's good to be spontaneous once in a while.
One of the songs we sang this morning in church, Come to the Altar, had a phrase that said:
Bear your cross as you wait for the crown
Tell the world of the treasure you've found
I hope that everyone who reads this blog and everyone I meet along this journey, sees this in me. I hope for the crown some day, when all these difficulties will be behind me. I also want to continue to tell the world of the Treasure I've found in Jesus: His sufficiency, His strength in my weakness, His wisdom for sorting out all the decisions I need to make, His grace, His love, His mercy, His understanding and compassion, His care in all the details of what we're going through - what precious gifts He gives to His children. The greatest gift of all is His willingness to go to the cross to bear my sins and to clothe me in His righteousness.
On one of my sleepless nights, I was consumed with worry about my finances (even though I have been told I don't need to worry). I was tossing and turning, but finally, I cried out to Jesus: "Dear Jesus, please ask your Holy Spirit to pray for me because I can't. Calm my fears." And within seconds I was fast asleep.
Psalm 127:2b: "For He gives to His beloved sleep." (English Standard Version)
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