To you, O LORD, I lift up my soul; in You I trust, O my God.
Remember, O LORD, your great mercy and love, for they are from of old.
Good and upright is the LORD;
All the ways of the LORD are loving and faithful for those who keep the demands of his covenant.
My eyes are ever on the LORD, for only he will release my feet from the snare.
Turn to me and be gracious to me, for I am lonely and afflicted.
The troubles of my heart have multiplied; free me from my anguish.
Look upon my affliction and my distress and take away all my sins.
Guard my life and rescue me; let me not be put to shame, for I take refuge in you.
May integrity and uprightness protect me, because my hope is in you.
Psalm 25 (selected verses)

The sleeping pill is not working any more as is evidenced by numerous wakings in the night. Last night, as an example, Andy woke up 7 times, each time, needing me to help him get to the bathroom. This involves turning on the light, guiding him the right direction, then giving minute instructions for a simple task. I'm really amazed that I don't feel worse than I do. It's obvious that God is giving me the strength to do the task he has called me to. That reminds me of David's boast in the Lord: "With your help I can advance against a troop; with my God I can scale a wall." (2 Samuel 22:30 & Psalm 18:29)

Yesterday was another beautiful fall day but I'm thinking it might be the last for a while. The temperature was 60 degrees and I just couldn't stay inside, so after walking around our yard, we got in the car and went over to Trotters Crossing - a nearby park in Mt. Laurel.

We walked almost a mile and Andy did well the whole time. He seems to be anxious and restless - a new phase of the disease? He is constantly pacing around the house, moving and not sitting still, even for a movie. It may be a result of his Parkinson's, which may also be why he's not sleeping well. He twitches and jerks all night long. Poor guy.

We also stopped in to see Dawn and her family, although the two youngest kids were napping. They have a lot of leaves to rake up.

Paul Tripp has an email he sends out every Wednesday morning that I get, Wednesday's Word. This week was a good reminder that people with Alzheimer's aren't the only ones who forget.


We all do it, probably every day. It has a much bigger impact than we realize. The scary thing is, we barely recognize that we're doing it.
What is this thing we all tend to do? We forget the generosity of God.
In the busyness and self-centeredness of our lives, we forget how much we have been blessed by grace. The fact that he blesses us when we deserve nothing (except for wrath and punishment) fades from our memories like a song whose lyrics we once knew but now cannot recall.
Every morning, God's generosity greets us in at least a dozen ways, but we barely recognize it as we frenetically prepare for our day. When we lay our exhausted heads down at night, we often fail to look back on the many gifts that dripped from God's hands into our little lives.

I like the way he describes God's gifts as "dripping from His hands." God's Word also depicts God as being lavish in the gifts he gives us and rich in love. And what about Ephesians 3:20 that portrays Christ's love as surpassing knowledge. Verse 20 promises that He is able to do immeasurably more than we can ask or imagine. He is constantly working on our behalf, giving us good gifts because of his great love for us. 

Oh, God, give me eyes to see your goodness and not focus on my circumstances. I want to be consumed with God and His goodness and not this momentary trial. 

I am very thankful for the help I am receiving in the mornings in getting Andy and myself ready for the day. I'm actually surprised at myself that I can adapt to the new way of life in our house (only by God's grace), but what a special blessing to get some relief when someone else can assist. 

I am also very grateful for The Tender, providing me a much needed break from caring for Andy - 5 hours a day/5 days a week. 

This week we celebrate Thanksgiving and we do have a lot to be thankful for, most of all, our blessed Savior, who gave his life that we might have life eternal.

As usual on Sunday night, I'm feeling pretty sad. A weekend of dealing with Andy nearly full time is difficult, and I'm afraid, there are times when I display a less than patient attitude. It didn't help going into the weekend, that The Tender had been closed two days this past week: Tuesday and Friday for Election Day and Veterans' Day. 

I had things planned on both those days that helped but each activity presents its own challenges. On Tuesday, we met Dawn at Johnson's Farm to let her kids play on their playgrounds. There were hardly any other people/kids there so it was easy to watch the kids play and keep track of them. 
 

Isn't he just the sweetest little boy???

The perfect outfit for driving a tractor!

Mamma Dawn

Then on Friday, I worked for a couple hours in the morning but left when I felt it was becoming too much for Andy. After lunch, we took a trip up to Harleysville to help celebrate Claire's birthday. 

That cake was awesomely delicious and rich!

Frilly girly new dress for the birthday girl

I was viewing the trip as a test to see how Andy would do. If he seemed to be ok, then I would go to PA with him on Thanksgiving Day. He didn't seem to be bothered by the driving, but he did unbuckle his seat belt on the way up, and also on the way home. That was quite a challenge for me to get him to buckle back up while driving on the turnpike. Now I'm thinking I need to buy a device to keep him from unbuckling himself, a device they make for special needs kids. 

Thursday night into Friday morning was a night to forget. The sleeping pill Andy takes before bed did not work that night. I could hardly keep him from going to bed right after supper. He kept taking off his shirt and wanting to go to bed. It was a struggle to keep him up, but finally I gave up around 7:00. He got in bed, but as I started reading to him, he got very restless. He tossed and turned, I think he was in pain or his legs hurt. He just couldn't stay still. I felt really bad for him. What could I do??? He finally calmed down around 8:00 but he was in agony for about 45 minutes before that (I think the sleeping pill finally took effect). 

I was pretty tired, too. So I went to sleep around 8:15. Then he woke up at 9:30 to go to the bathroom. I have to get up to help him because he doesn't know where to go. I was able to get right back to sleep. Then he got up again at 10:30 to go to the bathroom again. Again, I was able to get back to sleep. But can you believe it, he got up again at 12:30 for another bathroom run. And I did not sleep the rest of the night. 

I think he slept a little from 12:30 till 3:30 when he became very restless again for the remainder of the night. The one time I just couldn't get out of bed. I thought, whatever happens while he's in the bathroom, I'll deal with it later.

Well, when I finally did get up at 5:00, I went into the bathroom to use the toilet myself and stepped in a puddle! Ugh. So I had to clean the floor and stick my foot in the tub. 

 

Another thing that has developed is his pacing around the house from one room to another. If I ask him what he's looking for, he mumbles or tries to tell me something, but nothing he says any more makes sense. He has also taken to moving things around. I went into the bathroom this morning and found the bathroom rug on top of the toilet lid. Another time, I found a placemat off the table on the living room floor. He likes to take the pillows off the couches and make piles of them or place them in different spots. A week ago, I was impressed that he could still tie his shoes, but that, too has now gone. He spends a lot of time on the job, though, so I let him because it occupies him. I eventually take pity on him and help him, first untying all the knots he's made in the shoestrings. 

 

Earlier today, I gave him a bowl of tapioca pudding. He proceeded to spoon out the tapioca onto a napkin. 

 

These are all hard things to process. It's so frustrating to not be able to understand him. He tries so hard to make himself understood, and he's frustrated, too.

 

Yesterday, the young woman who came over last Saturday to stay with Andy while I got a pedicure, came over again. She stayed with Andy while her mom and I went out to a nearby park for a 4-mile walk/hike. It felt so good to be out in nature with a friend. 

 

 

We had a great conversation empathizing with each other's situation. Her husband has been bedridden for 11 years. I was so impressed and convicted with her contentment in her situation. I keep thinking that I just can't do this much longer. But she expressed a real peace and joy in her life as it is right now. She does have the advantage, though, of having 16 hours a day of professional nursing care for her husband.

 

As always, the reading I am engaged in is a big help in my overall emotional, spiritual state. I read in Andrew Murray's Daily in His Presence on the Nov. 12th reading:  "Preach [to yourself] because you believe it to be the teaching of God's Word and heartily desire it. Preach the truth by faith and the experience will follow." So I was encouraged that this is a good reason for me to continue to blog. It's not only therapeutic to write out my thoughts and feelings, but it's also a way to remind myself of the truths of God's Word that I am experiencing as I travel this journey. 

 

I'm also reading the prayers that are recorded in Valley of Vision. Here are some of the thoughts that were especially meaningful to me this week:

 

"Deliver me from every evil habit, every accretion of former sins, everything that dims the brightness of your grace in me, everything that prevents me from taking delight in You." (page 77)

 

"May my character and not my circumstances chiefly engage me." (page 78)

 

"When I am afraid of evils to come, comfort me by showing me that in myself I am a dying, condemned wretch, but that in Christ I am reconciled, made alive and satisfied; that I am feeble and unable to do any good, but that in him I can do all things, that what I now have in Christ is mine in part, but that shortly I shall have it perfectly in heaven." (page 79)

 

"If my life is to be a crucible amid burning heart, so be it, but will You sit at the furnace mouth to watch that nothing be lost. If I sin willfully, grievously, tormentedly, in grace take away my mourning and give me music; remove my sackcloth and clothe me with beauty; still my sighs and fill my mouth with song, then give me summer weather as a Christian." (page 81) 

That last paragraph reminds me of Psalm 32:7 - "You are my hiding place; you will protect me from trouble and surround me with songs of deliverance."

He hears my sighs and saves my tears in a bottle. His heart is touched by my grief and this is a great comfort.

 

So much has happened in two weeks since I last posted. Andy's disease seems to be progressing rapidly. I can't get over how much he is declining. On the other hand, there is so much to tell about how God is pouring out his love and care on us.

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 got carried away...I know. But can you blame me???

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)

I will not be posting today due to a bad head cold which is preventing me from thinking clearly.

 

"I love the Lord because he heard my voice; He heard my cry for mercy." Psalm 116:1

On Saturday morning, as I was walking on the treadmill, I was also desperately asking the Lord for wisdom. In a lot of ways, it was a good week. An occupational therapist came to the house several times to assess our situation, to give tips on things for Andy to do so that I wouldn't feel like I needed to come up with ideas. That was really good and I was encouraged, although it was quite sad to see how incapable Andy was in accomplishing simple tasks. He doesn't seem to understand that the square goes in the square and the circle goes in the circle, etc. But he works diligently to make it work and doesn't give up. (so typical of him) 

Several things the therapist suggested were actually children's toys which I already had in our grandkids' toy box. But there were some other ideas she had that I ordered and already received.

This one involves screwing nuts and bolts together, as well as matching the colors.

I thought he would really like that hammer and bench, but he's not as interested in that, perhaps because it's noisy and he has to hit pretty hard to make any progress. 
 

 

These toys are inexpensive and they occupied him at great length yesterday morning while I was working at laundry and baking.

The therapist also suggested an adult coloring book. I got one and he tries, even though it's hard for him with his tremors. 

So while it's helpful to have an occupational therapist give ideas and try to help, it is also sad to see him struggle to accomplish tasks that a toddler can do.

On Friday morning, I was part of the care giver support group where Andy goes for his day care. That was hard for me this time. In reality, I don't want to think of Andy progressively getting worse, although I see it constantly. I keep hoping somehow, he'll never have to go to a full-time care facility.

But that was part of the conversation on Friday morning. The leader said pretty forcefully that we need to have a plan in place before we get to the crisis. I see her point. She gave an example of a caregiver who was shopping (an innocent activity), and fell and tripped. She ended up in rehab for 8 weeks with a broken shoulder and kneecap. Fortunately, she did have a plan in place and her daughter was able to get her husband into a facility while she was convalescing. She was very emphatic that the caregiver needs to take care of her/himself because if something happens to her/him, the spouse is "doomed." I see her point. If something happened to me, what would happen to Andy? He can't take care of himself.

Well, I don't mean to be cavalier, but this is not taking into account the sovereignty of God. I don't believe in making decisions based on fear and what if's. And as a case in point, consider this example:

Several weeks ago, I was thinking I needed someone to help me in our morning routine. Someone to hang out with Andy while I shower and get ready myself. But I called around to several home health care agencies and was told there was a required minimum of 3-4 hours. I didn't need that many hours and felt it would be a waste to pay someone for that amount of time. So I really didn't go any further with this idea. I was getting adjusted to keeping close tabs on Andy and it was going "ok."

Then yesterday morning, "out of the blue," a friend called to say she wanted to give us a hour in the morning to help. Wow! I was shocked and overwhelmed. We are going to start with 3 days a week to see how it goes. She is highly qualified, a retired nurse, as well as a dear friend. Her husband is a former biking buddy of Andy's and over the years, we've done fun things together. How kind of the Lord to prompt her to serve in this way. I felt it was a direct answer to my desperation in praying for mercy while on the treadmill earlier. It was also an affirmation that the Lord is working on my behalf. He is not leaving me to my own devices.

This idea of the Lord serving his children is quite an interesting thing to think about. Jesus said that he didn't come to be served, but to serve, (Matthew 20:28 & Mark 10:45). His whole life was an example of service, from his poor birth to his death on the cross. But the amazing thing is that even now, he doesn't stop serving his children. Even in his majesty at the wedding feast in heaven, he will be serving us. This is an amazing picture in Luke 12:37 where Jesus tells his disciples that he will dress himself to serve, will have them (the disciples) recline at the table and he will come and wait on them.
 
I believe he gains great pleasure in serving us. He loves to meet our needs, to provide grace and mercy to help us in our times of trouble. I believe it makes him happy to make us happy.
 
That's why I love Psalm 116.
"I love the Lord, for he heard my voice; he heard my cry for mercy. 
Because he turned his ear to me, I will call on him as long as I live.
The cords of death entangled me, the anguish of the grave came upon me;
I was overcome with trouble and sorrow,
Then I called on the name of the Lord; 'O Lord, save me!'
The Lord is gracious and righteous; our God is full of compassion.
The Lord protects the simplehearted; when I was in great need, he saved me.
Be at rest once more, O my soul, for the Lord has been good to you."     
(verses 1-7) 

It was raining yesterday morning but by afternoon the sun came out, so I ventured outside. It was very chilly, felt quite autumnal. And surprise, surprise...there was a lovely clementis flower bravely blooming as one last gasp before it gets really cold.