Sleeping More

From Mom yesterday:

"This has been a busy day for me: vacuuming living room, dusting a bit, etc. I was trying to get the apartment ready for a larger rolling chair. The nurse thought they could bring Dad over in that recliner chair.
"As it turned out, Dad was not in the mood with enough energy to come out today. So we will try another day."

Mom also shared that there is improvement in both Dad's pressure sore and the inflammation around his feeding tube. That is encouraging, as both of those cause discomfort. While I was there, they gave him a "low-air-loss" mattress, designed to relieve pressure sores.

From Mom this afternoon:

"Dad is wanting to sleep much more. The nurse said that he asked to be allowed to sleep, and not get out of bed so far today. He did not wake up as she rinsed his feeding tube this afternoon. When I have been in to visit twice this afternoon, he has been sleeping.
"The nurse also mentioned that she notices that Dad is slipping. I told her that I was praying that he would not linger. She said maybe he will go in his sleep when the time is come. With Dad's heart still in good shape, it may be that the cancer is after one of his organs. I don't know."

Lois has canceled her speaking engagement for next weekend. We are trusting God to get her here when the time is right.

About the same

Tuesday was a busy day. The aides brought Dad in his wheelchair to visit Mom in the apartment for about 20 minutes! :-) He said he remembered living there. He petted Josey, their cat, and smiled as he watched her play with a string.

Also on Tuesday morning, a notary public came to the nursing home from the town office, and Dad was able to sign some necessary documents. But it was extremely hard and stressful . . . hard for him to hear us explain what the papers were, hard for him to understand, hard to get him and the table positioned properly, hard for him to write because his hand shakes so badly. He was exhausted afterward. Mom and I decided we will not put him through that ordeal again. She has his POA in her purse now, so she can sign things for him.

On Tuesday afternoon, I had to say goodbye. That was difficult. However, the car was fixed in the nick of time. Thank the Lord. I got to spend some time with my sister-in-law Kathie before she took me to the airport. The trip back to Florida went smoothly, and it was good to get back to Jack and our children.

Dad had to go to the hospital yesterday morning because his feeding tube came out again. Once it was reinserted and he got back to the nursing home, he slept most of the day.

Today he has slept a lot also. Mom said he was awake for only two visits, less than 10 minutes each. Once she carried Josey in so he could pet her. The nurses put him on his side because he has a bad pressure sore, but he keeps turning back to sleep on his back. Mom and I are glad when he can sleep, because then he is not suffering.

Lois is trying to get her visa. She has to go to Quito for it, and plans to fly there since it is an 8-hour drive each way. The first available flight is next Friday. She requests prayer that she will be able to get the visa that day.

Thank you for remembering our family and lifting us to God in prayer. We are thankful for God's promise in His Word that we will have eternity together, with the Lord. "For the wages of sin is death, but the gift of God is eternal life through Jesus Christ our Lord." Romans 6:23

An Outing for Dad

Dad bundled up and went out into the chilly air this afternoon, as he had an appointment with Dr. Neilson, the surgeon who did his stomach operation on Sept. 5. Mom and I accompanied him, riding along on the wheelchair van. Dr. Neilson was hoping that his tubes could be removed, but when we explained that A. Dad gets very UNcomfortable whenever the stomach (drainage) tube is clamped, and B. he doesn't want to eat anything and what goes into his stomach seems to be unable to pass to his intestine, he agreed that both tubes should stay to keep Dad comfortable.

Dad enjoyed the opportunity to see some different scenery, and he actually smiled when he saw small children at the doctor's office. "Little ones have a charm all their own, don't they?" he commented. That's as long a speech as he has made all week.

His back started hurting as we waited for the van to return, and he was very uncomfortable on the ride home. He was visibly relieved to get back in bed, and went to sleep immediately.

Dad enjoyed a visit this afternoon with dear friends George and Kathy. They have been such a blessing to our family!!

Mom's sinuses have not improved, so she is hoping that something else can be done to help that situation.

I (Alice) need to travel back to Florida tomorrow evening. There are still a few arrangements to finish in the morning. Mom & I would really appreciate your prayers that we will not forget anything that needs doing! :-) Also, that the car's ignition (which, it turns out, has been recalled) will be fixed in time to return it to Scott & Tracy tomorrow afternoon.

Lois is making plans to come soon. They are trying to get baby Daniel's passport . . . everything takes longer in Ecuador.

"And we know that all things work together for good to those who love God, to those who are the called according to His purpose." Romans 8:28

Good News

Thankfully, after seeing some documentation I found online, Ledgeview has agreed to continue billing Medicare for Dad's remaining 64 days of Skilled Nursing Facility (SNF) coverage!! Praise God. At $182.00 per day, this will save my parents $11,648.00.

Dad visited with us this morning for about 20 minutes before wanting to sleep. He enjoyed seeing pictures of Lois' family in Ecuador that she had e-mailed last night.

Mom & I had several errands to do today. Mom went to the doctor for a cold that has lasted three weeks, and was diagnosed with sinus inflammation.

We did walk down to visit Dad several times later in the day, but he was sleeping each time.

Mom & I enjoyed dinner at a restaurant with Jane & Danny, Betty, and Stephen & Angie tonight! The owner of the restaurant is a Christian, and has built a testimonial rock fireplace that he gives a little speech to customers about if they are interested. He built crosses into it, and phosphorescent rocks that spell "I AM" (one of God's names) under black light. The rocks are from many countries around the world, including one from the Sea of Galilee. It is great.

Decisions Today

I arrived in southern NH and drove to Maine yesterday afternoon, delighted to be in still-beautiful New England in autumn. So thankful for the friends who made it possible for me to come.

When Mom & I hugged it was pretty emotional, but after recovering from that, we went straight down the hall to see Dad. His eyes were closed, but he woke right up and was happy to see us. I gave him a kiss and he rubbed the stubble on his cheek self-consciously. He always liked to be clean-shaven.

After a short visit, he wanted to go back to sleep. Ten minutes is about all he can handle at one time now.

This morning was our meeting with Dad's care team. He was invited to participate, but declined because he can't hear. His hearing aid mysteriously got broken about two weeks ago. Ledgeview is filing a claim with their insurance, but doesn't think it will be covered. :-( They also promised to track down who was on duty that night.

Mom and I got a comprehensive report on Dad's condition. He is declining. Today was his last day of PT and OT, because he has lost so much strength and stamina. The therapy is a major ordeal, which is justifiable IF it is going to result in improved quality of life. But that is not the case with Dad. So, as the OT therapist said, "We're not into torture. Let's let him be comfortable."

Another significant factor is his weight loss. He was admitted to Ledgeview on Sept. 17 at 165. On October 1, he was down to 147, despite receiving full nutrition through the feeding tube.

The big decision before us is how Dad's care should be administered and paid for. His feeding tube qualifies him for Medicare Skilled Nursing Facility (SNF) coverage in the nursing home for 65 more days. We had considered initiating Medicare's Hospice coverage now, hoping it would pay for part of the nursing home care. But we were told today that it would not.

So, we will request that Ledgeview bill Medicare for the remaining 65 days of SNF coverage. After that, Mom will need to pay for it. She could not possibly care for him at home, even with Hospice assistance--it is not comprehensive enough.

Dad has been asking, "When can I go home?" The answer has been "When you get strong enough." But we decided today to tell him honestly that he has cancer (he had been told, but didn't remember) and that it looks like the Lord will be taking him Home soon. He did not respond. I asked what he thought about that, and he said, "I don't know what to think." I tried to encourage him with some thoughts about how wonderful Heaven will be. Please pray for him to have hope and peace.

Mom is doing well. Dad is uncomfortable and unhappy, and she wants him released from his prison. I'm doing pretty well most of the time. Lois is planning to bring baby Daniel (5 months) and come for a short visit sometime in the next few weeks also.

Thank you for thinking of us and praying for us. We very much need God's wisdom and strength! How we praise Him for His goodness that we can always depend on, no matter the storms of life.

A Whirlpool Bath!!

I have to confess that I found Mom's report yesterday slightly amusing, although I'm sure poor Dad didn't. Dad got a whirlpool bath!! Unlike most people, it was traumatic for him. Dad has always taken "scrub baths." Whether this was because of a compulsion to conserve water, or just an aversion to immersion, I don't know. He never went swimming either. But yesterday, he indignantly told Mom, "I was up to my NECK!!!"

When the aides brought Dad his liquid supper last night, they asked him if he wanted to sit up. He said no, but Mom said yes, and he was overruled!! He sat up for about an hour and 40 minutes. :-)

The word back from the charge nurse is that according to the doctor, hospice is an option. However, no decisions will be made until our meeting next Thursday morning with Dad's care team. Please pray for Mom and I to have God's wisdom and clear direction. Thanks so much!!

Charting a Plan

Right now I am so thankful for the Medicare training I received when working as a coordinator with NH's SHIP program!! It is coming in very handy.

Mom and I will meet with the Ledgeview social worker, Brenda, next Thursday, Oct. 21. That is when Dad's physical therapy is scheduled to end, due to his lack of potential for further progress. The PT qualified Dad for Medicare coverage of his SNF nursing home stay, so if he is to remain in the nursing home, we either need another qualifying criterion (such as the feeding tube), or Mom will have to start paying $187.00 per day.

HOWEVER, Dad wants to go home. So it seems that the best option is Medicare's Hospice coverage, which would pay for a hospital bed and all needed caregivers to come into their apartment. It would be nice to have a seamless transition from Medicare SNF to Medicare Hospice, so that Mom wouldn't have to pay out-of-pocket for even one day.

Before hospice can start, Dad's doctor has to certify him as terminally ill. That needs to happen ASAP for him to go home next week, because a hospital bed has to be ordered for the apartment. Ledgeview requests that communication with the doctor go through the charge nurse, so I spoke to the nurse on duty, and she promised to ask the doctor about the certification. We are hoping for an answer from him tomorrow.

Please pray for God to direct Mom and me, and Dad's care team, to the best possible solution for Dad's comfort as well as Mom and Dad's financial situation--and ultimately, for God's glory.

I'll leave you with a bit of medical trivia I learned today. Dad's feeding tube is a jejunostomy tube (J-tube), because it goes into the part of the small intestine called the jejunum. Fascinating, huh??

Hospital Visit Today

Mom still has her cold, so she spent the morning at home. But around 2 pm, a nurse came to tell her that Dad was being taken to the hospital for another blocked feeding tube. They invited her to ride along, cold and all, so she went.

Instead of trying to clear the blockage, the surgeon just replaced the feeding tube. When Mom told him that Dad's liquid diet doesn't seem to be digesting, he ordered a dye test x-ray. It didn't show any internal blockage, which was encouraging. But it doesn't explain why his stomach is not digesting the liquid diet, or why he continues to lose weight.

I'm going up a week from tomorrow! Can't wait to see them. As always, we appreciate your prayers for peace and wisdom.

Another wrinkle

Poor Mom has caught a cold. :-( So she didn't really visit Dad today. He was sleeping when she poked her head into his room this afternoon, so she just wrote him a note that she had a cold and didn't want to give it to anyone.

I suggested that she might ask about trying a short visit tomorrow with a face mask, so he could see her for a little while anyway. Dad isn't big on socializing, but he is much more content when she is in the room, even though they don't talk much. That's how it has been for the last forty years. :-)

Somewhat better day

A bit of relief today. Mom said they opened the drainage tube off and on to relieve Dad's discomfort. I'm glad. I'm sure he was too.

He sat up for about 45 minutes this afternoon before wanting to get back in bed, and they let him. Sounds like it was a quiet, non-eventful day for him. Nice to have those occasionally.

It's Tube Bad

Sorry about the awful pun in the title. (Wait, no I'm not. :-) Mom said today was very difficult for Dad, because the doctor ordered that his drainage tube remain shut off for the whole day, hoping that his stomach will adjust.

The result was severe discomfort and repeated vomiting. Yet, this evening when Mom left, the drainage tube was STILL shut off. Mom and I are hoping that the doctor, who sees the nursing home patients all of once a month, will read the nurses' notes and come to the conclusion that it might be a good idea to leave the drainage tube on, so Dad can be a little more comfortable!!!! I know the doctor means well, but please, if it's not working, let's make some adjustments.

So I guess today's biggest prayer requests are 1. God's hand of comfort for Dad, 2. wisdom for the doctor, and 3. patience for the rest of us!

Gonna be heading North! :-)

Mom was able to get out and about for awhile this morning. Aunt Betty took her to do a few errands, including a bit of early Christmas shopping!! "I had fun," she told me. :-)

She reports that Dad had a "pretty good" day today too, though there is still discomfort in his abdomen. Each day, they close off the drainage tube from his stomach for several hours at a time, to see if his stomach can handle it. So far, it can't. Mom asked the doctor if they planned to take any more "pictures" (x-rays or scans) to see what the cancer is doing, and the doctor said no, because the results would not change the treatment plan.

Dad took two fairly long walks today, and drank 4 oz. of apple juice. Both good things!! He also sat up for five hours this afternoon, which was painful due to his pressure sore. He would like to get back into bed sooner, but sometimes has to wait awhile until the nurses can help him.

Mom carried Josey, their cat, in her arms to visit Dad again. This was the third or fourth such visit, and Josey is now accustomed to it and staying calm and relaxed. :-) That pleases both Mom & Dad. Aunt Betty offered to push Dad in the wheelchair to their apartment for a return visit to Josey, but Dad hasn't felt up to that.

God has provided tickets for me to come up to Maine from Oct. 20-26! Thanks, George and Kathy. God has also provided the use of a car--thanks, Scott and Tracy! I'm always amazed and thankful how He works things out. It will be great to be with Mom & Dad for even a little while.

Helping Mom

Wanted to share with all you faithful friends that are caring and praying, that this has been the most difficult week for Mom since Dad's ordeal began. She was summoned to meet with the facility's social worker to discuss Dad's progress and plans for future care.

One thing Mom learned distressed her greatly. I wish I had told her sooner, because I knew it from my Medicare training. It is this: Medicare will cover Dad's nursing home care for up to 100 days, but ONLY as long as he continues to make progress with his therapy. When his therapists feel he has come as far as is possible, Medicare coverage will cease. Thankfully, that point has not yet been reached. Dad has made good progress in his walking over the past couple of weeks. But whether he will gain enough strength to go home is still very doubtful.

If Dad has to go from "Skilled Nursing" (therapy) to "custodial care" in the nursing home, Mom will start having to pay about $5,000 a month. Their savings will be gone within a year. So the social worker gave Mom a Medicaid application, the size and scope of which was completely overwhelming to her. It also requires financial documentation back to 2008, which will take considerable effort to locate, due to Mom being "organizationally challenged."

So . . . I am planning to go to Maine soon, for about a week, to help Mom. I'm looking at the week of Oct. 17. Would appreciate prayer that God would help me find the cheapest flights! :-) Mom insisted on sending a check for the ticket. She doesn't want to be a burden. But she seems greatly relieved just to know that I'm coming.

There is another possibility that I hope to discuss with Dad's doctor when I am up there. When Dad's Medicare Skilled Nursing coverage ends, if his doctor certifies that he is considered terminally ill with less than six months expected to live, he would qualify for Medicare's Hospice benefit. If so, that would pay for his care. The care must be given at home, because it doesn't cover room and board; but all the caregivers needed to help Mom would be covered.

Quick update on Dad's physical condition: (if you're still reading--this is a long one!) The Ledgeview doctor, who visits the patients once a month, saw Dad today for the first time, and was concerned that the nutritional liquid being delivered through the feeding tube doesn't seem to be moving to the small intestine as it should. A drainage tube is still present (that caused nausea when it was shut off a couple of days ago), and more liquid is still draining than should be.

Another obstacle is that a pressure sore has re-opened, making it very painful for Dad to sit up. He was only able to sit up for an hour at a time today.

So . . . we continue to commit my parents to our heavenly Father and trust Him to work everything out. We appreciate your thoughts, and ask for your prayers for wisdom and guidance and strength!

Tough evening

Dad had a difficult time with nausea this evening. Seems that a drainage tube had been shut off, and as a result, his poor stomach had more than it could handle.

When I spoke to Mom around 7 pm, she was exhausted. One of the nurses told her that when Dad was sitting in his chair, she could wheel him to their apt. to visit Josey. But tonight that sounded like an insurmountable task, that would take more energy than she could summon. So she had gone home to go to bed.

This is one of those times when I wish I were closer. I could push Dad to visit Josey . . . maybe someone else can help do that. And maybe Mom will feel stronger tomorrow.

Another trip to l'hôpital

Dad's feeding tube came completely out of his abdomen yesterday evening, precipitating an ambulance ride about 6 pm. The tube was replaced with a new one with a larger diameter, which the nurses like, because it is less prone to blockage. Dad handled the whole thing quite calmly, according to Mom. :-) She went along with him, and they got back to Ledgeview about 11 pm.

Today he had another good day. He sat up for at least six hours this afternoon! He did tell Mom that his stomach felt "strange" and that it was bothering him, but not painful. So we hope that tomorrow it will be back to "normal"--the new normal!

Two good days!

Friday and Saturday have been good days for Dad. :-) On Friday, he had a trip to the hospital because his feeding tube got blocked, but the doctor was able to correct it. Mom said the doctor was annoyed because he thought the nurses at Ledgeview could have handled it . . . oh well!!!

Dad has been sitting up a LOT more -- 6 to 8 hours total. And he is gaining strength: Friday he walked about 80 feet, and today he got up from his chair and back into bed with only minimal help from the nurses. Thanks for your prayers on his behalf!

He is drinking small portions of his liquid diet. Yesterday he drank about 1/2 of his strawberry shake, and today he had 4 oz. of apple juice. He is still getting 75 ml/day through the tube.

Mom took Josie, their beloved cat, to visit him yesterday. And today he enjoyed a visit from our good friends, Pastor Cleo & Shirley Winningham. Pastor W. was our pastor in Gorham in the 1980's.

Nice to have some good days! Thanks to his caregivers and to the Lord!!