Thursday, December 30, 2010

A Peaceful Day

Yesterday was difficult for Dad, but today was better. Mom said that it was quiet. The aides allowed him to remain on his back more, instead of turning him as much as they had been (because of his pressure sore). Minimizing movement helps keep him comfortable.

Dad did not talk much today, but Mom said he seemed content for her to be there with him. (When he is tired or in pain, he sometimes asks her to leave--which is hard for her.) His feeding tube is still working, and he even wore his hearing aid for a little while! :-)

Tuesday, December 28, 2010

Dad fairly comfortable today

Mom and I are thanking God that Dad's feeding tube was able to be cleared last night, and that he remained fairly comfortable today with his pain meds.

Also, at the Care Plan meeting this morning, Dad's professional caregivers, Mom, and I were all in agreement about the matters that were discussed. Thanks for praying!

Monday, December 27, 2010

Dad resting with pain meds

Dad's abdominal discomfort became unbearable today. The charge nurse contacted the staff physician to get a prescription for pain medication, but was told he would take care of it tomorrow--his office was closing early due to the snowstorm! So the nurse suggested that my mom call the doctor herself--a departure from Ledgeview's usual policy. My mom spoke to someone in the doctor's office and PLEADED that it not be left until tomorrow!!

The doctor did not call her back, but thankfully, he DID call in a prescription. Dad received both a shot of morphine for immediate relief, and also a "pain patch" that delivers a narcotic through the skin. The patch is supposed to be effective for up to 72 hours. So Dad was able to rest some this evening.

His feeding tube has another blockage, after only a week. When they tried to clear it this afternoon, it was hurting him, so they gave up the attempt until he got his new medications. The nurse was planning to try again tonight, which is likely to wake him up. :-( But if they can't clear it, that means a trip to the hospital in the morning to replace it. We are really hoping that won't be necessary, because the transfers and ride over bumpy roads would be really rough for him at this point.

Mom and I have a bi-monthly Care Plan meeting scheduled tomorrow morning with Dad's care team. (I'll participate via phone.) We would really appreciate your prayers for wisdom as we all seek to do what is best for Dad.

Sunday, December 26, 2010

Difficult Days

This Christmas season has been poignant for us. We realize it is likely the last one that we celebrate with my Dad on this earth.

Dad received some special gifts on Christmas Eve from our dear friends the Melvins. They brought him a throw with a kitty design on it, and shirts they had printed with his train photographs. So thoughtful!!

Dad did not want to open any gifts on Christmas, so Mom waited until today to bring him the others, hoping that he might be feeling better. But he wasn't, so she opened and showed them to him. A few of them got a positive response. :-)

Dad's abdominal discomfort and nausea have increased significantly in the last several days, and his stomach is no longer draining freely. He is starting to express his pain more often. Mom tries to enter his room wearing a smile. She says that occasionally he will give her a small smile in return, but not often. We are praying for comfort, courage and strength for them both.

Lois has tickets to come with baby Daniel from Ecuador January 14-28. We are praying that Dad will be able to visit with her, but also that he will not suffer long. We trust God's timing for his Homegoing to be perfect.

Thursday, December 16, 2010

Good news (we hope)

Thanks for continuing to pray for my parents. Dad has been "up and down." Some days he stays in bed all day, but other days he gets up and walks--one day he even walked to the apartment, sat down in a KITCHEN CHAIR and visited for a half-hour! That's the first time he has sat in a "normal" chair in 2 1/2 months.

On Monday, Dec. 13 Dad received his new hearing aid, which he is happy about. Monday was also ANOTHER trip to the hospital with a blocked feeding tube. The tubes are supposed to last a year, but his has needed changing six times since September, when his care team has been unable to clear the blockages. (Several blockages have been able to be cleared.) They don't know why it becomes clogged so frequently.

Mom got good news this morning. The nursing home administrator told her that if she applies for Maine Medicaid right away, it will probably begin covering Dad's care immediately when his Medicare runs out on Dec. 25! This would allow her to keep more of their savings than we had previously thought--which would be a blessing.

So now Mom is torn between wanting to work on mailing Christmas cards, and hunting for documents needed for the Medicaid application. I told her to focus on the application, because everyone will still love her if they get a card from her in January! :-)

Sunday, December 5, 2010

HOLDING

Good news--at my dad's monthly weigh-in, he is HOLDING at 145, about the same as last month!

The last couple of days have been difficult though, because they are keeping Dad's drainage tube closed longer, so his stomach can HOLD his medicine long enough to absorb it. He quickly becomes very uncomfortable with it closed. Mom is planning to talk with the charge nurse tomorrow about whether the benefits of the medication are worth the discomfort.

Lois & baby Daniel's plans for a visit are on HOLD at the moment. They have both been ill with a serious cough. Lois also has Carpal Tunnel Syndrome in her wrists. I believe she is planning to seek medical treatment for that when she comes to the States.

We are thankful that God is HOLDING us in His hand!

"If I take the wings of the morning,
And dwell in the uttermost parts of the sea,
Even there Your hand shall lead me,
And Your right hand shall hold me."
Psalm 139:9-10

Wednesday, December 1, 2010

Comfortable and Contented

Dad has been doing really well for the past week or so! He seems comfortable and contented, which is a great answer to prayer, for his sake as well as Mom's.

Mom chose to spend Thanksgiving day with Dad, declining other invitations because she said this might be the last one she will have with him. Ledgeview delivered a nice dinner for both of them to his room, and he was able to eat half a piece of lemon meringue pie!! That is the only solid food he's eaten since his surgery.

We were able to connect with Mom via Skype on Thanksgiving Day. As we talked, she could see us in Florida on her computer screen, and we could see her. Technology is so wonderful for long-distance families!! She asked Dad if he felt up to visiting their apartment so he could see us on the computer too, but he was too tired. :-(

However, Dad has been able to walk a bit. Yesterday he walked to their apartment (about 40 feet) and stayed for 45 minutes! He did get a ride back in the chair and went straight to bed afterward though. :-) He sleeps much of the time.

Lois is still working through governmental red tape in Ecuador to bring baby Daniel for a visit. It looks like it may be right after Christmas.

Monday, November 22, 2010

Hoping to Hear

Dad & Mom rode in the wheelchair van to the "hearing aid doctor" today and ordered a new hearing aid for Dad. Mom said he was surprised by how much it cost. :-) (Mom wasn't.) It should be here in 2-3 weeks. We pray that it will work well for Dad and enable him to participate more fully in conversations with those who come to visit him. If so, then it is well worth the cost.

Thursday, November 18, 2010

Dad walked by himself today!!

Dad continues to do quite well! Mom said that when he needed to get to the bathroom today, and the nurse did not respond to his call quickly enough, he decided to get there on his own--and he made it, using his walker!!

He did have help getting back to bed, and also for another walk in the hall. He sat up for awhile today too. And they have made an appt. for him to see an audiologist on Monday, to get a hearing aid to replace the one that got broken in October.

Sadly, his eating has not improved. He still can't eat solid food, and is having trouble swallowing even the nutritional shakes. So although he is stronger, there doesn't seem to be any prospect of removing the feeding tube--which would be necessary for him to go home.

The biggest blessing right now is that Dad is in good spirits for the most part. That is an answer to prayer, because we want him to be happy and content. Also, it makes the situation so much easier on Mom!!

Thursday, November 11, 2010

Re-energized

Mom reports that Dad was up walking in the hall today!!!! First time in a couple of weeks. Aunt Becky, Mom's sister, was in the same facility after a hospitalization, and she went home today. So Dad asked when it would be his turn to go home.

Mom told him she wasn't sure, and reminded him of the feeding tube. But he seemed motivated by the thought, because he also drank his entire 4-oz. nutritional shake at lunch!! I think that's the first time he's done that.

Mom's sinus inflammation has also improved. The x-rays showed no infection. So she plans to keep taking her new medicine and pray it continues to work!

Overall, it was a good day. Mom sounded amazed as she told me, "See, good things DO still happen!!"

Tuesday, November 9, 2010

An eventful weekend

Sorry I haven't checked in for a few days. Our son Evan (9) broke his arm last Friday; fell off a swing at the school playground. So he and I spent the weekend in the hospital. He had orthopedic surgery at Arnold Palmer Hospital for Children in Orlando on Saturday, and came home Sunday evening. He's now on the couch, with arm elevated, being waited on hand & foot.

We hope he'll feel like doing some schoolwork tomorrow. We go back on Thursday to get his cast put on, and maybe he can go to school on Friday.

We are so thankful that Grandma & Grandpa Corbett were here and willing to help with our other two kids so Jack could come to the hospital. And our friends have been great, expressing their concern and bringing treats! :-)

Back in Maine, Mom reports that Dad has been doing fairly well. He's been sitting up some, and visited the apartment for almost an hour yesterday afternoon. However when he got back to his room, his feeding tube was blocked again and he was scheduled to go to the hospital this morning to have it replaced.

Mom's sinuses are still bothering her terribly, with no answer in sight. They were x-rayed yesterday. She also had an eye appt. where she learned she has cataracts, but they have to get worse before they can be removed.

Wednesday, November 3, 2010

Dad needs encouragement

Mom was in tears yesterday. Dad told her he was moving back to the apartment--a misunderstanding. He was going to VISIT the apartment. When Mom reminded him she could not care for him at home, he grew very morose and made some remarks that saddened her. She tried to encourage him with reminders of Heaven, but she blamed herself that he was discouraged.

Dad did get to visit the apartment for awhile yesterday, which made two days in a row that he was sitting up for awhile! Today, however, he stayed in bed all day. His attitude was better, though.

He is asking about getting another hearing aid. His got broken several weeks ago. When he went to bed, it was in its case on the table beside the bed. In the morning, the case and half of the hearing aid were missing and the other half was found on the floor with wires sticking out. Probably an employee knocked it down, stepped on it, tried to cover it up by throwing it away, but overlooked a piece. The nursing home said they would file an insurance claim, but such losses are not usually covered.

Anyway, we had made an appointment for Dad with a hearing aid provider, but then we canceled it when it seemed like it would be too much for him. He hadn't mentioned it, and he can hear voices close to his right ear, so we thought that was sufficient. But since he is asking now, Mom wants to see about a replacement.

We are going to let the house in Gorham go unheated this winter. Last year it stayed heated to 45 degrees or so, but the heating oil just ran out. I didn't think to check the gauge when I was there last week. Our wonderful neighbor, Jim, who has been handling the snow plowing, winterized the pipes so it should be ok to freeze. That will save a lot of money, as the house is not well insulated.

As always, thanks for your friendship and prayers! We appreciate it very much.

Monday, November 1, 2010

More Alert Today :-)

Mom said Dad was awake more today than he has been for several days. He sat up in the chair for over an hour this morning, and when she brought him the newspaper, he looked at the first AND last pages of the front section! When I was visiting, he never did more than glance at the headlines.

Mom brought Josey to visit him this morning too. This afternoon the nurse was planning to bring him to visit the apartment. Mom wasn't sure it would happen though, because Dad was sleeping, and because the nurses were busy with a new patient being admitted.

Overall, it was an encouraging day. :-)

Sunday, October 31, 2010

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.

Thursday, October 28, 2010

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

Monday, October 25, 2010

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

Friday, October 22, 2010

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.

Thursday, October 21, 2010

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.

Saturday, October 16, 2010

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!!

Thursday, October 14, 2010

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??

Tuesday, October 12, 2010

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.

Monday, October 11, 2010

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. :-)

Sunday, October 10, 2010

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.

Saturday, October 9, 2010

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!

Friday, October 8, 2010

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.

Thursday, October 7, 2010

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!

Tuesday, October 5, 2010

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.

Sunday, October 3, 2010

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!

Saturday, October 2, 2010

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!!

Thursday, September 30, 2010

Dr. Visit today

Dad got to see beautiful Maine autumn colored leaves during a ride in a wheelchair van today, to a follow-up appointment with the surgeon who operated on him. The doctor was pleased--he had not been sure Dad would survive this long after the surgery. Dad was encouraged by the visit. He hadn't eaten anything this week until tonight, when he drank several ounces of his nutrition shake for dinner! :-)

It has been an "up-and-down" week for him, with some days stronger than others. He's been sitting up at least an hour on most days, to keep him from getting pneumonia. His therapists are also trying to build up his strength with walking and other exercises for his legs and arms. They had him remove his own shirt yesterday, which he managed, although with great difficulty.

He continues to be fed through the feeding tube. That is going directly into his small intestine, as the stomach continues to heal from the surgery.

On another note, my sister Lois texted me that there was an attempted coup in Ecuador today, and the situation is quite unstable this evening. They are staying indoors, because the police are on strike and it is not safe to be out. So she has asked for prayer for peace.

Thanks!!

Wednesday, September 22, 2010

Pretty Good Day

Dad drank about 4 oz. of a nutritious strawberry shake at lunch today! This is in addition to 75 ml/hr. through his feeding tube.

Dad was sitting in a wheelchair when Mom got there late this morning. (She had a dr. appt. of her own earlier in the day.) Mom is going to see if he could be wheeled to their apt. for a short visit with Josey (their cat). Dad loves Josey, and that prospect would be motivational for him.

Dad has been a little confused; he asked Mom when they would be moving to Ledgeview. Mom explained to him that they were already there, just living in different wings of the building at the moment. He seemed to understand, but she's not sure if he'll remember.

Interestingly, after complaining about the TV that his roommate watches, Dad has been watching it occasionally! Mom said he seemed interested in a cooking show today, and even put his hearing aid in. :-)

There was no problem with nausea today, and the best news is that he was in good spirits! We are so grateful for that.

Tuesday, September 21, 2010

Not feeling so well today

Mom said Dad didn't feel very well today; he was experiencing some nausea. The doctor plans to address it with medication, because they want to maintain his feeding tube volume.

Not much exercise today. Mom says Dad is tired, and "tired of being sick." His temp. and blood pressure were good though.

Still in good spirits on Monday

I'm pleased that Mom has been taking some time to herself. On Sunday she went to church in the morning and "Singspiration" in the evening, and last night she went to the historical society meeting and supper. She needs to do things like that to stay refreshed.

Dad's still receiving all his nutrition through the feeding tube. They have gradually increased the volume he is receiving, and when it has been at a certain level for enough time, they plan to cut it back and encourage him to eat.

He was able to walk to the bathroom and back yesterday with his walker and two aides assisting him. He also sat up for awhile yesterday morning, but stayed in bed all afternoon. Mom says he is "weary," but his attitude is good. That is such an answer to our prayers. My longing for him is to feel God's peace.

Sunday, September 19, 2010

Saturday was rough, Sunday better

Mom shared yesterday that Dad's first full day at Ledgeview was pretty rough. He is having to figure out how to handle some things that are different from when he was in the hospital, and it didn't always go smoothly. Consequently he was quite upset and discouraged yesterday.

HOWEVER . . . today was better!! And his spirits are better. He says he doesn't like the TV that his roommate watches, but Mom says his eyes often follow it. He doesn't care for sports, but there was a show about dogs that he liked.

He is still getting nourishment through his feeding tube and not wanting to eat. Not even a "pumpkin pie" milkshake tempted him today.

However, Mom said his legs seemed a little stronger. That is encouraging!! Thanks to all of you who are caring and praying.

Friday, September 17, 2010

Change of Scenery

Dad was released from the hospital today, and admitted to Ledgeview Nursing Home's Skilled Nursing Facility--Room 204. A few of the needles and tubes were removed, but they left the feeding tube for now. Since he's no longer on IV nutrition, we're hoping he will get hungrier. Today at lunch he had a few sips of root beer. That diet won't be adequate for long. :-)

After arriving at the nursing home, he was transferred to a wheelchair and taken to be weighed. Once he got back to his room, he was exhausted, and they let him stay in bed rather than trying to sit up in the chair. Mom said he had a good long nap this afternoon.

His roommate, Eli (who Aunt Betty knows--he lives near her), likes to watch TV. My parents have never wanted a TV, so dad is thankful that he has a removable hearing aid. :-)

Mom said that Dad's spirits are good! I'm sure the change of scenery is welcome for him.

Thursday, September 16, 2010

Getting out of the hospital tomorrow!

Mom reported this afternoon that Dad seemed stronger on his short walk from bed to chair today. He will be discharged TOMORROW to Ledgeview Nursing Home for skilled care/therapy.

Mom & Dad's apt. at Ledgeview Living Center is in the very same building!! So Mom won't need a ride to visit Dad anymore. :-) He is hoping to see their cat, Josey. So Mom plans to take her to visit Dad as soon as possible. :-) I hope the nursing home staff allows it. Many health care institutions now recognize the benefits of permitting animals to visit, and some even have resident pets.

Thanks so much for your thoughts and prayers as Mom & Dad adjust to another new situation. Please pray for Dad's therapy . . . that he will be willing to work at it, that his therapists will know how far to push him, and that he and Mom will continue to feel God's peace in their hearts.

Wednesday, September 15, 2010

Update from Mom Ames (slightly edited and abridged :-)

Mom e-mailed an update this evening. I don't think she'd mind if I share it:

"Dad's spirits are up tonight after a very difficult day. Dr. Medd (Dad's PCP) came in. He had ordered a CT Scan this morning of Dad's stomach, to see if things are working well. Dad did not feel very well the last couple of days - or this morning. His feeding tube got plugged again. Several nurses tried over and over this morning to get it unplugged.

"The evening nurse came in about 4:30 PM. She got the feeding tube unplugged--after all of those tries by so many nurses before. It was her 3rd try to get it, but she did !!!!! Her name is Jill - and she is a Christian. Really sweet nurse.

"Dr. Medd came in this evening, went to the nurse's station to get the report from the CT scan, and came back to tell us the good news. Everything is working well - and NO SURPRISES APPEARING. (Note: Mom is referring to new cancer growth.) Dr. Medd was very pleased, and wants to have Dad try eating tomorrow--custard, etc.

"After Dr. Medd left, Dad asked me what Dr. Medd said. So I repeated the conversation, and Dad was so glad, and 'Praise the Lord' was his comment. Indeed, we do PRAISE THE LORD that nothing is causing a problem at the present time. That is a great relief to my mind for sure.

"So, it may be that Dad will be moved into the Ledgeview Nursing Home for 'skilled care' after a few more days. I will have news on that as time goes on."

Tuesday, September 14, 2010

Better, still weak

When I called Mom for the afternoon update, she didn't feel that Dad had a very good day; she said his blood pressure was low (80/50) and he was very weak. His walk from the bed to the chair was very difficult, and he only sat up for an hour.

To look on the bright side . . . he WAS able to walk from the bed to the chair (with a lot of help) and he sat up for a whole hour! :-) Gotta be grateful for the blessings. The best one was that he talked to me for a couple of minutes! He hadn't done that since last Friday.

Dad's feeding tube is once again operational for meds and liquid food. He has only had a few sips of water and ice chips by mouth since the feeding tube was replaced yesterday. IV nutrition continues also.

No discharge in sight, yet. We are so grateful for the good care Dad is receiving, with plenty of consideration for Mom's needs as well.



Daddy & his girls, 1976

Monday, September 13, 2010

Relief today

We were glad to find out today that Dad's internal discomfort in the stomach area was due to a blockage in his feeding tube! The surgeon tried several times to dislodge the blockage but was unable to, so he replaced the tube. That procedure was done right in Dad's room; he didn't have to go to an operating room.

Since the tube was replaced, Dad has been feeling much better. :-) We hope that he will feel like eating a little bit of liquid food again tomorrow.

Sunday, September 12, 2010

The Right Time

Mom shared this evening that today Dad was very uncomfortable. His stomach hurts. Of course the incision site is painful, and he has a pillow to press against it when he coughs. But today he had significant internal discomfort also, and did not eat anything all day. He is still getting IV nutrition.

This makes three bad days in a row. So naturally we are increasingly concerned, and alert to the possibility that I/we may need to travel up there fairly soon. A number of arrangements will need to be made when that time comes, particularly for our children's schoolwork, and we desperately need wisdom to know the right time to go. Jack and I have tickets for a trip to Denver CO on Sept. 24-27, that were booked shortly before we learned how ill my dad was. My mom said today that she thinks we can wait until after that trip, but if necessary, we can cancel it and use the flight credits.

It is comforting to know that God has the right time prepared for Dad's departure. Mom said she is comforted by that also. As Dad repeated over and over today, "I'm so uncomfortable," she said she told the Lord that she knew He would do what is best.

Pastor Holliday, our dear friend who has been faithful to visit every few days, reported that while he was there today, whenever Mom or one of the hospital staff did anything for Dad, he said "thank you" every time. That always impressed me about Dad when I was growing up. After every dinner Mom cooked, he would take her hand, smile tenderly at her, and say "thank you, sweetheart."

Friday & Saturday

Friday and Saturday were similar for Dad. He was able to walk a short distance both days, and eat a small amount of liquid food: chicken broth, chocolate drink, and his favorite, vanilla ice cream. A blessing is that he did not experience any nausea.

Friday he sat up more of the time, and talked to me briefly on the phone. Yesterday (Saturday) he stayed in bed all afternoon, and was too tired to talk when I called. Mom also sounded tired yesterday. I have not been able to reach her this afternoon. I'll keep trying and will post again later if there is more news.
"The eternal God is your refuge,
And underneath are the everlasting arms..." Deuteronomy 33:27

Friday, September 10, 2010

Candid words from a caring doctor

Mom called again last night to share that Dr. Medd, Dad's PCP, had told her that the cancer has spread well beyond the surgery site. They did the surgery in hopes of giving Dad some time, and will be giving him therapy for quality of life . . . but they are not recommending any other interventions.

We are grateful for Dr. Medd's honesty, caring and compassion. He did not mention any time frame; he said that he can't predict how the coming weeks and months will go. We are praying that Dad will remain as comfortable as possible, and we are going to be thankful for the blessing of each day God gives us.

"Do not boast about tomorrow,
For you do not know what a day may bring forth." (Proverbs 27:1)



Mom & Dad on their 40th wedding anniversary - May 24, 2009

Thursday, September 9, 2010

More positive progress!

Dad continued to improve today, with TWO walks--one halfway to the door and back, and the other almost to the door and back! He also sat in the chair most of the afternoon, wearing his glasses and reading a little bit of the newspaper. Railroad friends have brought picture books of trains, but he hasn't felt quite up to looking at those yet.

He has been able to drink water today, and even some root beer. However, his intestines still are not showing any sign of activity. :-( That is an important indicator that they are watching for. A pressure sore is also being treated.

Mom was there when the social worker/discharge planner asked Dad's nurse when he might be discharged. She said possibly Tuesday of next week, at the earliest.

Here is a photo of Dad with Danielle . . . several years ago. :-)

Wednesday, September 8, 2010

Getting better

Dad is back in a "regular" room - #140, for anyone who wants to call or visit him. Today he put his hearing aid in (although he didn't want his false teeth or his glasses), and I got to talk to him on the phone for a few minutes! He sounded weak, but quite like himself. It was great. Afterward I heard him tell his nurse that I was Lois, so he was slightly confused, but close enough!

Mom said the nurse thinks they will try having Dad do a little walk tomorrow. The plan for when he leaves the hospital is to return to Ledgeview, but not to their apartment, at least not right away. He'll be receiving rehab therapy for awhile at Ledgeview's Skilled Nursing Facility.

It is possible, and we are hopeful, that he might regain enough strength to go home to their apartment in the Ledgeview Living Center. But if not, he would become a patient in the Long Term Care facility there at Ledgeview . . . what we think of as the "nursing home." This would be a difficult transition, but we are trying to prepare ourselves for that possibility. Mom has worked very hard to care for him in the last year, and it has often been difficult for her.

Again, we are thankful that Mom & Dad are in the Lord's loving hands. Thank you for your thoughts and prayers!!

Tuesday, September 7, 2010

A Good Day!

Mom reports that today was "a good day." It was so nice to hear her say that!! She said that Dad was in fairly good spirits, although he still isn't talking very much (not that he ever does) and didn't feel like having her read to him. His dry humor popped up when the nurse asked how his hands were doing. He said "Well, I can feel them."

He was bathed and shaved today. Mom said, "Wow, sweetheart, they've shined you right up! You must feel like a king!" Dad said, "Nooooo."

He is still in the ICU. There was some talk yesterday about moving him to a regular room today, but it didn't happen, and Mom's not sure what the holdup is. She thinks maybe it's because his blood pressure and heart rate are both quite low, but that is only a guess.

Mom plans to take his glasses and hearing aid when she goes tomorrow, hoping that will encourage him to stay awake a little more. They did get him moved to a chair for a few hours today . . . but he fell asleep in the chair too. :-)

Monday, September 6, 2010

Awake and Talking Today

Mom says that Dad is fairly alert and talking today, although he's taken a number of naps. This afternoon the nurses have gotten him up from the bed to sit in a reclining chair for awhile, despite his protests. It is uncomfortable for him to move, but it is beneficial for both his lungs and his muscles.

Last night Dad had several episodes of irregular heartbeat, but today that seems to be under control. Mom did get home to sleep last night, but she wasn't able to get back as early as she wanted to this morning, so she may sleep on the couch in the ICU waiting room tonight.

Thank you all so much for caring and praying.

Sunday, September 5, 2010

Dad made it through surgery

Mom just called to say that Dad is out of surgery. He is in a lot of pain, so they are giving him something for that. The surgeon told her he removed a large tumor and some surrounding tissue . . . but was not able to get all the cancer. That was not unexpected.

Please pray for the Lord's comfort for them: physical for Dad, and emotional, mental & spiritual for both of them. Thank you so much.

Surgery today

I just spoke with Mom, and she said that an ICU room had become available, and they would be coming soon to take Dad and prepare him for surgery. She said she feels God's sweet peace, for which we are grateful!!

Dad was disobeying orders today. They gave him wet sponges to moisten his mouth but told him not to swallow . . . well he wanted to swallow, and he did. :-) Who would have thought my dad, who never broke the speed limit, would be so rebellious! Mom said the nurse pretended she didn't see anything. :-)

Thank you so much for your thoughts and prayers.

Saturday, September 4, 2010

Surgery tomorrow (again)

Turns out Dad's surgery won't be today after all, because the hospital doesn't have any open ICU beds. Now they are planning to do it tomorrow (Sunday). We don't know the time yet.

Mom is doing well. On the phone she sounds calm and strong, which we know is God's strength as a result of your prayers. THANK YOU !! We would appreciate prayer for wisdom to identify things Mom might need help with, that she might not think of or feel comfortable asking for. And also wisdom to know when I/we should make plans to go to Maine.

"The eternal God is your refuge,
And underneath are the everlasting arms..." (Deuteronomy 33:27)

So it is cancer

We found out this morning that Dad does have a large cancerous tumor in his stomach. The surgeon is planning to remove part of the stomach and intestine, and reconnect everything as best as he can.

They are not sure where the cancer originated or how far it has spread. We will know more after the surgery.

Thanks for praying for all of us.

Friday, September 3, 2010

Surgery tomorrow

Dad's upper GI scope this morning showed that the passage from the stomach to the small intestine is completely blocked. The doctors are not sure if it is a tumor, or scar tissue from ulcers. They did a biopsy and expect the results tomorrow morning.

After the biopsy results are in, they are also planning surgery tomorrow to remove the blockage. (The surgeon told Mom that Dad's doctor used "special charm" to convince them to do the surgery on Saturday. :-) We are happy that Dad consented to surgery.

He still has a productive cough, so his lungs need clearing up also. Thanks for caring and praying!

Thursday, September 2, 2010

Now It's Dad's Turn

After a year of relatively stable health, my Dad (John) has taken a turn for the worse. He began having difficulty eating early in August, and finally it got so bad that he had a CT scan on August 30. The scan showed a blood clot in his lung and swelling in his stomach, and he was immediately hospitalized at Stephens Memorial in Norway ME.

Dad is on a blood thinner now, and an upper GI scope this morning showed that food has not been getting past his stomach for awhile. The reason for the blockage was not visible. They are going to do another scope tomorrow. Since the stomach has now been cleared, we hope the scope will be able to locate the source of the problem.

Another issue is his breathing. He has a bad cough and is on oxygen. Thankfully he is receiving IV nutrition, which should help to build his strength back up. He grew very frail during the last month of not being able to eat much.

It is so hard to be 1,400 miles away while this is going on. Our family and friends in Maine have been great about helping my mom during this time, with rides and making telephone calls. Thank you Aunt Jane, Aunt Betty, Uncle Ted, Debbie, Stephen, Pastor and Mrs. Tiner, and anyone I have missed.

As always, we appreciate your thoughts & prayers!

Tuesday, March 16, 2010

Hanging in there

We are thankful for the Lord's continued care of Mom & Dad. They have adjusted to life at Ledgeview Living Center but still miss their home in Gorham. Thankfully their health is fairly stable, although they both have a long list of ailments. We are grateful for the help of friends and family in providing transportation for frequent doctor visits.

Our family (Jack, Alice & children) are planning a trip north this summer and are looking forward to seeing them--it will have been almost a year.

We pray that their house in Gorham will sell this summer, as the taxes and insurance are a financial burden for them.

Thanks for caring and praying.