Friday, January 29, 2010

They Got It Right!

All week we have been warned about severe weather that would be here by Friday (today). The forecasters said it enought that I called the cancer clinic Tuesday and moved my infusion from today to yesterday. That proved to be a good move. While I was there the nurses were busily trying to get other Friday patients in on Thursday and to reschedule appointments with the doctor from Memphis who should have been there today. Sure enough, it has been snowing steadily since early morning and the streets have been icy. Now, the forecast is that the ice/snow won't begin to thaw until Monday. Needless to say, I couldn't get to the nursing home and church in Humboldt may not happen on Sunday. Ice is the scary thing as it breaks trees and power lines. Last year just northwest of here there were disastrous ice storms, causing much damage. I remember one Christmas in Jackson, MS when the water plant froze and dinner for us was hot dogs, cooked in the living room fireplace and eaten on paper plates. I don't remember whether we ate the real deal later or not.

Tom's mental health improved after I finally got his medicine changed back to the usual dose. I believe the home asked for an increase in dosage because he sometimes is restless and won't stay still or where he is suppose to be. Is not heavy sedation the same as restraint? It is in my book! Eating and drinking are still problematic. He doesn't like the food and getting to his water isn't always easy. One of the therapists has gotten him a peanut butter and jelly sandwich and an ice cream cup a couple of days and he has eaten that when served. I am trying finish up the arrangements of bringing him home, hopefully by this time next week. I need to hire at least one more sitter and rearrange some things in the house. I hope his medical condition will allow a safe transition back home with me.

Baby Colin and his mom are doing fine--great, in fact! Big brother Christopher is learning to share his mom, but probably was happier with Colin tucked away inside, instead of visible for all the world to see.

I was so saddened this week to learn of Audrey Huseman's passing. She and her husband, Ken, had the most loving relationship and he has been her faithful caregiver through thick and thin. Even before this most recent illness and before I met her in 1999, she had survived cancer and another serious illness. I believe she lived to care for Ken when he needed her and to share her love of Jesus with anyone she could. We had some good times together at Women's Retreats, going out to eat and the times Tom and I spent with them before we moved to California, just to name a few. She needed no theological degree, no special training, just her sweet presence to share her love for Jesus. There is no doubt that she is smiling now as she has met him face to face. I will miss her.

God loves you and so do I!

Pastor Margaret

Monday, January 25, 2010

What a Difference a Day Makes!

Change number one is the most exciting and memorable! Grandchild #8, son of Marty and Kevin Long was born yesterday morning at 5:23. He weighed 8 lbs. 14 oz. and was 21 1/2 inches long. Mother and baby are doing fine and were at home about 12 hours after they left for the birthing center. Oh yes, his name is Colin Henry Long--the Henry being the middle name of his great granddad, his grand dad and his uncle.

The other change includes the frustration and my taking charge. If you know me, you know I am not an aggressive person, but I do have opinions and have learned to take charge when people I love are involved. There are some other times I take charge, but are not pertinent to these comments.

Let me share our days back at the nursing home. Since Tom returned there last Monday, his condition has gone down hill. Even though I do understand the whys and wherefores of their rules and appreciate the care he is receiving there, I am a bit frustrated. When he checked out of the hospital, Tom was walking practically unassisted, and doing well in that department. When he returned to the nursing home, he was back to monitors to keep him in bed or the wheelchair. There aren't enough helpers to help him walk, I cannot be there all the time, nor am I strong enough to balance him and that is frustrating. A medication change was made and he began to be lethargic, have low blood pressure consistency and sleep a lot. I checked on the medication and what I read confirmed my suspicions--too much medication. This morning I called the nursing home and requested they withhold the noon dose until I could consult with the doctor. They agreed to do that much. Neither two calls I made, nor one from the nurse to the doctor's office have had results. What a frustration!! I'll have to call the facility again in the morning and make the same request before I go to plan B.

The pluses of today's changes are two: 1. Cutting back the medication has made visible changes in Tom--wasn't as sleepy; was responsive; seemed stronger; and his talking made more sense. 2. Dellora brought someone for me to interview as an addition helper at home. She is quite acceptable and comes with lots of experience, her latest job being with a couple, both of whom have Alzheimer's and one of them had also had a stroke. She's ready to start when Tom is dis-charged.

It wasn't easy, but I finally was able to release Tom to God yesterday. How well I remember visiting in a Trauma ICU w/ the family of a man who had been hit by a car! There was no medical hope for the man and his wife at by his bed, begging him to hold on and to try to make it. She kept saying over and over,"I can't live without you." The fact of the matter is that had he lived, he would have been nonfuctioning. One of the nurses spoke up and told the wife that she had to release him, to give him permission to relax and let go. The wife finally did that and the man died as peacefully as he could. When my mother's time came, one of the nurses in the facility where she was said virtually the same to me: give your mother permission to let go and reassure her that you will be fine. She knew about my cancer and Tom's Parkinson's and believed we needed her to help take care of us, even though she was 97 and had been mostly bedridden for three or four years. I remember that she asked me if I was sure and then said, "Okay." She died three days later. I'm not ready to say goodbye to Tom, but I have truly put him in God's hands. I have quit telling God how to fix things. After all God knows best!

Pastor Margaret

Thursday, January 21, 2010

The first steps have been taken to set up help for Tom when he comes home. Dellora and I came up with a schedule the other day and we will interview a person tomorrow--if Tommy is available. We are all anxious to get Tom home, thinking that being in his own surroundings will help him, but he can't come until the help is in place. I had hoped everything would be ready by this weekend, but the doctor hasn't given us discharge orders and they probably couldn't be ready at least until Monday.

It is difficult to understand what he says and he has a hard time following simple instructions. His body is willing and he has the strength to do most of what it takes to get up from a sitting position, but he has trouble getting his legs to do what he hears in his brain. There is a real disconnect in that area. The frustration that I feel sometimes tends to make me impatient with him. He is the love of my life, yet you might doubt it if you witnessed my impatience.

I learned today when I went to a group occupational therapy session that there is some virus going around the nursing home. The therapists kept going around the room with sanitizer for hands and one told me that I needed to careful and not stay too long. That, too, is frustrating. I don't want to have to wonder about my own condition--general fatigue and tired legs are enough!

We trust God to hold us in his strong right hand and that he will go before us in this journey. Trusting and believing relieve the frustration and help as decisions are made.

Pastor Margaret

Monday, January 18, 2010

If I can keep my eyes open and my focus in tact I'll update you. Tom was declared ready to leave the hospital and ineligible to move to the hospital's therapy floor. Whoever evaluated him did not think he was strong enough to endure the regimen. That meant a move back to the nursing home at least until I can get things set up here for him. I arrived at the hospital about 9 this morning and waited throughout the day for first one, and then another, to come tell us where to step next. Finally we got away about 5:30 this afternoon--fortunately earlier than his initial admission. We ate a hamburger together and I came home. I don't mind telling you that I'm a little beat. You know you are tired when you can go to sleep on a two seater sofa with your head resting on a towel on a narrow, hard armrest.

Tom's strength has improved. When I got there this morning he was walking around the halls with the therapist--no walker, just the strap the therapist uses to steady him if needed. Unfor-
tunately, his confusion has increased and there are times it's difficult to know how to repond to him. I get impatient when he locks his mind around something and I can't make him understand. Last night I thought I was going to have to spend the night because he was set on coming home. About 8:30 he awoke from a nap and said that I needed to quit doing what I was doing. I aksed what he meant and he said I needed to come home and rest. I left in a hurry so he wouldn't change his mind.

Please pray with me that arrangements can be made quickly so that he can once again change his residence.

Pastor Margaret

Friday, January 15, 2010

Tonight brings two reports and while there are still unknowns, I believe the reports are good. Tom's blood pressure has improved, his color is better, the fluids have really helped and there is no sign of pneumonia. The hospitalist came by tonight and said that medically he is ready to be discharged. Now we are waiting on a physician to evaluate Tom to see if he meets the criteria to receive therapy in the hospital and don't know if the weekend interferes with that process. He does not want to return to the nursing home and I don't want to move him back and forth.

I know of some older adult ministries who include in their outreach advocating for people in nursing homes who have no one else to speak up on their behalf. That is so important to have a person check to see if medications are distributed correctly and in a timely fashion--especially when timing matters. Patients need to be offered water or other fluids throughout the day so they will not become dehydrated. For a time Tom could only have thickened liquids, was not allowed to get up unassisted, but the liquids were across the room. There are privacy issues, but there are ways to work on those. As group advocacy, we need to impress upon the administration that doctors get a schedule for meds to meet the needs of the patient, not for the convenience of staff and there is a great need to keep hospitals from discharging older patients to a facility other than home late in the afternoon or night. They often can't the medication needed that late and there is a tendency for older folks and/or those who have cognitive impairment or illnesses such as Parkinson's affected by stress to be confused. (sorry for the complicated sentence) If anyone out there knows how to start an advocacy group that would address any of these issues let me hear from you.

Mine is the other report. A friend took me to Corinth for labs, to see the doctor and for a treatment today. My CA125 taken two weeks ago has gone down 3.5 points and it is now below 20. My current doctor wants it under 35, but Dr. Scudder at UCD wanted it under 20--glad to know both would approve. Next treatment date is in two weeks and I expect everything to be just fine.

I had opportunity today in the infusion room to share what I believe to two different people--one of the oncology nurses and another patient who sat by me for a few minutes. God is in charge and His grace is sufficient. The nurse agreed wholeheartedly; don't know about the other person, but at least I was able to tell her about hope and the Hope.

Thanks for keeping up!
Pastor Margaret

Wednesday, January 13, 2010

Here's what's happening now. We had a good visit with the neurologist yesterday, though he did answer questions in the complete manner I would have liked. It was obvious that one of his continuing concerns is the loss of weight. He asked if we had considered in-house therapy where Tom would have remained in the hospital and received his PT there. I said, "Yes, we did, but was told by the social worker that Tom didn't qualify and that was the end of that." The doctor wanted the primary care doctor to see Tom, made an appointment for him to be seen this morning and another appointment for him to evaluated by a doctor who would tell us whether of not Tom qualifies to receive his therapy in the hospital.

Dellora, my precious friend and helper came again today to help me get to the medical clinic. When Tom's blood pressure was taken both numbers were under 100. He was admitted to the hospital immediately so he could get fluids and be monitored more closely. He is on a heart monitor and his caloric intake is being recorded--not sure how that is done. I'm also not sure how long he'll be there and we're back to wondering if he'll recover enough to come home. He has not been resting/sleeping well at the nursing home, so the hospital will be an improvement.

I've learned not to project what tomorrow will be like and to be prepared for anything. We have done our share of wilderness wanderings, but I know about those wanderings that we never wander alone, nor does making it through the wilderness depend on us, but on God's faithfulness. He never leaves us to figure things out; He never leaves us without exactly the provision we need for that step. Maybe you know that song whose lyrics say: "I do not know what the future holds, but I know Who holds the future." That first impressed me in the early eighties with my first bout with cancer and recite it to myself more and more often these days.

I close with two "funnies"--at least they were to me. Tom's nursing home roommate asked Tom when we went to meet him before Tom changed rooms, if he was a Bible reader. Tom replied that he was. One day I was sitting in the room, Tom was napping and the man asked me if I read the Bible. With a very straight face, I replied, "Sometimes." Only later did I tell him that I am a minister. (I'm not sure the denomiation of his choice approves.) Then today when the nurse was asking a gazillion questions, she asked if a minister would be visiting Tom, I said: "Everyday." A little laughter never hurts even when you're laughing at yourself.

Pastor Margaregt

Saturday, January 09, 2010

Sadness is my companion, but it is not in charge! The fear has lessened--what I feared is becoming reality. It is sad to observe illness of any kind in the person you love and to whom you are commited. Today I sat with Tom as he talked to me about things he either only imagined, or he had dreamed, but I thought to myself, "At least he is not in pain." That's a good thing.

Yesterday was a pretty good day with conversations that made sense and not much agitation on Tom's part. I was able to get him an appointment next week to see the neurologist and that's a good thing. I'm a bit concerned with what he might tell me.

There is a certain sadness that we have not been able to do the things we dreamed and planned to do in our retirement. We're even sad we are retired! We never made it to Scotland; Tom never got to show me Munich where he lived almost three years on active duty; we cannot resume our treks to Starkeville to basketball games; we have been limited by illness and treatment.

But there are good things--part of our family around the corner and another part a phone call away. We had family who came for a few days the early part of the week, friends from Mississippi who come regularly, friends who have come from California and others who keep up with the modern technology we have. We have a wonderful church family in Humboldt who are really supportive and friends in the church in town who support us as well.

Today I was chosen to take Jacob to audition for All-West Tennessee Middle School Band. He's in seventh grade, has been playing alto sax about a year and a half and plays extremely well for his age. His mom, dad and I tried to encourage him with stories of our band years and competitions. (Of course, their memories are a bit fresher than mine.) Our stories may not have helped him much, but we sure did have fun talking about them. We'll know by tomorrow how he did in the auditions.

Thursday and Friday nights I spent with Tommy, Liz and children. I went over Thursday to watch the NCAA Football Championship and didn't want to come home late or in the extreme cold. The children were excited I was spending the night--funny how little things excite children. It was so much fun to be with them that I went back last night. Honestly, I was glad not to be by myself. When I told Tom, he thought it was a good thing. It was also a good thing for the SEC to bring home another championship, though I thought we'd choke cheering: "Roll Tide."

Even on Tom's worse days he knows me and tells me that he loves me. He doesn't have to tell me; I can feel it when I hold his hand and I can see it in his eyes. He looks like an old man--much like his Dad did when he died at 93. He looks weak and is very thin--down to 120 pounds. I won't remember him this way. I will remember the strong, handsome, competent, caring man I know and love. That comes from the inside and cannot be taken away--a good thing indeed.

Have a good day of worship tomorrow. God alone is worthy of our praise.

Pastor Margaret

Wednesday, January 06, 2010

The sadness and fear are still with me. However, there have been several encouraging things to happen in the past 24 hours. After I posted last night I went to bed and read from Magnificent Prayer the words for the day. The editor/compiler of the book, Nick Harrison, quotes A.T. Pierson who said: All practical power over sin . . . depends on maintaining closet communion. Those who abide in the secret place with God show themselves mighty to conquer evil, and strong to work and to war for God. They are seers who read His secrets; they know His will; they are the meek whom He guides in Judgment and teaches His way. They are His prophets who speak for Him to others, and even forecast things to come. They watch the signs of the times and descern His tokens and read His signal.

Harrison commments and says: This definition of a pray-er finds many of us falling short. We possess little power because we pray so little. The power we possess as Christians will be in proportion to our communion with God. Weak Christians are often weak because they don't spend time with the source of strength.

Today, cast all your weakness on Him. Claim His strength as your own. He who lives in you can face anything on today's agenda. Watch, and He will guide you with His eye.

Reading that was what I needed! I went to sleep with a picture of Jesus with Tom in His arms and with me being held in God's hands. It made today easier, keeping that thought that Christ could/would face whatever there was in my day's agenda--but still there is sadness and fear. I learned upon arriving at the nursing home that Tom had been awake a good bit of the night and that he wandered and looked for me. They have all kinds of monitors to alert the staff when he gets up as they don't want him getting up without assistance. He has been resistant to that instruction! Today when I was helping him to the sink to wash his hands he began to sway and fall toward me. Fortunately we had someone visiting who could push the call button for help.

He continues to be confused, a problem I believe would get better if he were home with me. The flip side is he's not strong enough to come home and I have a growing fear that he will not regain enough strength to do so.

Two encouraging things were observed. I went to PT with him and watched him really try to do the things they asked of him. Shortly after his workout, a friend brought Meredith (four years old) to see him. What a sweet smile spread across his face when he saw her. It was the most alert I saw him all day. Her visit and her hugs will be the best medicine of the day.

Schools are closed for tomorrow because of a predicted winter storm. That may mean that it will be difficult for me to get to the nursing home. Tommy was here when I got home from church tonight. He had wrapped our faucets and closed up a door that goes under the house. I know I will be glad he did!

Stay warm.
Pastor Margaret

Tuesday, January 05, 2010

Sadness and fear have overtaken my emotions today. My family who has been here since Sunday said goodbye tonight because they leave for Memphis early in the morning to fly home. Julia and I have been close since we were little girls and I love her like a sister. Her husband is not in the best of health, her mother is almost 91 and in a retirement home, but she left them to come see about me. Her youngest brother and his wife came too--if fact, he made all the arrangements for the trip. The minute they arrived at the nursing home, I relaxed. The power of their presence has helped so much! We were able to enjoy some good family time with Tommy, Liz and children and thought we might have to pack Meredith up and send them home with my cousin Snookie. I hated to say goodbye to them!!

Tom moved to a new room this morning in order to accommodate a husband and wife couple who wanted to share a room. He agreed to move because he knew how we would want the same consideration. He has a nice man for a roommate and I think they will get along well. This was another "tired day" for him and he slept a good bit of the afternoon after coming from therapy. He looks so weak and just plain sick. I'm afraid he'll never leave where he is. One day he was pushing, trying to do his out patient therapy so he'd improve his strength, we were looking forward to Christmas with grandchildren, and the next day he is a very sick man. I never know what to expect when I arrive at the nursing home. This morning he was a little testy with me for a few minutes because he didn't think I had been there in two days and he had been looking for me. I am sad to be alone again, sad about losing Tom and fearful that it could be soon.

Our weather is bitterly cold and snow is predicted after midnight tomorrow and through Thursday. We begin Wednesday suppers and program at 1st Presbyterian, Humboldt this week and I'm beginning officer training. I'm hoping any precipitation will hold off until we finish up tomorrow night and I'm home. If the streets and roads are bad Thursday and Friday, I may get in some extra sleep. That could help put a different perspective on both my sadness and my fear.

Pastor Margaret