HOW CAN A CAREGIVER COPE?
by
Forest Steenfot

           I came home from work one early October afternoon in 1996 when my wife greeted me very enthusiastically. She took my arm and said, “When you called me ‘honey’ this morning when you were leaving for work, I knew who you were. You are my husband. I did not know who you were Saturday and Sunday. It really had bothered me.” I knew then that this was the beginning of the end for our 43 years of marriage, but it wasn’t. I vowed at our wedding, August 22, 1953 “in sickness and health till death us do part.”

           Days and nights after that experience of God’s grace having her not knowing me became like hell on earth for me. Up until that time I had never been a caregiver. She became agitated, abrasive and demanding especially at night. Her personality had changed from a quiet and a giving person, thinking more of others’ needs than her own, to a demanding person. Her personality became just the opposite of what it was during our long years together.

           During one of the first nights of her personality change, she talked to me most of the night. She kept telling me she didn’t know why I talked her into moving into this senior apartment residence. She wanted me to go to the office tomorrow morning and give them notice that we were moving. This went on all night. When morning came, she had completely forgotten about it to my relief.

           The first doctor that examined my wife came to the conclusion that she was in the advanced stages of Parkinson’s and Alzheimer’s. He told me that she would die anywhere from six months to a year. With this knowledge, I arranged for a gravesite. (See, Appendix 1) That evening, after seeing the doctor, I fully realized what the out come of her illness was going to gravitate to and that it was going to finally end in death. I was on my knees working to play a video. While I was remaining on my knees, she walked over to me and I placed my face into her hands crying like a baby.

           A family member gave me the name and phone number of an agency that could give me advice. The first thing I did was get an durable power of attorney for medical purposes. There were other important matters, which this agency outlined for me. (See, Appendix 2)

           I had to retire from work to stay home with my wife. I discovered that she could not dress herself or cook any longer. She had become more like a child then like an adult. That meant I had to bathe her, wash her teeth, put her clothes on and off, take her to the toilet and even take her out of bed and back into bed again.

           More problems started at night with a wee small voice, “Help me.” I would wake up and ask, “What do you want?” She would reply, “Go to the bathroom.” I would take her and wait to take her back to bed. She could not get back into bed any longer. This was occurring five to seven times each hour. You can imagine how much sleep that I was getting. I would get frustrated and angry with her. I knew that it wasn’t her fault, but I could not help myself. She did not want me to touch her after one of those nights.

           I got a lady to come in and dress her and then she, would place my wife in a wheelchair for a walk. A little later some folks came back to the apartment to get me to come and help my wife. She had spilled over in the wheelchair and hit her head so I took her to emergency room. She began to talk to me while we were waiting for a doctor as if there was no problem. She could not remember what had happened earlier. In one way that was a blessing.

           My wife had many hallucinations during her illness. She would see large bugs coming out of an easy chair, which she believed, really was happening. One evening I was in trouble with one of her hallucinations. I had told security at our apartments about my wife’s condition. She became very mad at me one evening. She said to me, “You are a Christian and you did that very sinful thing.” I did not know what she was talking about.

           Some time went by until I saw she was on the phone. She had called 911 for the police to come and arrest me. I broke in and told the operator that my wife had Alzheimer’s. The operator asked what she should do. I said, “Please don’t send paramedics, but she could send the police.” Our security people came to our apartment when the 911 call went in. I discovered why my wife was so mad at me before security and the police arrived. She believed that she saw me in our living room naked with some naked women. We were having a great time. Later she told me the security and police were covering for me against her.

           The first doctor that examined my wife arranged for her to see a specialist. The specialist gave a written diagnosis of LEWY BODY DEMENTIA, which is very similar to Alzheimer's disease with progressive loss of memory, language, calculation and reasoning as well as other higher mental functions. However, the progress of the illness may be more rapid than seen in Alzheimer's disease. (Appendix 3)

           I became very depressed and I lost my self-esteem as the hours, days and weeks went by. I felt like I was in a prison. I thought God was punishing me for my sins, or for my lack of doing His ministry. God became silent to me. The Bible, Christian books and music closed to me.

           My church became meaningless to me. Oh yes, many said they were sorry. I’ve been in the church over fifty years. I know many loving, dedicated people and Christian leaders who have had a very positive effect on my life. With other folks in my church that are near my age, my peers, independence in retirement is a must. Nothing can interfere with that or with their spacious luxurious homes, immaculate gardens, late model cars, and a second home in the mountains, near lakes and streams, for retirement. I felt that their expressions of sympathy were only surface that is to be politically correct.

           Many of my wife’s lady friends came to visit her at the first. It didn’t last long for she could not communicate with them. She probably didn’t know who they were. It is very difficult for normal people to understand being around those with mental illness. Her illness was not only mental, but physical too.

           The senior pastor remained aloof from me. He never said an encouraging word or prayed with me. He had a staff pastor who was to do that job. He and his wife were a help to me. His wife would come and take my wife to the hairdresser. I wanted this continued on a weekly basis even if I took her. I believed that it was emotionally uplifting to her.

           We took walks together. She shuffled her feet while walking, but could only walk about one hundred yards. She would begin to fall over. I would have to hold her up until I got to a place to sit her down. She could not use a walker, because she would walk into the wall or off the sidewalk. She could not reason things out. I would tell her something that happened to me. She then expressed to me that she did not understand what I was talking about.

           Sometimes she would get out of bed on her own strength. I woke up one night with my wife at the stove with all the burners up high. She didn’t know what to do.

           I started to sleep on a couch in the living room. I did not do this for my own interest. Doctors told me that it may help my wife to sleep better at nights. A couch is great for taking naps, but not sleeping on all night. I bought a radio device like what parents’ use for babies in their cribs. It did not help much to hear her, because I was so tired.

           I would put her into bed, then step out to look into the night sky. The stars don’t show much, because of the city lights. Planes would come across the sky heading for the airport. I would wish that I could fly off to somewhere and get out of my prison.

           I even thought about committing suicide, by putting a hose on the muffler pipe, and bring it into my car, Lock myself in, and start the engine. There were two main reasons for not doing this. First, it would be murder and against the will of God. Secondly, it would be a disgrace to my family. I was very depressed and discouraged with my life. Most of that God was silent. My praying seemed meaningless.

           One of the nights was the most dangerous for my wife. I was sleeping in the living room. I got a tap on my shoulder, which woke me up. She was standing over me, and asked me to take her to the bathroom. I said to myself, “Your up so go to the bathroom yourself.” I did get up, but found a white paste substance all over her face and gown. I asked her about it, but she didn’t know what it was or how it got there. I took her to the bathroom and back to bed. I did some searching around to find what she had been into. It was toothpaste she had eaten. This next thing I saw really scared me. She was always asking me for water to drink. There was a bottle of rubbing alcohol only inches from the toothpaste. She could have started drinking the alcohol thinking it was water. I started hiding things.

           I realized from that experience, I was going to have to put my wife into a nursing home for around the clock care. Doing this absolutely broke my heart. I made all the arrangements before hand without her knowing. I dressed and gave her breakfast, I sat her down and took her hand, and said, “Dear I’m going to have to put you in a nursing home.” She said, “No! No! No! I don’t want to do that.” She was in denial about her illness. She believed there was nothing wrong with her, even though I had to do everything for her. She asked me to come and see her in the nursing home. I assured her that I would. I took care of my wife for eight months before I had to put her in a nursing home.

           I broke down the next day back at my apartment. I realized that she would never sit at our table and eat with me again. She would never come home to be with me. I cried like a baby. I knew that when she left the nursing home it would be in a body bag.

           Going to bed my first thought was I’m going to be able to sleep this night. I got into the bed. I couldn’t sleep here tonight. She would no longer be in bed with me. My heart was broken and crushed. I got up and went out for coffee. I arrived back home about midnight. I put down an air mattress and slept on the floor. I ordered a new twin-size bed to be delivered the following day. I was able to get some sleep.

           I did have some family problems after I put her into the nursing home. Her sister was very upset with me, and felt that I didn’t love my wife by putting her in a nursing facility. Others in my family were encouraging and prayed for her and me. My love for my wife was very intense. We had not had a fight for thirty years. We had an intuitive knowledge of the other. We also were our own best friends. We did everything together and truthfully enjoyed one another’s company. We were extremely close to each other.

        I remember the days that I had with my dear wife. She and I were attending a Bible college when we became interested in one another. We wanted to get engaged, but I was going to have to work during the summer off from college to get the ring. I went with another college student to work with him in northern California. He was guaranteed a job, but I could not find one.

        Young folks do some crazy things sometimes when in love. The Fourth of July was coming up, so I hitch-hiked from upper Northern California all the way to San Jose to be with her over the Fourth. Her folks and I went to the Mount Hermon Conference Grounds in the Santa Cruz Mountains for July fourth.

       This was my introduction to that grand place called Mount Hermon. It was one of those places that became one of the most cherished places for us. We spent our honeymoon there. We went there many times to their programs with our children.

       Then I hitchhiked back to Northern California. My friend felt that I better look for a job at another place. So I hitchhiked over to the coast into Eureka. I found a job that first evening as a dishwasher for a restaurant in Eureka. That meant that I could have my meals there at no cost to me if I worked 7 days a week. I found a place to stay in a boarding house. Praise the Lord. I earned enough money to get a ring and a car just before going back to college.

        I had to ask her stepfather for her hand in marriage. As I look back on this meeting, I am amused by it. He was very serious about our marriage. “How are you going to support her at the level I’m taking care of her?” I don’t remember how I answered, but He gave his blessing.

         My wife was now in the nursing home. I visited her usually every other day. There were times I visited her every day. My hours of coming to be with her were always different. I was checking up on the nursing staff. She could not ring for bed service. She was helpless. There were times when I saw things that were wrong. I spoke up about it to the staff at the nursing home, and it was fixed. Except for keeping proper room temperature, I was satisfied with her care. Some of the nursing staff and other employees gave their best for her. They all loved her. It was her husband that caused all the trouble.

         A small Bible study group came several times to my wife’s bedside. They sang Christians songs and hymns, prayed around and read Scripture passages. She would sing along during the first few years. There was once a junior high church group came to her bedside and sang Christmas chorales.

        There were times when I was alone with her that I would sing, pray and read Bible verses to her. There were times that I would just sit and hold her hand, She would not talk or make a sound during the last few years of her life.

        I was there one evening when she had to be taken to the toilet. There was one person on each side of her. Her feet dragged on the floor. That hurt me deeply. She had lost all control of her body. (Appendix 4)

         My heavenly Father was working in my life during this time. I wanted to suffer for Christ’s sake, but I felt my suffering was not for Christ’s sake. God started to take hold of me.

          I used my computer daily. I have a Bible program in my computer. For some reason God took me to Psalm 103. He would not let me out of it. The Psalm was there when I turned the computer on and off. Let me give you some of the verses that stuck with me.

1 Bless the LORD, O my soul; And all that is within me, bless His holy name!

2 Bless the LORD, O my soul, And forget not all His benefits:

3 Who forgives all your iniquities, Who heals all your diseases,

4 Who redeems your life from destruction, Who crowns you with lovingkindness and tender mercies,

5 Who satisfies your mouth with good things, So that your youth is renewed like the eagle's.

6 The LORD executes righteousness And justice for all who are oppressed.

8 The LORD is merciful and gracious, Slow to anger, and abounding in mercy.

11 For as the heavens are high above the earth, So great is His mercy toward those who fear Him;

13 As a father pities his children, So the LORD pities those who fear Him.

17 But the mercy of the LORD is from everlasting to everlasting On those

who fear Him,

         I knew that my precious Heavenly Father was striving with me. I praise the Lord that he was faithful and so gracious and kind to me. I came back to God through Psalm 103. God then took me to 1 Corinthians 15: 3 – 4 “For I delivered to you first of all that which I also received: that Christ died for our sins according to the Scriptures, and that He was buried, and that He rose again the third day according to the Scriptures.” I meditated on these two verses as I did on Psalm 103. These two verses stayed with me for several weeks. Then it came to me. God was trying to assure me of my place with Him.

         God then took me to a very familiar verse in the Bible, which I had memorized along with the verse before it. The two verses are, “Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God” (Hebrews 12:1-2).

        This was the answer to my question, “Why?” It is, “Looking unto Jesus, the Author and Finisher of my faith.” We must keep our eyes of faith on Jesus, not on our circumstances. Believe me it works.

        God brought an overwhelming peace over me. I knew assuredly that we were walking hand in hand. I was given opportunities to witness of God’s grace to others. The timing of these events was critical, or they would not have happened. (Appendix 5)

        Oh yes, there have been joyful times, Christmases, birthdays and camping trips. We have been so blessed with having our children and grandchildren. There were also very troubling years. Our dreams were crushed and we lost many material possessions, but we still held hands and walked on together.

        When I went to visit her, it seemed that I was attending her funeral. The deep emotion within my heart is that she is still here. Oh, I know that in one sense she is gone, but there is still life. I can’t put it six feet under and walk away, not until God takes the life, that is my beloved’s. We had run, holding hands through the fields together. Laughing all the way. Our hearts were so light with love for each other. The kisses were so full and meaningful. Our intimacy in bed was pure delight and joy. My beloved had just slipped into the next room, and I cannot find her. Oh, she was still here, but did not speak to me in loving terms any longer. (Appendix 6)

         Moses’s Prayer in Psalm 90: 3 – 12 speaks to mans’ short stay on earth, which is very somber, but for us, His called out ones’ death has a blessed meaning, “So teach us to number our days, That we may present to Thee a heart of wisdom.”

         On December 13, 2001 at 10:30 PM, I received a phone call from my wife’s nursing home. The voice on the phone said, “Your wife has passed on.” This was the end or was it? My family and I watched as the coffin descended slowly into the bowels of the earth. She was gone! My lover, my lover was gone! Days, weeks and months later I was still grieving. I spent five years in the chamber of death, and death still stood close to my side. “Psalm 23: 4 Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me.” God is still my comfort. “Bless the Lord! Oh my soul.”

Blessed assurance, Jesus is mine! Oh what a for-taste of glory divine!

Heir of Salvation, purchase of God, born of His Spirit, washed in His blood.

Perfect submission all is at rest, I in my Savior am happy and blest; watching and waiting, looking above, filled with His goodness, lost in His love.

This is my story, this is my song, Praising my Savior all the day long;

This is my story, this is my song, Praising my Savior all the day long.

       My wife more than exemplified the virtues of the woman depicted in the thirty-first chapter of Proverbs: “Who can find a virtuous woman? For her price is far above rubies. The heart of her husband doth safely trust in her…She will do him good, and not evil, all the days of her life…She riseth also while it is yet night, and giveth food to her household…She layeth her hand to the spindle, and her hands holds the distaff…Strength and honor are her clothing…She openeth her mouth with wisdom. And her tongue is the law of kindness. She looketh well to the way of her household, and eateth not the bread of idleness.”

       All that was spoken about this woman is true of my wife. She did nothing to hurt me. We never took sides over finances or the children. There wasn’t a lazy bone in her body. When she spoke it was in wisdom.

       I didn’t always follow her advice, but she always held my hand and stood by me even if I did something stupid. She would never say, “I told you so.” She always was so kind.

       She has always been such a sweet person. She always had a cheerful attitude about life. She was a thankful person in adversity. She truly exemplified First Corinthians thirteen, which is the great love chapter. She honestly lived it.

        My wife also followed the instruction set forth in the fifth chapter of Ephesians: “Wives, submit yourselves unto your own husbands, as unto the Lord. For the husband is the head of the wife, even as Christ is the head of the church." This was so evident in her life when we were raising our children. Some have expressed to me that I did it all wrong. She never criticized me, but hand in hand we prayed and moved forward. God was our resource. He did His will in spite of us. Every one of our children is walking with God.

       My wife respected and loved me through every situation, even when we had to sell our last house, because of financial problems. She sat and cried when we signed off on our home. I honestly regret that I didn’t give her a better life, but she stayed with me. God bless her!

Her loving and devoted husband, Forest Steenfott

Lewy body dementia was first described in 1961 and has been increasingly recognized over the past 5-10 years. Sometimes it occurs alone as the presenting illness and sometimes it occurs simultaneously with Alzheimer's or Parkinson's disease.

'Cortical Lewy bodies' are the defining pathological feature of Lewy body dementia. These are abnormal brain cells which are distributed in varying degrees throughout all areas of the brain.

Lewy body dementia is very similar to Alzheimer's disease with progressive loss of memory, language, calculation and reasoning as well as other higher mental functions. However the progress of the illness may be more rapid than seen in Alzheimer's disease.

Fluctuations in confusion: the person may have acute episodes of confusion which vary from hour to hour. Because the 'confusion' is not there all the time, caregivers may feel that the person is 'pretending' to be confused.

Hallucinations: these may occur at any time but are often worse during the times of acute confusion. The most common hallucinations are visual and involve animate objects often people and often in the same place (e.g. always seeing a little girl sitting on a particular chair).

Sensitivity to some medication: patients with Lewy Body dementia may be more sensitive to some "sedative" medications. These cause or worsen the Parkinsonian features.

Parkinsonian dementia syndrome: some patients develop the features of Parkinson's disease (rigidity, tremor, stooped posture, slow shuffling movements), followed later by the fluctuating cognitive performance, visual hallucinations, memory loss and a progressive dementia. Others experience the cognitive symptoms first and go on to develop Parkinsonian features later in the disease.

People with Lewy body dementia may also have problems with their short-term memory, word finding difficulties, problems sustaining a line of thought and locating objects in space. They may also experience symptoms of anxiety and depression.

Anybody can develop Lewy body dementia. Post mortem studies examining the brains of people with dementia suggest that it is relatively common. However, because there are still questions about the exact nature of Lewy body disease prevalence figures do vary. It appears to affect men and women alike.

As yet risk factors for developing the disease have not been identified. Rare 'familial' cases of Lewy body disease have been described. In these families it is inherited as an 'autosomal dominant' disease which means that if a person carries the gene, he/she will eventually develop the disease. Their children have a 50% chance of inheriting the illness.

At present there is no cure for Lewy body disease. We need to understand more about the disease itself in order to look towards possible treatments. However it is sometimes possible to treat some of the symptoms of this disease. For example if depression accompanies the disease it will usually respond to antidepressant therapy. Occasionally if the hallucinations are unpleasant these may be reduced with medication.

Emmanuel Convalescent of Los Gatos October 17, 2000

371 Los Gatos Blvd. Ref. Mrs. Steenfott

Los Gatos, CA 95032

         I came to visit my wife Sunday evening by 7 PM on October 15th. I found My wife in a very bad situation. What if I had not showed up at that time?

       I found the room in darkness. The other lady in the room with her was already in bed and asleep. My wife’s dinner table was still beside her bed. She was propped up in the feeding position with dining cloth below her chin. I felt part of her sheets were wet. I checked her for wetness. That’s right, she was very wet.

       I went to find a nurse or nurse’s aide. The place was deserted. Finally a young Asian lady showed up. She was taking the evening snacks to the rooms. I told her to change my wife. She spoke broken English and my hearing is bad, too. She seemed to be annoyed with me and continued to give out the snacks.

       I went back to my wife and proceeded to change her myself. I laid her back down, took off her bed clothes, took out the wet material and diaper below her. I then put on a fresh gown, two spreads under her along with fresh diaper. I brought her blankets back over her. I then took the soiled material and dropped them in the doorway of the room.

       Another aide was back from somewhere. She was embarrassed to say the least. I know that it was probably break time, but this was two hours from dinnertime. The snacks are not more important than changing a patient’s wet bed in my estimation. Then I don’t believe that an aide or nurse should ever show being annoyed.

       I have spoken to you folks about this before. My wife can do nothing for herself. She needs to have more attention than other patients that can in some ways take care of themselves.

       Please, be more careful in attending to my wife’s needs. I would consider that patients would be ready for sleep by snack time not still in their feeding positions. Would you agree with me?

Very truly yours,

Forest R. Steenfott

       Something exciting happened to me today. (November 6, 1999) I went with some folks from Hilltop Manor along with folks from First Baptist Church of San Jose, California to Monterey, California. This was an all day outing to Cannery Row. We all went in different directions after arriving there.

       I walked around Cannery Row for a short time. Then I headed up the beach to “Lovers Point.” There was a trail along the beach. There were places along the way where you could stop and rest for a while. I stop quite often as you can imagine.

       I got to “Lovers point” about noon. I then walked up town to an eating place I knew of. This was in Pacific Grove. I walked back to the beach about 1 o’clock stopping again many times to look at the ocean.

       Just a little after 2 as I was walking along I saw a young black lady. She was reading a book on top of a post of the fence facing the ocean. I noticed that it was a Bible. I just walked by, but a voice inside of me started saying to me, “Go back and talk to this young person.” I turned around and looked at her, but continued to walk away. This happened four or five times. I could not get over this impression inside of me telling me to go back to her. Almost one hundred yards away, I turned and walked back to her.

       She was just about ready to leave. I spoke to her and asked if she was reading the Bible. She said, “Yes.” I said, “Alleluia, Praise the Lord.” We spoke for a while about our salvation. I know the Lord was leading me in what to say. I spoke of the tragedy that I am facing with my wife’s illness. Then I went into how God was keeping me while going through this with my wife. I used Psalm 103 as what God had used with me. We opened her Bible and read the Psalm. I pointed to verses that meant a lot to me. Then I told her about 1 Corinthians 15: 3-4. God used this to confirm my faith. Then to Hebrews 12: 2 about “looking unto Jesus.” She wrote these verses down. I told her that it was the Lord that brought us together. The Lord wanted me to encourage her.

       She belongs to a church and lives in Fremont, California. She wanted to spend this weekend before the Lord. She is 24, single and searching for the will of God for her life. I told her that women need to be more assertive in the church. She needed to commit her life to the Lord and go into ministry. I told her that I would pray for her. All this time she was wiping the tears from her eyes. We took hands and I prayed for her.

       Now I had to leave and she gave me a hug. I turned and walked off and did not look back. My eyes were wet with tears as I walked away. I was rejoicing and praising the Lord. I now know why I came on this trip. Praise God! Forest Steenfott

Appendix 6—Holding Hands

       I saw an elderly couple this morning walking along holding hands. It was an inspiration to me. I have been writing this in my mind most of the day along with tears in my eyes. This afternoon I put it in print. I want to pass it on to you.

       Holding hands appears so insignificant when two lovers walk along holding hands, but with the matters of the heart are vitally important.

       The eternal God of all the ages stooped down to His earth and created me from the dust of the earth in my mother’s womb. I turned to Him in rebellion. I would not have Him rule over me. So He sent His Son. Took upon Him my form. He put His hands on that old rugged tree. Pierced them through until blood came forth for me. I then placed my hands in His blood stained hands Then in His love and grace He will hold on to my hands through all eternity.

       I placed my hand into many girls’ hands during my youth. I was just simply having infatuations. Then college time came along. There was a young lady with whom I began holding hands. At first it was sheer excitement. I wasn’t mature yet so we unclasped our hands and went our separate ways. Time went by. Then one afternoon in a group gathering at the college, she came and sat down beside me, and took my hand.

        As days went by, I put a ring on a finger of her hand and we promised to hold and to cherish, in sickness and in health, for richer for poorer, until death do us part. We have been holding hands now for many years.

        Oh yes, there have been joyful times, Christmases, birthdays and camping trips. We have been so blessed with having our children and grandchildren. There were also very troubling years. Our dreams were crushed and we lost many material possessions, but we still held hands and walked on together.

       Then one day a physical and mental disease took my wife and she no longer knew who I was. Her hand no longer gave that impression of love. I didn’t forget. I know who she is and I am still holding her hand. But one day her hand is going to slip from mine. The Master holding her hand will take her to be with Him into eternity.

       The Master is still holding my hand and soon He is going to take me to be with Himself in eternity. Once again, I will take her hand. Then we will walk through all eternity, hand in hand with one another and our blessed Lord Jesus.

Forest and Grace Steenfott, May 2, 1999



Copyright © April 2007, by Forest Steenfott