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Your Stories

I want this to be a warm site where caregivers can learn, be touched, laugh and share. Please upload an entry with:

  • Your most vivid or touching memory
  • A funny incident that happened while caring for your loved one
  • Your advice to others just starting on the caregiving path
  • How you solved a particularly difficult problem
  • Anything else you would like to share

Just add your entry below. Thanks for sharing.  We can all learn something from each other.


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24 user-submitted stories

  1. Wendi from New York says:

    I never realized how much I loved my mother until now watching her in the late stages of vascular dementia. I feel like she is the child, and I am the embryo growing within her 59 years ago. The bond is so strong. She knows I am her daughter, and sometimes not, but our moments right now, she is in a nursing home, are so, so special. She asked me what is happening to me in my head. I told her it is just her illness and to not worry and just let it be. She is being taken care of very well in the nursing room. Nurses and staff are so caring for my mama. She is all I have left in this world and we talk about things that have so much meaning even if it is not clear to me I understand. She still worries about me and tells me to be safe. She has made a friend at the nursing home, he is partially paralyzed, but the bond they have is beautiful. Last week during a religious ceremony they sang God Bless America. She sang the whole song. My heart was so filled with love. Today was Music Therapy day and she sat with her friend and he kissed her hand. I have cried an ocean. This is the most difficult thing I have ever had to do, but the love I have for my mama now is the most intense kind of love i have ever had for her. I am writing this and crying. Every moment I spend with her is unpredictable, but amazing. I will get through this. I have god and my angels close to me. I feel them. I live with an auto immune disease so I keep on reminding myself that I need to stay well, because my mom still worries about me so I must be strong for her. She would not want it any other way. As tired as I am tonight on Thanksgiving eve I am glad that I found Marie’s website which has allowed me to tell you my story. God Bless and never ever give up.

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  2. Joanne from Minneapolis, Minnesota says:

    To those “just starting caregiving role,” I say GOD HELP YOU!!!!

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  3. Ursula from Virginia says:

    His father died of Alzheimers. His mother was diagnosed with Alzheimers a year later. My life capsized less than six months after as my husband was diagnosed with early onset Alzheimers, he was 55. My mother-in-law is gone now. I honored my promise years earlier to care for her. I find a great deal of peace today that I walked her through that adventure. I never felt sorry for her, she was never in pain. (my own parents died in cancer’s agony long ago – before Hospice and Palliative Care were available) Her world was warm, familiar, safe filled with love and respect to her dying breath. It wasn’t easy.

    I did feel sorry for my husband, he watched her demise knowing his fate was the same. She wandered, he rages. She rewrote a challenging life as a happier one, he growls about his miserable life when it was anything but. He was an important man. He changed the world. He was an adventurer, a doer, a goer. He knew world leaders, movers and shakers and explored every corner of the planet. He now sits for hours and days unwilling to go anywhere. He is furious if I leave for my own appointments. I know my days of brief escapes are numbered. I leave the room, he follows like a frightened toddler. Sometimes he is manic, literally bouncing around excited about some plan he’s come up with, a trip to the grocery store yet on arrival he’s perplexed that I brought him there. Sometimes he is terrified when he doesn’t recognize a road he’s driven for sixty years and believes we’ll never find our way home. He cannot recall his phone number or his best friend’s name, now his children’s names are at times elusive, it’s awful every time he asks about a friend or family member and again I have to explain they’ve died after he presses for the answer, he relives that pain of loss, he is sad. He no longer remembers he has Alzheimers – so I’m the idiot that put the books in the freezer, the licorice in the oven, hid his keys in the tub and forgot to feed him as he sits at the table chewing dinner.

    I am alone, I live in the mountains miles from town. Most of my friends are gone. My children live far away. I generally cope well with all this – I’ve had many difficult good-byes in my life.

    What makes this one so difficult is the increasingly rare moments when I see my lover in his eyes for a few fleeting seconds, when out of the blue I receive a tender, genuine hug with a whisper “I love you so much” or an old joke between us flickers to life and evaporates too quickly, my heart shatters again. I grieve the loss of my husband even as he stands before me very much alive yet very much gone. He is not in physical pain, I am – the broken ribs when a step ladder got in his way as I changed a light bulb, the stitches in my hand when he moves erratically in the kitchen holding a knife – he’s not abusive he just no longer comprehends cause and affect.

    I am blessed with my home, I am surrounded by a healing ancient forest teeming with wildlife, yoga and meditation, I have access to the internet and satellite television, a supportive family, finally there are helpful websites and blogs for sharing this journey and learning coping skills….. but no one can walk this with me or for me. I find laughter at the daily absurdities but a giggle unshared can be empty. What a peculiar adventure life can be.

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  4. margaret says:

    When my Dad, a brilliant scientist, developed Alzheimer’s I thought that I was prepared for the changes. As a therapist I had read a great deal and worked with family-caretakers but this was personal and difficult. The progression of his illness was painfully slow but I learned to celebrate the moments when he remembered who I was and the times when I could elicit a smile from him by making his favorite meal. The little things became very important and taught me to appreciate the small wonders of human communication and empathy. I have always been fast=paced, with high expectations and lofty goals. I have learned to slow the pace down, to be kinder to myself as a caretaker and to welcome accomplishments in whatever shape or form they take. When he called me by my mother’s name I recognized that as a loving statement and when he became frustrated I could hold his hand and soothe him by singing one of his favorite songs. He will always be the man that I respect, adore and love. Nothing has changed in that emotional space. It really doesn’t matter what day or time it is when you love someone….that is the beauty of a loving relationship.

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  5. Beverly from South Carolina says:

    After reading some of the others’ stories, I wanted to add that we were very lucky. My parents had long term insurance, and we were able to put them both in the best place possible. But even with the insurance – $3,000/mo – we have to pay a few hundred dollars a month more. The memory care/lock-down units aren’t quite as nice as the “other side”. But the patients on the whole, get more supervision. Most, not all, of the caregivers are kind and friendly. Some we had problems with, and did not hesitate to report them to the Administrator. We became a thorn in her side after awhile. But we wanted so much for my Dad.

    My Mom started out on the open side of the facility, and brought her bedroom furniture, a love seat and chair. She has a small refrigerator and a microwave. I think being able to bring her own things makes it easier on her, and on us. She is in lock-down now because she fell several times, each time meaning a trip to the ER, and she always wanted to go outside for a walk. She needed more supervision. And yes, the memory care unit costs more than the open side.

    I strongly urge people to please get an insurance policy for any long term illness you or a family member may face. It will make all the difference in the world.

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  6. Beverly from South Carolina says:

    My Dad was the love of my life. My brother and I both thought of him as some kind of “god.” He could do anything – USAF B-52 pilot, Merrill Lynch top executive (and he never went to college). He was also a superb carpenter and in his 70s he built beautiful furniture for me and my brother, which we cherish above all else. Daddy was wise, kind and generous. Always ready to lend a hand.

    When he was diagnosed with Alzheimer’s I really didn’t know what to expect at first. He was more forgetful, and we had to keep him from driving. As he got worse, I realized that I was beginning to lose him. My parents had a very large house, and my brother insisted my mom needed to downsize and move near him, where he could help with doctor visits, and day to day trauma/drama. I was single and not working, so I moved with them.

    In the new house, Daddy often asked where his bedroom was, or where the bathroom was. The move caused a decline, and I would not recommend it for most people. Whenever he had to be moved from one facility to another, or the hospital, he always had a setback.

    After another year or so, we made the decision to put Daddy into an assisted living facility nearby. It was the hardest decision any of us have ever made. And it was only because he would get argumentative and threatening when he was sundowning. My brother was afraid my Mom might get hurt one night – although my Dad had never hit another human being in his life. I couldn’t make myself go with my Mom and brother to take Daddy. I’ll never ever forget the overwhelming feeling of watching him walk out the front door, asking “where are we going?”

    Mom and I were with Daddy every single day – for lunch and again for dinner. He usually napped in between. It was so sad to see that most people had few, if any visitors ever. When it came time, I was the one who fed my Dad. He seemed to relate best to me. I paid the most attention to him, always holding his hand. And he had his grumpy and quiet days for sure, but for the most part he very compliant. He never complained.

    He really blew me away several times. I had always worn red nail polish – for years. One day I went to visit him and had just had my nails done in a lighter pink – and he took my hand as soon as I sat down, smiled and said “that’s a lot better.” He must’ve really hated that red. Another day he told me my top was too low.

    We had three OMG days. It happened with me twice, and once with my brother. Daddy was completely coherent for several hours. We talked and talked. He understood; he answered; he asked questions; he asked about different people. I didn’t think the family really believed me when I told them, that surely I was exaggerating. Then, my brother visited on his birthday, and Daddy was great. He spent the afternoon there. His wife said that he came home and went directly upstairs, in tears, saying “that was the best birthday present I could ever have.”

    We had hospice around from the time he moved in. I guess for us. I didn’t like having them around at all. It always seemed that the nurse would come just as he had finished his meal, and was dropping off. So her assessments were always that he was not responsive and slept all the time. My Dad was strong. He couldn’t walk anymore – he had suffered from a bad back for years – but he spent 3 wks in the hospital with pneumonia, and got over it.

    What finally brought him down was when he had trouble swallowing. He had been put on a soft diet, then a pureed diet. This went on for several months. Then one day Mama and I went to see him and the hospice nurses were waiting for us to hurry. They were spooning him morphine and he was gagging and could not swallow. I watched my father lose his life that morning.

    Daddy died April 12, 2013, and I still can’t have a conversation about him without breaking down. He was almost 89 years old. I guess the one thing I am so very grateful for, is that my Dad always knew who I was. I couldn’t have bared it if he didn’t know me.

    My Mom is now in the same facility Daddy was in. She has severe dementia and is a fall risk. She is 90 and still talking, but is very confused; thinks things are stolen when the item is just put away in a drawer; she was going to move with me to SC, but ended up in care before we could move. I call her everyday. I send a card every week. She thinks I live just up the street from her. She wants to come over and help me with the dogs. One day she won’t be able to talk to me on the phone. I am trying to prepare myself for that eventuality – as much as I can. I’ve been gone for 4 mos now, and am planning a trip up to see her soon, then about every 4 mos after that. That’s all I can do now.

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  7. Roxanne Lewis from Canton TX says:

    My name is Roxanne Lewis and my mom started showing signs of Alzheimer’s around 2009, before that fight she fought breast cancer but lost both her breast. She survived a deadly bout with COPD but survived that.

    She ended up slipping and falling causing her to break her femur. It was this surgery that pushed her forward faster through the stages of Alzheimer’s.

    To be honest I always thought our fight would be with lung cancer or emphysema because she had been smoking since she was 15 to the age of 65. I never imagined Alzheimer’s as being the one to rob me of my mom.

    After her fall and the diagnosis of Alzheimer’s my father told me basically sorry but this up to you. I love your mom but there is still things I want to do and he walked away leaving this all in my lap. I had to work and my family isn’t what I would say poverty level but I wouldn’t put us in the middle class group either. I researched nursing homes and found her one that she was in for two years, until she started wandering outside.

    I was given 24 hours to find her another place. I looked and cried and looked and cried some more. They wanted me to put her in a locked unit, but there was no way I could do that. She wasn’t to that point, not in my eyes.

    We found her a place that had grounds she could go into and would be safe. They presented well but within weeks we knew it was a false cover and started looking for someplace else.

    We found a beautiful place that was considered an assisted living place but had more of a nursing home feel to it. Unfortunately within one week she changed and became aggressive. I received a call at work to go to the hospital because my mom had become combative. She ended up being dehydrated and was in the hospital for two days. Again I was faced with finding her a place. It was a little difficult for me because I was staying with her in the hospital. So I went by the recommendation of the hospital social worker.

    This place had a code at the door to enter and exit. When I brought her there that Sunday I knew I would be placing her someplace else. I was appalled that this place was recommended to me. I was scared leaving her. I would go to work and then head 70 miles round trip to check on her. By that Tuesday she seemed too out of it. So I asked them to make a call to the doctor to come check her. When I came Tuesday I couldn’t even get her to open her eyes. She was in some sort of loop, repeating the same things over and over again.

    I went to the nurses station and told them something is wrong. I explained what was going on and they said they would call the doctor. I waited and waited and than walked back to the nurses station. She told me we will do labs in the morning.

    I lost it with her and yelled you will call an ambulance right now or I will take her myself. They called the ambulance and she was so dehydrated that she was borderline kidney failure. She was in the hospital for 5 days. By this time as great as my employer was. I wasn’t fulfilling my job commitment by missing so much work.

    I found another great place an hour from me but that said and answered all my questions the right way. The hospital had removed my mom off of all mood medications, with hopes of increasing her appetite and will to drink more. This nursing home staff and nurse were made aware of this. I was told with two witnesses that they were ok with her being that way so they could get a baseline for her behavior’s and know how to treat her.

    Within her being there approximately 7 hours I got a call that my mom was out of control. She had hit at staff and was cursing. A 5 year old walked over to my mom and my mom was holding her. The family seen this and freaked running at her and the child. My mom thought this was one of her grandbabies and was trying to protect her. They ganged up on her to get the child away. They called and ambulance and had here taken to the hospital again. Since she was still slightly dehydrated the hospital admitted her for the night.

    I met the staff from this nursing home in the morning with my witnesses and my niece who met my mom at the hospital that night. They said the admission lady shouldn’t have said what she did (she wouldn’t come to meeting) that they would take her back but wanted mom to go to a Geriatric Behavioral Center to get her medications adjusted. I said to them be honest with me, so I can start looking for someplace else. We were all told, honestly we will take her back once her medications are adjusted. She was at the behavioral center for a little over week. While she was there I started my search again.

    Once it was felt that she could leave the nursing home that referred there would not accept her back. I had found a place close to me and they answered all the questions the right way. I asked if she becomes combative as some Alzheimer’s patients do will you kick her out. They assured me they wouldn’t.

    So far they haven’t. She was moved to their locked unit because she tried to leave a few times and became a danger to herself and others. This unit was not like the ones I had looked at before. They have been kind to her and though she has sundowner syndrome frequently they have been great with her. She has had issues and I get phone calls everyday. The doctor is trying to get the right adjustment of medication but it is so hard. She was getting dehydrated again and they were prepared to give her IV fluids there but she fought them. So I met them at the hospital and fluids were given and she was returned to the nursing home.

    Unfortunately she became out of control on Friday. They tried their best to calm her but she started trying to hit other patients and than banging on the glass door trying to get out. She threatened them if they came any closer she would hurt them. She is in a wheel chair so they were also worried she would fall and break something. They sent her back to the behavioral center but this time she is on the side of patients that are a danger to themselves and others. The nursing home will accept her back once we can get a grasp on these behaviors. So far these last 3 months she has been in the hospital every weekend with reasons of dehydration, behaviors, falling. I have lost my job, missed a grandson and grand daughter’s pre-k graduation, birth of a grand baby.

    On top of my father walking away years ago leaving me to fend for my mom myself, I was diagnosed with Rheumatoid Arthritis 2 years ago. So I a trying to deal with my health and that of my mother’s. My finances are going down hill and I know I need to work for my family to make it but I also know until we can get some stability I don’t see how I can keep a job. My mom is my world and has been through so much. I just wish I was wealthy because she would have the best of the best I could give her.

    I have found that the best places don’t take Medicaid or Medicare payments. The place she is at is ok but it isn’t a memory unit equipped for Alzheimer’s or Dementia patients. The movies and tv shows portray Alzheimer’s places as these wonderful looking home away from home places. I am sure they exist but only for the wealthy not the middle class people.

    I would love for there to be a place she could stay her last days and it feel like home to her but I don’t see that happening. I will do my best for her and research as much as I can and try to make life a little better in her world.

    I will do my best to try to stay healthy for her. I feel so much guilt and like I am letting her down.

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  8. Irma Desiderio from New York says:

    As a caregiver to a great aunt for almost 5 years, I thought I had the upper hand, as I was completing a gerontology degree. This could not be further from the truth. Giving the basics, without getting into too much detailed drama, my great aunt has no blood relatives in the U.S. She and my great uncle never had children and she only arrived in the U.S. with a suitcase in hand. She was a caregiver to my great uncle (22 years her senior), who died in 2006. Financially, she was in shambles when I entered into her world. Her home of 45 years is in pre-foreclosure, she experienced financial exploitation (now in debt) and took in tenants who either didn’t pay rent or paid it when they felt like it. Four plus years later, not much has changed because she is so gullible, she does not listen to anyone. During this time, I have helped her with health issues, which have declined drastically. She received a pacemaker last year and in the last year, I have noticed her cognitive issues have gotten worse. Recently, she was evaluated by a neuro-psychiatrist. I sat diligently, explaining all the relevant changes I have noticed and even mentioned she seems to be experiencing ADHD behavioral issues. The forgetfulness, change in personality, aggression, defiance, disorientation, restlessness, lack of sleep, slips and falls, wondering – all point to dementia and I was waiting to hear that my concerns were valid. After 4 hours of testing and a $175 parking ticket, I receive the assessment and I am told that while she appears to have some cognitive issues, he cannot definitively state she has dementia. What?? I brush myself off and proceed – with one foot in front of the other. Over the last 3 months, my great aunt’s aggression has gotten progressively worse. She has insulted her aides to the point where they have called me up crying, stating they are going to quit. She fell asleep on the kitchen table and woke up in such a state, she confessed she wondered about the house and property for 45-60 minutes looking for my great uncle (who died in 2006). She fell in the unfinished basement and scraped a varicose vein and bled out and almost died! She does not remember why she was in the basement and insists she did not fall or scrape her leg. She fell 3 feet from where the aide and I were standing and broke a bone in her hand, while trying to climb over a pile on the floor. She never called out to ask for help. She goes to a senior adult day care 2 days a week. One day, they took a trip to a local amusement park and was accompanied by an aide. The aide knew she has a pacemaker and the two of them went on the roller coaster ride. She passed out and the paramedics were called, but she refused help. We had a discussion one day about how she refuses to dance at the senior center and tells the other seniors she can’t because she has a pacemaker. Two days later, she danced at my nephew’s wedding. When I saw her, I shot over like a bullet – and managed to catch her just in time before she passed out. Once again, the paramedics were called and they held up serving dinner until she came back into the reception! Less than 2 weeks later, she danced at the senior center, passed out again, and she was taken to the hospital and kept over night for observation. In the last 3 months, she has been in the E.R. 3 times! I do not live with her, but visit 1-2 times a week going through mail, making sure she has her medications and follow up with any phone calls she receives. Two weeks ago, I found out she was communicating with a scam artist from Jamaica and had sent him via Western Union about $150 – plus she called him back, so the phone charges amounted to about another $50! I pulled up the information on my cell, showing her this was a scam. I told her not to answer the phone if she does not recognized the area code. The aide called me recently and proceeded to tell me she is sending this person more money and she tried to tell my great aunt not to send him money because it was a scam. She cursed the aide out and told her not to follow her, and she left the house, took the bus to the bank, took out cash, went to a location to wire more money to this person who was promising her a million dollars and a car, and took the bus back! I arrived as the aide was leaving, and I spent hours, going through mail from psychics and scam artists, and finally convinced her to show me the receipts. Total sent: $1,527 plus $105 in Western Union charges! I will be taking her to her cardiologist next week and will be discussing the next move, because I am so very lost, stressed and beside myself, I no longer know which end is up! I am not a blood relative. She has two sisters who live in Italy. Her financial state is beyond comprehension. She has two tenants that have stopped paying rent and I cannot drag her to court on a continual basis to try and evict them. After all, what is the point when the house is near foreclosure anyway! On top of this, I have been out of work for over 4 years and after Hurricane Sandy, I worked for FEMA for two months. In that timeframe, she managed to change EVERY one of her doctors and dentist, where it took me 8 months to get her back on track. I am scheduled to start an internship in January and I am frozen in fear at the thought of what could and will go wrong! I receive phone calls from social workers, nurses, her long-term care organization, Adult Protective Services, etc., etc. on a regular basis. I never know what to expect next! I called her neuro-psychiatrist and all he could recommend is – “take her to the E.R. and request a psych evaluation”. Well, newsflash, sir, isn’t that what you were supposed to do 3 months ago?? You should spend 12-18 hours in an E.R. instead of me!!! So, for all those who are dealing with undiagnosed or improperly misdiagnosed dementia loved ones, I truly sympathize with your situation, because I am in the same boat . . . alone . . . . with no ores! So, even with that fancy degree I have, when it comes to dealing with a loved one, all that education goes right out the window, especially when you have been dealing with the person’s behavior for almost 5 years. The problem: I was totally unaware that my great aunt has been exhibiting dementia for all that time because all her doctors were telling me otherwise. Go with your gut! Be persistent and most importantly, document everything, because you will not remember all the circumstances that brought you into the doctor’s office in the first place! I think if one more doctor tells me how wonderful I am, how lucky my great aunt is to have me, and I’m doing such a wonderful job . . . . I truly believe I will scream at the top of my lungs until my head explodes! Just for once, I would like to be taken seriously! Just for once, I wish my great aunt would get the help she desperately needs! Just for once!

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  9. Kim Lannoye from I'm at home right now. says:

    My name is Kim & I am, oh hell what does it matter how old I am, I have Early On-set Alzheimers. I wish someone would write a book about the person with the Alzheimers. Like ‘A one year journey of a person with Alzheimers.’ To write about their life with Alzheimers & how they see & do things. Caregivers know the physical of a person with Alzheimers, but they do not know what it is like to walk in my shoes & live with a defective brain that has a mind of its own. Someone should write a ‘real’ book.

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  10. Hi Marie,

    I came across your article in Huffington Post- “Is Alzheimer’s Always Depressing”. I am also a caregiver for my mother and have been writing a blog for the last 3 years, which has touched so many other caregivers in a positive way. http://www.Mommyhero.blogspot.com.

    I am absolutely Jane in your article. I have also written a book, My Mom My Hero, which has over 100 great reviews(on Amazon). The journey with my mom has brought out in me an unconditional love and respect for my mother, that perhaps before she became ill I was not totally in touch with.She has inspired me each and every day. I would love to hear from you. Have a great day. Lisa Hirsch

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  11. robin says:

    my mother has vascular dementia she is in a facility. I miss her being my mom. I miss her giving me great advise.. I lay on her bed and hold her hand she knows me but doesn’t stay long with me. She has awful mind thoughts that are not real… She looks so tormented at times and gets really mad if I don’t agree to go take care of whatever she thinks is happening.. its just very hard on the family. But I do know that God has his reasons and blessings in all this.. love to mama Quinn in Iowa…

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  12. Margaret Honnold says:

    This was an entry from the journal I keep sometimes, as I care for my beloved husband, who is a victim of Alzheimer’s. He had just gone into 24/7 care last October.

    Dancing (without the Stars) Forever or May I Have this Dance for the Rest of My Life?
    by Maggie Honnold
    Today, I touched the past. I went for a dance. I danced like no one was looking, and it felt like the whole world watched. It pulled on my heart and for a brief and precious moment, 30 years disappeared and I was loved and held and treasured by a man I have loved and who has loved me more that I can begin to describe. And this happened in the most unlikely of places, not a stage with a glamorous audience of stars and king makers looking on, but in a small dining room of the local nursing home filled with the most unlikely audience of the aged, the broken, the ill and the lonely.

    It did not happen with a huge orchestra of professional musicians, who demand great fees to display their expertise, all dressed in thousand dollar dresses. But with the most unlikely of musicians, a middle-aged woman, dressed in jeans, tee shirt and a wooden cross necklace, playing a small keyboard and using some tracks to accompany the melodies she played with one note of her right hand. It happened as she sat alone, and shared her beautiful contralto voice, singing and interacting with “the audience”- some awake, some smiling, some wondering what was going on and not really knowing that God was going to use her to give a gift to one of His children of immeasurable comfort.

    For the past 4 days I have been sick. I have had some viral BUG that is so contagious the schools are sending home notes to the parents warning about it and telling students to “stay home” if ill. But, I am a grandmother, recently retired from my Director of Nursing Job at our local health department and no longer working with kids, and living only with my 4 Basset Hounds and settling into a life style that is quietly apart from the life I once knew. I should not become ill with a kids virus, AND I WAS SUPPOSED TO GO TO SANNIBEL ISLAND TODAY FOR A RESPITE TRIP. So imagine my consternation when “THE BUG” chose to visit me on Thanksgiving night making it necessary for me to miss my frequent visits to my husband, a victim of Alzheimer’s and to cancel my trip. Oh well, today I finally returned to visit Carl, who was really glad to see me and I him and who wanted to go to Florida in the winter anyway, right?

    We sat in the main lobby and he had his arm around my back and hugged me close. I “talked” to him, as much as one can to someone with NO short term memory. And I wished, oh how I wished that it was years ago and I could really talk to him and fill him in on the last four days. But the only familiar and comforting thing was the feel of his arm around my back, holding me close to him. Even though I could feel the frailness of his arms and rib cage, I focused on the strength that remained in his hand as he slightly rubbed my back. Sort of like old times-but not really.
    My Alzheimer’s caregiver chant ran through my mind “sort of, but not-sort of, but not…sort of…”

    As we sat there in the main lobby of the nursing home where Carl is now a resident, in through the front door came the church group and their musician, and they invited us to “come and hear their music.”

    Someone said “maybe even dance a little.”

    So, off we went. Sitting in the back row, Carl talked through most of the upbeat numbers. He could remember the words to a few of them, but eventually they all were Blueberry Hill. He still has a softly beautiful tenor voice. He enjoyed the Christmas songs, the military tribute and some of the more modern songs. And then it happened.

    I heard the first notes and the tears began, Carl looked at me, not recognizing the tune but I DID. It was the song that we had played at our wedding. Ann Murray made it famous and it was a representation of our marriage and love for one another, “Could I Have this Dance for the Rest of My Life?”

    Carl and I fell in love when I asked him to dance thirty five years ago. He put his arms around me and it was all over. We loved to dance. He was a wonderful dancer. Many times we would sing or hum our own music and just dance in the bedroom, or the kitchen or the basement, or in the back yard or even in the bathroom, if the mood hit us. We loved to dance! It was part of us and our relationship. And now there was “our song” being played in this most unlikely of places by the most unlikely musician, when I was not even supposed to be there, I should have been in Florida.

    So I did what any dancing fool would do, I asked him to dance. I took his hands and pulled him to his unsteady feet and there in the nursing home dining room, among God’s royalty, His servants and children, Carl put that strong hand in the middle of my back and guided me into a little dance, with everyone watching and crying and eventually clapping for us.

    And yes, he could still twirl me!

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  13. Brooke Westlake-Kelley from United States says:

    It’s heart breaking to watch, and I know all to well first hand about this awful disease because of my beloved grandma Bev. She lost her battle to this on February 24, 2012 in my arms.

    My Grandma Bev was diagnosed in 2000. At first the changes and forgetfulness were not that noticeable She was still her fun loving self. Laughed at life in general. Didn’t take to many things to seriously, loved to ski in the winter and hike in the summer. Maintained healthy eating and lifestyle. Always got her hair colored because she didn’t like having any grey hair. She was a strong, fun loving woman whom had married three times, had one child and one grand child (me). She helped raise me (as her son, my father is a heroin addict). I spent all my summers with her. She took me cloths shopping each school year, put me in swim team, taught me how to save money. She also taught me to say please and thank you. Told me how to introduce myself an shake a persons hand. She always wanted me to pick up her knack for skiing, but she knew deep down I was a pageant girl at heart. She loved to tell her friends about how hard “Brooke” worked with my jobs in the medical field as I worked my way through college. Grandma would occasionally pay for my school books or send me some extra money for school. We saw each other at least twice a year when she traveled back and fourth to her Oregon home to her Arizona home with her 3rd husband. We talked on the phone several times a week.

    As the years progressed so did her disease. It was very hard for me to see this strong loving woman go back into a child like state. I also had to step in and hire an attorney to get guardianship of her, because the disease was progressing and she wasn’t received the proper care from her much older husband who had cancer. The courts awarded me full custody of my grandma.
    The first time I saw her at the nursing home, she would smile, I would cry. She didn’t know my name some of the days.. She would have moments where she did “know me”, but other times would sit and smile and me. My heart broke each time I had to say goodbye. I would watch her stair at me behind a locked door peeking through the glass window in the facility because that is where she had to be due to the progression of her disease.

    When I recieved a call that she took a fall and had to go to the hospital I knew it was all coming to and end. They told me she actually was doing well and had a small brain bleed. 2 months later they called me to tell me my grandma went to sleep the night before but had now become un-responsive and it was now time. I spent the last 5 days with her at her bedside talking to her, holding her, changing her, help give medication to her, until she took her final breath with me cradling her like a child.

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  14. Shirley McCullough from Othello, Washington says:

    My husband Bob started showing signs (which I did not see as Dementia) in 2008. There were several incidents that I would question him on why he was doing whatever it was and he would answer something but neither of us thought anything about it until he put some eggs in a frying pan with no water to boil in the middle of the night. The dog woke me up whining about 4:30 AM. I went into the kitchen and the eggs had exploded all over the kitchen. I am surprised the smell didn’t wake me up. I mean on the ceiling, 8-10 ft over on the counters, and all over the floor. I couldn’t believe it. Bob did not remember doing it except he wanted an egg for breakfast. After several other things we went to our local Doctor and he recommended a visit with a neurosurgeon. He could not write the numbers on a clock or remember the name of our Vice President(whom he did not like at all). That really scared me and I knew we were in trouble.

    He took the meds they gave him for 6 months but we saw no change. When he got lost in our orchard and called our son-in-law crying it was a real eye opener. Gradually we saw him go down hill. Then he fell and hurt his back in 2011. The Doctor said he needed the surgery because the pain in his hip and leg from the sciatica was so bad but it could cause the Dementia to advance rapidly. It did and now he has been in the long term care since July 2011.

    We moved into town from our country home where we had lived for 46 years when he got bad as we had to get him off the highway in January of 2011. It was a short time and he never got used to the new house before he moved into the care center.

    We have been married for 48 years last December. The first time I have lived alone and have had to make decisions on my own. I have 2 wonderful daughters and a wonderful and truly helpful son in law. They live in another city 60 miles away.

    It is truly heartbreaking to see your husband, lover, best friend and life partner lose all of his abilities to take care of himself. Sometimes he acts like he knows me and other times(like last Saturday) he asks: “Where is Shirley?” when I am sitting right there holding his hand and rubbing his arm.

    There is no way to be prepared for this. It seems to come in waves of being afraid to go see him, being glad when he seems better, and being so upset when he is having a bad day. I cry all the way home which is 25 miles away. And I get so angry, but I never think, “why me?”. I have had 48 years and that is alot longer than some people ever have. I just question, how long will this go on with this being in limbo? I feel so sad for him and for myself. He was so afraid of this part of it when he was still able to think things out. He said he didn’t want to live this way. He would often tell me that he was afraid of forgetting me. We always had alot of good times and did alot of traveling. I am thankful now that we did do it. He seems to know our 3 grandsons when they go to see him. He doesn’t make much sense when he talks and still spends alot of his days farming.

    I am very thankful for the wonderful staff at his care center. They show alot of love to him and he makes them laugh quite often they say. It is such a terrible disease that takes its toll on all of the family and friends of the patient. He does tell me he loves me often when I ask and we always hug and kiss when I leave. One day when I said I would be back in a couple of days, he said “what are you leaving for if you are going to come back?”. I love him so much.

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  15. Elaine C Pereira from southeastern MI says:

    Growing up, I thought my mom (Elizabeth Ward) was a amazing until I ventured into the obnoxious teenage period, when she couldn’t do anything right. And, except for those three or four years of my mouthy disrespect, Mom and I were best friends.

    Now, my best friend is gone! Alzheimer’s has claimed yet another victim, choking Mom’s kind, talented spirit to dust, last July 8, 2011. More than a year after her death, I have “survived” (depending on how you define it) all of the landmark holidays without her. She would have wanted me to.

    Gradually, wonderful memories of her are emerging from behind the dark clouds of Alzheimer’s, an insidious disease that robs us of our parents, spouses and loved ones. I can feel her energizing spirit envelope me with positive memories and I grieve less for my loss. I can hear Mom’s kind voice once again, not the ranting of a possessed woman. I can feel her strong arms hugging me, not her foot kicking me in the butt! I can see her beautiful blue eyes and warm smile, not her strained face conveying unadulterated confusion and terror.

    Looking back (hindsight is indeed 20/20), there were hiccups in Mom’s memory as far back as early 2005. My dad had passed away the previous April in 2004 and tragically my brother Jerry also died that year after losing his battle to cancer on December 30th.

    We had a small memorial for Jerry at my cousin Mike’s in Sedona, Arizona, the following February. Mom, my husband Joe, my daughter Angie and I flew out for it. I was barely in the door at Mike’s place when he took me aside and whispered, “Aunt Betty thinks she’s at her apartment in Kalamazoo. She asked this morning where her room was, number 342.”

    I should have been alarmed that, after flying out from Michigan to Arizona, Mom still thought she was in her apartment! I chalked it up to devastating grief after burying her husband and her son in the same year, but I shouldn’t have. It wasn’t just stress. It was a warning sign, only I wasn’t listening.

    Over the next five years there were increasingly more incidents of confusion, paranoia and agitation.

    Mom lived in an independent senior facility in Kalamazoo, MI but I lived two hours east of her. I made the trip over to Kalamazoo or made arrangements to have her come to our house for a visit at least once a month.

    On one of my trips over, Mom met me at the door, ranting. “They stole my brown pants; two pair!” She growled. “The cleaning ladies took them!”

    I made a feeble attempt to suppress my laughter and eye rolls, visualizing either the very tall or very heavy cleaning ladies attempting to stuff their too long or too fat legs into my mom’s petite pants. It was a hysterical visualization for me, only Mom wasn’t laughing.

    Another time she said, “They took my nail file.” (Seriously, a nail file?) Or “seven dollars worth of stamps,” and there were more irrational accusations.

    But despite all of the witnessed and reported drama, I still perceived my mom as more functional than dysfunctional. I naively lived in denial and ignorance, blissfully rationalizing how capable she seemed. (The operative word here is “seemed”).

    I didn’t know how many times Mom got lost driving to familiar places as far back as 2006. She drove right past her friend’s house, oblivious to the fact that Margene was standing at the end of her driveway “waving to Betty as she sailed by.” Another time, Mom drove 20 miles in the opposite direction meandering around in search of her dentist’s office, which was only one mile from her place.

    Couched warnings from staff at her senior facility that “Your mom needs more supervision. Betty should be moved,” fell on my emotionally deaf ears, until late 2009. By December of that year, Mom was unraveling quickly and I was emerging from the fog of denial that paralyzed me from being more proactive in her behalf.

    I observed Mom’s painful attempts to write out checks at Christmas to her granddaughters. Her once impeccable handwriting had deteriorated so substantially, that her numbers were almost indecipherable, resembling random scratch marks. On a spring visit, Mom’s started anxiously looking for her room, the infamous #342, in our house! Then she asked me what I was doing in her apartment!

    As the adult, the nebulous abyss of being a parent to your parent is a delicate responsibility. Balancing respect and autonomy and naturally expecting them to be accurate when they tell you, “I’m fine” is a daunting challenge. Somewhere deep down, you know it’s not true. They are no longer “fine.”

    I had finally witnessed enough bizarre episodes to recognize the proverbial ugly truth. Mom had to be moved to a secure facility with more supervision. Her delusions increased as she reported seeing “your dad in the parking lot” and visions of her own mother, my grandmother.

    Mom’s final passage began after a surgery to repair a partially collapsed lung in May 2011; Mom never rebounded. She virtually stopped eating as she started to take control of her own destiny and on July 8 2011, Mom rejoined her boys.

    From my book I Will Never Forget:

    I envisioned dementia as a smoldering fire, its smoke whirling up and down, in and out, around and through Mom’s brain. It would choke her orientation to time, cloud her vision or pretzel-twist her gray matter. It always lay in wait, concealed in the crevices of her short-term memory centers, fogging judgment, reasoning, and logic. For a while, it would remain dormant, having already ravaged parts of her mind permanently until, like wildfires, something sparked it to flare up, engulfing and consuming its insatiable appetite for brain cells.

    Mom would never get better. All I could do was be there for every step of her journey through hell and pray that was enough. She deserved better; everyone did. She deserved to go out with her boots on, not have her mind chipped and chiseled away piece by piece.

    Elaine C. Pereira

    [email protected]
    734-395-3615

    http://elainecpereira.authorsxpress.com

    I Will Never Forget-A Daughter’s Story of Her Mother’s Arduous and Humorous Journey Through Dementia

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  16. Marilyn from Pennsylvania says:

    Several years ago my mother had reached advanced stages of Alzheimers and now required nursing home care..The nursing home she was residing in underwent renovation so the entire population was temporarily relocated to a guest setting which caused upheaval – leading to further confusion for many. One evening after work as I visited Mother, we shared an evening meal in the cafeteria and sat to visit in the lounge…As our time together was ending and I had to return home, Mother looked at me with a radiant smile and said “I like you, you’re such a nice young lady”…(I am her only child (<:…. ) I chuckled with delight and reminded her that I was her daughter and that all the manners, warmth and love I was able to share were a direct result of her loving upbringing…I gave her a big hug and she clearly understood the bond that we shared…if not precisely who I was..but somehow, that I was hers…Another evening, earlier, I had come to visit at her original setting and the snows were falling rapidly, it was late at night…and I had to leave to go to work the next morning…She peeked out the window and patted the single bed beside her and said…"no, don't go out in the snow…you can stay here with me until morning..be safe"…With tears, I assured her that I would be ok…ever the mother, trying to protect me, even from her bedridden state..Our bond is eternal…and I would not change a moment of the caregiving, from diagnosis to death…though it was a lengthy struggle…May God bless and give strength to all who travel the path of caregiver for a loved one…tis a gift in disguise…

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  17. Bonnie Skover from Loudon, TN says:

    I lost my dad in January, and I am the caregiver of my Mom who had a stroke in June and now Alzheimer’s. I am also going through a divorce, so I have a lot on my plate and desperately in need of advice so I am so happy I found your book and inspirational site! If anyone can help me I would appreciate it. I am disabled so I can’t keep her at home and found an assisted living facillity in Memphis, where we will live to be near my daughter and granddaughter so sit will bring her joy for awhile at least.

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  18. Annie G. Laws from United States says:

    I was reading Marley’s story and the 6 User-Submitted Stories– WOW !
    They are full of I’s – insight, inspiration and interesting. My mom had Alzheimer’s for 5 years. I relate to so many of the stories. (1.) Suddenly, my mom was loving Teddy Bears just like the writer said.(2.) I learned to join her reality just like the writer said. I am a witness that it causes you less aggravation and the patient less agitation. (3.) I observed my mom, (nurse) assisting the staff. 4. I knew that mom had forgotten how to read when she read one half of the card perfectly, stumbled during the second half and refused to read the entire card.(5) Finally, Mom taught the Sunday School
    lesson at least 12 Sundays while she was on Alzheimer’s.-She would select two students to read the lesson-then she would know what it was about and then she would discuss the entire lesson. The last night of her life, my mom asked the nurse, Where is my daughter, Katie ? I had decided that if my mom needed to go to the nursing home, I would not be upset because I would be there for her. ADVICE–Alzheimer’s patients love your presence more than your presents. They may not be able to talk, but they know you are there for them- there at home-there in the hospitals, there in the nursing home.. As the writer, Marley said so beautifully, Alzheimer’s patients may not remember the details of the incidents- but they remember the love !!
    Annie Kate Gaskins Laws

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  19. Bakhus Saba from Leamington ontario says:

    My name is Bakhus Saba, Nine months ago I placed my Mother in a retirement home with Alzheimer’s. I had been taking care of her for the past 7 yrs, she has been with me all my 52 yrs. The song Still A Child was written about what a caregiver is going through when placing a loved one in full care. John and Michele Law (The Laws) wrote the music and that’s John singing in the video.

    We have pressed 500 cd’s to raise money for those in need and
    are being taking care of in full care homes, Day Away programs for seniors, and for Alzheimer research. The profits will go towards these programs. If you can get behind this song in anyway please let me know, Good song for Blake Shelton or Tim McGraw to sing, pass it on to them if you know them or can get it to them
    Here’s the link to the video Still a Child
    http://www.youtube.com/watch?v=WuY2_8DWqtA
    If you can post it on your site, facebook, Twitter or share your friends it would be great
    It can be purchased on cd baby http://cdbaby.com/cd/johnlaw2

    I want to bring an awareness to care giving especially for Alzheimer patients and the growing need to address this huge problem that our health care system will be under in the future WE NEED TO DO SOMETHING ABOUT IT NOW. Do you have any ideas to help this project along?
    Thank you

    Sincerely
    Bakhus Saba cell 519-322-6866 Email [email protected]

    Still a Child-written by John Law, Michele Law and Bakhus Saba (Socan)

    If you knew what I was going through,
    You’d approve of what I had to do.
    Putting you away for the rest of your days,
    Plays on my heart and it tears me apart

    I walk away with you on my mind,
    It’s killing me to leave you behind.
    You’re begging me to take you home,
    But I feel so guilty because I leave alone.
    Chorus
    Cause I’m still a child when I look in your eyes.
    And it make me cry and it make me cry
    Now every hello feels like I’m saying goodbye
    Goodbye good bye good bye

    If I could have you back for one more day.
    Would you reassure me what I’m doing is okay
    Would you comfort me and ease my mind,
    Cause only you can help me find my way

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  20. Lee Ann Davidson from Cincinnati, OH says:

    I cared for Alzheimer patients in their homes and as a private duty sitter in nursing homes for 5 years. My mother had early onset Alzheimer’s disease and struggled with that for a long time. We lost her in March of 2004. She wasn’t old enough to draw Social Security yet.

    We had gone to visit her in the nursing home and taken our 3 children. Mom was quite restless and didn’t seem to know us at all. She was seated in a “gerry chair” while we were visiting. Our son was still small enough (about 2 or 3 years old) to be carried or held and he was asleep. Fred and I had been passing him back and forth while we visited with Mom. Mom was very restless and was not responding to us or our older daughters (early teens) at all. Finally I asked Fred to just help me for a minute and asked Mom if she would please hold her grandson because he was getting too heavy for me to hold anymore. Fred helped me put our son on her lap and we watched as she raised first one arm and then the other to cuddle him close and secure. She did not say a word, but she started to calm down and soon a smile appeared on her face and she was no longer restless.

    We stood there and watched while she cuddled her grandson close and settled herself more comfortably in that chair. Then we watched her go to sleep with a smile on her face all the while holding her sleeping grandchild. The nurses came by and they were surprised as well. That is a very precious memory to me all these years later.

    Thanks for writing your book.

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  21. Diana from Cincinnati says:

    The shock of learning that your husband has dementia at the age of 57 is devastating. That was 7.5 years ago. What is helping me get through this is my family/friend support system; knowledge I go after within the Alzheimer organization, including my online coach, the HELPLINE, external conferences, support group and more. In my opinion, the best thing is to understand everything that is going on; face it head on, maintaining your lives as normal as possible; share many laughs; and scream when you need to. Just try not to scream “at” the demented person–not always easy. Driving – I was fortunate that my husband decided on his own not to drive, but you can ease into it by saying “I’ll drive” whenever you can–he/she will get used to and then basically forget about driving. Showers – help them maintain stability and stay close by in case he/she needs your help. There’s more…find yourself a caregiver that you call from time to time to talk…it really helps!

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  22. SG says:

    Oh yeah, I can tell you what she was like when Ms. Queenie had her wits about her. Her ear was always cocked for the sound of someone needing something and she would never, ever sit with her back to any door. The last time I saw her was mid to late July. The day was sweltering hot but she would never feel it. Being outside would not be her way. “We remember what we want to,” and “what goes around comes around,” were two things that she loved to say.

    I can see them three now, two sitting Fu Dogs with Ms. Queenie in the middle. Jasper to one side; Pharaoh to the other. All three looked downright regal the way I remember it. But then I don’t remember things too good myself, anymore.

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  23. TEL says:

    Grandma and the Girls
    Here is a story from my own experience demonstrating how helpful, while not easy to do, it is to be attuned to your loved one’s (the Alzheimer’s person’s) reality:

    My uncle was with grandma at home. She was asleep. Mom and I arrived, having been out on errands. Grandma suddenly awoke very agitated. She looked at us with angry eyes demanding answers. “Where are the girls?! Where are they?” she asked. Mom went straight over to her scolding her like a child saying, “There are no girls! Now just settle down.” Grandma stood straight up and insisted on knowing where the three little girls were. Nothing short of a fight ensued between the two of them. Arguing over what was reality had apparently been the norm for weeks. It was very important to mom that her mother, grandma, comprehend the truth. Mom was understandably unable to accept that grandma’s world was now different from ours.

    I put down the bags and separated the two of them. Taking grandma’s hand I told her we had taken the three little girls home to their parents. “The girls wanted me to tell you they really enjoyed visiting you and wanted to know if they could come again.” I said.

    Grandma sighed with such relief. Her whole body relaxed and she gave me her familiar “grandma” smile. “I’m so glad they’re home okay,” she said, “I thought they were lost or worse.” She sat back down and started playing with her fake flower arrangements.

    Mom gave me a scathing look. I had definitely done something wrong in her eyes. I am sure she felt I had sped grandma’s decline along by doing this. I pointed out how relaxed grandma was now and probably too bluntly asked mom which was more important, our reality or her happiness.

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  24. JY says:

    I was a social worker in various nursing homes over the years and a number of stories about demented residents come to mind. I’d like to share one humorous one and one particularly touching one.

    ————

    Viola: The Feisty, Loveable Retired Nurse:
    The inflection in her voice and the twinkle in her eye told me this was a personable and friendly lady, despite the fact that Alzheimer’s Disease was draining away her cognitive functioning.

    Vivian was a retired nurse to whom taking blood pressure readings was second nature. So when she was admitted to our nursing home, the Director of Nursing gave her a stethoscope, blood pressure cuff, and a clip board and Viola took on a volunteer job of recording blood pressures of all interested staff members. When she took mine, I knew I was in capable hands and I also knew, from having very consistent blood pressure readings, that she got the correct answer!

    In the early days of her stay with us, she was not only verbal, but very mobile. One evening, Viola slipped away from the home and walked a quarter of a mile down a rural road to visit the home of… perfect strangers. It wasn’t immediately apparent to them that she was a nursing home resident so they called her son on the phone. (Fortunately, at that time, she still could remember his name, which was listed in the phone book.) When they reached him, they learned that she lived in the nursing home down the road.

    It was dark and the staff was frantic. The Director of Nursing jumped in her van and rushed to the rescue. By the time she arrived to pick up Viola, these new found friends were inviting her to a wedding.

    Later, as the disease progressed, speech and mobility declined, but we never forgot how feisty, friendly, and twinkly this loveable lady was even as her mind was departing without her.

    ————

    Gloria and Butch: A Love Story
    The elegant, elderly couple had been married for more than 50 years when Alzheimer’s Disease intruded, little by little, into this intelligent man’s brain. Eventually Butch had to be placed in our nursing home, while Gloria remained in the adjacent retirement apartments and walked over to visit him daily.

    Over time, he suffered further mental decline and her physical health declined, while her mind remained sharp, so she joined him in the nursing home, where they shared a room.

    “He was my whole life,” she said of the handsome, snow-haired man with the vibrant blue eyes.

    Nonverbal and immobile, he lay in his hospital bed, where Gloria remained at his side up until the last moments of his life.

    I remember watching her as she gazed at Butch. She was holding a bacon, lettuce and tomato sandwich in one hand and I had to remind her to take a bite. She took about one bite and then refocused her gaze on the love of her life…

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