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Grieving the Living: My Dad’s Six Years With Dementia

By Julie Fleming | May 25th, 2018

Two conflicting emotions were woven inextricably throughout the six years between my father’s Alzheimer’s diagnosis and his death: love and grief. The love was simple and clear. It’s what made me willingly put everything else on hold to care for him, what made me search for things that would bring him pleasure or comfort, what made me rejoice every time we had a special moment together.

The grief, however, was not at all simple. To this day, 10 months after his death, I am still trying to sort it out.

My dad first showed signs of dementia as early as 2008, though I was the only one who noticed something was wrong. A sharp-as-a-tack lawyer, who also held Ph.D. in chemical engineering, my father was not someone who was easily mixed up. But I noticed he started to confuse elementary concepts—I’m a lawyer, too, so it was obvious to me, but not noticeable to others. Even though I noticed he was different, I couldn’t accept that he might have Alzheimer’s. I researched until I found mild cognitive impairment, a condition that sometimes (but not always) leads to Alzheimer’s. It’s a dark day when the best hope is for MCI, but that’s what I clung to.

The author and her father.

Grief came flooding in the moment his doctor spoke these words: “After reviewing your exam, your neuropsychological tests, and the results of your spinal tap, we can say with certainty that you have Alzheimer’s disease.”

The grief of watching my dad’s day-to-day losses came quickly: seeing him unable to figure out how to unlock a car door, discovering he could no longer dial a telephone, watching as he lost interest in computers. My father loved technology—he was one of those people who carried around what was called a “portable computer” back in the ’80s, a 50-pound device that had to be transported with a luggage cart. He was one of the first lawyers in Georgia to use a computer in court. After his diagnosis, he was not even interested in turning on a computer. As the first to observe these losses, I grieved for my dad’s shrinking skill set. He hardly seemed to notice.

Even as the disease took hold, my father, always someone who had systems in place, tried to outsmart it. About a year post-diagnosis, I found an enormous stack of notecards listing names of people he should know, including my mother, who died in 2003, and directions on how to do everything from turning on the TV to making coffee.

One day, we were on vacation in Grand Teton National Park, one of my dad’s favorite places that our family had visited nearly annually for the better part of 40 years. I asked what he wanted to do. My dad turned toward me with tears in his eyes and told me that he couldn’t remember anything about the park and he didn’t know what to do, so he’d let me decide. Tears flowed from underneath my sunglasses for hours after that conversation, with grief for my dad and myself, for the loss of those past memories, for the detachment from his wife, my mother, whom I realized he no longer remembered.

As I cared for my dad, I experienced—willingly, but with regret—the loss of my own independence and the loss of professional opportunities. I stepped off the leadership track of a professional organization, and I couldn’t share my disappointment with my dad because he would have been horrified that I relinquished that long-desired role because of his health. I took him with me on my business trips for the first three years after his diagnosis before I had to eliminate almost all travel, and when my dad was admitted to home hospice following a cardiac crisis in 2014, I stopped marketing my own business and declined most new clients. I made these decisions myself, but that didn’t blunt the loss at all.

My dad and I both lost the kind of future certainty that humans believe to be part of a normal life: What will we do tomorrow, next month, next year? Suddenly everything was in doubt, and I prepared for his final Christmas three years in a row before his death in 2017. I’m an only child, and so were both of my parents, so I also lost my past. I know a great deal of family history, but I lost my opportunity to learn more with my father’s inexorable slide into dementia.

The daily losses were the hardest for me to bear, as they came with punishing frequency. I am fortunate that my friends and church family supported me throughout my dad’s dementia journey, but I often chose not to talk about the latest hole in my heart. After all, who wants one teary-eyed visit after another? I became expert at faking a rather convincing smile and laugh, but I withdrew. I once recognized over the course of a rare dinner out with friends that I had nothing to add to the conversation. I felt like the Dementia, Death, and Dying Girl. That loss of self-identity was unexpectedly painful, and when I realized that, at 47 years old, I hadn’t been out after dark in several years, I felt as if my own life was in tatters. Of course, there were shining moments: when my best friend came over to watch Downton Abbey, when I could spend a lazy, hot afternoon at the pool, or when I’d put on music and my dad and I would laugh and dance together. These (and other happy moments) were a bright light in an otherwise dark several years.

When the nurse came to talk to me the day he was admitted, I told her I was able to put my business on hold for a few months. She replied that he wouldn’t last that long. He was in home hospice for almost 33 months.

The day-to-day grief for losses that my dad and I were experiencing was deepened by my anticipation of his death. I called home hospice when my dad started having heart issues. When the nurse came to talk to me the day he was admitted, I told her I was able to put my business on hold for a few months. She replied that he wouldn’t last that long. He was in home hospice for almost 33 months. Of course, I appreciated the extra time together, but the tension of waiting for the expected sudden cardiac event along with the knowledge that, absent such an event, my beloved daddy would eventually quit eating and drinking or he would develop aspiration pneumonia—two results of forgetting how to swallow thanks to the thief Alzheimer’s. My mantra became, “Don’t make anything mean anything until it’s clear it means something,” as an effort to avoid panicking over every single change, but that was hard to live by. As he withdrew more and more, when he lost the ability to walk, when the moments of connection were fleeting and less frequent, I felt grief for his death by degrees though he was still living.

When we reached the cascade of events that I knew he couldn’t recover from—bedsores, despite best efforts to avoid them, repeated infections that his body couldn’t quite fight, and weight loss that took him to somewhere in the range of 140 pounds on a formerly 6’2” frame—that anticipatory grief turned into grief over his death. His death was as gentle as I could ever have hoped for: surrounded in love, in a quiet room, with voices raised in song and prayer. I had told my dad over the last three years that it was ok for him to leave when he was ready, that I would be ok, that my friends and my church would take care of me, but the grief of watching him take his last breaths was so strong I could hardly breathe.

What does it say that I feel relief about the death of my beloved father? It feels monstrous, but it says that I saw his suffering, that with deep empathy I felt that suffering over a period of years, and that I am grateful that he was spared more suffering.

In the nine months since my dad’s death, grief has come up at times both expected and surprising. I’ve been most surprised by the guilt that accompanies my mental review of the years I cared for him. I know that I did everything I could have for him, and yet I know that he suffered. It’s difficult not to question whether I could have done something more or better. I’ve also been surprised by the relief I feel that he’s no longer suffering. What does it say that I feel relief about the death of my beloved father? It feels monstrous, but it says that I saw his suffering, that with deep empathy I felt that suffering over a period of years, and that I am grateful that he was spared more suffering. But the guilt and the relief magnify my grief at times.

There’s also a lighter aspect to my grief, and that comes in the moments when I remember the fun we had, his joy when we were able to get in the swimming pool for the last time, or when I watched him pause his incessant walking, a symptom of Alzheimer’s, to take communion. During those rare times, I could tell that he was absolutely aware that he was touching the sacred. Grief and love coexist again when I remember those moments.

My grief is both more intense and also lighter (how that’s possible, I don’t know) when I look at my life today: I’m living in my own space now, I travel and see friends often—I was even out past midnight recently! I am building a new life, creating the way I want to live after all this time. Even though I would gladly put this beautiful new life on hold if only I could be with my dad, I know that this—this joyful living—is exactly what he would want for me. Here, after the end of my dad’s dementia journey as at the beginning, grief and love are inextricably intertwined, and so they will remain.

Julie Fleming is the founder of The Purple Sherpa, a support group for caregivers. 

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26 thoughts on “Grieving the Living: My Dad’s Six Years With Dementia

  1. Julie, I know we had many conversations about the commonalities of my mother and your father’s journeys with this horrible thief. This letter holds true to the loved ones as well as the caregivers. My mother fought for 7 yrs. my father is gong on 5yrs. He lives with us at home and I couldn’t have put in words the sentiments you shared. Thank you sweet friend! The Purple Sherpa has been such a blessing. Care and support keeps me going.

  2. Julie,
    I can empathize as I, too, experienced many of the emotions and feelings you have dealt with & still deal with. You did everything right! That’s all we can do. Yet in the moment of loss/grief, we question if there could have been more. God Bless you and your new life’s journey.

  3. My husband has been diognosed since age 58 we are now 69 it’s been along stressful journey we are now at the stage where Ray needs prompting to wash , eat , lost the ability to hold any conversation he was a head master for 21yrs and now can’t tell the time he wants to be in my sight 24/7 it’s very tiring I have lost all my friends , family don’t bother now as they think I’m so great looking after him myself I’m lost for just a chat I’ve lost myself completely .”.i want some life back although I want to take care of him myself but I’m not getting younger what happens if I get sick ..thank you for listening .x

      1. My dad was diagnosed several years ago and has been in a care home for 4 years this month. 3 weeks ago he had a fall and broke his hip. He was hospitalised for 10 days following a partial hip replacement. This was a very stressful time for myself and my 3 sister’s as he was on a surgical ward that couldn’t cater for his dementia needs. We took turns to be with him during daylight hours to help keep him calm and feed him. Something the nursing staff appreciated as they could not spare the time. He has been back at his care home for a week or so but I’m afraid his Alzheimer’s has progressed considerably since his accident. I have found myself wishing him to go to ‘sleep’. I am wracked with guilt because of this and finding it hard to sleep. What can I do to stop this cycle?

  4. I lost my mother to this horrible disease on March 2nd, 2018. I have never read something that describes my feelings more fully than this! I’m so sorry for the loss of your beloved father, & I absolutely understand the relief! Blessings to you, Denise

  5. Such a lovely read, and sorry for your loss brings my day into more reality 😢

    My own dad is suffering through vascular demen, and after a diagnosis just over 18 months ago, the acceleration of this disease has taken me by surprise. The big strong man I’ve looked up to for my entire life, is now so frail and scared lay in a hospital bed through yet another infection, drs have asked me to allow them to make him comfortable. It’s the most soul destroying decision to make, but he wouldn’t want to be lay there unsbke to feed himself or go to the bathroom.

    I don’t want to lose my dad, someone I love and cherish so much, yet I know he’s already gone in some respects.

    I love he still knows me and his face lights up when I walk in the hospital, but the car journey and nights spent thinking of him make me so upset, tears roll down my face at any time of the day I do not know what I’m to do any more, I try so hard to be brave and strong for him.

    Taking it day by day

  6. My mom just passed two weeks ago, and I found these stories very helpful. There are so many amazing people in this world. Unfortunately, I am not one of them. I had an opportunity to move in with my mother when we first got a diagnosis, but my husband was out of work and not in good health. In a year or so, we convinced my mother to move to an apartment in an Independent Living facility, and this worked well for another couple years. I moved closer, but still had to visit mainly on weekends with the hour and a half drive each way. When it became clear that she needed more assistance, we once again helped her move. I was fearful that I couldn’t provide the medical care she needed, but I could have learned how to manage her diabetes. She asked me several times to take her back to her apartment or get her out of there.

    I am very sorry for the losses so many of you have suffered, but you do not have to suffer the loss of self-respect. You made such loving choices all along.

  7. Thank you for sharing this – thank you. Sometimes this road feels lonely, even with support from family. The decisions and daily worry can feel so overwhelming.

    1. Thank you for sharing your story.
      My experience was very similar and although it’s been 3 years, I still cannot seem to get on with creating a new life.
      It changed me forever. Maybe writing this down will help. Xoxo, n.

  8. I’m so sorry for your loss! I’m the baby in the family and helping care for my Dad who has dimentia and is now in the moderate to sever stages! I have decided to not work and take care of my Dad every morning with my Daughter who is just shy of 2 years old to halo relieve my Mom. It’s been such a heart wrenching time in my life since I feel I’m am the closest to my Dad. I never realized how simple things in life we take advantage of everyday until seeing this horrible disease. It robs us until God says ok now all you have is me!
    MY prayers and thoughts go out to you as I know I will soon feel this pain s well but also see he won’t have to suffer.. God bless anyone care taken and going through this.

  9. Thank you for sharing your thoughts. Much of what you said I have felt as well. It has been four months since I lost mom and I am an only child. I am not yet living a joyful life – and hope this will change some day.

  10. I am so angry! I’m angry at the loss of my independence, I am angry that I am trying to work full time and take care of my Dad. I am angry that at 60 years old I have to put everything I was working towards on hold. Then I feel ashamed and selfish because I am angry. The family that looked to my Dad for answers to every problem has disappeared. No one calls, no one comes to see him or me. Everyday I feel SMOTHERED by the same routine. Get up..go to work, rush home so the caregiver can leave fix dinner, try to engage my Dad in some kind of conversation. Dispense medication. Get him to bed. I go to bed, and then up and down all night because he is wandering. No one seems to realize that I am losing my Dad, but I get a front row seat while the rest of my family asks the obligatory “how is he” on the rare calls I get. Then when I start telling them, all the sudden they have to get off the phone. I feel petty and selfish because I don’t feel “LUCKY” to have this time with my Dad as so many people have pointed out. I want to tell them to come on over and watch my parent turn into my child and see how lucky you think I am. Wow…so much anger. I am not coping well at all.

    1. Hi Roberta. I’m having the same feelings of resentment and anger, so I understand completely. Then I feel guilty too because I resent and am angry. So, I just wanted you to know I completely understand.

    2. I hear your cry! I had the same experience being the only child in town. At one point my sister said, “so put them in a home and move to another state!” It’s taken me years to forgive that. Vent to anyone who can relate, the rest will not understand the pressure you are under. Hugs. N

  11. This journey is one I’m on now with my mother. She is the fifth person with dementia for whom I have helped provide care. However, in the past she & I faced it together. While that’s true now, she has little remaining awareness of her loss.

    Of course that is good, but I struggle to be upbeat and positive and fun for her to be around when I am grieving her losses even as I celebrate good times we can still have – laughing at the dog, watching a bird in flight, celebrating Spring flowers from bulbs we once planted.

    We’re five years post-diagnosis, and I think that even worse than seeing so much (although not all!) of her preferences and personality fade away is not having any sense of an end date. I pray I can keep her happy and safe and feeling as loved as she is until the end. No regrets. Nothing held back for tomorrow. Only making each day our best day possible to the best of my limited ability.

    Heaven help all of us – family, friends, support systems built from so many components – and most of all our parents or partners or friends with dementia. Day by day, we must just keep doing the best we can.

    My support and respect and best wishes – and a hug if I could send it – go to Julie and all of our fellow caregivers.

    My family is far away, but they help as they can. My neighbors mow my lawn. My friends fix food but most of all show up. My coworkers and workplace are supportive. And it’s still so hard. So lonely. And yet it’s what my mom would do for me.

    I will be there for her until the end, and along the path that remains, we’ll wrangle trips to the beach, and gooey cookies, and as much laughter as we can make.

    Good luck and fair travels, everyone. Just do your best, and then no regrets. Not perfection; our moms/dads/spouses wouldn’t want us to disappear for them. We have to LIVE for them and to bring the continued joy of living to them as best we can.

    1. I’m new to these experiences and feel very scared – it does help reading other people’s stories but at the same time terrifies me as just don’t know what’s coming.

  12. I’m so sorry to anyone who is going through this at the moment. We lost my Dad 2 days ago and it’s an unbearable pain. We knew it was coming and knew he couldn’t carry on the way he was but the loss is just heartbreaking. My heart goes out to you all it’s such a cruel illness just cherish every moment you have together.

    1. So very sorry for your loss, Claire. My family is years into this process. My sweet Daddy is in a nursing home now, pretty much nonverbal. He is heavily medicated to keep him from being aggressive towards those around him (family & caregivers). I feel as though we are in the most horrible holding pattern, ghoulishly waiting for him to finally be at peace. As many have said, the loved one we know has already gone, their body just hasn’t gotten the memo. He sleeps probably 18-20 hours a day, eats very little & has no control over his bodily functions. It is wrong to pray for his release? I feel so guilty just thinking this.

  13. I cried reading your article and the comments. We all feel so alone. Dad moved into a Alzheimer’s unit yesterday. I don’t want to leave him there but we have too and I know we are lucky mom can afford this. The guilt I have is not shared by my sister and she doesn’t get why I want to be there daily. My mom is exhausted. I feel the burden to make sure he is being taken care of. My mom said she gets it. She was like that with her dad. My family is sick of me crying. I want to shut off my feelings.

  14. Although you wrote this awhile ago, I just read it tonight and it was helpful to me. Everything you describe is exactly how I feel with my dad. Watching the person who once had every answer now depend on me to tell him the answers. And I find joy in his moments of clarity, but then he will say something that makes it so pointedly clear that he is leaving reality and it is heart breaking. Thank you for sharing. It is a hard thing to experience missing someone while they are still here and when you described him no longer recalling your memories of family vacation I thought…But he does now. God has a hand in all of this and somehow in the bigger picture the dance of creating memories, losing them, and regaining them in heaven is a part of this beautiful life. God bless you.

  15. Julie, thank you so much for your insightful and poignantly written story. I have to say, I cried through most of it, for you, me, and all those who are, or will be dealing and struggling with a loved one with this “insidious” disease.

  16. Hello, I’m writing because I want to help my boyfriend who is experiencing the emotional struggle of his mother, who lives with us, having dementia. We are coming up on a year in December when she was diagnosed even though it was noticed long before then that something was wrong. I see him struggle everyday. Today he is having a bad day because of what he is going through with her, the lost of his father in 2010 from a stroke and his brother at the age of 17 from a heart condition. I have read all of your post and admire how strong each and everyone of you are. My heart is torn because I can’t take away his pain. He is 31 and I am 32 and have yet to live our lives. I’m afraid. Thank you all for your post. I pray for you all and for my boyfriend and his mother.

  17. Thank you so much for sharing, I am also feeling that I am losing my father while he is still here with us. I also feel guilty and want to be there for him every time I can. I regret not talking more to him while he was still himself, I want to have hope but I know he will not get better.

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