The Long Goodbye

Carolyn4255

I have been keeping a journal, at the suggestion of my doctor. She also suggested that I share some or all of my journal entries to anybody I think might benefit or gain some insight into my experience. So I thought I would share today's journal entry with all of you. I feel that you will definitely relate.

MARCH 8, 2024: The Long Goodbye

My mother died in December 2022. My father died eight months later in August 2023. Both of them were in their late 80s when they died. I grieved, and then my grief eased to sadness, and now I just hold them in my memories. This is the way saying goodbye is supposed to be. 

Or so I thought.

My husband is dying. His self and spirit are all but gone. Dementia is killing him. I profoundly grieve this slow, painstaking loss of my too-young-to-die, 70-year-old husband. 

I take care of what is left of him.  I keep him comfortable, clean, and nourished. I try to keep him from being too isolated. When I see a rare smile or hear a rare chuckle from him, my heart soars. Somewhere inside that dying brain are embers of his spirit that still linger. 

They call it “The Long Goodbye”. Years of watching somebody you love disappear, while their heart still beats. Years of loneliness as you care for the shell that once was your soulmate.

You grieve, but instead of the grief easing into sadness, and then acceptance, the grief lingers like a dark cloud overhead that never lifts. You go about your days in spite of the grief, soldiering on as you are expected to do.  This can go on for years, as this disease is rarely quick.

None of us in this situation wants to live like this. We don’t want to grieve endlessly for years on end. But grief is a fickle beast. It’s very difficult to overcome. 

Besides my primary goal of keeping my husband safe and well (as well as he can be under the circumstances), I have a goal of moving through my grief and ultimately getting to acceptance. I think part of what makes it so hard to move beyond the grief is a sense of “survivor’s guilt”. I mean, why should I be okay when my husband is not? Shouldn’t I remain in solidarity with him by suffering along with him?

Of course, this is irrational and unsustainable. Not only would my husband not want me to suffer, but if I don’t get myself in a better place I won’t be able to care for him. As my doctor said, “An empty plate cannot nourish”. 

So as I say this long goodbye to my husband, I must also say goodbye to my grief. I cannot sustain this level of grief for years on end. I must make peace with all of this. But making peace with it does not make it okay. It will NEVER be okay.  

annie51

Thank you for sharing this. I feel so much the same way about my DH but still have trouble getting to acceptance instead of grief, especially as the progression moves along. I need to adapt better as I see things getting worse. You learn as you go, I guess, to figure out what works and what doesn't.

My mother got dementia in her 90's...for my DH at this stage at 76 years old seems so unfair. But then I remember those who must deal with this at even younger ages and I feel somewhat lucky that I had as many good years as I did with him before I had to begin the long goodbye.

Kat63

Carolyn4255, thank you for sharing your journal for today. These could be my words also (if I could express them as well) about my DH and our journey together, now in our 9th year of our “long goodbye” and our 40th year together. These last few years have been particularly hard. I think of it like the Garth Brooks song, The Dance. “I could have missed the pain. But I’d have had to miss the dance. “

SSHarkey

Exactly! My DH was diagnosed 8 years ago. Looking back I can see via hindsight he began having symptoms two years prior to that. So we have been at it now 10 years. In that time I’ve been able to move into the acceptance phase. We’re more like roommates, but with all the responsibilities on me. Nevertheless, every new symptom hits me between the eyes. Painful grief, that slowly ebbs away as the behavior becomes the norm. That slow up and down of emotions over time.

RickM

Hello Carolyn. Thank you for sharing your thoughts. They are very similar to my own as my wife is in a similar state. I had moved her to MC almost a year ago and now that she is near the end of her dementia journey I think about bringing her home for what looks like will be the “long goodbye”. But I don’t think I can endure it emotionally. I admire you being able to keep your husband close.

I had been visiting my wife daily for most of her time in MC until January when Covid and some travel reduced the frequency of my visits. The grief persists but the guilt is subsiding.

Since she is now mostly non-responsive I’m starting to wonder if she is starting her next journey which will be on her own. As will be my continued journey here on earth. Could she be letting me know it’s time to prepare for a life apart?

Ed1937

"It will NEVER be okay." I can't tell you how many times I've said that. We lost a son in 1998. The grieving is now gone, but it will NEVER be okay. I'm still dealing with the loss of my wife in June 2022, and I'm not sure the grieving is over yet. It will be, but once again it will NEVER be okay. And the most recent, the loss of my daughter, last month, will NEVER be okay.

Thanks for sharing this. You have a way of writing.

midge333

Thank you for sharing!

Jeannielou

Thank you for sharing. I try to journal but it is more of a record than a journal as you so eloquently produce. Every day as I write I say to myself "I am so ill equipped to do this" but I know it will only get worse and God will be beside me all the way and give me the tools I need to carry on.

TyroneSlothrop

https://alzconnected.org/discussion/68462/the-long-goodbye

Carolyn 4255,

Beautifully written! Please share more if you will.

Thanks,

Tyrone

mrahope

Thank you so much for sharing this. I do understand how hard this journey is. I'm in (I think) year 5 since the first diagnosis of MCI. I don't know if other caregivers share this, but (and I think maybe it's because of my DH's behavior), I feel a lot of anger, too, not just grief. I had just fully retired in 2019 and by end of that year my DH was showing behaviors that "weren't right". He would get angry and blame me for all sorts of things. I just feel beaten up and cheated out of any retirement at all. I seem to alternate between anger and sadness. In my case I think the grief is waiting around a corner for me until I get enough peace to feel it. I find myself tearing up at odd moments. This "Long Goodbye" seems to be a "stew" of unpleasant emotions that have to be kept under control as they upset our LOs. Sigh.

White Crane

Thank you for sharing your journal with us.

Crushed

another veteran here

15 years since first symptoms at 57

14 years since MCI Diagnosis

12 years since Alzheimer's diagnosis

7 years since Memory care placement

6 years since she lost all knowledge of me or anyone else. .

3 years since she went into a wheelchair

She will be 72 in May

I try to have a sort of life, I try to say I can move on. I see her in person once a week and every weekday on facetime But there is nothing to see.

Crushed

Lgb35

thank you for sharing. You have a gift at writing. Maybe at some point you should think about publishing a book. Seriously! The way you articulate what so many can relate to would be beneficial to others starting this journey❤️

Carolyn4255

Thank you for your kind words, Lgb35.

Openloc

https://alzconnected.org/discussion/comment/201469#Comment_201469

I absolutely can relate, though I'm at the very beginning... no actual diagnosis yet, as my DH thinks I'm greatly exaggerating his symptoms of memory loss, confusion, and communication problems. How do I"supportively" talk to him about going to a Dr for help and support?