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The frustration. The stress. The ongoing sense of loss. The
tears that are always just on the verge but that constantly get pushed back.
with me every day. Like that thin thread hanging off the cuff of my shirt
that I can’t seem to grab ahold of and cast away.
These sensations are not new. Normally, I can set my
emotions aside and soldier through the things that need doing. Clean clothing. Find
something to watch on TV. Help into bed. Medications. Is her glass full? There’s
a sense of satisfaction in fulfilling them, simple though they may be, because
these are things I can control. These are the things I can do for her.
Tonight though, my heart hurts.
I look at my mother who is becoming more frail and confused
each day. Will this be the day she won’t or can’t get out of bed anymore? Or
the day she speaks her last coherent sentence? Will that day be tomorrow? The
uncertainty eats at my soul like battery acid.
I should feel good. She’s had a pretty good day. Lots of
interaction with the caregiver. Her appetite has even sparked a bit. And the transformation
her face made, her eyes alight almost like that of a child on Christmas
morning, when I handed her a strawberry shake. “Ohhhhhh, this is good,” she
gurgles as she awkwardly balances the straw in a curled lip, a tiny trail of pink
escaping down the corner of her mouth.
But then night falls. And with it, comes the escalating
confusion. The growing fear. The paranoia and crazy little stories. The strained efforts to find a word, the word, ANY
word to make me understand what she wants to say, her gnarled fingers flailing
frantically in the air. “I don’t know, I don’t know, I don’t know, I don’t
know,” she says incessantly and starts to beat each side of the bed surrounding
her. This is becoming a frequent state for her as she knows something isn’t
right. Hopefully, she doesn’t know just how not right it really is.
I gingerly grab an arm, pat it, speak soothingly. It takes a few
minutes, but she calms. Then she asks me weakly, “Will you hold me?” What she
really wants is to hold my hand, I realize, as her fingers cover mine, flex
over them, graze and then rub my thumb. Her hand rests there for several
minutes before she slowly lays it across her chest. A single tear finds its way
down my face. I quickly excuse myself saying I’m off to the bathroom.
Instead, I half run to my room so I can stifle the sob that
so desperately wants to escape.
Later, as she sleeps, I wait for her head to droop (the sign
of entering deeper sleep) before exiting her room. I’d spent the 30
minutes before contemplating the inevitable. It hits me like an Amtrak. I’m
going to lose my mother. Not in all the ways I already have. But in every way.
I wonder briefly how much of her I will lose before her life actually ends.
I can’t contemplate it anymore and tiptoe out.
I don’t think that I have ever felt more alone in my life as
I did an hour ago walking down the hall from her room.
But I know that eventually I will. I will, because I will be
truly alone. That's not to say I won't have other family and friends but my immediate family, the one constant person my whole life, will be gone.
I only pray that when she leaves, she goes the distance. That this
diabolical illness which has thus far spared neither of us, will allow her that
tender mercy. The idea that it won’t is too cruel to imagine -- and the one thing I haven’t yet learned
to live with.
And so, tonight, my heart hurts.
Oh MinutebyMinute . . . Such pain, compassion, and caring in your words. This is such a sh*tty disease for those who get it and totally frustrating, heartbreaking and so much more for caregivers.
Your mother is without a doubt, so fortunate to have you.
No matter how difficult the relationship with our mothers, it IS a unique one, special, and literally our tie to this existence on earth. Literally our most primal relationship.
My heart breaks when I see my mom's hands shake so badly that she needs two hands to hold a tiny saucer, or when she texts me and seems sad/upset or worse yet, confused . . . I can't fix it, and man does she drive me bat sh*t crazy, but it doesn't mean I don't have feelings about it.
And, seeing our parents decline makes us confront our own mortality and the passing of time in a profound way . . . it seem like just yesterday Mom was eavesdropping on me talking to boys on the phone after high scool, and now I'm tying her sneakers and holding her hand so she won't fall down the stairs and reminding her that yes, there is STILL soap in the bathroom which she is allowed to use.
I totally relate to your feeling of being alone after she passes. I have loads and loads of relatives in "the old country" but aside from my parents, no one else I am related to is part of my regular life.
Sending hugs and positive vibes . . . . let yourself cry if you need to, and perhaps indulge in an adult beverage or other "treat" for yourself.
Dear MinuteByMinute, your post brought so many feelings and thoughts floating back to the surface of my heart. Thank you.
I hope you & your Mother have a peaceful and loving day together.
Such lovely words you placed on my screen tonight. Thank you.
I agree with CaringMate, you are a great writer and with LivesbytheBeach: It is a primal bond like no other.
Mom, moms, mama! Mommy. How many ways can we say it and know we've said it over the years up until now and, now it's different Mooommm, c'mon mom, mom?
Like you, I dread the day, but we have to remember that she is still here now and cherish the moments, the oh so special moments, we get to share now. I'm not going to lie, I still think about it all the time of what will I do without my mom but I have to force myself to know that I have her here now and concentrate on making it good space for her.
Caregiving is so hard I lose my patience all the time with my dear old mom and I hate myself for it and I have to refocus on the here and now. This is my special time with my mom and I dont know how many days I have, I pray for more years and even in the same thought of thinking how hard this has been How can I manage and in the same breath How can I be without her?
I felt your tears MinutebyMinute, hugs to you and your beautiful heart for loving your mother so much. Stifling tears is completely there too, moms at the point where she doesn't notice I just look away completely and try to compose.
Thanks for sharing <3
Thank you for sharing, Lives. This feeling of the role reversal is really hitting hard even though I've been largely in charge for the last five or six years. It's only been though about the last 18 months where I've had to intervene so much and the last 8 months across all levels.
I think your mom is pretty lucky, too, to have you in her court!
Thank you, abc. I hope the feelings weren't too upsetting; I'm so sorry that you have to understand them so well! This illness has to be the absolute worst for not only its life-taking but all of the soul-killing it renders as well.
I'm an emotional person but have worked very hard to remain stoic the past few years as Mom's made her way into and through the varying stages. (And, as I worked hard to find help in getting her diagnosed.) While in the past year, I've occasionally afforded myself a good cry -- usually on the way into work in the morning OR late at night when the day's collective events have been too much -- but generally, I've not broken down. This weekend has really been a tough one and my iron veneer is showing a few cracks. Sharing this post was incredibly cathartic and allowed me to open the dam of emotions I've so diligently built up all year.
Thank you, Caring. I am so sorry for your loss. We expect to lose our parents. That's tough enough. I can't imagine losing a beloved mate. I wasn't lucky enough to find that one for a lifetime though I think I came close … before finally deciding I'd met "the one" and it was ME. As for my writing … it's been with me always and part of a skillset that has helped me to eke out a decent living. I appreciate your praise.
To both of you, thanks for validating that I am no less than what my mother raised me to be. I think she'd find some satisfaction in that.
Like you, I dread the day, but we have to remember that she is still here now and cherish the moments, the oh so special moments, we get to share now. I'm not going to lie, I still think about it all the time of what will I do without my mom but I have to force myself to know that I have her here now and concentrate on making it good space for her. … I pray for more years and even in the same thought of thinking how hard this has been How can I manage and in the same breath How can I be without her?
Thank you, Daisylost! It's horrible that we need it, but this site is so great because so many people like you, Livingbythebeach, and abc and Caring understand. I KNOW my mom is still in there somewhere. How? Because sometimes I still see her!!! If I can learn to navigate through at least most of the crazy, maybe I can still reach her often enough to make this journey worthwhile. I SO want her to enjoy this space. (I was able to buy a home for us last year that I wish we'd had YEARS ago so she could fully enjoy but … that wasn't in the cards.) She told me last night that she really liked her room and she liked how things were in the house and it was like a hug for my heart.
I still have those moments where I lose my patience, but I'm learning to manage it better. it's harder though lately because I have so many other stresses right now and they're all piling on. But … you, too, need to forgive yourself like I do. Caregiving is SO hard. I think it HAS to be harder than parenting. In parenting, you're trying to teach skills and push kids to be good people and to have a great life. In caregiving … you're dealing with all the baggage of a life already lived -- for good or bad, then horribly twisted by a diabolical disease, to instead usher them out to a "good" death.
And as much as I don't know how I can be without her, there's a growing part of me that, like you, wonders how much longer I can do this.
MinutebyMinute- Yes, we do care. This is truly a support group, I would be in a very different place emotionally if I hadn't found this community.
Also, I agree with you, caregiving for an elderly parent seems harder than parenting children.
Kids are so much work, but there is a sense of great hope and joy watching them grow and transform and learn skills, etc. One of my best friends has four small kids and two elderly parents with dementia, and she always tells me that dealing with her children is far easier!
An elderly parent with dementia isn't going to get any better, and caregiving for an elderly parents means in many ways flipping the script and basically *having* to stand up to and for your parents in ways you have never done before. It's uncomfortable and sad and challenging. And our parents are fighting the ways that the roles have to evolve, both out of their own patterns of behavior and also because of their own fears and vulnerabilities.
I also totally relate to what you wrote about occasionally losing your patience - the thing that annoys me the most about my parents is that I do occasionally lose my patience with them, which never has a positive outcome. I really never get impatient with anyone in my life, personally or professionally. But caregiving is hard. When my parents were here I was making my mom tea and she literally wouldn't shut up and kept firing demands at me including shouting, "She doesn't know how to make tea!" - and yes, I got visibly annoyed at them and said, "Mom, please, stop. I know how to make tea." Then she started yelling "Why are you so angry? You're so angry! You need to meditate!" -- so as we all know, these situations test us oh so much.
So be patient with YOURSELF and remind yourself, you are doing an awesome and amazing thing, and it's perfectly normal to have feelings about it, and not always positive ones.
Sending you a virtual high five, thumbs up, and a hug!
MinutebyMinute, thank you for sharing. I so felt the picture you portrayed. It was beautiful to share in your care and love and heart for your mother. I have had those moments of realization and 'hypersensitivity' and it hurts to the core.
I wondered something so I checked... pretty much everyone who responded and yourself and me are the 'only ones'. It's been something that I've been wondering for some time now as I notice how this caregiver journey affects me so much more emotionally than I see with others who have family support and joint responsibility. They share not only the care but they also have each other to lean on. Perhaps the journey as a lone caregiver is too heavy for the heart?
It's wonderful to have the support we have on here. It's actually changed my life - it's so helpful. But it's still our lone journey. And all changes, emergencies, heartbreaks, decisions etc. are ours alone. We are the only witness. And so the responsibility we feel toward our person is amplified out of proportion. We try to make the fear and confusion go away, we try to act happy and nonchalant to maintain a safe environment, we lose ourselves trying to make sure they don't feel alone. And all of that makes us feel... alone.
When they disappear a little more than usual, it grabs at something deep inside. I think it is that aloneness within us. The world shakes a little and we can't stop it. We look at them and they're not there. We're sad for them, our aloneness is triggered and it all feels too heavy. And as our emotions well up, there is no-one to lean on who is feeling the same pain. We are alone with a heart that is too heavy and there is no chance to escape to regain our balance. Even if we physically leave the room, the emotions and the responsibility and the weight comes with us.
I don't think we are meant to bear the magnitude of something like this alone. It breaks us a little. And the fact that it endures for years and years means we get broken even more as there is no chance to rest from the emotional impact. I sure don't have any answers - just musings. I am actually getting better now that my mother is in a good facility. But I'm no-where near healed and it's been 6 months. My therapist says it takes between 9 months and 2 years. Now that I'm starting to see the sun just a little, I realize that I don't have a social network anymore. All that went by the wayside with this journey. Yes, we do get broken.
Sending everyone a hug....
And you are right Minutebyminute, nobody else understands unless they are doing it.