I probably composed a 2,000-word post in my head earlier this evening as I drove home in tears – and now I’m having a hard time putting together a sentence! My eyes are burning, I’m exhausted, nauseous, and I wish I could run off to a deserted island until February.
It was this time last year that really marked the final decline for Mom. We’d hit a low point in September, but then she came back just a bit – enough to give us some hope. That, however, didn’t last long.
Detour Ahead – or Not
Over the past couple of months, I’ve tried so hard not to get weighed down with sad memories and heartache. Now that November is here I think it’s catching up with me. Each day, I find my thoughts wandering to last year at this time, and to be honest, I’m not sure that continuing to push the thoughts away is the right thing to do.
All of the grief experts seem to agree that the only way to heal is to walk through the pain; they say continued attempts at taking detours will fail. I imagine it’s true; after all, it makes sense, doesn’t it? The more you try not to think about something, the more prevalent the thoughts become.
Strength, Weakness, Life, and Purpose
I want so badly to be that strong, in control, (mostly) put together person that others admire, but damn sometimes it’s hard – hell, sometimes it’s downright impossible. Today, despite my best efforts, a major meltdown ensued.
There are times when I get annoyed with myself for not being “over it” by now, but in thinking about that today I realized something.
Mom was sick for almost ten years and had most assuredly started to decline even earlier. That’s a long time to live with the fear, uncertainty, and stress that come with this disease. It’s years and years of living on edge and constantly walking on eggshells. It’s all consuming… so, no – 11 months after her passing, it doesn’t all just fade away. I guess I’m still trying to figure out what my life is, post-Alzheimer’s.
Now more than ever, having a purpose is vital to me. The status quo just doesn’t cut it.
A Long Road
Truthfully, I don’t miss Mom any less; in fact, I think I probably miss her more now than ever. It occurred to me that I don’t even remember the last time I was able to sit and have a real conversation with her.
For my entire adult life, she was always the first person I’d call when something great happened – or when something was wrong. Whatever it was, she was there – to celebrate, to console, or to provide words of wisdom. And then as I approached my late 30’s, she wasn’t there anymore, at least not in that sense – she ceased to be my rock and I gradually became hers… or tried my best to be.
That’s what makes dementia such a unique and particularly cruel disease; you lose them over and over and over again. And oddly, you’re fooled into thinking when the end comes, you’ll be fine because you’ve been grieving for years.
One day you realize that was all a giant fallacy. The new grief – the “final” grief – is fresh and real, and it leaves you raw for a very long time.
A Word on Sympathy
In short – I don’t want any. Sympathy, that is.
One thing I’ve found in the past year or so is that the caregiving community is much larger than I could have ever fathomed. We’re a club of sorts – as I like to say, it’s a club we didn’t necessarily seek out, but here we are. I write for myself and I share in the hope that someone may read my story and feel a little less alone…
At the end of the day, that’s what it’s all about.
“And then as I approached my late 30’s, she wasn’t there anymore, at least not in that sense – she ceased to be my rock and I gradually became hers… or tried my best to be” those could not be truer words. I still have my mom, she lives in a memory facility and this will be the first Holiday with her in a facility and not have her at the dinner table with us. She was my rock for everything and we could just talk about nonsense. Now I’m happy that she almost always remembers to sit on the toilet to pee. I have 2 daughters and I can tell she loves them but she is now unable to show interest in them, and that may be the worst becaause I know she would have been an amazing grandmother! And thank god there are others in this “club” we belong to. All stories help just a little…..
thank you 🙂
Ann Napoletan said:
Thanks so much for your comment, Lauren… I’m sorry you’re dealing with all of this. The holidays are very difficult – my mom was always a the center of our Thanksgiving and Christmas traditions… when that was no longer the case, it just didn’t feel like the holidays. There was (and is) a huge void.
Enjoy the special moments you have left with your mom and hang in there over the the next couple of months. Try to remember that she would want you to make the best of the holidays for your girls.
I do agree – thank god we all have each other… Sending you many blessings…
Going Gentle Into That Good Night said:
Ann, I think you probably summarized this experience in a way that I can relate to. I keep thinking and trying to be over “it,” but I miss my Mama. Thank you, my friend.
Ann Napoletan said:
You know, as much as I would NEVER want anyone else to feel this way, there’s such comfort in knowing I’m not the only one who feels – or has ever felt – it. Many hugs to you, my friend….
Reblogged this on Going Gentle Into That Good Night and commented:
I read Ann’s post and it was if her words were coming out of my mouth. The journey through dementias and Alzheimer’s Disease with our loved ones is unique, challenging, long, and, at times, extremely difficult.
So too is the journey through the grieving process after they’re gone.
Ann Napoletan said:
Thank you, Sandra… xo
Hi, Can I admit that I’m scared? My Momma is in the end stages of this illness. Eating about a cup of pureed food a day. What you said is so true – I’ve been grieving for a couple of years and as we get closer to the end stages this is getting scarier. What am I afraid of exactly? That’s just it … I don’t know… and I’m not sure that knowing that more raw feelings are headed my way isn’t … well, scary. I”m so sorry for your loss – sympathy yes. But more than that, sending thoughts and love your way. Arlene – Mommanme.blogspot.com
Ann Napoletan said:
Oh my goodness, Arlene… yes, you can admit that you’re scared. That’s like admitting you’re human. It is such a scary disease full of unknowns.
When my mom was in hospice (in-patient) at the very end, I would walk up to the chapel to pray. There were times when I didn’t know whether to pray for God to take her so she would be free of pain – or pray to be able to hang onto her forever. I knew the latter was selfish, but I didn’t want to let her go – ever. Not sure I’ve ever been so conflicted about anything in my life.
Our thoughts can be (and often are) all over the place – it’s the most intense rollercoaster ride there is – I’m sure of it.
I hope reading this post didn’t upset or frighten you more… You know, everyone is different. I’ve heard people say that the moment their loved one passed, they felt a sense of relief and even joy in knowing they were whole again. Other people fall somewhere in between.
I don’t want anyone to think I’m in a state of deep sadness all the time. A certain degree of sadness is always there, but life does go on. I think of her many, many times each day. But these rushes of intense emotion – like the day I wrote about here – seem to come out of nowhere. For me, the only way to deal with them is to allow them to happen… I cried so much the other night that my eyes are still puffy. But the point is, I needed that release…
What I’ve learned through this whole experience is that I never know how I’ll feel or react to any given situation until the moment comes…
As much as you can, enjoy these days with her. I know how difficult it is, but someday, you really will look back and treasure those special moments.
Many hugs to you, Arlene…