The Beginning, The Middle, My Now… (repost)

Portsmouth, NH

11/1/19 ~ With November being National Alzheimer’s Disease Awareness and National Family Caregivers Month I wanted to share this post that I originally wrote a few years after my Mom had passed, as I say the beginning of my new normal. Seven years into this journey and I’m still raw, yet still learning, and for those who are on this walk of caregiving or have been there, my wish is that by sharing our powerful and personal stories, we can make a difference and create solutions together. (Original post 2014).

As I pondered on what I wanted to write for this post, the title is appropriate to my thought process. Do I discuss where I was as a caregiver (i.e. the beginning), the middle of that journey or where I am now and you know what I’ll give a little of all.

You see I am on the other side of caregiving, as my mother passed two years ago. I miss my mom terribly and would give anything to have her back, even those crazy, tough and teary caregiving days. Some people who are in the midst of it may say “I understand you’re missing your mom, but the caregiving part too?!”

Yep that part too! In my posts I often talked about the tearful nights, mom’s behavior changes, challenges with getting financial assistance for a person who wasn’t rich or poor, lack of sleep and sadness, as I navigated new territory wondering when I’d have time to move forward in my life, because doing anything else other than caring for her and giving her 110% felt like a guilty thing to do. It seemed there was always some obstacle to tackle.  As with anything new, I learned how to manage that life. Caring for mom, making sure she was on a daily routine or making sure that I was on a daily routine rather, keeping up with errands, and taking her to doctor’s appointments became my norm, but also learning how to meet her at her level was a huge step for me.

I often blog about meeting a person with Alzheimer’s at their level because once this really clicks for you, it does give “you” the caregiver a better sense of control. It makes the role easier because you learn not to sweat the small stuff, you learn to make better decisions because you truly realize that no matter how much you want the former person you knew it’s not going to be. You have to find ways to present decisions to them easily that will make them feel engaged and that they matter. Basically you make the decisions on the decisions they are going to or going to try to make.

Trying days yes, but now that I’m on the other side of the coin so to speak, it’s been challenging, but in a different way. Two years later and I still cry. I cry for my mother and my father. He didn’t have Alzheimer’s, but it’s the emptiness of having both parent’s gone and I struggle with my next. Funny isn’t it, when I was a caregiver, I knew all of the things that I wanted to do when I was able to get mom secure some place and now that I am no longer a caregiver it’s all escaped me. I have new challenges and another new mindset to conquer.

When I see something or do something that I want to share with my mother, it hurts my heart that she is no longer around to share in those things with me. Holidays aren’t the same. I felt so lost that first Mother’s Day. I tried to get cards for friends and family members and couldn’t do it. Stores where’d I go to buy items for mom gave me major anxiety when I’d go in after she passed. Who knew? No one prepares you for that! I knew there would be a great loss, but I never expected not being able to handle going into a store.

Caring for a loved one with Alzheimer’s is very much like the quote from Forest Gump, “…it’s like a box of chocolate, you never know what you’re going to get”. You get mood swings, the eating challenges, the bathing challenges, and for some, the wandering challenges (thankful that I didn’t), but you also get times when funny things are said, you learn how to grocery shop quickly, and to think very quickly on your feet.

When you’re in the midst of it really is the unknown path. I turned to blogging because I am a writer. I wanted to give a voice to my experience, once I got over feelings of embarrassment and not wanting to relive tough moments with mom, with learning financial systems and so on, but I knew there was a bigger picture, my experiences could help the next person.

I didn’t know where that would lead me, I just hoped someone would read my posts. And someone did and eventually my voice was becoming a bigger voice that started out for Alzheimer’s and is growing to be a big voice for the unsung hero…caregivers.

I don’t know my next, I have a list that I’m ready to conquer. I just hope that I can make a difference in someone else’s life.

To learn about my beginning, click here.

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