Beginnings: Aging--it Ain't for Sissies!

Beginnings: Aging--it Ain't for Sissies!: Since this Blog is, at least in part, about "Adventures." I've decided to write about our current/on-going adventure. Let me j...

Maybe it's not Patience, Maybe its Support...

This blog, and my writings, are an outlet for me. Often, as in the case of this introduction, the writing is free-flow. I don't always start with "the end in mind." The relative anonymity of having no idea who reads these ramblings, while allowing me to get some of my "issues" out of my own head, are cathartic.  I am not comfortable sharing my issues and challenges with others, in person. In real life, I'm pretty private. I don't turn to family or friends very often for solace or advice.  Even when Haime was, well, Haime, I was not completely open with him. Yes, I know, that, in itself, is another "issue." 

Since this latest chapter in our journey has begun, I've asked for prayers for patience. I pray continually for patience...some days, I have plenty, However, there are those other days when I just lose it!!! 

Those days, I berate myself, I hate the certified bitch that I am, I find myself in a dark, dark place and I hate it! My brain knows the mood swings and related symptoms that Hymie is having are just part of the disease. I know he isn't aware of his narcissism, that his laser focus on his wants, over the wants and needs of others is part of the process. Intellectually, I know that his "Rain Man" traits of repeating the same thing/question/reminder is not being done to find and cut away at my last reserve of tolerance but IT DOES!!! and my darkness descends again... 

Carolyn Wagner shared the following, and its just about perfect:

I get angry because I'm overwhelmed by my responsibilities.

I get angry because I'm terrified that I'm not doing this right.

I get angry because I feel out of control.

I get angry because I feel alone and unsupported.

This overwhelm, worry, self-doubt, and loneliness is what needs to be addressed;

the anger doesn't need to be shamed.

Unfortunately, Ms. Wagner didn't share the "how" to have the worry, self-doubt and loneliness addressed. I've realized lately that the thing I miss most about our old journey together is intimacy. Not sexual intimacy, rather, the intimacy of shared stories; the plans, hopes and dreams for the future; the ability to "talk out" and make decisions jointly. Those things are mostly gone for us. 

Thankfully, Haime still has some "lucid" times. I really try and capture and take advantage of those times and ask for his input or ideas when I recognize his lucidity. I am joyful and thankful and happy again in those times. Unfortunately, when the lucidity is gone, he often has no memory of what we discussed. That's when the loneliness is even greater.

I know there are thousands of caregivers who are going through these same things and thousands more who have already made this journey. It's not a "travel" club that anyone wants to join. As I reread everything I've written in this post to this point, I think "geez, whine much?" As I wrote in the opening, I use this forum to get some of these issues out of my head. AND, if I'm being honest, I guess I just want to bitch. This way, anyone who gets tired of my "sharing" can simply stop reading and they won't worry about hurting my feelings. 

Be well, dear reader. When you are lucky enough to find someone that you love and cherish, hold tight to all the adventures and joy and memories. Celebrate life together and hold the memories of those celebrations tight in your heart. Thank you for permitting me to "blow off some steam." 

TTFN

Lois

 

Aging--it Ain't for Sissies!

Since this Blog is, at least in part, about "Adventures." I've decided to write about our current/on-going adventure. Let me just start by saying that I love life. It has mostly given me so many gifts and joy and opportunities. 

Well, Hamie and I are living another "adventure." I'm not going to lie, this one is not fun. It's hard. It slaps me in the face ALL THE TIME, reminding me that I need to learn or find or grow some patience! It's the dementia adventure and it SUX! Living with and loving someone with dementia is in the top three hardest things you can do. 

In the beginning, the person you love is forgetful. Maybe they need help remembering someone's name or where something they use everyday, is kept. You don't really think about it because we all have lapses or "brain farts" and need reminders. However, you start to notice that the forgetfulness becomes more frequent, pervasive and widespread. Then, you notice that you are answering the same questions...again and again. Simple tasks become difficult.  Confusion is common.

You start worrying about this new normal so you start asking your partner's medical team questions. If you're lucky, you'll be taken seriously right away. If not, you'll hear things like: "I don't see what your talking about." Your partner will, by this time be good at covering for himself and offering plausible explanations.

In our case, I was initially made to feel that things were not as bad as I was describing. I questioned myself many times. As the weeks and months went on, the things I was noticing became more pronounced. Then the "decline" accelerated. It was SCARY and FRUSTRATING!!! Finally, however, his medical team agreed that NOW they saw what I had been describing for a couple of years. Even though I knew what the diagnosis was going to be, it was an initial shot to the heart to hear the word spoken aloud.

So, now the enemy had a name. One that the patient will not accept and/or claims was never mentioned. He was prescribed a medication that we were told will not stop the enemy but "may" slow its progress. Fortunately, that has been the case.

Some parts of some days, the person you've spent 30 years with, is back. They talk about some cherished memories that you share and you think, "Thank you God!" Then, you realize that all the memories are old ones. The more recent events are "fuzzy" or not remembered. However, at least there are some that make you both smile. 

Other days, you wonder how the hell you are going to hang on to your own sanity. Everything you do and say for and to your partner is questioned...and questioned...and questioned. You hear accusatory remarks and comments about how you "never used to do that..." When you answer a question, it is a trap for your partner to engage you in an argument so you start giving answers with "hmmm, what do you think"; or "I don't know"; or "I don't remember". Unfortunately, even these don't always work. I honestly don't know where the desire to "pick a fight" comes from. Maybe its an attempt to hang on, to assert some semblance of control over his world, I just know it only adds to the fear and frustration.

You realize that the person you have loved and cherished and cared for and made a wonderful life with is going a way, a little at a time. You look at them, when they don't know it and you start to grieve for the loss of the person they were. SO, you learn to cherish the remembered moments and events all the more.  If you've read this through, I ask that you whisper a prayer for all people with dementia, in all its forms. Their care givers could use a "Dear God, give them patience" too. 

No, aging AIN'T for sissies!

Lois