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
