Loved Ones Are Not Always Helpful
Daily struggles with life's moments,
Experiencing voids in time,
Moments lost forever.
Even when reminded about the vent,
No memory exists...
Total vacuums of time
Inwardly searched for naught.
Always wishing I could catch the thought.
I had occasion to spend a few days with family-siblings, cousins, an uncle, nephews, nieces, my daughter, and granddaughter-during the days of my father's viewing and funeral. I delivered the eulogy on behalf of my siblings so I had to search into our past a little. I had to ask my brothers and sister for some ideas to add to what I myself remembered and to check for accuracy. It went well, my eulogy, and I did what I couldn't have done at my mother's funeral. I could never have spoken then for she and I were just too close and the loss was just too great. But, in the meantime, I had many conversations with family members which often started with "Do you remember...." I can honestly say that I did remember much of the long time past. However, much of what has happened in the past twenty years has become lost. Is that normal? Does it indicate that I was losing my memory much sooner than I thought? Or have I just unconsciously forgotten much of the bad that has happened during those years?
For instance, my daughter said, "You remember so and so. He lived with us for awhile."
"No, I don't remember so and so," I answered. How can that be? Supposedly he was a part of my household. Is my lack of memory a combination of repression AND dementia? Or does it matter?
I am digressing... Let's get back to the point at hand. Family gatherings will bring out many "Do you remember" stories from your loved ones. You have a choice: shake your head YES as though you remember and smile...OR say NO, I don't remember, which then may take the loved one into a tirade of
"What? How could you NOT remember that???" I've been there, done that and had that very thing happen over and over. Anymore, I just shake my head YES and pretend to remember. It's easier, and sometimes I can listen to the story and little pieces begin to connect, and I can dredge up some bits of memory from the past. I'm not saying I'm right about pretending to remember, but it works for me. It causes less embarrassment. I don't feel like reminding everyone all the time that I have short term memory loss. I choose NOT to put dementia into the forefront.
It is not ME; I am not IT. Perhaps I have finally become comfortable enough with having dementia that I don't feel I have to explain myself. Perhaps I choose not to bring it up because I don't WANT it to have such an important impact on my life. And sometimes, maybe, I don't ‘fess up to not remembering because I don't want to be put on the spot! Our loved ones don't mean to be hurtful (probably); they usually just don't remember about the dementia and its effects.
Speaking of loved ones, I have one more issue to discuss: people who mess with our minds by making little "jokes". I am going to tell on my husband-you know, that sweet, wonderful prince of a man I married five years ago. He really IS supportive-MOST of the time. Recently, though, I have almost wanted to strangle him for messing with my mind. You may come across the same issue. Example. He picks me up after Weight Watchers, I look at him and his head seems "cleaner", so I say to him, "Did you get your hair cut while you were waiting for me?" He answers NO. I ask if he got it cut last night on his way home from work. He says NO, still with a straight face. By this time, I am doubting my memory AND sanity, screwing my face all up in exasperation. Finally, he confesses that YES, he did get his haircut while I was in my meeting. SOOO, I say, "I am NOT going crazy!" What follows is a discussion of how his "little joking around" makes me feel, how I begin to doubt my self and my ability to remember, etc. It is NOT the first time we've had this discussion.
"You know I have a problem with my memory and you just frustrate me when you play around with my mind like this!" I say. He apologizes and says he forgets I have a memory problem...
Not a half hour later, he pulls the same thing again. I check in my wallet to see how much money I have left. "Forty-two dollars," I tell him.
"WHAT? OUTTA THE FIVE HUNDRED I GAVE YOU?" my husband answers. Now, I know immediately that he's lying; he would NEVER have given me that much to take with me this past weekend, so I've caught him in the lie, but I still don't appreciate the type of joking around.
"There you go again, tryin' to mess with my mind!" I retort. Believe me when I say, I didn't stop there. I told him he HAD TO STOP trying to be funny in that way. He had to be concrete and truthful. I can accept no less from him...
Well, we'll keep working on this little problem. The most important thing is that we keep open communication going about this and any other area of difficulty. I suggest the same to you, whether you are the dementia sufferer or the caregiver.
Be open and honest. Communicate. Take your loved one to task, if you have to. We who have dementia do deserve to be treated in a way which will make us feel good. Don't accept less!!!