INTERVIEWING MY MOM WITH ALZHEIMER'S
"Mom, what does it feel like not to be able to remember something"? She answered, "it's not always so bad not to remember everything". Wow, I thought as she spoke these words. Several years ago I had presented a similar question to her, for I often wondered what it must be like. I too sometimes forget some simple things, and for a second I think, do I also have the beginnings of dementia? I quickly kid around about it, although deep inside the question still remains.
I have no fear asking her any questions, for I know that it will not upset her. Immediately after I ask her something, it disappears from her memory. Her answer to this same question, several years ago was quite touching. Mom had said "I know that whatever has happened yesterday to me had to be nice, whether I can remember it or not".
Back to the present, I continue with," mom is all this scary to you"? Her quick reply is "no it's not scary because if you cannot remember something, you just don't remember it". With such wisdom mom was able to answer me so easily. She then started to reminisce about her own mother and growing up in Williamsburg and Coney Island.
"Mom do you remember your mother's name. "Of course, it was Pauline Schnitzer". "Mom, what's your name"? "Ruth Schnitzer", and "what was your father's name"? She simply says, "I cannot remember". With some surprise in my voice, I say his name was "Louie." My own father passed away seventeen years ago, yet I wonder if she knows his name. She has to, it's my dad and they were married for almost fifty years. She does not remember.
"Mom how many brother's or sister's do you have"? "I have both a brother and a sister". Wrong again. My mom had only one younger brother who died from Alzheimer's six years ago. I decided to lighten up and move away from this conversation.
As we continue to speak I did not understand what she was trying to say, so I responded with "mom I do not understand what you just said". She must have felt a little frustrated for she answered, "if I was speaking French or Spanish then you could not understand me". "You are absolutely correct", and we both started to giggle like two teenage girls. I was happy, because between some things she said there seemed to be quite a few times that she was lucid. I was able to fantasize for several moments that she did not have Alzheimer's.
I have been back home for almost a week now, and each day that I speak to my mom she seems to have some recollection that I was there. She cannot really express this, although she has questioned me everyday, to when I will be coming to visit . Now when I exit from her home, I can no longer have my real goodbyes, for in the past she has gotten quite upset. So when I leave I simply say, "mom I'll see you later".
Today my mom shared with a light, upbeat voice that when she woke up she was looking all over her home for me, and could not find me. For a moment it made my heart sink. It saddened me that we lived so far apart, yet there was a sound of joy that came from her voice. I knew that she was feeling happy.
Later in the day I phoned my mom again, just to hear her sweet voice. Her caregiver Trudy said that after I hung up earlier , my mom had been going around her home once again calling my name. Her voice shouted, "Lisa, Lisa, are you here". Hearing this made my heart ache. Do I jump on a plane and run back to her ? It's been exactly one week since I was there. Of course I cannot do that. As I hung up the phone somehow it left me with a piece of my heart broken in two. For the rest of day I kept hearing Janis Joplin singing,"take a little piece of my heart".
I often wonder how this little lady who stands only 4 feet ten inches off the ground, can melt my heart each day in such a way that I cannot contain my love for her. It seems to overflow with abundance . Although I know that my mom cannot remember anything, and may not always be able to express herself and all her feelings, I am still left with some comfort. Deep in my heart I do feel that she is not suffering and is relatively happy. I truly believe that it is the families that are the ones who suffer the most. Either way Alzheimer's is a cruel disease that eventually takes ones life.
For me, because of my mom I have committed myself to spreading awareness about Alzheimer's and only hope that what I write can help other families find some comfort . I wish all of you much love and I hope you know that I truly care and do understand.
Fact-Every 68 Seconds Someone is diagnosed with Alzheimer's.
lisa, i found a link to your blog on the alzheimer's assoc southwest missouri facebook page. i have not read all of your post but was touched by this one. i also have a blog that chronicles mine and my husbands journey together. he was diagnosed with younger onset alzheimer's in dec of 2011. we are still in the early stages and doing what we can to prepare for what is coming up in later years. please stop by and visit my blog: http://forbetterforworsetogether.blogspot.com/
ReplyDeletemonica thomas
Hi Monica,its nice to meet you. I wish that it was under different circumstances. I did look at your blog and it must be so freeing for you to write about your journey with David your husband. I see how you found me and I hope that you have also joined a support group at you local Alz Assoc. I go to one that meets 2x's a month. We laugh, we cry and most of all we all understand. You did not leave me you email address so this was the only way to reach you. I hope you get to read this. Hugs to you & David, Lisa
ReplyDeleteLisa, I know how you feel about your heart feeling broken. I am so happy for you though that you have such a sweet relationship with your mom in these difficult times. My mother became angry and unpleasant to be around in the last year.
ReplyDeleteNow that Mom is gone (it's been just a little over a month) I miss her physical presence very much. I found a voice mail from her on my cell phone a couple of weeks ago where she sounded like my "real" mom and not "dementia" mom. Thankfully I saved it because the very next day after I had it recorded it was auto-deleted from my voicemail. I put it on YouTube so I could put it in my blog which is where it is now.
I hope you will always have your sweet memories of your mom and I'm so sorry that this horrible disease is taking her from you.
Monica, I will take a look at your blog. I feel awful for you that you are losing your husband this way and so young. Hang in there. And Lisa is right, if you can get into a local support group I'd highly recommend it. I went to one once a month since 2007 and it taught me so much and helped in more ways than I can imagine.
I also blog about my mother if you'd like to take a look. http://dabalcom.blogspot.com
Mom died on August 8 and while I miss her so much I wouldn't want her to continue on the way she was.
Love to you both.
Anne Balcom