Honestly answer the question, “How are you?” in relation to you or a loved one’s condition. If you’re not doing well, what would you say to yourself to help you get through this moment?
I was at the dentist the other day for my own routine cleaning and teeth maintenance, and though I had put it off for some time, I decided that I should probably get my mother into the dentist. There’s significance to this, earlier this year, my mother was diagnosed with Frontal Temporal Degenerative Dementia with primary progressive aphasia, which means that although her behavioral demeanor has remained mostly in tack, her cognitive abilities have begun to dwindle. I am now her primary caregiver, and as of earlier this year, my mother has moved into our already crowded home (husband, wife with 4 children). Nowadays I am often found running around the house either changing a diaper, helping our older children with various task including 4-H and Boy Scout projects, and more often than not, switching around my mother’s backwards shirt or assisting her in some other fashion. To say that most days I go to sleep exhausted would be an understatement. To say that I still cannot get adequate sleep on most nights would also be an understatement. My life is consumed with being a caregiver, and this often times leaves little to no time for me. The time that I do have for myself is often spent working on my own college school work, or ducking away in my husband’s barn for some alone time with him. It is not uncommon for people to ask “how I am doing” or “how my mother is doing”. In the beginning, I rarely answered this question honestly. Nowadays, the question still seems loaded, but I try to be honest when I answer it. Truth is, I do not know when I will honestly be able to answer the “how you are” question in relation to my mother’s disease with “things are going well.”
The other day, my mother began to cry. I believe this was because she comprehends that she is becoming more and dependent on someone else. All I could do is look at her and tell her that I would be there for her through all of her disease, a disease that has struck my mother in her early fifties. Truth is, it tears me apart to see a once independent woman, the soul breadwinner of our home reduced to uncertainty and child like demeanor. Truth is I am saddened by the thought that there will come a time when my mother doesn’t recognize me. I am angered by the fact that this burden is on my husband and four children. I get frustrated with having to take two vehicles if we want to go someone as a family. It is no fun to deal with my mother’s unexplained sadness, tears, and hugs (which she never really did much of before). There are days when nothing gets me though the day, when nothing seems to get me though the moments of despair. It is easier to deal with the frustration because I remind myself that this is not my mother’s fault. Given the opportunity, she would buckle her own seat belt in the car, she would handle her own doctor’s appointments, handle her own bills, and she would certainly dress herself. I know this journey is going to get darker, and I honestly do not believe I am ready for it, no matter how much I prepare. So, right now, I can honestly answer “how are you” in relation to my mother’s illness with “I am scared”. I am scared because I do not want to see my mother become more and more fragile, and I am sad that my children will not get to grow up with her as a grand mother (the woman who was once going to be their guardian). I am trying every single day to grab on to life with two hands and fight to stay on the ride. Most days I am successful and we have joy and laughter, and some days there are tears. Today just maybe one of those good days, time will only tell.
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