Different Paths, Same Destination

I was talking with an old friend in the supermarket the other day and I have to admit, it was almost as if we were exchanging war stories. I think that happens often when two or more caregivers get together. Taking care of someone with dementia or Alzheimer’s changes the life of the patient, and it changes the lives of the people who love them and take care of their daily needs. Incontinence, food texture, hygiene, and patience are all battles waged on a daily basis and fill conversations.

It is never easy to watch a person engulfed in a merciless disease. They don’t see themselves as we see them. They don’t understand their thoughts are no longer lucid. They don’t understand their sentences are seldom finished and if they are they don’t make sense to anyone else. They are frustrated, impatient, and eventually angry in a way we can’t understand. They express their emotions to the only people they can, the people who are there for them every day.

Most of us watch the six o’clock news, maybe discuss it a few minutes, and then go on with our lives. We take normal precautions to insure the safety of our family. A dementia patient might remember something from the six o’clock news days or weeks after hearing it and become stressed about it. My friend mentioned coming home to find her husband sitting with a pistol aimed at the front door when she walked through it. Thankfully, there was no tragedy that day but it could easily have been a very sad day for their family and friends. The firearm is no longer present in the home but the truth is, it is impossible to keep the home danger free when someone has dementia or Alzheimer’s. 

Sometimes I want my mother to be the woman with the hearty laughter again. I have moments when I feel like I am losing myself to the stream of cleaning, medicating, researching, and worrying. Those are the moments when I want to hug my mother tightly, look her directly in the eye, and beg her to please not forget about me, or her grandchildren, or the little dog who so faithfully watches over her day and night.

I write about this journey I am taking with my mother to ease the stress and ache in my heart. I know her voice will go silent someday and she is barely walking now. She asks how many people are working here and often looks at me as I enter the room and announces to the air, “There’s my mother. I knew she would be back.”

I sit and write down my self-perceived mistakes just to pass the time. I go over them like I check and recheck my store list to make sure I haven’t forgotten anything. I try to remember when this carousel ride began and for the life of me, I cannot pinpoint the descent into this dark tunnel.

Until recently, my mother recited the names of her brother and her sisters nearly every day. I think she was determined not to forget them, not to let them die along with her other memories.  She has become quieter and quieter over the last few weeks and even when I should be sleeping I can’t get my mind to shut off and allow me to rest. I cherish the moments when she has some clarity and calls me by name.

I often feel guilty about the time I cannot give to my adult children, my neighbors, and my own dreams and desires. I fret about not being able to keep up my appearance the way I once did and I still struggle to keep my home immaculate. Taking care of someone else is physically and mentally draining at times but I remind myself over and over again that my mother can’t help losing her memory, her thoughts, or her youth.

Then I cross paths with someone dealing with far more than I am and it humbles me. The friend I talked to in the supermarket is dealing with her husband and his late stage Alzheimer’s. She is also bearing the pain of knowing her young granddaughter is fighting a battle with cancer. Her son is going through problems in his personal life. I know she wishes she had more time to devote to them but she must take care of her husband first.

As we walked away in separate directions the other day I promised to keep her and her family in my prayers and asked her to keep my family in her prayers. God brings us comfort in times and ways we aren't expecting.

© Dianna Doles Petry

Making Peace with the Inevitable

In December of 2007, my family buried a teenager. He was taken from us suddenly and I remember thinking how wrong it was for us to be saying good-bye to him when it should be the other way around. It just seems to be the natural order of life for children to outlive their parents. Still, we are not prepared to lose our parents either, no matter how old we are when it happens.

At some point over the last decade or so, my mother and I seem to have reversed our roles in life. I have become her caretaker and she has become quite childlike. Now there is no doubt that the end of her life is near and even though it’s a natural part of life and I’ve known it was coming for quite a while, I find myself struggling with my emotions. Each smile, each sunset, each sunrise, and even each tear seems so much more important now that it would have in the past.

My mother’s body has grown tired. Her kidney function is dwindling daily, she has congestive heart failure, bladder cancer, and dementia has robbed her of many memories she wanted to hold onto throughout her life. Still, she smiles easily and often. Yesterday her doctor informed me that it’s time to make a decision that cannot be put off any longer. Do we want her to undergo dialysis or just keep her comfortable and let nature run its course? At eighty-six years of age with so many health issues I don’t feel dialysis is an option.

On our way out of town after leaving the doctor’s office my mother went into a panicked state. I thought it was because of the conversation we had just carried on in during the office visit. She was looking down at the floor of the pick-up truck I was driving and jabbering but I could not make out what she was saying. “Mother, look at me and tell me what’s wrong!” I said.

She looked at me with a very startled expression as she replied, “My feet are gone. I don’t know what happened to them but they’re gone.” I couldn’t help but chuckle.

“They’re right there at the end of your legs,” I said trying not to laugh out loud. “Oh, Sh**!” she replied, and that was that. She is accustomed to riding in my much larger SUV and the truck is much smaller. There have been many moments like this one shared between us. She trusts me to take care of her. She trusts me to protect her. She looks at me the same way I looked at her when I was a young child and she was a vibrant mother nurturing her young.

My emotional struggles come from wanting to be honest with my mother without making her afraid. I want to comfort her without being negative. I want her to know as much happiness as possible while she’s here. If it makes any sense, I think we start the grieving process the moment we know we are going to lose a loved one very soon. I want, no, I need her to have peace of mind.

I am grateful that I am a very outgoing person. I know that I can reach out to my friends and family for support and advice when I need it. I am grateful that many people in my life make an effort to keep me smiling no matter what adversity comes my way. My mother has none of those connections anymore. Her whole world is here in this house. Her immediate family has all passed away or lives too far away to travel back here to visit. I have assured her that the people she has loved who have gone before her will be waiting on the other side for us, not just her, but us.

I’m sure one of the biggest regrets anyone has after losing a loved one is not having shared how much they were loved and appreciated. Sometimes they don’t share those feelings because they are so reserved they bottle up emotions. A lot of times though, people don’t express their feelings because they don’t want to say, “I hope you feel better soon,” when there is no hope for recovery.

My mother and I have not always seen eye-to-eye; in fact, we have had our share of ups and downs. We have totally opposite personalities. She never saw the need for higher education. I never seem to get enough education. She hated change, I thrive on change. She was content to stay at home and I enjoy travelling. I wanted my children to know her and spend time with her but I reminded her on more than one occasion that they were MY children and they would follow MY rules. I cannot say I regret the moments when we didn’t see things the same way. We learned a lot about each other when we disagreed and had to work things out to get past the hurt feelings or misunderstanding.

When we lost the teenager it happened so suddenly that there was no time to say good-bye. There was no time to express our love one more time or tell him how proud of him we had always been. He had no time to be held as he passed away or tell us how he felt about the life we had shared up to that point.

Maybe knowing that someone is dancing with death is a blessing in a strange way. There is time to remember the good times we’ve shared and talk about them with her. There is time to tell her that although I often thought she was too possessive and too strict, she did something right because I’m happy with the woman I see in my mirror every day and it was her impact on my life that made that possible. It’s a sad point to make but maybe the compassion and tenderness we give people when they near the end of their life is lacking when we take each tomorrow with them for granted before we know they are suffering from a terminal illness. Each day could the last one for any one of us.

Moments in life soon pass,

But the memories they made,

Like music play on and on,

As youth and beauty fade.

Words we left unsaid,

A touch we never gave,

Tears we cry in the still of night,

Are carried to our grave.

© Dianna Doles-Petry

7/9/2010