Mom is Free

Eulogy for Mom

Thelma Blackstone
February 13, 1944-June 15, 2012

                For as long as I can remember, whenever anyone has asked me whom I most admire, or who is the most influential person in my life, or who is my hero, my answer has been “my mom.” I’ve tried to put into words why this is, and I’ve found it difficult. It all sounds so trite on paper in light of who she was and what she meant to me.

She was wise, gentle, loving, and curious about the world, and I admired those traits about her most. She loved all people, not just those who looked like her or experienced life in the same way she did. Differences in cultures and beliefs didn’t scare her, they interested her. I’m not sure what scared her, if anything. She embraced life as it came. She loved going out and doing things, taking my sister and me, and later our children, along for the fun.  Together we went to countless plays, musicals, concerts, fairs, movies, teas, exhibits, tours, and fun classes. She also loved parties, attending them as well as throwing them. Her favorite parties involved costumes.

I admired the way she balanced work and family life. She went to college for the first time when my sister and I were little, eventually earning her Bachelor of Science degree in nursing. I remember Dad was so proud of her 4.0’s. As a nurse, she was well-respected and loved and became nurse manager for a time. After she got sick, we met more than one nurse who had worked with her at the Salem Hospital, and they all spoke of her fondly. One of them said, “She was the best boss I ever had.” I’m sure many more felt that same way. But despite her dedication to her job, she was still actively involved in the lives of my sister and me. We didn’t ever feel neglected or in her way. We were treasured daughters to the end.

Even toward the end of her life, she was a hero. She tried so hard to continue doing the things she was used to doing, even when her body and mind would no longer cooperate. It would have been easier for her to sit down and stop trying, but she was determined to keep going. While it is common for people with her condition to become angry and hostile, Mom remained consistently loving and gentle as she always had been. She is my inspiration for who I most want to be like.

I always knew my mom was a hero, but through this experience I learned that I was actually raised by two heroes. My dad’s dedication to Mom these past few years has been nothing short of heroic. I’ve read about love like that before and have probably seen it in a few movies, but with this experience, I saw it played out before my very eyes. I want my dad to know how deeply grateful I am for how lovingly he treated Mom during her illness, caring for her physical and emotional needs and doing everything he could to preserve her dignity.

I’m also grateful to my aunts, uncles, and cousins who have been so supportive during this time, especially Aunt Lorene who gave so much of her time to Mom. I’m grateful to Dad’s church family and mine for all their love and support, as well as friends and co-workers. And I’m grateful to the staff at Farmington Square who so lovingly cared for Mom since September. Most of all, I’m grateful to Alan, Mitchell, and Isaac who have been unfailingly patient, loving, and supportive as so much of my attention lately has been on my mom.

Now I have to get used to life without seeing her or touching her, and that’s still hard to imagine. But she once told me something that has proven true in my life time and time again. We were talking about my grandmas, both of whom had to bury a young son. I told her I didn’t know how they could bear it. She said that when I go through hard times, I’ll discover resources both within myself and surrounding me that I didn’t even know I had. So far she’s been right, so once again, I draw on those resources: my family and friends, and most of all, my Lord. She’s with Him now, and the door to Heaven has been cracked a little wider for me. When the time is right, I eagerly anticipate joining her there. I’m sure she’s busy planning a party for me. I can’t imagine what’s on the menu, but we’ll probably be wearing costumes.

Farmington Square

Wow...it's been about 10 months since I've last posted. As it turned out, the neurologist in Salem refused to see Mom. He said she's not his patient anymore, and Dr. Quinn's "referral" wasn't worded in such a way that he was willing to see her. I tried to get that cleared up through Dr. Quinn's office, but it was to no avail. Before long, however, she began to show more signs of Lewy Body, so we accepted the diagnosis and gave up the idea that it was NPH. Even if it was NPH, her progression became so swift that we felt the damage was probably irreversible, anyway.

In March 2011 Mom began to have what we assume are hallucinations. Thank goodness they don't seem to be scary ones like many LBD patients have. Unfortunately, with the hallucinations came increased wandering. Especially troubling was that she would leave the house during the night. It was only into the back yard, but it was only a matter of time before she attempted to go out in the front. Additionally, she would often fall. The first time this happened was in the afternoon. Dad had been in the back room and went to check on her, but she was nowhere to be found. After looking through the house, he began to check the backyard. He has two sheds and a lean-to in the back. He finally found her in one of the sheds. She had fallen and couldn't get back up by herself. When questioned, she said she was looking for her "conscience."  That night he found her outside in the shed at 4:00 in the morning. The next day, she headed out there after her bath in the evening. It was late enough to be dark outside. The next morning, Dad showed her every item in the shed, trying to help her identify what she was looking for. She just kept saying she was looking for her conscience.

This sort of thing continued and increased as the months passed. She became unable to walk without assistance as her falls became more frequent. She began to lose control of her bladder and bowels, especially when she fell. There was no way to reason with her to stay seated until she had someone to help her. Her ability to communicate became severaly impaired. The strain on dad was enormous. In June my sister and her daughters moved in for about 10 days while their house was renovated. During that time, my sister caught my mom trying to get out the front door "to see the midgets." Dad set up an alarm system to alert him when Mom tried to get out, but it was becoming increasingly apparent that Mom was no longer safe in her own home.

On Labor Day Weekend 2011, Mom moved to Farmington Square. She now is in a wheelchair much of the time and often needs help getting food to her mouth. She has good days where she'll repeat some words and phrases and bad days where she barely talks at all or slurs her speech when she does try to talk. She is unable to compose independent thoughts that make sense. I go see her every weekend and every Wednesday. I enjoy my time with her and never want to leave. The other residents are quite entertaining, but those are stories for another post.

Update

Wow. It's been a long time since I've posted, and so much has happened. Some of it is good stuff: I got to go to Europe with Mitchell for a choir trip, and it was an amazing experience. The countryside in Switzerland is the most beautiful place I've ever seen. I miss it. Since some of my ancestors are Swiss, I wonder if there is some sort of genetic pull there for me. It reminds me of a dream I had of Heaven, and I told Alan I'd like my ashes to be set free in the foothills of the Swiss alps.

Another highlight of my summer was Isaac finally learning to ride his bike and then pushing his dad and me to go riding with him nearly every day. I didn't go as often as Alan did, but I truly enjoyed the times I did go. Twice we went to Minto Brown together and had a wonderful ride in the sunshine. We also went to an area closer to our house with a lot of bike trails. It used to belong to Fairview, an organization that works with people with developmental delays. It was closed and the property purchased by a developer. Unfortunately for the developer, the economy has led to a lack of sales. Fortunately for us, the roads and bike trails are all paved, yet the population is so low that we usually get to use them by ourselves.

After my last post, we finally got a diagnosis for my mom. It's Lewy Body Dementia.
For more information about this disease, go to  www.lbda.org.

I'm still plagued with doubts. What if it's not? What if she's simply overmedicated? What if it's something curable? But we've explored all those avenues, and the specialists all tell us that there is nothing we can do except try to slow it down with medication and wait for the end. I've struggled with depression since May. It's a hard diagnosis to face. It's the second most common dementia after Alzheimer's, but it's more devastating. Not only does it kill sooner, but the end is drug out and exceptionally hard on the families. If it follows its normal course, Mom will become hostile and have hallucinations. So far that hasn't happened, thank God. She'll lose her ability to walk and to bathe and dress herself. She'll probably need to wear Depends and be changed and cleaned up by her care takers. In the very end, she will choke and possibly vomit when eating. She may not be able to speak or if she can, she may not recognize us. All of that is going to be too much for my dad to handle who is in poor health himself. Will she go to a care home? Will I have to quit my job to make sure she's cared for properly? Will dad be able to live alone, or can he go with her? So many unknowns.

Soon after we got that diagnosis, dad's heart rate and blood pressure became so low that he had to go immediately to the hospital and had a pacemaker put in. I left for Europe soon after that. Three weeks after I came home, on August 2, my brother-in-law Lynn died unexpectedly in his sleep. My sister needed a lot of help after his death (and will probably always need help in different ways--yardwork, financial, car repair, etc.). Her friends and church and other relatives helped in the immediate aftermath, but I'm not sure how much longer others can help her. I worry about the stress it places on my dad because he's trying to do as much as he can to help her now that Lynn is gone. But before that, Lynn was helping Dad with his yardwork. I feel like there is now too much need in our family and not enough strength/time/money to meet all the needs. It's stressful, to say the least. We're out of balance.

God is good. I claim that. I believe that. Despite my circumstances, I have faith that God will provide and equip me and others to persevere through this time. Mom used to tell me that when the hard times come, God gives us resources we didn't know we had. I trust she's right about that. Faith is a good legacy to have.