This Facebook post to family and friends puts in perspective just how my goals have morphed from taking daily photos of Mom to help me with my memory to posting daily these photographs on Facebook.
To everyone that pushes the "Like" button on Mom's post or leaves comments. . . I want to thank you for your participation in Mom's day. When I see her, we go though each comment and "Like." We discuss each individual that cares, who they are, how we know them or anything else that may come up that is affecting Mom that day. Facebook opens a dialogue that she looks forward to. The communication fuels the daily discussions about the network of friends and family, or something that may have happened in the home. This helps Mom feels connected to the world. Facebook is a wonderful tool--it gives Mom hope. I just thought that you should know. Steven Park (Facebook entry, August 11, 2015, edited)
Follow me below the blue box and I'll explain about Mom.
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THE question I hate to answer from friends and family who mean well is "How is your Mom doing?" It's so easy to ask, but difficult to answer. Sometimes I want to retort, "How do you think she's doing?" THE honest answer is "She is taking the normal course for people who have dementia: discernible effects of the malady are losing one's memory and sequence of events over time." Mom's noticeable, subtle effects of mental slippage occur on a bi-weekly basis. I dread the moment when this is a daily occurrence. That, my friends, is on a good day. If Mom gets sick or has an infection, there is a noticeable drop in her acuity. The situation puts me in a funk by the inherit dishonesty of saying she is doing 'fine.' So, I take the easy way out by answering the query by saying she is fine. Chickenshit. Dementia is an insidious disease. Mom's living situation became an issue for the family at Dad's death. She could not live by herself in the retirement home that she and Dad built on the lake -- it was time to move closer to one of her children. Mom is a proud person, but she was going to need more and more help, as she was in the in the early stages of the disease. After some time living independently in an apartment, there was a house that became available right next door to my sister that was perfect for Mom. It was situated in a group of four houses out in the countryside a couple of miles from a small town, where the main crossroads is controlled by a flashing light and a four-way stop. In this small town, my sister and her husband taught school. You couldn't ask for a better setup for Mom. Mom's dementia progressed. The family soon had to tell Mom she was not capable of driving anymore. I elected myself to take the car-keys away because all of her anger would be directed towards me and not at the primary caretaker. That was the hardest thing I've ever done. To do what I can to make sure she does not get lost. . . or have a wreck. . . or kill herself. . . or, worse yet, someone else. I do not think she's forgiven me. Mom's living arrangements in the country lasted for a couple of years. Then she started having trouble keeping her medications straight. For instance, she was taking too many allergy medications while choosing not take some other vital meds. Her blood pressure started to spike and she was prone to urinary tract infections that went along with her depression, anxiety and panic attacks. Mom had real issues with letting anyone help her with her meds, but it got to the point of forcibly taking on that task. This was another ugly scene. Mom fought the family all the way to maintain her independence, her dignity. First her driving, now her control over meds -- Mom said she felt like she was losing control over her life. The situation continued to deteriorate when Mom had a stroke. I took a leave of absence from my job to deal with Mom while she went through rehab in the city. Mom's goal (and the family's) was to continue to live as independently as possible in her house out in the country. What to do with Mom? We tried to continue her chosen living arrangements. But before long the family doctor said it was time for the family to start thinking and actively looking for other living arrangements for Mom. The family put this action off as long as possible -- wanting what was best for Mom and Mom's desires. Then the day came when Mom's actions made the decision easy. That day Mom left the her house dressed only in her nightgown, using her walker, at 6:00am to “Go to town.” Although she remembers the incident quite clearly, which town she meant is still foggy, whether it was a local town or a town 300 miles away in East Texas that was her "home." Fortunately, a neighbor was outside watering plants and prevented her from getting hurt on the country road. Mom still remembers that episode, even though now she can’t remember if she ate lunch, yet alone what it consisted of. Once when I asked if she had any idea why she was in her nightgown, she will say, “How do you think I was going to get there? I was going to hitchhike with some trucker!” And then we both laugh. . . . Mom is currently living in an residential assistive care center, an actual house, with five other people. Mom calls the patients that reside in the house "inmates." But she gets good care and she can live out her days in one place. That would be great to end the story there, but, come on, this is real life. Mom deals with depression every day! Mom knows that the home is the last place she will ever live. As the months blend into years, she sees the other residents die. My father always said that death was a part of life, but it is a hard part for Mom and her loved ones. There are great many disabilities that eat away at self reliance. Physical dependence, anxiety, depression, stroke, aphasia and apraxia I have known personally. But, I am still learning about dementia. I cannot control Mom's dementia, but I found ways to help her manage her depression. One way is to help Mom to stay outside of herself. That is the reason for my visits every day! Mom's RN, my sisters, and I were trying to figure out how to solve a worsening hygiene issue. A sister noticed that Mom's hair wasn't being washed properly. Mom would leave traces of soap or not bathe regularly. I can't smell an odor unless it knocks a person down, probably due to my 16 years of 2 packs a day smoking addiction. The problem is, was, and always will be Mom's dignity in dealing with dementia. It was suggested by her RN that she has a nurse's aid assist Mom while bathing to check for signs that a "new medication" was not having an adverse effect. And, while the nurse's aid was in the shower facility with Mom, offer to help with the bathing. We, as a group, decided to move ahead with the plan. It was a great plan! The weak link in the wonderful plan was finding a nurse's assistant who had the guts enough to overcome Mom's bull resistance. Thus, the wonderful plan was doomed. In the meantime, because I have issues with my own short-term memory, I started taking photos of Mom on my daily visits. I did not care about anything except that it showed what clothes she had on that day. Not her face, not her expression and certainly not the quality of the photo. And I didn't dare level with Mom that I was recording her hygiene issues each day by recording what clothes she had on. All she knew was that I was taking her photographs. And I was fine with that. But, she noticed. I started taking pictures that included Mom's face along with the top of her pants to compare with the previous day's photo. Mom started making sure she wore clean clothes everyday and her hair was brushed. Did not have to say anything to Mom, just take a photo. Problem solved -- everybody is happy. No bickering or arguing or having to correct Mom. So simple.
I wondered what to do with the daily photos of Mom -- so many photos. I just hate deleting photos of any kind though my amateur skills as a photographer are on full display. But, every now and then, I would snap a gem. I save all photos, nevertheless, the bad as well as the good. Last year, I decided to share the photos of Mom on Facebook. I knew that I had one sister who maintains daily contact with her kids through this medium, so the idea of adding Mom just seemed like a natural extension. Facebook opened up a whole new avenue to Mom to stay in touch with family. Mom and I post the daily photos on Facebook -- I take her photo and she takes mine. And we spend time with others on the medium. Mom is getting a social life. That is important. So, if you want to know how Mom is doing, "Like" her on Facebook! Mom enjoys her Facebook society, but I know the day will come when this too becomes a frustration she can’t overcome. We have this time together, until . . . . Post Script: I started writing this diary to publish on KosAbility under my name. But as I wrote the piece, I wanted to include the truth as I saw it, the bad as well as the good. Now it is one thing to reveal embarrassing moments when you're talking about yourself and it is quite another when you reveal embarrassing moments with someone else, especially your mom. After discussion with people I trust, I decided to withhold this diary until after Mom's death to insure no harm. But that may be years away; Facebook may not be even relevant in a few years. Then I thought that I might release the story as an anonymous post. I discussed my quandary with postmodernista of KosAbility. She brought up the fact that the embarrassment with Mom might not be as great as I thought as we were already dealing with the issue; I might be surprised. Postmodernista left unsaid in the message that was I to tell Mom. Chickenshit. So, I grudgingly shared the essay with Mom, and let her make the final decision as to my proposed anonymity. But, Mom surprised me in that she felt that it would be a good story to tell about dealing with dementia and depression in a constructive way. Mom also wants to share that she takes a bath and washes her hair EVERY DAY! Always has! (sigh) Thank you, Mom. And thank you for reading this diary; it helps us to heal.
I 'm living an Emotional Journey. First I was a Licensed Heating Ventilation Air Conditioning Technician, Vocational Teacher and Business Owner. Then, a Stroke Survivor, Student and an Employment Counselor. Finally, a minimum wage employee of a gym. But I will always be a father, husband, son, brother, uncle and a very loyal friend. |