Posted on: September 17, 2014 | 0 Comments |
Note: In 2007, Jamie Wilson Headley (founder and CEO of Dementia Services Group) began the complicated process of helping her once-independent mother adjust to life with dementia.
These are the challenges that one woman faced, but although Jamie’s Journey is deeply personal, it is also universal. We hope that her trials and triumphs will shed light on the emotional and logistical issues that come with caring someone with dementia.
The facility that Mom moved into did not have any apartments on the assisted living floor so we moved her into an independent living apartment and put her on the waiting list for an assisted living apartment. The difference between the two was that the assisted living apartment was a bit smaller, and the staff would manage her medication and check on her every couple of hours. She could also eat in a more private dinning area on that floor if she chose. After a few months, the assisted living apartment opened up and my brother and I moved Mom to that floor. Little did we know the moves would become common place.
Mom was agreeable to the move because she didn’t feel “right” and she like the idea of someone checking on her all the time. However she hated the idea of living with “all these OLD people”. She did not consider herself old and didn’t want anyone else thinking of her as old either. Mom was still chic and sassy and funny and beautiful. She didn’t look like she belonged in “a home”.
But I could tell her memory was changing. She was repeating the same stories and asking the same questions over and over. She never seemed to know what day it was and she couldn’t always remember the conversations we had just had. Mom was aware that she couldn’t remember these things and it was really starting to frustrate and upset her. In addition to her memory issues, Mom just wasn’t feeling good. She had this constant head ache and fatigue. Her back was always sore from the fall she had taken earlier and she just felt shakey and almost flu like.
So my sister, a family friend Karen and I began the deluge of doctors appointments to determine why Mom felt bad. We went through a few months of visits to her GP who said she basically had a case of “the dwindles” and that she was just winding down (not helpful), then we saw a dentist who said she had TMJ and that was causing her headaches (also not helpful or accurate),then we saw a new GP who said Mom was just depressed, she didn’t have dementia (I liked the sound of that). Still no one had used the term Alzheimer’s Disease and still I continued in my state of denial hoping this was all going to get better with the right medications. Finally, we saw a geriatrician who said Mom was depressed (OK, we got that) and she scheduled Mom for a neurophysch exam to confirm. Mom was put on Aricept for her memory and an anti-depressant. The doctor said both medications would take a few weeks to take effect. The word dementia was used again but I didn’t really know what that meant. So after several weeks of doctors visits Mom felt no better, and we really were no closer to understanding what was wrong or more importantly how to fix it.
Mom struggled with idea of being depressed. She had always been in total control of herself and her emotions. She was not a cryer – AT ALL. At that point I had only seen my Mother cry once and that was when her brother died unexpectedly and that was 35 years prior. So now when she would feel down or anxious and would suddenly start to cry it would really freak her out. Yeah, it freaked me out a bit too. I would get these really emotionally charged phone calls where Mom would be saying she just wanted to jump out the window and she was so alone and she would start to cry and then she would just lose it because she was crying. ”I don’t cry! You know me, I have been able to handle everything! I am strong! I don’t cry! Why am I crying? What is wrong with me?” She would also have these bouts of anger – they usually preceded the bouts of crying – where she would get irrationally angry. One time she threatened to throw a piece of fish at the Executive Director of her assisted living facility because it was overcooked. Totally not her style. My siblings and I were really lost at this point. We didn’t understand what was wrong with her and we didn’t know how to fix it or even make her feel better. My sister and I would just take turns talking her down, sometimes for hours at a time. We were all scared and just wanted a little bit of peace and re assurance. Well, life is funny sometimes and the road to peace can be pretty rocky. We still had some big rocks to climb.