Posted on: December 29, 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.
Now that we had Mom moved in, I needed to attend to the other details of getting her life set up in Indy. I needed to find her doctors, make sure her legal documents were in order and hopefully find some ways to help her integrate into her new life. The problem was I really had no idea how to do any of that. But life has a funny way of putting what you need in front of you when you need it.
The key is not tripping over it or ignoring it. I decided to try and get Mom some therapy for the depression, anxiety and mood swings. She was really struggling and I thought maybe this would help. Funny, it didn’t occur to me at the time that I was ALSO really struggling and could have benefited from some therapy or help as well. I found a therapist for her and set up a few appointments. Mom had been a recovering alcoholic since I was five. She understood the value of therapy and working through issues, so this seemed like a good option.
Mom seemed to enjoy the therapy sessions, but the problem was her short term memory was shot. She couldn’t remember the session a few hours after she got back to her apartment. Most therapy operates under the premise of “doing the work” and building on each session towards growth, healing, whatever. That doesn’t work if you can’t “do the work” because you don’t remember the session! I quickly realized this was a waste of time, as did the therapist. However, Mom seemed to at least enjoy the sessions and having someone “neutral” to talk to so I continued them for a few more months. I was disappointed though – we were no closer to making this better.
Think positive. I worry about forgetting. Have headaches. I am very blessed – be grateful. Banish the fear! Help others. Do exercises. Can do! I always have so…just keep it up. I am OK but must work at it and have fun – help others. Excerpt from Mom’s journal
Next was trying to find the right doctor. I didn’t realize at that time that there was “right type of doctor”. There IS. When you have a problem with your heart you see a cardiologist. If you have cancer you see an oncologist. If you are dealing with dementia you need to see a neurologist or a geriatrician. Brain issue, aging issue – now is seems logical you would want a specialist in those areas. The therapist recommended a neurologist so I decided to research him. As luck would have it the doctor she recommended was world renowned and happened to be taking new patients. Score! I got Mom an appointment and we headed downtown a few weeks later with hopeful anticipation of a fix for this nightmare.
After a painful 20 minute drive with Mom asking me the same questions over and over and criticizing my choice of outfits (a new symptom) we arrived at the office. I was not prepared for the hour wait or the 1.5 hour exam that took place BEFORE we ever actually saw the neurologist. By the time we saw him, we were both exhausted and a bit grouchy. So when the doctor came in with a beat up old medical bag, wrinkled shirt and loosened tie and began telling a story about his daughters labrador retriever, I thought “this guy better be the next Gregory House or it is going to get ugly in here”. He looked at Mom’s chart and test results, and then suggested we relax and take a trip somewhere. WHAT??? The last thing I wanted to do was TRAVEL somewhere with my Mom at this point.
Mom just looked at him and calmly said, “I have already done all my traveling – been all over the world- I’m kind of done with that.”
At which point the doctor looked at me and said, “Well, where do you want to go?”
I said I thought Hawaii was nice and he then suggested Amsterdam. Then he said he was going to dramatically increase her antidepressant and we could consider enrolling in a clinical trial but other than that there was really nothing he could do for her and we should come back again in six months. I kept waiting for a punch line or Alan Ladd to tell me I was on candid camera.
I guess Amsterdam was the punch line because I giggled at the thought of that most of the way home. So I filled her new prescription and decided to researched clinical trials. I sat in a hot tub that night drinking wine and crying and thinking WTH? Really, is this the way this journey is going to go? Was that really the best the medical community could offer?
In defense of the neurologist, that really was the best he could offer. There is no cure or treatment of Alzheimer’s so there was nothing he could do medically. All that could be done was to try and manage the other symptoms like the depression and anxiety. If I had only known then what I know now…..