It’s hard for me to imagine what it took for my dad to call and ask for my support in moving our family away from our disconnect with his reality. In hind sight, the denial was convenient, the only reason it worked was because of the distance. Looking back, it was all too convenient to explain away the lapses that had become common with my mom. My dad needed us to be with him in moving forward an acknowledging the diagnosis of Alzheimer’s disease. Below is an email that I sent to my three brothers as a sort of call to action.
Hi, hope this note finds each of you well. How strange that I should have to communicate with you in this way (email). It’s like the family meeting that we used to have that I cried all the way through. Some things never change.
I am writing to ensure that we are all on the same page and in the know about Mom and her rather complicated and somewhat confusing health situation. As I think each of you have heard, Mom was diagnosed with early stage Alzheimer’s disease in the past year or so. She has been in some clinical trials at the Mayo Clinic and has tried a couple of different medications that seemed to help, but she had some difficulty tolerating. She is being considered for another clinical trial that is more invasive, but it has become clear that even with all of the treatment that she receives, her condition is slowly deteriorating.
The changes are insidious and hard to detect over the phone, which is great for me and I assume all of us most of the time. She continues to function at a very high level but deficits have become obvious when spending time with her in person. The things that I found most noticeable during my recent visit were: she doesn’t like to drive or be by herself, she has stopped doing many of the things that she used to do (i.e. cooking meals, grocery shopping on her own, writing letters, running errands, etc.). She seems more tired and isn’t sleeping very well. She is losing her senses of smell and taste and her appetite is diminished which is causing her to lose weight. She loses her thought mid-sentence and forgets what she was talking about. Having said all of this, much of the time I spent with her felt just the same, she was as warm and wonderful as ever. We went to concerts, got pedicures, went shopping and all those things that we love.
While I was in Phoenix, I had the opportunity to go to her primary doctor with her and Dad. Dr. Reidy is wonderful and I feel very confident that Mom is getting the best care available. She also sees a neurologist who specializes in Alzheimer’s disease who I understand is renowned in the field and has already gained the confidence of both Mom and Dad. I also went to a lunch meeting with Mom and Dad and their “Support Group”, now that was an experience! The group is wonderful, really dynamic and encouraging and actually hilarious. They have given themselves the name CRS (Can’t Remember Shit), and believe it or not, Dad was not even the one who came up with the name. The day I left this group walked in the Alzheimer’s 5K. This seems to be the greatest therapy available to both Mom and Dad, I am so thankful for this resource that fell into their laps.
I think that it is also important to touch on Dad and how he is doing. Mom requires his full time love and attention which he gives without thought or limit. His attitude is predictably positive and he has found a wonderful balance of nudging Mom to stay active and not pushing her harder than that which is comfortable for her. He has somehow found limitless patience with having to repeat things and relieve her tension when she gets anxious, (she seems experience more anxiety around keeping commitments and remembering where she is supposed to be and what needs to get done). I probably shouldn’t have been surprised, but his resilience and compassion were endless and the natural and perfect solution to Mom’s anxieties and limitations. I honestly cannot imagine anyone handling this situation any better than Dad is doing. They are both amazing.
In conversations with Chuck and Dad, we decided that making sure that each of us understood the subtle changes in Mom’s condition was important. I think using this information to adjust our expectations and provide support and understanding is most helpful. Please know that both Mom and Dad are comfortable discussing these things and neither have let the health issues define them.
I love being your sister and am glad that we have each other to talk with and support while we find new ways to support and love Mom and Dad. Feel free to call if you have questions or whatever.
Love to all of you.