A few months ago, I wrote I was going to interview my family and post their responses. I had forgotten that promise until today, when I was going through a folder I keep labelled “Possible Post Topics.” In that folder I found a typed interview I had with my daughter Beth, but had forgotten about. The interview was undated but I know it occurred several months ago—maybe even a year ago. [Editor’s note: Beth has since shared that the interview was done about six weeks ago.] However most of her responses remain relevant today. Her answers are honest and compassionate; just what I would expect from this strong, brave woman.
After reading it, I knew I had to post it, because it is filled with honesty and compassion.
Question: What was your initial/first reaction when you were told I had MCI.
Beth: Actually, I was a little relieved that you had a diagnosis. Dad, Steven and I had been noticing symptoms for months, and as odd as it may seem, we were comforted to know that we weren’t imagining things. And Mild Cognitive Impairment was a diagnosis that definitely was better than Alzheimer’s or Dementia.
Q: I know you were with me—did the doc explain exactly what MCI was?
B: I do not remember being with you the first time you did all the memory tests. I do remember you reporting to me how long and intimidating the tests were. But as far as the doctors actually explaining exactly MCI is, no, they really did not explain in the early days. I do remember you only tested low in one or two areas and overall, the doctors seemed rather unconcerned. I’m guessing that they don’t usually have families notice changes so early. They did focus on the fact that MCI doesn’t always progress to dementia. They didn’t provide any time frame, or symptoms we should watch for.
Q: Did you go to the internet to find out more about MCI?
B: Yes I did. And since then I have consulted rating scales to help understand what stage MCI or dementia you are experiencing, so that I can orient myself, reassure myself that we are responding appropriately and have an understanding of what to look for at the next stage.
Q: What time frame did you expect to occur before I became totally ‘gone’? Has that expectation been accurate? Longer? Shorter?
B: I had no expectation of a time frame for when you might be totally ‘gone.’ I try to figure out where you are now, what you need now, and what the next stage might look like, so I can prepare.
Q: What pieces of my condition are the most difficult for you to witness?
B: It is possibly hardest to watch you withdraw, shrink, become insecure and anxious.
Q: Do you feel comfortable asking me questions—physical, mental, and/or emotionally?
B: Yes I feel comfortable, but I know that the answers are less reliable than they used to be. They reflect what you are feeling now with your impaired memory of the context and duration.
Q: I am certain you and Steven and Keith talk with each other about me. Are you willing to share what some of those conversation are about?
B: We usually spend some time comparing notes on what symptoms we’ve noticed lately, or something that was particularly concerning, like forgetting if you took a medication, or reporting to one of us that you fainted the other night when in actuality you fainted at least 4 months ago. We discuss if we need to consult with Dad to see if what you reported is accurate and if so, share our concerns and suggestion with him.
Q: Did you or did I tell the grandchildren? What was their reaction and fears (which they likely shared with you and not me)? Have their reactions/fears changed over time?
B: I’m pretty sure that I explained various parts of this to the kids over the past 7 years. At first they did not really notice your symptoms and were not as familiar with the family stories you tell to pick up on any inaccuracies. When I would point them out to the kids, they often felt I was overreacting. Now they see the symptoms themselves. They have not expressed any fears, but we are all prepared that at some point you may start to confuse the kids names or forget altogether.
Q: What are the most notable changes you’ve witnessed?
B: Probably the most notable changes are in your demeanor. You are more tentative, self-conscious, and anxious. It is hard to have a deep conversation like we used to have, exploring different aspects of a relationship or decision. And in the last couple years there has been a noticeable decline in your short-term memory. The reassuring part is that it seems to me you are less aware of these lapses/changes and therefore they seem less troubling to you.
Q: What are your concerns/fears for the future (time, deterioration, safety)?
B: I am always looking for indications that adjustments need to be made for your safety, but usually have to rely on Dad to share a concern. I’m also concerned about when you might need more physical support than Dad can provide. Will I be able to provide that? Will professional help be needed? Will you need to go into assisted living facility? Do you have the financial resources for those possible next levels of support? And I walk through the scenario of something happening to Dad.
One additional thought is that I wonder at what point you, or the doctors, may determine that you have advanced out of MCI. In conversing with others or in writing your blog, you are representing to others what MCI looks like, but if you have actually progressed into dementia, that story and label should reflect that.