Jared has been dealing with progressive cognitive decline for over 5 years now. His stroke in October of 2009 sped up the process. He’s made big improvements in some areas over the past two years. So why did the reality of what the neuropsychologist was sharing seem so unbelievable?
We sat at the Traumatic Brain Injury clinic at Fort Hood two weeks ago while the doctor reviewed the findings of his testing. Jared had previously undergone hours of testing in 2009 and when we heard those results they were so scary sounding. He shouldn’t drive. He should file for disability. He may have mad cow disease. He could be crippled and dead within eight years. He should not care for his children unattended. I need to get power of attorney and he needs to turn over his rights to make decisions to me.
Well, we scoffed at some of that info two years ago and within two months he had a stroke and was permanently disabled. So now we sit and once again hear a recommendations and my head spins. Once again he shouldn’t drive. Don’t worry he doesn’t and hasn’t since his stroke. He shouldn’t engage in dangerous activities such as standing on a step ladder or using power tools (when did a step ladder become dangerous?). His spouse will need to be present when receiving medical feedback. He will require the assistance of his spouse with medications, finances and legal documents. No unsupervised caregiving to his children. It was this last one that took me by surprise. The patient and his wife should seek the assistance of an attorney to plan for his welfare and the custody of their children should his spouse not be available.
Okay, I do realize that I will die and who knows when. Yes, we already have a plan in place for our kids if we die while they are our dependents. Why did I not even consider me dying before Jared? Perhaps because he is the “sick” one? Thankfully I have a brother-in-law who is willing to take on my whole crew if necessary…including Jared. I felt so blindsided by reality.
It was hard to hear the test results although I live them everyday. I sometimes “forget” that Jared is significantly cognitively impaired because he can be so “normal”. There is an aspect of this report that is frightening and yet another aspect that is comforting. Why is it comforting? It helps me to realize that he really can’t change some things and it makes me more understanding of him which makes things better all around. When I accept he is disabled then I am more apt to quit kicking against the goads.







You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 




G-J
Natalie, I can completely relate to what you are saying. Although like you with Jared, sometimes my husband Steve seems so normal that I think he’s getting better or maybe he isn’t as bad off as we’ve thought. When a doctor delivers the information frankly, it is a little startling. You try to rationalize that these positive things are happening, and they are, but that doesn’t change the overall picture.
I agree that it is both frightening and comforting to hear these things. It is comforting because it lets you know that the things that you see that don’t fit with “normal” are actually happening.
Natalie
I’m sure we could compare quite a few similar experiences. The brain is baffling to me…even my own! ( :
While all illnesses are difficult I’ve found it especially hard to deal with the daily struggles of cognitive decline largely because it isn’t obvious on the outside and yet it’s hard for the “sick” person and the caregiver to come to grips with what is happening.
Denise
Hi Natalie–Your post brings us right in there with you. It’s like we’re sitting next to you, trying to absorb the shock of the doctor’s words. It may have seemed surreal to you both two years ago and two weeks ago.
I like how you describe the comfort and the fear. It’s frightening to prepare for a future you don’t want. And, yet, the comfort can come in knowing you still can control how you use the moments in your day.
Always good to hear from you!
Natalie
Thanks Denise!
Bette
Hi Natalie,
Several months ago the neurologist talked about my mother’s dementia in terms of stages – although I was observing what was happening, there’s something about hearing it from the doctor that was startling and as you said somehow gives you the added understanding for the day to days.
I have to believe that the startles give us strength we can use along the way.
You are a strong advocate and caregiver for your husband; he is so blessed to have you.
Thinking of you both and hoping for comfort for both of you. Take Care Natalie.
Natalie
Thanks Bette.
I think I’ve read somewhere about stages of dementia and honestly it’s overwhelming to know what may be in store. I say “may be” because that’s the hardest part really with all of us…the unknown.
So thankful for friends who understand.
Trish
Natalie, You are so right about hearing news from the doctor and being startled & comforted. (Odd feelings to have together but it happens!). You are wonderful to be such a great caregiver & advocate to your husband and mom all at the same time. I take Robert (my brother) to the neuropsych next week so I’m sure I’ll have my own range of emotions. I appreciate you sharing about your neuro visits. Take care.
Natalie
Hope that the report for Robert is positive.
Thanks Trish.