I asked our two adult children to respond to some suggested questions to provide their perspective on our situation and to share their feelings about the journey they have been on with us.  Two evenings ago I posted our Son, Micah’s response. 

Tonight’s post includes the response of our daughter, Lisa.  Lisa just turned 40 years old on the Fourth of July.  I remember holding her as the first steps were taken on the moon.  I realized she would never know a time before what seemed to be an event that would change the world for all time.  As it turned out, the change was not so dramatic.  By now I thought there might be regular shuttles to one of the colonies on the moon. 

Lisa is married to Denis (yes, with one “n”).  Their two daughters are Abigail (turning 7 this November) and Ashlyn (turning 5 in August).  About three and a half years ago, Denis suggested to Lisa that they pull up stakes and move from ten hours away to the town in which we live so that they could help us out for the last two years before I could retire.  They did just that.  They have been back in Kentucky for about a year now.  Needless to say, we miss them very much. 

Here is what Lisa wrote:

I had a dream a few nights ago that my Dad was preaching back at our old church in Kansas City. Mom and I were sitting together and some sort of disruption happened outside the sanctuary; I can’t remember exactly what it was. Mom and I rushed to the scene and worked together to solve the crisis. What sticks with me about the dream is that it was Mom before Parkinsons. She and I were together taking care of things, moving quickly, taking charge, making decisions.

It’s been a long time since I have thought about the Mom that could have been. I’ll admit to feeling some envy when my friends talk about their moms who are babysitting grandkids or lunching & shopping together. I do wish we had been able to have those experiences. Even more than that, I wish that my daughters had the opportunity to know the real person inside. Her fun personality and sharp wit are mostly obscured for them, and even for my husband, who has known her 10 years now. That being said, I still have glimpses of her true self from time to time. One visit last fall, Mom & I enjoyed some cinnamon rolls for breakfast. She was pleasant but relatively quiet. After the meal, she needed a bathroom stop. When she reached for the toilet paper, we noticed that I had forgotten to wipe the sticky cinnamon roll from her fingers. We decided it gave a whole new meaning to the phrase “cinnamon buns.” I haven’t laughed that hard in a long time.

 We moved to live near Mom & Dad for 2 years and it was a great experience. It was tiring and sometimes heartbreaking, but also very fulfilling. Being able to help Mom & Dad on a daily basis was invaluable to me because I really felt we were making a significant positive impact in their lives. I liked being available day to day, and in case of emergencies, especially those middle of the night kinds of emergencies. When I could tell Dad was exhausted, I liked being able to come and take care of Mom overnight, so he could get a good night’s sleep; or stay for a few days so he could take a respite trip.

I am glad Dad has been able to retire and be a full-time caregiver. I had a hard time imagining how they would be able to make that work, mostly due to Dad’s need to transition from such a busy work life, to being at home all the time. Although this is nothing like the retirement years I would have wished for them, I think it’s the best it can be given the circumstances. Dad is the best caregiver and advocate for Mom that she could possibly have.

As I read this response from Lisa, I especially appreciated the flashback to Mary Ann’s wicked sense of humor.  I suppose for all of us, losing the person who was without a doubt the center of our household has been the hardest part.  Mary Ann has always been a force to be reckoned with — not in an overbearing way, just by virtue of her personality and her presence.   If it has ever been true about anyone, it is true about Mary Ann — they broke the mold after she was made. 

As I said in the post two evenings ago, we have two remarkable children. Lisa has been a friend to her Mom even through the teen years.  Lisa’s laugh is contagious and Mary Ann could always manage to say or so something that set it off.  She has been a great support to me with her wisdom and her counsel and her concern.

Micah is the sparkle in his Mother’s eyes.  As I mentioned two nights ago, she lights up when he is around.  Micah is the one who was at the hospital when I finally broke down after a week of sleepless nights.  He just held me as I sobbed.  When he was with us during conversations with the doctors, his questions were insightful and probing, getting from the doctors just the information we needed. 

Yes, we have ended up with far better children than we deserved.  By the way, that is my observation only.  Whenever she heard me say that, Mary Ann would claim full responsibility for how well they came out. 

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

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A while ago, I asked our Children, their Spouses and our Grandchildren if they would be willing to write something from their perspective on our situation.  What will come in this and other posts in the near future will be their responses to some questions I proposed.  Our Son, Micah will turn thirty-seven years old in a few weeks.  He is married to Rebecca.  Their daughter, more importantl, our Granddaughter, Chloe, is entering the Sixth Grade this fall.  Here are his responses.

How does it feel from your perspective to see your Mom and Dad’s situation?
I think it’s something that sneaks up on you. Since the changes have happened over such a long period, it’s only in the lowest dips of the rollercoaster when it seems most obvious how difficult things can be for you both. As I’ve read your blog and remembered with you the struggles of the past years, I realize how much has changed. But the passing of time seems to mask some of the changes and challenges, constantly (but subtly) shifting what “normal” is for you both. The hardest part for me is my fading memory of mother as an active, vibrant part of my life. A child’s view of their parents comes from that selfish “how does it affect me” perspective, so when I look back and try to remember the person who taught me how to throw, the person with whom I would cook – and joke! – I yearn to remember more of it, and mourn the loss of those disappearing memories. It’s selfish, to be sure, but I (like any child) want to continue to actively share my life, family, and experiences with both my parents, and I hate that the Parkinson’s and Dementia steals many of these opportunities away.

Stepping back a bit, when I see you both grow older, I worry for both your safety and your quality of life. Caregiving can’t be what either of you planned in your retirement dreams. I wish a wider world for both of you, knowing that your circumstances make for a very small world. I’m glad that you continually push the boundaries of travel and mobility, because they are luxuries you won’t always have. I hope you continue to push those boundaries even as they slowly constrict. You both choose to experience life – not just live it – in spite of your challanges. And while I hope for all these things, I worry about the consequences of living on the edge of safety and security. Having rushed out to Arizona when we thought mom was not going to make it, I can still say that I’m glad you both continue to be as active as you can. And I live in terror of the possibility of dad being unable to care for mom, and what the consequences would be for everyone – including mom. And I hope that there are enough people coming by the house often enough that if something bad ever happened, it wouldn’t be long before help was there (that’s kinda morbid, huh?).

How do you see your unique role in relating to it?
I work hard to treat mom as I always have, though I know it has become harder and harder to do so. The occasional caregiving is difficult for me since there is a palpable discomfort for mom and me when things like bathroom duty come up. I don’t know what it’s like for Lisa, but I know that mom apologizes any time I need to help her with personal issues. I don’t mind doing it at all, except for the emotional discomfort it causes. We soldier through it, and it’s a small price to pay for the quality time we get to spend together when I stay with her. So I guess I see my role as trying to treat her the same way I always have, in an effort to retain some normalcy in our relationship. Now that I write it out that way, it sounds like blantant denial. My intention is to maintain the lightheartedness we’ve always shared, in spite of the obviousness of her daily challenges. Asking her how she’s feeling, and cautiously assisting her and anticipating her needs feels like I’m giving more attention to the Parkinson’s than to her. While I know the two are inseparable, I guess there’s still a part of me that needs to treat mom like mom first, and like a Parkinson’s sufferer second. But I can also tell you that after re-reading this paragraph, it sure sounds like I have some issues to deal with 🙂
 

What would you tell other adult children whose parents are dealing with chronic illness?
Judging by my previous answer, I don’t know what I’m one to be giving any advice!

How do you see the situation impacting the Grandchildren?
I believe that the grandchildren are resilient and accepting – they don’t know grandma any other way than she has been. Chloe once drew a picture of the family, and it included grandma in a wheelchair. I was a bit taken back by it at first, but quickly realized that that was the norm for Chloe – it’s not good or bad, that’s just how grandma is to her. I wish all the girls could know her for her wry wit, her quilting, and her cooking. But I’m so glad that Lisa’s girls got the chance to be around her for the time they were in town with you both. They may not remember it well when they are older, but they still will have had the time.

After I read Micah’s response above, I responded to him that the way he relates to Mary Ann is exactly the way he should.  I see her eyes light up when he comes over to talk with her and kid with her.  He relates to Mary Ann, the sharp, engaging, smart-aleck Mom he has grown up with, not to the Parkinson’s.  It brings out the best in her. 
As any who read this blog today and in the days to come will see, we have remarkable Children, Children-in-law, and Grandchildren.  They turned out better than we deserve.  We are just very grateful we get to have them as our family.