July 18, 2009

Caregiver and Spouse’s Son Responds

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

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. 
 

March 24, 2009

Caregivers: What about the Kids?

Posted by PeterT under Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , |
[4] Comments 

When Mary Ann was diagnosed with Parkinson’s Disease, our daughter was a Senior in High School and our Son was in the Eighth Grade at a school in which that was the last year.  I had gone on ahead in February to begin a new job in a city about a six hour drive away.  Mary Ann and the kids stayed at home to finish the school year while I lived in the new city without them.

It was a phone call.  “The doctor says that I have Parkinson’s Disease.”  In that moment  our lives ended as they had been and a new life began.  It has been a time of discovery for Lisa and Micah.  All of us needed to incorporate this new reality into our lives in different ways, as bits and pieces of understanding of its impact revealed themselves to each of us.  Our experiences have been completely different.  I could no more describe the feelings that Lisa and Micah have had than I could Mary Ann’s feelings.  They alone know the journey they have been on.  I know only what I have seen and heard when they were still at home, and what I have seen and heard of them in the years from then until now.  They are thirty-six and thirty-nine now – both married and along with very well-chosen spouses, raising our granddaughters. 

For you whose family has come to know the presence of chronic illness, make no assumptions about how that presence is impacting anyone else in your family, especially the kids.  It is tempting to project our adult awareness of all the implications of the disease on to our children.   It is tempting to try to insulate them from what we know of the truth.  It is tempting to lean on them and use them for support that they are neither ready nor able to give.  It is tempting to loosen boundaries on their behavior to compensate for the pain their parent’s chronic illness brings into their lives.  It is tempting to allow the chronic illness to draw attention away from them and their needs as they grow. 

Let’s just admit the simple truth.  Parkinson’s joined our family.  We didn’t invite it in.  We had nothing to say about it.  It became part of the family.  Two of the choices we had were to pretend it hadn’t moved in, or make it the center of our world.  I suppose we did some of both, each of us in different ratios of pretense and dominance.  One thing we did (I hope this is the way the kids remember it) is to just deal with whatever came as it came.  One side note is that as her Mom’s illness progressed, Lisa’s career choice of nursing home administration emerged.  She has since chosen to move to a very fulfilling job of the full-time parenting of her two young children. 

The Parkinson’s did impact the kids lives.  Again, they alone know how it affected them.  We tried to be honest about what we knew.  We tried to be rational in making choices about how to live most effectively in light of the Parkinson’s presence in our household.  We wanted our children to see that rational behavior helps in the long run.  We certainly did not spend a lot of time wringing our hands and feeling sorry for ourselves as if our lives had been stolen from us. 

Our children have come to be exactly what any reasonable parent could hope for them to be.  They are self-sufficient but able to be vulnerable, to care about others.  They are intelligent and mature.  Their advice is trustworthy.  They are of impeccable character.  They make friends easily and are true to them.  Others are better off for knowing them and will admit it.  While I understand that Mary Ann and I are biased in our assessment of them, I would bet money, real money, that others who have no such bias and who know them would say the same.

How did the Parkinson’s affect who they have become?  I can’t know this, but I think it has added depth of understanding, wisdom, compassion and a concern for others to a degree that might have come at least more slowly otherwise.  Each of them has found a life’s partner who matches their integrity, compassion, wisdom and concern for others. 

Those of us who deal with chronic illness in our families can feel sorry for the burden it places on our children.  I happen to have worked with Youth for eighteen of my forty years at my job.  While I cannot claim to have conducted a properly constructed study of Youth trends, I can say that those I got to know well, those who had the most, who were given the most, who had the easiest road, also had the most trouble finding their way to happy, meaningful, and fulfilling lives. 

What some might conclude to be an obstacle to a healthy childhood and a joyful life, I understand to have brought health and the capacity to experience deep and lasting joy that cannot easily be snuffed out by problems.

I have concrete evidence of the strength of character that has been shaped in our children by Mary Ann’s Parkinson’s.  Two years before I was able to seriously consider retiring to be a full-time Care Partner for Mary Ann, our Son-in-Law said to our daughter, Lisa, “why don’t we move to your Mom and Dad’s town to help them out for a couple of years until your Dad can retire?”  They lived in a city ten hours from here.  They had a two year old and a four year old.  There were no job guarantees here.  They just did it.    I have no idea how we would have done it without them.

Our Son and Daughter-in-Law moved from three hours away to one hour away.  They have never said what role, if any, our situation played in that decision.  But here they are, close by and ready to do anything within their power to help us.  Micah has come and stayed the night with his Mom.  He has done things no Son should be asked to do for his Mother.  He has done them without hesitation or complaint. 

Our love for our children, our purpose as parents to free them to live full and meaningful lives, shaping their own destiny, makes it hard to accept choices they have made to accommodate our needs.  They have taught us that part of who they are, who they have chosen to be, what they want their children to see in them, is their willingness to choose compassion and concern — actions, not just words. 

What about the kids?  The Parkinson’s, a chronic illness, has brought to them more than it has taken from them.   I say that so boldly, not because they have said it to me, but because their lives testify to it. 

My heart aches for so many who have not had the experience we have had, whose children and/or stepchildren have brought them pain beyond description.  How do you manage to survive in spite of their unwillingness to help and for some their willigness to hurt you?  How have your children dealt with the presence of chronic illness in your family?  How have they been hurt; how have they grown?

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.  Comments are appreciated.