A few posts ago I promised to include responses from our Grandchildren to some questions I suggested.  Tonight I am keeping that promise. 

The first two below are Abigail and Ashlyn.  They are the children of our Daughter, Lisa, and her Husband. Denis.  That family moved here to spend the last two years before I retired near us so that they could help us.   Just the natural attrition over the years had begun to diminish the number Volunteers from our church available to be with Mary Ann while I was working far more than forty hours a week, including evening meetings.  A year ago, when I retired, that family moved back to their home some ten hours away.  The girls got to know Mary Ann well during that two years, since she was at their house or they were at our house two days a week.   Abigail is now 6 and will turn 7 in November.  Ashlyn will turn 5 in a few days. 

Chloe is our oldest Granddaughter.  She is the Daughter of our Son, Micah, and his Wife, Rebecca.  Chloe is 10 and will be 11 in November.  That family has lived about three hours away until moving only a little over an hour away a few years ago.  Chloe can remember Mary Ann from a time when she was much more communicative than she is now.  She has always been ready to help Mary Ann whenever there was something she could do. 

Her are the Grandchildren’s responses:

Abigail’s Notes: 

What do you like about Grandma? I like her clothes.  I think her socks look silly. 

What do you think about when Grandma stands up on her own or when she faints and Grandpa or one of your parents have to go over and hold her up?  I like bringing the wheelchair over.  I think it hurts when she hits her head.  She gets a bump on there. 

What would you like to say to Grandma?  I hope you feel better Grandma.  I wish Grandma could run and play with me.  We would go to the movies and go to the swimming pool and the park. 

If one of your friends had a Grandma that was sick like yours, what would you tell them to do to make her feel good?  Give her some medicine and do what she wants them to do.  Like get her some juice and get her wheelchair when she needs it.  Bring her food in bed.  Let her sleep in.  That’s all.

 Other comments: Grandpa, do you want some help with Grandma? 

 Ashlyn’s Notes: 

 What do you like about Grandma? She’s nice.  I love her.

 What do you think about when Grandma stands up on her own or when she faints and Grandpa or one of your parents have to go over and hold her up? I feel sad. 

 What would you like to say to Grandma? I love you Grandma.  I hope you feel better.

 If one of your friends had a Grandma that was sick like yours, what would you tell them to do to make her feel good? I would tell my friend—I’m sorry.  Tell your Grandma that you love her.

Chloe’s Comments:

grandpa,  what i like about grandma is that if she says that she is going to do something, she sticks to it and never gives up. whenever grandma fainted when i was little i would panic majorly, but now i understand her illness and now know to react in a calm manor. right now all i have to say is grandma to just keep going. if i had a friend that had a very sick relative like my grandma i would just tell them to keep there spirits high.

Needless to say, we are very proud Grandparents.   I think we and their parents would agree that while this hasn’t been easy on the girls, they have grown in understanding of the needs of others.  Hopefully, they will be better people when they grow up than they would have been if they had not had a Grandma who needed their attention and their help.  

If I live long enough to hear about it, I will be very interested in what they remember when they are young adults about these years, what they recognize to be the impact on who they have become. 

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.

Advertisements
When I asked ourt adult children to share some thoughts on their view of our situation and their role in it, I included some questions for their spouses in case they felt comfortable commenting. 
Our Son-in-Law, Denis (yes with one “n”) chose to comment.  Our Daughter and Denis have been married over ten years.  They are the parents of two of our Granddaughters, Abigail (6) and Ashlyn (soon to be 5).   Denis is the youngest of ten children and is great with children, having had very many nephews and nieces to deal with over the years.  His moral compass is strong and healthy.  He initiated the decision that resulted in their family (Lisa, Denis and the girls) moving here (from Kentucky to Kansas) to help us out for the last two years before I retired (which is now a full year ago). 
Here are his comments:
How do you see Mom and Dad’s situation impacting Lisa and Micah respectively?
Since the Parkinson’s has been around so long, I think Lisa has accepted the presence of the disease.  Obviously she would love nothing more than for the disease to just go away, but that is not likely to happen.  It is very hard for her to see her Mom in such condition when in the past she was so vibrant and quick witted.  She is mostly concerned about the impact on Pete and the difficulties of full time care giving.  Pete could be adversely affected physically when picking up MaryAnn after falls.  He could also be affected mentally from having to give constant care, 24hrs a day without much personal time.
What do you see as your role in the situation?
I feel I need to be as supportive as possible to Lisa…and MaryAnn and Pete.  Hopefully our time in Topeka was a good help in caring for MaryAnn.  I think it certainly was good for me, Lisa and the girls to have all the extra interaction with MaryAnn and Pete that being close by allowed.  Abigail and Ashlyn were able to create a closer bond to their grandparents and hopefully bring a little extra cheer to household too.  It has always been hard for me to communicate very well with MaryAnn given the disease.  I never did know her before it took over so much.  I like to think that our sense of humor would overlap a fair amount.  Both of you are most welcome to move to Louisville at some point if you are so inclined.  We could be of more tangible support that way.  I think my role is mostly to be a supportive son-in-law to Pete and MaryAnn.  Be there for support in times of critical need…mostly in sharing Lisa’s warmth, energy and time with you.
 
What would you tell others in your position?
Educate yourself about the symptoms of the disease and the side affects of the medications.  This will help in understanding the behaviors of the sufferer and their needs.  Be as helpful and supportive as you can in those times when a crisis comes up.  Also recognize the burdens of the caregivers and the impact it can have on them.
 
How do you see the situation impacting the Grandchildren?
Like me, Abigail and Ashlyn do not know Grandma Tremain any other way than with Parkinson’s.  Yet I can’t help but think that interaction between MaryAnn and the kids is very valuable to them both.  I really think the girls see MaryAnn as “Grandma Tremain”, not Grandma who has a bad disease.  I don’t think they differentiate her in that way.  Its wonderful to see them accept MaryAnn as she is.
As is obvious when reading the comments above, not only do we have remarkable children but they have married remarkable spouses.  Our Daughter-in-Law Rebecca has impeccable integrity and common sense.  She is not only a support to our Son Micah but a caring presence to Mary Ann and me, a joy to be around.  She, Micah and our oldest Granddaughter, Chloe, live a little over an hour away from us.  Both Rebecca and Denis also add something in very short supply in our family — height.   For that we are very grateful. 
When Chronic illness enters a household, everyone is affected, spouse, children, grandchildren, siblings, parents, friends, all those connected to the one with the disease.  In a sense, everyone has the disease.  What is needed is openness, honesty, and support for one another as each is impacted in some way.  We celebrate that to a person, those who are family and friend to us have stuck with us and done whatever they could to help us and one another negotiate the journey we are on. 
Stay tuned.  A post in the near future will contain the responses of our Grandchildren.  From the mouths of babes!
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.