This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.


Sunday, September 14, 2008


I’ve always been someone who considered fairness important. My mother’s mother favored her brother; my mother compensated by being compulsive that everything should be divided equally. I don’t think that is always the fair approach, but I do value fairness very much.

In fact, I didn’t vote for Jimmy Carter when he ran for a second term because I couldn’t bear his response when he was asked whether it was fair that poor women couldn’t get abortions because Medicaid didn’t pay. He said “Life is unfair.” No! If something is unfair, try to do something about it. My hero is Paul Farmer (who runs a medical clinic in Haiti) because he isn’t willing to accept that the world is unfair, he takes action to make it different.

My struggle now is with having to do more than my share. Instead of appreciating the small things that John does do, I fall into resenting that he doesn’t do more. It isn’t fair that I do lots of little things (like installing an arm rest we bought for his car) because he is so slow or might forget or will take weeks to get around to doing it. It isn’t fair that I have to handle all financial decisions and all family travel. It isn’t fair that I have to handle the major house issues. And then John talks to a contractor who comes to the house and thinks he is doing his part. Sometimes I wish he wouldn’t try to help, either because he makes too many mistakes or because I don’t want him to get credit for helping when his help doesn’t reduce the burden I feel. It is the responsibility that makes me feel most burdened, and now I have the added responsibility to double-check everything he does.

I don’t want to be like this. We went to Atlanta yesterday, food shopping and out to dinner. The trouble is, I noticed how he messed up when I needed directions more than I enjoyed getting to some favorite stores and eating Vietnamese food. It is childish to keep thinking: “It’s not fair!” But how do I convince the part of me that has worked so hard for fairness that it isn’t important any more?


Spouse said...

Refocusing isn't easy- but a couple Ideas for you to consider.
1. You have successfully raised 2 children to almost adulthood. To do that you needed to provide them with lots of time and attention, from hands on care to making and taking them both to medical appointments, teacher meetings, music or sports practices,and scheduling sitters to be sure they were cared for 100% of the time every day. To do that as a working Mom, you had to be very organized, but you probably took planning those chores as your need for each came into view. I advise you do the same in preparing for the future.
2. Maybe you are concentrating too far in the future ? GW was diagnosed LBD 8 years ago. For 7 of those years he was able to live with relatively few changes in our lifestyle. John is still doing so many things !!! He can drive to the store to pick up that one Item you missed or are out of at the last minute. He can occupy his time by going where he wants, choosing his own music or TV and can do his own e-mails on the computer. John may have even more good years with the progress is being made everyday on the medical front. I do advise that you pay close attention to his medications to be sure that the Dr.'s orders are being followed- and be aware of his reactions to them each.
3. There should be no reasons for you to change your life & career plans. As John requires help, there are helpers for hire that will not cost you the amount of the salary you will make. I advise you to hire a housekeeper now, at least part time, and find something fun to do with John at least once a week.
When life gives you lemons--make yourself some Lemon meringue pie!! !!!

Joann said...

Most every person and every family has some awful stuff in their life. For me it was cancer. For you it's dealing with a bunch of different things. Bottom line is most everyone has crap in their life. Most of the time, we don't get to pick what crap falls into our lives. In my experience you either (1) deal with it, or (2) go crazy (which is not dealing with it). I miss my breasts, but I like living, so it's just the trade-off I had to make. But I miss my breasts. I miss my hair being 18-inches long and now being happy it's about 1-1/2 inch long. I coped by making the tragic things comical. Laughing is lots better than many of the alternatives. Laughing doesn't mean I don't sometimes cry. Laughing doesn't mean I don't feel angry sometimes. Laughing doesn't mean I'm brave. It just means that my soul needs the humor more than it does dwelling on the "what if's." Chemo wasn't my favorite thing to do, but it beat the hell out of dying prematurely. Fair? Fair? When is tragedy fair? Somewhere in Matthew it says something to the effect that: the wicked and the righteous both get rained on. Well, that is how it is. Rain falls in every life. And that's how it's fair. Everyone has crap. John didn't pick his disease, didn't do anything to encourage it (like smoking and lung cancer) he just got rained on and his rain was LBD. He has a name for his/your current variety of suffering. Find ways to laugh at it. Name it like I named my tumor (Elvira). Make a quilt that represents the disease and figure out how to accept it. Use clay and make a face that represents LBD and then slap that face or stick pins in it. Do what you need to in order to find the silly, the humorous, and the ironic. It's one way to hold on to sanity. I know you'll find your particular way, but I recommend humor. It's in just about every situation. Laughing is healing....in my experience. It doesn't make light of the situation, but it sure makes it much more tolerable. Just my opinion. Take what works for you and ignore what doesn't.

Anonymous said...

Fair isn't always possible. It's not fair that John has this disease. It's not fair that you, and he, have to deal with it. It is all a part of God's plan for you, John, and your family. We don't know why, and we may never know why, but we have to learn to deal with it. If you love him, don't be angry that you have to do things for him that he is no longer capable of doing. Because he is unable to take care of the things he used to does not mean that he loves you less. Remember the promise of your wedding vows, pledging yourself "unto him in sickness and in health until death do us part."

Allow him, in fact encourage him to do all that he is capable of doing. However, protect him from the things that he might try doing that could hurt him. Don't sweat the small messes he makes. They can be cleaned up. However, if he no longer can make appropriate decisions such as when it is no longer safe for himself and others when he drives, that is one thing that you MUST keep him from doing. If he is involved in an accident, whether it is his fault or that of someone else, and it is learned that he has PD, he will be considered the one at fault and you could be sued and lose everything. I know it's a hard, bumpy road to travel and sometimes you feel a little lost but you do what you must do, even if it seems unfair. Cherish the time you have left with him and above all remember the wonderful times you have shared in the past.

Good luck on your PD journey and may God bless both of you.