Thursday, November 4, 2010

The Caregiver's Struggle

How much is too much and conversely not enough?

So often these days I am continually evaluating situations. I am always asking these questions.
"Is this a need? Does it require action and how soon? Someday? Soon? Right now or not at all?" Attending these questions are always doubt, guilt and often anger, those are the things I bring to the table which are often enhanced by someone else's opinion.

Taking care of someone who has a progressive disease is a continual balancing act (There's that word balance again). I am told that everyone's Parkinson's is different so nobody can really be prepared  for what is to come or answer the question "What is normal?" So basically you are kind of on your own here to figure it out. Except that many have opinions and feel free to share them. While we are always grateful to recieve support and tips that help make somethings easier we really don't need the guilt trips and criticism unless we are grossly negligent and someone's life could be in danger. No one knows what we deal with day in and day out and unless you are there you can't really comment on the decision someone has made based on things you know nothing about. The other factor is the phsycology of the one who is disabled and thier opinion of your actions. So here you are trying to cope as best you can with 3 contributors to evaluate your performance. You (sometimes the harshest critic) Your PD patient and your circle of friends and relatives, it's quite a crowd.

Balance - this is my central theme in life, That doesn't mean I always achieve it but it is what I strive for and what I measure things by. For instance- due to his disability and dependance on me, my husband gets anxious when I travel or am away from home more often that he thinks I should be. I suspect it's very much like what we call seperation anxiety. I understand his concerns when I travel because I am usually driving (I love road trips!) and we are very gratefull for the cell phones. I usually call him and report in at specific spots along the way so he can keep track of my progress and is reassured that I am okay.  Prior to the trip though we do a little dance about how I shouldn't go and how worried he is (even before I have left the anxiety begins).On one trip I had the use of a GPS unit that he could view on his computer. It made the trip really comfortable for both of us and he was more excited about the tecnology than he was worried about me. Any of you who know Bob will totally understand that :)

This last year I knew that it would pretty much be the last chance to go on any extended trips so I planned a couple of very special ones - including my nephew's wedding in Calif. Because we are resident managers of a ministorage leaving him at home involves more than just being home alone and 4 days is just about his limit of dealing with customers by himself and walking out to open and close the gate each night.He has agreed to try and travel a little bit with me this year, so I am scaling down some of the trips to accomodate him. We especially are going to try to take him to the Port Townsend Wooden Boat Show. This has been a past favorite of ours and we miss the friends that we see there each year. These friends have vowed to help him work things out so that he can enjoy it and they can visit with him. Actually they threatened him with kidnaping if he didn't come and he believes them because they are pirates and quite capable of doing so. The plan is to set him up on the dominant vessel at the show that we all tend to use as our base and let him hold court. This is often the place where the musicians hangout and sing songs and tell sea stories. He will be at the center of the activity. So the balance is knowing his limits and mine, choosing to modify our plans. When to go with him, without him or not at all and being content with those decisions.

Another of my struggles with my schedule is probably driven by his disease and how it plays with his emotions and perceptions. We are fortunate that we work from our home that I do not have to go away everyday, 40 hours a week to a job and leave him home alone in an apartment all by himself with no one to interact with. Yet I have been accused of never being there and leaving him alone too much.  He tells me thaat, sometimes he tells me other people think so or are worried that I am never there ect. The truth is that it isn't true. Yes I have a part time job that I work at a few days a week during the summer. It is neccesary both financially and emotionally for me. However the complaint usually comes when it's been 2 or more weeks since I have left the facility (I don't count grocery shopping or errands for his needs) and I have two nights out during the week ( not 2 nights in a row) for a church function. " You are gone too much and I am alone too much" Major guilt trys to play with me. And so I remember "Balance" and review - Is the complaint legitimate? Is it fair? How much is too much?  this is always a continual struggle for me. Let's be honest, sometimes he will be right, so how can I fix it? Or is it something we just have to deal with because for that period of time it can't be helped? Is his health being jeopardized by it or is he just having a separation anxiety moment and is it sever enough tha I needs to allieviate it?

Blanace... balance.... balanace. Always, always I love him. I will always seek his well being over my own and that does included making sure that I am healthy enough that I will always be there for him when he needs me. That also means that I will endeavor to not be sucked into unwarranted guilt and I will make mistakes. I am human and only one person after all. I hope these musing help those of you who are caregivers and enlighten the people who love them. Have a great Thanklsgiving!