Tuesday, December 28, 2010

Failures, Fortitude and Flexibility

  Failure, Fortitude and Flexibility
The last few weeks have been a lesson in failure, fortitude and flexibility. Bob has had some really rough times. His blood pressure was all over the place going from really low and blacking out to fairly high. He has been stuggling with his medications and he has been suffering with henorroids and Dystonia (posture and neck) problems.
     This has resulted in:
  • A ride to the ER in an ambulance
  • A cancelled trip with my  Ladies bible study group 
  • My having to work the Ministorage full time
  • Multiple Doctor visits
  • Cancelling our christmas in Portland plans
  • My total meltdown
Unfortunately on the plan side it messed with MY plans tremendously and this had an unfortunate result in my totally selfish and ungracious meltdown. For Bob it involved a lot of pain, scary moments and sadness that he was experiencing all these things.

Failure - fortunately this occured at the begining of this current episode. I can come up with a grand explanation of my actions but it all boils down to I failed Bob.
  • I was tired, it was late on a Friday night and there wasn't any one to call and ask for help or guidance.
  • I did not know what to do to allieviate his suffering and was very frustrated and overwhelmed
  • I was trying to help him and solve the problems all on my own power, skills and knowledge
  • I had to cancell an outing that I had been lookig forward to for a very long time
  • I had to take over his duties at the ministorage which limited my freedom to come and go
Bob is a very difficult patient during these times and it is very hard to find out what he needs and what is specifically wrong. I am trained in triage and yet he seems to defy all my efforts to address his problems. I took a very hard and unsympathetic line with him and I wasn't very nice. I'm sure in his vunerable state he became fearful in the face of my fierceness. All in all niether one of us was at our best.

Fortitude- Fortunately after a night's rest (as short as it was) I saw things more clearly. We had achieved some temporary solutions and reduced some of his difficulties for the time being. I viewed the events with a harsh eye as to my behavior and was repentant. Throughout the weekend I was given some very clear messages. Basically God revealed to me in several ways (including the Sunday sermon) that I had tried to do all this in my own strength and that was totally inadequate. I needed to rely on Him and His strength when I was faced with these kinds of situations.

The following weeks I have been stronger, less overwhelmed and tired, more productive and I have actually found some encouragement in the Doctor's recommendations. It hasn't been any easier, he still required some intensive care, and as I mentioned earlier we had to go to the ER - but I called a friend who is a volunteer paramedic and she came with her ambulance to transport him, to smooth my way and to help guide me into the appropriate choices. I really can't believe how hard it is sometimes to call for help and to accept it. Sometimes you need someone to take over until you get your balance and start thinking clearly.

I have started going into these episodes by calling on God and asking him to take over, guide me, give me strength and wisdom, to help the Dr.s  to really see Bob and what he needs. Beth Moore an amazing bible teacher for women, shares that she carries index cards with inspirational scriptures specific to a particular situation. I have begun to create and carry these my self. they are encouraging as I sit in the waiting rooms or exam rooms to remind me who is really in charge and that he is dependable. This is where I find fortitude in relying on God and letting him take over, not trying to rely on my limited strength, skills and knowledge.
I let him shoulder the burden and I am a better partner to Bob in doing so.

Flexibility- So I had to reaarange my schedule as I took over the operation of the Ministorage. I was required to be on site from 9-6 Mon thru Sat. Any errands or places that I wanted to go had to be after that. I wasn't able to fill in as a sub for my part time job. I had to cancel my plans to go to the Christams town of Leavenworth in Eastern Washington with the ladies from my church and because of his blood pressure episodes we cancelled our plans to drive to Portland for Christmas. Flexibility - I had to become flexable and not only that but content and at peace with this. I did, I was and I am, I settled in at the Ministorage and I have a really clean house, I was able to spend time finishing my christmas cards and mail my gifts. My house was already decorated and filled with Christmas and we were invited to have Christmas dinner at a home that Bob is comfortable visiting. All in all we have had a lovely holiday, slower and more private but very pleasant and precious none the less. i find I am content and at peace. In the next few months Bob will be having a surgery that will require a lot from me during his recovery and then a visit to a clinic in Portl;and and some other proceedures. I know that the next few months are going to be taxing in every way that you can imagine, but hopefully now I have some tools to help me through those taxing moments. I know who I can and must rely on. John 3:30 says "He must increase, but I must decrease."

     

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!

Wednesday, October 13, 2010

Spa night - Creative adjusting to life with Parkinson's Disease

I had not reached the ripe old age of 50 when I was given the news that my husband had Parkinson's. So I still feel as if I am a reasonably young wife with maybe another 40-45 yrs left in me. I am relatively healthy, active and stronger than most women my age. Bob calls me "Forklift Suzie" because of the weights I can lift when I am moving freight off the store's truck or remodeling another store. We had planned to start a boat delivery service shortly after we recieved our Captain's licenses. Bob actually recieved his but I am still waiting to accomplish enough current sea time. That however has been put on hold for now. So at that particular time we were certainly not focused on a more restricted life but looking forward to more outside the box adventurous life path. It was like a Semi-truck hit us blindside, we did not see this one coming at all.

We faced a very steep learning curve on how to cope with this disabling disease, as we now realized that some of the things we thought were temporary difficulties were actually permanent obstacles to overcome. Balance seems to be the best word to hang onto during this adjustment, Humor and Creativity would be the other essential components needed to navigate these muddy waters.

Since PD is a degenerative disease we will continue to have to modify and adjust; but in the begining it was mind boggling and we swung from one extreme to another. The problem seems to be how much do we do to compensate for this new life? The best analogy would be how much do I help him? What does he really need and what do I need to let him do by himself. So it quickly became apparent that there were certain things that he needed help with such as preparing his food so that he could manage it, using spoons bowls and straws. There were other situations where I was being too helpful, like getting in his way to help him get out of the car when really all he needs is for me to be ready to help if he asks for it. Last but not least and certainly embarassing to admit it, there were areas I was totally missing that he needed help.

One of the areas that I missed was Bob's regular hygiene routine. Bob is a very modest man and for one reason or another I did not notice that he was struggling with some very basic tasks and he was modifying his routine to compensate for his difficulties. He was too modest and /or embarrassed to bring it to my attention and I was too occupied by everything else to notice, frankly I was probably not looking for another task to add to the numerous tasks I was already taking on. However it began to overwhelm his abilites to cope.

It started fairly innocently- I gave him an Mani/Pedi. He has had problems with his skin since he was in the Navy and he was having some issues with his feet so as a lark I gave him the full treatment. It was fun and I was still oblivious. Shortly after he kept asking if I could do it again and I complied. By now I had noticed that he had a real dandruff problem and  flaky skin in his beard and face so I suggested that he exfoliate his face and scalp. I offered to show him what to do and declared that we would have a full on "Spa Night".

Once I embarked on the adventure of "Spa Night" I became aware of some of his challenges. His hands are no longer as coopereative as they once were and washing had become extremely difficult.The hands are stiff and the fingers don't function well as independant unit, this meant that the movcement we know as "hand washing or wringing" was nearly impossible for him. Also because of his difficulties he was unable to maintain his routine and had longer and longer lapses between sessions.

Well when I began "Spa Night" I had also become very involved in the process and was enjoying it. So after recognizing his needs I decided that this would become a regular event. One of the things I noticed was that his skin was improving and it was a fun and intimate way of caring for more that just his personal hygiene needs. Every couple needs fun, romance and intimacy in thier marriage and this was a perfect way to do so.

At first he was a little relunctant to accept the help. He was embarrassed by what he referred to as being bathed by another person. He felt like an infant, he said.Well being the fun creative and flirty person that I am  I resonded with " Honey- it's Spa Night - we exfoliate, shampoo and condition, and get slippery with soap. Some men pay for this service but you get it compimentary with marriage."  This seemed to put it into a perspective that he could accept. He now looks forward to "Spa Night" and we make sure it's a regular part of our routine.

In the need to provide help to our loved one we can often become overburdened with the drudgery of it all. We can be desperate for a little fun and "Me" time. I offer this as an example to help both of you out. If there is anyway that you can provide the help needed in a fun way it will produce amazing benefits for both of you help keep your marraige balanced and healthy.