Changing Roles

When Bob and I started out married life he was in the Navy and as a Navy wife whose husband was often out at sea in the days prior to all the electronic gadgets we have today, I was the one who handled the finances. Also Bob first became dependant for me to drive him when he had an adrenal gland tumor about 12 yrs ago and because of the symptoms he was unable to drive. so as we progressed into the diagnosis of Parkinson's and later MSA I did not need to exert control to be involved in his care, Dr.s visits, medications, finances, insurance and driving. I have heard many stories about interventions regarding driving, and being shut out of the loop regarding meds and care. Fortunately we did not have these issues. So I thought I had gotten off easy in regards to becoming the primary decision maker.

But I was wrong. Even in the best circumstances changing roles can be very difficult. Case in point - we need a different car and we found ourselves in a power struggle.

I had done a lot of research to assertain what would be the ideal vehicle for us and had settled on three models. A Toyota RAV, a Honda CRV or a Subarau Forester. I wanted a AWD SUV wagon. One that would be fairly low to the ground so Bob could get in and out easily and that had a cargo area I could easily pop the scooter into. Finally this was the first car that I would be purchasing for me. It will be the car I have when bob is no longer here. I needed longevity, easy maintenance, the approval of my mechanic, and let's face it Ladies a certain "Style" to it. No van for this Chica. I want a pretty color, style, paint and upholstry in good condition and.......a Sunroof.

As Bob started to travel more and began to see the need for a new vehicle He started expressing his opinion. As we would travel to church and other junkets I would find myself rejecting multiple declarations regarding what kind of car we should get. I had to constantly defend my choices. I had already spent many hours on the research, Bob was just getting started.

Now I want you to know that Bob is a very intelligent man and he has some great input, but what a man wants in a car and what a woman wants are DIFFERENT. Bob is also very much a function man and not a form guy. Long ago in our marriage I had to put my foot down and tell him that I didn't care what contraption he jury-rigged up but my rule was it had to look good. I felt that these conversations were re-inventing the wheel, I had already done the research and come to a conclusion and I admit to some annoyance that he wouldn't just accept my results.

Part of this strugglei s I am begining to learn how to make these decisions  on my own. There will be coming a day when I won't have Bob, with his expertise, to help, and I am begining to excercise these new skills.This is a time of transition, I am learning and he is having to let go, this is never easy and the reasons behind it greive us both.

So- the resolution has been reached.

I took Bob to see a couple of the cars I was  looking at. He gets it. I no longer have to defend my choices and...... He has become a computer internet fiend (actually he always was) He spends hours looking for cars that fit our parameters and e-mails them to me, I review, reject and then make appts to go see the ones that make the cut. He comes with and we look at the car together. He feels and is part of the process and I am no longer justifying my decisions.  So stay tuned to see what we wind up with.

MSA Life - Bits and Pieces

Sorry I skipped posting in April but life had a way of absorbing time lately and now I find myself in May.

We had lots of "Stuff" happening. In April we traveled to my folks house for a family celebration of my Mom's birthday and Easter. Bob's 18yr old cat Spike became ill and passed away. Bob traveled with his scooter on the Bus. We had a freak snowstorm that caught my out of town sister unaware, and so on and so on.

Nothing seemingly major and yet these things affected us or had some sort of impact on our lives.

The Huge thing was the cat Spike. We have had two cats (litter mates) Marlin and Spike for 17.5 yrs. We are sailors so we named them after a nautical tool used to splice rope. Marlin tended to be

Surveying his domain

Spike's favorite place to be 

my kitty and Spike was Bob's pal. He followed Bob everywhere and was quite a character. As a child Bob never had many animals and so having one get really old, sick and then reach the end of his life was very hard on Bob. I have been fairly worried about how this would affect Bob. We become so attached to our furry friends and often they will reflect our own health, secretly I was hoping the cat would outlive Bob. towards the end of March Spike became ill, had several visits to the vet, the ER vet and a few overnight stays, over a period of three weeks we waited to see how he would do. He was doing okay thanks to the meds he had received, but he had lost a lot of weight and as the meds wore off he declined even more. During this period of time Bob also seemed to struggle, it was very hard for him to see Spike decline and he tended to project the cat's health onto how he was doing and so he also seemed to struggle with his health.

After Spike died, Bob and I had many talks about him. We talked about his adventurous life and how well he was loved and loved back. He was truly a great cat. Bob has actually done better now that the drama is over and while he really misses Spike he seems to be doing better now that the stress of watching him die is over. so I am glad to say Bob has overcome and is not having any serious decline in his health that I was so afraid of. We still have Marlin, who appears to be hale and hearty so the house doesn't have a large vaccum of furry fiends..oops friends.

I bring this up because we are dealing with this disease and besides the "Disease" related stuff we deal with we often are confronted with how everyday life enters into the equation. It just takes everything to a new level and we have to be aware of how it affects us and be wise in how we handle it. Be aware - we can't always assume that "normal" stuff is benign just because it's "normal".

As some of you know Bob got a brand new scooter in Jan and it has been a really wonderful addition to the tools we have to help Bob. It was especially helpful as Bob was able to get on it and get out of the house to help distract him the day Spiked passsed away. He was gone for about 5 hours, he did

check in so I was tracking where he was. I'm so glad he had that outlet so he didn't have to sit at home and brood.  He has become very adventrous with this scooter. Recently he had a meeting he wanted to attend but I had a schedule conflict with work and the time the meeting started. So he took the Bus!!!! Oh My Broccoli!  He found out that the buses would accomadate his scooter and the one that stopped on our corner would take him to within 3 blocks of the hotel where the meeting was being held. So he was bound and determined to go. I must say I was very nervous about this whole thing but had to buckup and support my husband in this. His independant spirit often challenges me and I am so glad! I did walk to the bus stop to observe the process and glad I did because this gave me comfort in knowing that the bus driver had a lot of involvement in getting him on and off the bus and  because of this would be in charge of making sure he got off at the right stop. I had been worried that he would miss his stop because of not being able to indicate his choice or he would get confused and not know when it was coming up.  Bob is a very smart man but this disease can make your thought process freeze, then complicated things can get really compicated.

He succcessfully made it to the meeting and I met him there later and brought him home YAY Bob!

Lastly we have been doing more traveling and have several trips planned this summer/fall. It went so well the last few times that I kind of got sloppy and as a result the trip to my folks didn't go as smoothly. I forgot some items that turned out to be very critical- not life threatening but it limited our ability to enjoy the get together because we had to struggle with certain issues. After talking to my mother-in-law about this she e-mailed me her travel packing list. She is a very organized traveler and she and bob's dad travel a lot. I appreciate her advice and help and have created a travel packing list modified for Bob's specific needs. I am also trying to have a prepacked back with things I can duplicate and have packed ahead so that it won't take me five hours to get us on the road and I won't be leaving critical things at home that can't be purchased or replaced easily.

Other tid bits - Bob had a fall in the bathroom in the middle of the night and a few days later had a very bad choking episode because he had aspirated saliva into his lungs. These are all very scary things and have pushed me to find out more about how to deal with these things. I have more research to do but I encourage all of our caregivers out there to learn basic first aid, to know how to evaluate for concussions, to help with issues that come up specific to your disease to know when to call for help and always err on the side of calling if you have any doubts. It always seems to happen in the small hours of the night and to have a plan of action helps keep the fear and stress at bay. i now I do better when I have knowledge and a clear plan on how to react and deal with things as they come.

So that was April. Hope you all have a very beautiful Spring.