Sunday, August 17, 2008

I have struggled for several hours to find the words to write this entry. Brian ended his journey on Friday August 15 at 9:50 P.M. He fought a courageous battle, one filled with grace, love, laughter and dignity. Brian will continue to live in all our lives. He has touched a community that will forever be changed. The outpouring of support and love by our family and friends is a testament to the way Brian lived his life. Always a kind word, gentle in his manner, a helping hand, a quick smile and loyal to all his friends.

The girls and I want to thank everyone for all their thoughts, prayers and support over the last two years. It has made a difficult journey easier know we had a community behind us.

On Thursday August 21, we are having a Celebration of Life open house at our house from 4-7 p.m. We would like to invite all of you to come.

I say good-bye to my best friend and love of my life. But rest in the knowledge he is with us in spirit and watching over us.

Thank you all again for your love and support.

Julie, Megan and Paige

Thursday, August 14, 2008

Over the last few weeks Brian and I have taken several wonderful drives. We finally made it to Astoria, where we drove up to the Astoria Column and enjoyed the beautiful view. With my friend Kelly, we drove to Detroit Lake. It was a sunny and warm day. Kelly and I chatted and Brian smiled listening to all the stories. This week found us on Highway 99 driving through beautiful Amity and the surrounding area. We ended up taking Highway 47 through Carlton, Gaston and some other tiny towns to Forest Grove. I got the great idea to take Highway 8 to Banks thinking it would be a short cut. Next time I will consult the Thomas guide I had left on the kitchen counter. We drove about 40 minutes out of the way and West of Banks. It was all farmland, so we enjoyed the cows, wheat fields and farm equipment on the road. We tried making it to the Siletz River again but had to turn around because we ran out of time. We left a little later than we had hoped and made it to Corvallis, where we decided we could not make the trip in the time we had allotted. The Mackenzie River is still on our radar screen but we have yet to try. I feel comfortable with a 6-hour drive but the Siletz and Mackenzie are closer to 9 or 10 hours. Last August, when we purchased the van it had 11,191 miles on it, today it has 24,896 miles. The family who owned the van before us purchased it in 2002 brand new. In less than a year we have more than doubled the miles. I have to say Brian and I like to be on the go.

The first Saturday in August was a big day for Brian. His Neurologist Dr. Goslin made a house call. He was very excited. She spent about an hour here talking with Brian, checking on his vitals and answering questions. It was really nice of her to come to us. Going to the doctor’s office is hard both physically and emotionally.

The communication device is working wonderfully. Brian is using it all day and it is great to be able to understand him. So far, no hard drive problems, scanning issues or blips.

Our third hospice nurse is very nice. Hospice is a wonderful program. The Chaplain visits every week, the nurse calls on a regular basis and visits every week and the social worker is available anytime and visits often. We feel supported and cared for during this difficult time.

Not much to report on Brian’s current status. Just about the same since the last journal entry.

Today the sun is shining and it is hot. We have the air conditioning on and Brian is under an electric blanket. He is always cold but the girls and I are sweating. We came up with a compromise and it seems to be working.

Thank you, to everyone for your love and support. We feel the prayers and happy thoughts that come our way.

Monday, July 28, 2008

Friday the 25th Brian and I celebrated 21 years of marriage. It was a quiet day, spent taking a drive, enjoying the sunshine, each other and our girls. The years have gone by fast. I have been going through old photo albums and it is amazing how we have changed.
Last week a couple of friends rented a DVD from the 1960’s shows Dark Shadow, Twlight Zone and Paladin. The acting was old fashioned and hokey but we had a great time watching them. Everyone sat around and talked about how old they were, why they loved the show and their favorite character.
Tuesday, we are taking a drive to the Mckenzie River outside of Eugene. We wanted to go in the winter but the roads were closed. This is river Brian loves and has wanted to revisit for a long time. It will be quite a journey for us. Will take about 6-7 hours. I am taking all the ventilator batteries, plus food and medicine. It will be worth the effort.
We are taking the girls on a drive this weekend to the Siletz River. This is a river we visited in the spring but could not get to the rapid Brian wanted to see. The road is open on the weekends so we are going to try again.
Brian’s health is the same. Not much happening, he seems to be in a stable period at the moment. We are getting our third Hospice nurse this week. Apparently the nurse we had was just a fill in until our nurse returned from vacation. We have really enjoyed our nurse and look forward to meeting our next nurse.
Brian continues to enjoy his communication device. He has quite a sense of humor and loves showing off. He also is able to tell me how he feels, what I need to tell the doctors, therapists and other health personnel. It is wonderful when it works.
While Diane was visiting we went to a beautiful lavender farm. The lavender was in full bloom with lots of bees flying around. The view was spectacular. Mt. Hood in the distance and the valley below. We are lucky to live in Oregon.
Monday, we started out going to Astoria. We drove as far as Columbia City to find out the road was closed due to a brush fire. We turned around and found a very curvy road to Vernonia. I was completely stressed out because it was an old poorly paved highway and Brian’s neck was bobbing all over the place. I hold onto the brace but I could not give him much comfort because of the road. We had to pull over several times to let log truck go by. We both agree it was a beautiful once we got home and relaxed a few minutes.

Friday, July 18, 2008

Technology can be a wonderful thing or a big pain in the #*!@. Two weeks ago Brian’s hard drive on the NEW communication device died. We sent it back to the manufacturer to be fixed and waited impatiently for its return. It is difficult to express the frustration, stress, anxiety, and sadness our family went through. Brian has lost the ability to talk. We use an eye gaze chart and try to read his lips. After experiencing the benefit of the device it was devastating to go back. Lots of tears, a decline in Brian’s mental health, and friends finding it hard to come over. In a word AWFUL. When the UPS man came to the door with the repaired device I thought I would kiss him. He was embarrassed and rather cute about the whole thing. Again, we worked our way through the set up and found out we could not make the device scan. Once again our hero Tandy came to the rescue and fixed the problem. Brian has spent the entire day playing with the device, loving every minute and smiling for the first time in days. It is nice to have Brian back!!

Last weekend our friend Brian Connolly took us to the Portland Historic Races. We spent the better part of a day driving Brian’s wheelchair around the paddock, looking at cars, people and watching warm-up laps. We had a great day! You have to love the smell of gasoline, the thump, thump, thump of an engine and the sweltering heat that radiates off the asphalt. Brian was all smiles. Thank you, Brian C.

Hospice has been a nice addition to our family. We are thoroughly enjoying the Chaplain. She is bringing books, articles, and PODCASTS for Brian to read and listen to. She is calm, well read and challenges Brian in his thinking. Our nurse is wonderful. She comes once a week, to check in, help me problem solve, and remind me we are doing a good job. I wasn’t sure about hospice, but I am relieved and happy we have it.

We continue to take drives; last week we explored the Keizer area near Salem. Beautiful countryside. My driving can be called hazardous. I drive with my right hand on Brian’s neck brace to help support his head, one hand on the wheel and usually one eye on Brian and one on the road. We have learned I need to pull over whenever he talks because I am going to cause an accident.

Brian’s health is gradually getting worse. He is on his vent most of the day; we have increased the pressure support to help give him more air. He has used his nighttime mask during the day. His back muscles are gone. He tires easily and takes several naps during the day. He was sleeping in his bed the last two weeks but has started sleeping in his wheelchair. I am not sure if the wheelchair is to help the pain or me. His hoyer transfers have become a two-person transfer but we are making due with just me for now. I think Brian is concerned and is trying to make things easier for me. He still laughs at the girls and I, makes funny comments on his device and looks at us with wonderful green eyes that say, “I love you”.

Diane is here visiting for the week. It is wonderful to have her. She is cooking, doing laundry, helping with Brian, enjoying her nieces and giving me support and friendship I need because I question my ability all the time.

Thank you Teri for all your help!
My last thoughts for this entry: Remember, this life is not a dress rehearsal. Live each day to the fullest.

A solemn thought: this is no way to live or to die.

Saturday, June 28, 2008

Hospice, communication device and thoughts

On June 23 we officially became a part of the Providence Hospice program. We have met with an intake nurse, our assigned nurse, our social worker and the chaplain. Everyone is wonderful. The nurse will come by the house twice a week to start with just to get a feel for Brian and check on his medication. The social worker has provided phone numbers to different home health agencies. We are not ready to hire anyone or bring additional people into the home. Hospice provides counseling for the family during the illness as well as bereavement. I am going to meet with a counselor who specializes in counseling children. Both girls are not interested in counseling at this time but I could use some suggestions to make it better for all of us. Brian and the chaplain are going to continue their discussions next week. She is wonderful. I have to admit I feel some relief with Hospice. The main reason is when Brian ends his journey here on Earth, it is an easy phone call to Hospice and they make the call to the funeral home. As a family we avoid the police, an investigation into the cause of death, the medical examiner and who else might become involved. It will already be hard enough without extra people asking questions.

The communication device came a week ago. At first we were disappointed, it did not perform the way we had thought it would. Brian has spent hours and hours programming the device. The saying around here is Brian looks at a computer problem and thinks, “Oh, boy a problem, lets fix it” I look at the computer and all the problems and say “lets get rid of it!!!” Our friend Tandy came over and got the scanning working and the switch access where it needed to be. Thank goodness for Tandy!! The best part of the device is the time Brian has spent on it. Since he lost the PC he has had a hard time filling his time. The machine has replaced the PC and given him new challenges. Some of our favorite sayings “Are you listening to me?” “Do not interrupt me when I am talking” “Are you talking to me?” and my favorite “I love you”. Brian lost the ability to use his voice last week. It has been very frustrating trying to talk or understand what he needs. Even with all three of us listening to his whispers we often cannot make out what he is saying. He has programmed the device to assist us all. Plus it is nice to hear Brian’s humor once more. He is a funny guy.

Brian has faced this disease with grace, a positive attitude and a no bad day motto. I have to say it has not been easy. We have good and bad days. I admire Brian everyday with his positive outlook, his smile and his eyes. They help me get through most days. I find I am the one who gets frustrated; his neurologist told us the other day- Life should not be so hard. Boy, is that an understatement. It breaks my heart to see what this disease can do to a human body. I am thankful everyday Brian sees the positive things in life. He is amazing.

We continue to take drives, see friends, laugh out loud at the silly things, smile, cry, enjoy our family and love each other. Until next time-hugs to you all.

Wednesday, June 18, 2008

My first journal entry

It seems odd to be writing in Brian’s journal. However, it is necessary for me to take over the task. Brian’s ability to communicate is gone. We have disconnected his cell phone, I answer all his emails with his ever-present gaze at what I am saying, and the girls and I are the only ones who can understand him when he speaks. This has caused much frustration and what we call communication break down. Amazingly, he has kept his spirits high, always has a smile, and has his wit about him.

On May 12th we went to our last ALS clinic. After much discussion and thought our Neurologist suggested and we agreed to only see her in the future. The disease has progressed past the point of seeing the physical therapist, occupational therapist, speech pathologist, nutritionist, respiratory therapist and social worker. We will see Dr. Goslin and handle any medical needs through her and her staff.

By the end of the week, we will be part of the Hospice program. In May Brian’s breathing had deteriorated to the point where they did not test him. The Pulmonologist thought it was some where between 10-15% of normal. Down from 24% in March. We have mixed emotions about this new stage in our lives. We are scared, sad, numb but also hopeful they will be able to help Brian be more comfortable. At the moment he has to sleep in his wheelchair because of severe back pain. The wheelchair has more adjustments than the hospital bed so we can make him changes to his position quicker and easier. He is on his ventilator about 22-23 hours a day. The vent-as we call it, it attached to the back of his chair to make moving around easier. Yesterday, his communication device arrived. We spent several hours today trying to make the device work. The easy step-by-step instructions and on-line help aids are frustrating. We both agree it would be easier if Brian did not have to rely on me to work it. I am not much for computers or figuring out new systems. The device will be attached to his chair so he will be able to use it all the time.

Over the last month, we had some wonderful visits from Brian’s sister, brother and mom. It was great to see them. We will treasure those visits always.

Recently a very dear friend was reminded by our situation that this life is the real thing. It is not a rehearsal. This is the most important lesson you can get from our journey.

Wednesday, May 21, 2008

Journal Entry 23

Clinic, Old River Ramble

Monday a week ago Julie and I went to our last clinic. The news wasn’t really that bad because we went with low expectations. At the end of the day we agreed to meet with the neurologist every six weeks, and with other specialists as needed.

In particular, we are working with the augmentative communications guy to get a special device that will talk for me. That should take about a month. (I can no longer talk and I can only whisper for a few hours in the morning. The family does reasonably well with lip reading but the process is tedious and unsatisfactory.) After the equipment arrives I will probably go into Hospice care. I qualify for Medicare on June 1st.

This Saturday was the Old River Ramble, a 10K, 5K or 1 mile event that began and ended on the grounds of Cedaroak Primary School. Julie guided my wheelchair while my sister Diane and sister-in-law Teri pulled my breathing equipment in a wagon to get me through the 1 mile walk. Race fans cheered me on the last hundred yards to the finish line! I saw people I have not seen in a couple of years. It was a lot of family fun.

This week, Julie, Diane, and I went to the Crystal Springs Rhododendron Gardens. Lightly visited this day, the gardens were a peaceful way to spend the last day of glorious sunshine this week.

I am dictating this journal entry through my sister, Diane. As noted above, my ability to communicate is about nil. My journal entries will appear very infrequently from now on.