IT IS ALL ABOUT COMFORT AND SAFETY

Heidi started her blog to help inspire, she talked about ALS in a very open honest approach, its affects, what we/she did to try and help slow the process and how she was able to adapt. As Heidi adjusted, so did our family. I want to now talk about what it was like these past 8 years from the husband's point of view, the things I did and how I adapted to our life as husband and wife. If anyone ever has any questions, please feel free to e-mail me @ goodswak@verizon.net

For me, it was all about finances and our capability to provide what Heidi needed. With every trip down to UCLA (every 6 mos) Heidi had lost bits and pieces of mobility and with every trip came the same recommendation..Figure out how you are going to keep Heidi safe and comfortable as the disease takes over her body.

At this time, Heidi had a PPO insurance carrier through her work, so there were no issues with seeing doctors that she needed to see. Getting the "durable equipment" we needed for her comfort and mobility was a different story.

One thing you have to be wary of, there are a lot and I mean a lot of unethical companies out there that will promise you the world, oh don't worry about your insurance covering this, we work with them all the time and will make sure that things will get covered. This only happened one time, but it was a $5000.00 one time that hurt. We had bought our beds with that promise and after 6 mos. of wrangling and finally no call backs from this company I realized I had been duped. The beds by the way were one of our best investments into Heidi's care, oh yeah the owners of that company were bought out by a larger company that I understand are a tad more reputable. Heidi talks about this bed in one of her earlier blogs

Besides the bed, the next biggest thing was her wheel chair..my recommendation is, work with a company that is local and or within a 1-2 hour drive...service capabilities are huge. Next make sure that company works with your local MDA chapter. Superior Mobility out of Ventura CA was the company we ultimately went with, as they were one of the MDA "closet" providers..As people pass,families would donate items such as hoyer lifts (we were loaned an electric system to use) it was on loan to us for 6 years. I recently gave it back, along with Heidi's wheel chair and every other durable piece of equipment that made Heidi's life better. Chairs are extremely expensive, this is an expense that most insurance companies will only pay for once.

 MAKE SURE YOU GET A CHAIR THAT WILL ADAPT AS YOUR DISEASE PROGRESSES

The chair must have belts and straps to maintain stability in the chair, it must have the capability to change from hand control to other methods for control, one method is the puffer where you puff into a control mechanism to steer, go forward,back etc. Heidi still had great control of her head, neck but her breathing was starting to get shallow and labored, so we went with the head control mechanism instead. The chair also should have a hand control for the caregiver, as over time, all body control will be lost and it will be up to the caregiver to motor you around.

Heidi's chair

After having this chair for 4 years, Heidi and I had only a few regrets. 1) We opted for the feature which would allow Heidi to raise herself up ~ 12". She really enjoyed getting eye level with people while in her chair. The only limitation to having this is that you give up the cradle for the eventual respirator,  Our other regret was not getting real wheels (rubber with air) We got wheels with molded rubber, very unforgiving on bumps, no traction when things are wet. Working with Superior was for the most part a  great experience. Very knowledgeable, provided feedback quickly on what had to be adapted next on the chair and always worked with our insurance for approvals..okay.

Thats it for now, Ashton complained that my entries are too long...I will talk about things we did to our home next...thank you for reading.

Steve

The BIG Event

December 15, 2012 our daughter Ashton graduated from CSU Sacramentoo. An undergraduate degree in Child Development. For now she is going to take a year off, Skiing for Sacramento State and being the Team Coordinator. She will still be a server at Bar West but is also looking for a job as a nanny. After a much needed break she will jump right back in for her Masters and Credential. (Heidi began this post)

Ashton waving to mama with pride

To best describe the planning process for a 20 hour road trip with a non-verbal quadriplegic on a battery operated breathing system is nothing less than remarkable. I often described Heidi's ability to plan to that of a duck on calm water, on top she was always composed and matter of fact, below the water was another story, churning at a frantic pace.

When Heidi told me that we were going to Sacramento, I said are you sure you want to subject yourself to this, it will be really hard on your body and me both. Her response was, a few ache's and pains pale to the opportunity to see her baby girl graduate and that we needed to figure how to to do this, not talk about why we cannot. That was Heidi, direct, forceful and full of confidence that we could do this together.

As I worried about the cost of our making this trip, Heidi had been working behind the scenes on grants. We were looking at 6 mos of caregiving money in our account (about 60K) and I was worried that this 72 hour trip would consume our dwindling care-giving funds. Never doing anything without a plan, Heidi had landed a $2000 grant which was a provided a sigh of relief.

Now that the finances were addressed,  we had to find a hotel that could accommodate her wheel chair and that would work with us to have our room set-up with a medical bed, oxygen, suction machine (this was key) a hoyer. Heidi found a company up in Sacramento called Marion Medical Supply 916-451-4461, they were wonderful to work with, they reserved everything we needed, did not ask for a deposit until the week of the delivery, they arrived early to the hotel room, set-up the bed, the hoyer...all we had to do when we arrived was get me a beer to mellow out and get Heidi ready for bed.

Next we had to get the van ready, I had the Ricon lift serviced, there is only one company within a stones throw that do this, they are Adaptive driving systems in San Luis Obispo, They always have a leadtime, so I had to make a reservation to get it serviced a number of weeks prior to our leaving. The drill has been, I drive it up on a weekend (sunday) they work on it Monday, I get a ride up monday evening after work to get it.

Next we had to get the van serviced, last thing we needed was to have any mechanical issues on a 20 hour road-trip...My biggest fear was due to Heidi's vent, it was battery powered, (each battery was supposed to last up to 8 hours) it was always the "up-to" explanation that scared me, The system had a cigarette lighter charger that we were able to power the vent with...So if the van had mechanical and or electrical problems, our lives would have been interesting if we had gotten stranded on I-5 somewhere. I had considered bringing our generator just in case.

We always use Olivera's repair in Buellton to service the van and it was serviced  a few days before we left.  My job was done for the time being, Heidi organized what she would need for the trip, food, cloths, towels, med's , she had made arrangements with Annie Wright (our nite care-giver) to travel with us. Annie was wonderful, she was very patient with me anytime I wigged out, which was often, but the stress was unbelievable on my end. Both she and Heidi did lot to keep me calm.

The day is here, one of the things I missed most were the trips our family took together. Heidi and I always had the "boy" jobs and the "girl jobs" Heidi always organized everything to be packed, I got the van ready and packed all of our luggage etc...My dad, Chris, Annie and I were in the van, we were able to get on the road by 11:00. 

I had been concerned about which route to take, as the road to kettleman city was always full of ruts, jumps and would have made Heidi miserable as it would have caused her to bounce around in the chair, Now keep in mind, the chair had redundant features to keep Heidi secure, we had a shoulder harness and belt system on the chair itself, this was followed by seat-belts that were part of the anchoring system for the chair. Heidi had just received a modified forehead system that had soft pads that were pressed firmly against each temple to help keep her head secure. 

It turns out that the route to kettleman was smooth as glass due to all the new construction and was very comfortable. The trip up went off without a hitch, the van ran great, the vent caused no problems. We had a great first leg of this road trip.

When we arrived to the hotel is when all hell broke loose.  Annie was getting out of the van, she fell very hard onto the pavement, after a few tense moments I helped her up and she was able to walk it off...Tough woman. Heidi was still strapped into the van as my dad, chris and Annie unloaded the luggage to bring into the room. It was not until I parked that van that we had our first heart-pounding moment. I started unstrapping her chair, a series of alarms went off on the vent...this was the solid loud alert telling me that Heidi was not getting air.

I am thinking oh my god, this is it. I was able to get Heidi out of the van (I playfully told her to hold her breath) which she smiled and blinked once...one blink meant yes...She remained calm as I started scrambling around trying to figure out the problem..Annie had to get the ambu bag (which is a pliable bag) that is hooked onto the trach opening. Annie breathed for Heidi as I got the vent working. We were able to hook Heidi back onto the vent and we made it into our room. We had already hooked up the second vent in the room to prepare for the transfer, as we started to lift Heidi out of the chair her alarms started sounding again, but by then we had her close enough to the bed, so no real stress at this point..we got her into bed, she got potty done, was fed, we gave her a treatment and all was good. She smiled as we got her computer hooked up so she could talk. All she said was great job and how excited she was to be in Sacramento. If you could have seen her face, she was radiant. This really made the trip up worth while..seeing how satisfied she was..you could see in her face she was saying na-na-na-nana that she knew we could do this....I smiled and kissed her.

Celebrity welcome

The next day, we start preparing for Ashton's graduation. The day itself was horrible, cold and raining..just one more thing for me to worry about...keeping Heidi warm and dry...Heidi slept until 11:00 that day, Ashton was having a graduation party/graduation party at her house...Heidi was so excited to see Ashton's home and meet her friends. We arrived at Ashtons and found that there were stairs that had to be negotiated to get into her home. Keep in mind, the chair weights at least 400 lbs..we had bought a ramp system a number of years ago, which really came in handy. As we set-this up, the rain made it slick, so I had a lot of fun getting her up the ramp as the chair slid and skidded trying to gain traction....Heidi was undeterred, smiling broadly as everyone crowded around her, she received a celebrity greeting by the 30 or so friends and family. 

Negotiating the stairs

The graduation was held at the cow palace in Sac. Very large area, confusing, rainy and cold. They were not really set-up for the handicapped, the security was extremely tight, we had to wait in line in the rain as we made our way up the ramp. Upon arrival to the screening area, we had to unload all of Heidi's bags for inspection..fun stuff...We arrived inside and got a floor seating arrangement, this part was set for the handicapped and was great.  

Love and Pride seeing our baby graduate

Heidi was able to watch Ashton walk into the graduation ceremony...again a smile so big I thought her face would burst. Ashtons Aunt Chris (Heidi's sister) had flown out from New Jersey , Heidi's cousin Carol made it, my dad and Chris. Ash got her diploma, her look of triumph (I did it and my mommy is here to see me) was glorious and again made the entire trip worth while. 

With Mama in her Sacramento home

Keep in mind, the vent was running on batteries, in the back of my mind I had worried about how long the batteries would really last, being paranoid, I brought the extra set-of batteries with me into the ceremony.

As we got the the van, the batteries started alarming, which meant we had x-amount of time left before we shut down. So scrambling, we got Heidi into the van and got her hooked into the car charger. No problem right? Well as we are leaving, the vent alarms were sounding again...As I pulled the van over, everyone as shouting advice as to what I should do, my dad and Ashton, I yelled to keep quiet so I could figure out what was going on...I never really did figure it out, I moved hoses around detached and reattached and it started working again...This would happen a few more times as we were heading back to our hotel. When we arrived, the vent went into complete shut-down, alarms and confusion. I looked at Heidi and it was a face of calm, she blinked at me once as if to say I trust you will figure this out. Annie had to get the Ambu bag again as we wheeled Heidi into our room. We got her hooked into the spare vent and all was good. I got myself a few beers after this one and proceeded to sit next to Heidi, we watched TV as I tried to figure out what had happened...I detached and reset everything and hoped for the best

The trip home as a reverse of the trip up...no problems...the vent worked without any issues, van ran great..Heidi smiled the entire way home

Aunt Chris and Cousin Carol

Setting Heidi's arms for comfort

Says it all, my dad emotional that Heidi was able to attend

The first 8 hours

Hello everyone, Heidi's family has been trying to cope with her loss. The void we feel can at times be overwhelming. They say that the apple does not fall too far from the tree, my kids are such a strong reflection of Heidi as they seem to both have the ability to pick me up with strength and love when I am engulfed with grief and confusion as I try and figure out how to move forward without my bride. We three all seem to be able to sense when the other is in need of a hug and or  someone who just listens.

To help with the healing process, I am going to continue on with Heidi's blog, primarily talking about our lives  and how we as a family are learning to live on with Heidi's memories pushing us forward. I will try and explain how we (Heidi and I) attempted to prepare for this day.

We lost Heidi almost 4 months ago,  never in our wildest dreams could we have imagined what was going to happen less than 24 hours after Heidi left us. Here is that story.

March 25th, I receive a phone call from Christopher, his 3 word statement will forever be with me. Crying, Chris said "Dad, Mama's dead", I could not believe what I had heard and asked him to repeat, he said in a louder tone "Dad, Mama's dead" What filled my mind next was a flood of emotions which caused me to collapse to the floor of our office in tears crying no, no, no. My pain was felt by everyone who was in ear-shot of our office. I ran out the office door not realizing where I was going, ending up at my truck without keys. As I ran back into the office, my boss caught me in a bear-hug telling me he could not let me leave, as he feared for my safety and those around me if I got into my truck and left. We sat out in front of our office for what seemed an eternity, I cried and Santos just held me

When we got back into the office, he told me that the owner of our company needed to see me, when I entered his office, he hugged me and cried as he prayed for Heidi's soul and my families well being. We talked about our previous 8 years,  I talked often with Pete as Heidi and I coped with ALS and its progression. I am blessed to work in a company that see's its workforce as a family.

My son called my around 2:30 in the afternoon, I arrived home around 4:00 to find Heidi's closest friends all huddled in our living room, they had all had a chance to go in say say good-bye to Heidi. When I got to our bedroom door, a police officer stopped me from entering, I looked around him and saw Heidi, it looked like she was  asleep, nothing out of the ordinary.

I tried to get around the young officer who stopped me again apologizing that he could not let me pass as the room was a crime scene. What he said did not really register (will touch on this later when I am able) all I heard was that I could not go in and hug my wife's body. I was not polite, I told him that if he did not let me in my room to hug my wife before she was cold to the touch there would be some real problems. He got on his walky talky and got approval for me to enter my own bedroom. As I got closer to Heidi, her smile which always radiated the room was not there,  I broke down crying asking her why, I hugged her, kissed her and huddled down with my head on her chest sobbing.

It was soon after this that the mortuary arrived and took Heidi's body.

I don't really remember when I called Ashton, but when I called, her reaction was like Chris's and mine, hysterically crying and asking what/how in disbelief. Ash was at Lake Havasu at the start of a week long spring break, her friends all took her in and held her. They offered to help pay for a flight home, but unfortunately no flights were available, so she rented a car the next day and drove home  .I am glad she was not at home for what happened next. I had also called my dad, who dropped everything to come up to do what he could to help. He arrived and stayed the night with us.

It is July 10 and I realize that although we had 8 years to plan and prepare, there is no plan in the world that really can prepare you for the feeling of desperation and loss you will experience. I can remember just as it was yesterday, Heidi calling me in tears as she was driving back from UCLA, Steve I have ALS, I am going to die what are we going to do? We both said after composing ourselves that we will beat this, Heidi said she will make a difference and together we embarked on this adventure with bravery, laughter and love. We often talked about the choices we made as husband and wife, choices in employment for one. When I lost my job, Heidi prayed (she prayed enough to make up for me) we had decided to stay in the Santa Ynez Valley, I would take a job making 50% less.

This was one of the best decisions we ever made and came back 10 fold in the support and love our family received from the Santa Ynez Valley.

Ashton and I talk about Heidi and what we remember..it is not the woman who could not move, talk or breath on her own. What we remember is the mother who had endless energy, the one always volunteering for school functions, coaching soccer, hugging and laughing. My memories are locked on our wedding day, 26. 5 years ago, I could see her blue eyes and radiant smile coming at me, I remember our vows, I can hear her voice.

The following are pictures of what we remember today