Cinco de Mayo and Icky Camping and the Week that got Ickier

Well, Stan’s birthday party wasn’t enough partying for me, so my friend Alice and I hosted one of our girlfriend lunches on Cinco de Mayo at Murrietas Mexican Restaurant. It was a fun gathering, as usual.

I sat at the head of this long table so there were lots of gals I didn’t get to talk with.  Maybe next time!

    We had about 20 gals, our biggest group so far. Each person got a necklace with a pepper on it and a clip-on flower for their hair, and also a list of trickster Spanish words. They had to guess the meaning of each one and then we passed the answer key around so everyone could see how they did. It was fun. Everyone filled out a little piece of paper with their name, email address and their text number. Then we had a drawing for our door prize, which was a succulent planter this time. Catherine won.

    Catherine, the big winner, Alice, and me
    I had a nice visit with Judy, who brought my mantra along on her trek of the Camino de Santiago. We are showing our matching mala bracelets.
    Judy also brought along her mom visiting from Chico, California

    Continuing around the table

    I was the co-host and I was leaving to go camping in a few hours. Being so busy getting ready for camping, I came to the lunch without my food, phone, or camera. Luckily others did have phones. Thanks to Judy and Alice and Catherine for the photos.

    We had great service at Murrietas, but it being Cinco de Mayo, they were very busy. When I looked at the time it was 1:30. Half of our group hadn’t been served yet, but I realized I better get going since I had to eat at home and finish getting ready to leave when Andy got home from school. So we quickly did the door prize drawing and I said my goodbyes around the table.

    I went home and ate as quickly as I could (gravity feed can’t be sped up much) then I finished packing. Stan had left earlier in the day in the motor home to secure a camping spot and meet our friends Ernie and Kori. Andy packed quickly when he got home from school and we hit the road, towing two dirt bikes in the trailer. Andy did an excellent job doing all the driving, which left me to experiment with my camera.

    Storm clouds over Fairview Peak on the way to camping

    We pulled into the campsite at Berlin-Ichthyosaur State Park (Icky State Park for short) at about 6:30. Our friends Catherine and Brian were about a half hour after us.

    We had a nice campsite

    Friday night there was a nice sunset.

    Stan and I both sleep with bipaps. Our motor home has an inverter so we can run our bipaps off the battery. In the middle of the night I woke up because my bipap was turning on and off. I woke Stan and he asked if I would go turn off the inverter. So I had to find my reading glasses and I used my cell phone for light. Then I went back to bed and the hot water heater came on, so I got up to turn that off. I did get back to sleep but it wasn’t the best night’s rest.

    On Saturday, I hiked one third of a mile to the fossil tour, while the rest of the group went on a dirt bike ride (4 of them), with Catherine and Brian in their side by side Polaris.

    The giant mural of the Ichthyosaur dinosaur. They actually have found remains of some a lot bigger than this in other parts of the world.
    It was a great tour of the archeological dig which is now in a shelter. The ranger was quite knowledgeable about Ichthyosaurs and he was a great storyteller and a wealth of information.

    The sign to make sure everyone knows how to pronounce the Icky’s full name

    After the tour I hiked back to the motor home, taking some photos along the way.

     

    I am an introvert and I value time alone for energy renewal. However, it was a little long to be alone. I was wishing I was able to ride a dirt bike, or that we had a Polaris so that I could go on group adventures too. The others got back from their tour and ate lunch. Then Stan went to work on the batteries, which had dried out over the winter. In the meantime, I came up with a family activity. When I got my new camera I gave my old one to Andy. I thought it would be fun to go down to the ruins of Berlin and take some photos and have Stan critique them (he has a lot of photography experience). So once the batteries were on the mend we took our cameras and headed down.

    The old mill

    Inside the old mill.

    Andy looking in the window of one the old buildings to take a picture.

    The above two are my favorites. Andy climbed all the way up to the mine entrance and he got a nice photo of three deer.  It is nice that Andy has a photographer’s eye and that he enjoys it, so that is something we can share. 

    By dinner time I was feeling sad again, yes overtired again. I was grieving my illness again, I was feeling as though I was going to be left alone while everyone else went on adventures on every camping trip.  I was eating inside and being consoled by Stan, Andy and Kori. I finally was ready to go outside when it was dark and the fire was nice and warm.

    Andy with a giant marshmallow with chocolate already inside

    Brian across the fire
    Ernie, Kori, and Catherine

    We retired when it became very rainy. A big thunderstorm came through overnight.

    Sunday morning was cold but the rain was gone. We had a reservation to take a mine tour at 10 A.M. Our friends all decided they would rather get home earlier, but Stan and Andy and I were ready to check it out,  so we did.

    Andy posing at the Diana Mine entrance
    I overcame my claustrophobia with a little help from Xanax, which I take because of ALS anxiety
    As far as we could go
    The light at the end if the tunnel. It was interesting to imagine working in those conditions.

    After the mine tour, we packed up and drove to Middlegate for a late lunch. I rode with Stan in the motor home to give Andy practice driving alone on the way home. Again he did great.

    During the week we were preparing for the ALS Association’s ALS Advocacy Conference in Washington, D.C.  We were scheduled to fly on Mother’s Day and attend the conference Sunday night and Monday, then meet with our legislators on Tuesday, then fly home Tuesday night.

    I went out and got some comfy shoes, since the trip would involve lots of walking. Stan’s feet were very sore, so we got him new shoes and sandals too. We watched a webinar to get us ready for the conference. I prepared some photos and text to help me tell my story.

    On Friday Stan’s pain had increased so he decided that he would bring his wheelchair on the trip, because we knew there would be a lot of walking in airports and in D.C.

    On Saturday morning Stan’s pain was so high that we took him to the Emergency Room. It is a good thing we did because he was in no shape to travel. He had swelling and infection and unsafe levels of some important blood markers.  They ended up admitting him, so I cancelled the trip.

    By Saturday afternoon, he was settled in his hospital room and I was able to go to Andy’s Reno Philharmonic Youth Orchestras concert. I was late, but his orchestra performed second and I got there just in time for his performance. He played well and the orchestra was fantastic.

    The day before Mothers Day with my son Andy

    As of this writing Stan is still in the hospital and we don’t have all the answers yet, but it is confirmed that he has a deep vein thrombosis (blood clot) in his leg. It was definitely the right decision to cancel flying to D.C. because flying puts more risk on blood clots. He is in good hands and I know they will get him back home as quickly as possible.

    Tough Love – Spousal Caregiving

    This week marked one year since my first symptom of slurred speech started. Seeing all the Facebook Years in Review makes me think of what mine would look like. So much has changed in a year! A lot of it has already been covered in this blog. And through it all, Stan has been my biggest support.

    Remember when Stan was helping me get my Mic-key tube replaced when the one they installed was painfully small? Here he is that day trying to get someone’s attention to open the door at our infusion supplier Option Care. My hero!

    We read an article in Neurology Now (Aug./Sept. 2016) about spousal caregivers. On the cover it lists some of the articles. It says, “The Caregiver Spouse: Save Your Marriage and Your Health.” So of course that caught Stan’s eye so he brought the magazine home . The article is called Tough Love  (a term usually used by parents of teenagers). The subtitle says, “Succeeding as a spousal caregiver means knowing when to ask for help, finding time for yourself, and making peace with your partner.” All three of these tasks can be hard.
    Health challenges for a married person can cause disruptions to the relationship with the spouse, including shifts and losses in areas such as intimacy, responsibility, and communication. Diana Denholm, PhD, a psychologist in West Palm Beach, Florida, and author of The Caregiving Wife’s Handbook (2012) is quoted as saying, “I always recommend that couples talk about the changing relationship openly and honestly and as soon after it starts changing as possible.” It’s important to review the list of household responsibilities and divvy them up based on the changed circumstances, and decide whether to hire someone to handle a task you or your spouse once handled.

    While Stan and I haven’t always had the best communication, we are trying, even with my communication challenges. I recently saw the NBC Dateline story about the movie Gleason and Steve Gleason and his wife Michel and how they are living with Steve’s ALS while parenting. Michel said the hardest time for their marriage was when he couldn’t talk anymore. For us this has come very early in the progression of my ALS. When asked about how she does it (spousal caregiving), Michel said, “It’s our life. It’s what we do.” I watched the episode of Dateline in the car with Stan driving. He patted my leg when he heard her say this, which I found to be very supportive.

    The article continued with: Spousal caregivers should resist taking on everything and shouldn’t neglect self care and should consider how the spouse with the health challenge can still contribute. We had a family meeting on this early on and I am still doing some household duties. At the meeting my son asked , “You want to do these as long as you can, right?” And I nodded – yes that was right.

    It is also important for spouses who become caregivers to avoid isolation. Dr. Denholm recommends talking about your challenges with people you trust so the anger doesn’t build up and erupt. There are  online support groups dedicated to spousal caregivers: The Well Spouse Association – Who Cares for the Caregivers (wellspouse.org)  provides a list of telephone support groups on its website. Connecting with caregivers in the same situation can offer much-needed emotional support. Talking to a therapist is also a good way  to share your difficulties and get help managing emotions.

    The next point in the article is to cultivate healthy communication, which is important in any marriage but is very crucial for couples in which one is taking care of the other. They may need to discuss delicate or difficult topics such as toileting or the changing nature of their intimacy. Ignoring problems or avoiding conversations can lead to anger and resentment. Avoid unloading your frustrations and anger on your spouse. Then pick a specific time to discuss thorny issues and know beforehand what you want to discuss. Also important: Use “I” statements and not “why” statements. As an example, instead of saying “why don’t you hold my hand anymore?” say “I feel closer to you when we hold hands”. It’s important to learn to speak your partner’s language according to Dr. Denholm. Generally men respond better when asked for their thoughts rather than their feelings. Wow, that’s one that could also help me with my teenage son.

    Intimacy can be another problem. Some spouses may want to maintain the same level of intimacy they had before while for other couples the sexual part of their marriage may be over or on hold. In any case it’s important to talk about sex and intimacy so that each partner understands the other’s needs, and to manage expectations.Touch can become a really important way to connect.

    It is normal to feel sad when watching your spouse’s health decline and your relationship change. Caregiving has its ups and downs, but if emptiness and despair take over you may be experiencing depression.

    Signs of depression include a change in eating habits or sleep patterns, feeling tired, a loss of interest in people or activities, agitation, anger, and thoughts of death or suicide, according to the Family Caregiver Alliance  (caregiver.org). These are all signals to take action by talking to your doctor or a friend or therapist.

    It is also very important that caregivers schedule their own personal time. Without breaks, a caregiver may fall apart emotionally and physically. After a break, a caregiver may be rejuvenated and be better at caregiving. It is also important to ask for help to ease the burden of caregiving. There are groups that volunteer a few hours a week to give in-home caregivers a break. So unless you already have an extensive network of helpers, seek out care. Family Caregiver Alliance lists family care resources by state including respite programs. When Andy was a special needs preemie baby we were able to use RAVE foundation here in Reno which provides 2 hours a week of respite childcare for special needs kids. That allowed me to go to the gym and work out which relieved my stress greatly.

    To help ease the burden of caregiving, figure out what resources are available from family, friends, and the community. It can be hard for self reliant people to ask for help. We have a list of friends who have offered to help. So far, we have only accepted offers from people who stepped up without us asking. I am sure that after we return from Holiday travels we will need to ask friends to bring a meal for Stan and Andy once a month or so. Menu planning and grocery shopping was my job before my diagnosis and it has been challenging for Stan to take over (understandably with his own health issues and spousal care issues). Thank you to those who have already stepped up – you know who you are and we can’t thank you enough!

    My hero also makes many many phone calls for me – to the pharmacy, to my doctors, and the list goes on and on

    Please consider a donation to the ALS Therapy Development Institute on my fundraising page. ALS Therapy Development Institute and its scientists actively discover and develop treatments for ALS. It is the world’s first and largest nonprofit biotech focused 100 percent on ALS research. Led by people with ALS and drug development experts, the Institute understands the urgent need to slow and stop this disease.

    Right now, AT-1501, the most effective treatment for ALS that the Institute has ever tested, is sitting in a lab freezer (Freezer 4 which I saw on my tour of the lab in October) because ALS TDI does not have the funds needed to advance it. $11 million is needed to push it into phase one. ALS is not an incurable disease. It is an underfunded one.

    classy.org/fundraise?fcid=719623