Thanks for asking

"Things happen for a reason."

"I know what you are going through."

"How are you doing?" Accompanied with a sigh of sorrow and a look of extreme pity.

"You poor thing." 

People who have not been 'in my situation' don't really 'know how it feels until they themselves go through the experience'.

There are many folks who have gone through this experience. I'm going through stages of grieving for my husband while he is still alive. The grieving started years ago. In a blink of an eye, I went from being a partner in a relationship and being free to do my own thing, to a Caregiver who had to pick up all the responsibilities we used to share. 

For 10 years now, I've watched my husband diminish one small bit at a time. In 2015 I started this blog to track our journey through Stage IV throat cancer. His prognosis was pretty dim at that time. The cancer treatment process did quite a bit of damage physically and mentally. He already had mental health issues previously. But the chemo fog and the weeks of radiation [along with a TIA & anaphylactic reaction to chemo] lessened his quality of life.

The doctors were amazed at his recovery though and told him so. The stroke that followed a year later should have done him in. Twice the neurosurgeon had to go into his brain to remove blood clots. The neurosurgeon told me afterwards that he wasn't sure how much damage had been done.

Four days later, he was home. I quit work to care for him and take him to therapy 3 times a week to learn to speak again and work on his thought process that had been messed up. Again, everyone was amazed that he came through this event so well. 

Granted, he could still walk, talk [sometimes backwards -- aphasia] and help a bit with chores. But his interest in most everything stopped. He couldn't comprehend reading or browsing the internet to read about hunting, hound dogs, and other fun things he used to do. TV programs have to be simple stories, nothing complicated. 

His anger issues from his PTSD were diminished greatly. The VA appointed me as his Fiduciary [think POA of finances]. We had an inspection from the Fiduciary folks at the house and we went through our statements and finances. 

I sold our cattle and our breeding mares along with a few mules that were to be 'in training'. Rich was still able to mow the yard and run the skid steer. He even was able to work his chainsaw a bit in order to help clean up messes.

In another 14 months he woke up one morning complaining of his chest hurting along with extreme and sudden pain just before Christmas.

Once more I followed him from one hospital to another. He was once again put in ICU and the attending doctor was once more very grim. He'd had a Pulmonary Emboli. Blood clots in both lungs preventing him from breathing. The doctors at this hospital said his chances of surviving were minimal. However, he did survive. He was in so much pain afterwards. His capacity for breathing while doing anything had been taken away.

At a follow up visit to his Primary Care Physician, he complained about his shortness of breath and the pain. The VA doctor looked at him and told him not to complain, there were others worse off than him.

OH yes, she did!

I immediately requested a transfer to Palliative Care. And there we found the best care ever for someone who has had so many medical 'events'. He could leave Palliative Care at any time. They were concerned for the whole person. Not just the current medical event. His pain was addressed, his mental health was addressed, his comfort was addressed as was mine. He had a Social worker and I received a Social Worker who addressed my needs. She became the go to gal when I needed help, an answer, supplies, assistance in any way.

For the next 7 years our lives were pretty quiet. Rich could still mow with an oxygen tank on the rider. We worked with his severe depression. We--the VA and I. His COPD exacerbations took a bit more from him each time.

He could get around the house safely, he could make his own snacks and cereal. 

Then he had his next event in February. Acute hypoxic respiratory failure. Those terms mean simply: He stopped breathing. Period. 

Rich is still upset that they revived him in the ER. He turned down going on a ventilator and they took him off the BiPap. 

Fast forward now to our 5th month in Hospice. It was the best choice we could have made. There is no way I can get Rich to the multitude of appointments that he would have had to do under regular care. I cannot get him in and out of the car and to the house on my own.

His care team comes here. They keep him at a comfort level and each Hospice worker visits with him too. It isn't like an office visit that feel cold and hurried. 

They don't look at us with pity in their eyes. They have been down this road many times with many patients. But no one talks about it. Why? The thing no one wants to acknowledge is that death is a natural part of living and why not make it easier for those loved ones at the end of their lives.

So here is the funny part. 

Please be amused. I went on Tuesday to meet my friend Pat at the CrossFit gym so I could follow her out to her house.

No one at the gym other than Pat has seen hide nor hair of me since June. At the end of class so many came up to me while I was waiting for Pat to change her shoes.

Those questions bombarded me. The looks of sorry and pity, the questions. I was surrounded by well meaning and fun folks.

So how are you doing? [They dragged out the 'are' with sincerity, anguish, concern, and pity.]

I was awful.

I simply answered, "I'm terrible, thanks for asking."  [credit to Nora McInerny]

Pat covered her mouth from her giggle and looked away as the person in front of me stood shocked and speechless.

But I was being honest.  I was not going to answer, "I'm fine, thank you."

Terrible may have been too shocking. Maybe I should have just shrugged. But I didn't get the pity party of looks anymore.

I did have a lady ask if she could talk to me outside of the gym as her life was turning down my same road with her husband. I'm a good listener and sometimes that is all we need.

Now that I could deal with and I gave her my info. I can help others. When this story reaches its end I will do exactly that. I am looking into volunteering for Hospice.

And that is my answer to "How are you doing."

Sometimes I am terrible. Some days I am fine. Some days I just want the world to go away and not be a responsible adult.