Perspective

Yes my confusion is still here but it seems less important. Having a major health crisis in the family does put less important things in perspective. My mother-in-law's health took a decline this week. Is it life threatening? Yes it could be. Hopefully the medical intervention has stopped further decline. Since her EOL (end of life) decisions have been made acceptable treatment is limited. The one thing that could give her more time is a ventilator, she doesn't want that. She doesn't want to be kept alive by artificial means nor does she want brought back if she dies. She made these decisions a long time ago and confirmed her EOL decisions this time. She will be 71 on Halloween

She has approximately 15% lung function and her lungs are no longer able to do their job. She is getting CO2 build up in her blood. She did agree to a bipap (non invasive ventilation) which she wears continuously at night and every 2 hours during the day. When she's not on the bipap she's on 5 litres of oxygen. She also has carbon monoxide building up in her lungs.  The carbon monoxide and CO2 can have devastating consequences.

We honestly don't know from hour to hour what's going on. We just support her and our family any way we can. Last night I quietly sat by her bed listening to her sleep, stroking her hand. My sister-in-law hasn't left her side for almost a week so we brought her a hot meal and a few things she might need . We gave her a small break so she could rest. Family is family. During times like this petty problems seem not important and families come together. My husband and his sister don't always get along but the compassion shown is unmistakable. My sister-in-law is in the process of being diagnosed with MS and stress can be detrimental but she sleeps in a chair at the end of her mom's bed.

My own confusion seems less important and made me realize what is. Family.

ALS, disabled and other bloggers

When I started following certain blogs I knew for a certainty that the blog would eventually end. What I didn't know is how. Would the blogger become too debilitated to continue writing or die? Would the family do the final entry or would the blog become idle? I just didn't know. Reading the entry made by her daughters a few days ago I knew for a fact she had died, I seen her obituary. ALS had stripped away many of her abilities but not all. When I first found her blog and started reading it was because of the mention of DIGNITAS. She decided not to go that route because she would be forced to go too soon. She was losing small abilities here or there but the progression was slow at first. She learned to cope with each new loss with humor and grace. And then the motor neuron disease would accelerate before coming to a plateau. She adjusted with each loss learning new ways to continue living independently. Therapist and carers taught her ways to cope with each loss by learning new ways to do things.

It kind of reminds me of how I had to learn to do things differently after my back injury to prevent further injury. Now when I do things I'm no longer reminded of how far I've come or how I used to do things. I just do it. With therapy I knew my life would improve and I could be more active. But providing therapy for someone with Amyotrophic Lateral Sclerosis made no sense until I started reading blogs especially hers. One of goals of therapy for someone with ALS/MND is dignity and longer independent living. Each new thing taught allows the person to do activities of daily living (ADL) longer. Because of the uncertain nature of ALS the therapies is less aggressive and the goals aren't long term. Or the therapist evaluates the person for Orthotics such a braces or splints, or whatever they need at that time.. Sometimes therapist recommended adjustments to the home to allow longer independent living. PT, OT and ST along with the other members of the health care team are important for anyone facing ALS or any debilitating condition. With ALS the debilitation can be slow or very fast, so the person might be evaluated more often.

Her life didn't end with her diagnosis. She volunteered, painted and drove a car until several months ago. She prepared her own meals until a few months ago. She traveled. She created new memories with her children and grandchildren. The most important she did was give people hope that a shitty diagnosis didn't prematurely end her life. She continued to live, learn and get pleasure from the small things most of us take for granted. She is already missed by me and many others who followed her life with ALS/MND.

Sad News

One of the ALS/MND bloggers I follow recently lost her fight with Motor Neuron Disease, 21 months after diagnosis. I started following her blog early in the diagnosis and witnessed the devastation through the written word. Even after she was given a death sentence she had adventures and continued to live. Life doesn't completely stop with a shitty diagnosis. She continued to paint, took trips and accepted each new challenge as this disease took away abilities. She lived!

She left behind a legacy of strength and hope.

Pulmonary Fibrosis

Have you read another blog and that you totally understand where the blogger is coming from? Last night I read a blog and it hit me in my comfort zone. The blog was talking about one of their immediate family members recent diagnosis and how everyone is pulling together. It almost seems like it was yesterday that my stepmother passed away from the same disease her family member is facing. Pulmonary Fibrosis. The prognosis isn't good if you know someone who's living with it. Our family learned to accept the uninvited disease and face the unknown.

Pulmonary Fibrosis can be considered a terminal illness and is always fatal with a life expectancy of 5 years. We had less than 6 months.

Pulmonary fibrosis is the formation or development of excess fibrous connective tissue (fibrosis) in the lungs. It is also described as "scarring of the lung".  (Source Wikipedia)

Symptoms

Symptoms of pulmonary fibrosis are mainly:

Shortness of breath, particularly with exertion

Chronic dry, hacking coughing

Fatigue and weakness

Chest discomfort

Loss of appetite and rapid weight loss

Pulmonary fibrosis is suggested by a history of progressive shortness of breath (dyspnea) with exertion.  Sometimes fine inspiratory crackles can be heard at the lung bases on auscultation.  A chest x-ray may or may not be abnormal, but high Resolution CT will frequently demonstrate abnormalities.  (Source Wikipedia)

In 2009 or 2010 everyone began to notice my step mom was losing weight rapidly and starting to experience shortness of breath. Her activity level quickly diminished. She stopped going to town. This was a woman who went to town multiple times a day or drive 70 miles (round trip) for a deep fried pickle. Or 100 miles for beef jerky. Her sudden exhaustion didn't raise too much concern because she was 80, general tiredness should be expected with aging.

As the shortness of breath persisted and continued to get worse testing began in 7/11. In August she was diagnosed with Pulmonary Fibrosis. The prognosis was bad. My dad, niece and stepsister began providing 24 hour care at home.  On 12/14/11 my stepmother was admitted to the hospital to have higher amounts of oxygen administered. She was quickly put on 15 liters. On 12/20 the Dr felt she should be put on a ventilator, she refused. The hospital wanted her to go to a hospice, she refused. She just wanted to go home. The hospital she was in was 50 miles from home.

On 12/21 my family arranged for a squad to bring her home.  Our family realized she might not survive the trip but it's what she wanted. A couple hours before the transport some of the family came in to be there when the extra oxygen tanks were delivered, three tanks were connected. My step sister got her new furniture (she never sat on) and another decorated a tree. The hospice nurse arrived .

During the transport her oxygen had to be decreased. Again we were aware she might not survive the trip. Once the squad arrived and she was being unloaded her eyes brightened up. You could see a radiant smile behind the oxygen mask as she greeted the family with a wave. She was home.

It took an hour or so to get her situated and for quick training for those providing direct care. My family was shown how to give her morphine during the times hospice wasn't there. We thought we would have a few days so I was supposed to go the next morning to be with her.

The hospice nurse gave her morphine and she started burning up. The doors and Windows were opened. My family put on a CD of Dolly Parton singing "precious memories". Her conditioned worsened but she was alert enough to comfort my step niece. She told her not to cry I'm with Jesus now.

She passed away as Dolly was singing "Precious Father, Loving Mother". I'm bawling as I write this.

Perhaps the ambulance ride took away hours or days from the time she had left but it's what she wanted. Maybe the hospice might have gave her a few days but she just wanted to go home. Why deny her that? She felt she took care of her 9 children including me and some of her grandchildren , we should take care of her. My family took good care of her. Did she suffer? Her golden heart stopped beating before she started completely suffocating. In the end it would of felt like trying to breathe with a boulder on her chest. She made a choice to refuse further medical intervention just to go home.

It breaks my heart knowing a family I only know through blogging will take this same journey my family traveled not long ago. I'm praying for them