Coming back from pneumonia has been incredibly difficult. ALS has weakened not just what you can see in the Big He but what you can’t. His breathing has been impacted from what seems like the beginning of this journey. His diaphragm, a muscle, has been weak since before we started our second year into this disease. It started with not being able to breathe lying down so we raised our adjustable bed. Then raising the bed didn’t help so he was given a non-invasive ventilator to wear when he slept. Slowly over the last year, he has required the ventilator more and more. When he slept, took naps or just had a hard time catching his breath. We use to focus on how many hours he was on the machine, but now we look at how much time he can come off the machine. While in the hospital, he was on his ventilator for the most part 24/7. He tried to come off, and did for 10 or 15 minutes but something new would happen and back on 24/7 he would go.
Now that we are home, the Big He is still on his ventilator. He has been having these horrible coughing fits. What is really happening is issues with moving mucus from the lungs up. In other words, he can’t cough anymore. The residual effects of the pneumonia along with the natural mucus produced is causing him hell. To the point he needs some serious medication to get through these coughing fits. It is this lack of mucus management that will bring us to the next phase of ALS. That is, the need for a trach. This is an incredibly personal decision. One that is not made lightly. One that many with ALS choose not to have. The Big He, as of now, has chosen this as his next step. He is not done living this life. He has more memories to make with the Little He. When will this happen. Some time in the near future. This will hopefully give us more years together as a family as well as give him a better quality of life, cause the coughing is tiring him out. This decision will require us to hone our caregiving skills. We will need to open our home to more people as it will take a village. Family and friends help as they can, but the Big He and I know that moving forward we may need to hire care so that we can ensure we are covered. It’s not just for him, it is for me as well. I have been going day in and day out and only this weekend was able to have a full 8 hour break. I slept through the night since the Big he went into the hospital. The Big He’s other caregiver came in and spent the night, giving me a much needed full nights sleep.
Along with the greater level of care that the Big He currently needs, I am or should I say, I was trying to get a hospital bed for him. It is common practice for the VA to supply durable medical equipment (DME) to veterans in need and we knew that a hospital bed would be provided, but what we didn’t realize was that there are different types of beds for different types of needs. Getting a hospital bed, especially for diseases like ALS requires a specialty bed. While in the ICU, the Big He had a special bed for pulmonary patients. There were only a few in the ICU and the Big He qualified for one. As I learned more about the bed, I learned that it had special features not found on other beds. This was and amazing bed, so when the Big He was ready to be discharged I just assumed the VA understood the concept of the right bed for the disease, but they did not. I learned that a more one size fits all approach is what our local VA leans towards. Requesting the appropriate bed for the Big He was met initially with resistance. It actually took multiple emails from me, a congressional inquiry from a Congressman and a Senator, an email to the Secretary of the VA in Washington DC, a call between the sales rep for the bed the VA wanted to give me, a call between the sales rep and the bed I wanted for the Big He and finally me reaching out via social media to other veterans with ALS regarding the types of bed’s being provided by their local VA to finally get the right bed for the Big He. That’s a lot huh? All this while taking care of the Big He and his immediate medical needs, ensuring the right clinicians where coming to the house and being a mom to the Little He. Ensuring my husband had the right bed should have been a no brainer for our VA, for those that work with ALS Veterans. It scares and angers me that other veterans with this horrific disease or being provided DME that is not suited for this disease. They are provided DME based on someone that has zero idea what ALS is and what the needs of the patient are. That DME is provided based on a cost savings approach instead of a quality of life standard.
While I am beyond thrilled that the Big He in a few short days will be sleeping in his new, appropriate bed, that joy was short lived. This weekend, we needed to move our king bed out to make room for the new hospital bed. We actually moved the king mattress, one adjustable base and our headboard to storage. I bought a twin mattress for the other base so I can still sleep in the same room as the Big He. As I was stripping sheets and moving things around the grief hit me. In fact, my breath was taken away once. The hospital bed is the end of us sleeping together in the same bed, sleeping as a married couple. There is no coming back from this. There is no rehabilitation that will happen. We both know what moving our bed out means. I also know that when the bed comes back into our room I will have unwillingly exchanged my title of wife for that of widow. The memories of the love we had for one another will only be known to me when the bed returns.
With ALS, there is constant grieving. Grieving for things you never thought would be an issue. I did not once think that I would be hit with a wave of grief getting ready for the bed I fought hard to get for the Big He. I didn’t think I would grieve the loss of not being able to touch him as I slept or roll over for a good morning kiss. The snuggles just before we drifted off to sleep or the conversations of our day or our future as we got ready for bed. The little things you don’t think of until they are gone.
Yep, coming back from pneumonia has been hard on all of us.
Tonight, if you share your bed with a loved one, savor the goodnight kiss, enjoy the cold or warm feet, commit to memory the feel of having someone next to you.
All my love,