Now that we sat for a spell, caught our breath and digested the mountain of information that is ALS. Let’s reflect on something that should be hitting right about now…Grief.

ALS, grieving and mourning our future.

Grieving when you experience a loss is a natural process of life. Especially when you lose a loved one. But what do you do when you lose the life you had planned on, the life you dreamt of spending with your loved ones? Your still very much alive it’s just that you have to alter all of your future plans.

What do you do in this situation…? You mourn, you experience anger, denial, bargaining and everything else that comes along with it. Having experienced this personally with a diagnosis of ALS I can imagine that many if not all patients go through the same process. The moment Meg and I left the clinic after receiving the news our minds were abuzz with a whirlwind of questions. Meg being a planner, I’m sure was already wondering what plans we have to put in place to deal with this. These thoughts we’re only superseded by the thought of having to break the news to our children and family.

After the news settled in we went about our lives starting to plan and think of changes we would have to consider. At the same time that I was diagnosed we were invited to attend a support group and the annual walk to defeat ALS. Our emotions were to raw to consider attending either. Eventually we worked up the courage to attend the support group. It turned out to be one of the best decisions since being diagnosed.

Meg and I reflected on the advice we received from other families and decided to talk and discuss the importance of a unified approach. So what has changed for us? For starters I had to retire permanently in order to arrange future benefits for Meg and our children. Meg has to consider early retirement to care for me. Barring any incredible discoveries in the treatment of ALS in the immediate future I also realized I may not see my children grow up into adults.

We are in the process of making memories such as destination vacations. So far we have been on two cruises and 9 years ago before my diagnosis we had an Incredible 2 weeks RV trip up to Mount Rushmore, Yellowstone, Colorado and New Mexico, it was amazing. I even went skydiving six months after diagnosis. Yes our life has changed inextricably and forever. But has it ended? Hell no!!

Let’s take a moment to focus on just the caregiver, shall we.

ALS is a very labor-intensive medical condition, what do I mean by this? Well simply put, it requires a lot of time and attention to the patient. This is wholly dependent on the severity of the pALS condition and how advanced it is. The more advanced the more minute by minute care that is needed. Of course the whole point of this is to sustain a decent quality of life for the patient.

Because of the intensity of the Care needed by the patient it is very common for the caregivers to become overwhelmed. Although grieving begins at diagnosis the focus on care by the caregiver can interrupt the natural course of this process. Coupled with the desire to not leave their loved one for any amount of time it can become untenable for this to continue unchecked. Most of the time it’s because there is no one else to take their place.

Grieving in this instance becomes incremental; mourning the loss of function, speech, touch, independence and even friendships. Mourning the life you had planned for your self or each other.

Im tired, let’s take a break.

More to come…

The Juan and Only