Time and Energy - Figuring Out What is Important

Us

One of the things that you learn early in an ALS diagnosis is that there is limited time and energy during the day. For an ALS patient, simple tasks and movements take much longer and require more energy. I've often heard patients and caregivers say we limit outside activities to at most once a day because that's all we can manage. This is also true for us. The work to make things happen is so much greater at this point in our lives. Because of this, time and energy have taken on new meaning and we must discriminate on where we chose to spend it.

As a caregiver, I find I also have limited time and energy. This is a totally new phenomenon for me and it causes me stress. For those of you that know me, you know that I like being busy. My stress comes from not doing all the things I want to. Before ALS I always felt I had no limits on how much I could accomplish, so now I'm learning to work with limitations. I have to look at things and ask, is this important or can I let it go. Very few things are absolutes, except my most sacred time spent on my morning walk. I'm very protective of my time in the morning... it keeps me sane.

Jake, on our morning walk in his nice red jacket,
a gift from Patrick...
Picture taken before Jake decided he didn't like it.

In addition, to managing my own priorities, I'm challenged with Patrick's priorities. At this point, there is not a lot he can do without my assistance, so if he wants to do a project of any kind, my involvement is generally necessary. This creates stress between him and I, because frankly sometimes what he sees as a priority isn't even on my radar.

This year, in March, I turn the big 5..0... Patrick has been planning my birthday party pretty much since I turned 49 last year. I told him to let me enjoy my final year before I'm half a century old. I actually didn't want a birthday party, it just seemed like too much time and stress. My hope was that he'd let it go. But over the past six months, I've realized that he would not let this go and although Corrinne was conspiring with him, he still needed my help to make this happen. It finally became apparent to me that I needed to be ok with this, because it was important to him and frankly it came out of love. 

So, I'm helping with my 50th birthday party, although I can't take too much credit. A group of friends and family helped to secure a location, find a DJ, cater, create invitations, RSVP web pages and the list goes on. I have to thank my Old Goat friends, Corrinne, Pat & Dave and my favorite sister, Denise in helping Patrick to make things happen. However, reluctant I was to do this, I am incredibly touched by all the activities going on. With Timmons' motto, "anything worth doing, is worth overdoing," it will be a super fun Star Wars evening, with Ewoks, Stormtroopers, and Jedi...

At this point in Patrick's life, it's interesting to see what things he will extend his energy on. Patrick and I have been involved with our local ALS Association since the beginning, we attend support groups, he served on the board and we do various side projects as they arise. One issue that Patrick and I both noticed when attending support group meetings was that caregivers and patients who were referred to hospice had a wide range of experiences - some good and some not so good. We both agreed that hospice, when done well, was such a benefit to the ALS patient and their families. It was odd that experiences were so varied based on the agency or even specific representatives.

If you are not knowledgeable about hospice or palliative care. Hospice is provided to a patient that meets the criteria of being terminally ill and with less than six months to live. Hospice care is a team approach that provides the patient with professionals both medically, psychologically and spiritually to manage a patients end stage of life. 

Over a year ago Patrick began thinking about what could be done to bring a more consistent level of care to ALS patients in hospice. He starting doing research and discovered that the California Hospice and Palliative Care Association was working with the AIDS community to address end of life care for AIDS patients. Which led to his thinking, why couldn't there be a collaboration with the hospice association and our ALS association to address the needs of ALS patients. With this in mind he began corresponding with Nancy Wakefield, Director of Patient Services and members of the Care Services Committee to encourage a collaboration. This has been on his agenda for about two years and he is relentless in his efforts to make this happen. 

I'm thrilled to report that this collaboration is now a reality. A task force between ALS Association Greater Sacramento Chapter and the California Hospice and Palliative Care Association is now working on creating best practices for ALS patients in hospice care. The Hospice ALS Care Protocols Work Group is comprised of people who work directly with ALS patients as clinic doctors and nurses, social workers, hospice care specialists, association staff and caregivers. It is an impressive group of individuals in the ALS community. 

Patrick recommended me to fill a role on the committee and frankly I really didn't know what to expect. I found the first meeting to be very inspiring - the group is engaged, excited and positive about the potential outcomes. Apparently there are other state hospice groups and ALS chapters interested in the final report and recommendations. I couldn't be more proud to be part of this group and to know that it came about because Patrick Timmons wanted to make a difference in the lives of his fellow ALS patients and their families. As Margaret Mead once said, 

     “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

For all my fellow caregivers and patients, we are working on creating a survey to get your feedback on your experiences with hospice - likely it will be posted over the next month. Please complete the survey with your thoughts and feedback. It will be included in one of the upcoming association newsletters and if you send me your email I'll make sure you get an email directly.

I'm inspired by Patrick, his ability to see beyond himself and look to make a difference for all ALS patients. Someone wrote me a note a while back asking to be remembered to him because he was always a great guy to work with. My response... he's still a great guy and he's still making a difference even with limited time and energy. 

I'll keep you posted on the outcomes from the work group - I'm hopeful and empowered. 

All the best to you and yours!