Tips for ALS caregivers from my outpost at a respite care facility

After receiving so many positive comments on my last column, I thought it would make sense to give you some real-time information on my respite care stay, which is how the issue of certified ALS caregivers — the topic of that column — arose.

I am one week into a four-week stay and am getting to know a new care team. They are learning about me as well. While it is challenging for both sides, it is also an excellent opportunity to make progress in promoting ALS awareness among caregivers.

Let me stress that I am not writing about this subject to impugn anyone. I have the utmost regard for those who choose to care for others. Oftentimes it is a thankless job, but it is a high calling. I am simply making a small effort to leave the ALS world a little better than I found it.

Thus, my thoughts about ALS caregiving are not competency-based, but rather based on a lack of information and follow-through. Admittedly, ALS and the issues that come with it are esoteric. That makes it doubly important to share information with all segments of the population.

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We all have different needs

So what can we do to make it better for everyone involved? I may be naive, but I think the solution is relatively easy to implement. Before a caregiver touches anyone who has ALS, they should know about the patient’s frailties and peculiarities, because one size does not fit all. Depending on the particular stage of ALS, we patients have different physical issues, and it is incumbent upon us to communicate them to others.

For instance, I have very painful joints and cannot be moved haphazardly. I also have breathing difficulties, mostly due to past trauma from the mishandling of my external ventilator. I get quite anxious when no one is nearby to put it on correctly. Additionally, my computer must always be available for communicating with others about my needs.

Some ALS patients require much more attention to their vital needs. Aides and attendants can take a little time to ask patients about special needs and get to know them before doing anything. Patients know their physical needs quite well, so it’s simply a matter of listening to them.

Reminding myself why I’m here

What I have mentioned thus far is a taste of my own real-time experience. One week in and I’m trying to get acclimated to my environment. I must get used to being unable to go outside and not succumb to the boring routine of going from bed to chair and eating unseasoned food.

I must always remember that I am away from home not because I am sick, but because my wife needs a well-deserved break from caregiving. Developing relationships with new caregivers, and perhaps enduring discomfort in the process, are small sacrifices to make on behalf of someone I love.

Here is my situation as I see it: Sometimes I must call for help, but only as a last resort. I am not a whiner nor a complainer. I treat people with respect and genuinely appreciate the help I am blessed to have. Unfortunately, every now and then, I do get loud when my frustration takes over.

I have seen similar frustration in a couple of my aides, and I understand. They have a hard job. But even though they have their own personal problems, they work through them and will not quit until the job is done.

One last thing: My wife and daughter posted information and instructions for my care all around my room, which I highly recommend for anyone going into a facility. These posts provide information about every aspect of my condition and how to address everything. Several nurses and aides were complimentary of these posts, saying they helped them a lot.

So although some may characterize this as nitpicking, the issues I have cited are important to ALS patients. In our lives, little things mean a great deal. The slightest adjustment of our bodies or a little lotion on our sensitive skin may seem like minor things to most, but they mean a great deal to us. Passion for one’s job in healthcare and compassion for one’s patient are a winning combination.

That’s about it from my outpost. To my fellow ALS soldiers, I wish you nothing but the best of care and comfort. To those who care for us, please get to know us and have patience with your patients.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.