Advice for the New Caregiver

2017 Walk to Defeat ALS

My caregiver journey started with buttoning Patrick's shirts and clipping his nails. Fast forward about five years and my list of duties includes everything from showering and bathroom to managing equipment and prescriptions (and all things in between).

Being that November is National Caregiver's month, I've decided that I have some advice for the new caregiver or advice to my prior self of five years ago. At this point, I have a pretty good understanding about being a caregiver - I guess I consider myself an expert in the field (no credentials, no certificate, no three letters after my name... just on the job experience).

My first bit of advice is about... advice

Take it or Leave it... "Friendly" Advice
Through this journey you will get lots of advice, suggestions and opinions. Honestly, I've received some great advice from a variety of sources. Sort through the advice; it's ok to ignore some, it's ok to laugh at some, and its ok to say thanks, but no thanks. Generally people have the best of intentions so be thankful for their interest, but know that you are not obligated to take it.

With that being said, you are welcome to embrace my "pearls of wisdom" or "discard in file 13." Or do what I generally do - "cherry pick."

No One Stays the Same...

One of my favorite artists, Leonard Cohen states in the song, A Street

"I’m standing on this corner, where there used to be a street"

This is such a great description of how it feels when your world is abruptly changed with an ALS diagnosis. Life as we know it has ended and where do you go from here? I don't have the answers for that, all journeys with ALS and in life are unique. Which way do you go, left or right? I can remember standing on that corner for a long time when Patrick was first diagnosed feeling paralyzed.

You'll stand there for a while too... wallowing in self pity, angry at the world and unsure of where to go from here. It is one of the most painful memories I've had on this journey. 

I can guarantee you one truth, you will never be the same again. None of us get out of this journey the same as when we started. Where we end up, I don't know the change is ongoing, but I know parts of me are profoundly different than five years ago.

I'm not the only one in the family that has changed on this journey. Caitlin, who is now a Gator at SFSU, came home last week to join us on the Walk to Defeat ALS. While I drove her from the train station she talked about the sushi place she liked and the theater she went to with her roommate. During her discussion, she mentioned the handicap access at both locations. It wasn't her primary focus, it was just her observations of "how dad could get in with his wheelchair or not get in as the case may be." It dawned on me that she would forever be influenced by this journey. I'm not going to qualify this change as good or bad, frankly it just is.

You Get to Have Feelings Too...

You will not make it through this journey without allowing yourself to mourn, be angry and experience sadness. You will have losses on this journey. No matter how you manage caregiving, you will make sacrifices. You cannot take care of an ALS patient and continue to do everything else you did prior to ALS nope, it is not physically or emotionally possible. You are allowed to be sad and mourn these losses.

I quit my job four years ago and over the past few years limited my volunteer work. Do I miss these activities? Of course I do. Do I regret my decisions, no I don't. But that doesn't mean I don't feel a sense of loss and sadness. I give myself permission to grieve, I find it's easier to manage feelings when they are acknowledged and recognized. It also says that I am important and my losses are as real as anything else. Which leads me to...

You Are More Than a Caregiver

Yes, you will give things up on this journey, but don't give up the things that make you - YOU. It is important to have an identity outside being a caregiver, don't get swallowed up. For many years prior to ALS, I put on a Girl Scout Halloween party for over 100 scouts. With a group of Girl Scout friends, family (including my supportive husband, Patrick) and older girl scouts we put together a fun evening that included everything from a Halloween dinner with zombie wait staff doing the thriller dance, to mad scientists, and gypsy fortune tellers. 

Past Girl Scout Halloween Party

No, I can't put the energy I use to into a Girl Scout Halloween Party. But I still enjoy Halloween by doing a family dinner, decorating the house and helping with the grand kids costumes. I get lots of nice compliments from the neighbors on our decorations and it allows me to continue being creative... I've been blessed with a supportive husband who rarely says I think that's a bad idea. Although, he did tell me that the 9 foot T-Rex skeleton is too big to store in the garage.

You need to determine what things you love and want to continue, than adjust and find a way to continue to do these things albeit differently. You are more than just a caregiver, find other important things that define you. 

How We Measure Up

Halloween 2017

I'm not sure why, but you will make comparisons to other caregivers. I had a fellow caregiver tell me, "you are amazing, how do you do everything." This came from someone I thought was in the "sainthood" realm of caregiving. For some reason we make comparisons; wow, they are doing so many activities; wow, they are really happy all the time; or wow, how do they have so much energy. Yep, we compare. I give myself permission to make comparisons, but I stop short of berating myself for things I don't seem to do as well. The truth is we only see what is presented to us and I suspect even the best caregivers have bad days.

When you're at the beginning of this journey, its really easy to say, I won't do this or I would never do or say that. Be careful, things often look different five years later and you might surprise yourself. Don't pass judgment on other caregivers' decisions. We all make the decisions that work for us based on our strengths and in a particular moment.  You may or may not make the same ones. That does not make one way right and another wrong. We are different people all working to meet the challenges presented.

Dumb Things People Say...

If you haven't already, just be advised that you will have strange, unthoughtful things said to you on this journey. Very early in Patrick's diagnosis at a party, a woman (someone I had just met) proceeded to tell me why she would leave her husband if he were to get ALS because the sacrifices would be far too great for her. I wish I could say I said something clever, but I just stood there a bit dumb founded. She went on for at least five minutes explaining all the reasons it would be too hard and at the end handed me her phone number and told me to call her anytime. All I can say, is that her husband is one lucky guy;) Yes, I'm being sarcastic and no, I never made that phone call.

Sometimes I think people just don't realize what they are saying. Which leads me to...

Forgiveness

Get angry, stomp around, watch revenge movies and then... forgive. You just can't hang on to things forever. This is NOT a fair diagnosis and the journey does NOT get easier. Allow yourself to feel and be angry and then let go. Let go and forgive, not for other people's benefit but for yourself - you will go crazy if you don't.

Forgiveness is so powerful. It allows you to reflect and release... It takes the power away from ALS or the person who wronged you and returns it to you.

I've also learned to forgive myself. I'm not a saint, I get tired, I have bad moments and I have anger; at the disease, at stupid comments and at a variety of other things. I forgive myself and acknowledge I'm doing the best I can and frankly I'm doing ok as a caregiver.

Awesome Responsibility

Being a caregiver is by far the most awesome responsibility I've ever had. It's a bit scary at times. I remember when they first delivered and spent a couple hours explaining the respiratory equipment. I kept thinking, am I the right person for this, I have a degree in accounting. The truth is no one would volunteer for this job without loving the person they care for, it's all about love.

Finally, and most importantly you'll be fine and you'll make things work. Remember the saying, "you can't see the forest for the trees." In ALS this is a a good way to look at things. Concentrate on the trees immediately in front of you and leave the forest for another time. Not the usual way to look at problems, but a little at a time tends to work with ALS.

Happy National Caregiver's Month and a huge thank you to all my fellow caregivers! Never doubt what you do is important and makes a difference. 

I'll leave you with some pictures of our Halloween decorations. Happy Fall and Happy Halloween!