I am a pretty positive person. I try to find the silver lining or at the very least, the lesson to be found in every situation. In looking back over these last 5 years I have realized a few things both generally and personally.
The healthcare system in the U.S. is broken. It really doesn’t care about health, it only cares about the money it can make from our health. If there is no money to be made, and no treatment to give, then you are really on your own. With any of the dementias, on your own and alone with no plan other than “get your things in order.”
Caregivers are overlooked, undervalued and ignored. Don’t get me started on the phrase that encompasses over 40 million caregivers in the U.S. which is “informal” because we are not professionals. Yet, we perform the same tasks, if not more, than what professional caregivers do everyday, and we do it without the training or the compensation.
Dementia is a relentless, horrific, progressive fatal disease, and just when you think it can’t get any worse, it shows you that it can. There is no stopping it, there is no changing the outcome no matter how much you try, and even if you are the “perfect” caregiver (p.s., no such thing as a perfect caregiver) the person you are caring for is still going to die.
Personally, you find out pretty quickly who you can count on when you are a caregiver. The resentment and the disappointment that you feel about people who you thought would always be there for you is just one more heartbreak layered on top of what you already feel from caring.
On the positive side, I have learned that friends can be friends even if you’ve never met them in person. I have friends all over the country now, and a few in other countries, that I have met through Daughterhood, through the podcast, through virtual groups, over Zoom, and on social media. These are all people that I worry for, and pray for, and hope, at some time in my life, I can actually sit across from and have coffee with. They are also people who have supported me, and offered me comfort.
The biggest lesson I have found is that you cannot do this alone. Early on I added a therapist, who helped me see the strengths I didn’t know I had and gave me a safe space every week. Also, hiring a caregiver to come in is ESSENTIAL. You need time out. Do you know for 1 in-home caregiver you would need five people to take their place? Three daily and two for back up for those three. Think about that. But we run ourselves into the ground and think that’s okay because we are the only ones who can do this.
Support group(s). The Daughterhood Circles have become one of my lifelines. The women I have met validate my feelings every time we speak. We are continually not alone, together. I also learned that it’s okay to be vulnerable with people who are safe to you. If you don’t feel like you have those people in your life, believe me, they do exist, you just have to find them.
My husband and my children are rock stars. The sacrifices they have made, the many different ways they have had to share me, and my time, are countless. I don’t even think we realized when we started this what it would mean, and yet they have done so with love, support and understanding.
While moving my mother into our house was the right decision, and the necessary decision, it has not come without a price. In the last 1825 days I’ve had ten days off. Ten days when I was in charge of my sleep. Ten days where I wasn’t attached to the monitor. Ten days where I didn’t have to sprint up the stairs to make sure she wouldn’t fall. Ten days.
My health has suffered - I have horrible insomnia, I can’t seem to ever relax; my shoulders are in their new permanent position up around my ears; my back hurts, my hips hurt, my feet hurt, my thinking if fuzzy; sometimes random spots on my skin burn from the inside out. I drink coffee for sustenance, and I consider potato chips, ice cream and chocolate the big three of nutrition. The only reason I don’t drink alcohol every night is because I am on duty all night.
Losing my mother day by day, year after year has been the most difficult thing I have ever done, and every time I think “oh this is bad”, it gets worse. Every single time. BUT, now, after speaking to both professionals and fellow caregivers, I have learned that I matter too. This is a lesson that has taken me the better part of five years (and 53 years overall) to realize, and believe me, it was not easy. It is continually a work in progress. The difference now is I see it as necessary. While hearing the words “self-care” still makes me bristle, quite honestly, there has to be room for both, or this disease will claim two people instead of one.
Even if I knew then what I know now, I would still have made the same decision five years ago. I can absolutely say I love and adore my mother AND this is grueling and heartbreaking. They can, and do, exist in the same space and time, and that’s okay.
I don’t know if my mother has another five years in her. She may. She may have longer or shorter, I have no idea. But I do know that caregiving has given me the laser focus of what is important in life and what is simply noise. And like everything else in life, the lesson is in the balance.