It began with my father’s dialysis and with occasional hospital stays, hip replacements, etc. Next was my dad’s dementia and suddenly realizing things were being missed. My parents no longer worked together with the same kind of smoothness. The gaps in their memories would occasionally align and something big would fall through the cracks.

Whether it is a sudden shock or it has slowly crept in, parental caregiving is a challenge. Nobody told me I would be going through peri-menopause, raising children and caring for my parents all at the same time! My parents were getting older and my children are too; one thought makes me feel impossibly childish and the other impossibly old!

My father passed after 6 years of intense caregiving and a million overwhelming and blessed moments. We are still lovingly tending my mom and learning more along the way but here are my top 10 “wish I had known…”

  1. We all have our own definition of a life worth living. Be respectful of their choices even when you don’t understand them.  It is their health and their life.  Yes, I know it affects you too and I know it is sometimes heartbreaking to honor their wishes but there is a difference between sharing your feelings and coercing.  They have rights.  No matter what you believe, if they are capable of making decisions about their health – honor them but share your ideas and concerns.  My mother was a doctor’s daughter and I am a holistic healing practitioner – we found balance. Keep an updated list of their medications and doctors.  Depending on their current health – check in with them as often as once a month.  There are apps for this that can be easily shared.
  2. The need for more care will seem sudden at first.  They may have been hiding it from you or they may not have accepted it themselves.  (Unless for some reason, it is sudden.) Any anger you may have, comes from your fear of losing them.  It means you value them and want them in your life longer. When discussing it, you may find it helpful to start there, in everyone’s vulnerability.
  3. Be prepared to take over their finances.  Yes, their finances are their business but unless they are wealthy enough to have a personal finance manager – you will be taking this on.  Sit down and go over all their bills, how they are paid and know their passwords. Ultimately a power of attorney is what you need but it can take some time and extra effort, especially if the need is temporary, which sometimes and hopefully it is.  But I can’t stress this enough – it is so helpful to have the ability to manage things right away, with ease, because you are going to be busy and emotional!
  4. Think and talk a lot before altering their current course. It’s important to consider whether or not they are strong enough for the big changes and risks that might come with new ideas. While we must accept that “had we known,” we would have made different choices along the way, that doesn’t mean that it’s a good idea now. For example we found ways to reduce pain medications with micro-dosing cannabis and that was a great success. We also tried to alter some long term psych meds to reduce stroke risks and that went horribly wrong, resulting in months of very difficult recovery!
  5. Talk about the tough scenarios.  Ask if they have an Advanced Health Care Directive.  Read over it together and get as much clarity as you can.  Make sure to let them know you are there to listen and understand – not to change their minds.  If they have put you in charge of decisions, spend some time in contemplation and let them know if you think you might struggle to uphold their wishes.  Sometimes the loving thing is to suggest another person who you think might be more capable. 
  6. Open up a dialogue with your siblings.  Having some ideas of how things will be handled ahead of time can avoid untimely disagreements. Remember, you are all sensitive and uncomfortable but the intention is to lovingly serve your parents.
  7. Be prepared to find support for you.  Even if it is just a friend who will listen or take an hour or two to visit with your parents while you rest or run errands.  Get humble, make a request and if you have to, request again from someone else. As caregiver types we often struggle to ask and when we receive a “No” we tend to martyr ourselves and push on.  A “No” doesn’t always mean never. When you get one, just realize they may not be capable at that moment and seek another source. There are many who will help when they can.
  8. The burden is heavy!  It will take you to your shadows and demand personal growth and reflection. Be willing to walk through the darkness towards your truths, because if you don’t, anger, fear, shame, resentment…they will make the work that much harder! 
  9. If possible, move them into your home. It’s easier to manage one household than two. You will have more clarity and peace of mind because without having to make an extra trip, you can see how there are doing everyday. The greatest benefit is simply more time shared! Our most precious moments have been in the “in between”, as I pass from the restroom or while I sit and cook dinner.
  10. Your best friend just might be a doorbell from the hardware store.  There are all kinds of gadgets and gizmos for keeping an eye on them, for helping them to reach out to you when they need to, but if they live in your home, a simple doorbell is the cheapest and easiest.  At times when it is urgent or they are slightly cognitively impaired – you are just one button away. I do appreciate the video camera I have now, but it does reduce mom’s privacy so we waited till it seemed absolutely necessary. It saves me trips to her room and calms me on nights when she is not doing well.

Lastly, You are human!  They are human! Yes, your choices, your help and support, your attention and intention matter but ultimately – we are not in control.  We alone cannot stop aging, decline or illness. Don’t let the fears run you ragged and beat you up. We can only do our best – give yourself love and grace and understand ultimately, death and change are normal and natural. Someday they will come, no matter how well you manage things.