What I Wish I Knew Back Then: Lessons Learned from Family Caregivers

mother and son

In research for this article, I asked a few of my clients for some insights into what they’ve learned from their caregiving experiences, and what they would tell their younger selves given what they know now. I expected to receive a series of tips and practical advice but instead what I got back was an abundance of thoughtful, heartfelt and emotional feedback that I am so pleased to be able to share with you. Of course, all names have been changed but I hope that those who are starting their caregiving journey can benefit from this article by learning something they can apply themselves and more importantly, know that they are not alone.

Lesson 1: Be proactive and make changes before it becomes necessary

Mona’s mom Victoria, lives in an assisted living residence in Vancouver. Mona is the only child and lives in L.A.. Five years ago, Victoria, at Mona’s encouragement, moved from her independent apartment to an assisted living residence.

“Looking back, I would have somehow had mom transition into independent or assisted living earlier. As hard as it would have been for mom initially, I think she would actually have adapted better to a group living situation, and then made the next transition from independent into assisted living easier.

As mom aged, she lost her ability to initiate friendship and join groups, and her ability to adapt to a new neighborhood. If she had moved earlier, she would potentially have enjoyed living there more because she was still mobile and independent enough to get on the bus and get out and around by herself. She might have relaxed a bit more and reached out to make friends inside the residence. This thinking is certainly counterintuitive to the theory of preserving independence until the last possible minute, but for mom’s particular circumstances (a widow, few hobbies and friends, 1 child living long-distance), it might have been the best option.”

Lesson 2: Know your boundaries

Jennifer is a family caregiver for her aunt Linda, who lives independently in an apartment which she moved into from a large house 4 years ago. Coming from a close family, Aunt Linda has been an integral part of Jennifer’s family and since Aunt Linda never had children of her own, Jennifer and her brother have been taking on some Aunt Linda’s care.

“If I could go back in time I would have set boundaries for myself. It’s so easy to get lost in all the issues, appointments and things that need to be done. I would have realized that this is for the long haul and the time commitment can get overwhelming if you don’t set boundaries for yourself.

I would have also set some parameters about financial commitments. I didn’t realize all the direct and indirect costs that would accumulate over time. There are direct costs in say getting groceries for Aunt Linda, but more importantly are the hidden costs in taking time off when I should be working in my business, the gas consumed in driving to visit Aunt Linda and taking her to appointments, and the emotional anxiety that arises when my brother and I don’t agree on things. Setting and communicating boundaries in advance would have definitely helped.”

Lesson 3: Get other affairs in order

Sally’s mom Anita lives in an assisted living residence. Although both Anita and Sally are in Greater Vancouver, Sally lives in Surrey while her mom lives in West Vancouver, and in the best of traffic, the drive is over an hour for Sally to visit her mom. Anita’s cognitive decline has been rapid over the last year, and Anita will need to move to a care residence soon.
“I think the most important thing is that I am so thankful for, is that my mom was so organized from a financial perspective and had all of the paperwork intact. I have seen what so many others have had to go through and my heart goes out to them if they don’t have the paperwork ready.

Having the Power of Attorney paperwork ready to go and simple with one main power of attorney and a backup has simplified my ability to respond accurately and efficiently.”

Lesson 4: Help your parent keep socially active

As Sally’s mom downsized from her house into an assisted living residence, Sally noticed a change in her mom’s level of socialization and realized the impact that friends and social activity have on one’s wellbeing.

“I have learned that there comes a point in time when as good as family friends are, they go on with their lives. I don’t know if they realize how much help they are to the family when they visit. It’s nice for mom, but it is appreciated more by the family.

When my Mom went from independent living to assisted living it was only about 5 months when the friends stopped visiting. Once her friends stopped coming, my mom’s health deteriorated even quicker. “

Lesson 5: Plan ahead and have a contingency plan

Jennifer wishes that she could have had certain conversations with Aunt Linda before Aunt Linda’s cognitive decline started. “I would have had a conversation with Aunt Linda about what she envisions for herself in 2 years, in 5 years and beyond. Although it is not too late to have it now, her mindset is very different now, and much more resistant. If I had started the conversation before there was a need to make a decision, she might have been more honest without feeling any pressure. And we could have had those original plans to look back on and make comparisons to the current situation. It would have added an element of accountability in the sense that the things we are planning for Aunt Linda now which she feels are “unnecessary” or “forced” are actually things that she said she wanted for herself.

What is clear from the above is that every person ages differently and experiences different challenges along the way. The common thread is that as family caregivers, we all want the best quality of life for our loved ones and in that pursuit, sometimes we have to be the initiators. We have to be the ones who start the conversation, encourage proactive changes, and try to preserve the lifestyle elements that are important to our loved ones. With advance cooperation from your loved one, planning ahead and shared responsibilities with family and friends, this can be successfully achieved.