I get lots of advice to seek help with all of this, and guess what? I do get help! I recognized early on that trying to do this all by myself was a surefire recipe for rapid burnout, so when I had offers of help, I accepted them.
Caring for Heather is not a burden; it’s a privilege. Loving someone so deeply means expressing that love in whatever way is best in her time of greatest need.
There are two levels of offers: those who generously and wholeheartedly offer help but aren’t part of my close circle, and also those from my close loved ones. While I appreciate the former, it’s not realistic to accept their help. Caring for Heather isn’t like cat-sitting or painting a shed. It involves a human with likes, wants, and complex needs and personality. Heather’s an introvert and has never easily opened up to people, so unless someone is already family or a very special friend, it just doesn’t make sense.
The other level of offers is from my close loved ones: currently two sisters, my daughter, and a former colleague of Heather’s. Each one is committed and ready to handle whatever is needed, including incontinence issues. I frankly described a poop incident to them and suggested that unless they’re prepared to deal with it, they might want to reconsider. There was no judgment from me, and each easily said it wouldn’t be an issue. (This highlights different gender roles and how they impact caregiving, which I’ll write about in a separate blog entry at a later date.)
Here’s my current setup:
- Monday, Wednesday, and Friday: Heather attends a Dementia Day Program at our local non-profit licensed Northwood Care from 9-3. They’re amazing and seem unfazed by anything. There will come a time when she’ll no longer be able to attend, likely due to incontinence, but so far it’s not even close to being an issue.
- Tuesday: My sister Hetty comes for a few hours during the day, and at 5:30 pm, my daughter Kate arrives and stays with Heather while I leave to go play music with my beloved samba band, Samba Nova. This allows me to relax and recharge while playing music with my friends.
- Weekends: My sister Carolyn often comes by for a couple of hours to visit and watch movies while I busy myself in the yard or run an errand.
- Every second Thursday: A former colleague of Heather’s spends a few hours with her and enjoys a lunch while I go out for a bike ride or a workout at the Y.
This setup is so well-organized and predictable that it really lets me recover and recharge to be a good caregiver the rest of the time. Having this time scheduled is essential to making it as valuable as it is.
I have heard suggestions that 1) I get live-in care and 2) that I send Heather to a full-time care facility to live out her days. Neither of these options is on my agenda at this time. I will consider live-in care at some point if the need arises. If I can no longer safely take care of her at home, I will consider a facility. The thing is, there’s no way that the care at a facility could even come close to what I can provide here in her own home, and I really don’t feel a need for full time help at home.
Given the current rate of progression of her condition, I can’t imagine her living more than another 2-3 years. When I reflect on my mental reserves, I’m confident I can carry on for much or maybe all of that remaining time, especially with the support people and systems I have in place, but of course if that feeling changes I will do what’s best.
I don’t see any of this as a burden; I see it as my purpose.
So much love in your words, John. Wishing all folks had a partner such as you. And you’ve found a way, with a little help from your friends, to make lemonade. 💗
Hey John, I like this, it’s perfectly said. The best care for a spouse is at home. You know her better than anyone will. At the same time, you are taking care of yourself so you can keep going, keep caring for Heather, and you will still have a life in the future.