Don’t Do This Alone
Make a care team.
What is a care team? Just a group of people that care about your parent that are willing to commit to help. I bet a lot of people love your parent. But some of them can’t/won’t be around to watch your parent deteriorate. It hurts them too much, or reminds them of their own fragility, or make them feel yucky. That’s okay for them. It’s a loss, on top of what you are already losing, and I’m really sorry. Receive their help as they can give it. But they aren’t on your care team.
Who is on your care team? Your siblings might be. A neighbor that can report what your family member is doing. Here are some people I would suggest:
Your parent’s primary care doctor/memory care specialist
The social worker from that practice if they have one. Ask.
A financial planner if you have one. Or a case manager if your family is receiving public benefits.
Your siblings and relatives- ask them if they are willing to do this with you. Be very specific about what you need. Or maybe they just want to support you while you support your parent. That is also welcome.
Paid help.
Hospice team (we had hospice for over 2 years for Mom) can provide 2 hours of care, respite and help a day. Many insurances, including Medicare, fully cover the cost of hospice.
Your partner. Ok, this one is tricky. Your partner cares. They may even love your parent. But keep in mind that while you are caring for your parent, your partner may be: alone, caring for your children, making food, paying bills, running the house. This is how they are showing you love and care. They are part of your team even if they don’t do the daily “care tasks” for your parent.
Anyone else who is willing to be there to help you. When people ask if they can help, the answer is yes. And then give them something specific to do. “I would love it if you could let my kids borrow a boardgame so they have something to do while I’m helping my parent” or “A meal would be so welcome right now. My partner has been alone for days and it would really brighten her day”.
For Patients and Families:
I called them for the first time after spending a week at the beach with Mom and feeling just so drained and scared at what was to come. The first person to answer the phone is sort of an intake person. They are always really nice and need some basic information, but the person you really want to talk to is a counselor. You can call and just ask for a counselor. This is particularly helpful if you are crying.
Scholarly Articles:
For those of you taking care of children and parents, I really related to the idea of being a “sandwich” generation.
A lot has been written in support of caregivers. Hilarity for Charity might be a good start. Somehow they made being a caregiver feel slightly “cooler”.
Mind/Blue Zones Diet- We started to really pay attention to our own health after Mom’s diagnosis. Here and here are two resources I found helpful about the MIND diet. I also really found some comfort in the Blue Zones way of eating (Affiliate link to Blue Zones cookbook), books (Affiliate link to Blue Zones Book), and Netflix movie. I loved the Blue Zones ideas of not just living to 100, but of doing this in a healthy and vital way.