One year in and struggling

Hi, and welcome to Connect, @anything4him I'm Scott, and I was my wife's caregiver for 14+ years as she fought her brain cancer. She was diagnosed at 47.

I know that each patient and caregiver is different, but here are a couple of changes I had to make to help myself as her caregiver.

I created what I called "30 Second Vacations" when I'd read one newspaper article, read a few lines in a book, etc. I realized several of my pre-caregiving chores had to go. Dust bunnies became household pets, I wore wrinkled shirts, meals became whatever my wife would eat and were simple and quick, and I turned my phone to silent. (Just a few of my changes.)

I also began a list of things I was not able to do as a caregiver that I promised I'd do in the future when I could. I know caregiving is tough, relentless, and all-consuming, but I also know my wife literally lived for my help. That eased my burden a ton.

Strength, Courage, & Peace

@IndianaScott Thank you! Yes, I do need to learn to let the dust bunnies exist. I appreciate you sharing

I say this as a 61 year -old who has been dealing with an aggressive stage 4 cancer for two years. I'm currently on my seventh different treatment. I also live alone and have been my own caregiver 99% of the time, with other people moving in for a few days during health crises.

Do you really need to take all of this on yourself? Can your husband not, at least, do his own research and manage his own appointments, if not also help with meals and housework? Can he not manage by himself for a few hours or a few days while you go do something to enjoy yourself? Is he not still a competent grown man?

After writing the previous comment, I thought a bit more and realized your situation is less about taking care of your husband and more about your internal state.

Are you feeling like if you put lots of pressure on yourself and do lots of worrying and extra work, that God or the universe will reward you with a better outcome? So when things don't seem to be improving as much as you'd like, you keep increasing the pressure?

@val64 If you cannot be nice, please do not post.

@anything4him

I apologize if my comment was inappropriate to your situation and that I upset you. I just find that accepting things I cannot change, not worrying or trying to be Superwoman, is the route to peace. Different people find different ways to do this, whether it be by choice, meditation, prayer, breathing exercises, or talking to a therapist. I hope you find the right thing for you.

I married a Superwoman who takes care of me. She just finished up her last infusion and is recovering from ovarian cancer. I have Waldenstroms (non-Hodgkins lymphoma) and I had been her caregiver after her surgery and through her main chemotherapy. But she is kinda OC and has to be in charge of the household. That is who she is, and I love her. She now relaxes by doing gardening, reading this forum and the NY Times, and watching her favorite shows. I hope you find some time for yourself and time to do your favorite things at least for a few hours or minutes a day.

Here are some resources to explore. I have experience with all of them and can highly recommend them. See https://www.powerfultoolsforcaregivers.org/ This course “Powerful Tools for Caregivers” is offered by Zoom or in-person and is available across the country and at different times. I found it very helpful in aiding me to focus on how I could improve MY life while still caring for my husband, Mayo also has a great weekly Zoom Support Group called “Caring for the Caregiver.” I participate in this group when I can and it is excellent. In addition, there have been several participants with husbands dealing with prostate cancer so you will find folks there who know what you are going though, https://connect.mayoclinic.org/event/caregiver-support-group-25-57b5467d/ Finally, I have used a Meditation App intermittently and have found it helpful to calm me when anxious and frustrated. It was developed by the VA to help Vets deal with PTSD. Look for “Mindfulness Coach” in the App Store. GOOD LUCK!

@IndianaScott
30 second vacations! Love this! Thank you

@alwayda Thank you so much for taking the time to share those resources- very helpful & much appreciated !