How do you cope with the memory yo yo?

@mattk56 I cry and pray. But I also have the good fortune of having long term health insurance which pays for a private duty caregiver which I make myself use three or four times a week for at least 3 hours. Yes, I feel guilty leaving him but have found the alternative to be massive anxiety in the pit of my stomach wondering how long the good time will last. Today I went to a coffee shop and then a park to walk. I called my sister and vented. It helps. Take care.

Hi, @mattk56 I'm Scott and I was my wife's caregiver during her 14+ year war with brain cancer. I wish I had some magic potion for those of us doing this caregiving journey. Mayo Connect helped me beyond measure -- so it's great you are here!

I found what I called 'minute vacations'. Just a break when I'd read one article in the paper, a page in my book, or sometimes lie on the sofa and pound an old pillow I kept there for that purpose. It also helped me to accept that 'good enough' in some things now was OK. I quit ironing, dust bunnies became accepted 'pets', and a multitude of other adjustments of things I realized had to take a backseat to my wife's care needs.

In our case, we knew my wife's case was terminal, so I began a personal 'To Do Later' list. Things I'd be able to do again or do when time was no longer taken by caregiving. Some were small (write a friend), some larger (paint all the wheelchair nicks in our walls), and some big (visit our adult children's new homes). This probably isn't for everyone, but it gave me a way to see my future positively and that it would need me.

I send Strength, Courage, & Peace

@mattk56 My sister had a craniotomy for glioblastoma this spring, followed by radiation as well and her memory is completely messed up. I'm her caregiver and a couple things that helped me have been:
1. Reminding myself that I'm never angry AT her. I am angry AT cancer. I'm allowed to be enraged at cancer in a way I would never allow myself to be angry at my sister. That little shift let me process the anger without feeling guilty.

2. My therapist helped me realize that I react so strongly to her memory lapses because it frightens me. It's an undeniable reminder of what has happened and what is coming. It's a fear based response. I'm not a "bad person" for losing my patience. I'm a frightened and sad person.

3. My friends are so important for processing grief! They let me vent, be angry, cry, make the inappropriate jokes that help me cope with the insanity of it all.

4. I'll go to the thrift shop, buy $5 worth of plates or glasses, put on some safety googles, put the dishes in ziplock bags, and then smash them with a hammer to vent my anger. There is something deeply satisfying about physically getting the rage out. Breaking glass is so cathartic. It's like it resets by goodwill and patience.

Hope you find support and relief. This disease freaking sucks!

@mattk56
You have found us! The caregivers who care and at the same time are overwhelmed. Their will be times that you don't get it right. Don't let it stop you. No one can totally understand your journey. Caregiving is hard and all you can do is know that the person you care for are not like they used to be. Yes, you might have some good moments and then some bad. This site has been a way to see that others care and they get it! Talk about what you need to and do the best you can. Family and friends can let you down. Here you are able to ask important questions and hopefully get answers or suggestions. God bless you and your family.🫂💕

@mattk56 I feel the same way, my husband had a craniotomy in April and radiation and chemo now.