What I've Learned

It’s been a while. This spring (my leave of absence) unfolded in a very different way than I thought it would. 

With it, my caregiving journey entered a new chapter. I have learned a lot over the last several months about the things that I’ve done right and the things I need to change moving forward. 

What I did right

1. Fighting to keep him home over the last 6.5 years.

2. Always seeking out new opportunities to enhance his quality of life, like Stroke Camp

3. Learning new skills in wound care, medicine management, giving him a shave (I call myself “The Salon” and services sometimes “cost” 10 million dollars), etc.

4. Being his fierce advocate

5. Somehow balancing all of the caregiving responsibilities with a full time teaching job

Things that need to change

1. I have to allow him to be as independent as possible. Before, I would step in and do everything, whether it was putting on his shoes, helping with toileting, etc. When there were times when I would encourage him to do it on his own, he would say he didn’t feel up to it, and I’d just do it without hesitation. All the while, I’ve known that I was doing things that he actually could do. I realized that this made me feel like “the help” for too long, and I felt resentful that he didn’t even want to try. This is going to be hard for me to stick to. It takes him a long time to do things on his own, and it’s hard to see him struggle, but with my therapist’s help, I have realized that I am actually allowing him to be as independent as possible. 

2. I have to have clear boundaries of what I am willing to do for him and what he must be able to do in order to stay at home. Over the years, his needs increased slowly, and I just thought it was the next step, and I was expected to handle it. I didn't’ realize how extensive his needs were becoming. Like the frog in the boiling pot who doesn’t feel the water getting hotter and hotter. I’ve realized through these last months that I/we need more support. 

3. I can’t protect him from the realities of life. Back in 2023, after he had been hospitalized with Covid, the adult day center that he attends started talking about a long term care placement and how it might be time. I knew in my heart it wasn’t. They agreed, but with conditions. I had to bring him there in the morning and always make sure there would be someone at home to greet the bus if he was dropped off. I never told him about this discussion. I didn’t want him to feel bad about himself or worry about the future. But ultimately this led to him being even more confused by the events of the spring. Now he knows that a nursing home might be necessary one day if his needs surpass what we are able to do at home. 

4. The guilt. When I don’t go to visit him one day, when I leave after a short visit, when I know how much he just wants to come home. Need I say more?

5. I can’t go back to how things were before this spring. I have slogged through the Long Term Care Medicaid application in hopes that we can get more support coming into our home to take some of the responsibilities off of me. I am hopeful that someone could come in Monday through Friday in the morning to get him up and ready for the day, so that the added pressure to get out the door so I’m not late for school could be relieved. 

6. I have to consciously reframe my thinking. Instead of berating myself because I can’t do it all, I have to focus on what I have done for him. I have to keep telling myself that even though I need help, I am still and will continue to be an amazing caregiver to my husband. 

7. I have to be confident and unapologetic about my needs and not let other people’s opinions make me second guess my decisions. I know I am doing the best I can with love and patience and hope. 

I know these things are going to be hard to change because they are not natural to my personality and previous behavior patterns. But I will continue to try every day even if I’m not always successful. 

Overall, I have learned that I am just as important in my relationship with my husband as he and his needs are. It has taken me a long time to get here, even though many many people have tried to help me see it over the years. I couldn’t before, until it was almost too late. So if you are reading and identify with anything I’ve said, please know I understand and have been where you are. Ask for help. Share your feelings. Most importantly, take care of yourself.