Now What?

When I first took on the care of my mom and dad (specially my mom) five years ago, I was dealing with depression in a big way. I refused to let that stop me – I felt that caring for them would drag me away from myself and give me a purpose. I knew it would be hard, but I avoided thinking about just how difficult the road would be.

Yes, it was the hardest thing I have ever done, that I can remember, in my entire life. Twenty-four/seven care, when my mom was demanding physically and emotionally and my dad was falling on a daily basis but still driving his car and taking walks. After a year, we started having help come in so I could get out of the house without worrying about terrible things happening while I was gone. I thought it would make life easier, but although I did get out to shop, my parents were never happy with the hired caregivers. They didn’t do things the same way I did. There were things they were not allowed to do (dispense medicine) legally. Sometimes I came home to disaster. Once I was even asked to come home because of a problem.

A year and a half later, when we were sort of acclimated to the hired caregiver thing, I was frankly still utterly exhausted. Mom was waking in the night thinking she was in the garage and when she called dad’s name he didn’t hear her. So she got up. And she fell. And she fell while walking with her walker. There was other behavior that wore me out related to her dementia and bathroom issues. I found it more and more difficult to be patient and loving. I thought if I could just not have to care for her all day and all night, things would be better. It all came to a head before I had to have surgery, and mom was placed in a nursing home. I thought: now I can be the loving daughter I wanted to be. Things will get easier. And they were, in the fact that I was able to sleep all night without interruption. But mom was extremely agitated at the nursing home, and it didn’t get any better on that front. I spent time running back and forth to see her with dad. Sometimes dad would drive himself. Then that had to stop, because it was just too dangerous for him to walk from the car to the building without a walker. I started driving to the nursing home every day.

When it became apparent that mom was in severe decline last month (declining all year), I thought it would be a relief when she died; a relief for her, and a relief for those of us left behind. I was sure that once I no longer had to visit the nursing home on a daily basis, I would have the time and energy to get something done here at home. Apparently that is not how it’s going to work. I’m lethargic and just as exhausted as when I was going out every day. Dad and I have lost that daily focus.

So now what? We are people who are not good at structuring our days – at least I am not. I have things that need to get done. Cleaning and sorting and organizing. I have forgotten what I love to do – I don’t remember what fun is. Part of me wants to get in the car and just take off on a road trip. I want to take craft workshops, art classes again. The other, exhausted part of me wants to know who I’m kidding. I have no idea where the energy would come from to do even the things I think I’d like to do.

Now what?



Sometimes I get bogged down in the difficulties involved in caring for my parents. I often forget how my life has been enriched by their presence here.

Before my parents came to live with me, my house was in total disarray. It’s not in tip-top shape, now, but I have donated or tossed an amazing amount of my clutter.

I was very depressed, and the dishes and pans would pile up in the kitchen, only getting washed when they were needed. Now, pans may sit until the next day from time to time, but I try to keep the counter tops as clear as possible.

The laundry area was impossible to navigate, there was so much piled up. The bathroom next to the laundry area (the only one downstairs) was not usable because I had taken the toilet out to replace the ring and found the floor needed repair… and decided to rip off the wallpaper while the toilet was moved… and then I wound up having surgery and the room became a place to throw everything. When my mom needed to move here, we hired someone to finish the work I started and put in a new toilet. How wonderful to have a bathroom on the first floor again!!

The flooring on the first floor was in desperate need of replacing. My parents arrival forced that change as well. Such a relief.

We added on to the house, which was not something we had ever planned on, but that addition took the place of a screened porch that was an eyesore. I’m still dealing with all the crap that we had thrown out there to “take care of later.”

The biggest change has been a sense of purpose. Two years ago, I could not get myself together to do much of everything, but when it became imperative that mom and dad move from their home into a place where they could have help, I was pulled body and soul into the here and now. Reality check. I did not want to live like I was living.

I’m a hoarder. I have so much (still) that I don’t need, and having my parents here forces me to face this on a daily basis. I can’t retreat into inaction, or everything falls apart, and the fallout is impossible when that happens.

I suppose I should mention that I love my parents and it’s great knowing that I can help them remain in a home atmosphere for as long as possible. Sometimes they seem so miserable that I wonder why I’m doing this, but I know they would be more miserable in a nursing home setting so I have to keep that in mind. It’s hardest when my mother says things like “I feel like I’m not long for this world” or “I don’t know why I’m still alive”….

But I am grateful. Really. I am.