Mom Struggled With Decision-Making as a Caregiver

It is so easy to sit in judgment of the decisions others make - too easy. People try their best to do the right thing, but sometimes it's very hard for others to understand.

This was the case with my Mom and Dad.

Becoming the decision-maker for your loved one with Alzheimer's

Mom became the decision-maker for Dad. This was a role she had never been in before. She openly told me she never had to make any big decisions in her life. That helped me to understand, but it did not decrease the frustration - sometimes fear and anger - I felt over many of the decisions made.

We, as her family, wanted to help with that load but she was reluctant to allow us to. I'm not really sure why. I can postulate though.

Dealing with caregiver burnout

Very often, Mom's decision was to do nothing when something should have been done. I believe the load Mom carried was so large that it paralyzed her. She needed time to think.

The problem was she was so exhausted in her caretaker role that she couldn't think about what to do next. She was struggling just trying to cope with the changes in Dad's mood minute-to-minute.

Managing new and difficult behavior

I wondered if she was afraid of Dad as he changed. I asked Mom directly if she felt she was safe with Dad. I asked her that same question at different times through her journey with Dad.

Even though we know the changes in Dad were the disease, I needed to know Mom's safety wasn't at risk with Dad. There was never any hesitation when she would tell me she was still safe. Mom would not allow others in the home as this would upset Dad. Again, Mom had so much to contend with - more upset from Dad meant more upset for her.

However, Mom needed support. She needed a break from Dad, even if it was to go get a few groceries. Mom never did allow the helping agencies to help. No surprise I guess, she wouldn't let us help either.

Staying safe at home

Dad had been having a lot of falls in the home. Mom had been instructed by the doctors that each time Dad fell, he was to be medically assessed. Another blow to the head could be fatal. For a time, Mom did send Dad to the emergency room. After a longer while, she stopped.

Mom stopped telling me when Dad would fall until days later. I asked if he had seen a doctor, she'd say no, and an excuse would follow. I don't mean that to sound harsh but I failed to understand why she hadn't followed through. I'd get upset and remind her of what the doctors said to do. Often, I get off the phone and just cry. I felt helpless.

Mom repeatedly told us, her children, that she needed us to help her make the 'big decisions'. Problem was, she wasn't ready to hear what we felt was best for both her and Dad. When we knew Dad was no longer safe at home due to falls and wandering, we would try to talk to Mom about this.

Each of us has a different style in how we would approach the conversation with Mom. Each of us was told the same. "I'll think about that." Eventually, we came to the realization that "I'll think about that" meant Mom was not going to do anything about it.

Legal decisions made by caregivers

At one point, our family had a discussion without Mom. We were all concerned about the position Mom had taken to make 'no decisions.' Mom has the legal ability to make medical decisions on behalf of Dad.

Someone brought up the idea of legally taking the decision-making away from Mom where Dad was concerned. In order to do that, she would need to be declared, by legal definition, incompetent. Mom was making bad decisions, but Mom was not incompetent. It was discussed amongst the family on more than one occasion. Not only would it have been a waste of time, it likely would have destroyed any relationship we had with Mom. None of us wanted that.

We chose to continue to do the best we could to convince Mom to make better decisions. We had little effect. But at least she knew that no matter what, we were standing by waiting to help in any way we could.

I had a lot of tears during the waiting because I just could not understand Mom's thinking. Yes, I sat in judgment of my Mom and her decisions. Yes, I was angry at her sometimes too. In the end, Mom did what she felt was best for Dad and that gave her some peace.