Dad’s Alzheimer’s & My Mental Health Journey

It’s an understatement to say Alzheimer’s is a difficult disease to live with. It breaks my heart for every person that has to live through this. It also affects me deeply when the family that loves that person has to also live through it. But do we live through it without it affecting our mental health? Not always. It affected mine. I’d say it's fair to say whether in a small way or a big way, it affected all of our mental health...

My mom was burning out

My Dad had Alzheimer’s. I watched as my Mom’s self care took a back seat to all of Dad’s needs. She could not bring herself to allow support services into their home. I think it’s because she struggled to accept that Dad was really not ok. She so desperately wanted Alzheimer’s to not be his journey. Or hers. I think she knew in heart, he was dying a slow death and that terrified her. As it would anyone. We knew mom was not eating well. We knew she wasn't sleeping well either. We did what we could to help but we knew her mental health was affected.

Everything was changing

For me? It affected my mental health as well as my physical health. My goodness, this was MY dad. How could this be happening? Where did this disease come from? We had no family history of it. I knew so very little about Alzheimer’s because I didn’t need to know about it. When I did need to know, I was heartbroken to find out what Dad’s path would be. What I didn’t know was how it would affect me, what my path would be as I walked alongside his journey from afar. It made me heartsick to know I was so far away from where Mom and Dad lived. No it wasn't thousands of miles; it was only a two and a half-hour drive but that drive might as well have been thousands of miles. I couldn’t get to where my parents lived. I had my own family who needed all hands on deck.

My daughter was just starting university when Dad started his journey. She was attending university in the town where Mom and Dad lived. They were so wonderful to want to help get her to her job placements for her course. Cognitively, Dad was declining. Mom was still ignoring the fact that Dad should not have a license to drive. There was one near accident with my daughter in the car. One of the hardest things I ever had to do was to tell my daughter she could no longer accept rides anywhere from grandpa and grandma. The guilt I felt...I can’t put into words.

Caring for my daughter on top of Dad was hard

As Dad progressed well into the later stages, my daughter became quite ill after a minor surgery went bad. My time was spent supporting her and ensuring that she got the care needed. This was the next 18 months of her life and mine. It was 18 months of trying to be available for Mom long distance and not knowing what was really going on two and a half hours away. It was 18 months of knowing my daughter had to come first. Eighteen months of feeling torn but knowing I couldn’t leave my daughter. I was angry at myself that I couldn’t be in two places at once even knowing I had two brothers who were stepping in to help out Mom and Dad.

I was burning out as a caregiver

I’m diabetic and my self-care in that regard was horrible during that time. It’s not uncommon for diabetes to affect your mental health when that alone is your main health challenge. Diabetes requires focus and diligence. I didn’t have the brainpower to do what I was supposed to, to keep my sugars in line. I was hitting sky-high numbers so I just avoided going to the doctor. I didn't need to hear or be scolded for what I couldn’t manage at that time. I did however get up for work and functioned well but when I got home, I was toast.

I felt burnt out. But I couldn't burn out. I had to be there for my daughter who needed me. My husband kept the house running and looked after anything our son needed who was in high school at that time. Our son was at an age where parental supervision was still needed (if you get my drift, LOL). While this was going on Dad was declining. I felt so lost. Try as we might not to, my husband and I found ourselves always talking about what was going on for my Dad and all the difficult things Mom was coping with. We desperately wanted Mom to get help at home but she refused. I felt angry that Mom wouldn’t accept that help and at the same time heart-wrenchingly upset that my daughter was so sick. My emotions went back and forth between anger and sobbing. I don’t think I ever cried so much in my life.

Addressing my mental health

I was truly afraid I wasn’t going to come out of all this in one piece. My mental health was at significant risk. I tried counseling once only to have the counselor kind of shrug off why I was there. Time moved forward, my daughter healed after a second surgery. Dad was still declining but I had come to realize that along with not being able to stop what was happening to him, I couldn’t force Mom to do what she couldn’t either. I had to let go of that. I made peace with myself knowing I would not have any regrets if Dad passed away. I had tried my best.

A year later, Dad passed on. My diabetes self-management got better. My mental health did too. I am not sure how I made it through all of it in one piece but I did.

No matter hard all of this was for me, I’m sure it didn’t compare to what my Mom had to deal with. In case you’re wondering, her mental health is good now too.

How has being a caregiver affected your mental health? Have you gotten support? What advice would you give to other caregivers regarding mental health? Share in the comments below or share your own story.