In the blink of an eye, life changed drastically.
One day she was this independent, fun filled woman and the next she was debilitated and disabled, left confused by the assault on her brain by a massive brain hemorrhage.
It was all downhill from there.
Within six months she was diagnosed with Lewy Body Dementia. The worse kind of dementia.
In that instant, I became my mother’s full-time caregiver. A role I would never regret but came with many realities no one ever told me about.
When you’re in the throws of caregiving, you learn to put one foot in front of the other and to keep moving forward. If you stop, even for a moment and lament on how difficult the role can be, it can destroy you and your ability to do what needs to be done.
With that being said, I wish in hindsight someone; anyone had told me the things, useful things that would have made my role as caregiver just a bit easier.
8 Things No One Ever Told Me About Being A Caregiver
You’ll Be Faced With Difficult Decisions
I knew caring for my mother full time would bring about many difficult decisions. With my mom and her cognitive difficulties, it became apparent early on I was going to have to make all of her decisions for her.
In the end, I became her legal guardian so that I could make all the decisions I needed to make without interference from any outside forces or relatives trying to dictate something my mother wouldn’t have wanted.
Luckily for me, my mom had a will, advance directive and power of attorney in place before she got sick. We had the “difficult” conversation and had thoroughly discussed end of life issues. I knew how far my mother would want me to go to keep her alive and how far she wouldn’t. Even with her mind so compromised I always felt I knew what she wanted me to do.
But, it didn’t make it any easier. Every decision large or small came with consequences and ramifications, and I constantly struggled with knowing I was doing the right thing.
Being A Caregiver To An Elderly Person Is Nothing Like Having Another Child
Lots of folks mistakenly believe being a caretaker to an elderly person is like a having another child. Nothing could be further from the truth.
An adult person has already formed opinions and routines. They can have adult conversations and as such want to be engaged. Neglecting them as if they don’t know what’s going on or have thoughts or feelings they want to express would be insulting and frustrating for them.
They require care but an entirely different kind of care than a child. They need medications to be managed and consultations with a slew of doctors, they need endless appointments to be made and in home help to coordinate.
On top of that, they may be resistant to do the things that are in their best interest like refraining from driving. My mother and I had one ongoing fight for years. She insisted on getting on top of step ladders and into the attic. Despite my insistence, she would often make her way on top of the step stool. I finally had to remove all step ladders from the house.
All Your Relationships Will Be Strained
My relationship with my mother was always a work in progress. As I’ve written about before, we didn’t get along very well when I was a kid. We had both worked on creating a better relationship after my father died. It was always three steps forward and a step or two back but constantly moving forward.
From the outside looking in, no one would have been able to know that we didn’t get along in the past. At times I felt resentment towards my mother for this burden that had been placed upon me. I would get short with her or just be frustrated at what she was no longer able to do. I’m not proud of those moments but I’m only human, and they happen to almost every caregiver I’ve ever talked with.
I struggled with my sister’s lack of involvement, but she had distanced herself so many years earlier that I tried to be realistic about what she was capable of offering.
The other folks who cared for my mother did from time to time bear the brunt of my stress. Amazingly enough, because of their training, they understood what I was dealing with and encouraged me to find a way to deal with the stress.
Friends tried to be supportive, but many just couldn’t relate which brings me to my next point.
You’ll Feel Isolated
Caregiving can be an incredibly isolating experience. At times I felt like a prisoner in my home unable to leave when I wanted. This lead to feelings of extreme isolation and sometimes loneliness.
When you go on Facebook and see your friends doing things without you, or you can’t attend a party or event because you don’t have anyone to help out and watch your loved one, it can get pretty depressing.
In hindsight, I wish I had reached out more to friends and family for support and socialization.
Go To A Support Group
Caregiving is a thankless job with serious emotional and spiritual side effects. If I could do it over again, I would have joined a support group and found the help necessary to attend church regularly.
Caregiving can feel like the life is being sucked right out of you. In the end, you’re an empty shell going through the motions just doing your best to keep your loved one safe and comfortable. In hindsight, a support group would have helped me deal with these effects and showed me better ways to deal with my caregiving role. Not taking the time to attend Church each week was a serious mistake on my part as I could feel my spiritual life shrinking as each day passed.
If you find yourself in a caregiver role, take the time you need to join a support group and keep your spiritual life going.
It Will Kill You Financially
When my mother first got sick, I was operating a thriving coaching practice that was pulling in over 100K a year and was managing the cleaning business. All that came to a screeching halt the day she got sick. I never worked again until almost eight months had passed.
What do you think happened? The coaching practice failed.
If you’re self-employed, you’ll more than likely take a bigger financial hit than someone who works full time. However, I know lots of people who have to quit their jobs to become full-time caregivers.
Making sure you have a healthy emergency fund in place will help you if you find yourself out of work because you must now take on the role of caregiver.
Caregiving Can Be Embarrassing and Uncomfortable
I can’t tell you how many times my mother would strip naked. This once modest Christian woman who never would have dressed immodestly was now stripping down to her birthday suit on a regular basis. She would do it at home, at daycare and always in the hospital and when you would bring this to her attention and redress her she would always be just as surprised to find herself butt naked.
Reading this now I can laugh, but at the moment, with people staring and nurses telling you to get her dressed pronto, it would be embarrassing and uncomfortable.
Their behaviors coupled with the lack of control over bodily functions will be the two things that will keep your cheeks red.
You’ll Need A Break
Being a full-time caregiver is at times challenging and stressful, especially when you add kids and the rest of life’s demands into the mix. In all the years I cared for my mother, no one ever told me my mother was eligible to go to respite services. If they had, I would have sent her. Instead, I suffered alone, exhausted, overwhelmed and isolated by my responsibilities.
Take advantage of respite if your family qualifies for those services. Not only will it benefit you, but it will benefit the person with dementia too.
It Will Be Filled With Joy
Looking back there are so many moments that filled my heart with joy. The Friday before my mother lapsed into a coma she recognized me for a brief moment. It was so wonderful to know that she could have glimpses of reality even despite how badly the disease had affected her.
You might not realize all the things that are joyful in the process of caregiving, but believe me, when I tell you in hindsight you’ll find many. Hopefully, you’ll be able to appreciate them in the moment.
Three months have passed since my mother’s passing. I can look back and see all the things that didn’t go as planned and things I wish I had done differently. I’m grateful for the experience and to share with you some small tidbits so that if you ever find yourself in the role of caregiver you know ahead of time how best to prepare.