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In the blink of an eye, life changed drastically, and I became a caregiver. In hindsight, I wish someone had told me useful things that would have made my role just a bit easier. Here’s what I learned about being a caregiver and what I want to share with you.

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8 THINGS NO ONE TOLD ME ABOUT BEING A CAREGIVER

One day, she was an independent, fun-filled person, 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, my mother was diagnosed with Lewy Body Dementia -the worst kind.

In that instant, I became my mother’s full-time caregiver. A role I would never regret but came without a manual.

When you’re in the throes of caregiving, you learn to put one foot in front of the other and keep moving forward. If you stop, even for a moment, and lament how difficult the role can be, it can destroy you and your ability to do what needs to be done. However, there are some useful tips about being a caregiver which can make all the difference.

YOU’LL BE FACED WITH DIFFICULT DECISIONS AS A CAREGIVER

I knew that full-time caregiving would present many difficult decisions. Early on, it became apparent that I would be forced into a position whereby I would be required to make all her decisions for her.

As a result, I needed to become her legal guardian. This was both a blessing and a curse. Fortunately, my mom had a will, advance directive, and power of attorney 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 compromised mind, I always 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 if I was doing the right thing.

On the other hand, I felt it was a curse because I had this added layer of responsibility to fill out reports and answer to the courts who oversaw guardianship and conservatorship in the state I was living in. Honestly, although I understood why this was necessary, I found it intrusive and frustrating.

Ultimately, it didn’t change how I made decisions for her; it just made it more complicated.

CAREGIVING IS NOT LIKE HAVING ANOTHER CHILD

Many people mistakenly believe being a caretaker to an elderly person is like 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 countless doctors; they need endless appointments to be made and in-home help to be coordinated.

In addition, they may be resistant to doing 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 often made her way to the top of the step stool. I finally had to remove all step ladders from the house.

It can be tricky to balance the assistance your loved one needs without infantilizing them. Remembering how you would want to be treated if you were in a similar situation is always a good reminder as you navigate your caregiving responsibilities.

YOUR RELATIONSHIPS WILL BE STRAINED

My relationship with my mother was always a work in progress. We didn’t get along very well when I was a kid. After my father died, we both worked on creating a better relationship. It was always three steps forward and a step or two back, but we constantly improved.

From the outside looking in, no one would have known that we didn’t get along in the past. At times, I felt resentment toward my mother for this burden placed upon me. I would get short with her or just be frustrated at what she could no longer do. I’m not proud of those moments, but I’m only human, and they happen to almost every caregiver I’ve ever spoken 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 could offer.

The other caregivers who helped me with 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 it.

Friends tried to be supportive, but many couldn’t relate, bringing me to my next point.

YOU WILL 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 leads to feelings of extreme isolation and 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 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.

FIND A WAY TO GO TO A CAREGIVER 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 life is being sucked right out of you. Ultimately, 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, 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 maintain your spiritual life.

Your Key To Senior Living Options has an established caregiver support group that meets monthly. Call Josephine, the group’s facilitator, at 352-766-1050 to join. It’s an open, ongoing group, and we always welcome new members.

CAREGIVING WILL DRAIN YOU FINANCIALLY

Caregiving can be stressful for a family, especially for women. Statistics show that 25% of baby boomers today are caring for an aging parent, the majority are women, and the primary caregiver in the U.S. today is most frequently the first-born daughter.

Adjusting your career for caregiving can mean lower wages, lost income, and missing out on career opportunities or promotions.

If you take two years off from your $100,000 per year job to care for Mom, then the result is that you’re losing more than $200,000. You’re losing the ability to save in your company retirement plan (401(k)) along with any employer matching contributions, and you are potentially cutting into your future Social Security retirement benefits (as you’ll have few earning years on your record).

Leaving a job also has further implications, so before going this route, it’s important to see if you can work an arrangement out with human resources first. You may be able to cut back to a point where you can still keep your health insurance, health savings account (HSA) or retirement plan benefits (including catch-up contributions if you are over 50) in place.

If you have no choice but to give up your job to become a full-time caregiver, remind your family of the financial impact. All children generally feel obligated to help; however, daughters tend to take care of the physical caregiving more often. Being more hands-on means that, in addition to lost wages, career choices, and retirement savings, female caregivers are more likely to notice missing items and will pay for these items out of pocket, which exacerbates the financial impact of caregiving.

Having a healthy emergency fund in place will help you if you find yourself out of work and must now take on the role of caregiver.

IT CAN BE EMBARRASSING AND UNCOMFORTABLE

I can’t tell you how many times my mother would strip naked. This woman who never would have dressed immodestly was now stripping down to her birthday suit regularly. 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 in such a position.

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 their lack of control over bodily functions, will keep your cheeks red.

YOU WILL NEED A BREAK AS A CAREGIVER

Being a full-time caregiver is challenging and stressful, especially when adding kids, work, and the rest of life’s demands. 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.

If your family qualifies for respite services, take advantage of them. Not only will it benefit you, but it will also benefit the person with dementia.

We can help you find the right respite placement for your loved one. They are not all the same, and depending on the level of care and medical complexity of your loved one and their particular needs, which respite facility can accept them. But you don’t have to worry about that.

Call us at 352-766-1050, and we can guide you to the right placement. All of our services are free to seniors and families.

IT WILL BE FILLED WITH JOY

Looking back, I realize so many moments 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 joyful things in the caregiving process, but believe me, when I tell you in hindsight, you’ll find many. Hopefully, you’ll be able to appreciate them at the moment, but even if you can’t, you will in time, and they will help you as you grieve the loss of your loved one.

CONCLUSION

Five years 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 would like to share some small tidbits with you so that if you ever find yourself in the role of caregiver, you know you are not alone.

ABOUT BEING A CAREGIVER