In the blink of an eye, life changed drastically and I became a caregiver. In hindsight, I wish someone had told me the useful things that would have made my role as a caregiver just a bit easier. Here’s what I learned about being a caregiver and what I want to share with you.
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 worse 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 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. But some useful tips about being a caregiver 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 was going to be forced into a position whereby I would be required to make all her decisions for her.
As a result, it became necessary for me to become her legal guardian. This was both a blessing and a curse. I was fortunate 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 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 our reports and to answer to the courts who oversaw guardian and conservatorship in the state I was living in. Honestly, although I understood why this was necessary I found it intrusive and frustrating.
In the end, it didn’t change how I made decisions for her, it just made it more complicated.
CAREGIVING IS NOT LIKE HAVING ANOTHER CHILD
Lots of 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.
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.
Learning to balance the assistance your loved one needs without infantilizing them can be tricky. Keeping in mind 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. 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 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 was capable of offering.
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 just couldn’t relate which brings 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 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.
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. 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.
Your Key To Senior Living Options has an established caregiver support group that meets twice a month. Call Josephine, the group’s facilitator at 352-973-2729 to join. It’s an open ongoing group and we are always welcoming new members.
CAREGIVING WILL DRAIN YOU FINANCIALLY
Caregiving can place a toll on a family, especially women. Statistics show that 25% of baby boomers today are caring for an aging parent, the majority are women, and most frequently the primary caregiver in the U.S. today is the first-born daughter.
Adjusting your career for the purpose of 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 has further implications as well, 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 years old) in place.
If you have no choice but to give up your job to become a full-time caregiver, then 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 and 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.
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.
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 never 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 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 the lack of control over bodily functions will be the two things that will keep your cheeks red.
YOU WILL NEED A BREAK AS A CAREGIVER
Being a full-time caregiver is challenging and stressful, especially when you add kids, work, 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.
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 determines which respite facility can accept them. But you don’t have to worry about that.
Give us a call at 352-973-2729 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 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 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 to share with you some small tidbits so that if you ever find yourself in the role of caregiver you know you are not alone.
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