Caregiver/Advocate

Taking on the role of caregiving requires wearing many different hats.

First, and foremost, you want to make sure your loved one is safe at all times whether its in their home or your home, a memory care facility or a skilled nursing facility. We want the best for our loved ones.

Second, we want to be able to have complete trust in any outside help such as sitters, home healthcare staff, certified nursing assistants, nurses and, yes, even doctors.

If your loved one is in hospice care whether it’s palliative or hospice there is usually an appointed person as their advocate. If they are solely in your care, you become their advocate. . .for everything.

I learned about being an advocate early-on with my Mother. From the time of becoming her Durable Power of Attorney to the time of hiring sitters 24/7.

Throughout the process of my caregiving I was constantly advocating for what was best and right for my Mother. I’ll admit, it’s not an easy task caregiving or advocating. Having to do both simultaneously can be draining and daunting. All I can recommend is to do your homework and talk to those in the healthcare field. Don’t hesitate to ask questions (nothing is too insignificant) of everyone, including the doctor in charge. Just because someone has the title of “doctor” or “nurse” doesn’t mean you can’t ask questions. This is your loved one you’re caring and advocating for. And PLEASE do not ever think your questions are stupid. There ARE NO stupid questions.

I understand that some people are not of the nature to buck the system so they do whatever they’re told. However, there are exceptions where a suggestion might not be in the best interest of your loved one. After all, who knows them as well as you do? So speak up and give your views and opinions.

A good example I have to share is a time when my mother’s agitation was escalating and her doctor kept adding medications to her regime all the while trying to impress upon me how “just a small dose” would take the edge off. I was trusting this doctor because, well, she was the doctor!  I was adamant I didn’t want her over-medicated and the doctor assured me that would not happen. But, in fact, it did happen. She had to be admitted to a psyche ward to ween her off all medications and start fresh with what she really needed without having numerous drugs to settle her down. I can’t tell you the guilt I felt because I was her advocate, how did I let this happen?

There it is, that word guilt! No escaping that little culprit of a word when you’re a caregiver/advocate.

I trusted the doctor, but what I didn’t do was put my foot down and say “no more”. Even the psychriatrist was astounded by the number of drugs she was on just for agitation. After one week in the psyche ward, my mother was more alert and smiling and being herself. The medications changed her personality and made her more irritable rather than calm.

What I’m saying to all Caregivers/Advocates is be on your toes at all times. Ask “why” something is recommended or prescribed. Read up on side effects especially if a person has any kind of dementia. Some medications for agitation are not recommended for dementia patients and can cause serious problems, even death.

The other point I want to make here is never let a healthcare professional dismiss your concerns about your loved one because of “old age”. I can’t tell you how many times I heard that from various healthcare professionals. We’re all going to age, but that doesn’t mean to write off the elderly because they consider the health problem to being age related. There are many avenues to take in helping our aging population whether they have dementia or some other health problems. Step up and have the courage it takes to be the caregiver/advocate your loved one is counting on.

 

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Becoming A Statistic

When life throws surprises your way you never really think about what exactly that might turn out to be. In my case it was becoming a Caregiver.

There are plenty of caregivers out there. Some are caregivers of special needs people. Then we have caregivers of disabled people from military personnel to those who were born disabled. You even have caregivers of churches, volunteers of disaster relief and the list goes on.

In my particular life, I was the main caregiver to a mother with dementia; first diagnosed as Alzheimer’s disease. I had no idea what the future would hold in that specific category.

Never in a million years did I ever believe I would have a parent with any kind of dementia. After all, that happens in other families not mine, right?

How do we even come to that conclusion? Do we think our genes are better than someone elses’ and we’re special? What right does anyone have to think that way? God says we are all created equal. It doesn’t matter what color you are or even what ethnicity you might be. We are all created equal. Period.

So why did this happen in my family? I asked that question myself. In time I will learn the answer to that.

I researched Alzheimer’s disease and dementia and it was astounding. According to the Alzheimer’s Association reports, the population in the U.S. age 65 and older continues to increase. Yes, people are living much longer today. By 2025 the number of people 65 and older with Alzheimer’s is estimated to reach 7.1 million people. That’s a 40% increase in 2015. By 2050 the number of people 65 and older with Alzheimer’s may nearly triple to a projected 13.8 million, barring the development of medical breakthroughs to prevent or cure the disease.

Over half of primary caregivers of people with dementia take care of parents. These are real statistics and I became one of those statistics.

Becoming a statistic as a caregiver has proven to have some positive outcome for me. Sharing and helping other caregivers find their way in this unexpected role just might become my new focus and part of a new purpose.

If you’ve become a statistic and have had similar thoughts to mine, feel free to comment or ask questions. Caregivers all over need to share so they don’t feel isolated and alone.

Beginning Life Again In My Sixties

Never in my wildest imagination would I have ever thought I would be starting life over in my sixties. Yet, here I am doing just that.

What happened? Life. Marriage. Divorce. Raising kids. Becoming a caregiver to my mother with dementia for nineteen years.

Lot’s of changes and even though it sounds a little daunting it wasn’t always so glum. I learned a lot along the way with many challenges thrown into the mix. I’m not bitter or resentful about any of this. However, I had no idea this is how my life would pan out in my sixties.

You might be thinking, “sixty” is kind of up there in age. Honestly, I’m a very young sixty, if I do say so myself. I’m in great health and I take no medications whatsoever. I consider myself fortunate to have learned early on how important it is to take care of yourself and stay healthy. I enjoy outdoor activities from hiking to camping (tent not RV) to spinning around on a dance floor. I like to think of myself as being young at heart as well.

My life from 2001-2013 was spent in the beautiful Blue Ridge mountains of North Carolina. I moved there for a job opportunity in hospitality; a resort spa to be exact. For me, it was an opportunity of a lifetime one I couldn’t pass up. I learned a lot in those twelve years about customer service, hospitality, leadership and so much more. I wouldn’t trade those years for anything.

Before moving to North Carolina is when I started the role as caregiver for my mother. She was widowed and living alone when she was diagnosed with dementia. She was first told it was Alzheimer’s disease; later on we discovered she had multiple dementias. Who knew that was possible? I, for one, did not. The journey began in 1993 and ended nineteen years later.

I had no idea what it meant to be a caregiver let alone a caregiver for somone with dementia. Where does someone go to learn this role? There wasn’t anywhere that I knew of at the time. For me it was more like “on the job training” and doing a lot of research on the subject of dementia. The Alzheimer’s Association is a plethora of information. If you dig deep enough you find there are many resources to get help.

Finding the resources and putting them to good use is another situation. I mean, I’ve never been one to ask others for help, although I enjoy helping others. I didn’t want to burden other people with my problems. How foolish that was. The resources are there for that very reason. To help. To provide information. To provide a listening ear. To guide you in the right direction.

After moving my mother to North Carolina with me, I found I really needed those resources more than ever. Moving to another state not knowing a soul there, I had to fall back on those resources to help me understand the stages involved in dealing with someone with dementia.

Being involved with other family members going through the same thing as I was proved to be the most helpful resource of all. Everyone could truly identify what I was going through and experiencing.

The connection I had with these family members turned out to be some of the closest and dearest friendships I could have ever thought about having. This is where I learned a valuable lesson: It’s okay to lean on someone else.