Ups and Downs of Being a Family Caregiver in the Home

This is my personal journey of being the sole caregiver for my parents in their home. If you are in a similar situation, please seek out help. It is too much for one person to handle alone.

My journey  Care home  Self care

My Journey as the Sole Caregiver in the Home

It all began at about 2008 for me. My Dad was diagnosed with the early stages of Alzheimer's. He was still high functioning and independent, but was having difficulty with his banking affairs. I started to notice signs of memory loss more and more. He was put on two types of medication that the neurologist said would help keep symptoms at bay.

Fast forward to Dad was having difficulty in his driving, scared me to death when I rode with him, so I requested to his doctor to have his license taken away through the DMV. Then I noticed things in the home that were becoming unsafe. There was a floor cleaner in the fridge, purple in color. Dad couldn't open it, thank goodness! I found tile chalking on the shelf in bathroom, he thought it was toothpaste.

I lived eight miles away, so began driving over every evening. I'd fix my parents dinner and prep them a lunch for the next day. I figured they could use the microwave to warm up the leftovers or soup. Then they began burning the food up in the microwave because instead of three minutes they'd hit 30 minutes. They no longer knew how to use the TV remote, microwave, washer, dryer, or stove.

I then decided it was time I moved in. This was February 2015. I figured, no big deal. I'd care for them because I had made a pact with them years ago that I wouldn't put them into a nursing care home. As time went on, I began to feel overwhelmed. But did I ask for help? Nope...I just kept it to myself.

Then my mom was diagnosed with Alzheimer's in 2016. She had more of a drastic loss of memory, short term and long term. I thought to myself, can I deal with both of them like this? Sure I could and I would! I have family that live in the same town but they all worked full time so I didn't bother them. In 2017, my Dad was needing full time assistance to dress, shower, shave and guidance to the toilet.

In 2018, my Dad made a drastic turn. He could no longer stand or walk, he was leaning hard to the right, and he couldn't talk. I called the paramedics and off he went to the emergency room (ER). After eight hours, they transferred him to a bigger hospital. No sign of a stroke so they decided to "observe" him in the hospital.

I have since found out that if they admit them under observation, then they are considered to be on outpatient status, even though they may stay several days. This wasn't explained to me. If they are sent to a skilled nursing care center, YOU will be stuck with the bill, because the hospital admitted them under observation. Medicare requires a three day hospital stay before they will help cover rehabilitative care. So be sure to ask the status of the admission!

I stayed in my dads room and there was hardly any care by the nurses. He was having swallowing issues so I asked for a swallow study. The tech said yes, he needs soft foods. No one was there to offer to help feed him. They would bring his tray and leave. He could no longer move his feeding utensils to his mouth. So I had to feed him.

They sent in a Physical therapist to work on getting him up and walking. Umm...could they not tell he was never going to walk again? He was now bedridden!

After 4 days of this kind of care, I asked his doctor If he could go home under hospice care. The doctor said yes...So by the time we got home, things were set up, hospital bed, etc.  It was an emotional toll on me to see him so frail. I slept on a mattress on the floor next to his hospital bed. He just laid in his bed but would eat the food I offered him.

Nine days later in July of 2018, he just went to sleep peacefully. It was a hard journey with him, but I wouldn't trade it. I felt so alone caring for him while other family was out having fun, going on vacations, etc. But I choose to care for him until the end, in their home. I am still caring for my Mom who is 93 to this day!

When Your Loved One Can't Afford a Care Home

When your loved ones can't afford a care home or to hire respite care, you have to make the choice of caring for them. I sought help through Senior Services and was told they would need to separate, so that they'd each have their own income levels. Then they would be eligible for state medicaid.

But because they owned their home, the state would put a lean on it after they both passed. The state would take any monies that they paid out in caring for them, from the estate. If they paid for me or anyone to care for them, that would also come out of estate.

So the other option was no pay! I've given my life with no pay caring for them since 2015. Which also means that my social security isn't being paid into and I'm pushing 60. This has got to change for us caregivers! 

The Lack of Self Care

Self care is another huge issue. Who has time to think about themselves? You're wrapped up 24/7. I already had diabetes, but under control with medications, as well as fibromyalgia. I also have had three back surgeries and the last one they placed a rod and four screws in my lower back. I struggled every day with my back, especially having to lift my parents when they'd fall.

This year I decided I needed to care more for myself because I was having more issues. Come to find out, my diabetes is back with a vengeance and has caused me to have Polyneuropathy, affecting my nerves. I have uncontrolled high blood pressure as well as social anxiety and depression. This is due to me not seeking help by friends or relatives and seeking "me" time for self care.

We are all human and NOT super humans! Please ask for help or find ways to get respite care if possible. I have so many friends in the same situation. The toll it takes on us mentally is truly awful. We feel everyone! There has to be a solution out there somewhere.

Thank you Gayle Yarbrough for contributing this article.

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