What if Home isn't Possible?

Updated: Jul 13

I had promised my dad that no matter what, I would do everything in my power to keep him home throughout his journey with Parkinson's and Lewy Body Dementia. That was a promise that I probably shouldn't have made. Knowing what I know now - home just may not be possible. Each situation is so unique and it truly depends on your safety and support network that is in place.

After dad had his hip replacement surgery, we soon learned that he would need to spend a few weeks at a skilled nursing facility (aka nursing home) for his inpatient physical therapy. This was mostly due to his Dementia and adverse drug events he had while in the hospital. I was so worried that Dad thought I was giving up on him. I tried to make sure that he knew that this was only a pitstop on the way home.

So often we are faced with this very difficult decision - choosing home or facility care. Sometimes we don't have a choice.

When I set out to select the facility where dad could get his therapy - I had less than 24 hours to do it. I thought I had checked all the boxes. I chose the facility that was most convenient to us, had private rooms, even a suite with a mini-fridge and pull-out sofa that my mom could use while she stayed with him. This was before COVID. The facility was gorgeous, new and top notch in everything that didn't matter.

It came with huge issues. Medication was never administered on time which greatly impacted my dad's ability to rehabilitate. Even with us staying with him 24x7 while he was there, we found so much neglect, not just for my dad, but throughout the facility. I couldn't imagine what life was like for those that didn't have advocates. Also, meals were sporadic and horrible. I can't help but wonder what it would have been like if we weren't plugged into dad's therapy and care.

This entire experience truly opened my eyes to the staffing issues and lack of staff engagement that is happening right now, a true crisis in my opinion. So often, even when we choose what we think are the best facilities, we soon learn that we need to still be available or hire someone to be with our loved ones to ensure the facility is just doing their basic job.

It's important to know what questions to ask when shopping for facility care. In Chapter 5 of my book, Sunsets and Silver Linings, I explore:

  • The Failing System of Nursing Home Care in the United States

  • How to Report Nursing Home Abuse

  • Why Nursing Homes are so Vulnerable to COVID

  • Tips for Discerning What is Right for You and Your Loved One

It's a scenario we never want to face. But my hope is that if this is your path, I can give you some things to look out for so that your loved one is in the best possible care under these circumstances.

After six weeks, we were able to move my dad back home where he remained. I am so thankful that we had the opportunity to do that. It took grit and grace, a lot of hard work - but in the end, it was much less stressful than the constant facility battles we experienced while in rehab.

The most important thing to remember is SAFETY. Is your loved one safe? Are you safe? Do you have the proper support you need at home? While we want to make promises, we may need to give ourselves grace to make those hard decisions for what is truly in the best interest of everyone so that your loved one receives the best care.

It really becomes about choosing which battles we want to fight.

You can learn more about my dad's specific journey with inpatient rehabilitation in Chapter 5 of my book, Sunsets and Silver Linings.

The link for purchasing your copy of the book is below.

A Note from the Author: While this book is available on Amazon and Barnes and Noble in hardback, paperback and e-reader formats, I encourage you to make your purchase from the link above from my publisher, Xulon Press. Amazon and Barnes and Noble both take more than 60% of the proceeds from the sale of any book. By purchasing directly from the publisher for the same price, you are able to help others more with PD and LBD with a higher contribution from royalties. I'm sure many other authors would also appreciate this approach as well.

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