If it weren’t for family caregivers, our health care system would implode. There would be a huge need for nursing home or assisted living beds that no community could fill. Currently, there are not enough saints who are willing to do physically and emotionally exhausting work for minimum wage. No one disputes that caregivers, family or professional, need a ton of support.

As beds in nursing/assisted facilities fill, the backup of patients in hospitals waiting for admissions paralyzes the health care system. Without sufficient staff, nursing facilities must eliminate available beds for admissions. And so hospitals, filled with patients awaiting placement, do not have enough beds for the acutely ill.

Often caregivers must go from full to part time employment, or quit altogether, to care for their loved ones. So aside from the physical tolls, caregivers pay financial tolls as well.

Caregivers are at risk for everything from high blood pressure to heart attacks, to failing to keep up with their routine care. I know my excuse for avoiding a knee replacement was, “who will take care of Gene?”

Emotionally, caregivers waver from glad they can care for their loved ones, to resentment, fatigue, insomnia, anger, and guilt over their anger. Many are prisoners in their own homes without respite care.  The outlook for them and their loved one is often grim. Isolation and depression threaten both the caregiver and the care receiver.

They have questions and finding answers is not easy, despite the internet. People’s situations are nuanced so internet advice is not a “one size fits all.” They want to know the latest information about health issues, treatment options, side effects of medications, and how to access home care.

I will tell you, despite having experience (albeit 15 years ago) in Monroe County’s home care system, I encountered roadblocks when advocating for my husband. Frankly I think it ran better years ago. At the same time, changes flow from the monetary aspect of health care. The adage “just follow the money” remains true.

I have tons of respect for the members of GRAPE (Greater Rochester Arear Partnership for the Elderly). Company representatives, managers, and owners join together to help each other navigate this complex system for their clients. Yet they can control only so much.  GRAPE even has a committee devoted to following state and local funding for programs. They track state and federal regulations as they advocate for the elderly.

What do you need to know?

So you can see, the topic of caregiving is huge. Now that we are two months into 2022, I need your help to continue to offer meaningful blogs for caregivers. (No, I don’t want money.)

I need to know what you want me to feature in this year’s upcoming blogs. Most of the time, GRAPE members and their work inspire me to write about what they are doing and what they have to offer. Other times I ponder about what topic would interest you or provide you with the information you need. Even if you do not live in Monroe County, caregiving issues are the same across the America.

If you contact me privately through the CONTACT link on my website, or post your questions to share with others, please know I really want your input. If I don’t know the answer, I will find it!

You may have read this and thought, well everything I described is helpful. But what would be  most helpful for YOU? Are you dealing with dementia and need more information about managing its challenges for you and your loved one? Are you thinking it is time to plan ahead and wonder where to start? Do you need to share what you’re going through with others? There are caregiver groups online. For example, I joined Caregivers Hub Support group on Facebook. It’s a non-judgmental place to find love, understanding, encouragement, and answers.

https://www.facebook.com/groups/1086643188075881/?hoisted_section_header_type=recently_seen&multi_permalinks=7092413560832117

Having been a caregiver and nurse for years, I learned caregivers are at such mental and physical health risk, that I believe caregiving should be considered a diagnosis. Caregivers should be helped as we would help a cancer patient or diabetic. Unfortunately, it is not listed as a disease, does not have a diagnostic code number to trigger insurance payment, and so we suffer and struggle on our own as best we can. Sympathetic words and acknowledgements are not enough. We need case management, physicians who partner with us as caregivers, access to home care without emptying family bank accounts, and more well paid caregivers in facilities and homes.

Fortunately, Governor Hochul’s agenda this year addresses many of these concerns. I believe we will move forward because we must. Unfortunately, progress proceeds at a snail’s pace partly because the system is huge, and money remains king.

So please join the conversation and I will do all I can to address your concerns and interests. I just have to know what they are.