Thursday, March 31, 2022

Taking Care of Yourself

One of the hardest things I had to do as a caregiver was finding time to take care of myself. I took Jim to so many doctor visits that I just couldn’t face any additional ones. Then, later, caregiving consumed most of my free time. The bad thing about this scenario is that eventually neglecting my own health caught up with me.

It is easy to tell a caregiver, “You have to take care of yourself,” but it is hard to put those good words into action. Knowing what we should do doesn’t always mean that we will do it. Personal health doesn’t always make it to the top of the caregiver priority list.


I recently downloaded a copy of the 2022 Alzheimer’s Disease Facts and Figures and came across a section on caregiver health. So many of the statistics reminded me of how mentally and physically exhausting caregiving can be. The stress of caregiving increases the chances of health complications. Seventy-five percent of caregivers reported they were concerned that they were not adequately maintaining their own health. 


According to the report, caregivers of a person with dementia lose between 2.4 hours and 3.5 hours of sleep a week. Well, I think I lost more than that much sleep each night! Jim didn’t seem to need more than four hours a sleep, and that meant that I didn’t get much more sleep than he did. He wandered around the house and sometimes out the door. After having to drive the road at night to find him, I put an alarm on the door so that he couldn’t go outside without me knowing it.


Stress and burnout are the nemesis of a caregiver. It is important to have some time away from the responsibilities of caregiving, or respite. I was working when I cared for Jim and I really needed that time away, although leaving him in someone else’s care was a different kind of stress. Fortunately, I worked close to home and could make the trip in less than twenty minutes.


Caregiving is a challenge, but family and friends can be lifesavers. We were blessed that Jim and I both came from large families who were there for both of us. Jim enjoyed being around someone besides me, and when I was stressed and tired, I can understand why. Our sons and daughters-in-law were frontline warriors that were only a phone call away.


A difficult situation for a caregiver is knowing when to say “when.” With family help and professional caregivers, I kept Jim at home as long as I could. Relinquishing most of Jim’s care to others was heart wrenching. When I placed Jim in a nursing home, I was still a hands-on caregiver because no matter how much dementia changed him, he was still Jim. For my own peace of mind, I needed the assurance that he received the best care possible.    


Being a caregiver can be fulfilling when it is a labor of love. When you know that you are doing your best to keep your loved one safe, happy, and comfortable, you will sleep better at night—even if it is for four hours.


Copyright © March 2022 by L.S. Fisher


Monday, March 28, 2022

Memory Week—State Advocacy


Earlier this month, I participated in the Alzheimer’s Association Greater Missouri Chapter Memory Week. For the second year, we met virtually. Between March 7 and 10, I attended webinars, participated in Zoom programs, and  joined a virtual meeting with Senator Lauren Arthur.

I sent emails to my state legislative officials, Representative Kurtis Gregory and Senator Sandy Crawford about our three legislative priorities:

 1.  Fund Alzheimer’s Grants for Respite. House Bill 3010 will maintain $450,000 to fund respite support or care related products for families caring for a loved one with Alzheimer’s at home. I was one of the 99% of people who was able to keep my loved one at home longer with respite care.  

2.      Continued Funding for the Structured Family Caregiver Waiver. The Structured Family Caregiver Act was signed into law in 2019 with an initial cap of 300 participants. This agency-directed model helps families navigate the  comprehensive and cost effective choices they have to make for persons with dementia. The waiver was approved in February 2020 and funding for this program is included in House Bill 3010.

3.      Missouri Alzheimer’s State Plan Taskforce. In 2021, the Missouri General Assembly re-established the Missouri Alzheimer’s State Plan Taskforce. The Taskforce assesses all state programs that affect people with Alzheimer’s or a related dementia. They update and maintain an integrated state plan to overcome Alzheimer’s. We are asking for an additional five months for the taskforce to produce its initial report to the Governor and General Assembly.


None of these programs are high dollar budget items, but can save the state billions in Medicaid  costs for expensive nursing home placement. Family caregivers in Missouri provide free in-home care for their loved ones valued at $4.3 billion.


Considering that Alzheimer’s is the most expensive disease in America, I hope Missouri will approve our asks to provide respite funds for caregivers who take on the responsibility of caring for a loved one. We need to care for the caregivers! The Structured Family Caregiver Act and the Alzheimer’s State Taskforce will put our state on the right track to provide services necessary for the 120,000 Missourians with Alzheimer’s and their families. These programs are designed to protect caregivers from emotional distress and financial ruin while keeping loved ones with dementia at home as long as possible.


During Memory Week, Secretary of State Jay Ashcroft addressed the advocates. He talked about his personal connection to Alzheimer’s disease. His maternal grandfather had Alzheimer’s and his maternal grandmother was his primary caregiver. He spoke about the Secretary of State Vulnerable Citizens Services Unit. Older adults are often the target of scams. Affinity fraud is especially insidious. Someone will infiltrate a church, temple, or civic organization with the sole purpose of selling fraudulent investments. Avoiding fraud is as simple as ABC: Ask questions, Be cautious, and Call the SOS office. The hotline to report scams is (855) 653-7300.


Please be vigilant of loved ones with dementia when it comes to scams, and be fearless when it comes to taking action to stop anyone from taking advantage of them.


Copyright © March 2022 by L.S. Fisher


Monday, March 14, 2022

Step by Step


A few days ago, I heard the old song “Step by Step” by the Crests. The darn song keeps running through my mind day and night since then. I don’t know all the lyrics but the step by step part of the song is like a broken record.

 It could be that the phrase reminded me of how things have been for me lately. It seems that some days are handled best one step at a time. My first step is to have a cup of coffee. Then, after I have time to drink it, preferably in silence, I’m ready to face the day.


Retirement has caused total chaos in my mind as far as the day of the week and the day of the month. Occasionally, I don’t notice when one month turns into another, but that is a by-product of not knowing what day it is. Thank goodness, I have electronic devices that make that job a lot easier. If it weren’t for my cell phone alarms, I would miss more appointments than I do.


On Saturday I had a moment of panic thinking that I had missed my Tuesday dental appointment. Not only are they hard to get, but the last notice I received reminded me of extra fees for being late or missing an appointment.


The previous confession reminds me of the wonderful program that my friend Amelia presented on Ten Signs and Symptoms of Alzheimer’s during Memory Week. I don’t have to look beyond Sign #1 Memory Loss to find the symptom of relying heavily on memory aids. Okay, I know that in today’s busy world, almost all of us count on the bells and whistles of our devices to keep us on track.


Once you’ve been a caregiver to a person with dementia, you realize how extensive and debilitating that memory loss can be. When the clinic tried to evaluate Jim, they asked him if he knew what month it was, and he replied, “Yes.” I’m sure he thought they should just take his word for it. In all fairness, I think Jim sometimes did know the answer to their questions, but his aphasia made it hard to him to find the right words. Or he may have thought they were just stupid to have to ask him such silly questions.


In the early stages of Alzheimer’s short-term memory loss is the first sign. A person with Alzheimer’s might remember an event that happened in his or her youth, but a hour after eating cannot remember what they had for breakfast—or perhaps not remember eating breakfast.

Step by step makes me think of both Walk to End Alzheimer’s and advocacy. In September, we take steps at the Walk to End Alzheimer’s to raise funds for Alzheimer’s research and programs to help caregivers and persons with Alzheimer’s. When we advocate for Alzheimer’s research and legislation to help families, we are also taking steps.


When I first began advocacy, I felt like we were taking baby steps, but lately, I think we’ve made some gigantic steps toward finding a cure for Alzheimer’s disease and other dementias.


Step by step, we are moving forward toward our goals. The more of us who advocate, the quicker we will move forward. Just like in the song, advocates start with the “first step.”


The first step is the hardest one, but once you get started, you will hit the ground running.


·         Photo courtesy of Scarlet Lens Photography from the 2021 Sedalia Walk to End Alzheimer’s


Copyright © March 2022 by L.S. Fisher