The Caregiver Who Is Also Employed Outside The Home. How To Balance Your Life.
Many of the patients and families I work with are in a much different situation than I am. Most are retired and they are living on their retirement income and their health insurance is covered by Medicare.
When Mark had his hemorrhagic stroke, he was 46 years old and I was 44. We were in a very different situation than I had encountered for the majority of my career.
In addition to the everyday expenses, like mortgage, groceries, and the like, we also both had student loans, and he accumulated more than $15,000 in medical bills (yes, this was in addition to what insurance covered).
We also needed health insurance.
When I look back on this transition in our lives seven years ago, I can’t even tell you where my head was at. I certainly did not have a plan. I was basically in survival mode and just needed to get through each day the best way that I knew how.
Mark was hospitalized for three months. This gave me a little bit of time to get my bearings and try to get some type of plan in place.
Mark was unable to stay home alone initially. He was incontinent of bowel and bladder, was unable to walk without assistance, and could not prepare food, eat alone, or even remember how to use a telephone.
I had to return to work. Full-time. There was no choice.
Over the years I learned a few tricks, hacks, and safety nets, that has saved my sanity and provided Mark with exceptional care, even though I could not always be home.
Maintaining balance is tough, but 100% do-able!
Please note that the transition for us from in-home care to where we are now was more than two years and a marked improvement in Mark’s functional and cognitive abilities. If you are unsure about how safe any of these suggestions would be, I would strongly recommend you start by asking the primary care provider for an in-home therapy safety assessment or even speaking to your local ADRC (Aging and Disability Resource Center) for an assessment. The ADRC may also be able to help you find out what services the person you are caring for might qualify for.
To find your local ADRC representative, you can follow this link:
If you are caring for someone who is not able to ambulate independently or has the inability to respond appropriately in an emergency, I would not leave them home alone for any amount of time. A good question to ask yourself if you’re unsure is: “Could this person get out of the home safely if there was a fire?” If the answer is “no”, they should never be left alone.
While I was at work, Mark needed someone to be there to attend to his needs and ensure that he was safe. Before we left the hospital, I had arranged for a private caregiver. This did have to be paid for out of pocket, but it was what worked best for our situation at the time.
I found a nursing student who was also a certified nursing assistant. Because my job involved doing in-home visits to patients, I would arrange my visit schedule around her school schedule if needed, then my employer was kind enough to allow me to chart from home.
This worked for us for about two years, until Mark improved enough I felt I could leave him home for short periods of time, with other safety devices in place, which I will discuss later.
I would advise anyone looking for a private caregiver to check local colleges for nursing students. Accredited nursing programs have to complete a criminal background check for students before they are enrolled in the nursing program.
Another great resource that many of my own patients have used is:
You can find a wide variety of caregivers on this site. Many manage their own taxes and have various levels of experience, including registered nurses who work 100% independently.
Again, this is an out-of-pocket expense for most families, unless you have a long-term care insurance policy, in which case these expenses may be covered.
If this is not an option for you, another consideration could be adult day programs. These allow those with medical needs to participate in activities throughout the day, include socialization, meals and many will even administer medications.
These programs are located throughout the country. Check out this link to find one in your area:
Medical Alert Systems
Yes! This is the old “I’ve fallen and I can’t get up” commercial. However, this has 100% given me so much piece of mind about our situation. The technology on these devices is amazing now! The one that I currently have for Mark actually has fall detection. It will alert the company if there is a sudden change in the position of his pendant.
There are so many that are available now and the cost is minimal for the service that is provided.
If Mark pushes the pendent or he falls, a voice will come over the speaker and ask if he’s OK. If he says no or does not respond, they will alert emergency personnel as well as me.
We currently use:
While this is also not covered by our insurance, I am able to use my HSA account to pay for it.
This is one of my favorite things! They are generally inexpensive, easy to install, and can be monitored from any smartphone.
Due to his brain injury, Mark will often not answer his phone if I call home to check on him. This used to send me into an absolute anxiety attack! Now I just open the app on my phone and I can see exactly what he’s doing anywhere in the house.
I can even talk to him through the cameras.
I have cameras outside the home as well just in case someone comes to the door when I’m not home, which is also a concern due to Mark’s brain injury.
Knowing that I can just look in during the day if needed brings me a great relief when I need to be gone to see patients or even just run to an appointment.
Emergency Information Sheet
One thing I would advise any caregiver to do is to ensure you have a one-page emergency sheet available, in plain sight, if you are ever not with the person you are caring for and they need to be transported to the hospital.
I have this on my fridge. If I ever needed to call emergency services for Mark while I was not at home, I can direct the emergency personnel to grab this sheet, which has Mark’s medications, diagnoses, date of birth, and names and numbers of his physicians for anyone to easily reference.
Most times if someone is rushed to the emergency room and they are unable to speak for themselves, medical personnel will not have time to find their medical records and read through them. This can lead to the risk of a wrong diagnosis, inappropriate treatments, and other medical errors.
Using a one-page, easy-to-read sheet can make all the difference for those providing care.
Medical Alert Bracelet
For Mark, I have a medical alert bracelet on him at all times. These are very inexpensive and are perfect if the person you are caring for has some cognitive disability that may make it difficult for them to explain their medical needs.
Mark’s bracelet lists his name, date of birth, allergies, and his diagnoses of Moya Moya and brain injury with my phone number listed.
In the event that Mark ever got lost, he does not know his address or my phone number, due to his brain injury. It would be important for anyone who came in contact with him, the police, for example, to know that he has an impairment that prevents him from remembering and for them to know who to contact.
Because we live in Wisconsin and obviously the weather can impact your plans daily, I also ensure that I have a backup plan if I was unable to get home quickly or on time. I have multiple family members who live nearby and can come to our home if needed.
The other thing, which was really difficult for me initially, is sharing Mark’s diagnoses with our neighbors when we moved into this neighborhood. As a new person, and in this day and age, it’s often hard to put yourself out there. However, I did feel it was important for our neighbors to understand Mark and to know that if anything ever looks fishy, they have my permission to be nosy and to call me if needed!
By doing this I have also witnessed the GOOD in people. Our neighbors are always so lovely to Mark, even when he may introduce himself again, even though he’s known you for three years! They are also so tolerant when he asks them the same questions three times in 20 minutes.
Over the last seven years, I have had to leave jobs because of my responsibilities at home. So maybe an employer was originally very understanding and flexible, but the company was acquired by someone else and now they have no flexibility for a nurse practitioner with a disabled husband.
This has really taught me a lot about our healthcare system, what MY priorities are and that there are always ways to work things out. Sometimes we just have to think outside the box.
My hope is that you will find this information useful if you need are a caregiver who is also needing to work outside the home.
If you have other ideas or things that have worked for you, please let me know!
I firmly believe that the world is full of creative and brilliant problem solvers and I am always open to learning and sharing what has worked for other families!