It’s hard for me to do what I do and not be considered “my brothers keeper.” My motives are very simple; look out for caregivers and those they are caring for. When I started serving the families of those with Alzheimer’s dementia over 20 years ago, it was an eye opening experience to say the least. I had no idea what caregivers were going through or, unfortunately, what some were putting their loved ones through. I couldn’t imagine tying my wife into a chair or the bed at night to keep her from wandering or continuing to yell at them with the hope that what ever my point was would sink in. 

I figured it out pretty quickly. There are over 16 million informal caregivers of those with dementia in this country alone and as I always tell my lecture groups, not all of them were put on this earth to be caregivers.  I should also mention that there is no shame in that. By the way, 60% of those caregivers are women and 30% of them are daughters. I was never put on earth to take or teach physics. Math was not my calling. Likewise there are those that were never wired to be caregivers. When I lectured at The University of Rhode Island College of Nursing, I would ask them how many of them had been told by friends or family “I could never do that” when speaking about a Nursing career. 90% of the lecture hall raised their hands. 

So what is one to do when they have done the best they can and they realize they aren’t able to meet the challenges of caregiving and need more help? Alzheimer’s is a progressive disease and many find themselves able to manage the early stages of the illness however things can and will change dramatically. 

Before taking the big leap to transition into a dedicated community for the care of those with Alzheimer’s and other dementias, many families will turn to a Home Care Agency for help. There a few good ones around but like everything else, I encourage you to do your home work and make sure you’re bringing someone into your home that understands the illness and how to deal with the challenging behaviors it can and will present. Also make sure they understand that they must abide by YOUR rules. What you don’t need is the 19 year old down the street that has some babysitting experience or worse, the man or woman from an agency that thinks caregiving is watching their favorite TV shows all day and talking on their cell phone. 

When dealing with an agency don’t be afraid to ask critical questions. Will the same caregiver be assigned to your loved one or will there a different person every day? It’s better to have the same person they’re comfortable with provide them care. Have they had experience working with individuals with dementia? How much? There are professionals in the field of healthcare that want nothing to do with dealing with these special people. Have they received any special training specific to dementia? Before I recommended this one agency to families, I insisted on see the curriculum they used to train their staff. I’m happy to say that it was impressive. Are they going to be willing to follow your rules? They can watch your loved ones favorite TV shows, not theirs. Meals are about what your loved one likes, not them. This doesn’t mean you don’t accommodate the staff appropriately with options they like but they shouldn’t force your loved one to enjoy tuna fish simply because they do and it’s easier to make two of the same sandwiches than to make two different ones.

Finally, don’t be afraid to ask for references and to trust your gut feelings. Often that can be the best gauge of all. 

Questions? Email me at repe@careforcaregivers.org