Watching a loved one suffer is never easy. Alzheimer’s and other dementia-related diseases are debilitating for everyone involved. The mental and physical strain that such a diagnosis carries to the patient, their family, their friends, and their caretakers are insurmountable. To those family and friends that have been or are currently in my shoes you know. Loving and caring for someone with the disease is exhausting, with some days being better than others. And trying to express the pain or struggles to someone who has not gone through this is even tougher. But know you are not alone.
Growing up, we rely on our parents and grandparents to support and take care of us, and when the time comes the unwritten word is we will do the same for them. This journey is much easier for some than others. This unwritten word has been my own personal struggle as I navigate my life as a young adult and my role as a caretaker to a grandfather that suffers from Alzheimer’s. I know many friends that may have loved ones in similar situations but do not help in caring for them – and in no way do I fault them for that. I know that is just not how I am built. Family is and will always be the most important thing to me.
I have personally struggled with my father’s parent’s long battle with the disease, yet given I was young at the time there was not much I could do. And now our lives have been turned upside down trying to care for my grandfather amid COVID-19. Here are a few lessons I have learned (often the hard way):
1
It is okay to feel defeated and on the verge of losing it. That is a weekly occurrence in this household. Just because you feel this way does not take away from the effort and love you have towards the individual suffering from the disease. We are human after all.
2
You do not have to be perfect. For many of us, we are not healthcare professionals. We are taught not to get frustrated, yell, or get upset with the person suffering but sometimes it is all too much. Often the emotional strain on the caretakers and loved ones can be much worse than on the patient themselves. Understand these feelings are okay and you are part of a large network of people that are dealing with a similar situation.
3
You have to be an advocate for your loved one. Otherwise, the system (which is broken) will take advantage of and let the elderly fall through the cracks. Advocacy (or in my case my mother), is the only reason my grandfather has the care and services he does. The mountains of paperwork, visits, and phone calls to get Medicaid, the miscommunication between programs and agencies, and the misconstrued needs of patients suffering from Alzheimer’s can only be sought via a strong-willed advocate. Although this should not be the way things are, this is how the system is built – unless you have power or money (or a never-quit attitude like my mother) people will walk all over you and your loved one.
4
This is not an easy road. In many ways, regardless of where you live this transition will be a struggle. Watching a loved one deteriorate puts me to the point of tears most days. But throughout all of the struggles, remember no matter how tough things get that each and every day spent with your loved one is a gift. Through the anger, sadness, and wide mix of emotions, ultimately every day spent with your loved one regardless of if they remember you or are having a good day is a blessing.
As I have said, Alzheimer’s is not just a disease that affects the patient but the mentality and lives of countless family, friends, and caretakers. I remember watching my grandmother Memere’s 10+ year battle with the disease when I was only 8. I would not wish those struggles upon anyone. Since this summer, I have taken a front seat to my grandfather’s battle with the disease, but I am lucky I am in a position I can do something about it. We are working tirelessly to keep him in a nursing home diversion program so that he can remain at his home for as long as possible. So yes, I stay home, limit my social interactions, and spend much of my free time with my grandfather because as I have said before family is and always will be the most important thing to me!
If you ever need to talk or just need to vent know there are people here for you.
Upstate Vintage Living 