The Effects of Cancer or Dementia on the Caregiver in Charge
The hidden effects on the caregiver taking care of the cancer or dementia patient and how to survive the journey.
There are thousands of family members and spouses taking care of loved ones with cancer or dementia. Often, their needs and isolation go unseen, and their pain goes unnoticed. Today, this substack focuses on the caregiver, not the patient.
This is a raw substack, but I am one of many thousands of wives, husbands, and families taking care of someone they love who is either dying from a disease or from a memory disorder.
My husband has CLL, but his recent hospitalization after becoming sick with COVID and strep throat left him in a state that may not get better. Two weeks of sickness took a man who could walk a mile with our dog and do chores to a man who can hardly function physically and has lost considerable memory and executive mental function. The doctor stated that it could be forever, or he could recover some of what he has lost.
I went from the strong one to the only one who is functioning both physically and mentally. All in two weeks. We went from going to church to him refusing to see people, refusing to try, and not caring. It was an abrupt change of roles, responsibilities, and lifestyle.
I don’t know which is harder. It is watching someone slowly lose who they are, or watching the ravages of a disease. The disease is usually quicker, while the mental deterioration can go on for many years, slowly claiming them piece by piece.
The focus each day is on the one dying or who is impaired mentally, and what needs to be done. The caregiver's entire existence centers on the patient's hourly and daily needs.
You carry on because you have no choice. You put one foot in front of the other and just do it. When people ask you how your loved one is doing, you give them the report.
How many see what their caregiver is going through, and the impact on that person, and how they are managing.
Most of us who are caregivers put on a brave face and say that we are managing fine. We state don’t worry. It is not until the hours of darkness when we are alone that we admit to God and ourselves, we are one nerve off the only nerve left.
We cry silent tears for our loved one slipping away and for ourselves as we watch the process. We break inside and then put it back together and go on. It is required. You have no choice.
Inside, you are slipping away. Inside, you are losing who you are. Inside, you are drowning at times with the chores, the cleaning, the loss of sleep, the loss of who you ever were before your loved one got cancer or memory loss.
The silence of one who no longer talks at all, to conversations that make no sense at all, leads to starvation for normal conversation. You just want some normalcy in your life.
The constant realization that a conversation is not understood, cannot be understood, and will be less understood in the future hits with every conversation. You know that it will only get worse with time, not better. You are grieving for your loved one as you lose them one piece at a time. You are grieving for yourself as well, knowing your life will never be like it was.
What can the caregiver do to preserve their sanity and health while caring for those we love?
Don’t say you're fine when you are not. Admit to someone you are one nerve off the edge. If no one knows how poorly you are doing, how can they help with a hug, words, or a cup of coffee while sitting on the porch steps?
Find someone with whom you can discuss your sadness, your anger, and your frustration with what is going on. That can be a friend, counselor, minister, or someone else.
Find a time to cry to let out the emotions. Find a time when you can break down without upsetting the one with cancer.
Journal your way through the pain and sadness. Let all the emotions out in one way or another.
Join a group for the caregivers of cancer patients who are going through all the emotions and pain you are experiencing.
Listen to music that quiets your nerves, pain, and thoughts.
Read the Bible or whatever book lets you escape for a few minutes.
Go outside in the sunshine with your coffee or tea and rest your mind and body, if only for a few minutes. Take whatever break you can and rest your thoughts.
Watch the birds, check out your flowers, check out the squirrels, and see that the world is still going on despite your life being stuck.
Realize that this time, which seems like forever, will end at some point. You need to get through the time in between. Try to remember who you are and take care of yourself. Eat, take vitamins, try to get some exercise, try to keep your brain functioning and healthy, rest when you can, and find someone to give you breaks from your loved one.
Admit you are breaking and you need help.
Ask a neighbor or someone from your church or community to come by and sit with your loved one so you can have a few minutes by yourself. I know it is hard to ask, but do it anyway. Learn to say YES when people offer you help. Learn to say YES, I do need a break. I do need to talk. I do need to vent. Yes, I am breaking at times.