Are we terrible people if we wish a loved one could die?
by Carol Bradley Bursack, Editor-in-Chief
As adult children watch their parents decline over months or years, and the elders' quality of life is poor, the pain for the caregiver can be nearly unbearable. Many a caregiver has wondered why the person can't "just die." That thought can bring the caregiver horrible guilt, because our culture treats death as the worst thing that can happen. Yet, is it? That is for the sufferer to know. However, a caregiver who has fleeting thoughts that the death of a suffering elder may be preferable to the life he or she is living now is not a monster. This person is human and having human thoughts. Adding guilt to the load helps no one.
The Death Process
I'll never forget sitting at my uncle's side after the nursing home had called me and said they thought he may be dying. The message wasn't a shock. He'd had several massive strokes, the last of which put him in a local nursing home. My mom and I visited every day. My dad had survived brain surgery and was in the same home as my uncle, so Mom and I did "double duty."
I called Mom and told her I'd be right over to help her get ready and we'd go sit with my uncle (her brother-in-law). This was my first attended death.
When we arrived, Uncle Wilkes had oxygen tubes in his nose and I looked at the nurse with alarm as he had expressly said he didn't want to be kept alive artificially. She knew the meaning of my look and said, "That is just oxygen to help him breathe comfortably. We are not forcing him to breathe." I was relieved.
The nurse then asked Uncle Wilkes if he'd like antibiotics. She said it wasn't likely to help, but they could try it. With every ounce of strength he could muster, he shouted, "No!"
Thus the wait began. Uncle Wilkes had not been in pain and so he was not under hospice care. His lungs were now going to stop functioning and we just had to wait it out. There was still no pain, but some struggle with the death process as his body began to shut down. I prayed as I sat at his side, swabbing his mouth and holding his hand. Mom went back and forth between Dad and Uncle Wilkes, though she spent the most time with Dad. That was fitting.
Slowly, Uncle Wilkes grew weaker. He kept grabbing at something only he saw, and shouting his deceased wife's name. I desperately wanted him to be able to just let go. I gave him ice chips until the a nurse said just to moisten his mouth. These folks had seen a lot of death and their compassion was a gift to me. They'd cared for my uncle for several years, and his main Certified Nursing Assistant, Holly, was fighting tears. I was awed by her compassion.
The death process took a few hours, but he finally was able to die. By late afternoon, I'd driven my mother back to her apartment and returned to the nursing home to clean out my uncle's room. The funeral home attendant passed me in the hallway with a cart and body bag. I knew the body bag was for my uncle. This was a sickening reality of death, but I felt comfort that he was miserable no more. His passing had been a beautiful experience. In my opinion, there are, indeed, worse things than death. He was at peace.
In Some Cases There Seems to Be No End
I've moderated caregiving forums and answered many questions for a caregiving column. It's not unusual for someone to write that they are exhausted, their parent is miserable and has little to no quality of life, the rest of their family is suffering, but there seems to be no end. They find themselves wishing their parent would die. How awful is that?
Not awful at all, really. It's human. First, these caregivers are generally people who went into caregiving out of love. They still love their elder. Months or years after they began their caregiving journey, their parent lingers. Time has taken a toll on the employment of the caregiver, on their children, their marriage and their emotions. Their reserves are shot.
These are not people who are thinking of killing off the "old folk." These are exhausted human beings that see their caregiving, while offering many hours of joy and great rewards in some areas, as also having taken a huge toll on the rest of their lives. They are tired of suffering, and yes they want their lives to return to normal.
Well, their lives will never return to the "normal" they had before caregiving started, and once they are rested they will likely be grateful for that. They have learned compassion and the joy of giving. Yet, it's entirely normal to want to have a life that isn't consumed by an elder who wishes he or she could die. There you have it. What does a loving person do?
- Understand that you aren't alone. You aren't the only one who has these thoughts and you are not horrible. You are tired of watching suffering. You are tired of cheating your family by not giving them the time and attention they deserve. You are even tired of not being able to fully do your paid work. You are just plain tired.
- However, you are still a caregiver and you are still responsible to help your elder in the best way you can. If you have been doing it all alone, you are likely at a point where you need to accept the fact that outside help is needed. If the elder lives with you, you may need in-home care. Or, it may be time for a nursing home for the elder. Whatever the situation, if you find that you have more than a fleeting thought that you wish this person could just die and get it over with, you should be looking for help.
- You may want to call on hospice. If the person is terminal with six months or less to live, hospice can help you with your grief, with counseling for your family and with the practical help necessary to relieve you so you can rest and give attention to the others in your life.
- You may want a support group. Yes, I know you may not have time to go to one. I used to laugh at the suggestion. But there are many good ones online, some even targeted to specific diseases, so look up the disease online. The National Alzheimer's Association offers great support, and the Alzheimer's Foundation of America has a weekly phone chat.
- Get some exercise, eat right - yes, try all of those nauseatingly simple things you repeatedly hear. Generally, they do help, but only if you follow through. It's hard to do these things when you are tired and perhaps depressed. But keeping healthy yourself is essential to getting through this.
- See your doctor to find out if you are depressed. More caregivers than not suffer from clinical depression which can be treated by anti-depressants and/or counseling.
In the end, know that you aren't a horrible person for wishing your life would change. That change could mean that a person you love is suffering, and death could release them. It could mean that, meanwhile, you get help with their care so you are released from constant caregiving. And it could mean medical help for yourself. If you aren't in good shape mentally and physically, you can't help your kids, your spouse or your elder as well as you could otherwise. You aren't horrible, you are tired. Please get help.