I’ve been the primary caregiver for my mother with dementia/Alzheimer’s for the past nine years. She’s 86 and is fading away by inches and by bit and pieces. It is so unbelievably cruel and torturous to watch someone who was an excellent teacher and active lover of life be whittled away by this hideous disease a tiny bit at a time. I’m convinced she contracted it through hormone replacement therapy, which she had for too long and past the age of 75.
I really don’t know how to convey how horrible this is for her and for me. She has suffered more than we can ever know, both physically and mentally. I have given 20 percent of my life to caring for her 24/7.
Predictably, my life has received no attention at all. I have no husband, no family, no career, no retirement, no plans for the future. I’ve had to endure my own personal heartaches in silence, including losing several beloved pets over the years, losing relatives and my own battle with skin cancer. Everything is secondary when you are a caregiver. Your life is forfeited, and because this battle cannot be won, you will ultimately fail. There is simply no way to put a good face on this experience.
After all these years, I can offer only this advice to other caregivers:
- You will need God. You will need Him for help and to yell at. You’ll need His guidance, and you’ll need to be angry with Him. If you don’t have Him now, find Him as soon as possible.
- Establish one caregiver to be the final authority in decisions about caregiving. There can only be one chief in this war, but surround yourself with good advisers. Identify your support system, but remember that they will lose interest and, ultimately, not be able to give you all you need. You need to find support within yourself as well.
- Demand that your doctor hears you and responds to every one of your loved one’s needs.
- Forget about your own life and give up any hopes for the future as long as you’re a caregiver. Hope will kill your soul. Constant disappointment will destroy you. You can only survive by taking it one day at a time. There is no happy ending with this disease. Fight for quality of life and controlling symptoms.
- Keep your loved one as involved in life and activities as long as you can and as long as they are able to enjoy them.
- Don’t expect a medal for being the caregiver, and don’t accept being blamed for not being able to stay awake 24 hours a day and missing something. You’re one person doing the job of 10 people. Go easy on yourself and distance yourself from people who try to blame you. You might get a reward in heaven, but you’re not getting one here. Your only reward is knowing you gave your loved one the best and most comfortable end of life that you could.
- Set up boundaries to protect yourself. This job will wear you down to nothing, and then it begins to get difficult.
- Don’t expect a non-caregiver to ever understand what you’re going through.
- Pray. You won’t get through this without a spiritual support system. First and last, take time to pray. Find God. Find a church, if you can, to help you keep loving yourself and knowing you’re doing the right thing and your sacrifice is worth it. God is the only one who will ever understand everything that you go through.
The effort is worth it to see that your loved one is comfortable, safe and cared for. You will not come out of the experience the same person that you went into it. Pray that you will be a better person and don’t let the disease consume you.