If there's one emotion that nearly anyone caring for vulnerable people can count on it is guilt. We feel guilty about a decision to take some kind of action. We feel guilty about a decision to wait. We feel guilty about asking others to help. We feel guilty about not asking for help. Caregiver guilt is human, and for most caregivers, the guilt is largely unearned.
Of course, we don't always make the right call regarding every circumstance. But we do our best. I'd hazard a guess that the most painful decision for most of us to make is whether or not it's in our loved one's best interests to place him or her in a nursing home. If it is also in our best interest, then the guilt looms even larger.
The Agingcare forum recently received a question from the agonized daughter of a woman whose mother needed increasing facility care. The daughter, who had been caring for her mother at home, said that her mother seemed to get more germs when she was in the rehab facility/nursing home. She worried that her decision to have the facility care for her mother during these heavy nursing challenges was causing her mother's ill health. Yet her mother was in the facility precisely because she had many health issues. What's the right decision?
Detaching from being the lifeline for our loved one
The woman's guilty feelings and worry are a normal response when we've been caring for someone on our own and then someone else takes over some of the duties. When my dad first needed nursing home care, I was worried about every little detail of his care. He was so very vulnerable. Even though, because my uncle was a resident of the same home I knew the staff well, fear that Dad would suffer from not having every attention I could give him gripped me for the first weeks. Eventually, I had to learn to detach a little. I knew it was painful and impractical for me to be so wrapped up in each detail of his life. The facility was excellent. Dad was as okay as he could be. He had daily attention from multiple family members. What more could I do?
If you are struggling with or regretting a decision to place your loved one in a care facility:
1. Realize that you didn't cause your loved ones illness or illnesses. He or she would continue to suffer from them whether you were the sole caregiver or there is outside help.
2. Understand that sometimes professional care is necessary for the safety or comfort of your loved one and/or for you to have some life apart from caregiving.
3. Take time to grieve your loss. Being the primary caregiver for a vulnerable person is a huge responsibility. We need to make decisions about things that often seem to have no right or wrong answers. Yet we have to decide. Once we've done so, there will be consequences, whether that means change, or for a time, life will stay as it is.
4. Learn to understand that you can't live life for other human beings. You can only help them so much. Total control of events isn't in your hands, either. Do your best, and then try to let go.
5. If you find that your loved one is being cared for in a substandard facility, or that abuse or neglect are possible, contact the long-term care ombudsman responsible for your area. The contact information for this person can be found on your state website or at www.ltcombudsman.org.
6. However, if for the most part your loved one is being well cared for, practice letting go. Do what you can for your loved one, and then move forward with your own life. You'll have more to bring to all of your relationships, and that benefits everyone.
Few aging parents or spouses would want their adult children or their mate to entirely give up living any kind of life apart from their needs. Try to remember that concept when you feel guilty about hiring outside help or placing a loved one in a nursing home.
You will still be part of the care team. You will still be your loved one's advocate. You will give much of your attention and your life to help him or her. Just don't give it all. Accept and respect reality. A commitment also to some life of your own will make you a more refreshed caregiver and protect against caregiver burnout. That's a wining situation for both sides.