Empowering Caregivers-Mary's Q & A Column

Dear Mary,

I am taking care of my disabled mother. I moved in with her when I retired last year. She needs a lot of physical care because of severe rheumatoid arthritis. I love her very much and feel it is my turn to pay her back as she has always been there for me. But I have a problem I hope you can help me with. Lately I have been feeling resentful about the situation. I am tired and would love to get out occasionally, but I do not trust anyone else to help my mother. I have the money to hire someone, but I feel guilty leaving her in someone else’s care. I don’t think anyone can do as good a job as I can, and Mother agrees. I don’t know what is wrong with me, do you?

You have identified the problem: you are tired. Not only are you suffering from physical exhaustion but also from emotional exhaustion. It is called compassion fatigue. Compassion fatigue occurs when you give all you can but still feel it is not enough and are sure you are the only one who can provide good care. It is highlighted by the refusal to allow someone else to help while resenting the caregiving situation.

The first step in combating compassion fatigue is recognizing it. The next step is to reach out for help. Hire someone to stay with your mother for a short time when not much personal care is needed. Gradually increase the time as you become more comfortable with being away. Your mother may not like someone else helping but will eventually accept it.

It is important to take care of yourself if you want to be able to continue to take care of your mother. Compassion fatigue is a forerunner to depression so be proactive and take the necessary steps to prevent it.

Dear Mary,

Can you tell me how to help my father now that he is in a nursing home? I feel uneasy when I visit him. The staff is not as attentive as I think they should be, but I don’t feel it is my place to question them. They always seem rushed and short-handed. My Dad can no longer communicate well and I think he is being ignored. What can I do?

It is your place to speak up for your father. You have to be his eyes, ears, and mouth so do not hesitate to voice your concerns. Ask questions. Talk to other residents and their families about the care they are receiving. If you have concerns, take them to the appropriate staff member in a calm, undemanding, but direct way. Keep a record and expect results. If your concerns are not addressed in a timely fashion, go up the chain of command. If you fail to get resolution, or you feel the situation is dangerous, call the local Area Agency on Aging and speak to the Ombudsman. The Ombudsman is there to investigate complaints and see that appropriate care is provided. Please do not shrink from this responsibility, your Dad needs you.

Dear Mary,

I am worried about my mother who is in the late stage of Alzheimer's Disease. She is unable to get out of bed, must be fed, and can not hold her urine or bowels. She can no longer eat regular food without choking, so I have been feeding her baby food. Liquids are hard for her to swallow, but easier when I give them with a spoon. I keep her as clean and dry as possible but lately I have noticed red areas on her backside and hips. I am worried that she will get bedsores. How do I prevent them? I do not have anyone else to ask, as I care for her myself.

You sound like a very loving daughter who is doing the best you can with the knowledge you possess. God Bless you for your love and devotion.

Right now your number one course of action is to contact her physician and tell him of her condition. She needs a nutritional assessment because baby food does not meet an adult’s dietary requirements. Chances are she is not getting enough fluids from spoon-feeding and may be suffering from dehydration. Adding poor nutrition, dehydration, and incontinence to immobility will cause skin breakdown very quickly. A professional is needed to do a thorough evaluation. Talk to her doctor about Home Health nursing or call your local Area Agency on Aging for someone to come out and assess her and your needs.

If your mother and you have decided that no life sustaining measures be used, Hospice is available and her doctor should order it, tell him you want their help.

It is time to accept assistance with your mother’s care to make her last days comfortable.