What can I say to my mom with dementia when I have to leave so she isn't so sad?

A fellow caregiver asked...

My father passed away 2 and 1/2 years ago and my mother has been in a nursing home for 2 years. She is very lonesome and needy. She depends on me for everything (in which I do),especially because I am her only daughter of 5 children. She wants me with her all the time. I visit every day for 1-2 hours and when it's time to leave she has a hard time letting go. This causes a stressful situation for me. She never gets enough of me and makes me feel guilty when I leave her. Part of me doesn't want to visit her in order to avoid hearing her being sad or complaining about me leaving. She is 87, has neuropathy and dementia, along with some other other medical issues. She is confined to a wheelchair or bed. She just doesn't understand why/when I have to leave. I work a full time job, take care of my household duties, try to spend time with my two grown children and husband at home. It's hard to find time for them and myself. I am TIRED! What can I say to her when I must leave so she doesn't fret over it? Please help.

Expert Answer

Joanne Koenig Coste is a nationally recognized expert on Alzheimer's care and an outspoken advocate for patient and family care. She is the author of Learning to Speak Alzheimer's. Also, she currently is in private practice as an Alzheimer's family therapist. Ms. Koenig Coste also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.

For dutiful daughters, guilt seems to be a by-product of caring. Most likely part of your guilt stems from the feeling that you relinquished an essential part of what you perceive to be nurturing. Even when the need for placement in a nursing home is clear, the action itself may be a powerful blow to your maternal tie. With a move to new surroundings, residents may act out in a need to feel control over something in their new life. Unfortunately the family member is almost always the butt of their contention. Do remember, that even with disease like Alzheimer's, our parents still know how to push our buttons - after all, they were the ones who installed them in the first place! I would suggest you try to keep your visits to an hour or less and visit every other day to give you both a break. This schedule not only allows your mother the opportunity to establish a routine within the nursing home community but it also makes the shorter visit more meaningful and less apt to play into mom's control issues. Check with the staff for the hours of meals and activities and plan your visit just before these happenings. Have one of the nursing assistants bring mom to the dining room or activity space as you are leaving or arrange to have one of them visit in her room. This is your cue to scoot while it offers her the chance to become engaged with someone other than you and gives her a different focus. It is important to realize that your mother probably has little concept of time. Frequently, when a family member leaves the parent's room and returns a short time later, they are angrily greeted with, "Where have you been. I haven't seen you for days!" Visiting more often does nothing to diffuse this lack of short term memory and reminding her of your previous presence does nothing to change her mind. Mom does not MAKE you feel guilty, you do! Do not allow yourself to feel guilty for something you have absolutely no control over. You may want to check in with the staff after you have left. Most likely you will find your mom engaged and adjusting. This angry reaction to your leaving is a result of the disease process and not an intentional act to make you feel guilty. Although, I'm sure it may often feel like that, you need to keep repeating to yourself "I am doing the best I can". Older folks with a dementia quite easily pick up on messages our body language gives. You could be putting forth non-verbal communication of both your fatigue and your guilt and she is responding to these messages. Try to be aware of these negative communications and when you first begin to feel disagreeable responses arising, kiss her good-bye, say "See you later" and leave. Do not allow time for negativity to surplant a positive visit. Remember that placing your mom where she could get the best care possible for both the dementia and her medical problems was a brave act of loving. Pat yourself on the back for having made that wise decision. It is now time to take care of you!