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

8 answers | Last updated: Oct 03, 2016
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 Answers

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!

Community Answers

Neicie answered...

Thank you very much for responding to my question.
I haven't come across anyone else having this problem. You've given me more insight and understanding on ways to handle this situation.
I was happy to read your suggestions and to have someone understand why this is happening. I believe you are right in many ways, by your explanations regarding this behavior. People like you are so helpful when dealing with the stress of caregiving. This site is wonderful. I always look forward to receiving my emails from Caring.com.

Carolee1945 answered...

Oh, I have the same problem. My mom does not have dementia, but she is confined to the house because at 93 she has fallen many times, and broken just about every bone in her body. We have caregivers to help her in her home. This is the absolute best article on this subject that I have read. I am so glad you asked this question. You are not alone at all. I feel guilty if I go out and have a good time. I feel like I should have taken her with me, even though it is too hard to do with the wheelchair. I am going to print this article and read and reread it.Thanks

A redneck angel answered...

At the risk of being redundant, may I suggest reading-A Bittersweet; Caring for Our Aging Parents--and Ourselves by Jane Gross-advertized else where on this site? Ideas about what to do for your problem & many more you will (or maybe even; are) facing will be there too. It is available in hard copy & digital (which is less expensive) formats. You don't need a "reader" for it, you can download a free Kindle app. for your computer or your smart-phone. After reading just the first few chapters, I found a solution to a problem I was mulling over for several months.

Sweetgeorgia80 answered...

Believe me you are not alone. My 91 year old mom lives with me and she can't get enough of my attention. I prepare her meals and spend time eating breakfast and dinner as a family. I do other chores around the house during the day and speand most evenings watching her favorite TV shows EVEN THOUGH I HAVE A HUSBAND. She is always upset when I get ready to go to bed or spend a few minutes before bedtime with my husband...when we go on vacation we take her once a year. Occasionally we are able to get away without her taking the guilt with me because she makes me feel guilty by continuing to ask me to have a good time without her :). She repeats that so much it's like it is a curse instead of a blessing. We are all in the same boat, even if there are some things that are different. Let's just hang in there together.

Gm007 answered...

I felt the same guilt as you. I too worked a full-time job and a person has only so much energy. My mom lived in an independent apartment about 15 min away from me. Being an only child, I would do all the grocery shopping, laundry, etc. In the beginning, I would visit her every day but then I just couldn't keep up so I then started visiting every other day. I continued to wear down so then I visited twice a week and eventually once a week. She had nurse's aides that would come 3 times/day to give her Rx, etc. I too felt guilty thinking I should go and do more for her.

When my mom was 91, she eventually had to move to an assisted living facility. It was very hard on her and the whole family. Since she was about 40 min away, I would go once a week. I continued to beat myself up, telling myself I should go more often and do more. But when you get to that point, you're totally spent. Don't beat yourself up like I did. You have only so much energy and can do only so much and you ARE doing a good job. My mom passed away when she was 92. She was a beautiful lady - inside and out and I know she would want only the best for me (including energy).

For the longest time while she was living, I would get up in the morning and be exhausted, even after sleeping all night. I can't tell you how many times I went to the doctor and he tested my blood for hypothyroidism. I was convinced something was wrong with me but every single time, the tests were fine. After she passed, my husband took me on a cruise. The first day, I slept 24 hrs, getting up only long enough to eat breakfast, lunch and dinner and going right back to sleep. After sleeping - peacefully - I no longer get up feeling tired. I'm sure it was exhaustion and depression that made me wake up so tired.

Hang in there. You ARE doing a good job!

Nanapaul answered...

If anyone has any help for me with this problems - please, please reply - don't know how much longer I can handle this.

My husband has been was diagnosed with throat cancer 4 years ago. After going through a horrible chemotherapy/radiation treatments which resulted in hospitalization for reactions to the treatment, he was diagnosed with Early Onset Alzheimer's and Parkinson's disease. He is 57 YEARS OLD. I tried to continue working for the last 3-1/2 years, but had to retire because of the $3,000 a month caregiver costs to keep him at home while I worked. Finally, on 3/31/11, I retired partly due to cost of care but also to spend as much time as I could with him for as long as we have. It is now May and I don't know how much more I can take. He follows me around, doesn't want me to leave him with anyone and I'm doing all of this with a caregiver coming in twice a week 3 hours a day since that's all I can afford. Family has not been alot of help. There are all kinds of help and assistance for the elderly with these illnesses, but little to none for people as young as my husband. The absolute worst part is the loneliness. Please help me!!!

Emily m. answered...

Hi Nanapaul,

Thank you very much for your post. I'm so sorry to hear about the situation you and your husband are in, that sounds very difficult.

If you'd like, you can post your own Ask & Answer question, here: https://www.caring.com/ask.

Take care, Emily | Community Manager