How can I cope with my mother's dementia and difficult behaviors?

3 answers | Last updated: Sep 28, 2016
A fellow caregiver asked...

I left work last June to help my mother out who has dementia since about christmas this has been more and more difficult, she kept on emptying the whole house up saying she was going home to her parents who are dead. For the past while I was having to wash and iron her clothes as she was wearing the same clothes for days. She would be smelly so had to end up taking her to my house and argue with her to get a bath. I also did her housework and made meals everyday as she set the microwave on fire and tried to light her cooker with rolled up newspapers. Then she started wondering outside looking for my dad at all hours who has been dead for 9 years. Phoning me up at all hours during the night. I tried to get her to stay here one night but she slept for an hour. It just got too much so had to talk her into going for respite. When I visit she keeps asking me why I booked her in. I feel so guilty. Dr. is drafting a letter to say he thinks she is not capable of making a decision about whether to stay herself of not. Feel so guilty as she always sounds tearful and keeps going for all the doors in the home all the time. Any ideas on how to cope with this or what to say to mum

Expert Answers

Deborah Cooke is a gerontologist specializing in dementia, delirium, caregiving, and senior fitness. She is a certified dementia care provider and specialist through the Alzheimer's Foundation of America. Cooke currently manages several multidisciplinary programs to enhance well-being for hospitalized seniors and other vulnerable patients at NewYork-Presbyterian Hospital in New York City. She also serves on the board of NewYork-Presbyterian's Patient and Family Education Advisory Committee. She has 18 years of experience working with the aging and caregiver communities.

I hear your pain. Every caregiver has experienced at least one, if not all, these issues. You are not alone. It sounds like you have tried very hard to help her and you likely made the right decision to place her somewhere.

The thing to keep in mind is that you cannot rationalize with a patient who has dementia. They have their own reality. The only thing you can control is your own behavior to the situation. This is so difficult! You may consider joining a support group. Definitely find something that brings you pleasure.

Again, for your mother, it's controlling your own behavior. If really frustrated, you may need to step back and take some deep breaths. Keep an even tone of voice, be patient, and really listen. If doing something, keep it simple and offer 1-2 step directions, as necessary. You often have to go with the flow so as not to agitate her even more. Think about a teenager. You say no to something and what do they do? They go ahead and do it.

You may also look at the environment and see if there are any triggers there. Maybe she doesn't like to be near a fan, be alone, or in a particular room. Think about her normal habits before her illness. Try and work with those. Routine and productivity is paramount with dementia individuals.

Your mom is pulling your heart strings, not intentionally. It's hard to hear the pain at the other end of the line. You can be empathetic but you can't try to bring her "back" to reality. Some of these behaviors can be managed with modifications. For example, bath time is hard for many older adults. Creating a warm environment so they aren't cold; allow them to participate in the cleaning; treat it as if you were going to a spa. This isn't a method for everyone, but worth a try.

I do hope this helps. This is an extraordinarily stressful time in your life. You need to acknowledge your feelings, allow yourself to feel whatever you are feeling, and seek support.

Community Answers

A fellow caregiver answered...

thank you so much for your support. mum is settling down a bit better now. Thanks for taking the time and trouble to answer this it helps a lot to get some advice.

Deborah cooke answered...

My pleasure. I will continue to keep you in my thoughts.