Ask Denise: What Can I Do for Mom with Advanced Dementia?
First, I want to thank you for offering your help and for all the help you’ve been giving. Bless You!
Here’s my situation: My mom has dementia of the frontal lobe. Her first diagnose was verbal aphasia. It’s years later, my Mom is in a care facility on the dementia floor. She hasn’t spoken in years. At this point, it’s hard to tell if she understands anything. According to a psychologist I know who has worked with dementia patients for 30 years, my Mom’s brain has deteriorated because of her disease to the point where it doesn’t make connections, i.e. not receiving or processing the information she gets from her senses. She is mostly in a prone position with her head raised. She can open her eyes and look at you but doesn’t seem to react. Her hands and arms are stiff and are atrophying (?). She herself is very stiff. The psychologist believes that all that is left are basic automatic body responses – opening eyes, staring, etc. She has no serious illnesses so she could be with us for a long time to come.
As I understand what I have learned about her disease stage, this is the case. My sister disagrees and insists she sees signs of understanding. But that is another story.
My question for you is this: Where can I go to find out what I can do for her when I visit? I talk to her [no response, of course], feed her at mealtimes. cool her off if she’s hot and am thinking of reading to her. My torment is that I don’t know what to do for her and am hesitant to do anything for fear that on some level it would hurt instead of help. Without any kind of recognizable feedback from her, I’m torn and frustrated. I’d like to help ease her situation in any little way I can.
I visit her regularly mostly to make sure that she’s being taken care of, to indicate to the staff that her family is keeping an eye on her, to ease the strain my sister feels, and to check her condition and make sure nothing is being overlooked.
I’d like to massage her arms/hands but I need to learn if it’s OK and how to do it properly. I’d like to do anything else that is known to be helpful. I’ve been searching on the internet for quite awhile and I’ve learned a lot but I haven’t been able to find the kind of specific information I’m looking for.
What kind of things do people who know about this level of existence do with their patients? I believe there must be something that can and should be done for her as we share this life experience with her. As you know, this has been and is a long, painful, confusing and frustrating journey. My brother, sister and I have never known anyone else who went through this. We’ve done the best that we can I think but we were ill equipped to deal with it. We’re continuing to search for ways to help our Mom.
Any help you could give me in this quest would be tremendously helpful.
First, because you love your mom so much, you are doing just exactly what she needs. Loving her and visiting her are the best medicines for her.
Massaging her arms and hands is a great idea. In this stage of her disease process, range-of-motion exercises can be really helpful, particularly with the “stiffness.” Because she’s in a care facility, ask the staff to show you range-of-motions exercises you can do for your mom. The exercises will consist of moving her arms and legs to the fullest motion possible.
I’ve posted a three-part video series on range-of-motion exercises below. (Again, before beginning any exercises, check with the staff.)
I also would suggest asking the staff about Hospice services for your mom. Although she could live many years longer, it’s good to understand when your mom would be appropriate to receive the services. The Hospice staff will make sure your mom is comfortable and pain-free, as well as provide emotional support for you and your siblings.
I think your idea of reading to your mom is terrific! Bring a great book for you both to enjoy. You also can bring your mom’s favorite music for you both to listen to. And, tell her about your day–the good, bad, the frustrating. Share memories with her of when you were a kid, dishes she cooked that were your favorite, vacations you took that you loved. Perhaps the understanding is gone, but I believe she feels your presence and, most importantly, your love.
I hope this helps!
Stumped by an on-going struggle? Searching for meaning in your journey? You’re not alone!
Family caregivers ask Denise M. Brown, Editor and Publisher, Caregiving.com, for her insights and suggestions to their caregiving conundrums. Have a question for Denise? Just e-mail her. Denise will do her best to answer questions within 24 hours.
If you or your care recipient are in a crisis, we urge you to call a health care professional immediately for assistance. Denise only provides general insights about general situations. You should always consult your own lawyer, financial planner, health care professional and other professional advisors for advice specific to your situation.