How do I get my grandmother to accept help?

A fellow caregiver asked...

My dear grandmother is 86 years old.
She lives alone in her house that she has always lived in, and my family as well as a caregiver that visits three times a week, help her take care of the things she no longer is able to do. She never leaves the house anymore, she won't even let us take her to the beauty shop to get her hair done (its been almost a year), and everyday, she just sits in her chair in the living room. She claims she likes to live this way, but then sometimes you call her, and she said she is just staring out the window counting the cars that drive by. She watches TV, sleeps, does minimal laundry, and thats about it. She does receive meals on wheels daily, but her eating habits are horrendous, and she keeps losing weight without any medical reason to explain.

She is quite of sound mind, never misses a beat, but her body is not the same. She has accidents weekly (feces), we find messes in the bathroom, her bed, and throughout her home. She has enough diapers and pads to stock a nursing home, but she refuses to wear them, or tells us she forgets. When we try to talk to her about the problem, she says she leaks, and just has a hard time getting to the bathroom in time. All of her underwear has severe stains in the them, and all of her nightgowns are soiled as well. Today I went to visit her, and the house just smelled so badly ... I knew something happened. Her chair that she sits in daily was soiled with feces, and when I went into the bathroom, it was everywhere. She has rheumatoid arthritis, and her hands are severely disabled (she won't wear the splints that were made for her, and she denies physical therapy, so I know that cleaning up after herself when she goes to the bathroom is very difficult. She will not let the caregiver bathe her bottom half, and I just don't know why. Her sense of smell is not what it used to be, and she just doesn't realize what her house smells like as well as herself. I know she not only suffers fecal incontinence, but also urinary.

I am the closest family member to her, and she only has one daughter, my mother, and they have unspoken relationship issues. My grandmother gets very nasty when we try to talk to her about her issues, and is in total denial. She ignores the incontinence problem, and she really has no understanding of her situation. She always says she can drive, but doesn't realize its been over a year at least since she has,for example. My mom tried to talk to her about assisted living, but she outright refuses, and my grandmother just gets angry at her. My grandmother is very antisocial, and insists that she is not ready to move, and we just wonder how well she would actually do in a situation like that. My mom thinks she would resent us, and be very angry if she took the upper hand and forced her into a situation like that.

Today I told her I was worried about her, and that I did not feel she was properly being cared for. She told me she would try harder, and I told her its not about trying harder ... she just needs help and thats okay. She told me she was ashamed of herself, and I told her not to be, and that its part of life, and that she needs to wear the pads and diapers to prevent accidents, and that she needs to let her caregiver bathe her. She told me to leave her alone.

I just don't know what to do to help her. Do we just let her sit in that chair and waste away? How do we get her to let her caregiver help her, or should we be taking control of the situation and forcing a very stubborn and proud lady into something she does not want to do? Any comment would be much appreciated! It just breaks my heart to see her like this, and she is so stubborn!

Expert Answer

As Founder and Director of Circles of Care, Ann Cason provides caregiving, consulting, and training services to individuals and public and private organizations involved in eldercare. She is the author of Circles of Care: How to Set Up Quality Home Care for Our Elders.

It is wonderful to have such a heartfelt question from a granddaughter. There are many family caregivers who wonder if getting a parent to accept help for incontinece is possible.

However, incontinence is only one issue. Her hands are arthritic,, she can't move easily so she can't make it to the bathroom or clean herself properly. Incotinence is also a result of her general sense of collapse. She says, "I am so ashamed." In our society, approaching the end of life causes shame and fear. It is like a dance with the devil. How shameful it is to lose lose control of urine and bowels and appetite and a general sense of movement through life. Your grandmother may still have a good memory, but she has lost interest in life and living. Does she need treament for depression or does she need to process what is happening to her?
She is stubborn. "Leave me alone."she says. It is easy to anger her. Can you find someone to partner with when you go to see her? It could be another family member or a professional or clergy. You need support to stay steady when you say to your grandmother, "I love you, I want to help you, but Grandmother, You do not smell good. Your house smells bad." When she tells you to leave her alone, back off a little bit. Don't be afraid to come back again in the next hour or the next day with the same words. "I am so sorry grandmother, but I can't let you sit in your waste. You are a much loved and valuable human being. Your family cares for you. If you won't let your caregiver clean you, I will do it. I will bring a nurse to help."

Another important issue to explore is your grandmother's relationship to her caregiver. This is very delicate, but you need to find out if there is a way to support the caregiver. Is it your grandmother or her caregiver who does not want to clean her bottom? Do you need a specially trained personal care attendent to come once or twice a week to supplement the work of your dear grandmother's helper. Does your grandmother trust the caregiver? Can she support what you are trying to do or would the caregiver be afraid of being fired? Sometimes family is afraid of communicating with professional caregivers for fear that she will quit her job. One thing to take note of is the use of terminology. Nowadays, incontinence products have names more suited to adults than the term diapers, which are for babies. One of the sponsors of Caring.com which you can find on the incontinence page has a web site called Tena.us which gives many tips as well as new products.

In all ways we need to expand the world around your grandmother. We need to form a team.

The key to working with your grandmother is getting all elements in her life working together, communicating, offering support to each other, sharing the wisdom of different points of view. Then you can coax her instead of forcing. Be patient. I feel that you will be able, over time, to ease her way and yours. Please don't hesitate to write again to let us know how it is going.