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Elder Care: A Question of Ethics

By Christina Mulberry

I've been responsible for the care of my 83 year old mother for approximately 9 years since my father died. At first of course, it was simple enough. She was fairly healthy and although she lived an hour away, she rarely needed much help that she didn't hire.

However in the past 4 years, all of that has changed.

My mother is not a social person, and she always completely refused all attempts to get her involved in anything that requires her to leave her house. Alone especially. I can coerce her into shopping with me and so forth, but that's it.

She also refuses nearly all advice about her health. The need to exercise for example. Even in the form of a daily stroll around the block, she wouldn't do it. Now her balance and strength is so poor, she can't engage in such activities. She has refused going to rehab to build strength and balance, but agreed to purchase some 2lb weights to use in doing some chair exercises. Of course, she's not compliant in doing that either.

Over the past nine years, her health has deteriorated. She has osteoporosis and high cholesterol, both of which she does treat with prescribed medications. Her weight is down from it's typical 98 pounds to 77 pounds and she has a number of other medical problems. She has no energy to walk more than very short distances. Sometimes when I arrive at her house, she is unable to walk through the grocery and I end up doing it for her.

She does comply with taking monthly B12 shots which I administer. With a lot of pushing, I can get her to go to the doctor much of the time. However, she only agrees to specialist appointments once I manage to get her family physician to push the issue with her. This slowness to respond has resulted in some problems such as loss of peripheral vision due to glaucoma that wasn't caught in time.

I've tried hard to present options to her that will improve her health or increase her safety. But, it's always a battle. And even when I think I've won, I find later that her compliance is poor. For instance, we bought a medical alert system so that she could call for help if needed, but she refused for months to wear it in the bath or when she gets up out of bed at night to wander into the kitchen. The two times she is at greatest risk for a fall. Following much discussion, she conceded, but that doesn't mean compliance will continue indefinitely.

It's been difficult to allow her to make her own decisions but I feel it's her right. She's cognitively intact and it's all her choice. Since she rejects most of my best advice, I've had to settle for some less than perfect solutions.

I worked in adult physical rehabilitation for years, and I know that in her bathroom we should install grab bars. She refused. She didn't want to mess up the walls of her shower or her tub. We finally compromised on some suction cup style grab bars. I have to check them every week when I'm there to be sure they are still secure. They sometimes aren't.

She also needs a tub bench but refuses that as well. To give her what she wanted, I finally found a spa booster seat that is merely a water filled cushion that will boost her up a few inches. I found one model with suction cups but I'm not convinced that it's safe; or indeed that it doesn't create danger itself. I'll have to test it thoroughly next week when I'm there. She has refused to use her walk in shower with seat although it's a great option as well.

She won't have anything to do with having someone come to help her bathe, to evaluate her home for safety, or for moving closer to my home to allow me to assist.

At this point, I'm struggling with an ethical dilema. Something is going to happen to her. She will fall, she may have a stroke, or have some other medical emergency. She can prepare food adequately but she may well become so emaciated that she dies as she refuses everything suggested to help her gain weight.

Despite her gradual decline, I'm not sure I should attempt to force anything. She is capable of making her own decisions. She's 83 years old and should be allowed to do what she wants, not what some well intending relative insists she do. It's not like her health won't fail or she won't die if she does exactly what I think she should do.

If she were incompetent or a child, I would feel differently. Aside from how I would feel if something were to happen, or rather when it happens, I still struggle with the ethics. Should care be forced upon her or should she be allowed to make her own decisions even when they appear to be very poor choices? Clearly millions of people continue to smoke despite the fact it will likely cause cancer. Millions continue to consume high fat diets despite their struggle with obesity and the other health risks it carries. We don't force these individuals to comply. So are the decisions my mother makes really any different?

I'm sure millions of caregivers have faced this issue, and now I'm wondering how they dealt with this ethical question.

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I screened this intel, and I was saddened by the situation. It is not an easy choice, I am sure. If your mother is of sound mind, then I suppose I take the position that she is entitled to make her own choices -- as difficult that that may be for others to sit and watch. I am sorry that you must face this trying situation.

I know studies have shown that many people who are gravely ill die at night in the hospital, when their families are absent. They want to die, but they manage to wait until no one is there to stop them. I have to think that we have the right to let go in the way we choose.

Thank you for sharing the details of something very personal. Your dilemma seems to be how much control you should exert over your mother's life, and it looks as if you are wedged between a rock and a hard place. If you allow her to go into a natural decline you might get blamed for not doing more, and if you take complete control - using legal power to have her committed to a home by force, for instance - it could damage the fragile relationship you have with your mother.

Ultimately, I think, you are best off doing what is easiest for you, i.e. what you personally feel most comfortable doing.

Yes, it is about how much control to exert. I insist on control in my own life so I don't think I could imagine forcing my own will over hers as long as she's cognitively intact.

You really are in a difficult place and similar to one I have been in recently, too. I completely agree that it is her right to do what she wants to do. Her right to choose is absolutely no different from the other examples you gave. Unfortunately when she ultimately loses her mobility, then there will come a time when social welfare agencies will butt in and take away her right to chose and yours, too. The sad thing is that they do not have a solution, either, just bureaucracy, as they are not really there to help, but rather to protect themselves from liability. As you suggest, I feel sure that compliance will not make her live longer or live better. I think it is best to just love her the way she is and do the best you can.

Thank you, I appreciate your perspective as someone who has been, or is there.

I really feel for anyone in your situation. It must be very hard to care for someone you love who doesn`t seem to respond in the way you`d like, or indeed they should. I`m not in your situation so I can`t offer much advice, other than try to keep going, and if you can ever get any help to give you a break then take it. Carers do a lot of work that can often go unnoticed.

Yes, it has it's similarities to parenting. A rather thankless job at times I understand. Kind of like a kid who drops out of school, makes the wrong friend, gets involved in drugs, etc. LOL!

Your story, is the story of growing old, for many people, Christina. The lucky children get a few extra years with their parents and the care issues are reversed. My heart goes out to all parent care-takers as many of them are in, what should, be their golden years. Love is all that we can do, until the parent is willing to accept the reverse roles.
Thank you for sharing.
Best to you.
Frederick

My situation is one that millions of us face, and I am comforted by that. Thanks for your kind words.

Hi Mulberry,
Thanks for sharing. I was in tears when I read your intel. It is indeed a tough situation.

Thanks for reading. Hopefully, you'll never find yourself in this spot.

This is a very sad tale but one many of us have to face. As someone in a similar position I have taken the stance that while my mother is able to take care of herself then she is a free spirit and therefore should not be controlled. In her place I would not want that either. If or when she reaches a stage that she can no longer care for herself then I will step in and try to manage her as best I can.

Thanks for stopping by. I agree, it's what I would want in her shoes as well.

It is not easy to care for an old person. I am currently caring for my 91 year old step-mother. The rest of my immediate family also help. Your article could have been written by me as our experience is parallel to yours.

Apart from providing for her material needs, we always talk with her. Mother is not able to do much around the house, but we talk and have become close friends. Sometimes we talk about God, sometimes about the people back home. Mum's memory is very good for past events but she has trouble remembering what was just said and we have to repeat ourselves over and over again. She remembers and talks about life when she was a little girl, in the days before 1914 so this is what we guide our conversations to.

Dispite our efforts to have mum move in with us, she insists that she is okay at home and will not come. She is trying to co-operate by wearing a medical alert device. I feel so sorry for her situation but like you am frustrated by her lack of responsibleness. You mentioned that if she were incompetent that you would feel different .. I'm left wondering how we know if someone is incompetent. If THEY think that they are competent, how can we declare them not so. It is a difficult position to be in and as you say, so many are in a similar dilemma. I am truly empathetic!

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