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January 26, 2009
When Mom Wants to Break Up Your Relationship


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When the Inevitable Moving Day Comes for Mom and Dad


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Running Ragged in Caregiving Runaround


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Getting a Handle on Your Own Stress


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Posted: July 14, 2008

Practical Caregiving

Facing Mom's Wish to Die

What does an adult child do when their parent chooses to avoid heroic efforts to keep them alive? And where does a family caregiver turn when their dad’s home care agency drops him, saying he’s not making enough progress (whatever that is!)? 

These are the latest difficult questions from my e-mailbag. Let’s learn more about these situations and see if I can help.

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Dear Jean: 

Our family has a huge problem. Mom is in the hospital. They think she may have had a stroke, but aren’t sure yet. It could be a drug overdose. She is in a lot of pain and sometimes takes more pain pills than she should.

 

When the ambulance picked her up, my step-father told them she didn’t want to be resuscitated if she died. Our family is very dysfunctional, and none of us like our step-father. I know she has said she did not want resuscitated, but when it comes down to it, I think she would want to be. We are arguing over this, and all of us are upset with our step-father. He shouldn’t have told the ambulance driver what he did.

 

We, her children who love her very much, want to have a say in what happens to her. We want her husband to be left out of any decisions regarding her care. How can we get that done?

 

Beverly R., Dubuque, Iowa

 

Dear Beverly:

 

You and your siblings need to confront your own feelings about your mother’s possible death and her wish regarding resuscitation. Death may happen now, but it may not happen for several years. All of you children are willing to ignore your mother’s wishes and blame your step-father for doing what she wants. It isn’t up to you to decide what your mother would want when she has already told you what she does, in fact, want. You should be willing to accept her wishes.

 

When one of our parents has a serious health problem, families often react the way yours is reacting. We often aren’t ready for our mom or dad to die; we want them to live forever. Ironically, we get into a problem because medical science can keep a person’s body alive when they are not alive. It sounds as though your mother does not want to be kept alive as a vegetable. Think of it this way: if you were in a hospital bed and couldn’t move, couldn’t talk, couldn’t think, with no hope of getting better, would you want that life? Laying there unaware of anything while your muscles deteriorate might even be painful. We don’t know. What would you want?

 

Naturally, she wants to live as long as it is possible to live a good life – just not as a vegetable. If she is a vegetable, that is not a good life. She wouldn’t be able to respond to any of you. She wouldn’t be able to feed herself. She wouldn’t be able to do anything but lay in bed with a respirator keeping her alive. Someone would have to change her adult diapers, move her arms and legs, and she would probably need to be fed through a feeding tube. In my mind that would be torture. A lot of other people feel the way I do, apparently including your mother.

 

You and your siblings want her to come back to knowing you. If that can happen, that would be wonderful. I hope it does happen. But if it doesn’t, don’t get upset with your step-father. His love for her isn’t selfish. His love for her considers what she says she wants, not what he wants. I think that’s a sign of true love.

_____

 

Dear Jean:

 

We have home health care for Dad while he is recovering from a stroke. Medicare is paying for it. He isn’t fully recovered yet, but the home health care agency said they can’t continue to help him. They said he isn’t making enough progress. He needs help and we can’t afford to pay for it. What can we do?

 

Cheryl C., Gainesville, Florida

 

Dear Cheryl:

 

The first thing is to call another home health care agency. Sometimes they can take over his care when he is dropped by the agency that has been helping him.

 

Call the Administration on Aging (AoA) at their toll-free number, 1-800-677-1116, Monday through Friday, 9am to 8pm Eastern. They will give you the phone number of their office in your state. When you talk to your state office, explain your situation and ask if they know of any help for your dad. Also ask if they know of any other help your dad might be able to receive.

 

Next, run your dad's information through the following website. It is a free site set up by the government, and you may find something your elderly qualifies for that they don't know about. You don't identify them, either. The website address is: http://www.benefitscheckup.org. Good luck!

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Please send me your questions, comments and issues regarding the practical side of caregiving at ASKJEAN@caregivershome.com, and remember to take advantage of our professionals and experts in the Ask an Expert section of our website. You'll find it in the left column on our homepage.

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