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Posted: June 13, 2005

Practical Caregiving

Job One: Staying on Top of Your Loved One's Needs

Taking steps to provide improved care for our loved ones is a never-ending -- but absolutely critical task -- for caregivers. Connie Jo in Colorado and Beverly in British Columbia are dealing with this caregiving fact from different angles, but the answer all comes down to one sentence: you must stay on top of your loved one's situation and plan ahead for the additional care they'll eventually need.

Let's see what Connie Jo and Beverly have to say about their situations.


Dear Jean:

Mom has been in assisted living for seven months. She suddenly became very angry with me when she didn't remember when I was there to visit. Recently, she has called me 15-20 times a day. I met with the administrator today, and I am very unhappy with what I was told.

The doctor was changing Mom's medicine for depression, but the facility didn't start the new medicine when they were supposed to, five days ago. They did start it today. I didn't know anything about any of this before today! The reason they didn't start it when planned was that the pharmacy made a mistake and didn't send it. But they knew it was supposed to be there, and they didn't make sure it was there.

They say Mom may need to be transferred to the next level of care, but when she was on her medicine for depression she wasn't as bad as she is now. How can I keep this from happening again, and why wasn't I told about the change in medicine?

Connie Jo M., Denver, Colorado

Dear Connie Jo:

You just learned a lesson that will help you during the rest of your caregiving days:don't assume that the care facility does not make mistakes. It is run by people -- and people are not perfect.

You may need to have your mother sign a Power of Attorney for Healthcare so her doctor can contact you as well as the assisted living facility on medicating matters. Ask the administrator if your mother signed one when she entered the facility, and make sure your name is on it. The laws in each state differ, and you need to know what they are in order to know how to avoid any legal problem.

Remember, ultimately you are the one in charge of your mother's care -- not the assisted living facility. Make sure you are involved with every aspect of her care. Talk to the administrator periodically, not just when there is an issue. Don't depend on the staff contacting you. They are sometimes short of staff, and sometimes they will want to contact you but don't because they have too much to do.


Dear Jean:

I don't know how I can take care of my husband. I was told recently that he is in the early stages of Alzheimer's disease. I don't know how I will do it. I don't even know what to ask you. Help!

Beverly H., Vancouver, British Columbia, Canada

Dear Beverly:

Right now you are experiencing the horrifying feeling everyone gets when they first learn their loved one has Alzheimer's disease. Try not to panic because it will be a gradual decline instead of a sudden one. You will have time to adjust to situations as they arise, and it won't be all at once.

One of the areas you will need to handle are the emotions of your husband, as well as your own. Both of you will need to adjust to the finality of this terrible disease, and it won't be easy. You both will get frustrated, but try to talk through the frustration for as long as possible.

Being a family caregiver has its own set of problems. You want to do everything perfectly, solve all the problems and make everything better. You don't want to take care of your sick husband; you want him well. Then there is the guilt you experience because you feel the way you do and can't solve all the problems. It's called caregiver guilt. Accept the fact that you can't foresee the future. Some of your decisions might be different if you could look into the future, but you can't. Make your decisions on the information you have at the time, and accept that you did the best you could with the information you had available.

Your husband is still able to think and do things. Don't hinder him. Let him do as much as possible for as long as possible. Always be on the watch for signs that he might be putting himself or someone else in danger, but don't do anything unusual until you see those signs. Let him live as normal a life as long as possible. Let him enjoy everything that he can.

This is the time to prepare for future problems. Learn as much as you can about how the disease progresses and what you can expect. Find out how to handle the various situations that may arise, but remember that you may not have to face all the situations you learn about. Contact your local Alzheimer's Association because they have a lot of information that will help you. Ask questions, then ask more questions. That is how you will learn what you need to know. Knowing what to expect and what not to expect will help you tremendously.

After you talk to someone at the Alzheimer's Association, find out what help is available for the later stages of the disease. Is your husband a veteran? Will he need to depend on Social Security? What about disability insurance? Will he need to be admitted to a nursing home? Will you have people come into the house to take care of him? There are several areas you need to check into. If you can pay for his care yourself, that is great. Most people can't afford to pay for everything themselves and they depend on long-term care insurance or government programs to pay for the care. You will need all the financial assistance you can get because it costs a lot to take care of someone with Alzheimer's disease.

In my March 8, 2004, column, Knowing What You Need Is the First Step In Getting What You Need, I provide a Needs and Resources Worksheet to help you evaluate what your current needs are and what resources you have available to fill those needs. When you find a need that you don't have resources for, ask for help from friends, family members, the government or any place else you can get the help needed.

The needs will change as your husband's disease progresses, so print off more than one form. Keep the worksheet handy and periodically re-evaluate and revise what the needs and resources are.

© 2005 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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