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Posted: February 19, 2007

Practical Caregiving

When Caring Taxes Us Most, Take a Breath and Keep Moving

Finding purpose and strength in the waning days of our caregiving is often a challenge we face with dread or at least frustration. The everyday efforts we must make, in the face of our parent or spouse slipping further and further from us, taxes us in many ways -- not the least of them emotionally but also financially.


 

 

That's what Pat and Anita are dealing with as they maintain their focus while caring a husband (Pat) and a mother (Anita). They both need a boost in different ways and have written me for my input. I pulled their emails from my e-mailbag and will offer them my best, while sharing their stories with you.

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Dear Jean:

I can sympathize with the person who says she wished her husband dead. My husband of 45 years has dementia and I don’t see an end to this, either. Thank you so much for putting that in your column. It helped me a lot to know that others feel the same way I do.

On top of everything else, I am now running into financial problems. It costs so much to take care of him, and the price of everything keeps going up while our income doesn’t. Can he claim disability if he is on Social Security? I want to keep him at home as long as I can.
Pat B., New Haven, Connecticut
 
Dear Pat:

I don’t know how it works, but there is Social Security and there is disability, which works with Social Security. I don’t know if you can get both or if it is a choice of one or the other. Call your Social Security office and ask about it.

Why don’t you also call the U.S. Administration on Aging at the toll-free number 1-800-677-1116? Their office hours are Monday through Friday 9:00 AM to 8:00 PM (ET). They will tell you where to call in your state to find the information you need. Be sure to explain your situation when you call both places, and ask if there is anything else they know of that might help you and your husband.

Another thing you can do is go to http://www.benefitscheckup.org/ and run through the section that says, “Find Benefits Programs." Click on the Get Started button. You don’t have to tell them who you are. It will tell you if there are other programs you should check to see if you or your husband qualifies for them.
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Dear Jean:

I was a single Mom and raised my children while holding down a stressful job. I quit my full-time job to take care of my 92-year-old mom three years ago and have been working a part-time job since then. Mom goes to adult day-care when I work.

Mom has dementia. I have to do everything for her now. I decide what clothes she should wear, when she gets up, when she goes to bed, etc. She doesn’t want to do what I tell her to do. She’s like a kid. I have to tell her over and over again to do something, and even then she won’t do it.
How did you handle the frustrations and anger you had?
Anita G., Ft. Worth, Texas
 
Dear Anita:

Your mother's dementia is going to get worse, and she will need your guidance more and more. Sit down and have a talk with yourself. I know that sounds a little far out, but that is exactly what you need to do. Try to think of what it is like to be in her situation. She is forgetting, and that is very frustrating. It also makes her afraid and also a little angry. Trying to follow these tips helped me a lot.

When Mom was at the stage your mother is, she would get very frustrated when she couldn't remember something. I found that if I told her I understood and it had to be very frustrating to forget things, she agreed and seemed to calm down. I think knowing that I understood --even though I had never experienced it -- helped her.

Also, I found that when I tried to get Mom to do something, I would rush her. She didn't really comprehend exactly what I was trying to get her to do, or that it needed done at that particular time, and she would start to resist. Give your mother more time and remind her (gently) more often and she will probably come around and do it.

There is something else you also need to consider. Your mother is leaving you. She isn't dying immediately, but she is becoming a person you have never known. You are now like a mother to her. That is something hard to face because we naturally don't want that to happen. It is happening, though. Instead of continuing to learn and becoming more intelligent, she is unlearning and slipping backwards. She needs you very much, and one of these days she won't be able to be left alone.

You need to face the situation the way it is rather than the way you want it to be. Once you work through your own feelings of grief (yes, even now), frustration and anger, you will be better able to deal with your mother's problems.

The thing I found that helped me most was to always remind myself to look at everything from her viewpoint. And, if you get too upset, just stop and tell her you love her. You can scream it if you want, but simply telling her you love her will help you. I used to do that with my kids all the time and it helped me a lot too.
 

Finding purpose and strength in the waning days of our caregiving is often a challenge we face with dread or at least frustration. The everyday efforts we must make, in the face of our parent or spouse slipping further and further from us, taxes us in many ways -- not the least of them emotionally but also financially.

 

That's what Pat and Anita are dealing with as they maintain their focus while caring a husband (Pat) and a mother (Anita). They both need a boost in different ways and have written me for my input. I pulled their emails from my e-mailbag and will offer them my best, while sharing their stories with you.

_____

 

© 2007 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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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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