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Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 01/24/12

My husband has been in hospice at home for eight months. A once-powerful VP of an oil company, he's like an infant in a high chair now. He can no longer walk or dress himself. Is it normal to get angry with his constant demands? I have a caregiver four hours a day every other day, but I feel so guilty.
 
Rita

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Name: Rhonda
Location: Austin
Date: 01/24/2012
Time: 06:32 PM

Comments

Rita, I promise you, it is normal and natural to get angry with his constant demands. One thing about caregiving is that, even though you may physically be able to get away from it, it's a lot harder to get away from it emotionally, mentally, and spiritually. If you think about, you may be grieving the loss of the way your husband used to be, the way your lives used to be and then add on to that the fear of the unkwown future you have a very normal, natural reaction of anger to the way things are now. It's great that you have some physical relief, but if you haven't yet, I would really encourage you to find a caregiver support group in your area to vent your very normal frustrations to people who can truly relate to what you are going through and who will listen with open hearts and non-judgmental ears. Anger is just as normal an emotion as joy.


Name: Sally Carey
Location: Hudson Falls, NY
Date: 01/24/2012
Time: 02:47 PM

Comments

Please don't feel guilty for your honest feelings. They are yours and are real. You have every right to be angry with the disease that caused your husband to be so different from who he used to be. Please seek more help. I think that more is certainly better. Maybe you can find an activity that you can do away from your house that brings you some happiness and, for awhile will distract you from your burden. Most of all, honor your feelings by talking with someone about them. They are real and no matter what, are yours. Hoping that you find some peace.


Name: Maureen
Location: Austell, Ga
Date: 01/24/2012
Time: 01:24 PM

Comments

Hi Rita, I think feeling guilty is a natural feeling for caregivers. Many of them are overwhelmed with caregiving duties along with their regular daily life responsibilities. I also think it is equally hard when it is a spouse. I'm sure much of his demands are from his own discontentment with what is happening to him. Being a powerful and successful person to having folks do for you can make adjustments difficult. However, I would suggest finding someone you can use to talk out your frustration so that it does not build up to anger. As for having a caregiver, you need to remember that you need to take care of you or you will not be to take care of him. If that is his complaint I would use that as a counter. I hope this has been helpful. Warmest regards,


Name: Marilyn
Location: Illinois
Date: 01/24/2012
Time: 12:15 PM

Comments

I was glad to see your question. Guess maybe I am not alone in the way I feel. My husband had a stroke over 10 years ago and I am his only caretaker. His condition is not as bad as your husband but I still feel angry with his demands. I feel cheated out of 10 years of my life. I don't like feeling this way but sometimes it is very hard. I know you can't do anything but it feels good to get it off my chest.


Name: Judy Beauchemin
Location: Branchport, NY
Date: 01/24/2012
Time: 09:18 AM

Comments

Rita, you really need to get some care for YOURSELF. You are not doing anything wrong. You are there for your husband, even though he is not the same man you used to know. I have cared for my husband for over 20 years now and he continues to need care day and night. He has a good sense of humor that helps keep us going. I get tired though, and I am sure you do too. My husband also has and aide for less than 2 hours every other day and I know that even 4 hours is sometimes not enough. I take respite time for myself now and then and have an aide with him so I can get away for the afternoon when I need a break. I hope you do that too. It doesn't change things at home, but it brings the real world back into your life for a little while. You may be resenting your situation right now and there is nothing wrong with admitting that. You have a difficult responsibility and feel trapped. I find that when I am feeling sorry for myself, it helps to work on changing my attitude and reaction to the daily demands. Sometimes I realize that I just need sleep! I have a hobby that helps, but it can be difficult to have enough time to work on it. We talk a lot and my husband is understanding even if he has to think about it awhile. He is never abusive. You should never accept abuse from your husband, no matter what his health condition is. If he is abusive to you, it may be time to put him in a Hospice home. There are some beautiful ones all across the country. Remember, you are not his servant and it's ok to say "no" to unreasonable demands. He has lost control of his life and is angry and obviously taking it out on you. Remind him that you still love him and you want to be respected and loved in return. I wish there were easy answers, but it's not easy. God bless you for all you are doing. Take time to pray for guidance.


Name: Jeanne
Location: Springtown, TX
Date: 01/24/2012
Time: 07:52 AM

Comments

Is it normal to get angry with his constant demands? Yes, it is normal. You didn't say why he was in the state he is in. Currently caring for 2 family members and I get angry. What I have to remember is to be angry with the disease, not the person. However, I have to set boundaries and you do too. I teach people how to treat me, whether they are sick or not. I have to say "No", "Not now" etc. I explain to them that they are not the only concern I have. Even with dementia in both of them, it works. I have to keep reminding them tho and that can be frustrating, but worth it. Also, you are dealing with alot of emotions. Your husband, in failing health, was/is your life. You probably have alot of anger for the situation, fear of the future, overwhelmed by trying to do the best you can to take care of him, grieving the loss of the marriage and husband you once had, etc., etc. Journal your thoughts and feelings. Write with the opposite hand you normally use and don't pick up the pen, just keep writing. Get those things on paper and turn them over to God. Let Him have them. Feelings are just feelings, neither right nor wrong. It is what we do with them. Take time out for you journalling, reading, gardening, or whatever it is you can escape to. Guilt? You have nothing to be guilty about. If you were put in a court of law, would they find you guilty? NO, they wouldn't. So allow yourself to be a human being, not a human doer. WOW, I needed to hear everything I just typed. Hope it helps you as much as it did for me. God Bless!!


Name: SONNY
Location: GLENDALE, WI
Date: 01/24/2012
Time: 06:57 AM

Comments

DEAR RITA: YOUR FEELING OF GUILT IS A NATURAL THING. BUT, THE FACT THAT YOUR HUSBAND IS ILL CERTAINLY IS NOT YOUR FAULT AND GETTING A PART TIME CARGIVER OR RESPITE PERSON IS REALLY NECESSARY FOR YOUR HEALTH. IF YOU GET ILL BECAUSE OF TOO MUCH STRESS, WHERE WILL YOUR HUSBAND BE WITHOUT YOUR CARE. BY YOU TAKING CARE OF HIM IT IS GIVING HIM THE PROPER COMFORT HE DESERVES. WHAT IF YOUR ROLES WERE REVERSED? I'M ALMOST CERTAIN YOU WOULD WANT HIM NEAR YOU. I HAVE BEEN MY WIFE'S CAREGIVER 24/7 FOR ALMOST 7 YEARS BUT FORTUNATELY SHE IS NOT TERMINAL AND HAS ALL OF HER MENTAL ABILITIES. I TOO HAVE A LADY THAT COMES THREE TIMES A WEEK FOR 3 HOURS EACH TIME TO GIVE ME SOME TIME FOR MYSELF. DON'T FEEL GUILTY, DO THE BEST THAT YOU CAN, TAKE CARE OF YOURSELF. YOU ARE RESONSIBLE FOR YOURSELF FIRST SO THAT YOU CAN BE OF HELP FOR YOUR HUSBAND. GOD BLESS, SONNY


Name: Dorothy
Location: Virginia
Date: 01/24/2012
Time: 05:56 AM

Comments

Dear Rita, I assure you your feelings are normal. A caregiver for 4 hours a day every other day still leaves you dealing with the bulk of his care. Incessant demands are very draining, there's no way to sugarcoat it. Please try not to feel guilty for being human. I recommend the Well Spouse Association (www.wellspouse.org) as a wonderful place for support for caregiving spouses. We understand! Please check out our chat room and online forum. It is such a relief to talk to others who are walking in your shoes. Best regards, Dorothy


Name: Kathy
Location: NH
Date: 01/24/2012
Time: 05:24 AM

Comments

I think it is totally normal to get angry with his constant demands. It's probably not him you are angry at, you're angry at the situation you're both in. You are very wise to have a caregiver back up and never feel guilty about that. You are a better caregiver for taking care of yourself as well. Many times the caregiver suffers more than the person being cared for as far as health related issues go. The stress of caregiving has a long time affect. You have to keep your mind and body strong and having a back up caregiver is a good step towards that!



 







 

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