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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 - 08/06/09

This question might have been asked already but I need some answers/suggestions. 

How can I continue to go out and do things for myself, take a break etc. without feeling guilty?  Without feeling like I am letting my loved one down?


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Name: Roxanna
Location: Champaign, IL
Date: 08/06/2009
Time: 07:03 AM


To put things in a different light. If you do not go and continue to do things for yourself you will not be able to continue to care for your loved one without feeling resentment which would be worse than feeling the guilt. Taking care of your needs allows you the little breaks you need.

Name: Greta Herron
Location: NYC
Date: 08/06/2009
Time: 07:27 AM


Lose your guilt by remembering that taking care of yourself ultimately helps you take care of your loved one. If you run yourself into the ground, trying to do everything and be there every second, then what will they do? Keeping yourself healthy--emotionally and physically will help you be a better caregiver--and to remember that this is someone you care about.

Name: nancy
Location: Oregon
Date: 08/06/2009
Time: 08:28 AM


The best gift you can give your loved one is a more relaxed and refreshed caregiver. When you return from respite, you can bring a new smile home with you and view the situation of care with less stress. Before your next time off, plan a special snack and activity for your loved one with the respite worker. Your loved one may also benefit from a change in the regular care routine. You won't be letting your loved one down, because  you always return.

Name: Kathleen Chamberlin MSW
Location: Manchester, NH
Date: 08/06/2009
Time: 09:15 AM


I try to assist caregivers by having them picture themselves as a well. There is only so much you can give from your well before it runs dry. Then you are left with nothing to give to your loved one or yourself. If you keep a steady stream of "positive self-care" running into your well, you will have plenty to provide to your loved one/s. You will also feel better about yourself and your abilities as a caregiver. I hope this helps.

Name: Nancy Hudson
Location: Roseburg, Oregon
Date: 08/06/2009
Time: 09:42 AM


I once saw a documentary of a mother who had given birth to triplets born prematurely--she did everything she was supposed to do, complete bed rest, etc., yet still the babies came too early. As a result of their lack of development, drugs were given to keep the babies alive. The "side effects" of the drugs resulted in deafness and blindness in the babies. In her care of the children, she explained that she never looked out her window at the sunrise or sunset, never listened to beautiful music, because her children could not do so, and she would not allow herself to enjoy the things they could not! Guilt can be good if we have truly done something for which we need to apologize (and as caregivers we are sometimes imperfect), but, if it is "misplaced" guilt, we end up creating an atmosphere of unnecessary "heaviness," and we can grow to resent the very person we love! The mother mentioned above cannot become "blind" and "deaf" like her children; she would not be able to "care" for them if she did! We as caregivers cannot lay down and become "ill" with our care recipients, because they would be denied the wonderful gift we offer--loving care. I encourage you to take your "breaks" and "time away" so that you can truly give the love and care your loved one needs!

Name: Ann
Location: Texas
Date: 08/06/2009
Time: 11:49 AM


It is not easy not to feel guilty leaving your loved one. However, if you do not get respite, you will become sick yourself. How can you help someone, when you need help yourself? Check with your local senior help office (usually on a state website) for information on how to get respite assistance.

Name: Judy
Location: Montana
Date: 08/06/2009
Time: 12:15 PM


Try to Remember: You did not make your loved one dependent on Caregiving (You didn't do this to someone) You will have nothing left to give to your loved one if you don't take care of yourself Your loved one deserves the "best you" you can be or become Caregivers who don't take care of themselves all too often suffer preventable health problems Caregivers who don't take care of themselves all too often die before the person they are caring for Last-Guilt is the largest waste of time and energy in the emotional inventory. The fact that you are fighting escalating guilt may indicate how much you need those breaks and to take care of you. Please find a caregivers support group that you can attend and grow from.

Name: Jim
Location: Maryland
Date: 08/06/2009
Time: 12:29 PM


You can’t. The amount of guilt you feel is directly proportional to the amount of love you have for your loved one. I have read countless thoughts on this subject and I have been to a shrink to talk about it, etc. The thought I remember the most is one from a lady who said it NEVER went away for her. My guilt has slowly diminished each month and then each year for seven years now. I still fight it off several times a day but my spouse is now in a nursing home and I get some physical relief from the reminders as I do things that have to be done to survive. You have to eat and keep the house clean, etc. Sometimes, when I visit her, even now, which I have to limit to once every other day to save myself from another heart attack, I am overcome with guilt and breakdown. I took care of her for 5 years until I could barely walk anymore and then my heart gave out and if I don’t follow my cardio regimen of exercise and proper eating, etc., I will have another attack and then who will visit her? The kids are overwhelmed with trying to survive in this economy. Both children and their spouses work. My daughter does daycare from six in the morning until six in the evening. They do the best they can to visit but with two children to raise, it is difficult to find time to visit their mom and then when they do visit the time is draining because my wife has aphasia and can’t express herself in any coherent way. You must get out and around for walks and window shopping or whatever because it will kill you if you don’t get some respite. I had to “just do it” and “do it” over and over many times to get away from the stress. The first times were the worst and were mostly robotic motions and talking. It is better now because you have to learn how to do it and finally the guilt subsides for awhile and then it subsides for longer periods but it never goes away completely for me. We did everything together and were a private couple which does make it harder to be separated and for one or the other to be ill. Just keep doing it again and again and again. It will get better. Prayer helps if you are religious. It forces you to release those thoughts to the Lord and He will help you through it. I always start my prayer with, “Forgive me for I know not what I do. I was not prepared for this and I need you to show me what to do.” That gets ME started to continue with my thoughts in my prayer. Nobody tells you what to do. They tell you you have to do it but then you are on your own. I hope this gives you something to try or gives you an idea of something you believe in or can use to deal with the guilt. I think it was Ernie Pyle who said, “There are on atheists in foxholes.”

Name: Jean
Location: Jefferson, Ohio
Date: 08/07/2009
Time: 05:21 AM


Yes its very important for you to have time to your self. Start a new hobby, go to the local community Center and take a class, make arrangements with other family members for a 2 to 3 hour time out for you while they keep an eye on your loved one at least 1 time a week. Ask your Pastor- let him know of your need for Volunteer Caregivers just to spend time at your home with your loved one so you can get out....This could take place when they are napping... If this is a Hospice situation, They have Volunteers that can spend as much time with your loved one as you need- Also Faith in Action has Volunteers- don't turn down any offers of HELP- Even a break from your daily household chores and cleaning will give you time to sit outside the house in a lawn chair with a good book and a tall glass of Lemonade for a hour... When others come for a visit or time out for you- Go take a walk, either outside or at the local Mall...Also you can share your Love of Music, Poetry or movies/reading out loud with your Loved one at a special time each week... They might look forward to this special hour- then afterwards you take a hour for your self in another part of the house. take a nice relaxing shower, or bubblebath...A client of mine years ago who was being taken care of by her husband loved it when HE painted her toenails with bright red or Pink nail polish- she could hardly speak but would grin when he did this for her.... So what ever you can do for YOURSELF will make the time you spend with your Loved one even more special and will create even more special memories in the years to come....


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