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ok, mom with copd, doesn't think she can visit doctor due to her SOB. She has had 3 exacerbations/pneumothoraxes since January(10 months ago). She gets SOB just from eating. We wheelchair her from bed to kitchen, where she wants to sit all day at the table and have the TV in there on at a very loud volume. She takes 37.5 mg of prednisone daily. Our efforts to wean were unsuccessful. So now, she has the COPD which led to cor pulmonale, which led to right sided heart failure and atrial fibrillation. When her prednisone was at 40 mg, she would slip into symptomatic a-fib with a rapid irregular heart rate. 37.5 mg seems to be her magic #. Starting in September, she now has pedal and pre-tibial 3+ pitting edema. I have been staying here with her everyday since she was first discharged from hospital in January. I just happened to be without a job in January, and am RN. My only sister and sibling had a job. So, I arrive every morning at about 0600. She has had history of dyspnea just after getting out of bed. I stay until 1600, when my sister gets off work. She stays till my mom goes to bed @ app. 1900. Sister lives only 10 minutes away, I live 20 minutes from our mother's house. So sister covers overnight. Then I usually have Saturday off and sister has Sunday off. This puts me with my mom for about 60 hours per week, my sister does about 22 (plus her full time job). We have consulted hospice (her pulmonologist was glad to order). But, since my sister wants her to have "happy days", we have not discussed the hospice since their initial informative visit. My mother and sister obviously expect me to be here every day, and to sit with her at the table the whole time I am here. (Mom will go to couch to elevate feet for sis, but not for me.) I feel overstimulated by the constant blare of the TV, the noise of the dehumidifier and the oxygen concentrator machine. Also, the chairs are very uncomfortable for me (herniated L5-S1). So, if I go and sit in the living room, not 20 feet from her, she acts out like she's mad at me. I am certain that I have "caregiver burnout".
I have asked that we bring someone else into the rotation, and she immediately becomes upset because she doesn't think someone besides us can help her through her bouts of SOB/dyspnea. I also feel guilty about asking for this help because she will have to pay for it. I am starting to resent my sister, my mother's sisters (never helped with her or her mother), and my mother. Sometimes she won't even lift her arm to get her robe off, even when I know she can do this without becoming SOB. I don't know who to talk to. My husband is RN as well, and appears to have no empathy for me whatsoever. He will ask how I am, but I can tell he really doesn't want to hear the answer. (His mother died just one year ago in home hospice for Alzheimers. I helped his family care for her in her home during the last month of her life.) I can't talk with my sister, because she will just think I'm trying to scoot out of my responsibilty. I cry all the way home every day. I am seeing a therapist who has me on high dose of SSRI antidepressant and mood stabliizers. She validates my feelings, but it's not enough. She tells me that I am in constant agony and she is right, but I can't seem to feel better. Now, mom's abdomen is distended, and I don't know if it is just more edema or liver failure, because we are all afraid to make a trip to the doctors' office because we fear a large dyspneic episode. Why can't I selflessly sit next to her all day like my sister does? I'm the nurse; she's not. WTH?

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Thank you all so much. It is such a relief to not feel so isolated. Your comments and advice are appreciated.
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NO ONE can do EVERYTHING all of the time for their loved one. It is physically and mentally impossible. I agree with all the advice given--get some help. You are not a machine--you need to care for yourself so that you can continue to care for her. Also, be assured that caregiving cannot always be done alone. Sometimes nursing home or hospice care is the very thing that is needed to provide a safe environment for your loved one. Sometimes the best way to honor a parent is to let someone else who is better equipped do the caregiving. Hang in there and be gentle with yourself.
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copddaughter, I have been taking care of my husband with dementia since June 2003. I think I do a good job, and professionals have told me I do. But I'll tell you this: I could not possibly sit at a table with him with his television blaring 60 hours a week. I simply could not do it. I'd be in a rubber room myself, long ago, and what good would that have done him?

So first, recognize your own strengths, abilities, and limits. Arrange your caregiving to make the most of your strengths and to work within your limits. Along with taking up scatter rugs and installing grab bars, one of the very first things I did was get a wireless headset for my husband to watch TV. I can no longer be in another room with the door shut -- I need to be able to hear his movements or if he calls for me -- but, lordy, I do not have to listen to television, especially at the volume he needs!

If you need to spend so much time in the ktichen, why don't you have a good comfortable chair in there?

Mom doesn't like it when you are in another room? Sorry, Mom. You don't always get exactly what you want, like 100% of the rest of the earth's population. If you need to be aware of Mom when you are in another room, use a baby monitor. (I'm doing that to listen to the bedroom where hubby is as I type this in my office right now.) And that is another reason to mute the television -- so you can hear Mother without distracting noise.

I don't understand how hospice would end "happy days." On the contrary, I believe their whole purpose is to make the final stage of life as comfortable and happy as it can be.

You feel guility about asking for help because Mother will have to pay for it. And that is a problem because ... she needs to save it for her old age? It means she can't go on an around-the-world cruise? It will reduce your inheritance? It seems to me that caring for herself is exactly what that money should be used for.

My advice? First of all you need some respite. You need a week or two off. No one will like that, but it still has to be done, because the consequences of premanent burnout are even worse than facing some unhappiness.

Next, when you come back, hopefully a bit refreshed, rearrange the caregiving job so that you can do it more gracefully (to use your term). And please give up the notion that Mother gets to have absolutely everything she wants from you all the time.

Also, please revisit the idea of hospice and/or in-home care services. It doesn't sound like you, your sister, and your mother are being very realistic about available options.

Good luck to you,
Jeanne
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Sorry about that. To continue: I think it's sad that your husband can't respond to you in an understanding way, listen attentively and, hopefully, offer some guidance. That's a loss for you in addition to taking care of your mom.

Your sis works full time, but it is a completely different environment than the one you find yourself in with your mom. You may match each other, hour for hour, put the experience is different during many of those hours.

If being with your mom constantly is making you miserable then find a way to change it. I agree with coulditbeme that you need to have a heart to heart with your sister. You can respect her dedication, but also honor the fact that the M-F routine brings on too much discomfort and unhappiness for you. You need a break from the full time job of sitting at the table with mom. Contact your local area on aging and see what help they have to suggest. Be sure to talk specifically with the person who handles the needs of care givers. Talk to care giver agencies in your area. Talk to Home Health and your mom's doctor about her being home bound and see if medical attention can be provided in home.

It's a hard road that you are on and you have to be able to cope for the long run. Get some help so you and your sis can remain connected and a good support to your mom.

Best wishes, Cattails
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COPDDAUGHTER:
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Sorry copddaughter!. I always hit wrong buttons.
Your sis is helping you. I would try to talk to her about your situation. I believe she would want to work out something with you because she wouldn't want to lose your help. I know I would love to have help. If she misconstrues your intentions, try to explain. Remember, you know this is stressful for both of you and that makes for tired people. Tired people can sometimes be not so understanding, non attentive and so on. Make a plan of discussion and check off each plan , write down the course of action. (that works for me). I really hope you all can work this out. I don't know if your mom has been good to you all in the past. If you are like me, you don't want to be there and can't leave either. I am after 8 months still trying to get something right. The posts are great, so hopeful, helpful, insightful. Keep on asking, keep on trying. You'll see that you and your sis can work this out with your mom.
Also, if you cannot sit and watch tv in the kitchen without pain then sit in the living room and disassociate ....I love the word disassociate. Hope love peace and prayers to you.
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Maybe it is because she is not a nurse she can sit with her. I don't know what job your sis does. My sister can mom to do all kinds of things I cannot; however, she doesnt come to see mom or help me . I too was not working when mom needed full time care. I have several disabilities with constant pain .
I am the eldest sibling of 4. I moved in with mom (big mistake). None of them would have moved in and would not have taken care of her either. I am retired and am disabled.
I am sure your mom is depressed. I can't breathe and I panic, then become anxietied bad.
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