Caregiving with a chronic illness. How do you handle it?

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I am a live in caregiver to my mom...i have fibromyalgia and worked 8 hours yesterday and without a narcotic would have been bedridden all day.

We hire an agency to help out and that gives me time to rest. If we couldn't afford it, mom would be in a facility by now.

So what is your story and how do you find time to take care of yourself?

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Living south the only thing you can do in this situation is to stop enabling the elder and let the unkind comments run off your back.
hiring someone is an excellent solution as having cleaners come in too. Just stop doing it and ignore her.I know I am not the one in your shoes listening to the one you should be cherished by trashing you. If you can talk to a therapist to learn some coping skills and share your health problems. you are correct older (& younger) people do want to share their own health and other problems but it has to be a give and take. Many caregivers on this site do have their own problems which they share but it does make them more empathetic towards the other posters. I am an elderly person (76) and do like some support but am willing to share things that I think can help others. as far as your Mom is concerned if you feel ill go to bed and stay there and when she comes in just say "What part of me being sick don't you understand? There is a frozen dinner in the freezer pop it in the microwave and you will have dinner in ten minutes and leave me alone"
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I have driven my mother to appointments when I had to turn the air conditioner on full blast just to stay awake. I had the flu last month and she wanted me to take her to the store so she could get her hair color. I just shook my head and walked out of the room. Last time I had surgery, my mother wanted to know if I had life insurance ( I don't ) and what would happen to her if I didn't come out of the surgery. Once, I had a psychic tell me that my mom had been my employer in a previous life! The other day she starting in on me again, and my father ( who normally sits meekly by) actually told her to call another family member - and he told her that she didn't care whether she ruined my health or not.

I am planning to hire someone to do some of the errands. I will be using her money. She will not allow anyone in to do housecleaning. In the past, I was out doing yard work only a few days after surgery.

Sometimes I wonder how I came to be in this family, but I know that it could have been worse. My father is more understanding, but my mother was baby of the family and wants someone to boss around. She complains about ME being 'hardhearted' by the way.

EVERY elderly person I know complains about their health problems, that they have had since they were over seventy, but they couldn't care less about teens or adults who have chronic illnesses. It's like it doesn't 'count' since you are younger than they are. Another older family member only calls me when they want me to hear their problems, and they 'hear the doorbell' when I mention any problems.

I really have found out, since I joined this site, that whatever you are going through, someone else is also going through it, or has in the past, and it's very comforting to know that you are not abnormal, after all! (Sorry about all the venting)
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I fight for every hour of personal care, respite, etc. I found one good worker and two others that are good enough--they don't steal or hurt my mom. I found a great program that allows me to manage the medicaid budget-so I set the rate of pay at $10 hour which allows me more hours of care and the workers are happy to be making that rate and no gency pockets the difference. The program use to be called consumer directed care in Florida, now it is thru an HMO and it is called PDO-- participant directed care. This program also allows a family member to be paid for caregiving--I do not use it because I am stage 4 breast cancer. My 10 year old is autistic and he is also finally on the medicaid waiver services in Florida which offers the same program for him--allows you to save funds for treatments and summer camps that are not covered by medicaid. My husband and I also see the same doctors as my parents or we would never see a doctor. So we double book appointments and a lot less explaining of our situation. My dad now has mets to liver and my hubbie has heart failure. I call it extreme caregiving.
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LivingSouth, I'm sorry life has put so much on your plate. I sounds as though you could really use some help and support. Being in physical pain is a difficult thing to convey to others. It doesn't show outwardly and until you are absolutely at your limit and lose it (ie: crying or shouting) no one can tell any different. I'm very sorry that this results in shouting matches and unpleasantness between you and your mom. She doesn't sound capable of understanding what you go through on a daily basis. Have you tried talking to her when things aren't so bad? If not you might try that and maybe she would cut you some slack- but this can only happen if she knows you're in pain or exhausted, etc. Please don't wait until you're about to drop dead on the floor before you say anything either. She will never read your thoughts so it's up to you to let her in on what you're feeling. She might even respond better to being made aware and being considered part of your "caregiving team". If she used to be a caring mom before her illnesses changed her, tap into that aspect of her personality. See what you can uncover and she may surprise you.
Regardless of whether she responds positively or not, you must take care of your health, spiritual and mental needs. Ultimately, you are the only one that can. It is critical for you to find some support even if the COA is not helpful. Maybe there is a local caregivers class or support group you could join. If not, then maybe there is one for the illnesses you have. Either way, please know that there are people who care about you on this site. You can always get on and share your troubles or struggles from daily life. We also love hearing about good news too! If one of us has some success with something it's amazing how much it can cheer up the rest of us. That's priceless to me. So stay connected and do your best to stay positive. Sometimes it helps just to vent a little. Take care!
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I had a stroke in November 2014, how do I handle it, believe me with tremendous amount of difficulty, but my love for my wife somehow pulls me through the day.
Just hope there is a creator to help you through the day, and hope that we both will live to see another day and still have each other.
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LivingSouth, ah there are times I think my parents will also outlive me. My caregiving has been being my parents *wheels* for the past six years as they are still able to live on their own without any other help.

My health has also gotten worse. Now anytime my Dad calls me [Mom is almost deaf due to age related decline] I can feel my voice tense up to a point when it is becoming difficult for me to talk :(

Back in October I had to cut back 90% of the driving because I was getting major panic attacks while behind the wheel. My Dad thinks it's an easy fix, but you can fix something that has been going on for six years, the panic starting at first to be minor and each year getting worse and worse. I kept telling my parents I don't like driving but it was my fault for still driving them, forcing myself through the panic. I spoiled them. Now Dad [93] is throwing out the guilt saying he's going to start driving again.... [sigh].
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I have multiple health problems, Fibro and CFIDS, arthritis, and actually think my parents might outlive me. I live in, and luckily my mother can still do some housework, and my father helps as he can. There are some days when I cannot do what I need to, and I have gotten into shouting matches with my mother, who seems to think that I can drive when I am in a lot of pain or dizzy. I do have siblings who help some, but the majority still falls on me. My health has gotten worse, and our area COA has a long waiting list of people looking for elder assistance. I just had my first physical since 2005, and I try to take it day today, but the little things get to me - the constant home repairs or the paperwork ( since my parents never ready anything that comes in the mail). The refrigerator went out last week and now the washer and dryer...
I know the constant stress is only making me feel worse. Still we do have a roof over our heads and enough food - which is more than some people in our area have.
Because of my health condition, I have had to give up the part time work that I was doing so I have a very small income. I really miss being able to feel somewhat productive, and the isolation is very hard for me. I feel like a ghost.
I just wish that people cared about my well being and would actually ask sincerely, about how I am doing.
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Although I love my father dearly and he is sweet and fairly easy to deal with, I am looking for placement for him, after 3 years. I am single and working as a nurse at a hospital. I feel trapped because it is really exhausting to take him out anymore. I am tired of having caregivers in my home and not having any freedom or privacy. I am tired of dealing with payroll, the veterans are a major hassle, and I'm afraid I'm going to lose my job due to burnout. I am 72. When he was 72, he was already retired for 10 years. I'm gaining weight, I'm not getting much exercise, I eat junk because he loves sweets, so sweets are always in my face. I'm resentful. Not feeling very well is my "new normal". I fear that he will outlive me. I have lost my footing. I want my life back and I want him to have good care. I'm spending every spare moment surveying the possibilities for him. It's not like I'm abandoning him. I expect I will be visiting him daily. But at least I can then go home to my own space. And I can visit my sons and grandchildren and go to seminars, maybe even a vacation.

It takes a village, and I have come to realize that I can no longer do it all by myself.
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I have severe depression. Three suicide attempts and years of medication and therapy. My narcissist dad .... 91 years old.....became ill and the VA social worker would not allow him to be released to live on his own. Thank God our youngest son and grandson had moved in with us taking extra bedrooms. I had no choice but to find a nursing home. After a lengthy waiting period, dad finally was able to transfer to a veteran's home. It's a wonderful place. Dad would ask me if our son was still living here. I knew he was thinking he could move in if they left. Since dad lived with us when he moved back into this area, I knew there was no way I could keep my sanity if that happened again. Dad came to believe this was HIS house. Took over and we had to walk on eggshells around him. Had our son and grandson not lived here, I would have felt guilty and took Dad in....my sanity and marriage would have suffered. Caring for parents that have been loving throughout your life is also difficult but a narcissist, self absorbed parent is impossible. I suffer no guilt placing dad in a nursing home.
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I can relate to most of the folks who responded here. I have Addison's disease, asthma, and compartment syndrome. My dear mom was the perfect mom growing up (really, she was). She took care of her mom, her aunt and her disabled daughter. Plus she raised five kids while working full time as an RN. Now.. I'm my mother's daughter... I'm running around taking both my parents to their doctor appts (which is many!), make sure both their medical paperwork is order and their extensive med list is updated (in addition to taking care of their household because they want to die in their house) :-(

I took my sick husband to the doctor this week and thought while I was there I should schedule my annual physical, which I was SHOCKED to learn I have not had since 2012! When I started caring for my mom (my dad's care after that).

Easier said than done, but we have to take care of ourselves or we aren't any good to anyone else. I'm guilty of not practicing this, but trying to get better about it.
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