How do caregivers cope with the constant pain and exhaustion?

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I have severe Psoriatic arthritis,I inherited it from my uncle Doug who is now on daily dialysis because of the autoimmune effects of it. I am on the methotrexate and iv remicaid with solumederol prior to the remicaid. I work as a RN and take care of my mom alone since my sister died 3 years ago. How do caregivers cope with the constant pain and exhaustion..I just barely make it some days through a 12 hour shift then I come home and take care of my 80 year old mom with alzehemiers and dementia...my mom has a caregiver when I work ,,some days I can barely walk and I'm 54 years old not married no kids , just my kitty Fiona ...have any caregiver's health declined with Psoriatic arthritis while taking care of their parents? ...I give mom the best of care and I oversee all her meds and dr's appointments and she always goes to my hospital where I work so I can keep an eye on her care so even when I'm at work I'm working with her . I love my mom she was a wonderful mom to my brother ( who dosent help at all) and my sister who passed away 3 years ago ..I was very blessed with a great mom who was a nurse and she deserves the best ....I just wanted to know if your health has declined ? I sure miss my sister we both were nurses at the same Hosp and now it's lonely doing it all myself I have had a rough grieving 3 years of heck and missing her she was my rock ..anyway thank you in advance and any Psoriatic Arthritis tips when care giving is very helpful and thank you

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Is it time to place your mom in a memory care facility? The Alzheimer's disease only gets worse and the care will be even more stressful. If you have health issues, then you need to start looking for a facility or hire assistance in the evening.
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Ohmeowzer, My heart goes out to you. Please talk to a social worker and counselors at the hospital where you work. You need help NOW! Please do not delay because your situation will continue to deteriorate. Have you ever thought what would happen to your mother if you became too ill to care for her? Your love for your mom is admirable and understandable. So is your need to be responsible for her care. God bless you both. However, you are so exhausted and emotionally drained you cannot see the forest through all those trees. And, even if you did, you would look for more trees. Please, for your mother's sake and your future, seek professional guidance. Seems it may be time to put your mom in a memory care facility that will love and care for her. Perhaps not like you do, but it is time for acceptance and to 'let go' and enjoy life. Hospitals have a wealth of information on placement for Alzheimer's and dementia care patients. Please reach out, let others help, love and visit your mom while others attend to her needs. You deserve happiness and peace of mind. Life is too short Ohmeowzer. Embrace life, be strong and look for enjoyable and grateful moments. It's time, my dear, to share your life with a wonderful world out there.
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How do 'we' cope with constant pain and full-time caregiving? To be honest after awhile you just can't. Since you're a nurse and have an auto-immune disease you know that all of this constant stress will really hit you hard. Stress is well-known to aggravate any pain and auto-immune disease. I know you want to do as much as you can for your parent but PLEASE be gentle on yourself and take care of you! If you don't you will only get worse and not be able to help you or your mom. I think you should really consider AL or memory care for your mom. Please don't let guilt come into this, you have done a wonderful job under very hard conditions. Blessings to you, Lindaz.
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12 hour shifts are rough but common in hospitals. Have you thought of doing home health nursing?
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My life the last ten years bear quite a resemblance to your life, but for the chronic illness. My brother died in California while I was taking care of Mom in the NE and I had to handle that situation long-distance. My other brother has nothing to do with us.  I had a career with extremely long hours but had to give it up by the time I was 60 because I only could only spare two hours a day to sleep, and even that went on until I started to hallucinate.   I was a small, healthy, strong mid-fifty-ish woman whose health was worn down in those ten years; recovery from the wear on my body took two years. The bursa behind my right knee can still be easily injured such that I cannot extend my leg straight for a week, but at least my knee now seats properly and I don't have to be dragged up the stairs by my husband. Four-and-a-half years ago I was able to transition Mom into memory care which was much better for both of us. With all of the physical work required of me, I was not able to be the daughter, and Mom thought I was the servant. Now I am running (or limping) after a three-year-old grandchild, and Mom is in her last month. It is never enough, is it? We are constant, caring, loving, always-exhausted, but giving no matter how we feel. I am facing the completion of my Mother's life and thinking of the times that my body was exhausted or failed to perform, wishing I could have done more, but knowing that it was not possible. It helps that I have my husband to remind me of what I did give. I think you need to make a major change to preserve some measure of your own health. I hope that there is a way for you to do that.
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Is there a way you can get respite care where you can have a few days rest and take care of yourself? Maybe call the agency of aging and see what programs around you are available, there may be some sort of help out there? It may be time for her to move to a care facility. You need to take care of yourself and get some help somehow. I am sure your mom wouldn't want this all on you. My mom is at a nursing home for physical issues and it's very hard on all of us but I've had to let go of he guilt because there is just no way i could care for her in our circumstance. 
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I would definitely explore placement for your mom. Nursing is a very stressful and labor intensive job. To handle it with a serious medical condition and then go home and provide care for a person with advanced dementia is really extreme, imo. I have read that the rate of caregivers who die before their infirmed loved one does is startling. When your body is screaming at you, listen. I leaned the hard way.

When my LO was first diagnosed with dementia, I ran my own business and was trying to take care of her needs. It was a period of extreme stress and exhaustion. I lost over 25 pounds in a short time, had skin conditions, and was not able to sleep. I had dental problems, stomach problems and back problems. Her doctor said she needed AL and I agreed. You can only do so much. It took me a year to get my health back on track.

I'd try to address your own health needs. After my LO was placed, I was then able to go visit her and be the loving cousin that I wanted to be, because I was able to sleep and get rested. I actually began to look forward to seeing her as a healthier and happier cousin.
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Oh, so typical...those who suggest placement (when you probably never want to do that out of love and obligation), or the "you need to get away/respite" which, if you can afford...still leave you thinking about your loved one and what you can look forward to returning to. No answers from me...but remember: if you don't take care of yourself, there will be no one to look after mom, and the worst case (placement) will become more of a reality. I agree with touching base with those you have connections with under your work roof: the social workers there should be familiar with local resources. You already have a caregiver coming in...any chance to line that one or another up to guarantee you some time off regularly? What causes you the most stress? If it's housecleaning get someone in to do that if you can afford it...hire someone to grocery shop if that helps...or someone to be with her while you go out to do it...So many of us are struggling with caregiving issues, but not with the additional weight of grieving and illness. I so hope some relief can come your way. I could so easily be in your shoes. For now I take it one day at a time and am grateful things are not worse.
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Faced with a similar situation, I placed my husband, who has Lewy Body Dementia with Parkisons, in a nursing home. It's close to home, so I can pop in and out, maybe share a meal, help him get up or ready for bed, take him out for ice cream or a ride to the park. He was placed, because we both wound up in the hospital, me from extreme sleep deprivation, him from insomnia and extreme anxiety. Now, with professional help and the correct medical therapy, I can work, get rest, take a break. He gets compassionate and care, but I remain a strong advocate, learning as much as I can about this insidious disease and how to treat it - and directing my care team how to best help him, rather than trying to do it all myself. I felt guilty at first for having to place him, but after realizing the improvement in health of both of us, know it was a good decision.
You are a nurse. You should be able to advocate for medical care.
Another suggestion - if you have PACE or a similar program in your area, or even adult Day Care, you might want to look into that. On your off (non-shirft) time, you could sleep, have respite, just have quiet time, and someone else would care for her.
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Yes, ten years of caregiving definitely impacted my health. Being constantly "on" is very wearing. I remember feeling so exhausted I couldn't change into sleepwear, but fell into bed clothed. Or pulling up to the house after work, parking, then falling asleep before I could get out of the car. It's 18 months since she passed, and I am only JUST NOW getting back ANY energy, sense of rejuvenation, and normal emotional feelings. My doctor said that stress burns up all your b vitamins, so I'm on a strong b supplement and had a big shift for the better when I got acupuncture recently. Exhaustion and stress changes everything in your life. My best advice to all my friends who want to keep their parent home: think of yourself as the Administrator, you are the Manager -- NOT the laborer. Find help and delegate and oversee the labor of changing, cleaning, washing an adult's body, but don't DO that physical work yourself (I know -- I DID it and it almost killed me.) For me it was more cost-effective to hire people I knew -- aides-in-training, or even teens - since I was there to oversee everything, that was better for me than the professional home services who came with all their requirements, hierarchy, and hassles. / Remember you are the Manager. Figure out managerially, how best to meet your own needs -- meaning keeping yourself healthy and NOT depleted! -- as well as accomplishing the kind of care you want for your dear Mother.
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