How do caregivers cope with the constant pain and exhaustion?

I would think that the enormous work and stress from working a full time job, while suffering with psoriatic arthritis and caring for a parent with dementia, would aggravate your condition. I can't imagine taking a family member with me to a job, especially one who has dementia. I wouldn't think that was possible. I would think that less stress and more time to focus on your health would be beneficial, but, I don't have that condition. I hope that you will get some responses from others in your situation.

Thank you so much , I have to work or we can't live . I have grief on top of it , I still can't believe my sister died it was sudden and she was 49 she and I were RNs together at the same hospital...I just deal with it but I wondered how others were doing ?

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.

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. 

12 hour shifts are rough but common in hospitals. Have you thought of doing home health nursing?

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.

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.

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.

I'm a bit confused as to how the OP inherited psoriatic arthritis from her uncle...

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.

I want to follow-up on my response and say that it will not be easy as I have been there but I didn't have any health issues. However, being a care manager was very stressful and after 6 years, it took a toll on my health. I hope you are reaching out to the Dept. of Health & Human Services for assistance.

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.

Hi,
I only read about your difficulty with your mother and your sister having passed.
We are going through EXACTLY the same thing.
I work full time. My sister passed suddenly at 47 which left both my parents in deep depression. My father had to VAC´s and is now totally dependant. My mother, who always had a difficult manipulative personality, is still functional but is in a deep depression and does practically nothing.
My brother lives in Canada. My sister lives in another village and only helps out on the weekends.
I live in their property so I'm the one dealing with everything practically alone. In the first couple of months we had no outside help and I was going down.
Eventually we hired two women who come to cook, clean, feed my father and do other house chores. We also hired home assistance for his higiene.
I can't believe you're all alone in such a humanly impossible mission.
We were lucky that my father has (until now) enough money to pay for all this even though, in his good years, he did everything in his power to keep it hidden from us.
Life is cruel.
Our sister was the youngest of four. Shortly after her 47 th birthday she was diagnosed of invasive, aggressive, stage 4 cancer. 7 weeks later she was gone.
She was an ex military, personal trainer, super health conscious, looked 30 at the most. Nobody expected this "monster" to get to her.
I hope you find a solution fast because you'll destroy yourself if you don't.
All the best.

Oh, my heart aches for you. I'm sorry, I have no advice on your medical condition, as a nurse, you have far more than probably any of the people here--but it sounds like this condition really takes it out of you....then you come home and take care of mom. You're probably getting no real rest, no downtime, no help----
From personal experience, caring for my hubby after liver cancer and a transplant, then a horrible post op infection THEN 84 weeks of chemo (oh and a stroke in there somewhere)---I did just lay down and "die" a lot of days. When he was able to go back to work FT, I went PT at 2 jobs. A troubled daughter and a foster son still at home. NOBODY helped me, or actually even offered. I tried to be so tough..and all I got in the end was a breakdown. It's been 8 years and I can honestly say I am not the same, or even that much better. I just burned up on re-entry, since I NEVER took time for 'me" and I allowed my hubby to treat me like his personal servant--a dynamic I'm still trying to get him to overcome.
Looking back, I SHOULD have
A: accepted and used in home nursing help (hubby didn't want anyone, so I just went along with him)
B: kicked the foster son out (he was a mooching 22 yo, and capable of living independently, but wormed his way into my heart.
C: kick out the belligerent daughter (again, totally capable of living independently)
D: taken a couple of hours for myself away from home each day to decompress and "forget".

I did none of those things and I completely regret fussing the hubs so much (he has NO memory of it anyway!!) and I ended up being labeled lazy AND high strung and other names, because I was up all night being the nurse, took brief naps on the LR couch and hubby told EVERYONE who came by that I was doing "nothing" for him.

You have a different set of circumstances, of course, but the outcome will be the same. You'll burn up. You'll be no good to ANYONE.

Seems like the consensus on this is to have mom placed and you try to regain your health. No doubt you will still be in mom's life for her, but you will be able to get a good night's sleep, rest, exercise and take some deep breaths.

All the best--be brave, but be mindful. If the caregiver gets sick, what then?

Ohmeowzer,
I am so sorry for the situation that you are in right now. I know very little about Psoriatic Arthritis, but suffering from Osteoarthritis/Chronic pain, I am able to have an understanding of your suffering.
First and foremost, I have learned that the caregiver must take care of him or herself. If your health goes down, you will not be able to care for your mom, but more importantly yourself.
As a nurse working at a hospital, Human Resources or Social Services would be the first place I would go to. They should be able to give you ideas on support groups for yourself, your mom's situation and how to get additional help right now. I know you probably do not want to place your mom in an assisted living facility, however as an Ombudsman for the State of New York, contact the office of aging in your state, for listings on facilities. They will be rated from one star to five stars, one star being the absolute worst facility, five star the best. Start there. Go to the facilities, have them give you a tour, meet with the head of Social Services, that can help you start the placement process, guide you in aid for funding. I will tell you, no matter what facility that you place your mom in, and I pray that you will do this, for the beginning of release of stress on you, that you will have to be pro active about her care. I have had to do this with my father and his sister, located in two separate facilities, and I will tell you, that I never let whether staff liked me or not be my guide for care, I stood firm and demanded quality care, and now the staff knows when I call, I mean business. I have gone to the President of both facilities many times, until they realized I was not about to relent when it came to quality care. I have seen how residents are treated as an Ombudsman, and I know what you can accomplish.
Take care of yourself, if you have friends or relatives who can help with mom then please involve them. At one point or another, Dementia will strike most families.
You will be in my prayers, and if you get a chance, let me know how you are doing, or how I might help you. God Bless...

Similar story. I am 49 work FT and have graves disease and RA. My Mom is 72 and late stage Lewy Body Dementia. I'm exhausted. Leaving the house and working is a pleasure,lol. Today was my birthday,and she didn't remember. She will be entering a NH shortly. I love her,but I should have placed her a long time ago. My emotional health is shot. I feel about 100. I hate that I took care of someone else so well and neglected me. My well being always comes last. Please start thinking about placing her. You and your health matter! And stress is terrible for anyone but for people with autoimmune diseases it's really bad. Please take care and a big hug sent 😊

Frankee218,
I read your response. First, Happy Birthday. I am sorry for your health situations, I know exactly how you feel. I have so many conditions, just the weight of bearing their pain is enough to make you think you cannot go on. Do it one moment at a time, and give yourself the chance to relax, cry if needed, but allow yourself to get rest.
We always feel obligated to stick by our loved ones, but as we reach out to help them, we suffer emotionally, physically and mentally. I know, my dad is 92, in a NH, paralyzed and on end of life care. I am his POA and Health Care Proxy, and promised I would stand by him right to the end, and not let him suffer. The problem became, his pain, his suffering became mine, and I have felt at moments where I could not handle one more moment. It took my health problems to a whole new level and I realized that I must take care of myself, because when the time comes, to make the final end of life decisions, I must be able to do so.
You must also. We can only help our loved ones so far, and we must realize that life and death are in the hands of God, not us. Do not allow guilt that you have not done enough grab hold of you, because it will.
Take care of yourself, get rest, and if other family members are involved allow them to help, or friends. My problem was that my family did not want to face dads impending death, and accused me of wanting him dead. This really messed up my head, but with counseling and faith, I am realizing, the problem belongs to them, not me. As our loved ones approach death, we the caregivers go through the stages of the dying process too. Denial, anger, the whole range of emotions, will be ours to face. But just know, you are not alone, and reach out to others to unload your pain and suffering. Good luck Frankee, do this one moment, one second at a time, and if I can help you, please let me know.

You can't deal with cg'ing 24/7. You must get reprieve at some point by asking a friend or relative to assist every now and then. You will be good to no one of you fall ill.

Catherine6,thank you for such a lovely response. You all "get it",unfortunately I suppose. Some of the things our loved ones say and do are horrifying to people lucky enough not to go through this. If anything,i learned that you must prepare for getting older when you're young. I pray I will never have this dreaded disease. Have a wonderful long weekend all!

Hi everyone I am new to this forum, but I thank God I have a place to listen and learn, and maybe even help...I have 2 elderly parents mom 80, dad 82. mom just had a stroke couple of months and is now home, not ambulatory on her own anymore...Dad end stage renal(dialysis) I do hemo dialysis for him at home. right now he is in rehab facility for a broken hip, recovering from surgery...this is the base for me, I am 61, and I am fighting everyday to keep my parents home...occupation therapist was a Godsend she taught me how to get my mom out of bed by myself...Please try, and i know this is not easy as you are working 12 hour shifts, plus taking care of your grandmother. I also like you can barely walk, stand up straight or just plain exhausted...PLEASE, PLEASE, REMEMBER THAT IF SOMETHING HAPPENS WHERE YOU CANNOT WALK OR MOVE FROM ALL THIS STRESS, WHO IS GOING TO TAKE CARE OF YOU, AND YOUR LOVED ONE...I constantly have to remind myself of this...You are the best! I have used respite care, it worked for a minute...I wish there was a network of students that maybe you could call on as a part of a internship to give relief to caregivers!...I believe the only people that will revolutionize this industry is the caregivers, for let's face it no one understands what we do... caregivers we are strong, beautiful, loving people, we need to band together and come up with solutions to help us get through the challenges. Power to the caregivers! much love to all of you!

ohmeowzer
My sister and I are in a similar situation! My sister lives beside my parents and I come over on weekends, but lately it has been causing me anxiety because my EXTREMELY stubborn, dictator, longterm neurotic, manipulative mother expects both of us to be here so she can walk all over us! She is always bitching that we got hired help! My father is 100% dependant with dementia & several strokes and the Queen is mean with severe depression for having lost her youngest daughter, but refuses any meds!
We also lost our lovely 47 year old, super fit sister to cancer which had already destroyed her liver when she was diagnosed; in 7 weeks she went from having an athlete´s figure to becoming a skeleton; I stayed with her, but things weren´t easy, & even though I was a nurse for 12 years and never witnessed a death, but I had to watch my little sister take her last 2 breaths after having screamed during her lAST night "Help me"...SHE HAD BECOMe unable to speak due to Fentanyl & no liver, but gathered all her strength to cry for help...how horrible is that!?
Anyway, my sister is now seing the reality of keeping the elders at home; she has always been adamant about it...my father has been hitting us & the helpers (punches, kicks, bites, scratches) for almost 1 year, and my mothe is the queen manipulator who throws horrendous fits to get her way...she has used these methods ever since I can remember!
Get your mom placed if you can because your condition will definitely detriorate...you have the right to your life too! We can´t live under the cloud of guilt!
My sister is finally seeing the reality especially now that my mother has decided that she´s to be treated like a Queen...my father is pretty terminal now and doesn´t have enough strength to hurt us, but still tries!
All the best to all those in this situation!

1) with all your health issues, do you need to ask how 'anyone else is doing'? LOUSY. I went through it for 2-3 years and lost years out of my life from stress and overwork. All alone, of course. 2) you should get some counselling for your grief, I am so sorry about your sister. You might need some medication or therapy, please look into it, you have a ways to go yet in your life. 3) Once they have dementia, or are bed-ridden, or walk from their recliner (in front of Judge Judy, and The View and such all day) to the toilet and back - they will be as happy in a nursing home as anywhere else. Time to start looking into placement in a facility, I hope you have all the paperwork in order for Medicaid. Good luck, dear. Time to take care of yourself.

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.

I wish I had some advice but with caregiving, there are no easy answers. All can say is somehow try to get a break for yourself. If you can afford it, could you place mom in respite care for a week to give yourself a break?

As a nurse, you know about the studies on how caregivers health is worse than non caregivers... and sometimes the caregiver dies first, especially with dementia caregivers. As it progresses, the reality is that eventually you will probably have to place her.

Before I had to take care of my mother, who has mobility issues and some mild vascular dementia, my health was perfect. Now I'm on two meds for hypertension, my migraines are much more frequent and intense, and I used to get one cold every five or six years and in the past few months I've been sick a lot. It's the stress. Caregiving is brutal.

Please somehow get a break for yourself. You need and deserve it.

I empathize with your situation and recognize that you are an extremely responsible daughter. That being said, I echo what others have offered:
it could be overdue for you to talk with some social workers and/or consider the following: adult day care for your mom (and then some late night care at home by a paid person), or memory care in a facility. That way, you can visit and enjoy time with your mom but get some rest in your own home as well. Good luck to you...your health needs now immediate attention and I hope you'll consider yourself, too.