How do caregivers cope with the constant pain and exhaustion?
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
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.
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.
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.
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?
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...
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.
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!
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.
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.