I'm 58. Used to be healthy, happy and
very active. Took care of step dad(was killing mom). Now mom for 10 years'7 living in my house. Things are getting bad . Mom just wants to lay, eat and poop. She digs it out and stuffs it everywhere. Her pillow case, behind her bed, drawers, wastebasket. she is up and down eating all the time. Weighs only 114 lbs. I have gotten ibs, gerd,asthma, rhinitis, copd,sinus impaction(all sinus cavities-need surgery and now they think RA. Limp, terrible pain in hips on down, neck-shoulders. Plus much abdominal pain. All from stress. All i get done is washing sheets, blankets and poopey clothes. She wears depends but will dig out and stuff. We r very close, I never scold just take it a smile on my face. No help from family. Yesterday I had her in tub to wash poop off she was demanding my immediate attention when I was trying to change sheet
I told her if she didn't move more the ER doc said she would have to go to nursing home. She said "no. Way Hosa". Im stuck at home and would want to die except my worthless brother that has had no contact would inherit the little she does have and spend on his delerick kids. He hasn't seen or called in appx 10 years when she stopped paying his mtg. At least I have a wonderful loving Hus
Band......now the question. Can her getting poop on things like door handles ( I have cleaning gal and wash constantly) but still know there are germs left be making me sick or is it just stress? I am so stressed out I was washing something at the sink and I just started peeing my pants, until I realized you just don't do that. Afraid I'd getting ready to strike out. So so sorry, so long,
I can hear your pain and distress just leap off the page!
If you have not already done it, you might apply for Social Sec. Disability.
?Though, at your age, they might make it SSI--more like early retirement for health reasons.
Part of that depends on how much you have worked int eh past [regular employment/income].
Stress can make illnesses worse, it can also trigger illnesses.
The best remedy is to resolve what is causing the worst stress.
IF one cannot do that [sometimes it happens], then find ways to help relieve the stress at least sometimes, and find ways to help yourself cope better...better coping skills can be learned, even at our ages!
Fibromyalgia [FMS] [or CFS, too] alone, does not usually qualify for SSDI.
HOWEVER, when combined with other qualifying diagnoses,
and depending on what symptoms and impairments are happening,
it CAN qualify under SSDI rules.
I know, because it did for me.
If a collection of "smaller" [?!?] diagnoses exist, and so impairs a person as to keep them from earning a living [that's approximately $700 per month] regularly, then they usually do qualify.
It might take the average 2 "turn-down" letters, then a court date.
OR, if you have a really good advocate or collection of Docs willing to write just the right words into letters to document your conditions, it can go through very fast--like immediately or a few months.
Depends on the conditions and the documentation--and the applicant's persistence!
A good number of your diagnoses could qualify alone, depending on severity.
But lumped together on the application, should push your case through to get SSDI benefits.
Sometimes we cannot count on relatives to give any relief.
I have learned it is of no good use to stew over dysfunctional relatives--they are as they are. But I gradually discovered there are agencies and people that can help--even a little.
Each regional area has various resources--we just have to find them.
A local hospital advocacy person, a Social Worker, a Crisis Line, can all start pointing people in need, in a better direction.
I truly hope you find help before things get worse!
{{{hugs!}}}
I have written out some guidelines which helped me. I am happy to share them with you, or anyone else reading.. If you have any questions òr comments don`t hesitate to contact me, or just post here. I will be watching...
My Experience with Healing from Fibromyalgia
1. Reduce stress. Whatever was causing emotional or physical stress in my life, I got rid of. I was quite ruthless in this. Also I avoid extremes as much as possible - heat, activities, emotions, - anything I found stressful.
2. Resolve any ongoing tensions – I go to counselling if necessary. Any tension makes it worse. I know someone who was in a wheel chair from CFS/FM, who, after she went for counselling re her alcoholic dad, improved greatly and didn't need the wheel chair any more.
3.Infections = I had candida and sinus infections for years, was not given proper treatment, and I believe the candida contributed to the CFS/FM, as well as flaring into a systemic form two years ago which is very serious, (40-45% mortality). I tried all the natural remedies but they did not do the trick. (They may for others, but did not for me) I am on prescribed meds, and getting better. I use a peroxide rinse for my sinuses which keeps them healthy.
4. Gentle exercise, as I could tolerate it. Walking is good, also just moving as you do around the house, but not to the point that you tire.
5. Healthy diet – may differ from one individual to another, but low carb to begin with seems to help many. For several months I ate no simple carbs - no sugars, few fruits and grains in general, no honey, syrups etc. I did eat good quality protein, non-starchy veg’s, and find I have to protein with every meal. I avoid processed food, preservatives, additives, artificial sweeteners etc. as much as possible, Stevia seems to be OK. I eat mainly for nutrition; but have some healthy "treats". Caffeine affects me more than it did so I don’t take much. I found I am allergic to wheat (gluten) and dairy as well as being lactose intolerant.
6. Sleep -adequate sleep. I found this one very difficult, as I would wake up after 4-5 hrs. I sleep in the daytime if I feel like it, as I know I need more than 5 hrs.
7. Rest - I listen to my body, and rest when I ache, am exhausted, rest until I feel better. Sometimes that is a lot of rest.
8.The 50% solution – if I feel I have energy, I use 50% to do what I want to, and leave the other 50% for healing. I did this for a number of years as I had lost my second wind. I seem to be ab le to do more now.
9. Supplements – the ones that help and I have tried many such as vitamin supplements, Co Q10; carnitine, adrenal extract etc.
10. Read – with brain fog I could not read as I did, but still have gathered much information about the above. Each of us is a little different, so applying these guidelines may differ from one to another¸.
I learned to be patient and persistent –this condition did not develop overnight, and did not go away overnight. I am greatly improved from what I was, though I still have to be careful. I think you can improve greatly too. I am 75 and better than I have been in years.
I think it is wise to get a thorough medical to rule out or treat any conditions like thyroid imbalance, pre-diabetes, diabetes, high blood pressure etc. For example my thyroid level jump around and affect my energy. I monitor them every couple of months and my dose get changes as needed.
I am very happy to act as a resource to you or anyone else who wants to heal from this condition. Sometimes dealing with one thing at a time is possible, while trying to change too many things becomes impossible. You know yourself best.
Good luck
Love, hugs, and prayera ♥♥♥
Joan
What did you do to get your health back?
I am sending you a million blessings; and a million more to your dad too. You don't owe anyone an apology and you might be over sensitive to things said on this thread. I don't think you are being ganged up on, but I know I have taken things that way myself in the 9 plus months I've been here. Sometimes posts just fly and it's easy to misinterpret just who is talking to who.
I so respect all you have done for your dad and have appreciated reading all of his posts. What an amazing man he is and, as far as you are concerned, the apple didn't fall far from the tree. You are a shining star, filled with love for your dad and lighting his path. Makes me think of his comment about Nova.
It sounds like things are moving faster than expected now. Maybe that's a blessing for Meno. Someone told me, it might have been my husband, that even though you know the end is coming it is still a shock when it happens.
I am keeping you, Meno and your family in my prayers. I'm sorry about your brother. I think it's hard for men. Maybe easier to not be so invested and watch someone pass. Your mom was in Hospice so maybe he is wondering why dad isn't. Who knows, but you have been there for your dad and that's what is important to you both. What an amazing communication you have had during his last months. Really, it is exceptional.
I am sending you lots of love, prayers and comfort. Same to your dad. Please know we are all thinking of you and sending love. Hugs, Cattails
golf - I would hate to see you get any worse that you are now. It has been a long trip back for me, and some of that was learning how to remove stress from my life, and also how to pace myself. I was 56 when I was diagnosed.
ruth, i am sorry you feel ganged up on. Each of us has a contribution, and we do have different opinions, knowledge and experience, and that's OK. Your contributions here are valued, as are most others. Your brother's comment must have been very hurtful.
Stress,
Lack of exercise,
Anxiety,
Depression,
Lack of sleep or sleep disturbances,
Trauma,
Extremes of temperature and/ or humidity,
Infectious illness.
PLEASE get help caring for your elder [a facility of some level]!
While the symptoms you have so far described could point to bowel issues with alternating constipation and runs, which a Doc might help with meds, or you could help with daily fiber servings, if you are not interested in my suggestion of using chia seeds in juice daily [it's still fiber and nutritional content, just natural], she is likely going to keep having that problem to some degree.
It will weigh on you, and disrupt any try for a bit of your own life.
When a caretaker's health is faltering, care-taking has taken too great a toll!
One simply needs to take care of your head-to-toe health needs.
IT sounds like you are solidly into that realm of needing serious help--the kind who cannot back out at the last minute.
Since she has funds/coverage, nursing home should not be a problem
--or you could MAY look at an "Assisted Living" portion of some nursing homes, which are more like "home" and elders can have familiar furnishings around them. OR a "Care home" where just a few persons are cared for in a very home-like setting.
Please get real help and fast!
IT is common for a person under extreme stress, to get a sense of
"gosh! I feel so much better just by talking with people who understand it"
or "Gosh, I took a tiny pro-active step to call some job lines--now I know there is a job I COULD go for, besides this hellish one I thought I was stuck in"
---and think
" I feel better because of doing those small things--maybe I was making a mountain out of a molehill--I was just tired," or whatever excuse .
NO!!
Making those kinds of excuses allows the situation to keep going unchecked, and you will almost immediately find yourself back where you started--except now you have people rooting for your success at finding help.
Please get your elder into a facility--assisted living, nursing home, board and care home---but out of your home.
What you have described is you needing her OUT of your home, so you can heal you.
You cannot heal you, if she is still in the house, calling on you, in the slightest.
Your personal condition has become dire,
and
while it might buy a tiny bit of time to have someone come into your home to do the care, unless you can totally shut off that part of the house, you now have your elder, as well as all the [24/7] care-givers traipsing in and out, asking you for input on what's the best way to do something, or telling you your elder cannot be happy unless you personally take care of something. Or they fail to show up.
Your condition has gone too far for in-home help to do enough for long enough.
Please find some level of facility to take over care of your loved one!
{{{hugs!}}}
Chi
.
The question was can it cause Fibromyalgia and the answer is NO IT CANNOT.cause fibromyalgia. It can cause depression which is a bona-fide-recognized by the AMA and any Psychiatrist as a disability worthy of a claim for Social Security. I said in my post that you addressed that some people can handle being a caregiver and some people can't. But no one should feel guilty if they reached the point that they can't. If I didn't put it in that post I put it in others or insinuated it. I also listed ways to make caregiving easier. I will say this. Anyone who has reached the end of their rope should get out of care giving altogether and let the professional care giver take charge and not feel a wit of guilt. MOMMAG.
you cannot do it alone You did not hurt me in any way and I never intended to hurt you. Where did I say it was your obligation to keep her to the end? I said I would keep my dad thru the crap and the cleaning to the end unless he ever became violent. Your pain is not my pain and it sounds like you have suffered far too long.
I would never expect my children to spend 30 years taking care of me or anyone else unless it was their vocation and they got paid to do it. If I cannot speak my mind without being ganged up on then why post at all? I feel we owe our parents a dignified life be it in our home or a nursing home Hospice whatever. I see alot of
elderly being cared for by their children and getting paid for it. I have friends who has an elder living in their homes and see them being ignored more than not. Meno has had an occasional mishap-one time he sneezed and the crap went everywhere . One incident and it wouldn't have gone everywhere had he been covered but I had just bathed him and sent him in the room to get dressed and the phone rang and I forgot him standing in his room in his birthday suit. I freaked out so cleaned him up, dressed him, cleaned the baseboards and decided to paint his room with waterproof paint-got cheap carpet to throw over the balcony and wash it outdoors for any future events. If Meno dug waste and filled pillow cases and slung it on the walls I would most likely throw in the towel. I actually never for a second believed that post was a real every day occurrence. Never would I put up with that on a daily basis-EVER! But having said that I could never put my dad or a child or my grandparents in a home simply because they were inconvenient and Meno is beginning to talk to himself and rock-I don't care-he's my dad and I have not reached the point yet to throw in the towel and I can't say I never will but doubtful since his doctors told me late yesterday he will not be with me much longer as his ejection fraction has dropped and we all agreed not to put him through surgery for a pacemaker, more O2 pumps-tanks, etc. Pain medications are cardio-toxins and his heart is a ball of mush his dr said-O2 levels on 5 setting is 86 and his heart cannot keep up. So I dson't have to throw in the towel... he is. I resent someone taking what I say out of context and speaking for someone else. Mommamag-direct to you I feel your pain. I have siblings who let me down. Last Veterans day my baby brother came all the way from Palmer, Alaska to attend my dads VFW ceremony and afterwards he and me and my other siblings and dad went for lunch. Sissy he said, I don't know how you do it. I said I do it because I love him and if it was you I'd do it for you and he said no, I mean how can you be so selfish? You deny us, you deny your own children taking care of a vegetable that can speak.
Put him in a nursing home and come back to your family! I was in shock. We have not spoken since that day but sometimes I think he is right and when I feel that way all I have to do is look at Meno playing with his treasures that mean nothing to anyone except him and know I did the right thing. Whatsoever you do to the least of our brothers that you do unto me...
As my mom has declined over the last year, she doesn't get up on her own anymore and I have complete control over the bathroom activities. Everything happens in the toilet now except for wetting her depends in bed....You will feel better when things are more calm around you. Your pain and stress is not permanent...maybe you will have a bit of shell shock, but you can feel better if you get things under control, eat right, exercise or dance a bit, grow some plants, string some beads, make a beautiful salad to eat, read a book, talk to some friends or neighbors and of course try to set up some respite care for your mom. Try and remember some things that you used to love to do before you were entrenched in this care giving role and find a way to do them. You deserve to treat yourself with love and compassion without feeling guilty. Hugs to you.
But, golf's health is suffering. Re fibromyalgia - of course you cannot catch it - it is not a contagious disease, according to current understanding of the condition, and that was not golf's question. Is stress a contributing factor in developing or triggering this condition - quite likely. Does stress exacerbate it - yes, Can the stress of years of caregiving make you physically and emotional ill? Definitely! I hear you about nursing home horror stories, yet, according to reports here, there are nursing homes which do a good job. If anyone decides to go that route, they have to screen the homes available, and visit to see how well their charge is doing. It does not mean all nursing homes abuse their patients, and I hate to think that people would be turned from considering that alternative.
((((((golf))))) thinking of you today, and all you have on your plate. I know the pain of losing dear friends. Please look after you.
My dad lost half of his brain and I think it was because half of him is with her. Only one thing would make me put him in a Nursing home or a Hospice-that is if he turned violent and a danger to my children or I died myself. He can crap all over me, the walls and I already had the walls painted so meno can draw or color on them and I have carpet that I can take out and clean and while it is drying I put another in that stays rolled up in the closet. I child proofed his room and cabinets and have the house filled with alarms for when he goes on his night runs I call them-sleep walks or shuffles. I put him in a VA nursing facility and he came home with two dislocated shoulders and ruptured discs because he says the water hurts him and someone forced-dragged him to the shower by his arms-pulled him out of bed and cracked his back on the floor and head that he had 3 surgeries on. Because they thought he was malingering and some lazy jerk had a job hwere he thought he was Mr. Tough man. I myself witnessed an elderlady laying on the floor of her hospital room crying for help while 4 nurses were chatting at the nurses station-I ran to them and said can't you hear her? They said oh, she's just wanting her pain meds and it's too soon-I walked in front of her room and pushed open the door and this poor woman was on the floor-somehow she got our of her restraints and was on the floor! she had to have fallen out. I told the womans daughter and believe me hell was raised and I was hated by the nurses after that but a month later I got a card from the daughter and the mother and 6 months after that I was at a hearing and four nurses were fired and the hospital settled for an undisclosed amount. The elderly lady remembered and I will never forget it either And her daughter stays and helps me out for a few hours ever so often with dad. Being a caregiver is a nasty dirty heart wrenching job at best. Some people can do it some can't. I can and will not let a little or alot of crap stop me from making the person responsible for bringing me into this world as happy and as comfortable as I can. My children help out as well. My oldest son is in FFA and he cleans pigs covered in crap all the time. Thankfully because of dads diet he has few hard to manage accidents but I had to research proper diet-on the internet and at book stores-now he has a feeding tube inserted and I have to clean that wound to keep infection down-we wear gloves-we have two air sanitizers in his room-I steam clean his mattress-sheets are sent to the laundry and besides adult diapers I have a large supply of cotton diapers so he can lay on those and air out so he doesn't get bed sores. He also has sheepskins-yes, alot of expense but he would not get the care I give him in a Hospice-I know I watched my mother die in one and I made surprise night visits and more than once caught her with dried fesces on her bottom and legs. I know they called me the Bitc# woman from hell behind my back...and I was and I am. I think caring for my dad has made me grow up-all the way. I study how eastern cultures treat their aged elders with great respect and most would never consider putting their parents and grandparents away. An elder is considered the hub of a family regardless. They are washed and cleaned and fawned over like royalty-it is customary. They are manicured and pedicured and no one bats an eye to their gibberish-it to them is a mantra-the elder is speaking with the angels.
I specifically asked a specialist: Can you catch Fibromyalgia from caring for a elderly person who poops everywhere-answer-NO! You can get yeast and fungal infections, eye infections and possibly Hepatitis A&B if the patient has those conditions already but one should always use sterile technique and Hibiclens and lots of hand washing and the patient must be massaged and aired out and their sheets must be crisp and no creases if they are bedridden and clorox and Pin-Sol should not be used around them as it is toxic-lysol also is highly poisonus. Sorry for my rant-I just love my dad. I never knew how much until this happened and whats a life worth? Medicare can stick it where the sun don't shine for all I care.
I make sure every penny of his retirement is spent on his care. Folks-make sure you keep your receipts How the heck is that spelled-ha,ha-getting punchy from typing-I end up spending more on him than he gets and I will not beg for help from medicaid because then they would want to take our home. I was on the fence about this until today. Medicaid said they would pay me for his care up to 30 hours per week and his doctors said they would qualify him for 50 but it would mean they could put a lien on our ancestral home so I said NO THANK YOU-we are doing just fine. I've already been approved to be his care taker after taking a course and passed the test months ago. I've decided that when Meno passes I will volunteer at my church that knows families who need relief like golfbhard. Hon-you do need a break. Professional caregivers I think you are all terrific and you non profesionals who threw in the towel I think you did as much as you could and your circumstances were different than mine. I only witnessed short bursts of being called names early on and if he didn't stop I seriously was going to call it quits but thank The Lord I got through to him and he knew I meant business somewhere in that maze of a mind he listened. I was told today Meno is slipping away I guess thats why I wrote so much here tonight. I knew something was wrong because he has been pretty quiet the past couple of days and was having a hard time focusing
this afternoon. Most of the posts have been inspirational and revealing. The public has no idea. I just don't know what has happened in our country that is making our elderly and not so elderly have all these mental problems. Probably in our food and water-air-It is getting to be like an epidemic. Take care and God Bless.-menos daughter Ruth
My mother has a mental disorder. I love her and she loves me, as much as she is able. It would be next to suicide for me to live under the same roof as her, and take care of her, She is well looked after in her ALF, I visit periodically, and am recovering the health I lost a couple of years ago doing more for her than was good for me.
I am sure you will need more than a month to get better. A month will likely see some improvement, but will not be long enough for you to get to where you can be, It has taken more than a month for you to get to where you are now. If you take respite for a month and don't get better - what then? If you take respite and do get better, are you going to go back to the same situation, and get dragged down again?
I have/have had CFS/FM - brain fog, aches etc. Since I have been looking after myself, getting the rest I need, gentle exercise, and eating carefully, it is much improved and I seldom have pain now. I don't think you can do that while looking after your mum. Surely she does not want you to sacrifice your health for her. I do think you can come out of it, but that it will take more than a month - probably some months, if not longer. I think you are playing with fire with regard to your health, and strongly urge you to do what you need to to look after yourself. Hope I am not sounding very hard nosed about this, but I really am concerned for you. Now, as well as caring for your mum, you have a major loss to deal with. That in itself is stressful and will take energy. Grief is quite physical in many ways, and can also cause aches, fog, fatigue etc. I am so sorry about the death of your friend. Please give yourself the space to do the grieving you need to do, and also recover from the years of caregiving, so you and your husband can enjoy your life together. ((((((((((((((((((((((((((hugs)))))))))))))))))))) Joan
It will devastate her to go to NH. But I may have to start with respite first. If the guilt will let me.
It will devastate her to go to NH. But I may have to start with respite first. If the guilt will let me.
My mom said she wish it were her instead of him.
I had caregivers in for 3 days. Our mutual friend flew in from Florida and stayed with us.
I think the reason she put the poop in the pillow case is she was in back pain or in her sleep (that is what she said) her and her brother both walked in their sleep a lot as kids. ????? She wasn't being spiteful. She knows what she is putting me through. Just the other night she was going on how she wished she could die because she was such a burden to us. I convinced her she wasn't (lying through my teeth) then she said "well, ok, that makes me feel better.
Then this morning I went into her room and the smell about knocked me over. She had diarrhea and it was everywhere. I was getting ready to take friend to airport 60 miles away and hD to stop clean up the mess give her a bath , change bed clothing and clothes only for me to help her in new depends and it just started running out of her like a hose on low. I almost cried. Had to cleanherup jump in shower and cleaning lady cancelled on me, take my friend to airport. Ca who weigh aching legs,back ,neck. Exhausted I fell asleep.
I am thinking about taking the respite advice. And see if I get any better (1 month). She has nursing home insurance but not 100%. Maybe turn into long term?
Caregiver that came said sounds like I might have fibromyalgia. Symptoms seem same but like RA too. I especially can't think straight or remember very well. Very foggy
If I do place her do you think I can come out of this or am I already permanently stuck with the pains, deep muscle pain, depression, and fog head.
To all of you out there in the same shoes, I thank you again for your comments and concerns. My heart goes out to you too
ALSO that diahrreah had the worst smell I have ever smelt and my sinuses are blocked Sheis usually constipated. Did not eat anything out of ordinary and no abdominal pain.