IF YOU ARE NOT UP TO READING A LONG STORY, COMPLETE WITH WHINING AND COMPLAINING, PLEASE MOVE ON. I GET SOME STRENGTH FROM READING OTHER PEOPLE'S POSTS, AND HAD A LITTLE BIT OF TIME TO TELL MY STORY. LOVE YA'LL!!!
All my life, I've been logical and was always able to figure out what to do in difficult situations. I have finally met my match. I am not a religious person, so I don't pray for devine intervention. I have adequate support from my family, BUT I am the primary caregiver for my son, and any mothers out there will understand why I am in this situation. I've had back problems and fibromyalgia for over 20 years. They started after major back surgery. I've gone to a pain specialist every month for18 years...mostly because I take prescription opiods. 12 years ago, my then 40 year old son had a maor neurological occurrence that left him 90% quadreplegic. My husband and I moved into a larger house where we could have my son and grandson live with us. I became my son's primary caregiver (the only one for about 3 years), until I hired aides to help a few hours per week. The constant physical exertion of being a caregiver to a person who can hardly move causes damage that sneaks up on you. It's been 12 years, and Im now dealing with Spondylolistheses ...where my original disc removal was, is now 25% protruding over the disc below it....causing widespread pain because of nerve compression and pinching. My neurosurgeon explained that I needed to have surgery to re-align my spine and fuse it together where the problem exists. They would need to get to my spine through my back and abdomen. The recovery period is 8+ months. In the meantime, I've had hip problems (severe degeneration in joints), neck problems...arthritis and disc problems, knee pan (previous surgery needs re-do or knee replacement), severe carpal tunnel syndrome in both hands, tendonitis in shouoders and arms.....and all the psycological issues that anyone with severe chronic pain can relate to. AND, on top of it all, our dearly beloved fibromyalgia, that threatens to kill me on some days. Actually, all the pain overlaps, and I'm not always sure what is making me hurt. Sometimes chronic pain totally rules our existance!!
What would other mothers do????? How can I abandon my son, who cannot move, and move him into a group home (or whatever), while I am stll alive? It has become totally cost prohibitive for us to hire more help. We all try to scrape together $3,000 a month just for the 20 hours of help we are receiving. My son is not entitled to any state or government aid, because he is just over the financial limit to be qualified. My husband and I are retired. My husband is 73 and I am 74. One of the questions asked before each of my monthly visits to my pain specialist is "have you felt hopeless enough to think about suicide or to contemplate it?" My answer is always "NO", but only because of the affect it would have on my son's well-being.
To anyone who has actually read this...thank you so much. I havent posted here in a long while, although I log on frequently to read what everyone else is going through. I usually helps me to get through my own things. I hope all of you are doing the very best you are capable of.
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Geriinaz
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I have read your post, Geriinaz. It is obvious to me that you have done your absolute best for your son for donkeys years but it is absolutely taking its toll on you severely now. Whether all you have is a result of caring for your son & all the heavy lifting that results in, or separate conditions, it is clear to me that you absolutely can’t carry on like this, as much as you feel you must. It’s time you started to put yourself first even for a little while or you will clllapse & the situation will be taken out of your hands. As much as he needs you, your son must see the heavy toll this is taking in you. Sit down & have a honest chat with him, and also with your GP & ask what can be done to help you and your son before you get very seriously I’ll, just because you have been trying to cope all these years.
I send very much love, & hugs. What a wonderful Mum! .. but you must speak to someone about this, and also to your son..
And moan? I was expecting far more than you did, and it would be more than justified. You vent whenever you need. We all need that!
Lots of love
Rose.
Please regular post. I’d like to see how you are getting in.. or DM me. I’d be very happy to hear from you!
Thanks for your reply. Sometimes a little bit of sympathy, empathy, compasion, etc., is what the doctor ordered. And...."donkey's ears"...I had never heard that one! Google explained it to me. I just love Brits!!! Your advice is logical, and this is the first time (on a large scale) that I have used emotions over logic in dealing with my situation. My GP and my pain doc are aware of my situation, and their suggestions are similar to yours, my husband's, and friends. I would, no doubt, give the same suggestions to someone else in my position. Knowing my son's needs, when I visualize him living somewhere with strangers trying to tend to all of those needs, my heart physically hurts and I become incapable. My procrastination is causing me more physical harm, but I just can't push past my emotions.
I love that I can vent here, and not be judged. As a "sufferer" you know how important empathy is. All of the comments to my rant were so kind. It took me about 10 minutes to stop crying. Thank you, Rose, for your kind/caring words.
Thanks, Gabby! Yes, I have my hands full, but I agree with you that "there are people out there in a much tougher place than I am"!!! Thanks for your kindness.
Hi please done feel bad about needing to offload - you have so much going on and dealing with your sons needs, not only your own
As a mum, I totally appreciate you wanting to care for your son at home - however, it does sound that realistically it is approaching a point where you and your husband can no longer cope due to age /health and may need to consider alternatives.
Thanks for caring! My husband and I discuss "the future" often. I just need to stop thinking with my heart. This has been my biggest challenge as a "Mum".
I completely understand. my youngest brother has autism and learning disabilities, and my mum had to make the decision to allow him to go into supported accommodation a couple of years ago. It's taken a few years for him to settle into having his own wee flat, but he does well now. Xxx
It sounds like a good decision was made.! thanks for your input. I don't know why HealthUnlocked was not high on my list of priorities for a long time. I now realize that the support and understanding is invaluable, and I will be a steady visitor. Thanks
Oh dear! I thought I was having a tougher time than usual right now. 76, age still creeping on and too much to do. - My son lives with us. He too is in his forties but has good days and bad days due to migraines but nothing as serious as your son is going through. Mine still manages a life for himself on and off and helps me and his dad too, chauffeuring me to appointments with acupuncturist and chiropractor etc. He was invaluable driving my husband to hospital to have three stents put in his heart recently. Health problems pile up and I think fibromyalgia takes a lot of the energy most normal people would not even think about as they get on with problem solving. You certainly have a lot of those to solve. - OK! Many would think me a complete nutter but I talk to what I might call Light Energies that manifested when I learnt how to do Reiki years back and so also does my son - but not my hubs - 'Angels' is the most common term. The theory is that if you don't ask 'They' can't help you. - Since both our request for help with a very antisocial/fire-risk of a neighbour this last year 'stuff' just happened to stop the highly negative behaviour patterns of his and he is now living with more safety in another place. - Our place in this was to help out with the odd problem, but basically better qualified people to help became involved and the immediate stress of living next door to a very insanitary place full of old cars and junk has passed. It's all gone. So what I'm saying is that change can happen - Perhaps there are people near you who like to volunteer their time and energy to people who are overburdened. They would of course have to be part of some organisation that oversees these things safely. - My youngest son was once invited to take part in helping with a group holiday for disabled and he said it taught him a great deal. (He now helps his partner with her disabled brother.) Perhaps your son would really welcome a change of scene for a week or two with different carers so you would get some respite. I will add that the wife of a good friend of ours asked for contributions to help her have a week's break from caring for her husband and we and other friends were so happy to give. People don't always know if, or how, they can be of help but if they are asked they feel good about it. The love is out there and I'm pretty sure you need and deserve some input of that right now, so please do ask both the human and the 'Other'. It will in any case free your mind up a little for solutions you might not have thought about. - It's good that you came on to this site to tell your story. It gives other people (like me) more motivation to do that. (I reply to things sometimes but I don't think I've discovered how to actually 'Post' things yet!) Fibro is a very odd reality to be in! Best of wishes Geriinaz. x
Thank you so much KimiJay. I consider every option when I am given advice. Other people's experiences are the best teachers. I have a hard time with asking for help. Unfortunately, I have "trained" my family that mom does it best. Now, that is kicking me in the Butt! I get alot of support from my family, but we are a small pod. Fibro IS a very odd reality to be in! It's not just the physical pain. I am in a fog most of the time. As you know from being a similar age, there are things that naturally happen to our brain and thought process. Add that to the fibro fog, and it often feels like we are living in a different universe. Thans for you arvice and for being kind. Be well!!!
Thanks Geri. Everything you have said resonates with me. The ageing brain and the fog ... oh yes! - Well, today (after a good chiropractic session yesterday) I really am having a me day in which I finally put some order into my study and set myself up to be more productive in our local writing class where I can share what I like doing with lovely supportive people. It's been a long time coming! I suppose 'one day at a time' is good advice to us but planning for continuing minor crises and struggling to do anything sort of gets in the way of that. Good luck with your day and I hope some gentle, helpful changes start happening for you and your family. They sound just great. xx Jo
Sorry KimiJay, I just wrote a long post to you but I have had a stressful time after work when I got home as I couldn’t open my front door so 5 hours later after my flu jab and work, arriving home I have just replied to you and it didn’t forward to you😢 I’m down £900 for an emergency locksmith and my poor mum has paid for the bill as I don’t have the money in my account,‘I don’t get paid until Monday and Im a carer and it would take my whole months wages 😢what a sad world it is today.!if it wasn’t for my 94’year old mum who believe me is by no means wealthy I don’t know what I would have done 😢I am exhausted and in pain and sooo tired that I shall say good night
Oh my goodness! No one needs that kind of problem. That was a huge amount to pay. I feel for you especially under the present ridiculous financial mess the country is in. - What a fantastic mum you must have though. That's love! - I would like to think that there is some way you could at least get some help with paying for that from somewhere. Seems rather exorbitant to be charged that. It was a really wet day too. You were truly stuffed with that happening and the jab. - I hope you are feeling ok today but expect you probably are not. - Don't worry about replying unless you want to offload some more. Happy to listen. xx Jo
Sorry for your problems. Dont know whether I will be much help but for what its worth........! I think I would opt for the operation. You say your son is over the limit for financial help but surely if he paid for his care for a limited time, he would eventually reach that limit, and then he would qualiiy for help. I know its not what you or your son want want but I'm sure your son would understand if he knew he would be coming home eventually. What input does your husband have. Perhaps if he could visit him frequently it would help. You say you bought a larger house to accommodate your son. Could you not get equity release to help you out financially. I know none of this is ideal but it might give you some other options to consider.
Thanks for your thoughtful suggestions. My son's monthly income is what puts him over the maximum allowable for additional government assistance. Paying for his own care would not affect what he receives monthly. My biggest issue, however, is the emotional distress this has been having on my son, and how impossible it is becoming to me to consider him being moved into a carehome to have strangers care for his each and every need. In addition to his quadreplegia, he also has dysarthria, which is the paralysis of the muscles used to speak. I can barely understand his words, so I can imagine how difficult it will be for him to communicate his needs to stranger. The logical person in me could probably figure this out, but the loving Mom cannot. I know that might sound crazy or obstinate to some people, but, Unfortunately, I am emotionally driven. I don't think I can change at 74 years old. Thanks for caring.
Your words are supportive and understanding. Saying "I don't know what I would do in your situation", tells me that you are an ever-giving mother, who knows how hard it would be to stop caring for her son. This will probably sound like I am a martyr, but I would rather live with my physical pain than the emotional distress I would cause myself if I had to move my son into a care home. Unfortunately, I know the decision will probably be out of my hands if my body continues to break down.
I do love this forum, and I am making the effort to spend more time here. Other people's experience is sometimes the best teacher, and people here are the BEST listeners. Thanks again....and I hope YOU are doing well.
hi, I once was a manager of residential home for adults with learning and physical disabilities, the care and attention they received was fantastic, im also a mother with a daughter who has cystic fibrosis, and I left it a wee bit late for myself to get the help when I needed it and it was taken away for me for a while , I was unable to give her daily physio, I had to speak to my daughter, and we where honest with each other, she has had a few weeks respite and she really enjoyed the company of other people, so what I’m trying to saying, have you asked you son what he would want to happen, as you say you can’t continue with the situation you are in, you would be able to visit him every day for as long as you wish, and take him out and maybe once you have had your surgery and are back on your feet, you could have him home for a few days at a time, but what I found out is my daughter really looks forward to her wee respite away from me and be with other people, she enjoys the days out with her friends and enjoys the things a lot of her friends have in common. At first I would be at home crying most days as I felt I was letting my daughter down, as it should have been my duty to care for her, but I started to learn to control my guilt, I used worry what other people would say, but my daughter is so much happier, with her break away from me, as she was feeling guilty, knowing how much pain I was in caring for her, then one day I had to let go due to having breast cancer, I’m still recovering, but its been a long road, and maybe soon if you don’t see to yourself and take the help that’s needed you might not be fit to care for your son, as you have been doing, you have to be more kind to yourself and try and talk to your son honestly, because I’m sure he will feel guilty, that is mother is in so much pain and needs help herself. So please I hope I have made some sense in writing this without upsetting you, but you never know your son might enjoy the wee break and I’m sure the nursing staff with be able to understand and help with all your sons needs. What is going to happen if you leave your surgery until it’s to late to be done. Then it will be taken out of your hands where as just now you have the choice to talk to your son and explain how you need help also. Please forgive me if I have spoken out of term, but I’m a wee bit younger than yourself, and I was struggling. So maybe a wee bit of you time and your surgery and hopefully it might help with your situation, take care you have been a wonderful mother and now you need help xx
OMG...your post made me cry...but in a good way. Hearing your story resonated with the part of my brain that is logical. It sounds like you are the type of mother I am. Let's face it, being overly protective and dedicated can have its price. My son it terrified to be in a care home. Almost every one of his needs has to be taken care of by someone else, and his paralysis extends to his speech, so it is pretty difficult for him to communicate effectively. That is one of his biggest concerns. We have discussed the "eventuality" of making a major change in living situation, but talk about it like it is inthe future. I know I am in denial.
Right now, I have been getting MRI's x-rays, etc., of my back and hips. when all are complete (especially the spine photos), I will see my neurosurgeon. I am hoping we can discuss options, but I am no fool. I've heard it before, and he will say it again...I need to be fixed. My pain specialist has talked about oprions to control the pain (spinal stimulators, etc.) but that would be a bandaid, and would not fix my problem. In a month or so, I will know what my next step "should" be. That might take the decision away from me. Sad that it should reach that point, But I guess I have been conditioned by 1 years of taking care of my son.
Please know that you have NOT spoken out of turn, and what you suggest does make sense. I am very thankful that strangers can be so caring. How are you doing with your breast cancer??? Have you had surgery? Treatments? I have three very close friends who have had it, and just recently, my niece who is 40 had a double mastectomy. I am very happy to tell you that my friends are cancer-free and are just fine now and that my niece is going through the paces, but it all seems to be going successfully. I will be thinking about you and sending very strong vibes to give you strength.
thank you so much for reading my post to yourself and understanding how things catch up with you in life, thankfully my cancer has all be removed and had treatment, which was the hardest part, I’m so tired all the time and even more so with a flare of the monster fibro, I also have cervical stenosis and lower lumbar stenosis, and was offered surgery 9 years ago, where they go into the front of the neck and help to relieve the pressure, but as my daughter at the time was only 8, I asked if i had time to wait a few years so that my daughter was a bit older and would be able to manage a bit more for herself, but as things have turned out, I’m to late now to have surgery as it is to far gone, at present I manage with a stick and crutches, but my hands now are not working the same, it is only myself and daughter, my ex husband walked away, when I was diagnosed with the cancer, ( that’s another long story, so glad he’s gone) he has no contact with us. So what I was trying to say really is if you leave things until it’s to late, you won’t have that choice to make for your son, reaching out for help opened up a new social life for my daughter and has taught her to be a wee bit more independent, I have seen such a change in her, she had a one to one carer when I was not able and now my daughter has someone she trusts so much, and if things get really bad for me, I know I have done the right thing for my daughter, and in the future she will always have support, there would be no harm in trying baby steps at a time and you might find your son will find that special person to help him, and someone your son can trust, I know how you feel, thinking that you are going to be redundant, but trust me you will always be his wonderful caring mother, and you will always be there for him, maybe not as much in the role of all his needs or the heavy work load, but he knows you will be there for him emotionally, always. Before you decide on your surgery, a weekend at a time or even one night a week until he has his own routine, it is amazing to watch the change in people and how much they manage to cope with things, as I said I was in the nursing profession, and that is what we are trained to do, is care and nurse, and understand everyone needs, families included, it was heartbreaking watching parents walk away and leave there children in my care, but we might be the carer but you will always be his number one, and that can never be taken away from you, but as your health is deteriorating and needing help yourself, I would seriously consider some respite to start with. It is so amazing to watch how all my residents became one big family and was there for each other also. So please think before it is to late and leave it until your surgery can’t be done, just like mine, which I now regret every day, I know my daughter is happy and content, and it has reassured me she will be fine. I’m 54 years old and I’m hoping I might be able to have a few years left yet, but I just wish maybe I done it differently. You take care of yourself and have a little me time. I hope everything works out for you in the way you wish send you all my love and best wishes x
hI there I've read your post, I don't know what to say except you are one strong lady 🙏🏻 keep posting and updating everyone 💖 I don't post very often either...I do hope you search every avenue for some help for yourself aswell as you're son....sending lots of hugs to you from the UK Geriinaz take care
Thank you so much for your caring words. I do appreciate that I can vent all I want and that there are people who seem to really care. I have to face this head-on, and hope that I do the right things for my son (and me😊). Thanks again.
What an amazing person you are, what u have been doing for your son is amazing. I have become a carer for my mum who has mixed dementia but not just for my mum but to help support my 74yr old dad so we can have her living at home with him. I have watched him struggle and struggle along with myself as my mum has gotten worse. My dad has health problems of his own but nothing like ur describing for urself. He will not put mum in restbite to get a break due to guilt, it took me a while just to encourage him to allow my mum to attend a daycare centre so he could get some much needed rest, as he was spiralling into depression. I have spoken to a local carers charity and all they keep saying is how can my dad care for my mum if he won't care for himself, it is the most important advice that I keep hearing. I have struggled myself where I am burnt out and useless to everyone, going into my own depression, feeling like I can't continue and the guilt of if I don't help my dad in anyway possible then mum will end up in a care home. Anyway what I'm trying to say is if you don't take care of your own health then what situation will you be in in a years time or two years time with what your already suffering from, it may get so bad that you are unable to be a caregiver. And then maybe u won't have many choices regarding your sons needs and care yet if you look after you first, then even if your son lives with you or not, you can still be there to give him lots and lots of care and love and support. I am 39 and suffer with widespread pain on a daily basis and tremors in both legs and hands. To think you are 76 and doing what you do out of love and kindness, I am in awe of your strength. Please look after yourself and your own needs and than you can continue to be the amazing person you are. Xxx ♥️
Thanks for your supportive words. Anyone providing care to a family member can relate to what we are going through on some level. Even though we all deal with various levels of physical pain and burnout, the universal thing we all go through is guilt, and most of the time the guilt overrides our sensibilities. Thanks again for your kindness. Somehow, I will figure this out.
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Fibro Flare, Never ending Migraine & Money Stopped.
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