I have hung tough for almost 4 years with my husband, he tries in his disabled state, but to me not enough. He could reach out to others but his pride keeps him from it and leaves it all on me and I am hurting so much, but yet tomorrow at 3 am I will have to be up to take him to dialysis, I am tougher than this but sometimes want to quit and just wonder where the friends and family have gone, but they are gone. Wish they knew what it was like to lift the wheelchair, lift him... I have to get off this pity party I hate it, I am stronger, I know that, but somedays the hurt overwhlems my brain, I try so hard everyday, I want it they way it was when my big guy took care of me too, it all changed too much, too fast. Well guess in my best interest take more Gabapentin and go curl up in bed with the fur kids, so thankful for them, but not quite the same as curling up with your spouse. Thanks for listening...
Oh Betsy. My heart goes out to you. Thanks so much for posting. If we can help just a little bit by listening it make my pain just a little less. My husband is very supportive all in all and it scares me to see us getting older especially with TN under the surface, ready to rage. How to find meaning in my life is a question that I find myself asking. Since I don't have any children and my husband is 12 years older than I, during the day the thought hits me... how can I make this life worthwhile? Today the pain is very subdued, but I fear... what if I end up in constant pain? Is there something worthwile? I am in a harder position the some because I am not religious in the sense that I believe that God is looking after me. I am spiritual but in a larger sense of the goodness of the world and all its wonders. I sort of envy people who are religious and can just know that in the end they will rest in the arms of God. Maybe that is a way to give purpose to suffering. It sounds like for you... you need a break. I have read how caregiving 24/7 is so difficult. Is there anyway to get away for 8 hours a week? To join a caregiving support group? I am in love with going to Water Aerobics several times a week. Really it sounds like you just need a break and your wonderful strong spirit will bounce back. Keep posting Betsy! Sending you love and caring. Tina
Oh Betsy, you are a very strong woman, BUT we can’t always be strong…you’ve every right to vent and allow yourself to feel vulnerable…it’s so important to our emotional health…
I’m glad you posted, I don’t know what resources are available to you, but when my dad was living and on dialysis, he had a specialized bus that took him in his wheelchair to his dialysis appointments, is there anything like this you can look into?
This would give you a bit of a break ( while he’s at dialysis) and relieve you of the physical stuff that must be so hard…
We’re only human, I’ve had to swallow my “independent pride” many a time the past few years, having to ask for help, not easy for me to do…
By the way, you’re not having a pity party, you’re just being honest about how hard it is to do what you do, and have TN, it doesn’t undermine your strength of spirit to admit you long for days gone by.
You need to be taken care of too, and although it can’t be the way it was, I’m sure your husband might just need a reminder or a nudge…tell him what he “can” do despite his disabilities to make you feel cared for too.
Take care of you, sending you gentle (( hugs )) and positive thoughts,
Mimi xx
I am so very sorry Betsy, but you are absolutely amazing to be doing all that you are!
As KC said, look into transport for your husband’s appointments; it is usually covered by insurance. Also, please check into in-home caregiver services. There are many different services that can range from someone to do grocery shopping, to help cooking, to caring for your husband while you go out by yourself for a bit.
Adding fulltime caregiving to a “normal” life is extremely hard, but for us it is right next to impossible at times. There are support groups for caregiving and many free programs for caregivers, usually through the Area Agency on Aging in your city/county, plus most counties also offer some services (you & he do not have to be older for a good many of these).
Please, please do check on these and use them if at all possible. Caregiving is a HUGE task and every caregiver needs support.
Please let me know if I can help you. I know quite a bit about this field and would be happy to help you find agency that can make your life easier.
Thank you everyone, as always you lifted my spirits! I don't stay down long but when I go down, I go down!!! Pain a tad better today, thankful for that! We don't have human kids either, always chose to have our dear Saint Bernards and cats. And yes, I too sometimes wonder is this really my life now! I think part of the problem is that we were apart so long while he was in the hospital (2 1/2 years) and I had to adjust to living that and I did, but now that he has been home a year we are still adusting to being together so much and him losing a leg, being in wheelchair, losing career, dialysis, etc. And from what we all know with insurance and sometimes help, oh my the system! We make too much with disability and SSDI to qualify for a lot, lol, they don't take into account losing 60% of income didn't change bills we owe! We have a home health care nurse come for wound care 3 times a week and a helper to bathe two times a week, but thats it, what we qualify for under Medicare. I have looked into caregiver support groups, none near by, we are north of Houston and the problem is leaving him for too long. Just last week had to call 911 cuz he fell out of wheelchair and his 250lbs versus my 100lbs didn't work in getting him up and ya know what, didn't even get handsome paramedics, darn, grin, see I am back today! I know this would be tough anyways and I know the TN is what makes it so much worse because I have to keep on for him and I get resentful, even tho I must say he is understanding about it. I have begged his family to just give me a day or two off, but to no avail. Soon dog shows will start up again and that will be good, TN or not that is something that is my escape and my joy and oh how the dogs love it! They are big hams! We all know the feeling of asking why, why me with TN, but is what it is and even after all the years with it, still learning to balance the fear of having a bad day with enjoying the good ones! Perhaps soon I can start my dog training again, I have learned most clients are understanding about TN if I am upfront from the start about it and since I go to their houses usually not put out if I need to change a session. Thanks so much for listening, my neighbor told me yesterday the problem with most is that we are always seeking happiness, to the point we don't realize when we have it....given that a lot of thought, know there will be tough days always, life, how I handle it and y'all sure make it easier to handle the TN, just knowing I am not alone, especially in my thoughts. Well I have rattled on enough, back to taking Christmas down, really I put this much stuff up :)
Betsy I admire your courage and brave spirit! To live with the exhausting pain from this condition AND to still have the love for your husband to be his strength, his constant companion - what an amazing lady you must be! I take heart from all the stories I read on this site. Your situation cannot be easy, and you have so much love and pride for your animals too! My 2 dogs are a such good friends to me, they love you no matter what and I never have to explain to them why I don't feel good.
Thank you for posting with such honesty. The pain from TN has changed all our lives, and for me personally it has been such a humbling experience in so many ways.
Betsy, I was a caregiver for my grandmother (also in a wheelchair) and I didn’t have TN then. I understand how difficult it can be to care for another. You said family and friends are no longer around…have you thought about reaching out and asking for help?
I am in shock when I read so many of your stories, and know, even with TN you still have so many responsibilities. My husband often asks, as I report situations from this blog, "do people actually work with this pain?" He has had TN type 2 for over 18 years, has not been able to take medication, no surgeries have helped. He can hardly get off the chair most days, so I have no idea how you do it When the pain builds toward the end of the day, he uses alcohol to just "get away" from it. He was so young when this took over our lives. Our child is now grown, and it is just he and I and our English Bulldog. I can't image him trying to care for anyone other than himself, any stress sets him thru the roof, I just try to be here, keep the bills at bay, the stress situations minimal, and try to have a life. He gave up a long time ago!!
I do not have the slightest clue how you could possibly do all that with TN.I go from the recliner to the bedroom and that's it when mine flairs up.TN is torture enough for anyone.You are an amazing woman.Try to hang in there and find all the help you possibly can.
Betsy, you are a trooper. It takes a special person to hang in and caregive for a loved one let alone have to deal with health issues themselves at the same time. I'm glad that you have fur kids ... I had to give some of mine away due to the TN and cleaning up after them but I did get a dog not too long after diagnosis knowing I was probably in for the long haul with TN and I think they do make a difference, nothing like pet therapy ... they don't care if you're not able to do things and they just love you for being you :) I hope that at least the TN improves for you.
I'm so sorry, I can't imagine having that sort of responsibility towards my spouse while at the same time being disabled by our own type of pain. Sometimes I also want to quit and I also wonder what's the point of life if I am to live with this type of pain the rest of my life.. but then I remember that when I think about quitting what I am really looking for is a type of relief and quitting won't relieve anything at all. How can you feel relief if you're not alive to experience it? I think the worst part is when you try and discuss this with others, it's difficult. No one understands what kind of pain you're in and it's easy to be dismissed. But feel assured that you're not alone. I found that having social support helped me tremendously. Sometimes I forget I'm even hurting if I'm having fun with my friends. It's those moments which make it worth it! I hope you can find some social support to help you through this time, if not you have everyone on this forum
Jeez, I empathize with your husband. I'm only 22 and I have TN type 2 as well but I'm still thinking something will help me. I can imagine his frusteration. I'm a full time student and a full time worker as well, and any type of stress triggers pain so bad that I can hardly talk to people. I hope eventually we both find some sort of relief!
grv said:
Betsy,
I am in shock when I read so many of your stories, and know, even with TN you still have so many responsibilities. My husband often asks, as I report situations from this blog, "do people actually work with this pain?" He has had TN type 2 for over 18 years, has not been able to take medication, no surgeries have helped. He can hardly get off the chair most days, so I have no idea how you do it When the pain builds toward the end of the day, he uses alcohol to just "get away" from it. He was so young when this took over our lives. Our child is now grown, and it is just he and I and our English Bulldog. I can't image him trying to care for anyone other than himself, any stress sets him thru the roof, I just try to be here, keep the bills at bay, the stress situations minimal, and try to have a life. He gave up a long time ago!!
Yes you are very strong, but caregivers burn out. I just bought a book on this subject. It comes on e-book version (read on computer) or paperback. It's called "Coaching for Caregivers, how to reach out before you burn out."
http://amzn.to/MLzc4F Since it's you bearing all the weight, it must be you that gets a bit more firm with your husband, telling him you are not a machine, and that if something happens to your health, then where would he be? The family and friends really don't understand your burden, and may also have been chased away by your husband saying you don't want/need any help. He's not thinking of your needs as much as you are thinking of his. Are you on Facebook? I just joined a wonderful caregivers group called "Caregiving Hurts", they all have great ideas of how to make the job easier, how to communicate with your loved one about your needs, and a place to just vent and laugh and cry and learn. Best wishes.
Shelia, thank you so very much, I can't wait to get reading, the book sounds like just what I need! I used to be on Facebook, but stopped because I never had time, lol, perhaps I should make the time, the group sounds good too! Again, so appreciate this :)
You are an Amazingly Strong woman with your plate very full. You can't possibly do it all, and continue to do it all, all of the time, without having break-down moments or days. I struggle with that concept myself, feeling guilty that I should be doing more or "doing it all". We are all entitled to have those moments or days.
I wish I lived next door, I would come over and relieve you so that you could have some time for whatever you may want it for. For all that you do and having TN too, you are inspiring to me - thank you for sharing your story. I will keep you in my prayers!!
Thank you, Jodi! Nice to know I can be an inspiration :) I think we all struggle with I should do more, but we all do so much just living with tn, right! Thanks for your kind words, they inspire me!