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Info & Suggestions For Our Caretakers! :)

BunnysnaxBBunnysnax Posts: 36
edited 06/11/2012 - 7:55 AM in Matters of the Heart
Hello all! :H

I thought it might be a good idea to begin a thread topic just for our Caretakers -
(kinda like the sticky ones we have about what we - as patients - might expect from surgery, prepping for the day, being home, recovery, etc.)

I'd like to get one going that would have helpful info that our caretakers might need to know. Many of us have families and such that often don't seem to understand how long these recoveries can be and it adds to the stress, frustration, and depression that many spiney patients have to deal with.

After these spinal surgeries, the patient's life is literally put on hold for a while - often for months at a time - and family, spouses, etc. can put unintentional pressure on the patient, often making them feel like they have to do more than they should, just to try to maintain the status quo for our families.

I haven't had my surgery yet (probably in December if I can wait that long) - but I'm a bit worried about the recovery part and my hubby as caretaker. He's a super loving, thoughtful guy and will totally spoil me, but he is also the really "go-getting," work-a-holic type - whereas I'm more laid back and mellow. After reading a lot of other stories here, I fear that my family group might - not purposely - make me feel pressured to rush the recovery.

So, I suppose I'm asking everyone to maybe share their ideas and thoughts to help make a list of things that our caretakers need to know, and maybe make suggestions on how they can be of the most help to during our recovery period. Maybe even ask your own spouses/caretakers what they experienced. Stuff like what the caretakers can really expect, what things we'll likely be forbidden to do, what they can do to help alleviate some of the pressures of running the household, etc.

I'd love to hear your thoughts and how you handled family, responsibilities, social obligations, etc...It would be great to have a list that could maybe even be printed out to give to our spouses, family, friends, and caretakers. O:)
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Comments

  • I think this is a great idea! I can understand your post surgical worries. Maybe if your husband can come to a pre-op appointment with the Doctor , it might help him to understand what to expect with your recovery.

    On another note, does this brace help you? That is one thing I have not tried! Keep us updated on how your surgery goes!
  • Thanks! I think so, too! I just hope that others agree and can help put these things together!

    The brace actually helps quite a bit. It was custom-made by an orthotic and prosthetic manufacturer. My doc said that not only can it help alleviate some pain, it is also a diagnostic tool, in that it "mimics" the fusion surgery. So, they reason that if the brace helps me feel a bit better, then it's another sign I'm a candidate for the surgery.

    It's a monster of a brace...the front is like canvas with velcro strips and the back is like a row of 4 steel, vertical bars encased in leather. It pretty much goes from under my boobs to right at my pelvis - totally immobilizes the lumbar.

    Are you planning to get your spondy fused?
  • I had my cervical spine done first. My Doc said I had to due to chance of paralisis. I was back at work 6 weeks later. I am trying to hold off on lumbar surg as long as I can. I get steroid injections that hold me over for a month or so, but then its back to horrible pain. i work as a nurse and have to be on my feet all the time, and it hurts so bad when I walk.

    Your brace sounds like the real deal. Is it hidden under your clothes? I am looking forward to seeing how your surgery goes. I am sure your family will wait on you hand it foot.
  • Oh wow - yeah, you're low back sounds a lot like mine! It sux, huh? And oh yes...standing is a bee-otch for sure. Walking isn't much better.

    Well, I'm hoping that the surgery will help. I mean, I know they say not to get surgery (not necessarily) for pain relief, but because of nerve damage (yep) and/or if there is spinal instability (yep).

    As for the brace, I suppose it could be worn under clothes, but I feel that would make me look heavy! LOL! :))) Plus, you want to wear a cami or tank under it so it's not on your skin, so it's actually easier to wear it over clothes. My biggest complaint was that it is white! LOL! Makes it stand out a lot more. I wish it was black. But the guy who made it said it's "virgin white" because a lot of folks have allergies to certain dyes.

    The front of it is like 8-10" wide with 4 velcro closures. The sides are like a corset (with grommets and long laces) and the back is white leather covered metal bars. To wash the front (the canvas part) I have to untie both sides from the back (frame part) and when dry, lace it back up.

    LOL! My hubby says the front looks like one of those 1940's pin-up corsets! HAHA! Until I turn around, and see the bars, of course!

    Did your surgeon suggest that it's safe for you to wait to get your lumbar fixed? Sounds like you may not be able to put it off too much longer =((

    I will certainly be around more as the date draws closer. I've been dodging the "surgery bullet" for a long time, but it's reached the point where I can't run anymore. So I'm scared shiteless as I'm sure everyone is before spine surgery.

    Be sure to keep us posted on how you're makin' out too, kay?
  • I guess I am fortunate in that my lovely bride has been a fantastic caregiver with having to deal with 3 surgeries in the last 4 years with more to come. Not to mention having to deal with my pain induced crankiness.

    When it comes to caregivers, for me the worst part is for them to be overly protective. Yes I know I have limitations; and yes I know there are things I can no longer do. But I still need to move around and learn any new limitations and how to function within them. If I want to hobble over to get a coffee refill, let me hobble dammit :)

    I believe the biggest thing caregivers need to have / learn is patience and understanding.

    Hope you have a pain free day

    Curt
    View my history for all the gory details.
  • dilaurodilauro ConnecticutPosts: 10,045
    The actual surgery and hospital stay is the easiest of all phases for spinal patients.

    The recovery phase(s) are long, tiring, frustrating, and can and will place physical and emotional stress on the entire family.

    Spouses for the most part will be the caretaker. But do they fully understand the situation and what the following months will bring?

    Reading through this forums, you will find countless number of posts from members who said that:

    - Had no support at home
    - Spouse resenting and being angry
    - No understanding of the situation
    - Jealousy

    You will soon find out how many people will post to this thread with their own experiences.

    I am moving this thread over to Matters of the Heart category. This topic and follow on posts are really best suited in the Matters area.
    - And much much more
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I have a wonderful boyfriend that takes GREAT care of me, even before all of this. He brings me coffee in bed every morning.

    I am worried that he will expect me to be "better" sooner than I actually will be. We had a friend with a quadruple by-pass that was up and driveing the DAY he got OUT of the hospital! Also, the only surgery my boyfriend has had was for a hernia many years ago.

    I don't want to feel "pressured" into doing things to fast. He wouldn't do it on purpose but I still worry.
    I am glad you are all here! You have all helped me so much!
    Celia,
    ALIF L3-5 Aug '11, butress plates added pos. Feb '12, 2013 revision decompresive laminectomy L3-SI, removal of hardware, exploration, allograft, instrumentation and possible bone morphogenic protein (BMP) 3rd times the charm!
  • First of all, I am new to this forum so please be patient with me as I may do some
    things incorrectly :( The extent of my abilities so far has been texting and emailing...no Facebook, etc....I'm just too intimidated. I'm still learning the correct way to maneuver around this forum and post on the correct places.
    Anyway, your husband sounds much like mine. He is fabulous, always wanting to do things for me. There is a fine line between accepting help and asking your loved one to allow you to be independent. I just don't want him to end up feeling resentful.
    I am having surgery in four days after putting it off for years....ACDF c5-6 and C6-7. I work in the healthcare business and actually am an employee at the hospital where I am having surgery. I am so nervous.
    My husband will be home with me for two weeks...much longer than I think he needs to be, but he is very protective, as he knows all too well that I am not comfortable with asking others for help. I will be posting tips on how we can help our caregivers as well as looking for tips myself. Thank you for starting this thread!
  • I wish you the best on your surgery. My boyfriend was right in what he has been telling me so far. I just don't listen untill it comes from the PT guy or the home nurse!

    They all told me to slow down and be more careful with my movements. Sheesh! Mom was right about sittin up straight!

    So far my boyfriend is far from resentful but I cringe when I get on my pitty pot. It's not often but I just hate the pain! (and the fact that I am grounded till after my followup on the 24th.

    9 days post op and still need a lot of help around the house. Thank goodness Tweek is the caring type. I make sure he doesn't stay home from functions or being with his friends. Then he might become resentful!

    Celia
    Celia,
    ALIF L3-5 Aug '11, butress plates added pos. Feb '12, 2013 revision decompresive laminectomy L3-SI, removal of hardware, exploration, allograft, instrumentation and possible bone morphogenic protein (BMP) 3rd times the charm!
  • When I had my accident, my partner wasn't understanding at all, he also told people that I faked pain sometimes as when people came to visit me I was more cheerful and didn't complain about the pain so much. He never understood that some days I was able to do lots of things and when my pain is under control I can clean the house, mow the lawn, do my hair and loads of things I normally can't do. After doing all these things I go back down as I know I shouldn't do them... in the end he found help and support in his young nurse (he was a dentist). She (his nurse) was so unconsiderate, telling everyone how sad she was about my condition and everytime i was in hospital texting him all the time and sending him messages on msn because she missed him sooo much. In the end, I asked my ex after 17 years together (all our life, my only sweetheart, I thought twin souls) who did he love and he just said that I wasn't the same, I was dependant and needed help when before I used to solve all the household issues, plus work and any paperwork that had to be done. So I told him I was leaving, his answer was: you can't leave you are sick and you need help! I replied (excuse capitals, I am not shouting) I CAN DO, WHATEVER I WANT TO DO, WHENEVER I WANT TO DO IT and just smiled. Took my car and two suitcases and told him to keep everything. He hasn't seen or heard from me since, I moved country and started a new life without him.
    I had two very good years healthwise and the stress of being his burden disappeared and that made me feel very relieved, whenever I could pay a helper I did, if I couldn't I had my friends. Now, phantoms from the past haunt me as I have a new parter for the last two and a half years and he saw the good side, now I have been over two months in agony not being able to do most things and I see in his eyes he is tired of being at home and seeing me drugged up sleeping most of the time... he comes back from work and when he sees me laying on the sofa he doesn't look happy at all and waiting to see the neurosurgeon to see what's wrong this time, the pain managment have given me new meds and the physiotherapist won't touch me until they know what is wrong... I feel it is difficult to have a relationship with someone in our condition with chronic pain and certain handicaps, I wish it would be different. I cannot make others understand why some days I can sit up and be sociable and others I just can't move. I hope the cymbalta they've given me starts kicking in as I am very anxious and scared.
    Thanks for reading and sorry it is not a nice story
    Maria
  • I feel for you. I had a boyfriend once that was sort of like that. He "didn't like Dr.s and Hospitals.." and was absolutley no help to me.

    My current boyfriend is wonderfull and very compassionate. I still have fears of him getting fed up and leaving or being angry at me because of my pain.

    Whe I get to feeling that was or "see something in his eyes or attitude" I ask him abloout it. He knows the door is open if it ever becomes too much for him. What I see in his eyes is actually sadness for ME not for his part in this. I am learning to trust him more and more.

    It's hard not to bring attitudes and fears from a previous relationship into a new one. I just tell him why I feel worried or scared and we talk about it.

    I hope all works out for you and that you are mistaken on what you think he feels.

    Celia
    Celia,
    ALIF L3-5 Aug '11, butress plates added pos. Feb '12, 2013 revision decompresive laminectomy L3-SI, removal of hardware, exploration, allograft, instrumentation and possible bone morphogenic protein (BMP) 3rd times the charm!
  • MetalneckMetalneck The Island of Misfit toysPosts: 1,599
    consideration ...

    After my two level ACDF failed .... and continuing to work full time in agony while I looked for doctors that would pony up and help my physically and mentally detoriating situation ... My wife and I of then 17 years grew further apart. I believe that once she realized that I wasn't going to be the money machine I had been for the past many years,
    and was facing the potential of chronic pain and disability her mind, heart, and vows began to wander.

    3 weeks after being in the hospital for an 8 day anterior - posterior - cage - rods - 12 screws revision - she announced that she was divorcing me.

    For those of you that are so blessed to have a partner that continues to love, support, and stand by you in what is the most challenging times (thus far) in our lives - please cherish them and remind them each day how special they are.

    It takes an angel to stand by us, as we deal with this devilish disease.

    d
    Spine-Health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!  (Click on Welcome to Spine-Health)
    My Story  - Click below
    http://www.spine-health.com/forum/discussion/44804/pain/neck-pain-cervical/long-and-winding-road
    I am not a doctor nor have I ever played one on TV.  Therefore any comments made are based on my experience.
  • Thanks for your words, I'm sure we would have done anything for them if they were in our shoes... With my new partner he only saw mild "crisis" and this one is lasting almost 3 months I've been in and out of hospital 6 times and now waiting to see the neurosurgeon again to see if anything can be done. They say I have to have the wing cage fusion and the prodisC out and stabilize the cervical column with a plate as it is very unstable. This is too much for him, he can't take it. Today he took me to physiotheraphy and after to a bar and couldn't understand why I couldn't just sit there... I explained that after physio I need to lay down for half an hour or more to relax and then we can go out. The weather is so good and everyone sitting out on nice terraces having drinks and here I am laying on the sofa with the laptop. Of course, I'll have to go and pick him up after...
    He was very considerate at the beginning, this time he is just fed up and that is what I see in his eyes and his behaviour. We could lay in the garden! tomorrow we have to get up at half six and I have to struggle to get him to work so I can go to the hospital appointment and then pick him up again at one... he just doesn't know what an effort it is for me right now! I am very upset.
    Good luck on the 8th and keep us updated
    Soft hugs
    Maria
  • Thanks for sharing your story. I am so sorry this happened to you it is difficult after 17 years (same as me) I never expected him to change so much, maybe I never knew him...
    And I agree that those who have partners who stand by them, love and support them are sooooo lucky and they are very special.
    Just lets imagine we get well with time and we can do all those things we want/would like to do and one day we feel happy again. That is one thing, we are content/happy with every little thing we achieve that other people take for granted! It may sound silly but when I can do my hair and clean the whole house, I feel like the the queen of the castle, satisfied and proud of myself :-)
    Those days will come, they have to
    Hugs and take care,
    Maria
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