Caregiver For 6 Years

    • Anonymous
      May 20, 2006 at 1:46 pm

      Hi to anyone that might need a caregivers point of view. I was my husband Frank’s primary caregiver for 6 years and he passed away on Christmas Day from an unrelated illness not from GBS/CIDP.

      I have been a member of this Foundation since July 21, 2001.

      If I can help you in any way, I will certainly do my best to help. ๐Ÿ™‚

      So ask away.:)

    • Anonymous
      May 23, 2006 at 7:56 pm

      Good idea, Brandy! I could use some ideas to help my caregiver feel better. I’m 8 months into GBS and not able to stand for long; however, I walk with a walker. Anyway, Ken does all the cooking, the dishes, the cleaning, the washing and helps me with my shower. He gets out to do the shopping, etc., but doesn’t leave me alone too long. He gets many accolades from me, our friends and relatives for being a super husband, but, those must just sound like words to him sometimes. What did your very special guy, Frank, do for you that helped you through the rough times?

    • Anonymous
      May 24, 2006 at 9:50 am

      Hi Barb,

      I just posted here and somehow my whole post disappeared. ๐Ÿ˜ก

      Frank always praised me to family and friends on how I took care of him. I quit my job to be with him 24/7 because that’s what was needed to care for him. He also would send me flowers and buy me things, which I didn’t need, but that was his way of thanking me.

      He also made me go to my Mom in Florida when she was dying and he had just been diagnosed and in the hospital. I was reluctant to go not wanting to leave him, but we have 3 adult sons who were there for him. I’m glad he forced me to go, she passed away in my arms the 2nd day I was there. My sister and I brought her back to New Jersey for burial. Then I started my fulltime job as a caregiver. That was the greatest thing he did for me, I would have regretted all my life not being with her when she passed.
      That was the angel in him.

      Then there were days that he would get like a monster, because he felt so helpless with GBS and his unbearable pain. I ignored it 98% of the time. The other 2% I would yell at him and he would stop and realize that I loved him but I wasn’t going to take any crap from him even though he was so sick.

      Just keep up the praise to your hubby, believe me it feels good. But I feel that it’s your job as a spouse to take care of your ill spouse, the marriage vows we said to each other were, “In Sickness and In Health” I know when I had any surgeries or was sick, Frank took good care of me too.

      He also was a great father and praised his sons for taking care of him through his illness also.

      He would order flowers for me all the time because he knew my love for flowers. He’d send me out shopping because he knew I loved to shop, but I always made sure that I bought something for him too. That made him feel appreciated for taking care of me in his special way. He always wished that he could do more for me, and I told him he did enough for me, that I didn’t need presents to thank me for caring for him.

      Caregivers do need time off from the job, so if he needs a mini vacation day give it to him. Ask a family member to stay with you for a day, so hubby can get out and do something for himself that he likes to do.

      Enough of my babbling.

      Just love and thank him, that is the best thing you can do.:) ๐Ÿ™‚ ๐Ÿ™‚

    • Anonymous
      May 24, 2006 at 7:00 pm


      What a loving wife you were to your Frank. I hope it comforts you to know what good care you took of him when he needed you most, and that he must have known how very much you loved him.

      We value your continued participation in the Forums and your willingness to help others. I wish you happiness now and in the future.

    • Anonymous
      May 30, 2006 at 6:35 am

      My husband Eric has been diag. with GB. Can you give me any information about the disease and what happens?
      Thank you,

    • Anonymous
      May 30, 2006 at 1:27 pm

      Hi Anthey,

      Welcome to the forums.

      The first thing I will ask is, did you ask for the GBS booklet when you signed up here?

      When was Eric diagnosed? Has he had any treatments such as IV Immunoglobulins or Plasmapheresis?

      There is no cure for GBS only the treatments to try and halt the nerve damage that is being done from GBS.

      You can expect a slow recovery from GBS, around here we say GBS means “Get Better SLowly”

      He could have breathing problems,extreme pain, no feelings in his feet, legs,hands ,arms, all the way up to the top of his head.

      I’m just giving some of the things that can happen. In order for us to help you
      we need for you to tell us where Eric is at this point. Is he home or in a hospital? Is he paralyzed and up to what part of his body?

      This illness is not very much heard of and some Drs have never ever seen anyone with GBS.

      Please answer the questions and we’ll try our hardest to help.
      Take care ๐Ÿ™‚ ๐Ÿ™‚ ๐Ÿ™‚ ๐Ÿ™‚

      P.S. I wanted to add feel free to ask your questions in the Adult GBS section here, you will get alot of responses there from the veterans of this illness there.

    • Anonymous
      May 31, 2006 at 11:56 am

      My 78 yr old has had GBS since 2/12/2006. I have been at her side everyday since the beginning. She is in a rehab now and getting movement back alittle everyday. Rehab is so depressing for her because her mind is so with it and the other patients there are old and in bad shape. I visit her everyday and I know she will never be able to live alone again. The plan is for my wonderful husband and I to sell our home and move in her house, my childhood home, to take care of her. I don’t know if she will need 24/7 care but am willing to do that if needed. This has been an awful thing for her. She was sooo independant before the GBS and now she has to rely on everyone else to do for her.
      You are a great example to me and I thank all of you for the information I get from this site. We have an appointment with the Neuro next week for the first time since out of ICU and I am wondering if you could give me any information on what I should ask the Dr. I will add the suggestions to my list.
      Devoted Daughter Donna

    • Anonymous
      June 1, 2006 at 8:21 pm

      Under Main Discussions I posted my dad’s story my mom is talking about under “My Dad My Hero has GBS”, not knowing my mom posted here. I just found by viewing other discussions my mom had posted here. Thank you all for helping us through this.

      Mumbles 143

      P.S. Mumbles 143 is my dad’s nickname because as a child no one understood what he was saying so they called him mumbles.

      My mother took care of my grandmother (her mother) until she passed 3 years ago of congestive heart failure, my grandfather has alzehiemer’s and has been bed ridden (my fathers father) for 3 years right after my grandmother passed he became bed ridden. My mother has been married to my father for 46 years and she is 100% a caregiver. She can nuture anything to grow, prosper, and make stronger. She holds us all together. Stay strong mom…As the site has told us GBS stands for “Getting Better Slowly.” Keep your faith strong and we will make it and our big papa bear will come home.

    • Anonymous
      June 1, 2006 at 10:06 pm

      Hi Donna,

      Ask about Physical and occupational therapies to continue, that is really important. If Mom is in any pain, suggest he give her one of these meds Neurontin,Cymbalta,or Elavil. Ask the Physical therapists and the Dr exactly what you can do to help Mom at home. The therapists usually have some good ideas that might help.

      Ask about shower seats to accomadate her. Also I wanted to add this, you don’t know how far her progress will take her, she might very well be one of those that after awhile will be independent again. I hope that for her with all of my heart.

      Mainly the PT and OT to keep her body moving.

    • Anonymous
      June 2, 2006 at 8:26 am

      [quote=Brandy]Hi to anyone that might need a caregivers point of view. I was my husband Frank’s primary caregiver for 6 years and he passed away on Christmas Day from an unrelated illness not from GBS/CIDP.

      I have been a member of this Foundation since July 21, 2001.

      If I can help you in any way, I will certainly do my best to help. ๐Ÿ™‚

      So ask away.:)[/quote]\

      Dear Donna,

      I think that in many ways you still an active caregiver to all of us on the forum. Your compassion, help, support and adivce is such a blessing to me, and I know to so many others on the forum. Thank you for staying with us, thank you for being there for all of us. ๐Ÿ™‚

    • Anonymous
      June 2, 2006 at 11:10 am

      God bless you Brandy. Your kindness is beautiful. My wife has been through this disease with me for going on ten years. She accompanied me to all the doctors visits, gave me ivig, made sure I was comfortable during the hard times. She cried when I couldnt walk and cried again when I could walk after the chemo. If i had to face this alone, I am certain that I would have given up and in long ago. I did not mean to hijack your thread, just wanted to say THANK YOU and God Bless you. You helping everyone you can after all youve been through. You are one in a million ๐Ÿ™‚


    • Anonymous
      June 2, 2006 at 11:46 am

      Ali and John,

      Thank you so much for those wonderful words you just posted. It means the world to me to have such great friends here or as I usually say my family here.

      I have to give back to this community and will stay here forever because without this family, Frank and I would never had made it through the last 6 years, since no one in our family or so-called circle of friends ever understood what Frank was going through. Only here could I express my frustrations and anger at the world or ask any medical questions that I needed answered, everyone here understood and uplifted me emotionally when I needed it. Now that’s true friendship, that’s true family.

      I have to tell everyone this, when Frank passed away and I was cleaning out some of his paperwork, I found all the birthday wishes from all of you from the years past. He kept them and I never knew that. Frank was the type of person to throw everything thing away after a day or two. But not all of your birthday wishes, that tells me he appreciated all of the things that were done for him through me on these forums. He knew this was a huge family, I would print out alot of the posts for him to read and then I would tell him who everyone was and how they were progressing in GBS/CIDP, so he knew he wasn’t alone with this illness. He appreciated that alot.

      So in return, I give many, many thanks to my family here too, I could not leave any of you, ever.

    • Anonymous
      June 2, 2006 at 11:48 am


      Give that wife of yours a big hug and kiss, she deserves it.:)

    • Anonymous
      June 11, 2006 at 10:18 pm

      Hi everyone! Brandy I believe you had said once that your husband had diabetes, or maybe it was someone else. My husband Keith has CIDP, uncontrolled diabetes, acid reflux, hital hernia, high blood pressure, some is going on with his kidneys but we don’t know what it is right now. But my question is what in the world could possible else he can get. He is 39 yrs old and stays in severe pain. We have 3 children and our 2nd boy has a heart condition which resulted in 3 open heart surgeries. Can any one give me any idea or has anyone went through all this with their CIDP?

    • Anonymous
      June 12, 2006 at 12:20 pm

      Hi Susie,

      Yes, it was me who said that my husband had Diabetes, high blood pressure and heart disease. I posted somewhere here to you last week, that if your husband takes IVIG, he needs to have one that has no sugar base or sucrose base to it. It will shut the kidneys down. Ask the Dr what brand he had and if it was sugar or sucrose based. Make sure he never takes that brand again. When Frank was first diagnosed he suger went out of control, then it took a while he got it under control again. The with every change in medication it went out of control and he never got it to an acceptable level for the Drs. I looked up his meds myself and saw that alot of them caused his suager to get out of control and cause very big weight gains too and I asked the Drs about this and they yes, alot of these meds will do it. So it was a cache 22 for him. Does your hubby take anything for the pain? The meds he can take are Neurontin, Cymbalta, Elavil and there are others that control the nerve pain.

      There are going to be alot of ups and downs that come with this illness, and Frank and I learned to tackle the problems as they arose.

      Baby steps, that is the only way or you will go crazy. If his Neuro doesn’t want to listen to him or take him seriously, time to find a new one.

      Frank happened to be fortunate to have an excellant Neuro.

      Take care Susie and treat yourself kindly as a caregiver should.

    • Anonymous
      June 14, 2006 at 12:08 pm

      Hi, I’m Norb’s wife and caregiver. He has been passing on a lot of wonderful information from this group. Usually, I have little time to get onto the computer but lately the stress has worn me down a bit. That’s probably because I’m also 3/4 nanny, cook, shopper, and housekeeper for my daughter & her husband. We live with them 3-5 days a week. By the time we get back to our house, I don’t feel like doing much but there is a lawn to mow, a garden to weed, cooking, shopping, and our own laundry and cleaning to do.

      I keep taking on jobs that Norb used to do. Last week I tried to change out the air conditioner filter and ended up shutting down the whole thing. It has been really hot here and when I thought it wasn’t going to come back on poor Norb thought I’d gone a little wacko.

      Since, our wonderful new drug plan took effect, Norb’s drug bills have gone through the roof. We are still holding our breath about whether his secondary insurance is going to pick up the rest of his IVIG costs. I keep thinking I really need to go back to work but can’t imagine how. I finally decided to give myself a break and hired a 16 year old neighbor girl to mow the lawn. Last summer, Norb insisted we buy an electric mower – not self-propelled – because he knew he couldn’t start a gas powered one anymore, so I’ve been pushing that thing up and down our hill.

      As difficult as things seem to be some days, it has really helped me a lot that we worked with Burmese refugees for two years. When I start to think I’m suffering, I have to laugh at myself and to recall their wonderful positive attitudes despite experiences of real torture. It’s all about perspective, isn’t .

      My father died of lung (& bone) cancer in 2000. Norb and I moved there to help my mother. At the time, I really didn’t quite get it that she had become so exhausted and overwhelmed. It was so easy for me to “advise” her just to take better care of herself.

      The word for the day is “perspective!”


    • Anonymous
      June 14, 2006 at 12:48 pm

      It’s so nice to meet you Carol. Your hubby sure does know how to have fun when we play games here.

      Just wanted to welcome you with a [B]Big Hello[/B]

    • Anonymous
      June 14, 2006 at 12:52 pm

      Dear Carol,

      Norb often speaks of you in his postings, I am so glad you have posted on the forum and given us all the opportunity to meet you. You have a hard, emotional and often thankless job being a caregiver. I will keep you in my thoughts and prayers.

    • Anonymous
      June 20, 2006 at 9:30 am

      Nice to meet you Carol… One thing I would like to stress to any caregiver is the guilt a patient feels for getting sick in the first place. The first few years I wished I could just diappear off the face of the earth. How totally useless I felt, unable to do anything for myself. How guilty I felt when my husband had to run 4 1/2 hours each way to Mayo every weekend for 3 months. When I finally got home, my 78 year old mother had to move in to take care of me so he could work. What an awful time that was.

      He had to do all of the gorcery shopping, cooking cleaning, running errands, dealing with the medical bills & all of the other bills, etc. But after 26 months I started to come around somehat, & was able to take care of much more again. Last August his back went out & he needed 2 back surgeries. He was out of commission from August 16th until March of this this. I became his primary caregiver. It felt so good to be so needed & to be able to wait on him. Now my mother might need knee replacements & I would be her primary caregiver. So one never knows what life has in store for us.

      If you can afford it, get someone to do the lawn all of the time & get a housekeeper. You might have to tell your daughter that doing all you do for her is too much? Take car of yourself, that is all I can stress…

    • Anonymous
      June 21, 2006 at 2:45 pm

      My wife is the reason I’m alive 2.. God Bless the Caregivers, for Wat they go thru..

    • Anonymous
      July 3, 2006 at 9:18 pm

      [B]I’ll tell you a little about my situation, everything started out in February 2000 for my wife.

      Well, at first she started getting sick at her stomach, accompanined by vomitting. This went on for quite awhile, she went to a hospital in Shelbyville Ky, she was in there a total of 4 times. Every time the Drs came back with a different diagnosis, they went from urinary tract infections to one thing after another. One of the Drs said it was all caused by stress, well they even did an ultra sound. Which I don’t think they knew how to read the results, anyway.

      The sickness only got worse, finally in May my wifes mother had her taken by ambulance to a hospital in Louisville Ky. 45 minutes after she had been there as to which they ran an ultra sound, they came back with a diagnosis of a diseased gall bladder, It was 3 to 4 time larger than it should have been, she had surgery the next day for the removal of the gall bladder.

      I thought that would be the end of her problems, Not quite. She started having trouble with tingling & other things. A neurologist that was in the US from Russia was called in to examine her, she suspected GBS by what my wife was describing to her. They did a lot of tests & they confirmed that the Dr was correct, the next morning her respiratory system was shut down, & she died the Drs someway or another brought her back. She went through plasma pherisis 5 times they also did IVIG. She was completely paralyzed at first, she stayed in the hospital for 3 mnths, & was taken to a nearby rehabilitation center.

      After 1 mnth they got her where she could walk using a walker, she had to learn how to do everything all over again. The GBS hit her extremely hard, she also had a form of CIDP that the Drs claimed was so advanced they couldn’t even classify it. But anyway she has had one hospital stay after another since 2000.

      In 2004 she had to have 2 large stones removed from her bladder, & a mnth later she got a colitis infection that was so bad it destroyed her colin. No meds would stop it, so she had surgery for the removal of her colin. The Dr said it was one of the worst cases he had ever seen he removed 95% her colin. He said at first he didfn’t think she was going to make it to the fact he only gave her a 5% chance of living. But she beat the odds & she fought it & made it, she was in ICU for 3 mnths due to problems. One of them was they couldn’t keep her temp down, so she was placed on a cooling pad with lines that went to a cooling unit. This was the only way they could keep her temp down, but she finally made it back to a normal temp mode.

      She finally got out of the hospital again, I forgot to say she has an illiostomy & has to wear an ostomy pouch on her lower right abdomen, as to which she is unable to change it because she has limited use of her hands still. So I take care of changing the ostomy pouch, she also has a GTube in her stomach as to which this is the way she takes her meds. They are all crushed & dissolved in water & put in through the tube, thats another thing I take care of. She is currently on generic Neurontin 800 mg 3 xday, for nerve pain as well as Hydrocodone 7.5 500 mg for pain.

      Another thing the GBS did was it almost completely destroyed her nervous system, she had constant nightmares & they got to the point I thought she might eventually wind up in an institution. Her psychiatrist put her on Seroquel 300 mg 2 xday, within a mnth the bad dreams went away & she got where she wasn’t afraid to go to sleep. One thing that kept occurring she kept seeing hands trying to grab hold of her & pull her through the bed, but that went away finally. So now we’re just getting on with things she still has the bad nerve pain & the tingling still prevalent but the generic neurontin seems to help keep it under control. I hope what I’ve shared with you gives you a little insight as to why I came here. Just wanted to share this as I have been a careprovider since June 2000.[ /B] ๐Ÿ˜‰

    • Anonymous
      July 4, 2006 at 5:58 am

      God bless all caregivers! The love and total commitment to me, from my hero~husband, saved my life. He never waivered when everyone left us to ourselves. We were married just 2 short months when the GBS hit, 11 1/2 years ago. Two little words ~ thank you ~ are “not big enough” for all the Brandys, Carols, Richards . . . I love you all ๐Ÿ™‚

    • Anonymous
      July 6, 2006 at 3:24 pm

      Thank you Judi,

      We as caregivers do it because we love you all so very much. ๐Ÿ™‚

    • Anonymous
      July 22, 2006 at 3:09 pm

      when your alumb coming out?

    • Anonymous
      July 22, 2006 at 6:33 pm

      You have a new album coming out Donna??? ๐Ÿ˜Ž

    • Anonymous
      July 22, 2006 at 8:40 pm

      Just read your post Dustdemon. What a terrible ordeal for you and for your wife. What a wonderful husband you are to stand by her and help to get her thorough these things. May God bless you both.

    • Anonymous
      July 24, 2006 at 2:53 pm

      [QUOTE=ali]You have a new album coming out Donna??? :cool:[/QUOTE]

      Wish that I did Ali. I ‘d love to make billions for GBS/CIDP Research. Wouldn’t that be great. I can only wish and dream that I could do something like that.

    • Anonymous
      August 15, 2006 at 3:04 pm

      Hi Duchess,

      Away a long time and devasted to hear about Frank, how are you?

    • Anonymous
      August 16, 2006 at 6:36 pm

      [QUOTE=royf]Hi Duchess,

      Away a long time and devasted to hear about Frank, how are you?[/QUOTE]

      Roy My Darling Friend,

      First how is Joanne? I am hoping she is doing better this year. I have missed you so very badly. I kept sending you and Joanne e-mails and posting on the old forums in hope that you would be back one day and here you are.

      Don’t leave here anymore, or I shall have to travel to South Africa and yell at you.

      The last time Frank asked me about you and Joanne was about 3 weeks before he passed away. I told him that I hadn’t heard from you in way to long and was hoping that you and Joanne were OK. He always asked about you two because he knew how much I cared about you and Joanne.

      I am doing so much better emotionally since I moved back to where all of my family lives including my sons. Which by the way the youngest Dan and the oldest Mike are both getting married. They gave me a double whammy. I’m very excited about both marriages. I get along wonderfully with my 2 future Daughters-in-law. They are angels. Now I need to find a bride for my middle son Jeff. LOL

      Is your e-mail still the same as a year ago? If not send me your address in a private message. My e-mail is still the same if you still have it. If you don’t I’ll send it to you.

      God Bless You and Joanne Dearest ๐Ÿ™‚ ๐Ÿ™‚ ๐Ÿ™‚ ๐Ÿ™‚

      Love The Duchess

    • Anonymous
      August 17, 2006 at 1:12 pm

      Well hello Duchess,

      Thank you so much for the welcome and Joanne is sitting beside me on her PC playing cards, she is still doing very well, here she is!
      Hi Brandy, sorry to hear about you husband. I am sooooo much better than the last time we were in touch.
      It is going to be a very expensive time for you but look on the bright side, you will gain two daughters.
      \our youngest son is also planning to get married for the second time. I will be quite happy for this to happen.
      Speak to you again soon.
      Me again, I lost all my information when lightning took out my old PC, right after that my old firm asked me to come back to work so I got totally involved and have only recently bought a new PC and am back on the www. Not sure if I am allowed to post it here but here goes anyway, new addy has one more digit [email][/email] mail me, need to catch up with you.

      Love Roy

    • Anonymous
      August 17, 2006 at 2:53 pm

      Hi Roy and Joanne,

      I just sent you an e-mail with the new address, hope it comes through. If you don’t get it let me know and I’ll re-send.

      Joanne, ๐Ÿ™‚
      It is so good to know that you have improved and are feeling better. I have missed talking to you and Roy. It’s been far to long my dear friend.
      Thank you for your condolences on Frank’s passing. I am hoping that you both stay with us this time around.
      Congratulations on your son’s new marriage. I can’t wait for these 2 weddings, it’s going to be fun. Actually, I have to tell you about my son Dan’s wedding. He’s getting married here in New Jersey-USA, this October 20th 2006 a small party that day,then next June 2007 we are all flying down to South America to Ecuador, so they can get married in her church and a big reception. Then in September 2007 they will get married in my church here in New Jersey and a big reception to follow. Can you imagine getting married 3 times? He’s such a romantic, he used the firetruck to climb up to her window to propose to her. At the 2007 wedding here in our home town, we will have all the firetrucks at the church, after the ceremony, they will blast their sirens and drive the bride and groom away to the party.


      Are you still working? Don’t work to hard if you are.
      Please don’t stray to far from the forums, I have missed you two so much.
      Take care of your beautiful bride.

      My Love Always To The Both of You,