Me again – still hopeless

Hi Zinnia,

Please do not give up hope. You see there are so many more cases that you don’t know about, they are some of our senior members who have been exactly where your mother is right now and have gotten better. Some of these people were on vents for 1 year. We also do have some members who are wheelchair bound for the rest of their lives, they just don’t come here as often because they have posted for years and have since moved on with their lives. We also have had members who have passed away, very sad.

We do have people who have gotten better in weeks or months but that is not the norm for GBS. The majority have taken years to get to a certain point in their illness and still have residuals from GBS/CIDP. You can’t count anyone lucky when they suffer in extreme, chronic pain everyday of their lives, suffer in extreme weakness that their legs still give out on them, suffer fatique so bad that they have to be in bed sometimes 12-18 hours a day.Some have to type with pencils in their mouth, but they still come here to help in any way that they can. Some have lost their homes and savings too. Some have lost their spouses because the spouse couldn’t cope with the illness.

Lucky would be that no one would ever have developed GBS/CIDP.

Sorry if it sounds like I’m being mean, but please don’t call it lucky because they might have walked again in a few weeks, they are never the same again.

Take care

Today I didn’t want to write on the forum. Just writing is painful. So I do count my blessings every day, but I am not that lucky.

Zinnia, I am sorry you and your mother are going through such difficult times, but you are not alone. Maybe you haven’t read all of the posts here, but we share our good AND our bad times here. Hang in there.

Thank you Donna for saying it so well.

Hello,
I too want to say don’t give up. Every day your mom is alive, is hope. I was never on a vent or as sick as your mom, but I am one of the senior members and I was severly damaged by CIDP. I have been in a wheelchair since 1999 and though I am now stable with CIDP, I was left with alot of residuals and will probably always be partially dependent on a wheelchair. To top all of this off, I was recently diagnosed with a SECOND chronic syndrome that will progressivly damage the muscles that CIDP does not attack. I have HOPE though, the second syndrome moves very slowly, so my age is in my favor.
You can recover from GBS very very slowly, five to six months feels like a life sentence to you and your mom, give it a year and then look back.

I was just wondering where you are from. I have a friend who is a nurse in a vent clinic and perhaps she cares for GBS patients.

Your mom can get better. Don’t give up. Do whatever you can for her.
My son Nate was in a convalescent hospital 100 miles away from here. He was there 9 1/2 mos, last year.
It took nearly two hrs to get there. A lonnnng drive. I would leave here at 9a.m. when the traffic was done, then stay until 7 p.m. and drive home in the dark.
It made it hard to get there very often unless I stayed at a motel nearby the hospital. I did that a lot at first when he was so deathly ill though. The price of gas didn’t help either.
I did get up there along with his brother and my husband at least once a week after he was recovering. It was hard for him but he knew he was getting good care. We talked on the phone sometimes twice daily. It helped him get through the times when we were not there physically.
Being far away makes it hard but if the hospital is going to be better for your mom, that might make your decision easier.
Even though it was hard and its over now, Nate was given very good care 100 miles away and I’m very glad he was there.
Us caregivers have to do what we can to help our sick loved ones, especially when they cannot even do anything for themselves.
She can get better. Don’t give up. Do what you can for her.
Trudy, Natesmom.
Nate, GBS diagnosed 1-06-06
Discharged 9-30-06

Hi Zinnia, I don’t understand what you mean, lucky or want to see if someone gets as bad as your mom?!!! for one thing how can you say others are not as bad off as your mom?! you don’t know my story, you don’t know how many times i have been paralyzed, you don’t know what my life was like before gbs/cidp! lucky, luck has absolutely nothing to do with gbs/cidp! there is no luck with this stuff! if you really want to help your mom then why don’t you find a dr/hospital that knows what they are doing with gbs/cidp patients! put your energy into helping your mom! i am wasting my energy just sitting here typing this, i can’t put into words what i really want to say-because of residuals with my memory! is that lucky? i don’t see it as lucky at all when i can’t even have a conversation with my husband or kids because i can’t think of the right word i want to say! yes i am lucky because i haven’t been put on the vent YET! i have gbs relapsing/remitting type, i have been paralyzed and in the hospital 5 times since aug 05. i am married and have 2 kids, 13 year old daughter and 8 year old son, and a dog! can you imagine the guilt i feel everytime i have to call the fire department to have life squad take me to the hospital, to leave my kids, my husband, my dog, my other family members, i had a good paying job that i can no longer do, a life i have to limit myself in, etc……. am i as bad off as your mom-probably not because i am me and i don’t compare myself to anyone else. we are all different and have to find out our own limits, recovery times, capabilities, drs, support system, help, care givers etc. we all have our own challenges with this gbs/cidp stuff and its not fair to compare one person to another in anyway! we give each other support, we listen to others fears, faiths and problems, we can’t heal them but we do understand what they are going through-because we are/have gone through it ourselves in one form or another. if we can help find answers for your questions thats great, and helpful for other care givers/family members that read it, but please don’t be condensending to those of us who have our own battles that we have to deal with behind closed doors. just so you know i only touched the surface of my battles here, i would be here for over a year typing if i had the energy to do so to get you up to speed, and that is just my own views. the way i see things, gbs/cidp is not a death sentence unless you don’t have a positive attitude! the more positive you are about dealing head on with this stuff the better life will seem. your mother needs to be put on the top of the list, pedastal, her needs, wants and whims need to be fulfilled. her health care nees to be top notched, by someone who is experienced with gbs/cidp. if it were my mom, i would go with in home care, thats why there are home health nurses, to care for people at home. vents are easy to care for if you want to take the time to get the training. where there is a want there is a way. look into things, keep a positive attitude and your mom will be better in no time. antidepressants and pain meds are a must also. i don’t understand the need to sew her eyes shut, that is going tooo far, use eye ointment and tape if necessary, but sewing the lids together isn’t the answer. when my lids wouldn’t open, i had my mom use a warm paper towel and her moving the lid continously for a couple of days while she visited, worked the muscles enough to the point where i finally got the nerves and muscles working together. please take care of your mom and yourself. feel free to ask any questions you might have, we can try to help get you answers, or just vent when you need to, and remember to be patient. GBS stands for getting better slowly.

i dont think zinnia meant to belittle anyone elses experiences – just that some of us have enjoyed quicker or more extensive recoveries. I am one of them, and i cant think of any other way to describe it than i am one of the lucky ones. I am certainly no more deserving of having a good recovery than anyone else who is unfortunate enough to get GBS in the first place. I am neither old nor young, not particularly religious so what can i put my recovery down to other than luck? I can certainly understand why someone in the depths of their frustration would ask why they or why their loved one couldnt be one of the ones to recover quickly/better. It doesnt mean they would wish their experience on anyone else. I think Zinnia just meant it would help her to communicate with someone else in a similar situation … not that she would wish that situation on another.

Zinnia – you said they were having trouble weaning her off the vent, that she was breathing on her own for a couple of hours but then developing difficulties. How are they weaning her off? I know i started with just small periods of time off the vent that were gradually increased. While i was off the vent i was having humidified oxygen which made it a lot easier to breathe too.

I am also wondering about sewing her eyes shut .. that sounds terrible, I couldnt open my eyes for a while and when i could they couldnt shut properly. I had eye drops every few hours and that kept them lubricated.

I couldnt imagine having to look after someone who is paralysed and on a vent … i know you do what you have to do when it is someone you love but i remember how much help i needed and i was off the vent and able to do some things for myself like brush my teeth, feed myself before they would even let me out of ICU and onto the ward. I know it is hard to be far away from family (i was away from my kids for 5 weeks and that was long enough) but i think quality of care is first and foremost. I wish you luck in making your decision and send you and your family my best wishes.

Zinnia I can hear the frustration. I understand it and I have seen it in my caregivers. You need to be an Advocate for your Mother but you also need to take care of yourself. All the information here has been so good and you have to remember the most important. Everyone is different in the amount of damage their body has received and GBS does start for a quick reminder that it means [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly! Put yourself in your Mother’s position. She is going thru alot right now. Each day is different to some degree. The fatigue, depression, loneliness and think of the frustration she is going thru on an hourly basis. Help her keep a possitive attitude….that does not mean in any way you are accepting this current condition it just helps lift her spirit each day knowing she is not bringing you and your family down and being a burden. Ask her if music would help. In some cases sounds is an over stimuli and causes pain. Tell her about what happened in her favorite program on TV….be her eyes for her. Tell her about the weather and ask if she would enjoy you reading a book or poems or the newspaper. Have her friends and family write letters and you can read her mail to her. Ask her if she needs her hair cut or if she would enjoy having moisturizers massaged into her hands or feet or maybe a back or arm massage. Maybe just a hug! I think you need one too and also a big pat on the back to come and be an Advocate for your Mother. Keep up the great work and take care of yourself. Don’t get discouraged with one post and the slow responses you might get over a Holiday or weekend. Some of us might not feel well enough to post every day or have someone else typing for us on this forum. Tell your Mom we are all saying a prayer for her and hoping you might be able to take some of the posts back to her and read them or get some of her questions and post them here. Let her know that she is not alone. We all have caregivers that we see daily wearing down and getting fragile. Make sure you get help too! Welcome to our family that is always growing. Too bad we can not hear the warmth in your voice or the calm in your stories. Too bad we can not see whether there is a smile on your face or a frown. If I was there and I seen a frown I would give you a poke in your side to turn that frown upsidedown! 😉 We are lucky you have joined the forum! HUGS during the coming months!

Zinnia,

Unfortunately Iwas completely paralyzed and on a vent/trach for six weeks. Like your mom, my eyes couldnt close so they would put drops in them during the day and tape them closed at night. However to be fair, my eyelids were’nt paralysed for the full 6 weeks, so towards the end they didnt have to tape them anymore.

There is a forum member called Frank who was on a vent for almost 6 months I believe. Most of that time he was fully paralyzed and it took a VERY long time to wean him off the vent. He kept having setbacks like infections etc. His recovery has been very very slow, specially in the beginning. I would call his hospital room and speak to his family and friends, and later on him, and he would get so despondent because it would take maybe two weeks to see the smallest improvement – that was after his months and months of being paralyzed.

There was also Billy, who has unfortunately passed away from cancer. He was on a vent and paralyzed for a few months (sorry I cant quite remember). His was an uphill battle for a long long time, but unfortunately he was diagnosed with cancer during his recovery and recently passed away.

I feel I really need to tell you about Eva, one of the ladies who answered your post. …. Eva has lived with the residuals of GBS for about 20 years, it has made her life extremely difficult. Over the last five years, she has had to give up her studies, her chosen career and the travel it encompassed – it was her dream! She has accepted that she cannot work again, or follow those dreams she had for herself, yet she is not bitter or angry. She is [B]highly intelligent[/B] and gifted and would dearly love to work and travel. She lives is Holland, English is obviously not her first language, but she speaks and writes it beautifully – If only I could be as eloquent when speaking and writing. Unfortunately she is at the mercy of the damage the GBS has done to her. She cannot lift her arm because of fatigue, pain and weakness. She is in a wheelchair most of the time (or at least a lot of the time). Eva is almost constantly in pain and obviously feels helpless because nothing seems to help lessen that. She lives on her own, thankfully not far from her parents. Everyday is a struggle for her, but somehow she DOES IT, I dont know how because I would have given up in self pity by now. I dont think I can actually express here what Eva lives with, and here I know I am speaking not only of Eva, but some others on the forum. I feel I have not done justice in trying to describe her disability and what a truly amazing person she is. However Zinnia, this is not the ‘norm’ for GBS, I just wanted you to know how some live everyday.

Your mom nees a lot of time for recovery, however all the other infections etc she is getting is impeding her recovery process. I’m sure you do speak to her about the forum, maybe tell her we are thinking of her and would like to hear from her once she is on the road to recovery. I remember my mom used to go on and on about who called and asked after me, who sent their love, who she bumped into at the store blah blah blah, also what was going on in the news (good news). It really helped me. Are they doing any PT on her Zinnia?

Hi Zinnia,

Please read the post from

“Hi Everyone from Auckland, New Zealand” by davnik. Niki was in ICU totally paralyzed for 2 1/2 months and on a vent.Also new member Stu, totally paralyzed and on a vent, back to work now.

Like I said, I didn’t mean to sound mean but had to let you know that there are others worse or exactly the same as your Mom. You will just have to search all of the threads and that means going to the GBS one, the CIDP one,
etc. You will find stories. Our web site was hacked last year and we lost valuable info from thousands of our members who were as bad or worse then Mom, so please try and go through as many posts as you can.

Wishing your Mom the best.

My eyes were open all the time and I had to ask for drops after about 3 weeks in the ICU. Guess they were busy tending to other things and I got a nurse that had finally thought about that part. It helped during the day and I got them amost everyhour as needed and I NEEDED THEM! I was completely paralized. I then was moved to another unit where they dealt with patients with traches and strokes. There the one nurse was thoughtful enough to mention to the Doctor that I needed a sauve for my eyes at night since I was not receiving the drops during that time. That really helped but clouded my vision, so I had them put it in right before midnight. It is good to have ideas to bounce off other caregivers to help the current patients. Just a shame that nothing is automatic because each one is different. Hang in there you are doing a great job!

Zinnia You also have to be patient. Sounds like she is getting the care she needs and they are trying to work with her and test her daily ability. Depending on the amount of nerve damage the healing process will take years to heal. The nerve has to regenerate also. The sheath of the nerve or the mylin has to also repair and for now the energy is leaking into her body and the nerves are not getting the directions from the brain. The fact that their is even some movement and she is trying is a big plus. As far as reading to her if only for a few minutes each visit it gives her something to think about…..it also gives her hope if you see any signes that are possitive. Sounds like there may be a need for someone to come in and talk to you and your family on how to take care of yourselves mentally to help you cope with what is going on in this slow process. Maybe there is a Liason in your area that can come in and talk to her and read to her. There are travel books that are very discriptive and paint a picture of the area and give you history of what to expect there. Since she is not able to see that might help her visually imagine what that area is like. Funny stories can be printed out from the internet. Poems or humorous stories also can make a day go faster. Or a silly joke of the day! Keep it possitive! Get yourself some help to deal with the past and keep yourself healthy!

Dear Zinnia – First, welcome to this forum. As you can see, people are more than happy to share their experiences. I was a caregiver to my mother for 3 years before her death and know how frustrating and scary that can be. The roles are reversed – and let’s face it, Mom has always been larger than life to us – so it is hard to become HER mother. Trust your instincts and please come to this site if you have any questions. There is another thread called “Things I Wish They Knew” which might help you understand some of the do’s and don’ts when it comes to your Mom. I have been fortunate (yes, I count myself lucky) that my symptoms have been milder than some of the folks here – but they are pretty bad to me when they occur. Each person IS different – we may have the same symptoms with different intensity and many of us have been battling this for years (I’m relatively new, CIDP dx 10/06) and since I found this site, I am not so scared when I start symptoms. I know my new family is praying for me and are there if I need them. Welcome to your new family!

Dear Zinnia

I think you are in a very hard place.

It has been suggested in the past that it’s good to have some fortunate ones here to give balance and hope. Yet your post hit a cord with me because I am very fortunate and have wondered at times how others felt when they read my postings.

I have read of GBS cases as rough as your Mother’s. I know of one young man who was in ICU for a year and walked from the hospital. I only know because my cousin nursed him.

Your Mum is having a hard go with GBS, you and she are not close and she has few friends around. I reckon that puts you in a tough situation with love, guilt, worry, anger, frustration all in one.

The chances are that your Mum’s mind is clear and she does comprehend whaqt you are saying, it is her body that isn’t working.

If you don’t know what to talk about, why not read the newspaper to her, or stories from a magazine? Talk to her perhaps about other GBS’ers on this Forum. About how other infections often happen with GBS, about how GBS means Getting Better Slowly. Personally, I would emphasise the Getting Better bit without suggesting that she will be alright in a week or two.

My guess is that she is scared and lonely. Tell her how you are doing and what is going in in your life. What about leaving some tapes that could be played (although a nurse would need to get it going)? What about telling her that she had it tough as a single Mum and she is strong and you love her? Tell her what you have learned about GBS. Not only will she learn about GBS but she will discover that you went and found out about it – and that’s love.

Personally, I would get a bit tough with the nurses as regards the TV. It’s there for your Mother, not them.

And, you need to look after yourself. She’s your Mum and, as her daughter, you may be carrying a lot of feelings that do nothing to help you, let alone help you to help her. Take some time for yourself.

I realise that none of what I have written may ‘hit the spot’ because I am not you, I am not in your position and I can only say that I feel for you and for her.

God bless

My husband, age 60, came down with severe GB on June 4, 2006. He is still paralyzed except for some head and shoulder movement, and still on the vent and unable to swallow. He was just moved two weeks ago to a nursing home vent unit. He couldn’t shut his eyes for over six months and they never sewed his eyes shut. They just kept putting in drops. He communicated for nine months by either rolling his eyeballs or blinking his eyes and a month ago, they tried a speaking valve and he was able to talk – even though it was very distorted. I think there is still some hope, but would sure like to hear more from people who were long term on a vent and paralyzed. John was healthy and strong, a working farmer, when this happened. He has remained more courageous and cheerful than I have through this. He says he prays a lot. He has had a great deal of support from friends. He is an hour away from home.

Zinnia,

Teresa Anne and others suggested things to do to help keep your mother’s mind active and give her something to pass the time. I’d like to add more suggestions.

If you have a portable radio, you might plug in a single earbud and put it in your mother’s ear (double ear phones might make it hard for her to hear questions from nurses etc.), and tune in to a radio station that has a “talk show” type format. This will help her keep up to date on what is happening in the world too, so she doesn’t feel so out of touch.

You might also get a small cd player and some books and music on cds. This can also be used with earbud.

I suggest using earbuds in case there are others in the ICU nearby who might be disturbed by playing the radio or cd player on speakers. If she’s in a room alone, small portable speakers would be even better.

If you know what kind of things your mother likes to read, you could even read to her. Books or magazine articles would be interesting.

Bring the GBS literature or print out articles or interesting posts from the GBS forums and read them to your mother. She probably has lots of questions about GBS now. The information on the forums has helped me so much to understand what happened to me, what symptoms I have that might be related to my illness, and what to expect in the future. It will help her to be able to look forward to when she can get out of the ICU and get on with her life.

God bless you for being a good and caring daughter. I’m sure you are treating your mother as you would want to be treated if you were in her place. Sometimes illness can help bring family members together.

Please give your mother my best wishes, and tell her she’s in my thoughts and prayers, as are you and your husband.

Suzanne

Hi Zinnia

I know it’s a mixed bag of emotions for you, it’s a million times worse for your mother (and that doesn’t even do it justice). You have alot of genuine issues that need to be sorted. Do you/have you had meetings with the Doctors, Social Workers/Psychologist, PT, OT etc to address the concerns you have for your mother?

I too am concerned about the eyes being sewn shut, I was paralysed from head to toe, in ICU, on a vent and could not blink so the nurses put eyedrops in every two hours 24/7 and at night I had eye pads rather than have them taped shut (I had no eye infections) so maybe that’s an option you could discuss with the Doctors.

As far as stimulation goes for your mother, that is REALLY REALLY important at the moment because as you can appreciate she can’t do anything for herself YET but she’s not a vegetable either. Some suggestions for you that I did for communicating is my Mum brought in my daughters A-Z whiteboard and they would point to the letters and I would give a very slight nod if it was right and that made up the words/sentences. It took a while but was the only way I could talk to people. As more movement came back in my head, I would use different eye/head movements which became the sign for example, don’t do this/do that, too hot/too cold etc etc. So if your mum is struggling to communicate, keep it short and simple. I had nurses read a book to me, friends read the newspapers and gossip mags, an uncle read poetry. I had a T.V for movies, an Ipod with all my fave music and the nurses would set it up for me and a talking book (cd book). Mum and my friends would always pamper me when they came, massage my legs and arms, brush my hair, manicures, pedicures etc, even the nurses started doing it if they had time. Maybe you could arrange for somebody from the GBS society to visit your mum (that’s what they did for me as well) for extra support. Just suggestions for you to mull over.

You mention the weaning difficulties, whatever they’ve tried so far isn’t working and I think that needs to be addressed. I know when I started to wean off the vent, they consultated with me and talked me through the process and they did it very very slowly each day and sometimes I had good days and other times I didn’t achieve much at all but we always kept moving forward (as long as there were no infections or other problems that halted it which did happen as well). At first they altered my ventilator only and then I progressed to CPAP and then BPAP. It took approx 5-6 weeks to wean me, very frustrating time indeed but I got there in the end.

You also mention mums got some movement, that’s awesome news because it’s one step better than none at all. That’s how my movement started back, the PT’s could feel slight muscle movement and eventually I would start getting a twitch here and then more movement and so on and this willtake time, how long, is what nobody can answer.

All I can offer is the above (as shortened version as I could) and just be as positive and encouraging as you can. Patience and perserverance is what you and your mum need to focus on at the moment because she is still at the very early stages of recovery so the road is going to be rocky for a while but it will smooth out as the journey goes on. Hope this helps in some way and take care of yourself because it’s hard on the caregivers too and your mum needs you 🙂

Dear Zinnia.
I am one of the blessed ones. My GBS was caught in the early stages, I am walking in 3 months, I have read all the replys and nothing was (luck) it is a blessing. Yes I am blessed but one thing is I pray for all of us every day and will stay here always just to help someone.
The people here are wonderful and they give support and love. I turned myself over to God and it was beautiful the calminess and strength I have. I told my Neuroligist to use me with anyone that is down. It is hard to stay strong but we have too. Your mom may know and feel more than you realize.and when healing starts you will rejoice. I look for changes in myself every day. This has made me a very humble man and I will never forget this. also I pray for you and your mom. As has been said she will get better. look for changes when you see her. above all take care of yourself. and please keep coming here and venting anger and pain and hurt because you have a family here that cares. May Gods blessings be with you and your mom.
Steve

Zinnia
I also want to say how sorry I am about your mother. It is hard not to get upset a lot. I had GBS/MF 20 years ago and have a lot of residuals left, fatigue, weakness all over the body and even at this point it is hard to get my eyes to close completely. My husband does all of my housework & cooks and you don’t kow how bad that makes me feel since he works a full time job.I do know how you feel, my father was killed in a car accident and one month later my mother was in a car accident. She spent 5 weeks in the hospital and I was by her side the entire time, then for twelve years, my two brother and I would keep her a month at a time. She had to have open heart surgery and really got down where we couldn’t take care of her (home health didn’t work because of us swapping her) and I live two hours from my brothers. Anyway, two months went by and I now have
my mother in law living with us and she has to have someone with her 24 hours a day but unlike my mother she draws $20 to much social security to be able to get medicaid, so we can’t put her in a nursing house. This has been going on for three years. The sad part is I have not seen my mother in six months now. I am unable to drive and with my husband working, and low on funds I can’t go see her very often. I just try to call her on the telephone but it hurts when she says she wish she could see me. I know you really get down and feel like life is not treating you fair. I do trust God, so he has been my strength to keep going and know there is some purpose for all of this.
As everyone said, remember to take care of yourself, because if you don’t nobody else will.