Need encouraging stories
AnonymousJuly 19, 2007 at 3:01 am
I wrote back in May about my sister in law, she is still on respirator, and has slight movement of her feet and neck. I know GBS is for get better slowly but we are all discouraged. They are now talking about putting her in long term care with the respirator on. She is only 49. We don’t know what to expect, is she going to be confined to a wheelchair the rest of her life or bed ridden?? There is also the financial worry as 100 days does not seem so long when she is so slowly recovering. Help! Any stories or advice will help. Thanks.:)
AnonymousJuly 19, 2007 at 10:04 am
Good morning Shelly.
I was very frustrated in the hospital. I was stressed.depressed, scared, One morning after they had finished my IVIG I started falling back to sleep. I felt a touch on my arm. thinking it was my nurse I open my eyes. There was a figure in white standing beside my bed. I asked who are you. The reply was I was sent look at your wall. I did and saw a white circle with a soft glow. The person said we can go through that light now. I hesitated then asked do I have too. He said no. I said I want to stay here for awhile. He smiled touched me and as I watched he slowlet entered the light and over 5 mins it slowley went out. I told my Neurolighist this and she had tears in her eyes. She said I have heard this from a few of my pts. The thing is from that moment I have accepted my GBS been calm and in less than 4 months I was walking.My GBS was mild. One thing I did every morning was to look at myself and find something that had improved. and I did find something and still do.
My Dr asked me to visit a young lady with GBS. the feeling of love and giveing her encourgment was over powering and humble.
Your sister inlaw is healing. she will get better. BUT she has to be encouraged for every little improvement she gets. Treat her as normal when you are with her. do not patronize her. When she has visitors tell them to never show sorrow or pity. encourage her. My beliefs are spirtual and I trust in my God. I give myself to him every day to do as he wishes with me. Remember Shelly she is IMPROVEING. The caregiver is a great part of out healing but listen to us. If we say we can or will do something let us. remember we are in the shoes of GBS. We are fighting to get well and to walk again (which we do) and with some it takes longer but we do get there. Be joyous when you are with a GBS pt. do not come in with your face down and act like you want to leave as soon as you can. I didn’t want anyone to be with me because I retired from a hospital and saw this look of doom from visitors. Be happy and remember walk ONE DAY AT A TIME. each day is a stept forward for us.
Think postive smile be happy and above all turn it over to the God of your choice and let go and let him. You will see changes in yourself and your sister.and above all YOU rest also. share with others do not hold it in. you and your sister are a team both walking to the small white light that every day will slowley get bigger. Remember we have the right to tell a doctor where the door is. Only about 60% of doctors even know what GBS is. and some are just stupid in their statements. do not accept what the dr has said find another if you have too. Find one that is careing. You both are in my prayers every day (Steve)
AnonymousJuly 19, 2007 at 1:52 pm
That certainly was inspirational. I remember praying that if I wasn’t going to get better, then take me now. But I did not have anyone staying with me. One of the friends who eventually deserted me would have to leave after an hour or two (and he was only there one or two days a week),because his cat needed to go out and get some sunshine. He didn’t want to disappoint her! I am crawling on the floor and he is worried about his cat’s feelings!
Shelly, I think many of the posts will give some comfort to your sister-in-law. I read The Law of Attraction by Esther and Jerry Hicks. It talks about attracting good things into your life…..it comforted me. I felt like I had more control of my life. I never thought I would be able to stand up after crawling for four months on the floor. My counselor would tell me to visualize that I was walking. I couldn’t. I would watch tv and wonder how legs held people up. I was not able to crawl over the side of the bathtub to get in for four months. I would have to back up and boost myself up to get onto the toilet. All of this alone. I feared a fire or if the furnace would fail…what would I do? So your sister-in-law is ahead of the game because she has friends and relatives. What is the phrase that makes you happy when you are sad, and sad when you are happy – THIS TOO SHALL PASS……the mind is powerful and can help her heal faster.
AnonymousJuly 19, 2007 at 9:09 pm
Where it says Private Message, it says there are Zero that are Unread. So I haven’t checked it. If my mailbox is full, how do I erase the ones that are there? I just found two messages from the end of May. Thanks for telling me that. Now I need to empty my mailbox…..and how do I do that….?
AnonymousJuly 20, 2007 at 3:17 am
this may not be overly encouraging, but can be useful. when she leaves the hosp the care will not be as good. in particular watch for pneumonia. the below info may be valuable. take care. be well.
gene gbs 8-99
in numbers there is strength
My dad is the administrator of a nursing home. Anytime a complaint is made, the state comes out to do an inspection. I would write a formal complaint to the state & let them know what is going on.
Someone should be with him every single day to make sure that the staff is keeping up with his care. I would type up a list of everything that should be done daily, every other day, once a week, etc & make copies for the family. When someone checks on him they should find the supervisor & ask what is done then check it off the list. If the place knows that your family is on top of things then they will work harder to make sure that his care is better.
Incidentally, my grandmother was in rehab center for 4 days last year around Thanksgiving. She was in a room with a woman who would defecate on herself & then spread it all over the place and no one would come for HOURS to clean her up. My Grandma was there for physical therapy and did not have it at ALL while she was there. On her 4th day she was in the bathroom & a male CNA walked in on her & didn’t even apologize. She had enough & signed herself out immediately. My family filed a complaint with the state & I’m told that they were out within a week to do an inspection.
July 21, 2007 at 1:11 pm
For what it’s worth by way of encouragement — I was hospitalized for 7 months (on trach 4 months) in 1999 with GBS (age 50 then); for the first 3 months, I was completely paralyzed and only able to move eyes. My recovery was slow, but I was back at work (attorney) full-time by Sept. 2001 and have been about 95% recovered for several years. I still have minor balance problems and slightly weakened/stiff fingers, but other than climbing ladders and jogging (toe-drop would trip me up), I can do pretty much everything that most 58-year-olds can do — no wheelchairs, walkers, or canes. A little less energy than I had before the GBS, but I do not even need afternoon naps, just a solid 8 hours sleep each night.
By way of suggestions drawn from my recollections and that of my wife (who was my constant advocate in the hospital 12 hrs/day) —
Help the patient communicate by using a letter chart (A-Z in 5 rows + 0-9 across bottom) with the caregiver running his/her finger across the rows and the patient blinking or moving his/her eyes at the appropriate letter (write down the letters on a piece of paper).
Try to keep the patient in the hospital rather than going to a nursing home. Identify and emphasize any even minor medical issues that render nursing home care arguably inappropriate — i.e., feeding tube infections, trach infections, bed sores, elevated blood pressure, blood thinner meds, infections, need for chest x-rays to monitor pneumonia. See if there’s a hospital in your area that has a vent rehab unit and try to get the patient transferred there. In my case, the insurance required, as a condition of my staying in the hospital that I be able to do 3 hrs of PT/OT per day and that I make progress in the PT/OT towards being able to care for myself. My wife was able to convince the insurance people — with the help of sympathetic PTs and hospital administrators — that I could meet these requirements. Application of the standards seemed to involve a lot of discretion so being both nice and assertive in dealing with the insurance people helped. Re the insurance — ask the insurance company to assign a case worker or major-case-unit rep to the patient; most insurance companies will do this for major claims and the case worker/rep usually has much more authority/discretion to waive claim limits/requirements than the first-level claim processors. At my wife’s invitiation, the case worker assigned to my case visited my wife and I in the hospital and thereafter viewed me as a person rather than just a stack of papers. Argue to the insurance company that it will be cheaper for them in the long run to keep the patient in the hospital than to send the patient to a nursing home or home where the patient will develop multiple medical problems and need to go back into extremely expensive intensive care.
Find some favorite photos that the patient likes (particularly happy/restful photos like from a vacation or a picnic), blow the photos up to 8×10 or larger, and stick them on the wall where the patient can see them. The photos make the patient feel better and give the nurses/CNAs/PTs something to talk to the patient/caregiver about (making them think of the patient more as a person).
Try using a tape recorder/Ipod to play favorite (upbeat) music or books-on-tape for the patient.
If the patient has to do unpleasant or extremely tiring exercises (for me, I had to sit up in the wheelchair for 1 hour each day to strengthen my trunk muscles and this was depressing/exhausting at first), get some upbeat videos (perhaps exercise videos or music videos) to play on the TV while the patient is doing the exercises (watching Shania Twain videos actually took my mind off how tired I was).
Encourage the caregiver to talk on the phone to family/friends while the patient is in the room listening to the caregiver’s end of the conversation — this gives the caregiver moral support and, at least for me, overhearing the conversations made me feel better.
If the hospital day seems exhausting for the patient and/or caregiver, try to get all the hospital staff to agree to one hour each day when no one will come into the patient’s room (perhaps around 2:00 in the afternoon) — put a sign on the door — and then let the patient and caregiver sit quietly doing nothing during that time (perhaps the caregiver could read silently or doze in a chair and the patient could listen to a CD or nap).
If there are local friends/family who would like to help, set up a calendar and schedule people to come to the hospital on specific days/times that work best for the patient/caregiver. Initially, my wife scheduled people to come during the rest-hour and my wife would go down to a quiet room somewhere and nap or take a quiet walk. As I started recovering, my wife scheduled people to come during lunch and dinner to help her feed me (which was more a rehab exercise than eating as I slowly regained swallowing and gag reflexes).
If you have not done so already, contact several people through the GBS Foundation who, like me, have gone through this experience and are happy to talk on the phone with additional tips/suggestions as new issues constantly arise. There are probably GBS veterans in your area who could even stop by the hospital for a visit — one of my few positive memories from my time in ICU was when a local attorney who had survived a severe case of GBS 20 years earlier visited with us for about 30 minutes. Just seeing this healthy, active person made my wife and I feel much more hopeful.
AnonymousJuly 21, 2007 at 1:58 pm
I agree with everyone and wanted to add it’s always okay to kinda “kiss the staffs butt” (excuse me) but my sister used to bring in an occasional box of chocolates, cookies or donuts and I swear the nursing staff gave me extra attention. She always made sure to make the rounds of different shifts since I was in there for 5 weeks and she is the head of a PT dept. at a big hospital in Pasadena CA so she knows how they operate. I totaly agree about working the insurance angle speak with the PT, social worker, and doctors to advocate for you as well to stay as long as possible even if they say it’s not their area they can write reports showing the necessity. Good Luck, she will get better with time it’s just a long road.
AnonymousAugust 3, 2007 at 9:34 am
Hi Shelley. My 73 yo mother has refused to give up after her 10/2004 diagnosis. She had an extremely severe case and was told by so many – neurologist, pulmonologist, even now her PT’s admit thinking it but not saying it – that she wouldn’t get off the vent, she wouldn’t walk, etc. etc. We’re approaching 3 years since diagnosis. My mom has been off her vent for 3 months now and they are weaning her off her trach. She can walk about 50 feet and continues to improve in ways that surprise everyone who tried so hard to give up on her. The biggest thing that’s helped her -and us – is her determination to improve. She believes she will improve. She believes she will walk. She holds a fantasy image of walking into the ICU and introducing herself to the neurologist who told us all that she would never walk much. She has had a sign hanging at eye level from the beginning “Never, ever give up”. I believe her belief in improvement is her greatest contribution to her recovery. Some say, “I’ll believe it when I see it.” Encourage yourself and your loved one to think instead, “I’ll see it when I believe it.” It works!
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