New here with my Dad
AnonymousAugust 17, 2007 at 11:21 am
My dad was diagnosed on July 4th. After 6 weeks, he is still on a ventilator (through a tracheotomy) with no movement at all below the top of his shoulders. He has daily physical therapy and seems to be in good hands.
The mental part of all this is not going well. He is very depressed and nothing we try or say or do helps at all. The monotony of it all is taking its toll on him and he seems to be shutting down even more.
Is this a common occurence with GBS? I’ve never known him to be depressed before, but I can totally understand why this is getting to him. Is there anything we can do at all?
AnonymousAugust 17, 2007 at 12:00 pm
Hi LovemyDad, Welcome to The Family. Has your dad had any ivig or plasma exchange treatments? Is he in Pain, if so is he on meds? Antidepressants work good on pain as well as mental depression. Make sure the atmosphere around him is a Positive one, it will make recovery better, easier. Make sure he is kept updated on his condition, weather, current events. Music, recorded books and so forth will help pass the time. He needs to feel like he is still in the loop of life. Just make sure that he can be comfortable with noises before turning on music, tv and books and so forth, alot of gbs/cidp patients are very sensitive to noise during recovery, as well as touch. Ya might say it can get on our last nerve;) pt/ot is good, everday stretching and range of motion is best. Recovery is slow in alot of cases, time is not important. We like to say gbs stands for Getting Better Slowly. Rest is the best medicine at this stage in his recovery, the more the better, it helps the nerves heal and regenerate. Ask as many questions or just vent if you need to, we all understand.
AnonymousAugust 17, 2007 at 2:23 pm
You might try printing out some of the more relevant posts in this forum and bringing them to read to him in the hospital. My husband did that for me when I was lying there with tears rolling down my face in frustration. It really helps to hear that people DO get better, people DO feel the way you feel and there is a support group waiting for him when he is well enough to type. It is very hard not to get depressed when this happens relatively suddenly, in the grand scheme of things he hasn’t had a whole lot of time to adjust to his ever changing body.
If he is no longer in ICU here are some other little things that helped when I was immobile and ultra-depressed:
music and books on tape (or IPOD)
bring a lamp in from home – those hospital lights are very harsh in the middle of the night
bring in a pillowcase from HIS bed (just make sure you grab it back before they wash it.)
OUTSIDE FOOD, assuming it’s allowed the best day I had in the hospital was when my husband brought me a McDonalds cheeseburger and shake. I’d been feeling very sorry for myself and that helped.
This worked for me because it’s in my nature to be silly so my husband put little stickers all over my walker, the bed rails, toilet etc. mostly dog related but they still made me smile.
And finally, I don’t know how comfortable he is either – there are a myriad of things that feel cruddy from unimaginable pain to minor discomfort and when you package them all up in a body that can’t do anything about them it’s very frustrating. Ask him what you can do to make him more comfortable. Is his skin dry (mine was), does he want you to shave him (I mean you, not the nurse, nothing like TLC…), bring him some ear plugs if it’s too noisy there.
I don’t know if any of these things will help but I truly feel for your Dad and I hope he can see some light at the end of the tunnel soon, no matter how far away it is…
AnonymousAugust 17, 2007 at 4:48 pm
Hi there! I am going to do a quick post here just in case you want to share with your dad. I am in my fifth month post GBS and just this past week FINALLY had a change in my walking! I am so excited I can’t stand it. Six weeks is a long time, but obviously not by GBS standards. I was going back and forth being depressed about it thinking it’s never going to get better to just trying to deal with my life as it is now. And even now sometimes, if you ask if I am better, I don’t think I am on a daily basis. But if I think back to where I was, of course I am. So please share with your dad that as hard as this is, it does start to go away at some point. Just no one can tell you when that will be! This has been a long 5 months for me and I have worked very hard to get where I am. So, let him know it will go away! Like someone said, you may want to print some of these out to show him you aren’t making it all up:) Gabe
AnonymousAugust 17, 2007 at 5:27 pm
lovemydad, Welcome! GBS is an emotional rollercoaster. He is at the pit of despair now and it would help to read him GBS info on recovery. For all the things that cause paralysis this is one of the better prognosis. I remember the relief when I finally got my Diagnosis and realized there was hope. I agree Zoloft is an excellent antidepresent. Cymbalta is also another good idea and it has an indication for neuropathy pain also. These meds take 2-4 weeks to start working so may be a good idea to start now. But, his best antidepresent is family’s love and the hope of a good recovery. These you can give him. Be present. My husband hardly ever left and this really helped. Did he recieve ivig or plasmaphoresis? Let us know if we can help. This forum has really supported me. Dr. Shawn
AnonymousAugust 17, 2007 at 5:58 pm
I was wondering if there is a GBS Liaison in your area that could come and visit your Dad. Often when a patient sees someone who has had GBS come into their room and speak to them, it makes a world of difference. Liaisons also bring some literature with them that can be helpful to the family and patient. If you send me a pm to let me know where you live, i will send back info of a liaison who may be able to visit you if you want them to.
AnonymousAugust 17, 2007 at 8:04 pm
Welcome to the family LovemyDad. Look likes you have already received some very sound advise. Remember there is always hope. Help you dad to understand that things should get better. Someone else said that GBS really stands for Getting Better Slowly”. The point is you do get better.
AnonymousAugust 18, 2007 at 2:37 pm
I know exactly how you feel. My mom is now in her 12th week of GBS. A few weeks ago, she was super drepressed and just kind of shutting down. She had a trach and the ventilator and a feeding tube. Then, it just seemed to happened overnight almost- she started breathing for long periods of time on her own and they finally were able to feed her real food and now, she’s in a rehab facility! It did not seem possible a few weeks ago.
I know she didn’t believe any of us when she said she’d recover. She kept trying to ask if she was dying or if she needed surgery or if she’d be in the hospital for the rest of her life. She was scared and depressed and couldn’t communicate.
Make sure your dad knows he will recover. Make sure he knows you understand how devastating this is for him, but remind him he is getting better. Even the simplest things like being able to move one finger, is a huge step. Just try to make sure he believes he will get better and he will get better (slowly, but surely!).
My thoughts are with you.
AnonymousAugust 18, 2007 at 3:32 pm
I am so sorry to hear about your dad. I feel we all have to go through emotions before we can start our walk back from GBS. I went through anger, mental pain, The why me’s, angery at god my love ones. I saw myself as hopeless and nothing.
Let your dad feel your love let him see your love and above all do not patronize him. .at this time he is haveing a battle going on within himself and he will come to terms with it. one thing he needs to hear over and over is you will recover from this. but also he has to realize it may be a slow recovery. I was blessed as mine was only in my feet. but in less than 9 months I had to have a triple by pass. bring him love be there for him and turn him over to God of your choice. I send my prayers and thoughts ( Steve)
AnonymousAugust 19, 2007 at 2:14 pm
Welcome LovemyDad and you are a new member of this large family now. Let us know what we can help you with as far as questions there is no stupid questions. We also love our care givers so take care of yourself and for now share the load with other family members and friends. I agree the most important things it to keep things ++ positive ++. Healing takes so long for us to see results. I celebrated the tiny parts of healing too!
Exhaustion was the worst part of this for me to handle. No matter what I did to control it did now work and still does not. It is like having the flu for months and years. It controls me every day. If I over do it, I am reminded for several days after that I did too much so a Journal helps me thing what I have done the last few days. I have learned to pace myself. That is getting much much better and I see my self still doing better 22 months after my onset of GBS. When we say exhaustion we are talking 100 times greater than just tired. Times when your arms are heavy and just are too weak to lift a half cup of water to our lips to take a pill. I know I was not doing that much when I was a month into this illness. Hang in there and keep things possitive for yourself too. You will have alot of stress to deal with when caring for him when he gets home. He is saving his energy…start to pace yourself now for things ahead of you. This is very hard on our care givers and we can not be without you!
AnonymousAugust 20, 2007 at 2:11 am
Welcome to the forums Lovemydad!! Sounds as though the previous posts have given you a lot of good advice to get started with. The people on these forums are wonderful and have a great amount of knowledge that they are more than willing to share. We are all here for you and your dad. Post often, good days or bad, and let us know how yall’ are doing. I’ll keep you in my prayers!:)
AnonymousAugust 20, 2007 at 10:01 am
Thanks everyone so much for all the great thoughts and advice! I talked to the Dr. about starting him on an anti-depressant, and although the Doc is hesitant, he isn’t going to totally write off the possiblity. We are changing up his daily therapy and his physical surroundings in hopes that might help. There is a construction site next door to where he is and we think he might enjoy watching the action next door (actually, he’ll probably be telling them what they are doing wrong!).
He has had the avig, they actually did it early on. His onset was so fast, (it was a matter of hours that his arms and legs were paralyzed, and within 36 hours it was from the next down) St. Lukes just jumped on what treatments they could. He is now in what they called a “long-term care hospital”. More than a rehab facility, less than a hospital (?) Since he can’t move from the neck down, talk, eat or do any other normal human functions, distraction is limited. he does watch movies and listen to music and likes that.
Last week we had a big emotional setback, my cousin and her entire family of 4 were killed in an auto accident in Cancun, Mexico. My mom and I will be travelling to Arkansas for the services this week. While dad of course logically understands that he can’t go with us, it was still tough on him. And he can’t comfort my mom much and that hurts him too.
thanks again to everyone, i’m SO GLAD I found this wonderful place!!!! 🙂
AnonymousAugust 20, 2007 at 11:44 am
Lovemydad you are doing a great job being the advocate for your Dad. I do have one thing I want you to watch. “We are changing up his daily therapy.” Don’t let them do too much at first other than just move the larger muscles groups like the arms and legs. Just to move things now that keep him from cramping as the signals from the nerves start to reach the muscles themselves and can get motion back himself. Right now it is more imporant that he RESTS that is what is going to help the nerves start to heal. Right now they should be just moving each finger a few times each visit and the ankles. Never over doing the the movement in just one area for too long, but trying to keep all joints moving. You might not see much results but that keeps all areas from from locking up. Right now they will work the tendons, ligaments and later the muscles will come back and can not be rushed. Rush them and they burn up more energy than he has since the cover to the nerves is letting that energy escape. Is he being fed thru a feeding tube or on soft table foods? I was still on the feeding tube at that time in my recovery. I was just starting to take a sip of water to wash down a pill. I was also just being moved to the same care unit as he is in now, so I think he is doing very well. Sounds like he is frustrated. I can tell you that you don’t get any sleep in a hospital with all the noise 24/7. He will get better bed rest when he gets home and will still need it. I am sure he is worried about you and your Mom and worried about all the stuff at home that he normally does. To add tradegy and loss to things has to be really hard on him because his brain is working in high gear. The body can not keep up and taking away his freedom and independence has to be really hard. Not being able to go to the memorial does not give him closure. Maybe you could tape the service to show to him at a later date. Seeing other family members and friends and hearing kind words about the deceased might be of great benefit. Maybe he would like to have you say a few words or have someone read a note from him and how he knew and felt about these special people? That way atleast he can feel he was a part of the service. It might help him thru grieving. Try to releive the stress of every day with humor. Keep things possitive. 😉 It is the best medicine. Keep up the good work while you take care of your Mom and yourself! We are here and thinking about you and your family. Your cyber family also sends your family our sympathy on your loss. I am glad you and your Mom have decided to attend the service.
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