Do some people never recover?
AnonymousOctober 6, 2008 at 1:35 pm
Do some people never recover from the nerve damage? My sister has been on a respirator for 14 weeks now. She also needed a pacemaker installed about 4 weeks ago. My brother left FL about 4 weeks ago to visit grand kids in N.E. and returned last week to FL. He called me after 2 visits with our sister and was very depressed because he could’t see the slightist improvement to any of the affected limbs. We keep telling her that it is extremely slow and requires a lot of work from all of us, especially her. She can shrug her shoulders, which I tell her to keep doing that and moving any areas that she can, as over time, the control should spread out slowly. Am I right? Will this happen?
Secondly, her husband is with her everyday, from 8 A.M. till 6 or 7 at night. He rented a small apartment across the parking lot and goes there to sleep on an air mattress. My brother says he appears to be getting “burned out”, but says he can’t take time off for himself, because he can’t sleep at their home without her being there. (They have been married for around 36 yrs). We are concerned about his health also because of the stress. Any Ideas?
AnonymousOctober 6, 2008 at 3:05 pm
There’s always hope.
The somewhat worrisome news (which you’re welcome to skip for the time being): I’ve seen people who were completely paralyzed (including being on a ventilator) with GBS make essentially complete recoveries. I’ve also seen some with only minor problems continue those problems for the rest of their lives. There’s no easy answer regarding how far recovery will go: it depends on which nerves are damaged and where those nerves are. It takes a short time for the nerves to be damaged, but a longer time for them to regrow. and depending on which nerves are damaged, it will take longer for that recovery to be apparent. (It may even make you think that there has been no recovery, but bear in mind that appearances can be deceiving.)
Okay, enough for the bad news. Now the better news.
When you see someone you love lying in a hospital bed unable to move, you can only think the worst. But you, your sister and your brother-in-law need to be reassured that the vast majority of GBS patients improve greatly and return to normal life, although it may take a while to see that improvement.
These are early days (although, I know, they seem like an eternity!). Encourage your brother-in-law and your sister that what they see today isn’t the end and won’t remain as it is. Quoting one of the corniest lines in all of Holywood: Tomorrow is another day! 😮 The worst is over. Now comes the improvement — slowly, but it will come.
Best wishes in the battle,
PS: I’m on the other end: I’m a CIDPer and have slowly progressed until I’m now in a wheelchair. Even in this I’ve found ways of dealing with the disability, and am able to work full-time and, with my adult son (who also works), care for my disabled husband. (PS: my husband and I just celebrated our 36th anniversary in August. Wish your sister and her husband a happy anniversary for us!)
AnonymousOctober 6, 2008 at 7:20 pm
You are correct in that you need to continue to encourage all movement. By moving what she can it will increase the range of motion to the area as well as continue to refine the fine motor. My therapist used to tell me if you don’t ask the body to do it it won’t on it’s own.
Her husband has to be getting exhausted. Is there anyone from the family who could stay at the hospital and then someone else take him away. Is there anyone at the hospital such as a social worker or spiritual care for him to talk to, to be able to express his feelings and fears? When I was diagnosed my husband went thru a very difficult time as well where he wasn’t sleeping and he asked for help and got antidepressants which helped to calm him. When you are sleep deprived it is hard to cope with simple things so you don’t want this to go to far or he won’t be there to be able to support his wife. I am not saying drugs are the answer but they do help in certain situations. It is so difficult to stand by and watch. Sometimes writing in a journal helps to keep track of things and allows for the expression of feelings.
AnonymousOctober 7, 2008 at 4:11 am
Perhaps if you and your family start thinking in terms of “this time next year I will be much better” rather than looking at days or even weeks and months. It takes a long time for nerves to regrow and it takes even longer for your body to realize they are there. Yes, physical therapy, asking your body to remember how to do things, is important to the best of the patient’s abilities but not to the extent of exhaustion. [B]It’s a marathon – not a sprint[/B].
As for your brother-in-law… I could be totally wrong but my first impression is that they have been married a long time, he probably can’t envision life without your sister and by staying at their empty home it is forcing him to confront that. He is stressed out enough dealing with your sister’s illness and confronting the possibility life without her is probably beyond his coping skills right now, and likely will slip further away the less sleep he gets. It also sounds like he isn’t working which has it’s good points and bad points… my husband was pretty freaked out when I was paralyzed head to toe in the hospital but the fact that he had to work and come home to take care of the house and pets forced him to have some semblance of a normal life. That added stability probably kept him from spending the night in the hospital with me and going over the edge. He also likely feels helpless, unable to do anything for his wife and unsure of how things are going to end up. So… that being said, please take it for what it’s worth – an assessment a thousand miles away after a brief description by someone who isn’t even close to being a psychiatrist. :rolleyes:
So what to do… I know how hard it is to turn someone away from a pattern they feel necessary to them and yet for his health and the ultimate health of his wife he needs to start taking back control of his own life. My suggestion is that you start introducing the idea of what your sister will need when she gets back home. It may still be several months away but some home improvements take time and may require him to actually be around the house. Do they have handicap accessible bathrooms? A wheelchair ramp? Do they have stairs and need a stair lift? There are folks at the hospital who can help him with an assessment list with a wide range of possibilities depending on her level of self-care once she finally gets home. Perhaps he can refocus some of his worry and fear into creating a welcoming and supportive environment for your sister. I know I was so grateful my family and friends cleaned my house and moved furniture around so I could get around in the wheelchair/walker once I finally got home. They also installed a chair lift and redid the front walkway to make it wheelchair accessible. It may be that there isn’t anything to do at the house or he can’t think that far ahead just yet, that’s OK too, but there may be other things he could do that are less invasive – like repainting that room they’ve been meaning to do for the last 5 years etc. The idea is to keep reinforcing the connection between his wife and the house – she is definitely coming home, to their home.
It also may be that he feels that if he isn’t there with her at the hospital the entire time then she won’t get the right care, or it won’t come at a critical moment. I’ve felt that way before too and spent the night at hospice care with a dying relative… it’s probably not true but if he does believe this encourage him to make a list, or several lists, of Do’s and Don’ts and then spend some time educating the rest of the family so that they can take over during the day for him. Just knowing that someone cares as much about his wife as you do about your sister is probably already a big relief to him.
Finally, once your sister does finally get home there will be many things your brother-in-law has to do for her that he isn’t accustomed to. It’s sort of like he’s heading into his own marathon and so he needs to prepare health-wise as much as he can before she actually gets there. This is the time when he needs to be taking a walk every day, using the stairs instead of the elevator and so on to build up his stamina and strength. If she doesn’t come home for another 12 months… well then he will be that much stronger and better able to take care of her when she finally does get home.
You are a good person to think of your brother-in-law and your sister in their time of crises. Many families are unable to deal with the stress of their loved ones being ill and so just pretend it isn’t happening. My hat is off to you for being a good brother – I’ve got a good brother too. 🙂
AnonymousOctober 7, 2008 at 10:47 am
I was going to post my thoughts to you but then I read what Julie offered and I had much the same ideas. Your brother in law does need to think about himself. He needs to be reminded to take care of the caregiver. I use a quote in my work that says “Be prepared to offer support. Be prepared to accept support.” Remind him how wonderful he is for being there for your sister and let him know that you are there for him!
Perhaps you could offer to spend the weekend with her sometimes or her children could, a parent, another sibling, and then he could go home and rest. He might be surprised at how well he does sleep there….
Give him specific things to do at the house. Perhaps he could gather up some of her favorite things and bring them to her. I so loved having some special things around me. One of my favorites was a bottle of perfume a friend brought to me so that I wouldn’t smell like “hospital” when my husband and family were around. Come up with things that need to be done around the house. It is fall. Are there leaves to rake? Air conditioner to cover? Plants to pull out and pots to put away? Sometimes, as we lie in that bed, we think of all the things we would be doing if we were at home. It may bring your sister a sense of comfort if your BIL could go home and get these things done for her. This may sound silly, but I know it it made me happy to know things were looked after at home. It would give your BIL another sense of purpose.
Hope this helps even a little. Take good care.
AnonymousOctober 7, 2008 at 12:26 pm
I went down to Fla and spent 8 weeks with my sister, but now I am back north. I have asked my BIL if he needs me to come back down or if my sister wants me to come back down. He says it’s not necessary at this time. My brother lives down there and goes over to give him a break on the week-ends. It’s about an 1 Hr drive for him. For me it’s a 21 hour drive.
AnonymousOctober 7, 2008 at 7:12 pm
I don’t have GBS but CIDP but I just wanted to wish you and your family my best and hope your sister gets well soon. It will take her some time for healing and the more she is able to do the best of her chance in recovering. Lets just hope she starts getting some improvements soon and gets well soon. I will keep you in my thoughts.
AnonymousDecember 6, 2009 at 6:12 pm
She started to feel the first sign of recovery back in Jan, Feb, & March – Pain. But then started to lose the feeling. In July, she again came down with Pneumonia and while in the Hospital, 1. Got tested for Nerve damage. 2. Had CAT scans done and they found a small cancerous mass in her neck.
They couldn’t treat the Cancer because her body wouldn’t handle the CURE, and the testing of the Nerves confirmed her nerves have been severed and would never recover.
We took her home after the Pneumonia was cured and she survived 5 months.
Now she is in Peace.
AnonymousDecember 8, 2009 at 2:32 am
We are saddened by the news of your sister’s passing and all that she has gone through physically and emotionally. You say that her death was peaceful and that is a blessing. I hope very much that it was peaceful for her as well as for you and her husband and all those that loved her. It is very hard to know how serious a condition irreversible nerve damge or cancer are, but it is good to have time to tell people and show people how much you all love that person in this time. As someone who takes care of children with cancer, i often tell families that death is not the enemy–lack of love is. I know from what you wrote before that your sister was very, very loved. Love transcends death. it persists and sustains. You will get comfort from the shared love as the pain of the missing of her recedes. Please know that if you or any of her family want to touch base with the people of this forum, we are here for you.
WithHope for a cure of these diseases and cancers
December 8, 2009 at 9:38 am
Oh I am so incredibly sorry to hear this news. My condolences to you and your family.
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