New to this site (my husband’s story)
AnonymousJune 8, 2006 at 5:19 am
I am a very new caregiver to a GBS/MF spouse. My husband was admitted to hospital on 5/16 and finally diagnosed with Miller-Fisher Syndrome on 5/20. He has completed the IVIg therapy and is now in Rehab section of the hospital…off of the heart monitors and out of danger of any further decline in his life function.
Can anyone give me any advice on coping with all of this? Please help. We have 3 beautiful daughters at home (17, 3&1/2, 11 months). I also have to care for my 91 year old mother-in-law who is handicapped. I have to be able to work just to try to pay the bills. Not sure I’m going to meet that obligation very well. I’ve signed up to work some over-time next week to try to help a little, but I feel very guilty and like a bad wife when I’m not at the hospital caring for RJ…I feel as if I’m neglecting my duties as his spouse.
Then there’s the guilt of spending most waking moments away from work at the hospital with him and the terrible overwhelming feeling like I’m neglecting my two little ones (the 17 year old is his daughter from a previous marriage). I feel like such a horrible Mommy and I’m failing miserably at motherhood and wifehood.
I’ve lost 10 pounds since RJ was hospitalized. I know we are just beginning this journey into his recovery and that I have a super-long road ahead of us. I only get about 3 hours of sleep for every 24 hour day. My drug of choice right now is caffeine, but it’s wreaking havoc on my migranes. I hadn’t had a migrane in over 8 months until RJ got sick. I think it’s probably the stress. I have knots in my stomach and cannot eat/or eat very little. MY DOCTOR is concerned because I’m borderline for going underweight (history of gastric bypass surgery) and get very run-down very quickly without all of the added stress. He’s actually so concerned, that he stops by RJ’s hospital room daily when he’s doing rounds to check on me. He is not RJ’s doctor.
Help, what do I do next? I’m falling apart…emotionally, physically, mentally. Right now I just want to cry!
AnonymousJune 8, 2006 at 5:40 am
Lindsay I am sorry you are going through a rough time. You need time to yourself. Does your husband have any brothers or sisters that can help you take care of your mother-in law. Maybe she should be placed in a retirement home. You have to much on your plate right now. Get help from family and friends neighbours anyone you know that will help you. If your husband can speak talk to him. Let him know you have to do overtime so you can’t be there. But that your heart and mind will be with him. Your 17yr old daughter could help you alot she is at an age were she should take some of the responsibility to help you. Your no good to your husband if you land in the hospital. Is there a way you can get counselling? It makes a big difference. I get counselling do to personal stress for about 6yrs it helps me alot. Can your Dr give you some antidepressant (sp?). There will be other people posting later I am sure that can help you more take care and I wish you the best.
AnonymousJune 8, 2006 at 5:51 am
My husbands brothers are both deceased (one 40 years ago, the other just this past February). My mom lives in Georgia and my sister in Ohio. RJ can talk and we have about the kids and the finances. He wants me to spend all my spare time at home with the girls. He knows that I am working overtime and has only asked that I come visit him before I go to work in the evenings (I work 2300-0700). Putting his mom in a nursing home is not an option. RJ won’t let me, and I really don’t want to. She enjoys her grand-daughters immensley. The 17 year old helps greatly with the little ones, but I worry about her burning out trying to help me care for her sisters and grandmother while I try to work and take care of their Daddy and them too.
I’m dealing with this okay. Really don’t want anti-depressants, just someone to talk to…that understands. My doctor has been great thru all of this.
RJ feels that the hospital is taking great care of him and I should spend my time taking care of our kids and that he’ll be okay. I just can’t help but being torn between. God, I just wish I could lie next to my husband and have his arms around me and just hold him close…then my girls could come jump on us like they used too…and we could all laugh and giggle. I really miss that.
AnonymousJune 8, 2006 at 6:01 am
I am so sorry. Your husband is a great man listen to him. Don’t feel guilty if your husband wants you to spend time with your children do it. It will make him feel better. I know my Dad is in the hospital for 2 weeks now. He had a major back surgery that took 5hours instead of 2 and then he got 2 strokes. He is 75. We all wish my Dad was home but he is recovering from the strokes but we know they we try to rehabilitate him and there not much we can do for him but visit him to let him know he is loved by all of us.
AnonymousJune 8, 2006 at 11:55 am
My heart is breaking for you.. I understand the pain and suffering this syndrome causes. My Mom was hit with GBS SEVERELY 2 years ago.. I had a 2 year old and an 8 week old and the stress was beyond comprehension.. The drives to the hospital, making sure my boys got to see a mom not crying all the time and the constant worrying was awful. I Did get an antidepressant and it was the best best thing at the time for me. It allowed me to stop crying all the time, took away the depression and therefore I was a better mom, wife and daughter for it..
Your husband will recover.. My Mom is now home and is still making recoveries.
Try not to spread yourself to thin.. Your girls need you. Your husband will get the care he needs.
There are also mamy meds they will allow you to sleep at night.. It will stop the anxiety and shut your mind off at night so that can rest well.
If I lives closer I would love to help you with your girls. I know how hard it is.. Please rely on this site for knowledge.. There are experts here.. This site saved me 2 years ago.. I educated myself here and am so thankful.
Please know there are prayers going out for your husband.
AnonymousJune 8, 2006 at 11:59 am
You’ve made the first step by coming here to talk to us. We become a big family who will help as much as we can.
I can understand how you feel about wanting to continue helping your husbands mother. My mother is 87 and not well. I live with her and as long as we are able to care for her in her home, she will not go to a nursing home. It is not easy for me though because I have the syndrome called CIDP and still depend on a wheelchair and a home care agency. It’s difficult for me to take care of myself and put my own needs first. You just have to remember though that if you don’t take enough time to care for yourself, you cannot care for others.
Caring for yourself has to be your first priority. Relax in a bubble bath.
Since the financial burden is falling on you, I think that should be your second priority, learn what you can handle though, don’t let yourself burn out. Find out if your husband can apply for SSDI and if the costs of mediications are a problem, go to a site like needymeds.com
See if you can make one day a week the special day to spend with your children, bake a cake or cookies together that you can take to daddy. Fun ideas will come to you.
Don’t push yourself to go to your husband every day. These new cell phones do so much now, if you can afford one for your husband and one for yourself, it’s a way you can see each other and say good morning and good night.
Not one of us here will think you are a bad wife or a bad mom.
Here’s a group hug,
AnonymousJune 8, 2006 at 1:51 pm
Cellphones are great for communicating my BF and I wre going to be married and I cancelled the wedding cause of my personal setbacks.but we have grown closer and learned to function better. and maybe you should take time out for you and do something pampering get a pedicure or go for a walk and leave the will and stress of the new situation to a higher power and enjoy each other as you both are. be there for him and do what you can do for him by also taking care of your self. that does stress him out alot more than you realize.my BF took care of me and fussed and was stessing me out cause he put the stff he enjoyed on hold that allowed him to get rid of his stress and worries. now we have boundries and are allowing each other to be alone and taking care of each other in ways that are healthy and loving. you have the support now so use it and all of us will assist you in your hardship!
AnonymousJune 8, 2006 at 6:48 pm
Hi Lindsay and welcome,
You are definetely spread way too thin. I would try and get as much help as possible from family, friends, neighbors etc. I have always had a hard time asking for help from others but needless to say I have learned quickly. We are here to help however we can. Where are you located (big city nearby??), perhaps I can get you in touch with a GBS Liason in your area who you could have for some support??
Take care and come back often.
AnonymousJune 8, 2006 at 7:10 pm
Welcome to the Forums.
As a caregiver for 6 years ,I speak from knowledge. In the beginning, I thought I could handle it all. Wrong. My husband was an angel and sent me to Florida to be with my Mom who was dying, they were in the hospital at the same time. I felt guilt like you couldn’t believe for leaving him in the hospital.
But my 3 adult sons stepped up to the plate and cared for him while I was gone for a few very short days, Mom passed away, I brought her back to New Jersey for burial and then got on with taking care of Frank. I had to leave my job and money got real tight, I lost out on a great work position, but I have never regretted staying home to care for him 24/7. I started losing weight also, couldn’t sleep, couldn’t cope with alot of things and I burned out.
I needed help and didn’t know what to do. I then decided I needed my sons to do more for their Dad so I could get out of the house once in awhile and do things for myself. I stopped feeling guilty after my major meltdown.
It was then I realized I wouldn’t be doing Frank any good if I got sick from the emotional roller coaster. If you have any one, anyone who can give you a break every now and then, take it without guilt.
I know this is so very hard for you, but it will settle down in awhile.
Please take care of yourself. 🙂
AnonymousJune 8, 2006 at 8:23 pm
Just over a year ago, I had to hold down a full-time job in the city while dealing with my fiance on life support for three weeks and inpatient rehab for two weeks with a very severe case of GBS 40-miles away in a suburb I wasn’t familiar with. At first I didn’t even have a car to go visit him, so I had to take the train every evening after work, have a friend pick me up at the station, visit Ben for an hour, take the train back to the city and grab a cab home at 9:30 at night. I was very happy when the neighbors across the street gave me their car because I couldn’t drive Ben’s stick-shift that was in the garage. Like you, I lost ten lbs. in the first couple weeks that most people didn’t think I had to lose. I had that exact same knotty feeling in my stomach that you described; I always attributed it to lack of food because I couldn’t bring myself to eat. I’ve only admitted this to one or two other people, but a year later I still have trouble with the eating problem, even though Ben is doing so much better.
Everyone else is correct in saying that you have to take care of yourself and keep yourself strong, but I know that’s easier said than done. The best you can do, and what I did, is stay strong and positive for your sweetheart for as long as you possibly can, and know that there will be plenty of time to break down later. As long as there is no evidence of him declining, then things can only go up from here. Don’t be afraid to ask for help from co-workers, friends and neighbors. My family is all back in Tennessee, but I found plenty of loving people who stood beside me during that very dark time in my life, including my GBS family right here on this forum.
Please follow up on Jerimy’s suggestion and have him help you get in contact with your local liaison.
Best wishes to your family,
AnonymousJune 9, 2006 at 8:08 am
Our site, GBSFI, does have a liaison near Denver, she is located in Broomfield 303-438-1428- Ann Brandt
Also, another site [url]www.neuropathy.org[/url] has a support group in Denver. If you wanted to look at this site, you may have to join.
CALL: Janet Leiner 303-671-0932
I think both of these people would help you one on one.
AnonymousJune 9, 2006 at 12:18 pm
[FONT=Century Gothic]Here is the contact information for the GBSFI liasons in Colorado, you will have to decide which is closer to you:[/FONT]
[SIZE=2][FONT=Century Gothic][COLOR=black]Ann Brandt[/COLOR][/FONT][/SIZE]
[LEFT][FONT=Century Gothic][SIZE=2][COLOR=black][B]Northeast part of the State:[/B][/COLOR][/SIZE][/FONT]
[FONT=Century Gothic][SIZE=2][COLOR=black]Tom Ballard[/COLOR][/SIZE][/FONT]
[LEFT][FONT=Century Gothic][SIZE=2][COLOR=black][B]Colorado Springs:[/B] [/COLOR][/SIZE][/FONT]
[FONT=Century Gothic][SIZE=2][COLOR=black]Jean Archer[/COLOR][/SIZE][/FONT]
[LEFT][FONT=Century Gothic][SIZE=2][COLOR=black]I am a liason here in Michigan but I would also be happy to help however I can, if needed. You can email me through the forums. Take care.[/COLOR][/SIZE][/FONT][/LEFT]
AnonymousJune 9, 2006 at 4:33 pm
I am in a similar position and experiencing the same feelings. My husband has been on the critical ward totally paralyzed now for five days. They put in a stomach tube and tracheotomy today. All he can do is roll his eyes. Last Sunday he was feeling fine and this all happened between 9 a.m. and 2 a.m. that day.
I am the bread winner in our family because John has retired early so he can care for his mom with Alzheimer’s at home. We have a small poultry and tree farm with lots of animals. I had to get up and go out in the hall and walk around yesterday to keep from crying in front of John and his Mom. I don’t have any advice for you – just want you to know that you aren’t alone in this. I have gone from high hope when the doctor thought that John was going to respond quickly to the treatment to the depths of despair yesterday when he didn’t and they now say he has an acute form of this and may be like this for weeks or even months. Like you, I really do not want to put Mom in a care facility. If this ends up being a long term thing and I have to go back to work before John can come home and care for her, I’m starting to look for people who might be able to stay at our house during the day while I’m at work. Friends are also helping. John did most of the animal care and so far I’m keeping up with it, but I will ask for help or sell animals if I find I can’t cope. This morning I went out to change the water for the Mama goose and her baby. The wind blew the pen door open and the baby goose got out. When I went out to herd him back in with his Mama, all the male geese attacked me. It wasn’t anything life threating, but they could bruise and pinch me pretty badly and I was afraid. My farm collie ran between me and the geese, barked right in their faces and made them back up. I discovered today that there is more than one kind of guardian angel. I signed on to this forum so that I could talk to someone who has experienced what John is experiencing and tell me what I can do to make it less terrible for him, but I am too stupid to figure out how to post my questions. I have managed to figured out how to reply. Reaching out to others who understand helps and makes me feel less like I’m wimpy and not strong enough to help much or get through this without falling apart. My husband is 60. I’m scared.
Carolyn in Nebraska
AnonymousJune 9, 2006 at 4:51 pm
When you go into a section of the forums such as this one “Main Forum”, you will see a list of all the topics (called threads). On that page with all of the threads will be a button near the upper left corner that says “new thread”, click that and you can create your own if you want. I hope that helps, if you have any questions please ask. Take care.
AnonymousJune 10, 2006 at 10:30 am
Financial problems on top of worries regarding your husband is very stressful. I would look in to social security and private disability through your husband’s job. You guys may need it for awhile.
Also, I agree with everyone…you absoultley have to rest or it will negatively affect your health.
Your mother in law is probably having a hard time with everything too…it has to be tough for her to know her son is suffering with such a terrible disease.
Last but not least, the kids need someone to talk with. I have two children. They both devestated when I went to the hospital several times. Looking back, I wish I would have encourged my sister (or someone else I trusted) to spend some time taking them to the zoo or somewhere else fun so they could talk and share their concerns. Kids don’t know how to cope with these things. They may feel like their daddy is going to die. It’s important to reassure them he is going to be well again.
Take care & Good luck.
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