Caregiver For 6 Years

Good idea, Brandy! I could use some ideas to help my caregiver feel better. I’m 8 months into GBS and not able to stand for long; however, I walk with a walker. Anyway, Ken does all the cooking, the dishes, the cleaning, the washing and helps me with my shower. He gets out to do the shopping, etc., but doesn’t leave me alone too long. He gets many accolades from me, our friends and relatives for being a super husband, but, those must just sound like words to him sometimes. What did your very special guy, Frank, do for you that helped you through the rough times?

Brandy,

What a loving wife you were to your Frank. I hope it comforts you to know what good care you took of him when he needed you most, and that he must have known how very much you loved him.

We value your continued participation in the Forums and your willingness to help others. I wish you happiness now and in the future.

My husband Eric has been diag. with GB. Can you give me any information about the disease and what happens?
\
Thank you,
Anthey

My 78 yr old has had GBS since 2/12/2006. I have been at her side everyday since the beginning. She is in a rehab now and getting movement back alittle everyday. Rehab is so depressing for her because her mind is so with it and the other patients there are old and in bad shape. I visit her everyday and I know she will never be able to live alone again. The plan is for my wonderful husband and I to sell our home and move in her house, my childhood home, to take care of her. I don’t know if she will need 24/7 care but am willing to do that if needed. This has been an awful thing for her. She was sooo independant before the GBS and now she has to rely on everyone else to do for her.
You are a great example to me and I thank all of you for the information I get from this site. We have an appointment with the Neuro next week for the first time since out of ICU and I am wondering if you could give me any information on what I should ask the Dr. I will add the suggestions to my list.
Thanks.
Devoted Daughter Donna

Under Main Discussions I posted my dad’s story my mom is talking about under “My Dad My Hero has GBS”, not knowing my mom posted here. I just found by viewing other discussions my mom had posted here. Thank you all for helping us through this.

Mumbles 143
Courtney

P.S. Mumbles 143 is my dad’s nickname because as a child no one understood what he was saying so they called him mumbles.

My mother took care of my grandmother (her mother) until she passed 3 years ago of congestive heart failure, my grandfather has alzehiemer’s and has been bed ridden (my fathers father) for 3 years right after my grandmother passed he became bed ridden. My mother has been married to my father for 46 years and she is 100% a caregiver. She can nuture anything to grow, prosper, and make stronger. She holds us all together. Stay strong mom…As the site has told us GBS stands for “Getting Better Slowly.” Keep your faith strong and we will make it and our big papa bear will come home.

[quote=Brandy]Hi to anyone that might need a caregivers point of view. I was my husband Frank’s primary caregiver for 6 years and he passed away on Christmas Day from an unrelated illness not from GBS/CIDP.

I have been a member of this Foundation since July 21, 2001.

If I can help you in any way, I will certainly do my best to help. 🙂

So ask away.:)[/quote]\

Dear Donna,

I think that in many ways you still an active caregiver to all of us on the forum. Your compassion, help, support and adivce is such a blessing to me, and I know to so many others on the forum. Thank you for staying with us, thank you for being there for all of us. 🙂

God bless you Brandy. Your kindness is beautiful. My wife has been through this disease with me for going on ten years. She accompanied me to all the doctors visits, gave me ivig, made sure I was comfortable during the hard times. She cried when I couldnt walk and cried again when I could walk after the chemo. If i had to face this alone, I am certain that I would have given up and in long ago. I did not mean to hijack your thread, just wanted to say THANK YOU and God Bless you. You helping everyone you can after all youve been through. You are one in a million 🙂

John

Hi everyone! Brandy I believe you had said once that your husband had diabetes, or maybe it was someone else. My husband Keith has CIDP, uncontrolled diabetes, acid reflux, hital hernia, high blood pressure, some is going on with his kidneys but we don’t know what it is right now. But my question is what in the world could possible else he can get. He is 39 yrs old and stays in severe pain. We have 3 children and our 2nd boy has a heart condition which resulted in 3 open heart surgeries. Can any one give me any idea or has anyone went through all this with their CIDP?

Hi, I’m Norb’s wife and caregiver. He has been passing on a lot of wonderful information from this group. Usually, I have little time to get onto the computer but lately the stress has worn me down a bit. That’s probably because I’m also 3/4 nanny, cook, shopper, and housekeeper for my daughter & her husband. We live with them 3-5 days a week. By the time we get back to our house, I don’t feel like doing much but there is a lawn to mow, a garden to weed, cooking, shopping, and our own laundry and cleaning to do.

I keep taking on jobs that Norb used to do. Last week I tried to change out the air conditioner filter and ended up shutting down the whole thing. It has been really hot here and when I thought it wasn’t going to come back on poor Norb thought I’d gone a little wacko.

Since, our wonderful new drug plan took effect, Norb’s drug bills have gone through the roof. We are still holding our breath about whether his secondary insurance is going to pick up the rest of his IVIG costs. I keep thinking I really need to go back to work but can’t imagine how. I finally decided to give myself a break and hired a 16 year old neighbor girl to mow the lawn. Last summer, Norb insisted we buy an electric mower – not self-propelled – because he knew he couldn’t start a gas powered one anymore, so I’ve been pushing that thing up and down our hill.

As difficult as things seem to be some days, it has really helped me a lot that we worked with Burmese refugees for two years. When I start to think I’m suffering, I have to laugh at myself and to recall their wonderful positive attitudes despite experiences of real torture. It’s all about perspective, isn’t .

My father died of lung (& bone) cancer in 2000. Norb and I moved there to help my mother. At the time, I really didn’t quite get it that she had become so exhausted and overwhelmed. It was so easy for me to “advise” her just to take better care of herself.

The word for the day is “perspective!”

Carol

Dear Carol,

Norb often speaks of you in his postings, I am so glad you have posted on the forum and given us all the opportunity to meet you. You have a hard, emotional and often thankless job being a caregiver. I will keep you in my thoughts and prayers.

Nice to meet you Carol… One thing I would like to stress to any caregiver is the guilt a patient feels for getting sick in the first place. The first few years I wished I could just diappear off the face of the earth. How totally useless I felt, unable to do anything for myself. How guilty I felt when my husband had to run 4 1/2 hours each way to Mayo every weekend for 3 months. When I finally got home, my 78 year old mother had to move in to take care of me so he could work. What an awful time that was.

He had to do all of the gorcery shopping, cooking cleaning, running errands, dealing with the medical bills & all of the other bills, etc. But after 26 months I started to come around somehat, & was able to take care of much more again. Last August his back went out & he needed 2 back surgeries. He was out of commission from August 16th until March of this this. I became his primary caregiver. It felt so good to be so needed & to be able to wait on him. Now my mother might need knee replacements & I would be her primary caregiver. So one never knows what life has in store for us.

If you can afford it, get someone to do the lawn all of the time & get a housekeeper. You might have to tell your daughter that doing all you do for her is too much? Take car of yourself, that is all I can stress…
Pam

Greetings,
My wife is the reason I’m alive 2.. God Bless the Caregivers, for Wat they go thru..

[B]I’ll tell you a little about my situation, everything started out in February 2000 for my wife.

Well, at first she started getting sick at her stomach, accompanined by vomitting. This went on for quite awhile, she went to a hospital in Shelbyville Ky, she was in there a total of 4 times. Every time the Drs came back with a different diagnosis, they went from urinary tract infections to one thing after another. One of the Drs said it was all caused by stress, well they even did an ultra sound. Which I don’t think they knew how to read the results, anyway.

The sickness only got worse, finally in May my wifes mother had her taken by ambulance to a hospital in Louisville Ky. 45 minutes after she had been there as to which they ran an ultra sound, they came back with a diagnosis of a diseased gall bladder, It was 3 to 4 time larger than it should have been, she had surgery the next day for the removal of the gall bladder.

I thought that would be the end of her problems, Not quite. She started having trouble with tingling & other things. A neurologist that was in the US from Russia was called in to examine her, she suspected GBS by what my wife was describing to her. They did a lot of tests & they confirmed that the Dr was correct, the next morning her respiratory system was shut down, & she died the Drs someway or another brought her back. She went through plasma pherisis 5 times they also did IVIG. She was completely paralyzed at first, she stayed in the hospital for 3 mnths, & was taken to a nearby rehabilitation center.

After 1 mnth they got her where she could walk using a walker, she had to learn how to do everything all over again. The GBS hit her extremely hard, she also had a form of CIDP that the Drs claimed was so advanced they couldn’t even classify it. But anyway she has had one hospital stay after another since 2000.

In 2004 she had to have 2 large stones removed from her bladder, & a mnth later she got a colitis infection that was so bad it destroyed her colin. No meds would stop it, so she had surgery for the removal of her colin. The Dr said it was one of the worst cases he had ever seen he removed 95% her colin. He said at first he didfn’t think she was going to make it to the fact he only gave her a 5% chance of living. But she beat the odds & she fought it & made it, she was in ICU for 3 mnths due to problems. One of them was they couldn’t keep her temp down, so she was placed on a cooling pad with lines that went to a cooling unit. This was the only way they could keep her temp down, but she finally made it back to a normal temp mode.

She finally got out of the hospital again, I forgot to say she has an illiostomy & has to wear an ostomy pouch on her lower right abdomen, as to which she is unable to change it because she has limited use of her hands still. So I take care of changing the ostomy pouch, she also has a GTube in her stomach as to which this is the way she takes her meds. They are all crushed & dissolved in water & put in through the tube, thats another thing I take care of. She is currently on generic Neurontin 800 mg 3 xday, for nerve pain as well as Hydrocodone 7.5 500 mg for pain.

Another thing the GBS did was it almost completely destroyed her nervous system, she had constant nightmares & they got to the point I thought she might eventually wind up in an institution. Her psychiatrist put her on Seroquel 300 mg 2 xday, within a mnth the bad dreams went away & she got where she wasn’t afraid to go to sleep. One thing that kept occurring she kept seeing hands trying to grab hold of her & pull her through the bed, but that went away finally. So now we’re just getting on with things she still has the bad nerve pain & the tingling still prevalent but the generic neurontin seems to help keep it under control. I hope what I’ve shared with you gives you a little insight as to why I came here. Just wanted to share this as I have been a careprovider since June 2000.[ /B] 😉

God bless all caregivers! The love and total commitment to me, from my hero~husband, saved my life. He never waivered when everyone left us to ourselves. We were married just 2 short months when the GBS hit, 11 1/2 years ago. Two little words ~ thank you ~ are “not big enough” for all the Brandys, Carols, Richards . . . I love you all 🙂

when your alumb coming out?

You have a new album coming out Donna??? 😎

Just read your post Dustdemon. What a terrible ordeal for you and for your wife. What a wonderful husband you are to stand by her and help to get her thorough these things. May God bless you both.

Hi Duchess,

Away a long time and devasted to hear about Frank, how are you?

Well hello Duchess,

Thank you so much for the welcome and Joanne is sitting beside me on her PC playing cards, she is still doing very well, here she is!
Hi Brandy, sorry to hear about you husband. I am sooooo much better than the last time we were in touch.
It is going to be a very expensive time for you but look on the bright side, you will gain two daughters.
\our youngest son is also planning to get married for the second time. I will be quite happy for this to happen.
Speak to you again soon.
\joanne.
Me again, I lost all my information when lightning took out my old PC, right after that my old firm asked me to come back to work so I got totally involved and have only recently bought a new PC and am back on the www. Not sure if I am allowed to post it here but here goes anyway, new addy has one more digit [email]wrf1@telkomsa.net[/email] mail me, need to catch up with you.

Love Roy