Fibro Challenges Online Support Group

My grandfather had alzheimers. It was after my mom had passed. It was always a given that my mom would take care of her parents. Both her brothers live far away. My father stepped in when everyone told him he didn't have to. But he believed he did. So he moved in with my grandparents. Our biggest concerns were he would fall again and hit his head. He was very tall and large man(not fat). He lived with them for months. Before we finely talked him into going. He went to a great place. And they had an alzheimer floor the staff was awesome. When he died there they called us. And in a blizzard we drove up to a short ceremony with his body before the coroner took him.

My mother died of good pastures syndrome. We basically watched her die in the hospital for 40 days. Fibromyalgia and all I was there everyday. Toward we were hopeful because they kept talking about moving her to another facility. She never was stable to move. We knew it. But I guess they had to keep our spirits up. I carted my 5 yr old everyday. He and grandma were very close. They wouldn't even let my son see him until that night. The first night they thought she was going to die. My son was the only one she would smile at or laugh. They kept her so doped up she didn't recognize most people. I don't know how many people believe that some people hold on for others. But I believe my mom was holding on for me. We were best friends. She was even mom to my husband who had a rather bad childhood. He said my mom was more of a mom than his ever was. He just wanted to know why did he only get 8 yrs with the best mother. After she had punctured the same lung again and thay had to revive her. I whispered in her ear that she didn't have to keep on holding on for me. And that was the night we got the call to say good-bye. My brother still asks why did she have to go without seeing his firstborn. They even had their delivery moved to the same hospital. Of course they told a nurse and they took a poloroid of the baby. And they showed it to her and taped it to the wall. And my brother brought lots of enlarged pictures to show her. He came in one night to stay with her & she motioned where is the baby? So he showed her his laptop. She frowned because it wasn't a new picture. And because she was in ICU they wouldn't let them go in with the baby. I know iw still bothers him. It bothers me that she missed out on one more from me. My brother has a total of 3. Grandma missed out on a girl. I still dream of one from me. But physically a lot would have to happen.

chickiepoo

Wow, we all seem to have this common thread of having to watch loved ones go downhill a little bit at a time, without hope of easing their pain or lessen their suffering. It's so hard to be a caregiver in this circumstance. It's stressful, mentally wrenching, exhausting, and often takes a toll on us physically as well.

I was one of my mom's caregivers when she was dying of ALS over the course of 5 years. The last two she was bed-ridden and totally paralyzed from the neck down - then lost her speech and swallowing ability. It was an agonizing, cruel disease, and it took a lot out of me. Chickiepoo, my mom was my best friend too...and I was the only child at home who could help care for her. My dad mostly drank away his grief at having to watch her decline and suffer so miserably, but the burden of his alcoholism on top of her suffering this dread disease caused me to have a nervous breakdown at the age of 19. She finally passed at the age of 46, when I was only 22.

It was the most wrenching thing I've ever been through in my life.

This is one of the cruelest diseases known to man, because the patient can think as clearly and rationally as ever and knows everything that is going on around them, as well as what their future is, losing function a little bit more at a time each new day they wake up...and an unpleasant death when they are totally paralyzed...not too much to look forward too.

I am sometimes even now ashamed at how I complain about my fibro symptoms when I am hurting. I am just a bit limited on some days, other days a bit more limited, but I can still do so many things that those with ALS cannot! And though my symptoms might be a bit worse each year, they are not terminal, and I will not lose my speech, swallowing, eating and breathing ability from fibromyalgia!

Also took care of my ex after several back surgeries, and I worked as a home health aide for a couple of years. Most recently, my dad fell and broke his hip, was in nursing home, and came home after a month. I have been dressing his pressure wound for three months now, but he is nearly recovered from the hip replacement. He is almost 77 and diabetic and has to be looked after. Always a worry that low blood sugar will make him pass out or do something harmful because of it, and his increasing forgetfulness. He does not want to be looked after or admit that he is declining, so he becomes cranky and nasty and mean at times. Not an easy thing to deal with...

All of this recent caregiving has been extremely stressful and my fibro has flared since his fall in January. I am in a survival mode and a holding pattern, just trying to cover all the bases between my dad and my two boys, one of whom is suffering from extreme emotional problems, which so far are being diagnosed as anxiety, depression, possible bi-polar, and PTSD. He goes into rages and before he got on meds was talking daily about suicide.

This is a kind of caregiving I had not experience with...except my own depressions in the past. I never had this kind of rage though, and it has been hard on myself and his little brother. They both missed a lot of school, and now I am forced to home school the youngest and am looking at a new school tomorrow for my oldest one, the boy with mental health problems. This is after fighting the public school system and a truancy charge and court hearing...finally the school has agreed that it will help out financially with a school that is more accomodating for his mental health issues, behavior issues, and academic probs. I am praying that this school will be the answer we've been seeking. He is too oppositional and defiant to home school...and with fibro I simply lack the physical stamina and patience. lol. It's been a tough year so far...and the fibro keeps pace! Caregiving cannot help but be physically and mentally demanding and stressful. We need to always be aware of that and the toll that it may be taking on our health as well...and try to have respite care and take breaks when we can.

thanks for sharing your stories...I feel much less alone now.

Post edited by: hipmama42, at: 04/29/2009 02:32 AM

Post edited by: hipmama42, at: 04/29/2009 02:37 AM

himpmama it is us that should thank you for sharing your story. One thing I am glad you pointed out in your story is the importance of respite care and getting a break. So many people think they have to do it all or simply will not ask for help. And even though it may be hard to find that help it is imparative that we do so for our own health and for the one we are caring for, because only if we take care of ourselves can we continue to take care of someone else, or at least to the best of our abilities.

Your story is an encouragement to take one day at a time. We can do it.

I too am ashamed sometimes at my grumbling, when like you, I can do so much compared to others. Not to say that Fibro is not painful and debilatating, but to be thankful that we can still do so much.

I know I for one, have learned coping skills and have built up somewhat of a tolerance to the every day pain. And with that and learning to pace myself, I know have more good days than bad.

One day at a time.

Thank you again for sharing hipmama! And I hope this school is everything you are looking for. Good luck in homescooling. I tried it and it just didn't work for me. I have one that is ADHD and the other is strongwilled and they fight constantly. I couldn't do it But you may love it!

I am really thankful for all of your responses and as painful as it is, I am glad I asked the question. Emotional pain is also a trigger for fibro. You can't get to much more emotional pain in the end when you are a caregiver. My dad died last June from Alzheimer's. He was almost 58. I am sure that did not help my symptoms.

i too feel guilty for complaining about my pain when I know people are going through worse. My therapist told me that no one can compare ones pain to another. There is no rating system in the sense that, when you feel pain, you feel it. It is just as horrible to you as anyone else. That is why it is so important not to only take care of ourselves physically, but emotionally ad well.

Thank you all again for sharing your stories. I thinkit really helped. I know it did help me.

Gentle Hugs,

Jenn

Sharing our stories is what it is all about. Being able to express emotions without the fear of judgement is probably the best emotional medicine there is. Thank you for sharing yours and listening to ours. We love you.

I also have been a care giver - early in my life worked in Nursing home and later a hospital as CNA before going to college. I spent 10 years taking care of my Mom and Dad trying to keep them in their home. Mom was full care and Dad needed some assistance. 2 years ago they went into a nursing home because I couldn't do the lifting and 24/7 anymore. Mom passed on early this year.

So I guess I get to join the club? LOL - Maggie

I am also a caregiver to my family. My Mom has COPD, Autoimmune Hepatitis and Myelodysplasia. Every couple of months we go to her oncologist to find out if her platelet levels are holding steady or if they're dropping. If they drop to 20,000 then she will be in the leukemia zone. For now, she is maintaining at 66,000 down from 107,000 2 months ago.

She also suffers from chronic fatigue, anxiety, but fortunately she has little to no pain.

My brother was in a motorcycle accident in 1995, sustained brain injuries, and chronic pain. His right arm had to be amputated because gangrene set in. He is the most difficult to deal with because he has lost his "reasoning power" and forgets things more than he can remember. He is ambulatory, (thank God) drives himself to and from appts, but he cannot remember if he has already had his meds, or even if he has eaten. He is unable to live alone because at times, he cannot take care of himself.

Last year, the pain and fibro fog was so bad it was a workout just to get out of bed.

When the diagnosis of Fibro, Sjogren's, hypoglycemia and Raynauds came down, it was devastating because now the caregiver to the family also needed to be cared for.

Luckily, my Dad is still relatively healthy and helps out too.

So far, my story has a happy ending. As a family, we all believe what one person cannot do, there is someone else in the family who can... Teamwork!

I wish you all many blessings,

Sonni

Wanted to send some hugs to all you caregivers. I've been there too, and I know how hard it is. It's so hard to watch the ones we love suffer. I think that stress alone is enough to flare the Fibro.

You all will be in my thoughts and prayers.

~Tammy~

Thoughts and Prayers to you too Tammy!

That was a great question for everyone, again I didn't feel so alone dealing with care giving and Fibro...

Thank you everyone and anyone else who posts after this. What I have learned is that I want to make sure that everyone new to caregiving roles take care of themselves. As hard as it is, and I know I used to say "I can take care of me later, ______ needs me now". You have to find a balance or your own health is at risk.

Peace, Hugs and Love,

Jenn