Topic : When a Family Member Gets Sick

Okay, to put this "out there" for the world to see is my only way to get my frustration out.    

My mom and dad's best friend since high school has ALS (Lou Gehrig's Disease).  This disease is a horrible slow death.  There are few things that can be done to make her comfortable.  I hate that someone as active as her has met her fate like this.  I do not think she has very long left, but I pray for peace in her life desperately.    

Her daughter is 27 or 28, married with a small son.  Her only care is to get her mother sent to a nursing home so she can "have her family".  She yells, cusses and will, on occasion, hit her mother.  She blames her mother for the problems she is having in her marriage.  She only cares to be with her in-laws and her husband.  I understand (to a degree) the distancing herself, but the anger is too much.    

All her daughter has ever known is her mom.  Her dad was a deadbeat and never was there.  Her mom gave her everything- ballet, cars, softball-in high school the daughter had a vehicle accident due to riding with a drunk driver.  Her hips were broken badly and she was roughed up.  I watched a mother go through so much pain and guilt.  The daughter received a chunk of money and blew through it like it was nothing and blamed her mom.  She has always been a spoiled brat to say the least.  But the blatant disrespect for her mother is horrible.  

I just want all the resentment to be cleared up, so when her mother dies, she doesn't have all those shoulda woulda couldas.  I want her son to know her mother and know how good of a person she was and is right now.  I am just looking to the future and I can see so many regrets happening and I really want them to get some help-before its too late.  

any suggestions....???   

Hi,  

I just read your message today so I'm hoping that you check back.  Please note:  I am not a medical professional.  I used to work in healthcare as a Director of Food & Nutrition Services.  We saw several cases of MRSA (Methacillion Resistant Staphlococcus Aureus...forgive spelling) in our nursing homes.  It can make a person pretty sick but I don't remember anybody dying from it.  I think that their immune system would already have to be pretty compromised to get that sick.  It is pretty contagious so please take precaution using disposable gloves, thorough hand washing, etc especially if you have any open wounds.  I don't remember what antibiotics (I think IV vancomyacin) were used to combat the MRSA but it is possible.  It is a staph infection that is resistant to many antibiotics but I do remember that some worked well. 

Cellulitis is not the same as MRSA but can be caused by a staph or strep infection....or maybe it's vice-versa.  Definately inquire of your physician if your husband's infection could be MRSA and what precautions your family needs to take. 

Again, please remember that I am NOT a healthcare professional and am going by memory.  My mother picked up a staph infection this year while in the hospital but it was not MRSA.  She was on IV antibiotics for 6 weeks.  Thankfully, they gave her a pic line so she could do them at home. 

Best Wishes. 

Jerri 

The daughter is obviously very frustrated.  Putting her mom in a nursing home might be the best thing that she could do FOR her, please note that she wouldn't be doing this TO her.  

It can be pretty difficult to watch a parent suffer like this and feel powerless to do anything about it.  This may be where her anger stems from and she doesn't know what to do with it so she puts it on her mother, the one person who won't reject her no matter what.  I think that the daughter is scared because she knows that the end may be near and she's resenting her mother for putting her through this.  It may not seem justifyable to us but each person grieves in their own way.  

I think what would be best is for her to get into a care-giver support group or get therapy, or optimately both.  

As far as what you can do, I can only suggest to love her where she's at and show her empathy.  Try to see things as she sees them, not how we hope that she would.  Maybe suggest the counseling to her.  Maybe if she feels the love and empathy, she may start to feel better about herself and soften up on her mom.  

I am so glad that you are spending Thursdays with your Dad.  My Dad passed away 5 years ago and I miss him terribly.  He died 7 years after 8 by-pass surgery and  7 years of life after that to be taken so quickly.  I know in my heart that he would have been a horrible long term patient so am glad it was quick though.  There were so many things I wanted to tell him but never found the time to tell him.  Whether he remembers or not ,tell your father  your feelings so that you are not left with---"I wish I'd told him that.  I am unsure whether Dad knew how much I loved him.  I told him the day of his surgery but he was pretty out of it.  As I wrote that I remembered telling him I loved him at the end of phone conversations so hopefully he remembered. 

My grandmother had Parkinsons Disease and Alzheimers.  With her being widowed at 62 and passing 30 years later herself she became SOOOOOOOO difficult to be around.  She was unhappy for so long that no amount of visits or phone calls was ever enough.  She'd driven everyone away. After my visits with her I had felt better but she'd call my mom right away and complain about me and my children. I did not deal with it well but my mom was ALWAYS a great support in this.  Grandma would drive to the grocery store and forget how to get home.  She would not remember that mom and I lived close by and just cry.  On a couple of occassions the police from this small town got her home.  Grandma would then lock herself in the house for days afterward.  I know she was afraid ALOT of the time.  After Dad died and I moved 1hour away Mom couldn't do it anymore.  She called her older sister for help and in that 30 years my aunt finally came to help.  She took Grandma to Texas and she ended up in a hursing home after surgery.  Six months later- Grandma had passed away. This brought about alot of hard feelings between my mother and her siblings which is another story. 

I wish my Grandmaother would have created some memories with my children.  Your children are getting to know Grandpa, spending their day together and listening to his voice.  They can also feel the love between the two of you. WHAT A GREAT LEGACY!!!!!!!!!! 

My mom had surgery in January and picked up a staph infection and still has problems with it...going for related surgery #4.  She is no where near what your husband is going through though. 

Is your husband collecting social security disabilty benefits?  He's been out of work for way longer than the 6 months they require.  From what I understand, they almost always turn everybody down the first time so they just need to re-apply and they get accepted.  I don't think that it matters what the family income is to be able to collect benefits.  I know that it's not a huge amount but every nickel helps.   

Please find a care-giver support group in your area for you and your kids.  It sounds like you could use a place to vent your frustrations and fears with people who understand.  And, they may be able to direct you to agencies that can help you. 

Hi, I read your message about being diagnosed with MD. I have had Muscular Dystrophy my whole life, I was diagnosed as a baby with Conginital Muscular Dystrophy, I think I was about 6 months old (my family had to travel from Florida to New York for diagnosis.) I turned 19 years old this May. All we really know about my form of MD is that it is non-progressive. I haven't been able to walk since I was about two years old, and that was with leg braces and a tiny walker. I used a manual wheelchair when I was younger, but my arm strength deteriorated and I got my first electric wheelchair at age six. I currently use an electric wheelchair that I got about two years ago. I graduated with honors from high school in 2005 and started at Florida State University. Last summer, however, I became very ill with pneumonia and had to be put on a respirator, once they removed the respirator and I could breathe on my own my swallowing was so weak that I couldn't eat, and I had to have surgeory for a feeding tube to be put in. Once I had been put under the anesthesia, they were unable to intibate me to keep my airway safe during the operation, so they had to do an emergency tracheostomy. I nearly died. One of the drs. even told my mom to prepare the family for the worst. Afterwords, when I had begun to recover the Drs. insisted that I needed the trach, and I had it for 8 months. It was an endless hell, I was unable to talk and I had to be suctioned several times an hour. Worse than that, I couldn't go back to college, and, I've always loved school, so that really hurt. Fortunately, this summer I was able to do a couple of online classes through the community college as a transient student. Finally, after months of intense swallow therapy, I was able to speak by covering the trach with my finger, but, it was still difficult. Then, finally, after intense negotiation with my drs. I was able to remove the trach for good! Since then I've been doing great (with the exception of a broken leg last month when I fell out of my hoyer lift) and am planning on going back to school in the fall. I don't mean to ramble on and on, I just wanted to share my story with you and let you know that while our types of MD may vary, I know some of what you are going through, especially with the pain issues (I have a lot of chronic pain in my legs and back) and that we probably have a lot in common. If you would like to talk to me you can email me at caitlin.inman@gmail.com. 

Good luck and keep your chin up!  

I have an 11 year old daughter and this is our story. Our last school year was horrible! My daughter and I were bullied by teachers, administration, and the superintendent.  

Nicole was always an active child. She was on the swim club and did competitive swimming for 3 years. She is very social, caring, smiling all the time and likes to be on the go. One night in April 2005, Nicole was at a family fun night for the swim club when a child pushed a teen age child off the edge of the pool deck. The boy didn’t see that Nicole was swimming in that area and the child he pushed fell on Nicole’s back. Nicole was in excruciating pain when she got out of the pool. The coaches looked at her back, but didn’t feel that there was any problem. I contacted the pediatrician and was told if the pain didn’t subside by morning, to bring her into his office. We went to the pediatrician and he felt her back was just bruised. Nothing showed on the X-rays. After a few months, Nicole was still complaining about her back, so they had her start physical therapy. Nicole went 2 to 3 times a week, but she was still experiencing pain. The physical therapy was not helping. The end of July, I was told to take her to the orthopedic doctor to see if he could find anything.  The orthopedic doctor had her go for an MRI, but again was told nothing showed on the MRI. He felt the trauma of the injury still just needed to heal more.  

Nicole tried to take tennis lessons that summer, but would get flushed easily, and her back would hurt so badly when she ran to hit the ball. The lessons were an hour long, but Nicole could only take a half hour practice, if even that long.  

Nicole was excited about going back to school, she was now going into the 6th grade and it was her first year at the middle school.   

Nicole’s back never stopped hurting since the accident, and in November things started to change and get worse. Nicole had missed 5 days the 1st nine weeks of school and in the 2nd nine weeks, Nicole started coming home from school so fatigued, feeling sick to her stomach, and would have a severe headache. Nicole would call me to let me know she was home from school, and would tell me that she was exhausted and needed to lie down for a nap. When I would come home from work and try to wake her for dinner, she would be in such a deep sleep. Nicole would either not hear me or would respond that she was too tired to eat dinner. Some nights she would get up 4 or 5 hours later to get something to eat, and then go right back to sleep. Nicole started to sleep 17 hours or more a day! When it was time to get up for school, Nicole would call me and tell me how sick she felt. You could hear in her voice the pain that she was feeling. I would e-mail teacher’s for her school work, trying to keep her current on her work. After a few weeks of this, I had 2 teacher’s start being unprofessional (the best way to put it nicely) with Nicole and I. Nicole’s math teacher would meet with her at lunch time to help her get caught up with her work. While they would meet, the teacher would make comments to Nicole about her inability to come to school and how other children could come to school sick. She told Nicole at least two times that I kept Nicole home for every little sniffle! The science teacher started complaining in his e-mails to me, stating he had no sympathy for Nicole missing school and for not being able to get caught up with her work because it was an ongoing issue. He even broke down the percentage of how much school Nicole had missed. I had explained to the teacher’s previously about Nicole having a history of missing school due to illness. Her allergies would kick up in November and she would end up getting any illness that was going around at the time.  

I started to keep a journal in December of the events we were experiencing with the teacher’s and administrators. On December 14th, I thought we had made a break through with the teacher’s. Nicole’s math teacher contacted me and we spoke for quite awhile on the nasty e-mails that were flying back and forth. We seemed to finally be on the same wave length of communication, but I was wrong! Nicole was still missing school and sleeping for hours, still complaining of severe headaches and always feeling sick to her stomach. I went and picked up an extra set of books from the school, so that when Nicole missed school, I could just get the assignments via e-mail. Nicole had been off from school and when she went back to school, she had work not completed because we were not given the book. The teacher pulled her out of class and told her how she loses everything and made the comment “Maybe you should clean your house!” Of course, I went to the school the next day because I was the one who picked up the books. I spoke to the Vice Principle regarding Nicole being harassed about missing school and about the missing book issue. We came to an agreement that attendance would no longer be an issue, since I was indeed supplying doctor’s excuses.  

 We were going to the doctor’s at least twice a week because of what Nicole was experiencing; the constant back pain, headaches, fatigue, and even sore throats. We were told it was a virus for a few weeks, then they thought she had mononucleosis again (she had mono the end of her first grade year). The test came out negative, so more blood work was done. Again, no tests showed anything wrong! We were now being sent to a Diagnostic Referral Specialist, who blamed it on Nicole’s allergies, since her allergies were so bad the day we saw the specialist. I knew that was the not the problem, but was so frustrated I let it go that day. We even tried going to a chiropractor to see if that would help. Again, no success!  

Nicole had taken an interest in fly fishing and joined the fly fishing club. She was able to attend a few times after school and was really enjoying herself. A trip was planned for February and Nicole wanted to go on the trip desperately. I told Nicole she could go, but the teacher who was in charge was one of the teacher’s that was giving Nicole a difficult time about her attendance. He waited until the last minute and told Nicole she would have to have a parent go with her, and then told her the trip was all booked and she could not go on the trip. She was heartbroken! Nicole was going half days to school to see if that would help, but she still managed to miss school. Her math teacher gave lollipops to everyone on Valentine’s Day except Nicole. Nicole had children eating them in front of her. When I approached the principle, I was told the teacher gave them out in the afternoon. How childish can a teacher be? Don’t they realize children learn from them not only in the classroom, but by their actions also!  

She started to fall behind in her work. How can you get homework done when you come home so exhausted and sleep until the next morning? I spoke to the head of Secondary Curriculum to see if we could get a tutor to help teach her the work she was missing, and was told she could stay after school for the tutoring they offered at the school, otherwise I would have to pay for a tutor. We finally worked it out that Nicole would go ½ days for 10 days to see if that would help her. Nicole still was in so much pain, that she missed 5 of the half days. I was told that she would have to go back to full days. I wrote the school board a letter, skipping over the Superintendent, since she never tried to get involved in our problem. I called some school board members after distributing the letters. The school board President and Vice President never even returned my telephone calls, 2 others were understanding and were willing to try to help get our issues resolved, one told me he had to hear what the Superintendent had to say, and another told me that this should not even be a school board issue. I did have 5 of the 9 school board members tell the Superintendent that she needed to get involved in our issues. Oh boy, the wrath of the angry Superintendent was now going to start! I had explained in my letter how Nicole’s math teacher had given lollipops to every child except mine on Valentine’s day, and how she was told she could not come back to school for fly fishing club because of her being on half days for school, which was a lie! I was told by the Superintendent and the Principle that they did not agree on what I stated, in other words, they were calling my daughter and I liars!  

The Superintendent called my home and spoke to Nicole because I was working. I never hid the fact that I worked for the school district as an extra bus driver. Nicole told the Superintendent that I was working and could not be reached, but she still called my cell phone. The telephones on the busses don’t always work, and with me driving different busses, my boss would call me on my personal cell phone. Well, the Superintendent called my cell phone and had me on speaker phone with the Assistant Superintendent. I explained that I was driving school bus, which I say to anyone even if I’m not driving while working. She played dumb and asked if I worked for her school district. I replied “yes” and explained that I was on my way back to the bus garage. We hung up and I contacted her when I got back to the garage. Of course, the Assistant Superintendent was now not available for my call.  She told me that I better never answer my personal cell phone again while I’m working, and told me that she would do nothing for me unless I had my child evaluated. My child is an honor roll student and is not a special education child; she is a special needs child! I told her that I would not allow them to do an evaluation for special education.   

I had left a note for my boss that I needed to talk to him first thing in the morning regarding the Superintendent. By the time I went to see him, he told me that she already had contacted him. She tried to get me fired! He stated that I was not getting fired because he explained to her how they contact us on our personal cell phones. I was then told that a new policy was going into effect because of me, regarding anyone who got caught talking on their personal cell phones. The policy never did go into effect and no one else was told this information!  

I had to have my child put on homebound on March 2nd because of the Superintendent not willing to work with us. We were given a stack of work to do and were given a March 9th deadline. The Science teacher told us that Nicole had projects that were late, but his e-mails never stated any due dates. I have a copy of an e-mail from the day after one project was supposed to be due, and he never says anything about it being late. He penalized Nicole for those 2 projects. She would have gotten an A on both projects, but deducted ½ point a day for what he said was late, so she received an F on both projects. Most of the work we handed in by March 9th wasn’t even counted on the grading system! My child worked so hard to get the work done by the due date, and then they didn’t even count the work as grades! How cruel could they be? Nicole wanted to be in school, because she had just started making new friends. The middle school has a Teen Center once a month that Nicole would attend. She would have children come up to her and tell her that she didn’t belong there since she wasn’t coming to school there any longer. The stress of not being able to go to school, friends shying away from her, and seeing what I was being put through by the teachers, administration, and school district made Nicole’s condition worse. One day she had slept from the night before and all day. I tried calling her in the afternoon a few times, but she never heard the telephone. At approximately 4:30, I had tried calling home again, but again she did not answer. My heart sunk and I got so upset, thinking something happened to her. When I got home, she had just awoken from the night before.  

It took 2 weeks to get a tutor, so I had to teach Nicole her work. She only received 5 hours of tutoring a week!!! The tutor quit after a week; I had praised about her to the Superintendent in an e-mail just 2 hours before she quit! It took another 2 weeks to get a replacement tutor. By the time this tutor started, Nicole had gotten worse and we had to cancel on her most of the time. We had to get the PSSA tests in before we could even start on her school work.  

In April, spoke out at an open forum at our administration building with Governor Rendell; I told him that the “No Child Left Behind Act” was broken and how the Superintendent would do nothing for me, unless I had my child evaluated. I gave him a packet of information of what we had experienced with the school district; of course, I got a letter that told me that I had to deal with the school level. Three (3) working days after speaking out in front of the Governor, I was unjustly suspended from my position as an extra school bus driver for the school district. I was told that I could not drive until I received a letter of statement saying I was fit to drive. They originally were going to make me pay for that evaluation, and then finally said they would pay. I missed 4 days of work because of this retaliation! I was told because I cried on a few occasions at the bus garage that they were concerned about me. Believe it or not, I passed the evaluation and am now the only employee of our school district that has a letter stating they are fit!! I filed complaints against the school district with the Office Of Civil Rights on my daughter’s behalf and on my behalf. I withdrew the complaints in good faith, since I had a grievance against the school district with the union and finally received the pay due me for missed work.  

 We were sent to the Rheumatologist in the middle of April and finally received a diagnosis; one year after all of Nicole’s pain started! I felt like a new person just knowing what was wrong with my daughter. Nicole was glad that someone could prove that it wasn’t just in her head! We were referred to the Children’s Institute Of Pittsburgh for Nicole to go through an intense program for 2 to possibly 3 weeks; she will actually stay at the Children’s Institute during that time. She will go through 6 hours a day, 6 days a week of intense physical (3 hours), occupational (2 hours), and swimming (1 hour). She will have to go through the pain to get out of pain! The therapy is individualized and they were only taking 3 children at a time, but started in June taking 4 children at a time. They have a waiting list, and we are looking at a targeted date of July 24 for Nicole to start the program. When we were evaluated, we were shown a tape of a child going through the program. They pull no punches with these children on what they will have to go through to relieve their pain. The child has to decide if they can be strong enough to go through the program or not.  

I spoke to the Superintendent again and told her about us receiving a diagnosis. I explained to her that I was never out to create problems, I just wanted to help my child get the education she deserved. She told me that we would start with a clean slate.  

I went to a school board meeting to give the members a packet with information on me filing a complaint with the Office Of Civil Rights, and to inform them that I withdrew the complaint in good faith. I let them know how disappointed I was with the school board turning there backs on me being retaliated against. I included information on Nicole’s condition also to prove to them that my child was telling the truth all this time! I saw the Superintendent that evening before the meeting and she asked how my daughter was doing. I told her how she was doing worse because she was not able to get the exercise she could have gotten just walking class to class and because the lack of socialization. She immediately walked me to another room with the 2 directors of curriculum and told me that we had to get Nicole back to school immediately. She finally was willing to work with me. The next day she had the Director of Secondary Curriculum, a Vice Principle, and the Social Worker come to my home to work out Nicole coming back to school. Nicole could finally go back to school and there were only 9 days left of the school year. How sad that she wouldn’t work with me sooner!  

My daughter is on the Children’s Health Insurance Program (CHIP), and I received a call the end of May from a woman named Melanie Ericson. She works for the Highmark Caring Foundation as a Care Coordinator and told me about a caring program for children with special health care needs. They help families with the school, doctor’s and social service agencies. That telephone call was a prayer answered! Poor Melanie, I asked her where she was 5 months ago when we started going through this horror. She met Nicole the next to the last day of school. She heard how 2 teacher’s treated Nicole that day, they broke the good faith agreement I made with the school district. Nicole had been out riding her bike when Melanie first came to my home. She saw how exhausted Nicole was and how she couldn’t even get off of the couch after riding her bike for about an hour. Melanie has been a blessing to me. She helped me get a plan in place already for the next school year. She is working on having someone come to the school from the Children’s Institute to educate the school on RND and has given me information on this condition.  

I feel strongly about the need to advocate for the children experiencing this very real pain. I advocated two years ago for my nephew, who is in the Army, and was diagnosed with Reflex Sympathetic Dystrophy (RSD). It is the same condition but a different name for adults. I contacted government officials and even took it as far as the White House. That step got us the help for him and in touch with the Surgeon General.  

I am interested in starting a support group in my area, and will eventually find out what resources it would take for me to do this. There are 2 to 4 children out of every 1,000 who experience this condition. THE PAIN IS VERY REAL AND IS NOT IN THEIR HEADS! They have to experience enough stress without the schools adding to the aggravation! The teacher’s need to treat everyone professionally!

We went to see the Rheumatologist again two weeks ago. Her condition has gotten worse and now feels pain all through her body. I pray that the program at the Children’s Institute works for her. I feel helpless and depressed that I am not able to help my child. There are some days that she has trouble getting out of bed because the pain is so bad. I want the public to be aware of this condition, so that no other child or parent have to go through what we went through this past year!