I have been debating for quite some time whether I should post a thread on a site about this, but I decided to go for it. As I stated, my Mother has MS. She was diagnosed when she was pregnant with my older sister (she was 24 at the time) after having a seizure. My sister and I grew up completely normal lives. In fact, we did not even have a clue that my Mom even had MS. She never had a single symptom after her seizure. Several years down the road, things got much, much worse. I was a sophomore in high school when my sister, father, and I began to notice strange things happening with my Mom. She used to be so bubbly and always had a smile on her face-but it seemed like everything had changed overnight. She suddenly wasn't speaking well, and couldn't balance when she walked. Her vision started to go and she couldn't understand simple concepts anymore. My sister and I had no idea what to do. My Dad was more than upset, because he had never seen her act like this before. For the first time on my life, I was embarrassed to be seen with my mom. And I feel awful admitting that now, but it was true.
Within a couple months, my Mom had an appointment with a great Neurologist in the area, and he wasted no time-He had her admitted into the hospital right away. She was in the hospital for about 6 days-but she looked a million times better after day 2. It was nice to finally know why my mom had been so off-it was good to finally have an answer. Afterwards, she was on several different medications, first the shots, the Tysabri. It was just good to see her on medication that helped. I continued on and graduated from high school, and went off to the University of Florida to get my degree. Because I was so busy in college, I wasn't able to come home too often. But as I far I knew, my mom was still okay.
I graduated from UF this past April, and because of the not-so-great job market, I had to move back home until I could find a job. So I pakced up and moved back, only to come home to a mother that was looking and acting MUCH worse than I had seen her. Although her vision was fine (or so she said), her cognitive her nearly gone. She couldn't put sentences together, couldn't understand when other people were trying to speak to her, looked entirely out of it, she had no emotion on her face, and she even tried using her cell phone to change channels on the television. I was terrified and it reminded me of several years ago when she had her first relapse. As it turns out, she had gone off of the Tysabri because she wanted to start taking the pill Gilenya. Her doctor said it would take about 6 months to get the Tysabri out of her system so that she could begin the pill. She stopped the infusion in January-And by this time it was June. She had another appointment for the nuero at the end of the month, but she was getting worse by the day. Unfortunately, the doctor had no other appointments open. She could no longer drive and my Dad and I had a hard time understanding how this could be moving so fast. Every time we tried to ask my mom about how she was feeling, she would snap on us and freak out. I stayed calm and tied to help her with concepts and sentences, but it aways backfired because she would get so angry with me. I was hurt-I was only trying to help. My father wasn't quite as sweet as I was, so he probably got the brunt of her angry. My dad did tell me not to take it personally, but that is easier said than done.
My sister is a nurse in North Florida (conveniently, for the Nuero ICU), so I immediately called her and asked her what we should do. And after a couple of phone calls between my sister and my mother's doctor-She quickly landed back into the ER. (And.. This all happened on my 22nd birthday. Not fun timing.) They scheduled her for an MRI that evening, and sure enough, she had more lesions on her brain than anyone could have imagined. So she stayed another week in the hospital on some pretty strong steroids.
Now this brings me to present day.. My Mom has been on the Gilenya for two weeks. And 0 improvement. She still has no strength whatsoever, she can't think straight, she gets upset way too easily, and her balance is way off. And even now, it is almost as if she doesn't have a social filter anymore. She doesn't understand jokes and does things that are so inappropriate for public. I try to help her-And yet I am the only getting in trouble. Again. (Yes, she still treats me like I am 12, not 22.) I am patient with her, but I can't say the same for my Dad. Although we both get frustrated, we try to remain as helpful possible.
I feel bad.. Every day I am the one up first and doing ALL the work around the house. I clean, I cook, I mop, I vacuum, I take out the trash, I take care of the dog, I make the grocery list, I clean the cars, I do a lot of the yard work, etc. I know my parents need me to help, because my Dad can't do it alone and my mom can't do anything. But I need my own life. I am 22, and I have a great degree from a wonderful university. However, I haven't had chance to apply for jobs when I am constantly taking care of the house and my mom. I feel like my life is on hold and I am frustrated. I need to work and make money, because my parents certainly aren't going to give me an allowance. At the same time, I feel bad for her and my father. She didn't ask to have MS. It's awful. I literally cry myself to sleep every night. It has taken away my mom and took a wife from my dad. It is tough. And I am asking for help. I know there is no cure for MS, but I am trying to get her to stay positive and smile throughout this process. If anyone has any advice, I would appreciate it. And I also applaud you for reading through this entire post, I know it is rather lengthy. Again.. I need help. I don't know what to do. Thanks!
Hi and Wow. Im so sorry to hear all of what you are dealing with....and its alot.
First of all, the fact that your mom lived her life for so long without it affecting her, or you seeing the "MS' is probably why this is all happening now. She should have been on drugs to stop the progression back then, or shortly thereafter. They dont wait anymore, they start the drugs like Interferons and Tysabri at the first sign of trouble now...but thats hindsight. It appears your mom has a very progressive case of MS and its really sad to hear what you are going thru. There are very few people who progress the way you descibe. I have several people in my support group who have had MS for more than 25 years and although some have some mobility problems, using motorized chairs and canes, they have their cognitive abilities. IT sounds like your mom does not....has dementia been looked at? I work with Dementia patients, and what you are describing sounds so much like what I see every day. I just wondered if early onset Altheizmers or Dementia has been ruled out completely....the progression of the MS is so extreme.
So, lets talk about you. First of all, congrats on graduating. Im also a fulltime student, who works fulltime, so I know what an accomplishment it is! Secondly, you are not a trained care giver. Your mom needs someone who is trained to help her with daily tasks. She may qualify for Medicare and Medicaid benefits, and although this sounds much worse than it is, she may even qualifiy for Hospice benefits, which would help pay for a caregiver a few hours a day to take care of her. Hopsice is my specialty. Hospice isnt just for "end of life" anymore..the laws have changed. She may qualify. You would have to talk to her Neuro about it...
Meanwhile, you cannot put your life on hold. At only 22, you have an entire life ahead of you and sounds like opportunity to go out there and grab it. What you are dealing with is a combination of guilt at not wanting to leave you mom or youd dad, without help...and frustration because you know you need to do something.
Contact the local MS society in your area. Explain to them what is going on. They have volunteers and tons of organizations to put you in touch with who might be able to volunteer time and even equiptment to help make your moms life easier....they also will direct you to support groups. There is a care giver support group here at Healthboards which you might also check out, just to talk to others who are dealing with what you are dealing with...but going to one in person, might be great for both you and your father. Meeting people and hearing that you are not alone, can do wonders....it can also open up doors to finding help.
Im not sure what you majored in, but you might take this time to explore jobs which not only fit your education, but relate to your situation. Are there any caregiver groups out there, or home health care worker agencies who might be able to utilize your talents? How about working with a non profit agency learning how to better understand the disabled? These are just random thoghts...but you absolutely cannot sit home and watch your mother get worse. You have to be out there and feeling good about yourself.
I totally relate. I work in Hospice 50+ hours a week and am doing my PHD in health sciences. Last week, my father was diagnosed with stage 4 cancer. Do you really think I have it in me to do something so personal as take care of my dad? ITs so much easier for my other 200 patients who I dont have blood ties to...I get it, its hard. But, its not impossible. Im finding someone else to take care of my dad so I can be his daughter and not his caretaker.
Does this help at all? I want you to know that your story is heart breaking and I will send you prayers of strength.....but the answers are for you to accept that you cannot change the outcome or do it all....and to help you find help to help your mother.
Let us know what else we can do.
Yes your plate is full and you need to make sure to keep yourself healthy. Care giver burnout is an emotional crisis and you want to make sure you do not experience it.
As your mom is in the position she is, pull up the forms from the Social Security Administration for disability filing. This is something you will need to get to the doctors ASAP. Once the forms are complete, visit your local SSA office to file. Depending on your mom's age, she might have to wait up to 2 years for Medicare.
While this is going on, see about a power chair for your mom. The meds may not work or they may take sometime. I have experienced the MS seizures and they are no picnic. I can empathize with your mom's experience.
That said, look at the little things, like the power chair, which will mobilize your mom and give her a measure of independence. It will also lessen your burden. You will get your mom back, but patience and time are essential.
You might also see about adult daycare. One or two days a week should help both you and your father. Stay strong, I will keep you in my prayers.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Hi! My mom too has MS, and has been diagnosed for 11 years now. I completely feel your sense of helplessness and need for answers. I am 30 years old now and was just out of high school when she was diagnosed. Her symptoms back then were minor...especially in comparison to her condition now...She has always been a very independent and creative woman. She has also been my best friend my whole life, and it seems as thought things have changed these days, drastically.
She started out on copaxone as soon as the doctors saw lesions on her brain. They seemed to act on everything pretty quickly and I think once they started her on the shots, she and my dad didn't think that they needed to do much else for this illness. Being older now and looking back on things, like her neuro that she started out, she recevied very poor treatment for this illness in the beginning. I started going with her to her doctors appointments when she could no longer walk...that was back in 2005...I rolled her into her doctors office and his jaw hit the floor! He was asking her why she was in a wheelchair, and she said I came to ask you that! Well, ever since then our family has gone through a roller coaster of emotions...especially my dad and I. I was so lost at one point, not knowing what we are supposed to do for her because she couldn't take care of herself anymore. It took my dad and I both to give her showers...and things like that made her depressed, which made things even harder to deal with. She had a baclofen pump put in at one point...when she had the pump put in, it was like she didn't have MS anymore, her legs weren't contracted anymore and she was receiving physical therapy in hopes to walk again. We were all so hopeful, but then she developed MRSA, the pump had to be removed and we were back to square one-leg pains and contracted all over again. My dad and I have spent the last 6 years taking care of my mom...having to leave work when she has fallen, or leaving work when she simply hasn't answered the phone when we call because we don't know if she has fallen or not...she has had 2 additional hospital stays due to infections in her body that we have had to take time off from work for...
I got married when I was 24 and there were many times in my marriage, that I put my mom first...I was there for everything. I went to her house everyday and helped with things like showers, cleaning, cooking, laundry, and anything else that she could no longer do. I did this for about 4 years, and I let it interfere with living my own life. I put a number of things on hold and stayed sad all the time about my mom's condition. I too cried myself to sleep a lot of nights...I wanted to be at the house with her to make sure she was okay, but knew I couldn't because I had a family that I needed to care for. This did cause problems between my husband and I because he didn't understand the disease and how it could affect someone that doesn't actually have the disease in their system. He and I eventually parted ways and I have an amazing husband now, who gives me so much support when it comes to my mom. We have a 6 and a half month old baby girl now who lights up our lives, as well as my mom's. There is so much more to my story about my mom-all of the hard times that we have gone through because of this disease, and ups and downs of everything...just when we think we have a handle on things, something else comes up.
She is now on Tysabri (which I think has stopped working for her), and has a wonderful neurologist, and we have Hospice care-who are AMAZING people! I would suggest you looking into this for your mom as it has helped my dad and I tremendously. I could go on for days talking to you about this, so please feel free to ask anything...we are hoping to find out what else we could do for mom at her next appt with her doctor since we don't think the Tysabri is working anymore...my dad wanted to talk about the pill your mom is on, but it's all just so scary. Like I said, I can go on for days about all of this...but just hang in there and remember that you can only do as much as you can. It's not easy to see our parents go through this...it's a horrible feeling of helplessness.