Hi, somewhat unusual question here. I'm a nanny of 30 years (employment, not age, don't ask THAT one! ) been with current fam for 11 years, prior, 13 years. Last year I was diagnosed with multiple sclerosis, which for me means no long walks, no highway driving, no floor play (don't think that's ms, just age) and clinging on for dear life to stair rails. No meds, just a lovely hubby to rub my spastic legs. So, my question is, does anybody have any advice for going into a new job, not about the job search, but about working with, and coping skills in child care with this idiotic disease? Do any of the ISYN readers work with ms or know of anyone with it? Been reading for years and know how the ISYN community comes up with advice when needed. Thanks! - Anonymous
32 comments:
Have you considered running an agency? With your background, it seems like it would definitely be a feasible option, and I'm sure that there is someone here who can give you some advice about the business end of things (not minimizing owning a business-it is TOUGH WORK).
OP,
First, let me say I am so sorry to hear about your diagnosis. I am a 27 year old nanny and my mom has been suffering with MS for a while now. I myself was diagnosed slightly over a year ago, though I am very lucky in that I have very few if any symptoms. I am able to continue my work in childcare and look forward to being a mom eventually. I hope I am lucky enough to never have a true exasperation (I was diagnosed by fluke and have only really had some tingling/numbness and occasional clumsiness.) I am doing very well on the daily injection Copaxone (by the way) and do highly suggest getting on treatment asap.
As far as looking for a new job is concerned, its difficult to say because it totally depends on your symptoms and the severity of your MS. My mother had to go out on disability, but maybe you won't have to. I would say if your symptoms are mainly physical, try to find an office job, but even with office jobs, some MS patients suffer from cognitive issues which make it difficult to focus. Listen to your body and do what feels right. Remember that you do NOT have to disclose your condition to potential employers. I did, but only because it was a nanny position and I just felt like I ought to be upfront with them since they were bringing me into their family. They were very understanding and hired me without any concern when I assured them that I am completely capable of performing all of my duties. 6 and a half months later, they agree. :)
Above all else, please do not take your diagnosis as a death sentence. There are so many resources out there...I have done a lot of fundraising work with the National MS Society, find your local chapter and reach out. It feels good to make a difference. Also, MS World has an incredible forum and chat room where you can speak to others who know what you are going through. Find the best MS Specialist in your area. Stay as active as you can. You will be ok...just stay strong. <3
If I may ask, OP, why no meds? Sorry for the personal question, I was just curious. There are medications out there that can help with the symptoms of MS, if I'm not mistaken. I respect your choices, but that's always an option. And as far as opening a business, I agree with Caring Mom - that's tough work! I've opened a business in the past, ran it for almost eight years before closing shop. It takes so much commitment and energy, I couldn't IMAGINE doing it while ill. It takes a special kind of person to run a business, and it shouldn't be something recommended just to anyone without "other options." (Not that you couldn't handle it, OP - handling MS proves that you would more than tough enough for the business world!)
(I had to break this into 2 posts because I have so much to say. This is my first)
Oh honey... I am so sorry for you. But I'm glad that you are coping well with the disease. MS effects people in a VERY broad range, so I hope what I am about to tell you will not scare you. Given your age and the times you were diagnosed in, you will more than likely NEVER have this level of the disease. But the following is my only experience with MS.
I've told my story in the past on ISYN and I'll give you a summery. My amazing mother has MS. She was diagnosed at the age of 16. She has been through numerous experimental "treatments" even included intense rounds of Chemo in the 80s. She was diagnosed at a time where management and help for MS were virtually non existent and I truly think all of the experimental things drs have put her through are a large part of the reason she is the way she is today.
For as long as I can remember my Mom would be rushed to the hospital about twice a year because of a flare up. She would have spasms, her ability to swallow would completely disappear, her speech became slow and full of stutters and pauses. Her hospital stays always lasted 2 weeks on average when I was younger, they became longer and more frequent as time went on. She now averages about 6-8 weeks (of treatment followed by out patient at another facility) when she has a flare up.
She had a baclofine pump put in in the early 90's to give her constant medication. She also went on Avenox shots (that I would have to give her each week)and about a year ago switched from Avenox to some medication they give through a blood transfusions regularly (I'm sorry I don't remember the name). She has had every well known Neurologist and Dr who specialize in MS flown in to see her, and they've all attempted to manage her care. But she has only gotten worse. Those same professionals told my family several years ago that there is nothing more that can be offered to her. There are no more treatments. No more ideas. The best they can do is continue to monitor her pain levels with medication. You name a painkiller and my mom is either on it now or has been before.
(part 2)
When I was in 10th grade, my Dad was sent overseas for a year for work. My Mother and I went in for her quarterly appointment to get her Baclofin pump filled by her neurologist, and he missed the port on her pump, he ended up putting a large dose of the medication directly into her body when it should have been in the pump and released throughout the next 3 months. We had no idea this happened. The next day I came down stairs to get ready for school. Something was "off".. The news wasn't on like it always was, I didn't smell any coffee like I always did. I went into her room to hug her goodbye assuming she had decided to sleep in for the first time in a long time. When I opened her door I heard this terrible sound. Almost like a gurgling. I turned on the light and my mom was having a seizure every bit as dramatic as things I had only seen on tv. Her eyes were rolled back into her head, her mouth was foaming, her arms were drawn up tightly by her face and she was failing about. I panicked. I don't even remember calling 911. I just remember calling out to her, and sobbing hysterically. trying to hold her still. She was my mom and I was helpless to help her. I was 15. The ambulance that I have no memory of calling arrived and took her and I away to the hospital as I called a neighbor to watch my Autistic brother. I tried so hard to keep him out of her room. I knew he could not process that and I did not want him to see his favorite person in the world die.
She had a massive stroke due to the medication that was improperly administered. Her neurologist from the day before just happened to see us as the EMTS rushed us in. I am eternally thankful that he swallowed his pride, risked his medical license and came forth immediately with what he thought may be the issue.
It was right then that I realized, with no family in the state and my dad overseas, I had to step up and take care of my mother and my brother. I dropped out of High School, an A student, so that my mother would not have to go to a nursing home until my Dad would be able to return home. It was the easiest and most difficult decision in my life. I've since returned to school and graduated from a wonderful private university.
My mom is now entirely bedridden. My Dad retired immediately after returning home and now cares for her and my brother 24/7. He refuses to have her spend her last however long anywhere but in the house she loves. I have the most incredible family I have ever known. She is able to speak most days, but her short term memory and her memory of anything after her stroke are almost entirely shot. You would never know when speaking to her the hard life she has had. She is the most loving and positive woman in the world. It's incredible. And now we're... Waiting. Waiting and trying to make the most out of our time left with her. My Husband and I are adopting internationally and are eager to bring her her very first grand daughter. Despite having lost almost all of her memory post stroke, she remembers our upcoming adoption. Sometimes she doesn't know her own name, but she ALWAYS remembers that.
OP, you are a survivor. You are strong. You are AMAZING. I am in awe of anyone who not only deals with MS, but strives to continue their lives with it. You are in my thoughts, my prayers, and I know that you will continue to do amazing things.
I agree with the agency suggestion. I also agree with CM, that starting up a new one might not be the best idea considering the logistics of that. I bet that there are agencies out there (not knowing where you live, it's hard to say for sure) that could use an experienced nanny working behind the scenes on the business end. Definitely something to think about at least.
Lyn. I have no words. I am in awe of you, your family and your dedication to each other. No one should ever have to deal with the things you have. No wonder you are such an amazing young woman. I don't know many who could handle all you've been given and still rise above. Your kindness comes through in your words. You have a great aura around everything you post. Love and light dear. Love and light.
Child care Administration (office clerk/ classroom sub, etc.) might fit well. Anyone your age should not be expected to "lift 40 pounds" or play soccer mom. It's just not safe. Injuries on the job working with kids are very common.
Obviously, you need to work, or you wouldn't be asking the question. You are definitely not alone in your predicament. But it's so hard, and I'm sorry for your struggle.
TTW, thank you for your kind words. It was hard. But I firmly believe those experiences and how you handle them shape who you become in life. There has never been a day where I doubted my decision to care for my family.
If you're interested in child care, OP, and want to stick with something close to that, you may be able to do something in an advisory/organizational capacity for an organization like Big Brothers, Big Sisters or Boys and Girls Club. :)
Op - I have a friend with ms and he has slowly taken on less vigorous work as the years have gone by and is now enjoying desk work. He says it's definitely better for him since he's older and has ms. I hope you find what you're looking for in a job that you can make the most of. Take care!
Lyn, you are amazing! Honestly! You've got a support system here, and so do you, OP!
lyn, was your mom conpensated financially because of the mistake?
Great idea!
OP here, thank you for all of your thoughts. I really want to stay in the nanny profession, I have absolutely no aptitude for business! To clarify my condition, what originally sent me to the doc was pain in my armpit ( wierd ! ) and my only symptoms thus far are balance in heat or cold extremes, inability to walk long distance and fatigue by the end of the day.
Miss sunshine, no probs, I haven't started on any meds yet, because I am leery of the side effects outweighing the benefits at this stage ( I like my liver! ) Lyn, you are a rock and an angel to your Mum, I hope that if my symptoms progress I have someone in my life like you ( I don't have kids ). CMAD, I am hoping to get a job with older kids where I can sit for. 5 minutes and let myself catch up. Retirement is not an option, no 401 k's in nannying. Do not lift 40 pounds, ha! "Anyone your age " , I'm 49! I lift my 100lb dog into my SUV frequently! My sarcasm aside I do thank you for your thoughts . I appreciate all your ideas, you've given mea few things to think about. My current job ends in end of Dec so I am getting the job search started.
I'm sorry to hear about your diagnosis.
Would you be open to working with older children or in a household managment type of role no cleaning just overseeing schedules and such?
Wit older kids you wouldn't need to floor play or take them for walks etc.
Wiahing you the best
OP- Awesome that you're so strong and confident about your physical abilities! I'm 38 and cannot lift a 100 pound dog or anything close due to back injuries received on the job I. The field when Inwas quite young after years of working with infants/ tods an raising one. So, that is where I'm coming from.
It occurs to me that I am actually in a job exactly as you describe you are seeking. There are many families in my area that need after school nannies. There is lots of downtime between running errands, though lots of driving, too.
Hi OP, I'm sorry to hear about your diagnosis. I hope your symptoms will remain relatively mild. I know what you mean about the meds being more scary than the disease.
This doesn't really answer your question, but if you are hoping to reduce your workload somewhat and can't afford to retire (who can?) you might consider taking doula training - a qualified doula can charge more than a nanny and therefore work fewer hours.
Lyn, wow - what a story! You are an inspiration. Don't sell yourself short. I'm sure you must have FELT panicky and helpless but you were the opposite - you acted and did the right things. You called emergency services to get help for your mother, and did your best to protect your brother. You showed great maturity for a 15 year old in a terrible situation. Your mom sounds like a loving and positive person and so do you.
"Mrs Wobbly Legs" hehehe :)
OP, just as a side note, not all of the meds have the scary liver side effects. I chose Copaxone because it really has very few side effects. Just lots of injection sight issues like itching and lumps...but no flu symptoms or liver issues like with the others. :) It sounds like you probably can keep nannying for the time being. That is awesome. Maybe just stray away from toddlers if you're having fatigue problems? Ha my little 1 year old charge is certainly a handful!!!
Bethany, that's what I am hoping to find something akin to household management. DNL40lbs where would your area happen to be? Driving is something I do well, except no highways; I have driven my 97 pathfinder about 5 x around the world! A O'N glad you laughed at Mrs Wobbly Legs, ms nanny seemed too glum and serious!
OP, you're cute! lol, you seem to have a really great personality. And to have a sense of humor behind such a serious disease, I really admire you! Best of luck in finding your next job. Nannying for older kids that you can cart to school and activities might be perfect for you! Please keep us updated? :)
OP- Bay Area, CA
DNL40lbs unfortunately I'm on the other side of continent, MA to be kind of exact, oh well, thanks tho, I think that is what I'm going to look for with my agency.
Aww Mrs. Wobbly Legs you are a sweetie! My aunt had MS and she was a trooper just like you! One thing that really helped her was swimming! She had a massive heated pool built in her yard and swam every morning for at least an hour. She said she always felt amazing in the water.
I'm not sure if you like to swim,but maybe there was some method to her madness :)
Also,have you looked into any homeopathic remedies? I can totally understand not wanting to take medication- as I am very skeptical of side effects , but I have had amazing results with using natural aides. Look into drinking fresh ginger tea and using ginger pastes. I already have arthritis in my knees and hips from years of dance and use the paste when I am having a difficult day and it really helps. I actually found the recipe for it on a MS support group forum! Might be worth a shot!
Just a thought but, do you like animals? Pet sitting is something I do on the side. I make about 200 extra a week and it compliments my nanny salary well. I care for a parrot,elderly cat and toothless bulldog daily. It's a very low key job to say the least.
:)
OP- You could make more independently. I'm certain MA has manyaffluent parents just like here. Is there a local parents online forum? I've found that to be very effective. Also every once in awhile a great family that is willing to pay a fair salary advertises on Sittercity or care.com
Beezus, water therapy helps my mom a lot too, along with strength training. :) Great tip!
OP - I don't know much about ms but
I wanted to tell you that one of the best nannies I ever worked with was twenty years older than you currently are. She was definitely not able to run around and felt most comfortable taking care of infants (she was working as a temporary replacement for us). However she was wonderful with my toddler, and I felt really secure having her around. Her spirit and experience more than compensated for her physical limitations.
Apply to be a paraprofessional in a regular elementary or high school classroom. The older teachers will appreciate your experience and talent with children. Just don't try to keep up with a physically challenged child - they have needs that will be too strenuous for you to meet.
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