I’ve been so involved with my struggle with this disease that I neglected to realize how it might be impacting my family or how my increasing disability may be emotionally influencing them.
I feel that this especially applies to my father.
Each new phase of this disease slaps him almost as hard as it whacks me.
It must be hard for my parents having to watch from the sidelines. To see their child, no matter how old, go through a difficult challenge. My parents live about an hour away from me. I wonder sometimes if I tell them too much. I do occasionally review with them the things I intend on writing about. I do this because I don’t want anything to come as a surprise to them.
They witnessed firsthand my difficulty feeding myself. They see my husband helping me in the restroom. During weekend visits to my parents’ home, my mom often physically helps me get into the bed. She even sleeps close to my bedroom at night, in case I may need something. She tends to do what needs to be done in all situations.
I have to assure my dad a little bit more.
I realized this when I found out he asked my mom, “Is Nicole dying?”
My mother calmly responded with the truth, “She’s not dying. She’s just getting worse”.
I forget how I must look to other people who do not know the nature of multiple sclerosis.
I have been living with MS for 10 years. At first I did nor share my diagnosis with my family for about 3 months. I knew I was strong enough to handle the challenges that I would face but I did worry about how my mother would react. I was a 36yrs old a single mother with a good job and a home owner. My mother immediately wanted me to quit my job and move home with my 2 children. She just wanted to take care of me. My MS has affected my mobility but I am able to go to work everyday. I raised 2 kids and I am helping to take care of 2 small grandkids. I constantly have to reassure my 76 yr old Mom that I am ok. She still sees me as her baby and wants to protect me. I just feel bad that sometimes I cannot do more for her because of my own challenges..
My mother died 11 years ago, I became sick shortly thereafter and I remember my aunt saying to me – If your mom hadn’t died – this would have killed her. I didn’t believe that until my mom’s best friend told me the same thing 2 years later. I don’t know how my mom would have reacted, but I see my father and he doesn’t really understand, I think he might be scared of knowing more. When I couldn’t walk last year he seemed so sad and disturbed he couldn’t help – but the truth is – I live here! He’s still providing the roof over my head, and I’m so grateful. When one of us has MS – it affects the whole family unit.
Max, Yes it does. I’m pretty sure my mother has better grasp than my father
Another thoughtful and thought provoking post Nicole.
Marie, Thank you for reading.
I agree that it is very thought provoking and the fact that she Thanks you rises in me the guilt. I noticed that I was thanking people so often they would say I had no reason to thank them it was their honor. I wondered if I was coming off insincere.Istopped thanking, it is had become a habit more then sincere thought. Now I have noticed that I am appearing to be ungrateful. I rather appear grateful, inspiring more to help those in need. Thank you for sharing your writings.
Cindy, You can only be responsible for your part.
Nicole, can relate. The other day I was on my scooter and a friend’s four year old seemed frightened of me. I even offered her a ride. Last time I saw her I was walking with a cane. As for parents, my mother recently died and I feel relieved that she won’t have to watch me decline or worry about my care. My father died before I was diagnosed. It would have been hard for him too. Thanks for your shares.
Mimi, thank you too for sharing. I have not come across a child that is scared of me with the exception of the one that asked me, ” can I get it?
Nicole, as you know, I have MS. I also have a brother with MS — diagnosed in the 1970’s. Now, one of my grown daughters has the demyelinating lesions indicative of MS. As a parent, the news of my daughter was devastating. Although my MS has remained relatively stable which allows me to remain active in my 70th decade; I am on constant alert watch for changes in my daughter’s symptoms. Which is harder? Having MS or to stand by a child or a sibling that have MS. For me, it is the later. I can completely understand the emotions of your mother and father. It is not easy watching a child (even when they are grown) deal with the effects of any disease. You want to hug them and make it go away…but, it doesn’t. Bless your mom and dad for being close to your side.
Sharon, I have not heard that from anyone else. I can’t even imagine it.
Nicole, your father’s love shows through his concern! I know my dad would have cried seeing me struggle, so in that respect I am glad he had passed before he had to watch. I would have felt so terrible hurting him. Thank you for sharing your personal thoughts on your journey, it helps me and I know others are blessed as well.
Kim A, Wow. Thanks for reading.
Wow, I am lucky to have support at home and friends when I’m out and about. My Jim helps me with everything but I can still do most things myself.
My parents are both deceased now, but my father never really understood the problems I was having because his own health problems were all he could think about.
When I go to a nursing home I see the sick and elderly coming to visit the sick and elderly. We take care of each other as best we can. I hope I don’t become so self-centered that I lose compassion for others who are also suffering.
Thank you, Nicole, for bringing up this aspect of how MS affects others around us.
Roberta, You’re welcome. I hope to continue growing a compassionate outlook.
I am so grateful for the support my husband and family give me. They’ve been through a lot and I know they feel the same emotions that I do 🙁
Nina, I am too! Unfortunately, I tend to forget that they may be going through some of the same emotions.
Thank you so much for acknowledging the impact on others, especially emotionally. We must all accept this MonSter in our lives, and help each other cope in a positive, loving way. Thanks Nicole and you have a beautiful smile.
Shelly, We must.
I can understand where your coming from. My grown daughters and I were eating at a restaurant and they were texting each other back and forth and I said what is so secret that you can’t speak out loud. One daughter was asking the other one if Mom was always left handed when eating and she didn’t realize it. It was an eye opener to me that not seeing me for over a year the changes I had come to be second nature was disturbing to my kids. I quietly explained I was okay, just losing some strength in my right hand.
April, it sound like you are familiar with my experience.
I can’t imagine what it would be like to see one of my children going through this, instead of me. I really hate to see my kids going through any kind of difficulties or sadness. And I imagine in some ways it’s harder for your dad to see, than for your mom. Men don’t usually have the natural instinct that moms have to nurture or care for the sick.
How lucky you are that you do have help from your mom when you visit her, and I recall an aunt. Not to mention your husband. My mom is 25 miles away, but it can easily take an hour to drive there with traffic. She’s in really bad shape from arthritis and can’t use her hands at all. She has daytime caregivers throughout the week, except Sundays. I visit her on Sundays, but she has to use her walker to shuffle out to my car, because I can’t get in and out of the car without help. I use the ruse of taking her to the McDonald’s drive-thru on Sunday mornings. I do everything I can to hide from her how bad my condition really is.
I have no movement from the chest down. Which might not be so bad if I could bend easily at the hips and knees, which sometimes I can’t. My husband and kids give me no help at all at home. I have to get in and out of the shower and the bed myself. Yesterday I slipped and fell getting out of the shower. I have to dress myself and most of the time I have to prepare my own food. It feels impossible to do those things but I struggle and struggle until they’re done. I mean it can take 20 minutes or more to simply put my underpants on, because I can’t bend my knees to get my feet through the leg holes. I wonder at what point the basic things will truly be impossible no matter how much I will myself to do them. And I wonder who then will help me.
Laurie, I’m sorry for you. Please hold on and keep doing what you can.
Hold on.
These pages help me remember whaT I have To be graTeful. I don’t do the typing for my voice dictates for me, no longer having the control even on the voice that I would like, I keep saying it plays capitals where they should not be. I am NOT yelling at you. I moved away from all family members, in the late 1970s. I moved several states away.This was before I knew that I had MS. Family that I moved away from moved into the state I had moved to, one by one.
I located 1 state further west, as far as I could go in the continental US, then family members started to die off. Indeed,grand mother, father, step mother displayed great remorse over my illness. NothiNg they could have doNe eveN though they were greatly depressed by it. I was fall while I am alone, I wait for 20 minutes or so and my energy has recovered enough to get over to the tub or, get into a chair. These days I’m bashing my head inTo The wall, my doctor nonchalantly stand I was lucky that was only to the front and to the back, it is hard. Lucky it wasn’t to my tempLe. The nexT day I fell and iT was To my Temple. I got a personal alarm, one that I don’t need to pay a monthly prescription to. EvEn in poor hEalth I am chEap.
I was relieved that my Dad had already passed when I was diagnosed. It would have been awful for him to see me declining. My mother has dementia, so she’s unaware as well. It’s hard for me to watch my children as they see me struggling. We try to stay upbeat, but sometimes, that’s difficult, too. It’s a rotten disease!
Muff, I agree.
Nicole,
This blog reminded me how interconnected our lives are on this journey! Some moments I feel the ms circumstances and situations allow others to express their love and compassion.
I have to remind myself, past and future thoughts weaken me! That all power is in this moment , that is all I have to do is be present.
As you are” a present a gift”
Thankyou
Angela, Thank you.
Nicole wow this post really hit home for me as my father thought that my MS was some form of cancer I did not know this until later sadly I lost him unexpectedly in July of this year. He talked to my mom about it never to me. My parents have always been healthy and to watch your youngest child face everyday challenges I’m sure cannot be easy. I bet you are thankful to have your parents! Please hang in there I am rooting for you. With today’s technology perhaps there will be a cure in our lifetime.
Pam, I’m sorry for your loss. Yes, who knows what the future may bring?
Nicole,
I can definitely relate to the challenge of dealing with others’ reactions to your health journey. It certainly necessitates a renegotiation of your relationships — new boundaries, topics of conversation, new “rules of engagement”. These were difficult for me to navigate initially, being a daughter and sister along with a wife, mother and sisterfriend. I too have reached a new understanding — accepting what is, and giving everyone space to make their own adjustments accordingly has been difficult, but necessary. All in support of everyone’s growth. Along with being an uninvited guest, MS has been an unexpected teacher for my entire circle of support. Continued blessings to you my co-traveler!
Linda, The hardiest thing for me has been “giving space for them to adjust accordingly
Nicole, I hear ya & can def relate. All of my family live out of state so I don’t see them on a regular basis; I do speak to them on the phone. I do not go into any detail of how I am or am not doing. My mom is deceased & my dad is 81 & out of state. My only family here is our children (adults) & my husband, who carries the brunt of my assistance. He is the one who see’s & deal’s with my continuing downward spiral. Our children know exactly how I am doing & help when they are here. We don’t ignore my issues, but we don’t dwell on them either. We have come to accept it as it is & deal with it. I am sure it is difficult for all of them, but we were conditioned for this as my husbands nephew has been in a wheelchair for 33 years (SMA) and we were already used to doing things differently. As far as how you do or don’t appear to others who don’t understand MS, who cares. It’s their loss if they can’t see you BEYOND your disability!
Kim, Thanks.It sounds like you truly understand.
Thank you for sharing your thoughts on this. I believe I need to be more aware if this. Thanks for the reminder.
Marie, Thank you for reading!
Nicole;
thank you for you writings they a blessing to me. I have multiple sclerosis as well. My husband helps me so much when I have bad days or weeks. My dad passed away and my father in law stepped in. I can completely understand sometimes I feel as though I am a burden to everyone in normally the strong one taking care if everyone. Now I feel hopeless. Do you have any suggestions?
thank you and god bless you
shanickiau, I don’t have the magical solution. What I can say is I’ve been there. These are the things that have worked for me such as anti-depressants and writing and horseback riding (it’s 25 dollars for 45minutes) And calling friends, contact me at [email protected]