Prairie Wife of the Week May 9, 2014 (Caring for a Family Member with MS)
Posted May 9, 2014 by Prairie Wife - 7 comments
We often talk about how everyone has a story, and that is what prompted our Prairie Wife of the Week posts. Sometimes it’s a woman we know through friends, from our community, work, and we’ve even met many through the wonders of the internet! This week’s Prairie Wife of the week is someone who I am proud to call both a friend and a family member. I first became acquainted with Rockin’ Piranha when she began to date my BigBrotherB. She eventually married him, which I am eternally grateful for (we never thought we’d see him married off). She has taught me about loyalty to family and strength, and shows more grit and grace than many women twice her age. While I would describe her as a city girl who will never go country I assure you that she deserves to be Prairie Wife of the Week! Many of us haven’t had to think about our parents aging, and what that means for us. But, Rockin’ Piranha had to face the fact sooner than most. Her candid and intelligent answers about living life with a mother who has MS will give you a lot to think about…
Prairie Wife (PW): First tell us a little bit about your family.
Rockin’ Piranha (RP): I am a 32 year old Midwesterner that grew up in central Wisconsin. My father has been a forklift driver for over 30 years and my mother was a manager at a bank. When I was 20 years old I moved to the “big city” of Milwaukee. Shortly after, I feel in love and got married at the young age of 23. The following year my one and only sister moved to Milwaukee to go to college.
PW: Your mom has MS can you talk to us about how she first was diagnosed?
RP: When I was 13 year old my parents took my sister and I on a trip to Walt Disney World, we were so fortunate that we got to do this! On the trip I can distinctly remember my mom having difficulty keeping up. Usually, my mom was a very energetic person, always wanting to try new and exciting adventures but, not this time. Through the course of the trip she started to develop some numbness in her legs while having pain at the same time. However, we continued onward and upward with the trip.
Once we returned back home my mom began to see doctor after doctor. Two years later after hundreds of tests and theories, my mom was diagnosed with Multiple Sclerosis (MS). MS is an inflammatory disease in which the myelin of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a wide range of signs and symptoms, including physical, mental, and sometimes psychiatric problems (most people aren’t aware of this last part). MS takes several forms, with new symptoms either occurring in isolated attacks (relapsing forms) or building up over time (progressive forms). Between attacks, symptoms may go away completely; however, permanent neurological problems often occur, especially as the disease advances.
PW: How did her MS impact you as a child?
RP: Since I had a lot to learn about MS, my first reaction as a teenager was to be angry with the world. I went through the five stages of grief over and over. Denial and isolation, anger, bargaining, depression, and acceptance. I focused heavily on the “why our family” aspect. My mom had to leave her job and go on disability within a year of being diagnosed. The Doctors figured she probably has had MS since high school. From the outside looking in, her MS didn’t seem so bad at first and I felt like she was getting a free vacation. She was also getting a lot of attention from friends and family which made me feel less important. It took me several years and a lot of maturing to get to the acceptance stage.
PW: You made the decision to move away to go to college and now live several hours away, was that a hard decision?
RP: Honestly, my decision to move to Milwaukee was easy. It was something I had dreamed of doing long before my mom’s diagnosis. Also at the time I left for college, my mom’s MS was not nearly as debilitating as it is now. She was able to function within the house without a huge amount of assistance. She could perform most tasks and my dad could help her when needed. On most days she was even healthy enough to drive. Plus my mom has always encouraged me and my sister to follow our dreams, and not be held back because of her.
PW: How has your mother’s MS changed over the last few years?
RP: It has now been 7 years since my mom was able to walk. Over time, she went from using a cane, to a walker, to a wheelchair, to operating a power scooter, and now…..
In December of 2013 at the young age of 55 my mom had to be permanently moved into an Assisted Living facility. This was devastating for the entire family, and frankly we are still struggling. It is now medically necessary that two caregivers are always available to help her through the day and night.
PW: You’ve had to make some hard decisions as a family, any advice for others that may be struggling with placing a parent or relative in assisted care?
RP: Sit down together and talk about things. Whether it is medical questions, emotional battles, or the financial burdens of being sick, etc you need to discuss it together. It should not nor can it be, one person’s decision.
If you are 99% healthy or 99% sick, you should not only have a living will & power of attorney, but talk it over with those who might end up making decisions for you one day. You can always make changes later on if you need or want to. I know that it can be very difficult for some people to think about death. Take your time and don’t push it. But, if you go over things in advance when you are young and hopefully healthy, it will not be as difficult to face.
I highly recommend knowing your State’s policies and laws on disability, medical assistance, caretakers, etc. If you wait until tragedy strikes you will send yourself into a flurry of panic attacks. Make sure you study every little detail. Even though my mom lived with MS for over 15 years before she needed extra assistance, our family never went over the details. Look into how your State provides financial assistance for care. In the State of Wisconsin my mom had to remove her name from all assets and lose a bunch of stocks and savings in order to be placed into a decent facility and have the State pay for some of her care, medication, and supplies.
My dad had to undergo a huge audit and will have to continue being monitored for years. When it gets to the point where you have to be placed into a facility, you are not allowed to just shift or give your assets away. If you want to ensure any inheritance gets passed along to your children, seek guidance early in your life and follow your State’s laws. And remember, if tragedy has already stuck and you are not prepared stay calm. With patience and guidance from the appropriate people you can find the best possible care for your loved one.
I recommend seeking help from a community care specialist. I believe most states will provide this service to you at no cost. They will guide you through the paperwork process, and their expertise was invaluable to us.
It’s also important that you make the decision together as a family as to which facility best meets the needs of your loved one. I made a checklist (please email us at PrairieWifeInheels@hotmail.com and we can send you a copy) when my dad and I were choosing a facility for my mother so that we could remember the places we toured. I’ve attached the checklist, with the hope that this will help others in need. Don’t forget that while you are touring facilities to pay a visit to a resident. It will make their day and maybe yours too!
PW: What responsibilities do you have now as far as taking care of your mother?
RP: All of my mom’s day to day care is now provided for her. I am far less worried knowing that she is safe in Assisted Living. Before she moved into Assisted Living I would worry all the time. She would often fall down and get bruised and injured. She even had to call for an ambulance a couple times when my dad was at work. I was always worried she would fall and hit her head and that would be the end. I feel like a huge cloud has now been lifted from over me.
Currently I do some shopping for her and deliver things right to her when I can make the three hour drive to see her. I decorated her new room to help try to put some excitement into her move. I also do all of her clothes shopping because this would be difficult for my dad to do. You know most guys and their fashion sense! I also recently helped sort through what we now call “dad’s house.” This helped both my parents adjust to their new living arrangements and was kind of the final stage for all of us in accepting her move. It is difficult living such a long distance away but, I do what I can. I try to call my mom at least once a week but it is getting more difficult for her use the phone.
PW: I’m sure that it has been hard to somewhat switch roles, and now you are the caretaker rather than your mother. Can you share what has helped you emotionally with this?
RP: People need to realize its okay to seek help; it does not mean you are a failure! If a disease or tragedy strikes, it is not your fault. It has taken a long time for my sister and I to convince my dad that he can no longer be a superhero. My mom’s MS has taken a big slice out of his health as well. Even though my mom is lightweight, lifting a body of dead weight is very strenuous. He also maintains an entire house on his own. I have no doubt that if he would have continued to neglect his health, I would now have two parents in Assisted Living.
PW: What are your hopes and fears for the future for your family?
RP: My hope is that my mom does not have to continue to suffer so much physically and emotionally. She has no privacy anymore. She is surrounded by elderly residents who have dementia, because it was the floor where she could have the best care for her needs. My parents battle loneliness as they now live apart. Having to sleep separately after 30 plus years of marriage is a shocking change for both of them. I don’t think in my mother’s lifetime there will be a cure for MS but, I do pray that someday a cure will be found.
PW: Any advice for people that are struggling with the care of a sick parent?
RP: Don’t be afraid to express your feelings. In fact, it’s healthy! Everybody’s doing it so get on the bandwagon! I really encourage seeking help outside of your circle of friends and family. Realize you are not alone. I enjoy going to various online medical sites, therapy groups, and chat rooms. Many communities have groups that meet monthly to offer support to friends and family members. Talking to people in similar situations makes yours feel less terrible.
PW: Any last Prairie Wife words of Wisdom?
RP: Never let a disease define who you are. I have never thought of my mom as MS patient 56BTP1003. She is a strong, driven lady who fights to keep her dignity and self-worth. Be thankful for the little things in life. Plan ahead. Find harmony in all you do. Keep fighting no matter how difficult things become.
My favorite musician Ani Difranco said it best. “So I’ll walk to plank and I’ll jump with a smile. If I’m gonna go down I’m gonna do it in style. And you won’t see my surrender and you won’t hear me confess cuz’ you’ve left me with nothing but I’ve worked with less.”
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