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Take Care of Myself?

While I know people are well meaning, when they remind me to “take care of yourself,” I honestly want to ask them, “Now, how do you suppose I do that?” People who have never been full time caregivers while jointly being a full time employee and at the same time being responsible for the food, shelter, transportation, maintenance, solving problems, researching issues, managing medical care, providing entertainment, comfort, and encouragement….have no idea what they are talking about.

I was sharing this week with a colleague how overwhelmed I was over Christmas with my father-in-law dying, helping my mother-in-law find hospice and companion care for him, helping her maneuver through insurance changes, keeping a watchful eye over my Mom who has chemo every three weeks and was admitted to the hospital for fainting spells, doing Christmas activities (mainly as a respite from medical issues) and helping Lynn who was depressed over his step-dad’s impending death and who was bummed out because he could not help me with it all.  Now, don’t you think that list of “to do’s” is a little overwhelming?  Well, at the same time, one of my four employees who handled a unique function for my team resigned, I had to start recruiting for her position, a consultant was coming in to our department who needed information, and various other challenges were being thrown my way that were work related. That’s a lot of stuff to juggle in 24-hours. My usual amount of sleep was 4-5 hours a night; so I was running on empty and admittedly using caffeine pills just to keep going. …and she tells me to “take care of yourself.” …Really??  What is she expecting—for me to eat healthy, exercise regularly and get plenty of sleep?

I wonder what people think sometimes when I tell them about my life.  Do they think that I can just call up the local “help” agency and have a fully trained, caring individual come help me out so I can take a nap?  Do they think I can just say, “Lynn, see you in a few hours.  I’m off to the gym,” or that I can choose to go to bed earlier and sleep later because all that stuff I’m doing is not essential?  I guess, they think I can just say, “No.”  However, “no,” is not an option.  Have you seen that commercial where the Mom or Dad is feeling lousy with a cold and comes into the baby’s room to say, “I’m feeling sick. I won’t be in tomorrow.”? That commercial gets attention because any parent knows you can’t just tell your child you’re taking the next day off and leave them to their own devices.  Well, that’s true too for caregivers. The only difference is that when you’re a full time caregiver, there is never a “next day” when the illness has passed and life goes back to normal because our normal is high demand, adjusting to constant change, and often feeling exhausted and achy all the time due to lack of sleep and muscle strain.

Though I hate to exercise, I would like to be able to walk the neighborhood for exercise if for no other reason than to get fresh air, but I can’t…at least I don’t feel like I can.  To be able to go out for a walk would mean putting in an indwelling catheter just in case Lynn had to pee before I made it back.  Apart from the cost of putting in an indwelling catheter for an hour every couple of days is the fact that every time I insert him, his urinary track gets irritated and I know that eventually he would get an infection. The last urinary tract infection he got, he was in the hospital a month. So how else might I get that exercise? I have a treadmill but when I’m in the house, it’s hard to pull away from all that needs doing. The other factor is that I would not want to set aside time during my workday.  If I exercised I would ant to do it after I got off work at night but our night routine is already 5 hours long and if I added in an hour of exercise that would mean going to bed even later, getting even less sleep and being more exhausted than I already am.

I know the importance of taking care of myself.  I know that if I don’t it’s likely my own health will suffer.  However, when you have so many essential duties and someone counting on you for his/her every need, how do you just walk away to “take care of yourself?”  I haven’t found a way so I keep snacking to keep up my energy, take five minute naps during the day to keep going, and occasional make an extra trip up and down the hallway for more exercise.  I indulge in listening to audiobooks while I work for entertainment and cherish each break when I get it and whenever I get it, because this isn’t going away and I have to keep going.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Larup
    4 years ago

    I am a patient, not a caregiver, so I will never understand where you are coming from. I read your articles though and I hope it somewhat helps me see things from the caregivers side. You are going through so much now, caring for and worrying about others, on top of your husband and his disability. This very hectic time will not last forever. My mom became ill before I was diagnosed, but while I was suffering many MS symptoms. I was no where near as disabled as your husband is, but I was sick. I had lots of pain, extreme fatigue, balance issues, cognitive issues and more. My symptoms were invisible and I believe friends and family both, did not believe or comprehend the shape I was in, after all “I looked great”.
    When it became clear that Mom needed help I asked my brother to help. He worked full-time and had one child to take care of on the weekends. I was working full-time, working on my Masters and taking care of my three children. My brother just refused to help with my Mom. He knew I was better at paperwork, but I told him repeatedly that I could not do it alone because of cognitive and pain problems. It was already in writing that we were both POA’s. I had to take mom on tours of assisted living facilities and help her with decisions (neither one of us had fully functioning minds) and engage an elder law attorney. So I was doing all my mom’s and my families paperwork; paying bills, bank accounts, school, , filling out financial aid applications for activities for my children and helping mom with her DNR and Last Will and Testament. In between the driving and work I would collapse and cry.
    One day I could not write the first sentence of a paper I needed to write for school, whereas leading up to then I had nothing but A’s on my papers. I later found out that the incredible level of stress I was under is probably what brought on a major MS exacerbation and absolutely destroyed parts of my brain, but mostly my memory was affected. My pain was horrendous. I had been to the ER several times in the last year and to a multitude of doctors. After an MRI of my neck, surgery was recommended, but I refused until the day came that I felt like long knives were in-bedded in my neck and shoulders and razors were cutting my arms. They performed surgery and I never went back to school again, though I did go back to work six years later. The unsuccessful cervical disk operation left me in severe pain through my neck, shoulders, head, face and arms. Chewing meat and keeping my arms up long enough to wash my hair could be excruciating. It has a name “Failed Neck Syndrome” Lifting ten pounds was my limit and bending over to where the blood pumped to my head and neck was impossible (picking stuff off the floor). My pain was out of control and it stayed that way for two years as the doctors did not believe me. They sent me to a psychologist and decided that I wanted to become a narcotic addict at the age of 45 despite the fact that I had no history to support such a crazy belief. Two years later and one year after being diagnosed with MS the government finally considered me disabled. All during this time I had to get up out of bed for the musts (my children and Mom)
    I had three children, ages 9-14, and thankfully my husband worked full-time, cooked and grocery shopped. My children were suffering my loss as I was not there for them anymore and I cried a lot. I was sick and the caretaker of my mother and 3 children. I never dreamed I would get through the nightmare. Mom got worse and had to go into a healthcare facility and my brothers still believed I had the mind that let me graduate with a 3.65 from college. My brother lived nearer Mom and visited her very regularly. I believe he thought he was doing the physical, so I could do the paperwork.
    I had to go through the process of getting Mom on medicaid. How awful. When I visited mom at the healthcare facility I had to ask for someone to push her wheelchair to take her outside and back in. It did not matter that I told them my problems, I was still given dirty looks because “I look so healthy”.
    Me and my brothers both paid horribly because of my capable brother’s decision not to help with paperwork or go to appointments with me. I did not understand money markets and other investment strategies. I was told by the lawyer that all of mom’s investments had to be cashed in except for IRA’s. I have an IRA, but it is with a credit union. I did not know that IRA’s could be invested in money markets. I did not see where it said “IRA” in tiny letters on the side of her Money Market papers. I cashed them in and when Mom passed my bothers and I inherited $500.00 instead of the $14,000.00 we would have if not for that mistake. My brother’s said nothing when they found out about the mistake. They both knew they had left it to me even after I told them I couldn’t do it and begged for help.
    My point? Some of your burden is temporary. I worry about you though because the level of stress you are under is likely to make you sick. Please seek help as mentioned by Tommy Johns. The help is out there. Give yourself a little time off weekly. You must have a social life. You will not be any good to your husband if you get ill and you are likely to. Surely your husband will understand. If you can’t afford to pay an agency for one afternoon/day, keep looking for other alternatives. Look on care.com. There are skilled caretakers available. It would probably cost you less because there is no agency involved. I myself was recently hired through care.com. I understand anyone’s hesitancy to hire a stranger, but if you do your homework you will find someone. I had my background check and several references on my profile. The person who hired me asked for more and I gave it to them. I emailed my diploma and proved I had jobs that were listed on my resume. I understood, because I could have been lying about it all. Then they stayed with me for the first four days I worked to make sure I was competent and the right fit. There is help out there and you must have a life outside of the constant pressure. Join a Book Club, do yoga, join a hiking club, volunteer at a Theatre and see plays for free. Start with once a month and then hopefully one day you and your husband will both realize you need more of a break from the constant stress and you will give yourself one day a week instead of just one day a month. You can find someone that you and your husband will be comfortable with. Don’t stop until you find someone to help you.
    Myself. I divorced my husband when my MS went into remission because he destroyed our finances and my credit by not paying my doctor bills because we could not afford to. He never picked up a phone to ask about financial aid or payment plans. You see, I did give some of the work to him while I was sick and taking care of Mom. It was a mistake. I can work a whole 12 hours a week. I am alone, 53 yrs. old and my MS is acting up. I have not a clue who my caretaker will be when I need one.

  • Donna Steigleder moderator author
    4 years ago

    Larup,You are absolutely a caregiver. The care you provided for your mom was essential for her well being. You certainly deserve the acknowledgement that you were every bit a caregiver as if you physically picker her up and moved her. The burden of care giving on top of a medical condition like MS must have truly been overwhelming much of the time. I sincerely hope you condition improves and that you have someone to care for you if the time comes that you need it. Thanks for sharing your story and for your suggestions.

    Donna

  • Tommy Johns
    4 years ago

    Well said. As an MS patient that has watched my wife, also called Donna, take care of me for the last twenty years, I’ve often said she has it every bit as bad as I do. She works at least 40 hours a week and takes care of me. I know she gets tired, frustrated, aggravated, and depressed. Occasionally it will come out vocally, but very seldom. I even thought maybe I should try to talk her into leaving me so she wouldn’t have to deal with it all the time. But I know she would never do that. So what is a person to do?
    In my untrained and uneducated opinion, the first thing we have to do is, understand that one person can’t run the entire world. Superman and superwoman do not exist. Check with the office on aging, the MS society, your local church friends and any other organization you can think of and trust. if you can free up a few hours one day a week I bet things would look a lot easier.
    And remember to “take care of yourself”. Sorry could resist. 😀

  • Donna Steigleder moderator author
    4 years ago

    : )

  • Tommy Johns
    4 years ago

    “couldn’t”

  • Michael Roe
    4 years ago

    This was well said and I was there myself. For the last year I was the caregiver for my terminally ill younger brother. Just last summer I started having serious balance issues. This lead to my diagnoses of MS. Along with my emphysema I struggled with all that’s required of a caregiver. My biggest nightmare was dealing with his Medicare insurance carrier. Moving my brother from where he lived in N.C. to my home in Tn. was the biggest hurdle insurance wise. Plus finding him a Dr. I was surprised how many Dr.s are reluctant to take on a new terminally ill patient. The stress of all this kept me in a state of a ticking time bomb. When I was finally able to convince my brother of the idea of hospice, it was like a huge weight being lifted off my shoulders. A nursing home was out of the question. I just couldn’t do that to him. I promised I’d be there with him to the end. On Dec. 14th he passed away. I was at his side. After all the pain and suffering I saw him suffering, it was a relief. Not only did I help him, but he helped me to come to terms with my own illness. But through all this, all I heard from the rest of my family was “you to take care of yourself”. What an easy thing to say. Being a caregiver is a labor of love but is not something I will ever do again, with the exception of my wife. The funny thing is, in reality, she is my caregiver.

  • Donna Steigleder moderator author
    4 years ago

    Michael, I’m sorry for your lose but it sounds like even with all the struggles you are at peace with it. Many of us become caregivers to family members automatically without realizing it because we love and care for them in showing our devotion. I’m glad your wife is there to help you because caregiving is very hard work, especially when you have an underlying condition yourself. Thanks for sharing your story and I hope your own condition will improve now that some of the stress is gone.

  • Devoted to my Wife
    4 years ago

    Beautifully stated. To add insult to injury, I have restless legs. I’m lucky to get sleep 2 hours at a time. It helps in a twisted sort of way. My Wife’s RRMS is a much more intense version of the RLS I deal with so I have some insight into where to rub or push or stretch to buy her a couple minutes relief. I will never stop running myself into the ground for my Wife and family. After all, it’s what I signed on for. Better or worse, sickness and health, richer or poorer… Till death do us part. I pray you all the strength and peace you need to fight this good fight!
    God bless!

  • Donna Steigleder moderator author
    4 years ago

    My husband has really bad spasticity and that restless leg feeling (which I also have like you but am on medication that helps). He started using an electronic peddler so that it constantly moved his legs. He even sleeps in his wheelchair now so that he can turn it on all night when that feeling hits him without waking me up. It might be worth a try for your wife. I wrap his feet into the peddles with an ace bandage and have set the machine on a block to bring the height up so he can lean back in his chair. It’s been such a relief for him. We go NOWHERE without it. I’ve even used it in the car with a cigarette lighter for long trips. God Bless.

  • Able AsWeARE
    4 years ago

    This article reads as though I wrote it. Seriously. Wow. Thank you for this.

  • Donna Steigleder moderator author
    4 years ago

    You’re welcome. I think many of us have had the same experience. Thanks for your comment.

  • Bob
    4 years ago

    How I got MS, I swear I rode in the MS bike ride from Phoenix to Parker Dam CA twice and two years later my legs went numb. Got to be a connection there somewhere?
    Up till then I was 38 and playing 6 full court basketball games once a week. I could still ride 150 miles on my bike. I weigh 185 pounds and still felt good. Five months after my legs going numb I got married. I was still able to stay in shape but my 6-8 games of basketball dropped to 4-5 games because my feet hurt so badly. As time went, 4 years later we had 3 children of our own and I slowly gained weight proportionally to the amount of basketball I was able to play. Being from Indiana I have played since I was 6 years old. Unfortunately by 2000 I was 200 pounds even eating salads and vegetable and my feet still felt like there were marbles in my shoes the more I ran but I walked out of the gym leaning slightly onto the walls.
    Then optic neuritis hit me and I went to the optometrist and he sent me to a neurologist. I was apprehensively happy when the optometrist told me he thought I had MS. I started Interferon on January 3 2001 in Huntsville, AL. Moved to Wichita just in time for 9/11 and was laid off on Jan. 25th 2002. What a life. I was rehired by Feb and worked in Altus, OK where dreams die. I engineered the repairs on C-17’s at Altus AFB. It seemed promising and I got to play 3-4 games of basketball twice a week. I got my weight down to 195 pounds and was feeling good. My wife and kids were still stuck in Wichita since I was laid off by Boeing 2 weeks before I was hired they wouldn’t buy my house and move my family. Then in 2003 the MS society found me and asked if I wanted to ride. I thought sure why not. Altus gets very hot in the summertime. Around 95-100. At least I new I had MS and the symptoms so I can’t say I didn’t know what was going to happen. I got to Tulsa after riding about 6 miles a day practicing. Truly not adequate as far as I was concerned. I made it to the 27 mile mark when while speeding down a hill I was dreaming I was ‘healthy’ and thought I could go faster than 45 mph so I pushed down and my toe came loose and hit the ground and I broke my big toe. I still managed 60 more miles the next day. Back at work I finally threatened Boeing with quitting while talking to the VP of C-17 on a visit. A week later they authorized the move. So now because all our money ran out hanging on to two houses we didn’t have enough money to move into a bigger home so all 6 of us moved into a 2.5 bedroom 1 bathroom, 960 sq. ft. home built in 1901. There is a point to all the stress related stuff which I will explain in a minute. Half of my house hold belongings went to storage. By the time I was through with the perfunctory raises I had ridden in 3 more rides and my weight was down to around 190 pounds. I started to think maybe my expensive Meds were causing my average raises to limit my earning/retirement/kids college money which not improving. So by 2006 I regretfully retired from Boeing with a pension of $8000/yr. after 20 years of service. Now with the good recommendation with the AF guys I worked with I now work for the AF in GA doing the same thing I did where dreams die. My stress level has dropped appreciably.
    2011 I was preparing for my 11th MS bike ride, they upped the money to $250 but I did get my wife and 2 kids to ride. Bad side we didn’t raise enough and I paid $230 out of pocket. I felt good some of us went as a family. The bad news just before the ride I had an exacerbation that lasted 3 weeks. After my ride I found out my legs wouldn’t cooperate with my head anymore. It looks like my basketball playing is over. It’s 2015 and I weigh 225 pounds and my MS is now progressive. My lower back has been tingling since June and it’s almost February 2015. I have an appointment at Emory in 20 days. Long time.
    My wife fights with me all the time now and I noticed I can barely stand up after we start fighting. I have been staying out of fighting by not saying anything but it still does no good. Stress will be the breaking point with MS and my marriage. Last year the MS GA people wanted $350. I don’t believe they treat the people who ride with MS good enough for me to ride in GA. I think I’ll go back to OK. The wife keeps bringing up using a walker or a wheel chair and I keep telling her no way will I relent until I have no choice so stop bringing it up. She got a walker from Goodwill. She filed Divorce papers on November 7, 2013. She stopped it, but she spent $250 last month for a consultation with another lawyer. I think all the time about my MS and what I can do not to stop it but to fix it, make it better, not about the thing I miss with my wife, SAD. I am ready to take a chance on drugs that have a mortality rate just to end the nightmare one way or another. I prefer a great life with a wife that loves me and a good full court game of basketball. Hopefully if I get the basketball I’ll find the other.

  • Donna Steigleder moderator author
    4 years ago

    Bob, I’m so sorry. You have had so many issues to overcome and though you are not technically a “caregiver” the “take care of yourself” advise is common to those with MS too. I really do think stress has a lot to do with how the disease progresses. I sincerely hope that you will be able to achieve some stability in your life soon. Don’t give up; just do one day at a time. That works for me. God Bless you.

  • Pam
    4 years ago

    I’m kinda in the same boat. not as bad as you,,, but my mom is getting dementia, and I seem to become the only child.. when I have bad days and ask for some help , it’s not always there. almost every day it’s only me. my husband helps, but he can only do so much.

  • Donna Steigleder moderator author
    4 years ago

    I found some help from friends and people at my church. Many people do want to help but just don’t know how. Having them come in helps but it doesn’t relieve the responsibility. I hope you find some relief.

  • mscaregiver99
    4 years ago

    Thank you so much for putting this in writing. It is comforting to know that i am not the only one living this surreal life. Albeit, as you say…they DO mean well…but seriously! You know, i recently had family over for a get-together…there was 25 people in my tiny bungalow…i ‘served’ and ‘entertained’ them all, even though it was ‘last minute’, unexpected, and nobody brought anything to eat…7 hours they stayed…and whilst i was busy ‘serving’, my husband managed to wheel himself into our bedroom…he must have disappeared for a good 5-10 mins…and it was “I”, of all people that found him on the floor!…Not one person thought..”hey…where’s “so-and-so”…and the guests…they were my HUSBANDS family to boot!….after helping him up off the floor, got him into bed, closed the bedroom door…i looked out down the small hallway at all the guests…chatting away, drinking away, eating away, and laughing away…and thought WOW this is absurd…they have absolutely NO IDEA! Same goes for when they say “How’s so-and-so?” I simply respond with brutal honesty and i respond with “well, he has MS…and it gets worse and worse every day”…anyway…thanks again for speaking the truth!

  • Chloye Bailey Pogue
    4 years ago

    My heart goes out to you both — I have experienced every feasible comment one can imagine. I cared for my husband with MS for thirty years and loved every moment although my heart broke a little bit each day for all those years. He died nearly eight years ago at the age of 68 and I miss him terribly every day. I know exactly how you both feel. I learned not to complain nor try to explain to anyone because I knew the response I would get — no one understood! I did find a very special person who did understand — Jesus! So I talked to Him all the time and I would swear I audibly heard His voice on many occasions. That is the way I survived! I wish I had had a site such as this on which to vent back then. This is a very valuable service for MS caregivers and patients.

  • Donna Steigleder moderator author
    4 years ago

    It’s amazing how clueless people can be. I realize that unless you “live” it you don’t necessarily “get it” but really….

    Thanks for sharing your story. I’m fortunate that all my immediate family have learned to watch out for Lynn’s status when they are here but still many things get overlooked (like sitting a chair for him at the dinner table instead of removing one for his wheelchair).

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