An MSA Caregiver on a Yo-Yo


How does a yo-yo go? Up and down, up and down, nice and steady, slow then quick.yo yo

This is how I feel. Slow and sleepy. Sometimes full of energy. Days of quick thinking, others too tired for one thought.

I wonder if this is how other caregivers feel? I wish in some ways they did, then I wouldn’t feel so stupid. And other ways I hope they don’t because this is no fun.

It seems anymore Al’s body is totally frozen. Me or the caregiver do everything we can to keep him comfortable. He has some good days which allow some laughter in the house. But mainly there are bad days, scary moments, when we hold our breath, wondering if this will be Al’s last day.

You know? I hate feeling that way. Who in the world keeps track of breathing, pain, and lack of movement, coughing, swallowing? It isn’t even normal. To a stranger it may seem like this gal is a human freak.

Today, Al was in one of his needy moods. He wanted everything and nothing. He was never satisfied. His biggest complaint was he wanted out of bed. I have heard this many times. I know that last winter when I was sick for 30 days, I spent most of it in bed.

I know how much worse I felt not being able to feel free enough to move around. I kept pondering on that as I kept hearing Al pleading to get up. So while the caregiver was here today I decided to do an experiment.

It wasn’t so much for me. I already knew the answers. It was more for Al. I wanted him to see for himself that he could not get up. I guess it was a test that I hoped Al passed mentally.

So the caregiver and I grabbed a hold of him from all sides and we set him on the side of the bed. The first thing I noticed is his legs. I hate to be so graphic but in order for you to understand how they reacted I have to speak it.

His legs reminded me of a fish just out of water. They flopped around with no control at all. Soon they quieted down and just hung there. I then asked him how he felt but he didn’t answer.

He wanted to stand. Before I answered that I asked him to hold his head up so he could see what he was doing, but he failed. He raised his head about half an inch but it wouldn’t budge above that.

I asked him to raise his legs to see if he had any control. One leg went up a couple of inches and the other didn’t rise. With the head being dropped so long I was afraid he would cut off his own breathing, so we placed him back in bed.

He still told me he wanted to try to stand. So I guess my test failed and he repeated his request for getting up. Now this is emotionally draining to me. I couldn’t please him and I couldn’t do as he wanted.

We are now using the fingers for yes and no answers. One finger for yes, two for no.  I can no longer hear or understand what he is saying. When I lean in close to him I can hear his voice, but still can’t make out the words.

Now he is laying there with no facial expressions. He ate two bites of supper. His hands are so swollen and puffy. I asked the nurse why this has been happening the past few days and she stated circulation, or lack of.

I hear Al rattling but we can’t use the Aspiration machine as the mucus is too far down in his throat, and yet his lungs don’t sound bad at all. He is not swallowing his own drool, and I think it is mixing with the mucus, making him cough so much.

So this is one of those bad days. I get so tired of reading my print back and seeing what a pathetic creature I have turned into. I have considered not writing anymore until this is over, but I don’t think I would survive as well as I have without your comments.

Let’s just face facts. I am not as strong as a Christian should be. I get too tired and too emotionally drained. I try, I really try to be positive, but it is darn hard, let me tell you. I keep finding myself begging God to release Al from his pain. Thousands of prayers are being said for him daily and yet he lingers.

If only I could make these last days worth living, but alas, I can not. All I can do is hold his hand, rub his arm, reposition him, keep him dry and offer him food. The rest is up to him and God.

I carry guilt over not doing better for him. Sorrow from watching him become lifeless, and anger at why he is being allowed to continue on with no purpose. I am sorry, today is one of those bad days. I hope for a better day tomorrow, but I need to be realistic.

Al has seen our parents and Jesus. He truly is the lucky one. He is my brother who has fought this battle with all his might. His legs may have flopped like a fish out of control, but his soul is beautiful like the fish of the sea.

fish

43 thoughts on “An MSA Caregiver on a Yo-Yo

  1. I think when Christians go through difficult times, and when we pray and others pray and the situation doesn’t change… we are human and we feel overwhelmed …. and then sometimes like you are now we get this feeling of guilt… that somehow we should be handling things better. Terry, because of the situation I am going through..totally different than you.. I can empathize with you and tell you that you are doing the best that you can… and what you are feeling is normal… Do not beat yourself up… I can feel what you are about not understanding why God hasn’t taken Al yet, because I went through this with my mother… All I can say is to take each day as it comes because there is no other way it will happen… one day at a time… Diane

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    • Dearest Terry,

      I have been “lurking” and reading your posts for the last month. Thank you for having the courage to continue to write about your journey.

      I was a caregiver for my father, Jude T. Fusco, who was diagnosed with MSA and passed away 2 years ago (12-18-11). I empathize with the responsibilities of a MSA caregiver and deeply feel your pain. Nothing I can say will make things better. It is an individual process that each of us go through. What I do know is that you will never regret caregiving for your brother. It is exhausting and more difficult than anyone will ever understand. At some point in time when Al passes, you may realize that you will not regret a minute of what you have done for your brother.
      I am praying for a “peace that surpasses all understanding”. In Jesus name I pray.
      In the meantime, I encourage you to contact the MDA support group to arrange for Al’s brain to be donated to reaserch. After 2 years, I take comfort in knowing that my father did not die in vain. We donated his brain, received a positive diagnosis on the autopsy and had MSA listed on the death certificate.
      My God bless you and keep you. May He give you and Al peace, love and comfort during this difficult trial.

      In Jesus name,

      Julie Nagle
      Chicago, Illinois

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      • Hi Julie, No more lurking! I need good friends like you in my life. I have been a caregiver for over 20 years and this is the hardest it has ever been. I have never seen anything like MSA in my life. I tried to donate Al’s brain or body here in Indiana. I contacted IU and they flat turned me down. They said Al was too heavy and too tall. Al wanted to really do this. But now I have a funeral planned so I don’t think I could still consider it. Thank you for the prayers and I am so sorry that you have had to walk this path also

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      • Hi Terry

        Robin Riddle from the MSA Support Group helped us with the logistics of brain donation. I could not have done it without her help. It has nothing to do with the height and weight of the patient. The brain is procured prior to the funeral and donated to research to help other MSA patients.

        I know that it is a lot to consider and may be overwhelming based on your situation. If you think you can work through the logistics, please give me a call and I will give you the information.

        In the meantime,

        Peace, love and joy in Jesus name.
        Julie Nagle
        312-560-1669
        Chicago, IL

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  2. “I’m not as strong as a Christian should be”. . . . . really? Who set that standard? How strong should a Christian be? Strong enough to keep going for months and months even when she just wants to curl up in a ball? Strong enough to continue to care for her brother when she really could just send him back to the nursing home?

    Come on, Terry. Please don’t quit posting. I check every day to see how things are going, and so I know how to pray specifically. You need us, and we need you.

    II Cor. 12:9. “And He said to me, My grace is sufficient for you, for My strength is made perfect in (your) weakness. Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.”

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  3. My beloved friend, who ever told you that Christians are strong? We aren’t strong at all. In fact, speaking just for myself, we are very weak. The difference between a Christian and someone else is the fact that we recognize our weaknesses, and we are fully aware of them. This is why we know that we are in such desperate need of a Savior.

    By God’s grace, I have been allowed to witness your pain and your struggles, and I’ve been honored to pray for you and Al and love you from across the country. Jesus hasn’t called you to be strong, Terry. He has just called you to do what you are doing — care for Al, love him, and pray, pray, pray for God’s grace and His strength to see you through this.

    DO NOT apologize to anyone for sharing your pain with us. It is because of your courage in sharing with us, that we know to pray for you. May the Lord continue to bless you, and please know that I am praying for you and Al. Please also feel free to inbox me on fb if you ever want to talk privately. I truly care about you.

    May the Lord bless you and strengthen you, and I pray that Al soon goes home with Him.

    Love,
    Cheryl

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      • Terry, by questioning, and continually praying, trusting and hoping, you are a normal human being who has gone through much, and whose faith has wavered and been shaken, but who still, in the end cries out to GOd in Jesus’ name. God knows your weaknesses better than you do, and He loves you. The only thing He wants from you during this difficult time is to trust that no matter how bad things are, He loves you and Al, and that He is with you.

        One of my favorite hymns to sing during hard times is called “It is Well”, written by Horatio Spafford, in the 1800s. I don’t know if you’re familiar with the hymn or the story behind it, but here is a beautiful rendition of the hymn and its story. I pray that as you listen and watch, the Lord will minister to you and comfort you in Jesus’ name…

        Love,
        CHeryl

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      • I love that song. I haven’t heard it for sometime so it was nice to listen to it right here. I reread what you wrote a couple of times and I feel a little more secure now. If I am a normal person in my actions and thoughts than I can relax. I will still scream out to God and always know he is doing what is right. I can forgive myself now, thanks to your help. Hugs

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  4. Terry,
    My Dad passed January 7,2013. Sometimes when I read your posts it feels like your telling my Dads MSA story. Know that you are doing your best and you are not alone. Caregivers that care for loved ones always feel they are not doing enough. Just know that you being present, loving and sharing Al life with him is a great gift. I will continue to keep you both in my prayers. Take time for yourself when you can and try to accept the things you can not change.
    Becky

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  5. Terry there are no standards or levels of being a Christian…all that is required is to believe in Him. We are all weak and He is our strength, if we were perfect we wouldn’t need the Lord now would we? You my friend have been and are going through so much, let it go rant, rave or cry we are all here for you. You are NOT stupid or a freak you are human with all the frailties that humans have. Take time for yourself and know that we are here in thoughts, love and prayers.

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    • I feel guilt because for me the best part of the day is when I get to go to bed and not think about how sick he is. I am just so tired and I thought by being weak I was a weak Christian too

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      • Hon as tired as you are it is understandable. But let me put it to you this way, if you don’t rest and take care of yourself…who will be there to bath, keep dry, feed and comfort AL ? Won’t be you. Because you are stressing so much and feeling so guilty, your immune system I am sure is suffering and that is when one gets sick. So don’t feel bad about needing and taking rest it is a requirement at this stage. Take advantage of when the aide is there to nap and rest if you can, take a leisurely bath do something to help yourself you deserve it.hugs

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      • no, it is something you make for yourself, a cup of tea with honey and cinnamon sprinkled on top then stirred in. Or toast with honey and cinnamon sprinkled, any where you would normally use honey and or cinnamon…it gives you energy and restores natural antibodies as well. Just be careful to watch your sugar my hubs takes insulin 3x’s a day but he gets one slice whole wheat toast with the cinnamon and honey daily.

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      • you can just type in the combo and see what comes up on other ways to use it. It also helps with sweet cravings. I take a peeled clove of garlic in a tbls of honey everyday followed by a swallow of warm water and it has held colds and flu away for the last couple of years. I still get pneumonia and my COPD excaberates but not as often as I did. Garlic and honey are the strongest natural antibiotic in the world.

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  6. Yes this is exactly how I feel. At times I can handle everything and breeze through life with hubby without a worry, and other times I am so exhausted I wonder if I can go on another day.
    I have been my hubbys caregiver for 17 years this month.
    We were best friends since 1988, 26 years ago.
    It wasn”t until December 12, 1997, 17 years ago, that he called me from another state and said he had not been drinking but he was in another state and had no idea how he got there, or why he was there.
    I drove there and got him and he was scared to death. He told me this usually happens at night time and usually close to home, and if he relaxes he usually can get home.
    Hubby is a full service connected, 100% disabled Nam Vet. Most of the reasons for his mental illness is from Nam and the head injury that got him sent home.
    I moved him in with me, retired from teaching and became his full time care giver.
    When he had his first heart attack in 2001, we got married for legal reasons. He was in Seattle in the hospital fighting for his life asking for me and I couldn”t be there.
    So when he go thome we got married and I he has had more heart surgeries and other medical problems and I have been able to be there with him.
    I have held his hand when we thought he was taking his last breaths several times, when his blood pressure was so low, the drs said he would never make it back.
    I have asked the angels to takehim and make his trip easy for him, and each time he has come back.
    I am grateful my best friend is still with me, but when his care giver is here I sleep.
    I have respite so many times a week to go and do what I need to do and take a break also.

    Sweetie you are one of Als angels and sleep is something you need to do while the caregiver is there and I hope you will be able too.
    Dang I don”t know why I wrote all of this.

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  7. You are not stupid-we all feel like we are the yoyo on the end of the string-sometimes slow and sleepy and sometimes full of energy.
    I used to ask how many people keep track of bowl movements, how often he peed and what color, coughing, cramping, toe movement and involuntary jerking.
    You are not alone and you are not a human freak. You are a loving caregiver.
    Yes sweetie you are strong and you will do this one day at a time. By writing here you give the rest of a chance to communicate and share and we need to do that too.
    I am grateful you are here and I am lifting you up in prayer and asking angels to hold you up when you feel you can no longer take another step.
    Know you are not alone.
    Many hugs your way.

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  8. Oh Terry – You chose a cute picture to go with your post. I know it’s Dory & Nemo. But – for this post – I see them as you & Al. 😉

    You are by no means anywhere near being pathetic. You are on the other end of the spectrum my dear. And – that’s a FACT!
    Don’t even think about not writing any more. If you want to write – write. As your friends – we are here to support you – and – Al too – of course. I say we- because I know that I am not alone in thinking this way.

    {Hugs} to you & Al

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  9. In the beginning I felt stronger and still had the energy to bath and dress my Mom on my own. Of course she herself still had more physical abilities than later. During the last bit I felt useless and weak..weaker than her. By then the only things she could to was manage to smile when possible and sortoff blink. Thinking back I experience so many feelings one of which is very dominant..guilt. I wish I had been stronger till the end. My Mom would tale my hand when she could and softly say “Dankie”..Afrikaans for Thankyou. The truth probably is that I should rest knowing I gave her everything I had the power to at the time and that she knew I loved her with everything I am and will be. My thoughts really are with you and your brother. Give him love like you are doing, that’s the greatest support there is. xx

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    • Bless you for sharing your story with me. It touches me deeply. It also helps me to accept that I am tired because being a caregiver is exhausting. I always wish I could do more, but at this point, there is nothing more humanly I can do but love him and keep him comfortable. Giant hugs my friend

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  10. Terry – you are a strong Christian. You are a strong human being. You are so full of God’s love for your brother. When you said – ” All I can do is hold his hand, rub his arm, reposition him, keep him dry and offer him food. ” – THAT is love. That is God’s gift to Al.
    Keep going…. praying for your strength.
    cate b

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  11. You are a wonderful Christian woman; you and few others do what you can for a loved one. It isn’t easy and of course it will show. Don’t stop writing. It is the only way you can reach out and receive the emotional support we online can give you. Do what you can for him. Do you believe that maybe you reading to him (Reader’s Digest or Guideposts?) would help break the need to get out of bed for a while? You posted his eye sight prevents him from enjoying TV like he use to. He can’t talk but can he hear ok? Maybe giving him a visual break through other stories of people who have traversed hard times but came out in the end better — don’t get me wrong, I understand death is what is needed here– will distract his mind from his own limitations for a bit by using mental imaging of the story being told to him. {{ hugs}} Terri. I hope to meet you one day to hug you in person. You are Al’s angel on earth, sent before you were both born in this time, to be brother and sister. Al ( and you) have been blessed by God — Al having you as his caregiver and you as being the best caregiver you can be. That is what defines a Christian, in my humble opinion.

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    • oh thank you so very much for giving me permission to let out a big breath. You let me know that I am alright, that I am doing good with Al. Oh how I wish I had either the Reader’s Digest or Guidepost. I read Al the Bible and each night before he goes to sleep he ask me to pray for him which I do. But to hear inspiration stories of others who struggle may possibly help him

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  12. Terry , you are a strong person and a strong Christian. It has shown all the way through. SO don’t think you are pathetic as you are one admirable lady! Please keep us inforemd and tell us how you and Al are and coping as we can then help you at least in our prayers and with words. As you say you got us and we are all right behind you to help!

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  13. Pingback: The Caregiving Yo Yo | The Purple Jacket

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