You Do What You Have To Do

I am not one who handles change well. I am better than I used to be, but not much. Yesterday I was thrown from the couch with the early news of a text. I was being informed once again that one of the caregivers would not be here.

I try very hard to understand both sides. Al is not as important to everyone as he is to me. I don’t have a husband nor small children and others do. This can be considered an easy job, meaning there is no lifting nor transfers from bed to chairs.

This job is very mentally draining and for me very emotional. The changes occur frequently. Sometimes Al’s MSA will change hour to hour. Staff that works in this house have to be or learn to be flexible or it will definitely become a burdensome task.

Also, I can remember when I was a caregiver for other patients, not family. We go, we do our job and then we go home to  our own private life. I never gave it too much thought how much time is still left in the day for the primary caregivers.

Now that I am that primary caregiver, it is imperative for my mental and physical health that caregivers be here at all times unless bad snow storms hit. I am responsible 16 hours per day and when a caregiver doesn’t show, I am suddenly thrown into a 24 hour day.

I love my brother, but I need a break. This is why I hired two caregivers.  It saddened me yesterday when I was forced to let one of the caregivers go. It just seemed every week there was a day called off.

My friend came here to be with me for emotional support, friendship but I found it disturbing that she was jumping in and doing caregiver work when one did not show up for work. I felt so bad for  having to make this decision, but I have to sometimes put me above even Al.

Also yesterday it saddened me deeply to learn that my friend was going home. It is easy to be selfish and want her near me, but alas, she has her own life to live and I must let her live it.

Now I have one caregiver that splits her responsibilities between her job and here with Al. She is picking up some of the other caregiver’s hours, but I have learned today that I will still carry that sole responsibility of caring for Al each weekend and a couple of days a week.

There are no easy answers. I went for six months without any help and I so appreciate any help I can have for Al and me now. I pray daily that God will take Al home and I will gain the rest that I so desperately need.

I am drained, tired, exhausted, sad, frustrated and yet somehow I get through each day and night. Al will always remain the most important person in this home. I have to do what is best for him even if it means I suffer along the way. He is the one laying in the bed, not me.

The house is quiet. The caregiver is here. I look over at the recliner and I do not see my friend knitting the baby blanket. I don’t hear her sweet voice or see her beautiful smile. I don’t see her eating her popsicle. I miss her so much, but I have learned so much in the past seven years. The most important thing I have learned is life moves on whether we want it to or not.

Life has never nor will be a bowl of cherries. Laughter can not always be made to happen. But I still stride to look for the small things each day to help me carry through. I lean heavily on my friends here at WordPress, through numerous comments.

I lean maybe too much on the MSA groups through Facebook. Maybe I do lean on my caregiver and all of my internet friends, but if I don’t, what will happen to me? I do what I have to do, this is what I have learned through my adult life. God will carry me through, because someone out there in this world needs me.Terry, 2014

39 thoughts on “You Do What You Have To Do

  1. I know that all too often, we don’t even realize those that are thinking of us, that wish they could help in some way… I’ve been through the stresses of caring, waiting, wishing for a different outcome, yet I’ve always been amazed at how giving some can be. Hope you feel the strength sent….


  2. Terry, you should know that even out here in the wilds of Oregon, U.S.A., you reach out and help those of us also caring for MSA “victims”. You help by sharing your day-to-day struggles, your peaks and valleys. You help us by sharing what is happening to Al because those of us not quite there yet, will know what to expect. When you speak of the MSA coming out the pores of his body, it sounds so horrible and disgusting, but even in the knowing, I think I will not be shocked but more prepared if and when it happens to my sister. I learned of a lady in the midwest who recently died – she had MSA, but she died from cancer in the bladder and in the brain. So there are so many forms this takes. My sister’s husband is her primary caregiver right now, but at some point I don’t know that he will be able to take on the really hard things such as you are experiencing. I can only hope that we are all as strong and patient and loving as you are.


    • My dear friend, if only I could help your sister’s husband. I hate it when anyone has to go through MSA all alone. I don’t know how well I would actually be if I didn’t have wonderful friends like you. God bless and if there is anything I can do to help, please let me know


  3. Terry, I need you. I need you to pray for and to love you. I am so thankful for your honesty in your pain. being human in all of this is your biggest gift to us all. if I lived close by… I would work for and with you. many hugs. Lorraine


    • Hi Lorraine, I need you also. Friends, good friends are so hard to find in the world today. We will pray together and for each other. Together we will become solid rocks for others to lean on and gain support. Big hugs to you my dear friend


  4. Good post and Ty for sharing your walk on this path you are walking with Al and the angels.
    When one of hubby’s caregivers can not make it they send a fill in.
    This path may feel like it is a long dark road ahead of you, but when you reach the end of the path you will feel the sunlight of Al’s smile from heaven as he looks down on you with love and joy.


    • I am counting on seeing Al’s smile. He will be so amazed at how wonderful heaven will be. No more pain, no more scorn, no more tears. I know in my heart he will be standing on his two feet, smiling and waving at me, saving a spot for me as he has promised


  5. Terry, I really do think and pray for you both every day. God is and will reward you for your wonderful unconditional love for your brother. As I have told you before I do not have that with either of my siblings. They could care less if I was alive or dead. I have gotten use to it now and God has taught me to forgive them. it is through your dedication and compassion for Al that in some ways I see what I have missed. One of the many awesome gifts God gives to those who follow him are replacements and he has done that for me with friends like you.


    • Oh my dear friend, I do know what it is like to have lost a sibling to the world, so to say. We have a half sister who is a complete stranger to me. I have worked so hard at trying to make things right but have failed. I dread the funeral as she is known as a drama queen, I don’t know how I will handle that situation. I have forgiven her as you have forgiven, but seeing a false mask at a time when my emotions run high will be very difficult. But the good thing from losing a sibling for what ever reason, is God becomes our best friend, and that he has done for you and me. Hugs my friend


  6. In a way I am glad that you let the caregiver go. She was taking the mick by keep coming up with excuses. If you are getting paid to do something, then you have to do it. They are just taking your money.



  7. We all reach that point and there is nothing wrong with you feeling this way. Taking care of yourself is very important and the most difficult as you go through this alone. Dear Terry, I pray every day for you and Al. I have not answers only my love and support.


  8. dear Terry, thank you for sharing all this. You really are doing all you can possibly do and showing a lot of love and strength. I’m praying for both of you


  9. Hang in there Terry, it is hard, rough, exhausting but you are one of the strongest most loving people I know. In and at the right time Al will go home where he can look down on you and smile with the sparkle in his eyes and whisper I love you Sis, you can rest now. Hugs


  10. Oh Terry -The caregiver situation is the pits with them not turning up etc. – makes me so mad! Keep writing to us and letting us know so that, even if we can’t help physically, we can hopefully help emotionally. You are a strong, wonderful person who is exhausted. Love Julie


    • Sometimes it is so hard to write. I feel like a broken record. I hurt, I’m sad, Al is still here, but yet when I read your comments I feel better, so I will keep writing. Thanks so much my dear friend. Love and hugs


  11. Terry, you don’t lean on your group friends, I can assure you, you’re not a taker Terry, and all of us are here to help life you up and give you comfort, comfort and caring for you Terry. All of us I think know how draining what you are going through is, I can’t even begin to imagine how you are surviving this without help. What you are going through is no small thing Terry, its something that the vast majority out there in life will never have to face, and that I have to say a great majority of them would not be able to do, would fail at it. Lean on us, please. Its why we are here Terry, no one can do this alone…no one. Having seen it, I don’t know how any caregiver survives this. You need to reach out Terry, you need the strength of the group. Please don’t ever hesitate….xoxoxox Carol


  12. Terry it is our privilege and honor to be able to know you and support the two of you through this journey. Lean all you want….we’ve got your back. Someday we will each need that same support and it is comforting to know it will be here for us all.
    Praying for you constantly. Someday soon this will ease off for you.


  13. Dear Terry, we are meant to care and to carry, which is this setting means that you make us more human by allowing us to carrying your burden in any way we can think of,which has to be in prayers as you are so far away. That still leaves you with the heaviest burden, but be sure, you are not doing this to Al alone, but you are making the world a better place by showing real love and commitment, so you are doing it for all of us too!Love, Solveig


  14. Keep on leaning. Our needy days will come when we need someone. I’ll wager you’ll be there. in the meantime, I for one, am grateful for the opportunity to do what little I do. As you said, it is so easy for the rest of us who can move on to the next e-mail. Thanks for letting us in.


  15. Terry, I’m touched by every word you have given to me here … and I understand how tired and drained you’re – I wish I could ease all that … I wish I could keep you company, share a meal .. have a glass of wine with you. I understand how hard it’s to be left alone … and how important the hours of your friends company is to you. Terry, it’s so hard to read .. that our life is on hold in all this and there is no other way, because it’s what it’s. You’re an amazing woman, but that doesn’t make you less tired. You are in my thoughts.


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