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Caregiver perspective: The Frustrations of Dealing with Limitations

Life at our house over the past month has been rather challenging.  My Mom was just diagnosed with ovarian cancer and lives about two-hundred miles away; so we have moved her and my Dad in with us while she goes through chemotherapy.  Lynn’s Mom has myasthenia gravis and suffers from extreme weakness all the time. She fell while home alone and got pretty banged up though fortunately no broken bones. His Step-Dad was diagnosed this week with lung cancer and has maybe six months to live…and it’s the holiday season.

As the primary caregiver for Lynn, not only do I deal with his physical health but his mental and emotional health as well.  All this bad news has been very difficult for him.  He is angry because he wants to help but is limited in what he can do.  For example, we had bought his Mom an emergency alarm button to wear but she was intimidated by how to set it up and therefore, it was not working when she fell. Lynn had tried to explain to her what she needed to do to start the service but she just shuts down when it comes to technical discussions. Therefore, he felt he needed to go to her house to make sure the system was functioning.  We climbed into the van and, of course, when we get there, his wheelchair couldn’t go inside. (I strongly suspected it couldn’t before we went.)  He was convinced that with the small metal ramps we have, he could get in. I could tell his need to make sure she was safe was over-riding his knowledge of logistics; so we went and I went inside to hook everything up while he waited in the van. His Mom couldn’t come out to see him so I became the liaison between them and made sure his need to see her safe was satisfied.

Now his Step-Dad is dying. His Step-Dad didn’t enter the picture until Lynn was an adult so it’s not the same impact as when his own Dad died with MS when Lynn was twenty but still, he’s known Ben for about thirty years and he is special to Lynn.  Tomorrow, we plan to load up and go to the hospital to see him to essentially say good-bye because we try to avoid hospitals as much as possible during cold and flu season to keep Lynn healthy, I’m nervous about going.  To visit face-to-face versus calling is a choice I allowed Lynn to make because, again, he needs the opportunity to satisfy his emotional needs as well as his physical.

Lynn has really become depressed with all the health challenges affecting our family.  He’s a tender hearted man and though he has great faith and knows each of them knows Jesus and will have a home in heaven, the grief he is feeling over their suffering and uncertain future is difficult for him because he has no control.  He’s trying to control his emotions and not add more to my load but I hear him getting angry and frustrated at minor things as he seeks to write on his book.  He’s sleeping a lot; he doesn’t feel well; he has no patience; and he’s making poor decisions regarding his own health (staying up till 6:00 a.m. while I take my Mom to the emergency room instead of going to bed and getting the rest he needs).  I’m trying to help him cope through humor and helping him find solutions that work for the both of us but I have to admit, my patience is at a limit, too.

Caregivers are used to compartmentalizing so much of their emotions from their job duties.  We experience a lot of the “Scarlet O’Hara” syndrome of “thinking about it tomorrow” and that actually helps us to get through the moment…but, at some point, tomorrow becomes today and all those put off emotions catch up with you.  For me, I notice irritability, especially with Lynn. He’s the “healthy” one I’m caring for now (which is ironic to say the least) but his needs are still more demanding than everyone else’s because he can’t do anything for himself at all.  Plus, his disregard for taking responsibility to care for himself is making me angry with him at times.  We’ve had several “discussions” about my need for him to take some accountability.  While he can’t do much, he can at least give me accurate and timely information about what he needs and he can choose to do without some of his wants so that his needs are more likely to be addressed.

Helping Lynn to be a caregiver for his Mom means that I’m actually her caregiver, too. Therefore, my caregiver role has expanded to include her, him, and my Mom.  I’m a bit tired because of it and could really use some sleep, but I’m grateful that I have the skills and knowledge necessary to really help them all.  They are all great people and if I can do anything to make them more comfortable I want to do it; however, a little more sleep would be a nice thing, too….zzzzzzzzzzz!

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  • Donna Steigleder moderator author
    5 years ago

    Thanks everyone for your kind words and prayers. Life here at the “Steigleder convalesce home” can be exhausting but it’s so rewarding too. I love that God has given me the knowledge and abilities to do what I do but I do realize you are right; a person can only run on adrenal so long. I certainly will take all your well-wishes to heart. God’s blessing to each of you.

  • Dianna lyn
    5 years ago

    Donna, this sounds familiar! I am sure my husband is tired of taking care of me, I was diagnosed with MS in 2007..but, I give my husband the space he needs and also make sure he is taking care of himself..i remind him, I am nothing without him..i cannot fight this MS thing alone. So his sleep is very important, like yours..if you can ask for help..we do, and our friends don’t mind helping at ask! We need time off! You are very special and I am sure your family doesn’t want to lose you! Have a great day..

  • Kathleen
    5 years ago

    I’m new to this but feel a strong need to say that just reading about all that you are doing wore me out! The folks you’re caring for are truly blessed, but let’s hope that you don’t compromise your own health and well-being by doing too much for them. In other words, start taking time for yourself (respite care can cover everyone else) to do whatever it is that replenishes you physically and spiritually. If you wear down to nothing, you’ll join the list of those in need of constant need care . . . and I’m certain that is not your intent. So please take some down time for yourself, you more than deserve it. May you and those you love continue to receive even more blessings.

  • aaosnana
    5 years ago

    Hey Donna, I wish I could send you a sweatshirt I saw the other day that says “If it’s true God only gives you what you can handle, He must think I’m a Super Hero” If anyone deserves that, it’s you! I’m definitely sending positive thoughts your way and hope you remember to take some time for YOUR needs, too. As I’m sure you know, if you don’t take care of yourself first, you won’t be able to care for others – and you seem to be doing an incredible jobs of that. Best wishes to you and all of your family – they are so lucky to have you!

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