Caregiver Perspective: Remember Whose Life You're Living

Last updated: April 2019

As a caregiver, I want to help make my spouse’s life better. I want to help him find answers to his medical questions, assist him in doing the things he cannot do, and help him in whatever way I can. As his MS has progressed over the years, his need for my assistance has expanded to the point that he is now entirely dependent on me for everything.

MS improved our marriage

When we first were married in 1997, Lynn and I had difficulty bonding because we were both very independent. Our marriage struggled because we did not “need” each other.  Having each been married previously, we were capable of managing homes and children without partners; therefore, adding one to the mix required significant adjustment on everyone’s part.

All that changed, however, with Lynn's diagnosis of MS in 2006.  The need to pull together to deal with the challenges of this condition brought us together in the way getting married had not. The illness strengthened our marriage, by teaching us better ways to communicate and compromise.

MS discussion off limits

Lynn watched his father deteriorate from an energetic and robust carpenter who could do anything he attempted to a very depressed, bedridden man who died in his forties. His father probably had primary progressive MS (though his doctor did not call it by that name). Lynn said he didn’t want to hear anything more about the disease that had killed his father. He felt he knew enough. After all, witnessing first-hand what MS could do, he didn't need to read about it, too. He told me I was welcome to learn all I might want to know, but not to share any of it with him. Though I always offered him the option to make decisions himself, he typically waived the opportunity to hear details and went along with my recommendations.

Never mentioned MS family history to doctors

It took years before I was able to convenience Lynn to be tested to find out if he had MS. Since his symptoms were initially mild, he accepted their potential association with other causes. He didn't see the need to mention a family history of MS to doctors. Most of his symptoms only showed when he was extremely fatigued or hot and didn't bother him too much. His lower back MRI did not show lesions. However, his symptoms were getting worse. He was falling, and his hands and posture were affected. Thought he told me not to say anything to any of his doctors about his falling, I could no longer stay quiet. When his cardiologist asked if he was having any other problems, I told him, “Not with his heart, but he has a problem that needs attention.” Lynn gave me the “look,” but that got the ball rolling.

His body, his choice

Daily, I make most of Lynn’s general care decisions. However, I insist that Lynn make all decisions that have long term consequences for his health. He usually discusses his options with me before making those choices, and I typically have researched information for him in advance, but I encourage him always to make the final decision. I think it’s important for him to take the lead on making decisions. The person receiving the care should have the power to say yes or no to the care provided. They need the freedom to control their own lives as long as they can physically and mentally make that choice.

I don't always agree with him, but I respect his right to choose (even if he makes poor choices at times). For example: In the early days before he had his baclofen pump implanted, he smoked heavily. Smoking helped his spasticity. Though his legs would be so rigid from spasticity that I could not bend them, he could light a cigarette, and almost immediately obtain relief from the spasm allowing the leg to relax. It worked every time. I told him how studies proved that smoking made the progression of MS worse, but it didn't matter. He needed relief at that moment more than possible risk of progression of the disease in the future.

Remember whose life it is

I decided to buy his cigarettes and live with whatever decisions he made because this is his life. Lynn has to live with this disease in this body and the consequences of his choices, not me. Each morning we wake up, Lynn is the one who has to wait for me to come to his side of the bed to move his arms and legs to relieve their stiffness from inactivity. He is the one who has to wait for me to insert a catheter into his bladder because he no longer can no longer initiate urination on his own. Little things like having someone brush the hair from his forehead and wipe the sleep from his eyes must now wait until someone else has time to do them for him.

Right to decide for himself

For almost all voluntary functions of life, he depends on someone else to help him perform. However, he still has a right to control what happens to his life. He still has a right to decide if he wants to eat food that is good for him or not. If he wants to smoke or not. If he wants to spoil himself with ice cream and donuts with pizza five days a week. It’s his choice. I’m his caregiver, and I can encourage him to do what’s best for him, but as long as he’s of sound mind and able to make his own choices, it’s his life, and he has a right to make his own choices. If I care for him and respect him as a person; not to mention if I love him, then I must accept his decision.

Seek help

If this describes you and your caregiver, and you can't accept their decision, then you need to let them know. The two of you need to talk and decide what that means for your relationship. There are always consequences to choices-good and bad. If you are at an impasse, maybe a third party can help work out a better solution. Don't give up without trying to talk it out first. Your relationship is worth the effort.

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