Caregiver Perspective: Stages of Loss - Acceptance

The final stage of experiencing loss or grief is acceptance. Some people never get there; some get there quickly. Most of the time people step into and out of acceptance at various times based on what is happening around them or new challenges they face associated with the loss.

For the caregiver, at least my personal experience, is that I moved into the acceptance stage long before my husband did. In fact, I’m not sure that he’s actually there yet. I know he has finally accepted the fact that he has MS but I’m not sure he has accepted the fact that his physical limitations are permanent. And maybe that’s a good thing. He continues to exercise muscles in anticipation that he may one day walk, or sit up independently, or be able to use his writing hand again. If he didn’t have this hope of being able to regain some function or of being able to not feel so miserable all the time, I’m not sure that he would not slump into a severe depression.

He did that once and just stopped eating. He ended up in the ICU and it took a while for me to realize what was happening with him because at the time, he also had a severe urinary tract infection with multiple complications that followed. However, one day I realized from what he was saying that he just expected to die. That was the turning point. I immediately got an order for anti-depressants; had a Chaplain come talk to him; and got an order for physical therapy. I knew the anti-depressants normally took a while to kick in so he needed someone to talk to about his future (other than me since I knew he didn’t want me to know he had given up), thus I had a Chaplain come in since he was in the hospital. Next, I needed to show him that I expected him to improve as did the doctors; thus the order for physical therapy. A doctor doesn’t typically order physical therapy for someone expected to die. It worked. He began to improve and was back to his old self within that month (eating within 4 days). Therefore, I learned my lesson that it’s not always good to “accept” the worst.

That’s the risk with acceptance. What is it that you actually accept? Do you accept the disease or do you accept the eventuality of total disability and death from complications? One is healthy; the other is not. The disease is a fact. MRI and other tests show evidence of MS. His symptoms support that evidence; therefore, he has MS. However, the course of that disease is not inevitable. I don’t want him to accept that he will become worse and worse until he dies because if he does, then he will.

What I want him to accept is that he does not have the same abilities as he once did and that what has become a permanent limitation may have some improvements but won’t just go away. I want him to accept the fact that he will not walk again. It’s been too long. He’s been unable to stand up and walk on his own for over six years. He sits in a wheelchair 20 out of 24 hours a day. His knees practically have contractors in a bent position due to the fact he sits so long. His muscles have deteriorated and to overcome that loss, he would have to work very, very hard to recondition his muscles. He does not have the energy to do that. His fatigue is severe so even if he had the will he doesn’t have the way to be able to do the required work. Therefore, I want him to accept that he is not going to walk again and that he should not strive toward that end.

On the other hand, he can “stand” (be upright) with assistance (something holding him up completely) and if he does and can increase his tolerance to standing, then it would improve his overall health. Striving toward standing with assistance is a form of acceptance. He has set realistic goals that support hope and well-being without including the unrealistic goal of walking. “What about people who do walk again?” you ask. While it’s possible, it’s not likely and realistically I don’t have the ability to give him the time and attention he would need to get to that place nor do I have the money available to pay someone else to help him get there. What might be possible; therefore, for some is not realistic for him.

I have accepted that he needs me to be able to stay alive. He needs me to be his hands and feet, his cheerleader, his confidante, his physical therapist, nutritionist, nurse, and full-time domestic helper among other things. I know he will not be able to be my protector or the family bread-winner. I know that every day is filled with risks for him—risks of infection, injury, system failures, and emotional pain. I know that he is in the later stages of MS and that when that occurs, the likelihood of life threatening complications is great. I accept that. While I plan for the future accordingly (which he sometimes sees as me being too negative), he chooses not to accept many of those risks as being a fact of life. Instead, he says he knows I have that part covered and he prefers to hold onto hope. That’s a challenge for me but one I accept. I would prefer, I think, to have his decisions based more on reality but then again, I want him to have hope so I just deal with it. For me, that’s acceptance.

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