Caregiving Perspective: The Many Faces of Care
As a caregiver, I understand that my role involves providing a lot of physical care. For any caregiver, how much care is provided depends a lot on how significant are the limitations of the one for whom you’re caring. For me, the physical demands are many because Lynn’s physical limitations are many. But, in addition to providing his physical care, I also need to provide mental, emotional, spiritual, and social care. The physical care is pretty consistent in that I know in advance what I’m going to need to do for him and how to do it; however those other “care” needs are more unpredictable.
Mental and emotional care
We’re pretty lucky in that so far Lynn’s MS has not affected him mentally in any significant way. He has had periods of depression and is in fact, on an anti-depressant to address that problem. When he first became depressed, I didn’t catch on right away to what was happening. I expected him to be down; after all, he had gone from being a very physically active independent person to someone totally dependent on others to provide for his every need. He had a right to feel frustrated, angry, discouraged, afraid, sad, and any number of other emotions. Plus, he just felt bad. Since he had so many legitimate emotions that were healthy and normal for anyone going through what he had to endure, I didn’t catch on to the fact that his level of depression was growing deeper and deeper. When I did finally catch on was when he started making statements such as, “Why bother (to exercise); it’s pointless anyway.” “What am I any good for anyway? All I am is a burden.” He also stopped eating, stopped being interested in any decision making and seemed totally disengage from his life. Suddenly, I had that “ah, ha” moment and got in touch with his healthcare provider to get medication to help. Fortunately, it did. For the most part now, he manages depression pretty well and doesn’t go into long periods of being down, but it’s something I look for all the time.
In addition to depression, he has a little forgetfulness but he’s lucky; he doesn’t really experience the memory issues that many with MS battle every day. He occasionally needs a reminder but most of the time the memories come back with a little prompting.
I believe that we are spiritual beings. I know that, for Lynn and me, we count a lot on God for meetings our needs. We look to our Lord and Savior to carry us through a crisis and to look out for our needs. Our spiritual side is what keeps us going, what provides our comfort, and is often what restores our hope. Therefore, it is essential that I factor in that he needs spiritual care as well as physical care. When there are no viruses or other contagious bugs in the air, he goes to church; however, during the winter months, that’s too risky…too much flu and other nasty bugs to be shared. Therefore, it takes more effort to maintain the spiritual side of life. Lynn has CDs that he listens to which bring God’s word to his mind and helps him stay connected to his faith. In addition, he listens on line to the actual sermon presented at our church. We also have many discussions about our interpretations of God’s word and how Jesus’ teachings affect our lives. It’s a very important part of his care to help him meet his spiritual needs and is why I feel he has been able to avoid greater bouts of depression.
What is social care, you ask? It’s what I consider is his need to connect to others outside our family. He is a sociable person. He loves people and being around them. He is definitely a strong extrovert. Me, not so much. I could stay at home most of the time away from others and would be fine. Though he has had to learn to live in greater isolation to prevent exposure to potential infections, his need for social interaction has not ceased. Therefore, though it’s not my favorite activity, I do try to make sure he can have social interaction with others. Social interaction is a bit more challenging though because of the need for a power chair. Although all facilities are supposed to be handicap accessible, I have found that often they are not. Therefore, I always try to find out in advance of attending an event what handicap accommodations are available to determine how appropriate the facilities are for his use or whether it’s an event better left unattended.
It would be easier if I only had one of these care responsibilities at a time; however, it doesn’t work that way. When he’s physically ill, he experiences emotional reactions. When he has a need for spiritual connection (wants to attend church services), the way he wants to fulfill that need is through social interaction (actually going to the church rather than listening on line); however, his physical restrictions (fatigue, weakness, illnesses, etc.) may prevent that access and then his emotional reaction (disappointment, anger, frustration) may trigger a mental health response (depression). The bottom line is that as a caregiver, I have to be aware of all the “soft” care needs he has and try to address those along with the “hard” care needs in order to achieve a healthy life balance. It’s not easy but doing so certainly improves his quality of life.
Does your employer provide workplace accommodations due to your MS?