How Others See Me
Whether it’s right or wrong, healthy or unhealthy, most of us tend to “take in” the view others have of us. I think that’s especially true of caregivers. Once you become a full-time, all consumed caregiver you tend to lose part of yourself through absorbing the emotions and needs of the person for whom you are caring. I think in some ways that’s what also sets apart the “born” caregivers from those who just provide care. The healthy balance is in knowing how much to absorb so that you can instinctively know what the other person needs and being able to filter out the rest.
When you are very in-tune to the emotions of another, it’s very easy to take on those same emotions. If that person is happy, you enjoy laughing along. If they’re sad, you feel a gloom settle over you both while you try to find ways to cheer them up. When they’re angry, it feels like it’s directed at you, and in fact may be, but the underlying reason for the anger is often their disease process. However, it’s very difficult not to “give as good as you get” when someone is spewing forth hateful or angry words at you. When those words are spoken, it’s difficult not to wonder if you’re to blame or are you doing a good enough job. It’s also very difficult to come back and keep taking it.
I’m very fortunate that Lynn rarely directs anger at me. He gets angry at his situation or the equipment he is using when it malfunctions but he’s very careful not to blame me. He’s very considerate of my emotional needs and very grateful for all that I do for him. But he also has all his mental functions intact. Not everyone who cares for someone with MS or other neurological conditions is that fortunate. When MS dementia sets in, the person with MS might not have a clue as to who their caregiver is or why they have to do what is being demanded of them. It’s heartbreaking to be in that situation when as a caregiver you are doing your best to keep them safe and healthy but they are fighting you each step of the way because they think you’re trying to harm them. I can’t image anything much more frustrating. In those situations you might begin to doubt your own sanity or if it’s the right time to say, “no you can’t have cake for breakfast,” or would it really be okay this time.
There are many challenges that come from being a caregiver that you deal with every day in the privacy of your own home. I know I often devise ways to handle a challenge that to others who might observe from the outside looking in might be seen as being weird or even unsafe but unless you walk in my shoes and have my exact same resources, skills, and time constraints; don’t judge what I do because at the time, I’m probably doing my very best.
It’s easy for people on the outside looking in to make judgments on what you should or should not do. They’ve read an article, heard a story, watched Dr. Phil, or taken a class and have become experts on what should or should not be done. I know mothers are often criticized about how they handle a toddler who acts out in a store or disrupts a waiting room or whatever. They get “those stares” that cast judgment and they feel embarrassed and ashamed to be caught not being the perfect mother. The same holds true with caregivers. In public, Lynn does not want to be fed. He prefers to try to feed himself so I always have available for him special utensils for that purpose and finger foods he can pick up and eat without too much difficulty. However, it’s usually not the same food as everyone else and he usually makes a mess. I can sometimes see the pity or embarrassment in the eyes of others which unfortunately makes us both want to avoid eating in public.
The other reactions I deal with are the assumptions others make about my life. Some pity me for sacrificing so much and being “stuck” caring for Lynn. Others want to canonize me as a saint for all I do. Then there are those who ignore the challenges I have each day and expect me to function as I did when I was not both a full time caregiver and employee; for me personally, those are the most difficult. I can usually straighten out the ones who think I’m “stuck” by sharing what a blessing it has been in my life to be able to care for Lynn and how much closer our relationship is now than ever before. Those who want to nominate me for sainthood only have to hang around with me for a while and will learn that I’m no saint. I do what I do because I want to and God has blessed me with the talent and skills necessary to do it well. It’s not me; it’s Him that gave me that strength. As for the others….
I find the ones who want to ignore my situation are the ones who feel that they must pick up the slack my caregiver role has, in their minds, created in my work role. However, I challenge them to prove how my work has been adversely affected. I do things differently now than before but I still do them well. I can no longer do every meeting face-to-face and it’s difficult to have a meeting without much notice but if they can give me notice and have a conference phone, I can still fully participate. Being on the phone is no different than being in the room as a person who is blind -- other than they just cannot see me. The adjustment is in their perception rather than in my ability to deliver. I have found that in this day of electronics, smart phones, and webcams, I can still participate in most of what happens at work; the only difference is in their perception of my value to them when I’m not physically present. Some people are just slower than others to come into the world of telecommuting.
The bottom line; however, is that I need to filter out all these impressions sent to me through looks, stares, and non-verbal body language. I need to keep in touch with what I know to be true and give myself credit for my creative management style. I “ain’t no saint,” but I am a dynamite caregiver and I can still hold my own in my job any day of the week….so there…..
Do you live with any comorbidities aside from MS?