I’ve had the opportunity this week to read a few blogs from other caregivers and last week to attend a caregiver support group. In hearing the stories of other caregivers, I started thinking about what it meant to be a caregiver. There’s certainly the obvious answer, “to give care to someone periodically or full-time,” but there is more to the story; especially if you’re a full-time caregiver to someone who is totally dependent on you due to a mental or physical condition. Here’s my take on it….
…first, there’s the physical commitment which takes on many faces…
- If the person cannot “do for himself” then you become his muscles and nerves; not just his hands and feet. It is through your muscles, and therefore, your strength, that he moves to change positions, to find comfort, to alleviate pain, to participate in distractions, to have his needs of daily living met, to experience the joys and challenges of life as a participant and not as a spectator. It is through your nerve endings that his body is protected from water that is too hot, sharp objects that might damage skin, body temperatures that indicate infection, bandages that are too tight, food that is too cold to be enjoyable, and other potential discomforts or enjoyments that he is beyond the ability to change but must rely upon someone to care enough to notice them and adjust as necessary for his comfort and enjoyment.
- The flip side of using those muscles and nerves to provide for care is that you have more aches and pains than you might otherwise have. Your muscles are often strained and in spasm from lifting a body that cannot provide any support for itself. It’s true what they say about dead weight being heavier. A limb that cannot be lifted by the owner is heavier to lift than one that the owner can provide assistance. Sure it weighs the same but the effort required makes it heavier. So you get up in the morning with sore muscles and periodic spasms. A good exercise routine would probably help that but finding the time to commit to that is a challenge (especially if you’re like me and hate to exercise!)
- Besides the daily physical requirement, there is also the fact that you commit to their care even when you need care yourself! Gone are the days that you could lie in bed and rest if you had a cold or migraine. Gone are the days that you can have a GI bug and just stay in the bathroom till you are well. You have to figure out how to get help for the person you’re caring for either in-between bouts of being ill or who to call to come rescue you both. Personally, I’m probably going to have surgery soon and will have to find full-time care for Lynn before I do so. That’s bothers me more than the thought of the surgery!
….Then there’s the emotional commitment or impact….Though the physical aspect is draining, the emotional impact may be even more difficult to handle.
- Again, there’s the emotional contributions of caregiving toward the “caree.” Part of your role includes observing the emotional thermostat of the individual. Are they depressed? Are they becoming angry and difficult to control? Maybe they are afraid about the future or that you will decide not to look after them anymore so they cling to you or try to “guilt” you into staying. Someone who is chronically ill often goes through the emotional stages similar to someone dying, “denial, bargaining, anger, depression, acceptance” with a lot of going back and forth between the stages as they encounter new issues. Guess who has to help them through those stages? The caregiver of course,who is also likely to be going through the same stages themselves.
- The caregiver’s emotional response is often very difficult due to self-imposed
• feelings of deserving blame especially for imagined offenses or from a sense of inadequacy;
• a feeling of deserving blame for offenses;
• the fact of having committed a breach of conduct especially violating the law and involving a penalty
over having some of the emotions we have. Too often we think that we are “bad” to be angry or resentful about being “stuck” in a situation. We don’t want to give ourselves permission to experience the negative feelings we have. What happens though if you don’t allow yourself to express them is that they come out anyway in response to the one being cared for or in destructive ways to yourself. I tend to overeat if I’m depressed and I become overly negative and critical toward Lynn. It’s important to acknowledge the feelings and allow them to be expressed but in a healthy way rather than in a destructive way. Support groups and therapy help a lot with that as well as writing a blog : )
- You also experience the effect of constantly having that person on your mind. You have to plan ahead for meeting their needs…do they have enough supplies, when is their medication refill due, are their bills being paid on time, are their clothes okay, are their meals being prepared correctly, who is going to cover for you when you can’t come by, who will take over if something happens to you….etc. etc. etc.
…Besides emotional and physical commitments, you also become the other person’s “window to the world.”
- You help them remember what day it is and to celebrate the special occasions on the calendar. Often every day is just like the last so it’s difficult for them to keep straight the season or the holiday being experienced.
- They may not read the news or watch it on TV so helping them keep up with current events may be a way to keep them connected (personally, I do not read them either so we could have had an alien invasion and I wouldn’t know about it till someone stopped by and told me about it.)
- You are the one who takes them out into the real world. I admire Patrick, who writes Caregivingly Yours. He takes his wife Patti, who has MS and is fully dependent, on multiple excursions per week. He keeps her stimulated with new places and entertains her with new advantages to help her keep involved in life, even though her MS Dementia is the broad term incorporating diseases and conditions associated with a decline in memory, language, problem-solving abilities, and thinking that affects a person's ability to carry out everyday activities. Abnormal brain activities trigger responses that result in impaired cognitive (thinking) abilities. Dementia may affect behavior, feelings, and relationships. Dementia is usually marked by a significant loss of intellectual abilities, such as memory capacity that is severe enough to interfere with social or occupational functioning. Criteria for the diagnosis of dementia include impairment of attention, orientation, memory, judgment, language, motor and spatial skills, and function. A usually progressive condition (such as Alzheimer's disease) marked by the development of multiple cognitive deficits (such as memory impairment, aphasia, and the inability to plan and initiate complex behavior) would make it easy for him to say they did when they didn’t. That’s try commitment to doing what’s good for someone when it would be so easy to let it go.
Then in addition to being a “caregiver” you add MS to the picture. I know all chronic illnesses have their special challenges but since I deal with MS, I’ll describe that impact. MS is unpredictable. Since any nerve pathway could be affected by the myelin degeneration, ANYTHING could go wrong. What is working fine today might not work at all tomorrow. Someone who is functioning well in the morning may not have the ability to do anything for themselves by afternoon. A simple cold can put them in bed for a month or more and lead to new exacerbations that have long-term limitations. A period of forgetfulness might mean fatigue or the beginnings of MS dementia. And while all these symptoms create challenges, for the most part they do not shorten life expectancy so the accumulation of new challenges goes on and on and what’s lost is rarely regained.
There is no doubt that being a caregiver is a sacrifice of one’s self. For me, I often feel like I am an extension of Lynn and at times, even lose myself in him so that I no longer exist. When that starts to happen I have to work to separate myself from that place; otherwise, depression sets in and I am less effective at anything.
Overall, I feel blessed to be a caregiver. I receive a lot of rewards from being one. It’s the hardest job I’ve ever had to do but it’s also the most rewarding because I’m very fortunate that the person I care for, cares for me, and we share the challenges together. Plus, he’s very grateful and I have much support from our families and friends.
But most of call, I’m blessed because God gave me the spirit of being a caregiver so I am doing what he has given me the talent to do. Not everyone is so lucky and for them being a caregiver is a much greater challenge. To them I say, “do the best you can but don’t expect to be perfect and don’t beat yourself up if you don’t like it. You’re a blessing to the one you care for and that’s enough.”
So am I.