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Caregiver Perspective: Prepare to Become a Caregiver

Prepare to become a caregiver. In 2015, research conducted by the American Association of Retired Persons (AARP) found that 43.5 million adults in the United States (approximately 29% of the adult population) had provided unpaid care to either a child or adult during that year. With the growing need for in-home medical interventions and the limited resources available, experts predict that the vast majority of adults will at some point during their adult lives need to perform the role of caregiver to someone they know.

Becoming a caregiver

Most of us become caregivers as a result of someone no longer being able to perform all their self-care independently. At first, the transition to a caregiver from friend, spouse, sibling, or child may not be apparent. You merely lend a hand, offer encouragement, give a ride to a clinic appointment, or help with yard work. Gradually; however, the need for assistance becomes greater, and you take on more responsibility. After a while, you realize you now provide greater support (i.e., it’s part of your daily life) because the one who needs your help cannot manage without you. You recognize that what was once voluntary support has now become a basic need for care and your new normal.

Transitioning to caregiving

When you transition over time into the caregiver role, you have an opportunity to ease into your new normal with the person receiving care. Transitioning to the new role is easier if you can talk about the changes as they occur.

  • Establish personal boundaries for both of you.
  • Identify lines of decision making.
  • Establish expectations for when you should step in to help and when you should let them struggle to do it themselves.

Personal boundaries

I want to emphasize boundaries a bit because it’s one of the ongoing challenges of caregiving. They seem to change continuously. In a crisis, when my spouse cannot defend himself, I become “him.” I am his voice. There have been several times when my husband has been in critical care where I monitored all activity surrounding him. At those times, I guarded his safety, protected his dignity, spoke up for his rights, provided him comfort, and offered him security. I placed a hedge of protection around him day and night until he could begin to reclaim some of his power. In other words, I had no boundaries at that time.

When he’s healthy; however, we share in decision making based on who is performing the task at hand and what produces the greater good for his well-being. Most of the time, his needs come before mine even when I’m sick because he can do nothing for himself. If he becomes forgetful and out of habit asks for something when I’m sick that is not essential, he crosses my boundary. In that situation, I speak up, and we correct the situation. In caregiving, there must be a partnership of respect with clear communication of needs. Without it, resentment develops.

Emotions

Once you become a caregiver, you can expect to experience lots of emotions both positive and negative. Emotions can be confusing and at times conflicting emotions can come within minutes of each other. Learn to recognize your emotions as they surface and how to deal with them appropriately.

Caregiving can be a very rewarding experience for those who want to provide care. However, some caregivers provide care out of obligation to family members with strained histories such as past abuse or neglect. Therefore, providing care in and of itself is not always a positive — it’s very individualized, but in most cases, it’s positive.

I would say in a large number of family situations many positive emotions flow forth from caregiving activities such as the ones I personally experience below:

  • I feel grateful that I am able to provide care to my husband.
  • Our love for each other has grown stronger by the caregiving I provide.
  • We celebrate each other’s progress and encourage each other regularly.
  • My husband shows his appreciation often and abundantly which brings me joy.
  • I enjoy feeling helpful and having a sense of purpose and usefulness.

On the other hand, there are also many negative emotions that I also experience primarily due to exhaustion (lack of sleep mainly):

  • Self-doubt:  Will I ever be able to get it all done. Am I enough to meet all his needs?
  • Fear:  Over the years, fear has included so many topics. Concern for his health, the impact of how caring for him affect the children, my job, my health, my relationship with my extended family and friends.
  • Anger: Though I feel ashamed at being angry, I am. I feel the loss of my freedom to be myself and to have a life because once I became a full-time caregiver, I no longer had a life apart from caregiving.
  • Depression: See above. Anger turned inward and not allowed to be expressed results in depression. I’m overweight, out of shape, get irritable, have bad moods, and am lonely.
  • Frustration: Acting irritable, short-tempered, impatient. Frustration comes from having too much to do with too little time to get it all done.
  • Guilt: For feeling all the above. I want to feel only positive emotions. My spouse has a medical condition he didn’t ask to have. He needs help, and when I married him, I agreed to “love him in sickness and in health.”  I want to make it all better all the time but can’t and feel guilty about that.

Best advice

My best advice to all new caregivers has always been simple:

  1. Take each day as it comes. Do not look ahead.
  2. If you look down the road to what might loom ahead, it seems overwhelming. However, if you take each day as it comes, and you concentrate only on that day’s work, you’ll be fine. You will successfully complete the day and move forward. Then when the day further in the further becomes today, you’ll be ready.

  3. If something went wrong today, cut yourself some slack.
  4. You may have learned something new from a mistake you made that you won’t make tomorrow. If so, great job! It was a learning opportunity. Maybe even a great story to share later.

  5. Laugh when you can. It breaks the tension.
  6. We have been in some very tight situations we didn’t think we could find a way out and would suddenly start laughing uncontrollably. After a while, we relaxed, a solution came, and we worked our way out.

  7. God’s got your back.
  8. If you’re a believer, like I am, remember that God’s always there. When I need help, I’ve asked, and He provided. He’s helped me out of many really tough places and carried me through many more. Don’t be afraid to ask. You’re not alone.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Turnippatti
    3 weeks ago

    Such a wonderful article. My husband is having a difficult time looking after me . I was diagnosed late 3 1/2 years ago age 57. We only married 2 years before. Now he hardly speaks to me. Some days he doesn’t. Doesn’t answer me if I’m talking. I have been in a wheelchair since being diagnosed. I feel very lonely apart from going to see DRs and physical therapy once a week. I would be housebound permanently. I have no friends here my school friend lives in uk and Turkey . I even missed my moms funeral as I was advised not to travel on my own to the uk last year. I did enjoy reading your article I forwarded it to my friends overseas and of course my husband.

  • Donna Steigleder moderator author
    3 weeks ago

    Thank you. Maybe after your husband reads the article you could use it as a way to open a discussion about how our situation seems similar to yours. Sometimes talking about someone else can be a gentle way of working the conversation around to yourself. Here’s wishing you the best. Donna S.

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