The Caregiving Years: An Introduction

Six Stages When you expect a child, the community (your family, friends, co-workers) rally around you and your spouse. When you expect your first child, you receive gifts, well wishes and the encouragement that you are entering a wonderful, albeit challenging, chapter in your life. As you prepare to welcome your child, you feel pride at the thought of your role as parent: How you will shape the mind of a youngster, impacting him or her with your wisdom, insights and knowledge.

Now think about a similar life experience, just one on the other end of the spectrum. An aging relative, a spouse, a parent, a grandparent, needs your help. And, you want to help–you believe in making the most of the years you have left together. But, when you tell your friends, your colleagues, even other family members, the comments you may hear are a far cry from well-wishes. “I could never do that! Why do you?” Or, the more common response: “Why don’t you just put your mother (or your wife, or your grandfather) in a nursing home? That way you won’t be so stressed out.”

With support like that, no wonder you might find yourself fighting self-doubts during your caregiving journey, asking yourself, “Why me? Why am I the one to do this?” These self-doubts can erode your ability to handle your caregiving responsibilities effectively and efficiently. Even worse, these self-doubts cloud your ability to understand how important this caregiving journey is–to your caree, your family, yourself.

Which is why I’ve developed The Caregiving Years: Six Stages To A Meaningful Experience. Much like books for expecting parents, The Caregiving Years describes what to expect throughout the journey. By having information about your role as caregiver–you understand what information to gather and the actions to take–you can spend more time making this experience meaningful, for your caree, your family, yourself.

The Caregiving Years is separated into six stages; you’ll find a keyword, purpose and action plan for each stage. Your caree’s illness and diagnosis will determine how quickly or slowly you pass through the stages. While the length of time spent in each stage may differ for each family caregiver, the emotions and experiences will be similar.

~ Stage 1: The Expectant Caregiver  ~  Video: Ask, Stage 1

~ Stage 2: The Freshman Caregiver  ~  Video: Find, Stage 2

~ Stage 3: The Entrenched Caregiver  ~  Video: Receive, Stage 3

~ Stage 4: The Pragmatic Caregiver  ~  Video: Welcome, Stage 4

~ Stage 5: The Transitioning Caregiver  ~  Video: Allow, Stage 5

~ Stage 6: The Godspeed Caregiver  ~  Video: Treasure, Stage 6

~ Your Tip Sheet: The Caregiving Years, Six Stages to a Meaningful Journey

~ Your Tip Sheet: Your Steadies to Continue through The Caregiving Years

~ Resources


 

5 thoughts on “The Caregiving Years: An Introduction

  1. Jennifer Brown

    It’s wonderful that so many resources and support are now available for caregivers. That wasn’t the case in my caregiver years. It would have made a huge difference in many ways. Nonetheless, I did “survive”. However, after reading the short article outlining the stages of caregiving, I would like to add that the last stage can be a bit misleading, and it would be most helpful to address the other side of how it sometimes affects some caregivers’ lives. The last stage states that the at the end, the caregiver will be able to go on and live life to its fullest. While that may be true for many, it is a stark contrast to what life can be like for others. I chose to quit working to care for my mother full time in my home. She did not have Alzheimer’s, but rather had progressive dementia after a severe stroke. The results were similar to that of Alzheimer’s disease. She required 24 hour care and supervision. My siblings were of little to no help. It caused major conflict between us because they resented that I wasn’t working and that my mother and I were living on my mother’s modest income. They considered it freeloading, although I was in my mid 40s and had worked full time since a teenager, earning a comfortable living, independently. So, I lost the close relationship previously enjoyed with my siblings. It has never fully recovered. Plus, after not working for several years, re-entering the job market was a challenge, at best. Not only had I lost income and social security contributions during that time, I had missed out on crucial technological developments and was woefully behind in skill sets, which greatly limited my job opportunities. Hence, I ended up working for low wages, with a temporary agency, just to put food on the table. It took 6 months to get that employment, which meant depleting my savings for living expenses while job hunting. Consequently, I had to sell my home at a great loss to keep from losing it to foreclosure or a tax sale, my car was repossessed and I had to borrow from an elderly relative to get it back. I couldn’t afford repairs to my home for months before selling it, so I was without water for 3 months because of a plumbing leak. I had no health insurance and couldn’t afford necessary medications to maintain a chronic condition. Those are just the highlights of life post-caregiving. It took 5 years to secure a decent paying job. I will never again be able to afford to buy another home, so I am a perpetual renter now. It has been ten years since my mother passed away. I remarried, and lost my husband to illness after 18 months of marriage. The unrelenting stress for so many years has negatively affected my health to the point of not having the energy anymore to enjoy the activities I used to. I am left with a multitude of life-long medical problems. I am estranged from both of my sisters and their families. My support system consists of two fairly new friends, and my remaining brother and his family. So, no, we do not all get to enjoy life to it’s fullest after our caregiving days are over. But, life is improving each day, and will continue to do so. It can be a long, slow, arduous journey, finding one’s way back to joyful living. Guess what the kicker is? I would do it all again, with the same outcome and effects, just to have the honor of being able to keep my mother home and provide her with the same loving, trusted care she provided to her six children, rather than relegate that responsibility to strangers who had no vested interest in her well being, other than it being their job. Those years were the only time in my life that I knew, without an ounce of doubt, that I was doing what I was put here on this earth to do. Other caregivers understand this. It’s a concept that’s sometimes difficult for non-caregivers to grasp.

    I feel it could be helpful to present another other side so that caregivers can better prepare for “life after” than I did. We can’t always just go back to our normal lives. It can take a lot of time and a lot of effort. All that being said, yes, it is most certainly the hardest thing you’ll ever do, but the ultimate reward is worth it. We did what love allows us to do, and are better for it. No regrets.

    Reply
    • Avatar of DeniseDenise Post author

      Hi–Thanks so much for your feedback.

      One of the goals of The Caregiving Years concept is to help family caregivers avoid a really tough transition in their lives after caregiving ends. The concept offers coping strategies and techniques family caregivers can use now to make today better which will make the tomorrows easier. Caregiving includes difficult days as does life after caregiving. I hope the coping strategies I suggest help.

      Reply
  2. david boyd

    Jennifer,
    I can relate to your conclusion, we do it for love, no matter how difficult, no matter how long.
    I care for my wife who has Parkinson’s. despite the difficult moments it must be done,
    children have their own lives to live & friends drift away, I have difficulty understanding that.

    do not give up, you know you did the right thing.

    david

    Reply
  3. Vicky

    This article gives the impression that caregiving is only valid in the case that 1) you are keeping your loved on at home with you and/or 2) that your loved one has had a diagonis.

    My mother is 86 years old. She walks, drives, shops, and takes care of her basic financial responsibilities. BUT, she needs plenty of care! She needs help making decisions, she needs company and a second set of ears when she isn’t well, and now, as she moves from her home to a 3 stage retirement community, she needs pretty much everything handled for her: sale of house, oversight of all contracts at new community, etc etc.

    Just because someone goes to a retirement community or to Assisted Living, it does NOT mean that there is no caregiving! I am 57 and I am having a much different experience of that age than either my parents, or my husband’s parents did. My maternal grandparents had live-in household help right until their end, and they lived in another country with lots of family around them. That meant that my mother had almost no responsibility for them. My father’s parents died before much care needed to be taken. Both sets of my husband’s grandparents died fairly young, so his parents were not care givers.

    My husband and I are seeing all but one parent through their old age. And even though we are all fortunate enough that having them live with us is not a requirement, the caregiving IS exhausting. I know that it is taking years off of my life.

    Don’t, for one minute, believe that caregiving at home is the only valid caregiving. It just simply isn’t so.

    Reply
  4. Avatar of DeniseDenise Post author

    Hi Vicky–You are absolutely correct. Caregiving is an experience about emotions not about location. That’s why a comment like ““Why don’t you just put your mother (or your wife, or your grandfather) in a nursing home? That way you won’t be so stressed out”–doesn’t make any sense. Caregiving is exhausting, overwhelming, frustrating. The six stages helps manage the emotions (the guilt, the worry) and the stress of the experience, regardless of where the experience happens.

    Reply

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