Facing Reality: Caregiving Has Changed Your Life


One question that is often asked on the AgingCare.com forum is, "How do I deal with the reality of leaving behind the life I had in order to become the primary caregiver to my parents?" The words used vary by the questioner, but the question is essentially the same. How do we cope with this major change in our lives?

It may sound selfish to some, but to caregivers who dove into caregiving with full hearts and no planning, then ended up sustaining this life-altering mode for months and often years, it's a perfectly rational question. People put their lives, as they are living them, on hold in order to care for others. That's good. But when "hold" becomes the new norm, there's a mental adjustment to go through. And sometimes that includes dealing with resentment.

Adjusting to the New Normal

Most caregivers go into caregiving mode with full hearts and wonderful intentions. They rarely stop to think, "Hmm, this could go on for years. I'd better plan it out. If I move to part-time at work, have more child care and spend mornings caring for my parents' needs, it will be difficult, but possible. If I continue to work full time, I'll have more for retirement, but I can't do it all. I have to plan this out."

No. We just jump in. Dad has a stroke, so of course we are there to help. He survives but needs a great deal of care. Mom can't handle the hard physical work of caring for Dad. And she's getting forgetful. So, it's up to us. We make sure our folks get in-home help and make adjustments in our own lives so we can give them maximum help. Sometimes, we quit jobs or go to part-time work in order to care for our parents.

No matter what our age when we begin caregiving, caregiving is likely going to change our life as we've planned it out. If we have kids at home, they will have to adjust to sharing their time with you – with getting less of you. If you are older when caregiving enters your life, it often affects your retirement plans.

Deal With Resentment From Giving up Your Life for Caregiving

Many of today's caregivers are couples who have both worked at paying jobs and who had a plan for retirement that included traveling or some other pleasant way of spending their later years. Now, with aging parents who have lived through health episodes that once would have killed them, or a parent who has lived beyond an age ever thought possible only to survive for years with Alzheimer's, today's couples are left with questions and often not just a little bit of resentment. Resentment isn't a pretty emotion, and admitting those feelings to others will not likely bring pats on the back.

Many of these caregivers are not only wondering what to do, they are wondering how to handle the fact that they resent being stuck in a situation that seems to leave them no choices. What are the moral obligations? What are we to do with the tugging at our hearts as we watch our aging parents or spouse linger on, not living a quality life but not dying either? As with so many things in our caregiving world, there's no right answer for everyone. Two different people will react to similar situations in very different ways.

If any of us starts to feel resentment taking us over, it's time to act. Here are some suggestions:

  • If your parents are in their own home, get some in-home help and learn to be comfortable enough with the quality of care they are getting so you can take a day, or a week, off from caregiving.
  • If your parents live with you or you live with them, you still need to look for outside help if you and your spouse can't get away at all. Even a good friend or neighbor may work out as a respite caregiver for a few hours. But everyone needs a little time away from their responsibilities.
  • If you quit a paying job to stay home with your aging parent, thinking it was temporary and then finding that it's going to be a long-term arrangement, you may have to regroup. For your own future, whether it's your Social Security and retirement or your sanity, if you find a nagging feeling of resentment toward you elder because caring for them makes your future look grim, you need to rethink options. It's possible you may decide you still want to stay the course, but you need to make that a conscious choice so you don't feel backed into a corner.
  • If you are running to an assisted living center or nursing home daily to check up on your loved one, say before or after work, and they aren't in dire health, then after reassuring yourself that the care they are receiving is good, take advantage of that care. Sure, your folks would love to see you every day, but explain to them that you can only come every other day and once on the weekend. Unless there is an emergency, they should be fine.
  • Ask yourself is everything you are doing is necessary or if it's about trying to control an uncontrollable situation. Do you really need to be with them every day?
  • Ask yourself if you are performing for an audience so everyone will say "what a wonderful daughter you are," or if some of what you do could be delegated to other people.
  • If you are guilt-ridden or filled with resentment no matter what you do, see a counselor. Talk through what your life, as you are living it, is doing to you. Sort out the things that are really necessary sacrifices – likely sacrifices that you make so willingly you don't consider them such – and what is obsessive caregiving.

How To Lessen the Burden of Caring for Elderly Parents

Yes, some of these questions are hard. It's not always easy to delve into our own reasons for doing what we do and come up with truthful answers. Caregiving can easily turn into martyrdom, and that isn't good for anyone.

Our elders may whine and complain if they don't see us daily, but are they really at risk? If so, we need to look for a way to fix that, whether it's through Social Services or other community services. Check your state's website and find their version of "aging services." Under that link, you should find ways your state uses federal funds to help elders and give help to caregivers. Each state has a version of the Family Caregiver Support Program. It may go by a different name in your state, but they generally give wonderful support – both practical and emotional.

If you don't have siblings to help you look for care options, or you have them but they truly refuse to help, you won't be the only person the Family Caregiver Support Program has heard this from. These folks should have some help for you on the local level.
If you live in an area where you have an Area Agency on Aging, they provide a great deal of community support. You can check out your state on www.n4a.org.

Leave no stone unturned until you get some help. If you need to move your elders into assisted living, then do your homework and find the best option available. Assure them that you aren't abandoning them, but you can't care for them all alone. Most of the time, they will adjust. Often, once they see you won't budge, they will enjoy themselves.

The point is, you must find some balance in your life. If you go years being eaten up with resentment, your own health will suffer. And you won't be as good a caregiver as you want to be. Far better to find some respite and balance your life, once the emergency that got you into caregiving has passed, than to have your own life go down in flames. That is not what your elder would want for you.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

Minding Our Elders

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My Mom was diagnosed with Dementia in 1998. At the time I had just moved back home from overseas because my Dad had asked me to, after he'd had a stroke. I was the youngest daughter, the only one unmarried and I adored my Dad and couldn't refuse his request. Mom's diagnosis happened 6 months after I moved home. I had a full-time job at the time and I took care of Dad until he passed away in 2001. I built my own home and Mom moved in with me in 2003. I changed jobs so that I could work part-time and continue to take care of Mom. Mom is now 91 and to be frank, I am very resentful that I'm still left taking care of her with practically no help from any of the rest of our large family. Most of my Brothers and Sisters live overseas but come to my home (they consider it the family home now because Mom lives here!) every year for their annual vacation and none of them lift a finger to help. Mom has to be washed, dressed, fed, moved with a hoist yet I could count on 1 hand the number of times any of them have fed her and none of them have ever done any of the other chores with her. Because 2 of my sisters donate US$200 per month to an account for me - an another Brother sends me a few hundred dollars once or twice a year, they consider they have done their duty. As for the rest of my siblings - a phonecall once every 2/3 months is the sum total of their interest. I am so depressed and so angry right now. I hope my Mom passes away within the next 12 months because I don't know how much longer I can do this. I've been a loving Daughter up to recently and I don't want it to end like this but I feel so isolated and alone. I'm crying even as I'm typing this. I get 2.5.hrs of home help, 5 days per week. I get respite care for 1 week about 3 times per year. It just seems to me that the rest of my siblings consider their lives more important than mine because I never married, don't have a partner and don't have children. They tell me about trips here and there, granduations, anniversary parties etc - they don't seem to get that I'm stuck here 24/7 taking care of OUR Mother. I wonder if I knew what was ahead of me, whether I would actually have answered yes to my Dad's request back in 1998.
To say our lives have changed as caregivers is an understatement! We no longer have time for us! Just to get the basics done is hard enough, but then to factor in taking care of your other family members wellbeing....... is almost nonexistant!!! All I hear is how admirable you are , if you can do this and everything else too?! What about those who everyday struggle to get by? There are no pats on the back for them?! Except for those who tell us that WE should have more empathy toward the person who needs the care?! There has to be someone who is on constant watch of my MIL, otherwise she falls or does something to herself. I also have a teenager who at this point in time needs extra care as well......who do I have do that? ME, thats who. I am tired of all those who say "Well we can do it why can't you"! I want to tell them to just shut up!!! No one knows my situation,.... just like I don't know yours. People, everyone has bad days, some more than others! Go ahead, scream, cry, hit the door or pillow!! You need a release too!! Who are these superhuman caregivers? Where do they come from? It has been and will be a long journey, because this MIL is basicly in good health, and will probably out live those who are caring for her?!!!! So thank those of us who aren't as tolerant, as well as those who are . Because we give up just as much as those who are so sainted in your eyes! Taking care of family members who didn't care about you when they were cognative, is no pleasure either! Especially when they do nothing but heap constant praise on the family members who can't even be bothered to visit them!!! While we get nothing,.. but more in debt. This is NOT what I ever had in mind for my "golden years", does anyone???
My elderly parents are more financially off than I am. Let them pay for their care when it comes time. Why should adult children be burdened with their elderly parents care when there is more than enough money to pay for their care. I have my own financial future to think about. I am not interested in an inheritence winfall!