a young woman sits in a hospital, dealing with guilt and grief

I’d been a bedside volunteer for more than five years; sitting with dying patients and their families once or twice a week for up to four continuous hours. Sometimes I stayed with patients overnight. Regardless how demanding my responsibilities, I knew that when I left the bedside, I’d have three to six days to “recover.”

It was a time to prepare myself for next week’s activities that could range from cooking a meal, to witnessing a friend’s active dying. My downtime—something that allowed me to recharge my batteries—is a luxury many caregivers don’t have.

I thought I understood what they went through, until my wife suffered a stroke from a heart arrhythmia. Overnight, my daughter and I became 24/7 caregivers for her physical and emotional needs. Fortunately, she recovered with no lasting disabilities. But the three-month experience left me with a new and deeper understanding of what long-term caregivers go through.

Addressing the physical needs of someone with a chronic or terminal illness is difficult enough. Adding in the emotional needs of both that person and yourself is like being tossed into a riptide.

I’ve been in patient’s homes where the physical caregiving was provided by health care workers; allowing the family to focus on the patient’s emotional needs. I’ve also been in homes where physical and emotional care were provided by the same person. Unless you have provided constant care for someone 24/7, it’s difficult to understand the struggle caregivers experience between satisfying their loved one’s needs and their own.

For example, after three weeks of redefining my life in terms of my wife’s needs, I stopped activities that had given me pleasure. Although I knew it was necessary to subvert my needs to hers, I couldn’t help feeling some resentment—a totally irrational emotion I was ashamed of having, since I did (and still do) love her, and knew my needs were trivial compared with hers.

Similar guilty feelings are expressed by long-term caregivers. Although these feelings are present, caregivers rarely feel comfortable talking about them. Why? Because the mantle of  “Mother Teresa” is often imposed on them by others or themselves. Expectations, regardless of the source, can become strait jackets from which even Houdini wouldn’t be able to escape.

A patient once said to me, “Dying is hard work.” I agree. Possibly being the primary caregiver for a loved one is right up there in difficulty with dying.  Caregivers experience flip sides of emotions; love—hate, acceptance—criticism, and gratitude—rejection, just to name a few that might occur in a single day. Some caregivers would say within a single hour.

Try to imagine what you might feel after giving up your life to care for an aging parent, who screamed at you that you weren’t doing enough for her because a meal was ten minutes late. And you knew her ingratitude would continue until her Alzheimer’s eliminated this hurtful behavior.

Having contradictory emotions is neither right nor wrong. They germinate from situations that are so expansive, those of us experiencing them are forced to sit still and just observe.

With increases in lifespan, people are living longer with chronic and terminal illnesses. That aunt who 10 years ago would have died from an incurable disease, is alive today and in need of constant care—maybe for the next five years. Will you be ready when it’s your turn to become a caregiver for a loved one?

Written by Stan Goldberg
I am an author of eight books in four languages. LESSONS FOR THE LIVING: STORIES OF FORGIVENESS, GRATITUDE AND COURAGE AT THE END OF LIFE is my memoir of being a bedside hospice volunteer for six years while battling prostate cancer. My next book, LEANING INTO SHARP POINTS: PRACTICAL GUIDANCE AND NURTURING SUPPORT FOR CAREGIVERS will be published in March, 2012 by New World Library and focus on caregiving for loved ones who have a progressive or terminal illness.

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59 Comments

  1. To those who experience this, no explanation is needed. To those that don’t, none is possible..

    Reply
  2. Ciarra Mason you should take a look at this page. So many good articles, advice and simply knowing so many people deal with all of the feelings and thoughts we all have.

    Reply
  3. The part about the contradictory emotions is so spot on for me. I’ve learned to walk away from animosity and regroup for a few minutes before going back in. The 24/7 part is another thing that wears one down.

    Reply
  4. We took care of my Mom until she passes almost a year ago. Now we are taking care of my Dad. This is a long time of care giving that I didn’t ever realize I would be doing. I feel guilty because I just don’t want to do it anymore sometimes. I Miss my Mom very much and so does my Dad. I don’t want to lose him but, know we will eventually. Sometimes I just wonder just how much longer I can go on. I love him so much!

    Reply
  5. My mother is a *Traumatic Brain Injury, Breast Cancer and a whole lot of other stuff in between Survivor*. My partner and I have been her full-time care-givers for 19 years this coming October. I’ve had many people tell me over the years that God is really going to bless us when we get to heaven. My reply is always “That’s nice, but we could really use some of those blessings in the here and now.”

    Reply
  6. Good, straightforward read and I LOVE THE QUESTION AT THE END?? I hope others appreciate it enough to consider how it may impact their lives someday.

    Reply
  7. I have know idea how caregivers do it. I never could. You guys are awesome.

    Reply
  8. If you are a care giver for your spouse or SO check out Spousal Caregivers on FB. We can give you a place to vent and support.

    Reply
  9. I stay up until one or two…

    Reply
  10. I took care of my mom (Parkinson’s) Even though I had caregivers during the week. Stayed up till 11:00pm waiting till the next caregiver was to arrive or her shift. Some times I’d be up till 1:00am only to wake up at 5:00am. I worked full time and my commute was 1 hour 15 mins. I had no life. She past away this last April I’m still reliving the last few years in my head of ER visits, 911 calls.

    Reply
  11. 6 years straight now, 24/7. All I wish or hope for is 1 single day off, is it to much to ask for. I’m a full-time caregiver to my 38 yr old husband, and this is truly one of the most difficult things I have ever had to do. It’s extremely hard but someone has to do it.

    Reply
  12. Sometimes just shaving your legs…and realizing you forgot half of your one leg. Lol!! Xoxo

    Reply
  13. I am available to care for an elderly person who needs my care. In Washington County/Clackamas County.
    16 years experience. Hospice care, Dementia care, Dialysis care and Diabeties care. Can anyone suggest where I can find someone to care for. Any suggestions would be appreciated. Please message me. Thank you, God bless.

    Reply
  14. So glad we at least all get it. I would have gone nuts long ago If I didn’t have my sweet golden needing his walks and cuddles. And he’s a senior needing extra care now as well. At least he’s capable of showing his appreciation!

    Reply
  15. Even if you’re lucky enough to get a couple of days off, you still can’t unwind. Nothing seems to help not even meditation or yoga.

    Reply
  16. Someone commented, “nursing home ” on here… my mother does not qualify for Medicaid assistance. We cannot afford nursing home care. Many are in the same situation as we are. We have part time help but I had to give up full-time employment to care for her. I have just small windows of opportunity to go to the store, doctor, etc. There is no socializing for fun, church, clubs…you give up alot.

    Reply
    • I’m right there with you on this situation. It’s not easy. A lonely life.

      Reply
    • And putting a loved one in a nursing home is by no means ‘easy’ emotionally either. I was pretty much raised to believe nursing homes are places where people go to die. Objectively I guess that’s accurate for the most part – so why on earth would I want to put my disabled/LOTS of work/pain in my arse-albeit beloved husband in one?

      Reply
    • Same here…very lonely

      Reply
    • Joyce Vessell Pyle I am a member of Well Spouse-Spousal Caregivers on Face book. It has been salvation to me.

      Reply
    • One of the myths that people on the outside looking in don’t understand. It is not easy qualifying for Medicaid and the juggling act that many average income families face just trying to stay above water is indescribable.

      Reply
  17. I get freakin tired of my sole existence being to take care of my husband. There. I said it. I do get down time because I work at a full-time (away from home) job, but I’m very seldom alone, just to be with myself. Had hoped to go camping during this holiday break but being female I feel a little too vulnerable, going by myself, so I have to take somebody. My 79-yr-old dad is more than happy to come with me but he doesn’t understand that I really REALLY just need quiet.

    Reply
    • I appreciate your candor. I feel like I am half ( or less) the person I was 6 years ago when I took my Mom into my home. It is very frustrating….you can’t even be sick.

      Reply
    • I KNOW! When I feel bad/ill, my husband is “why don’t you go to the doctor?!” Gee, great idea. Let’s add a day to the week & then make the doctor be in his office & have evening hours – regardless of whether or not “the doctor” can even fix me.
      Oy. Sorry, I’m just feeling hostile today. I’m not usually like this.

      Reply
    • Is it possible to just check yourself into a local hotel for a night or weekend?

      Reply
    • Yeah, actually that could work. My situation isn’t nearly as, um, restrictive as so many others. (I already feel guilty for griping earlier! 😉 )

      Reply
    • Joyce Vessell Pyle I totally get it. I am finally, dare I say at a place where I can live a little. I know the mind never stops wondering and being on alert, but I truly believe that it helps me to be a better caregiver when I have a little down time. Definitely look into a local hotel…no frustrating commute, room service, no clean up, rest, and maybe even a pool or jacuzzi!

      Reply
  18. My only down time is when my husband is asleep

    Reply
    • … or in the hospital … but then I feel guilty for not being AT the hospital with him the entire time.

      Reply
  19. Excellent read…just thankful as I 24/7 care for my 96 year old mother I still have a husband!!

    Reply
  20. Nope because I was a
    Iive-in caregiver for my Mom. She made me leave the house sometimes. After she passed it took months to stop shopping for her. I had to learn how to live without her.

    Reply
  21. I’ve heard of this little elusive bugger you call downtime…..

    Reply
  22. I too do not know what it is to have down time, I am always going in so many directions that I actually feel dizzy at times.

    Reply
  23. Downtime is there it’s just never on your own terms. I can steal an hour or two to myself but then there is all the other stuff that needs doing to keep it going. It is unending.

    Reply
  24. “Try to imagine what you might feel after giving up your life to care for an aging parent, who screamed at you that you weren’t doing enough for her because a meal was ten minutes late. And you knew her ingratitude would continue until her Alzheimer’s eliminated this hurtful behavior.” This is exactly what I am going through now.

    Reply
  25. When I was able to get some down time, I couldn’t relax. I felt like I was still on alert mode.

    Reply
  26. The few times I’ve gotten 20 minutes I can’t relax! So use to being “ready to spring ” that I feel more let down. That and I’ve had 2.5 hours since August

    Reply
  27. Great article stan, I’m always glad to hear from people who write on this site that are or have been caregivers, all of you have my respect. Unlike other writers that are not or never have been caregivers.

    Reply
  28. This is a great article Stan … And it’s shows us even more clearly , that no one can understand what it is like to be a 24/7 caregiver until actually doing it..”like getting thrown into a riptide” is exactly what it’s like..

    You were a volunteer and were sitting with people who were dying all the time .. But it is still so different when you don’t get a reprieve .. And when it’s your loved one with the chronic pain or disease … New emotions surface…. And it’s very hard ..

    I have been traveling that road since 2007 with my husband ..

    Take care
    Theresa

    Reply
  29. I cry as I read this cause I felt for the first time someone knows how I feel. there is no one in my family that understands my moods at times. I take care of my mother who is 92 and has dimentia.

    Reply
  30. Elyse, you need to get some support – counselling – before you burn out completely and will be no use to anyone, especially yourself. Do some breathing – sit with your hands on you knees and breathe in through your nose and out through your mouth. As you do this think of the most beautiful place you have ever been. It only takes a couple of minutes to bring your stress level down to the point where you can go on again.
    Try to be in the moment, so the past with your Dad is not with you all the time. I had a lot of history with my Mum and I can tell you that now she has gone and I know more about her life and what made her the way she was, makes it much easier to forgive her, as I did before she passed. Sending you love and peace – I hope this helps a little.

    Reply
    • It’s doubly hard when you are the ONLY ONE to do any caretaking (except for a few hours of hired help) and you have a difficult history with a parent. I read all the testimonials here from heartbroken adult children who are more than glad to take care of mom or dad, out of sheer love. What if mom or dad was abusive, demeaning, spiteful, degrading to you when you were growing up? Not enough for you to cut them off forever, but there you are, the only one still in town who is able to take over. The shopping, the finances, dealing with the scam artists, the housekeeping, the chauffeuring around, shovelling the driveway, mowing the lawn – all to the detriment of your own family if any. And all her church friends drop in for half hour visits full of concern and tell you what a wonderful son or daughter you are to dear old Mimsy or Fred! Like you have a choice? It’s doubly hard tending to your childhood abuser, you just have to grow up, suck it up, and do what you can.

      Reply
  31. I don’t even know how much longer I can do this. My own health & sanity is suffering now. And I just have too much emotional pain from thd past with My Dad, that I CAN’T GET OVER! And now, when we have a big catastrophe, I’M THE ONE LEFT TO DEAL WITH IT… ALONE! Yet I’m struggling very hard to keep myself out of a catastrophic situation, & really can’t deal with this alone anymore! I’m TOO YOUNG!!! My Dad is only 52. He suffered a TBI & will never be the same, plus his life wasn’t exactly pulled together BEFORE all this!

    Reply

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