Hello. This is kind of long, but I could use some advice or helpful tips.
To begin with a backstory, almost two years ago my parent was placed on hospice because they chose to not undergo treatment for colorectal cancer. Since then, because of circumstances outside of my control (i.e. siblings/ family), I was elected the person to be their full-time caregiver.
For the first 6 or 7 months it was alright; they were not as declined and they enjoyed life and were active. That started to slowly change and they became housebound and were not able to be left alone. I had no support at all and only had a sibling watching him maybe once every 2 to 3 weeks for five hours so I could run errands.
This just became too much — the sleep deprivation, isolation, the quiet because all my loved one does is sleep, etc., etc. I found myself going crazy, losing touch with reality, time, and everything and everyone around me. For nine months after they declined, I have lived almost imprisoned in my house taking care of my loved one.
Long story short, I have made the decision with my siblings to place them in a nursing home facility. In one month I will be, for the first time in almost 16 months, no longer completely 100% responsible for providing care for my loved one on my own.
My question is, how do I heal from all of this? How do I go on with life, and live? I thought my caregiving journey would end with the passing of my parent, not them going to a nursing home. I feel guilt and sadness but also relief and honestly I'm not sure how to live normally anymore. I feel lost and not sure what pieces I need to pick up next.
I had dropped everything to take care of my parent. I plan on picking up where I left off and going back to school/work. Yet, I still feel so exhausted and overwhelmed by this entire experience and like don't know how to live life and function outside my house.
What was your experience? How did you recover from caregiving for such a long time?
I don’t know that I have the kind of advice you’re looking for, because my experience was different. I took care of my husband for a long time too—seven years—and even during the most intense period, I didn’t burn out the way you describe. I didn’t get much sleep, but somehow I didn’t mind the caregiving itself, so I can’t say I’ve been exactly where you are now.
But I can say this: what you did for your parent was an act of love and devotion, and it came at a very high cost. The feelings you’re having—relief, guilt, sadness, exhaustion—they’re all deeply human. There’s no one right way to heal from something like this, and you don’t have to figure it all out at once. Even knowing that your parent is safe in a facility now, it may take time for your nervous system, your body, and your mind to feel safe again too.
I wonder if talking to someone—a counselor, a therapist, might help you process what you’ve been through and find a gentler way back to yourself. You’ve had to put your own needs aside for so long, it’s no surprise that it feels strange now to focus on them again.
Please be kind to yourself. You’ve carried so much for so long. It’s okay to feel lost right now. Healing is allowed to take time.
Wishing you peace and rest.
As to guilt, it is entirely inappropriate. Guilt indicates there is causation out of malice and a refusal to repair what to created.
None of this is your fault, created by you, or of your making. This is simply life.
So guilt is out of the question. I think the word you should use is "Grief", the "other G-word". This is hard to see happen.
I would suggest a good one-on-one cognitive therapist to help you understand the roadblocks unique to you in moving forward with your life. And I wish you the best of luck.
When he returned home, he was ready to change aspects of his life that needed changing. One of the people he'd reconnected with was me. End of story? An amazingly happy ending....
Go do something new, no matter what it is. Anything to get the taste of caregiving out of your mouth. Godspeed!
YOU are NOT the same person you were 16 months ago.
You can not expect yourself to "pick up where you left off" because you are not there anymore. (I hope that makes sense)
Take some time to decompress.
Take time to reassess what is important to you now.
I know you are not going to simply drop everything and no longer do anything for your LO. they are in a Skilled Nursing facility getting care 24/7 that does not mean that you shut down and don't do anything again.
Being in any facility they still need an advocate, still need family, still need attention that staff can not provide. While you are not a direct caregiver you are a care manager, advocate, daughter (son), and your parent will need you. But this does give you time and space to reevaluate,.
Hang outside in sunshine
Eat healthy, protein, fresh fruits and vegetables, etc
Plenty of water
Very light exercise, don't overdue
Schedule
haircuts
dental visit
routine medical appmts for you--mammography depending on your sex, colonoscopy etc
Once your loved one moves
Set boundaries for yourself. Visit your loved one once or twice a week.
I would see a counsellor to help with the transition, ideally one who has worked with caregivers/former caregivers.
It’s also wise to avoid making life-altering decisions too quickly.
This group has also been very affirming of my experience. It also feels good to help others here who need support.
I have been out of the primary caregiving role for 6 months now (after dealing with my mother for 10 years). For now, it’s enough just to have my life back.
I wish you safe passage.
i want to share what I went through with my late mother. In 2012, I lost my job of twenty-five years, then two days later, my mother got ill from taking Coumadin. She recovered from stopping the meds.
Two weeks later, Mom suffered a back injury from a fall from lack of judgement after she had stopped the blood thinner and suffered mini-strokes. After she suffered several fall injuries at home, she could not return home so was placed into asst living.
I needed to work, but even with her in assisted living in a care home she still required my POA decisions and stopped my nice temporary job.
Once she was moved from CA to OR, I was free to seek work but by then I got so mad from getting burned out that I sought counseling to get over the mental damage Mom did to me besides force me into caregiving her my family eventually rescued me from my duties. I had lost over10 years of my life with Mom because of stress.
After I did return to work in 2015, I lost another job from COVID-19 after four years of that job. I still had over one year to work to retire but found two more jobs and much unemployment benefits to make it
Over four years after that sorting and hanging items job, I had learned that mgmt. had decided to get rid of me because they decided that I was too slow with my sorting position, so that it was like discharging me. Sometimes I had complained from the pressure between speed and safety.
I now do have some volunteer work to enjoy and some meetup at my local gym.
Today, most of my friends I enjoyed are gone and some have died. I am still recovering from Mom’s mental damage with more counseling. Without local family or single friends for myself, I often become very angry, so forthcoming prayers for me.
You need time, support and nurturing/self care. You sound so dejected and burnt out which is understandable. And I will add here that if by any chance, your relationship (either in childhood or adulthood) was complicated by any trauma, addictive behavior, mental illness, etc your own recovery will likely be somewhat complicated. That is another reason why I agree that therapy would be ideal for you asap. Not saying this will or won't happen but your therapist or primary care person might even offer to prescribe an antidepressant just to help you through the initial crisis. Or a grief support group. Please be gentle with yourself...
Give yourself grace because this is harder than anyone who hasn’t done it realizes.
In my case, I started to be very emotional and had a short fuse for everyone around me. I didn’t lash out at my mother but my husband got some abuse. He was an angel about it but I realized it and that hurts.
If there is a way to do it, take some time to do nothing, go to the beach or the lake or wherever you “commune” so you can just let go.
Set no expectations for yourself except to make progress, you need ample time to heal.
I wish it would work to tell you not to feel guilty because you have gone above and beyond. Very few people can do this job and none can with no relief whatsoever (except you). You deserve a medal for that!!
For now just get used to getting up in the morning and taking care of yourself. Are you managing to wash up and get dressed and eat properly? That's a great start.
You may feel some guilt at not being able to keep your parent at home, but congratulate yourself for having made the wisest decision for both of you.
You don't need to add school and work and a full social life back all at once. Being the sole caretaker of someone on Hospice is more than a full time job. When Hospice stepped in to supervise my husband's care, their words to me were, "You cannot do this alone." But, like many of you, doing it alone was my only option.
Do not force yourself to resume all former "normal" activities. Take whatever time you need to be ready for them.