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.
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.
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...
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.
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