It's been months. You're feeling isolated - alone. Financially, your income has dropped substantially and you're scrambling to pay bills, but it's all a haze. You're primary focus is your loved one. You can't seem to break through the red tape to take advantage of help that you qualify for, and the one you've been focused on providing care for is deteriorating. You know it's approaching the end.
From the introduction of Her Final Year: A Care-Giving Memoir:
Every week, sometimes every day, little changes to daily habits provided further course corrections as each family charted a new path into unfamiliar territory. At some point, care giving began to have more of an impact in terms of time and availability requirements; this led to, and was exacerbated by, changes in income -- which also had repercussions into areas like the personal health and health insurance options of the caregivers, in addition to altering options that normally required a small financial outlay. In short, everything had an effect – the small changes compounded, built one upon the other in a spiral of change and isolation.
You feel as though things are spiraling out of control, that the issues and problems are becoming exponentially more treacherous, yet the doctors, nurses, health aides & advisors - those you could afford to see, or which your insurance covered, or which you were able to qualify for under some assistance package - have all told you you've done a great job. You can't see it. You can't feel it.
You're haggard. Stressed. Exhausted. And you feel like a failure.
You're not.
CareGiving Kos is a community diary series posted generally on Sunday morning and Wednesday evening by volunteer diarists. This group & series is for those who are now (or have been) in the role of being a care-giver for a loved one. We want this space to be supportive and free of squabbles. Our only rule is to be kind to yourself and others who are going through a very difficult time. Please respect the concept of this group: No Politics Here.†
† By "no politics" we don't mean "avoid politics completely" - it's too relevant, at times, to portions of the topics discussed. But keep any references to politics focused and within the context of the caregiving topic. Avoid flames, flaming, flame-wars and dragging the discussion off-topic. Thank you.
Nobody - except you, perhaps - expects you to be a saint. It may be that in the eyes of your loved one, you are one. Or, perhaps, the disease or condition that is claiming the life of your loved one has twisted his or her perceptions more darkly - you are the exact opposite: a hell-spawned demon sent to cause them unending suffering. Some diseases, some illnesses, can do that.
But if you care, and if you are trying your best, chances are you're doing fine. You're human. You'll make mistakes. You'll have moments of clarity amid seas of chaos, and you'll have bouts of doubt that haunt you from day to day - sometimes, minute to minute.
Don't stop caring. Don't feel that caring isn't enough. But don't add to the burden - forgive yourself & let it go. Caregiver guilt can kill or disable you; it can impede your capacity to care for yourself and for your loved one.
And, although you are likely ~not~ taking proper care of yourself, sacrificing your own needs in order to focus on the needs of your loved one, you need to do better at ensuring that you don't kill yourself or have a heart attack due to the stress.
Caregivers need respite; it's not a crime. It's not a weakness. It's a requirement. If you're to survive to help your loved one, and beyond, then you have to take care of yourself.
The title of this piece uses a quote I've seen in diaries and as tag-lines. It's attributed to Meteor Blades - "Don't tell me what you believe; show me what you do and I'll tell you what you believe." I think it applies here, because - even if you feel like you're drowning, like you're a failure, you keep going. You keep caring. You keep doing your best.
If you truly believed you'd failed, you'd have quit long ago.
You are not a failure.
You may not be a saint, but you're certainly not a failure.
Do yourself a favor and seek respite - find a way to reach out to get someone to help, to give you a chance to take a walk, to get some uninterrupted sleep, to go out among people for a few hours. A chance to unwind, to relax.
Below, in comments, please share what avenues you've found helpful whenever you felt like you'd reached the end of your rope: what options did you find, or are you in need of options so that you can recharge?
Let's put together what thoughts we can, and provide as many useful suggestions as we can think of...there are some folks for whom none of the ideas may be possible. What can we offer them to help them, even a little?
Both Shadan7 and I found some respite in our online sharing among people in the Daily Kos community.
With the expansion of technology, what other options may be becoming available for those who are going the caregiving route solo?
Your thoughts are appreciated, and welcome.
Thank you. Namaste.