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I would add that I think the caregiving journey (which is what it is in many ways) causes, or allows one to explore him/herself, values, self worth, goals in life, and often new decisions and future plans for the post-caregiving years. It can create or inspire a new assessment in life.
Perhaps the most challenge is creating mental space between current times and the future, in an attempt to achieve a balance (and it isn't easy though).
If I had to name my challenge, I would take caregiving over being disabled and unable to heal or even care for myself, or to be physically disabled in an accident or similar event with no hope of ever living a normal life again. These things do not pass, caregiving does.
When I worked in Detroit and rode the bus, I saw 2 regular passengers, one who was blind and one who apparently had some type of palsy. I marveled at their perseverance, especially the blind woman who worked in one of the not very safe areas in Detroit. She faced so many challenges, including the major one of safety. I don't think I could have handled that. Caregiving seems like a piece of cake compared to physical disabilities that are lifelong.
That's not to diminish the caregiving challenges, which certainly are many, and often debilitating. And I won't deny that at times it could only be described as overwhelming.
But I knew that the duration was limitated, and that it could be worse. If was a young migrant child torn from my parents, or a Kurd in Syria, those would be situations which I would definitely consider far worse than caregiving.
I would also like to add that I certainly don’t claim to know more than anyone else. You know, that I feel like I have more insight than anyone else because I don’t. There is nothing special about me. I am an ordinary person with flaws, just like all of us.
There are many incredible posters on this site that reached out to me privately when I was at my lowest point and it helped me to speak to them one on one, or just to have someone listen that had walked in my shoes.
Many on this forum helped that were primary caregivers like I was and just as many people who helped who weren’t primary caregivers in their homes like me that gave me excellent advice. I was really touched by everyone’s compassion. So be open to hear everyone’s point of view.
That is why I wanted you to know that I am happy to pay it forward with you because I truly have been in my own dark places at times. I still struggle.
Even in my dreams I struggle. For some of us who deal with nightmares, our subconscious minds go haywire while we are asleep when we need rest. Dreams are a bad trigger for me.
The majority of my life I have sought peace, harmony and balance. I had dysfunction in my family since I was young and I had no other frame of reference. It took years to work through that. Thank God I had the help of a wonderful husband, good friends and a therapist.
Life is a challenge and can indeed be a struggle as we try to find our way in this world. I am not making any comparisons or assuming anything. We all have our own set of circumstances and we all react individually to them.
When I was at my most fragile point I was extremely confused. It took me awhile to absorb the advice of others. Then even longer to process it. Once decisions are made though and actions are put into place the weight of the world is lifted. Perfect? Nah. There is no perfect. Being perfect isn’t the answer. Simply doing what we can at our own pace is enough, one step at the time.
Are you able to get out of the house for a while? Sometimes even the smallest outing can brighten your frame of mind. A manicure or a movie, a cuppa coffee with a friend you're close to. A shopping trip for a new luxury item for YOU. Just you. Nobody else. Sometimes we get lost in caring for others and neglect ourselves, even thinking it would be 'selfish' to take some time alone. It's not! It's REQUIRED for sanity purposes!!! So please, get out of the house and pamper yourself for a while every single day for the rest of the time your father remains alive.
His days are numbered, based on the fact that he's been in hospice care for a year. Your life will return once he passes, and you can move on with it. I know there will be grief and probably even a hole left afterward. But this mission of love you are on is NOT forever. And once it's done, please do not take on ANY more caregiving roles, okay?
If you really feel like suicide is your only way out, please do as Elaine1962 has suggested and call the hotline at 1-800-273-8255.
We all DO care; we're all struggling together here, trying our best to keep our loved ones safe & happy, and all failing to some degree. That's what we read here; that's what we learn every day. We all feel inadequate somehow. But we are doing our very best, and it IS enough! So take solace in knowing that you are a remarkable daughter and that your life is VERY, very valuable, even to us here on this AC board. If you go, a part of US goes with you.
We stand united, together. Be strong, my friend.
Plymouth62,
If you are nearing burnout, depressed, cannot find a way out, do contact a suicide hotline.
Do talk to your new caregiving friends here on AC, I see that you have a few.
Isolation can fill your mind with lies.
Even a believer will have thoughts or feel like it may be the only way out.
You are not alone in this. At some point, you may need professional help.
I recommend you NOT entertain those thoughts, quickly turning them over to
God (your god, in whomever you believe). Then make a phone call for help,
or, make an appearance at the nearest emergency room. Let time pass.
But do no self-harm. Do not act on those thoughts.
You can say: "I have had suicidal thoughts, but would never act on them".
I trust you when you say "not to alarm anyone".
And I trust you when you say "I am a believer".
Here is a paraphrase from the bible, from memory...
Now, to Him who is able
To keep you from stumbling
And to present you faultless and blameless
Before His Glorious Presence,
The only wise God, our Saviour
Be all majesty, glory, power and dominion
Both now and forever more.....amen.
"TO keep you from stumbling"
Please go speak to someone. When we are suffering life can become meaningless to us. Not a good place to be. No judgment. I get it. I feel your pain and I wish that I could erase it.
Don’t know if you are a believer but if you are, call on a higher power. Sometimes we can sink so low, we aren’t able to reach out in prayer. That’s okay too. Even the greatest of saints went through dry spells. So did the prophets. I will not judge you if you aren’t a believer. I respect you as a human being.
A long time ago I was in a very dark place. I called a person that I truly trusted. Was a big step for me to admit to this person that I could not pray.
I was so dry that I literally felt nothing. I was empty, running on fumes. She said something to me that really helped. She knew that I was a believer and it deeply hurt me to be numb to everything.
I’d like to share what she said in case you can relate. She said, “Your tears are your prayer right now. You don’t need words. Your suffering is your prayer.” She was referring to Psalms, God collecting our tears in a bottle. It’s a beautiful image.
See, I told her that I must have been a hypocrite because I couldn’t pray. She said to me, “You are far from a hypocrite. Your calling me shows me that you care. Your honesty shows me that you care. You will survive this pain.” She was right.
Just hearing her words helped me press on. Did it improve overnight? Of course not. But eventually I could feel again. Personally, I think going numb at times is sort of a protective barrier, until we learn to feel again. There are times we shut down. Happens to many of us.
I am glad to see that you expressed your feelings to us. That’s the first step. One step at the time. Even baby steps will do.
We care. Stay in touch. You are welcome to private message me, even if only to vent. I don’t have all the answers. No one does. But I will listen. If you ask for advice I will try to help. If you just need a person to listen, just say so and I won’t speak a word. There have been times that I wasn’t looking for an answer and only wanted to vent. You know what? As depressing as it is, not all problems have answers. We can only learn to change what we can and accept what we can’t. Not always easy to do. It takes time.
Share what you want to. I won’t pry. It’s a process. We don’t get over things. We work through them as best as possible.
Sending you a bazillion hugs! Please talk to someone. You are worth it. Call a hotline if you need to.
This leads me to think that people's whose sense of responsibility is so strongly (or even over?) developed that it ties them into caregiving long after the workload is reasonable or sustainable are unlikely to choose that way out.
I don't know if this is borne out by statistics either, but I wouldn't be at all surprised to learn that self-neglect (especially ignoring medical symptoms) and the period immediately after losing the cared-for person are the greater dangers.