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LORD Jesus - SylviaT is having difficulty with the job of caregiving. She is tired and needs rest. Her husband is very different from the person he was when they married. She needs to see glimpses of the man he used to be. She is frustrated. Help her to have Your perspective on her situation. Bring her willing family members, good friends, members of the family of faith, and paid help to come along side of her and her husband and to help. Help SylviaT to get good sleep every night, good meals at a reasonable pace every day, "time off" to care for her own health, and "time off" to enjoy the life You gave her. Help her to only say words that are helpful to others as You fill her heart with Your love. In Christ Jesus' name. AMEN
SylviaT - now walk in the knowledge that God sees you, hears our prayers and provides all that you need in the life you now live. Do what you need to regain your perspective and some balance in your life. Hugs!
My eyes fell on this book on my bookshelf the other day: The Better End -- Surviving (and Dying) on Your Own Terms in Today's Modern Medical World by Dan Morhaim (adjunct professor in the Dept. of Health Policy and Management at Johns Hopkins).
I took it off the shelf and started reading it. If I haven't been seeing first hand (my wife and SIL are caregivers) the awful demise of my MIL with end stage dementia the book might have sat there until it was too late to do any advance planning.
“You turn mourning to dancing
You give beauty for ashes
You turn shame into glory
You're the only one who can!
You turn graves into garden
You turn bones into armies
You turn seas into highways
You're the ONLY one who can!”
Please know that you are not alone in your struggle - thousands of us understand and are rooting for you and each other!
I just know who I can and can't depend on.
I now take care of my husband. A wonderful man . We've been together for 43 years. The pain in my heart to watch he regress in health and mind is devistating to watch. He has Parkinson disease, prostrate cancer remission for three years now. Also lung damage due to blood clots.
I also at the same time cared for both my parents. Both whom have passed on three weeks apart. I did the three of them together for quite a few years. I
too, was overwhelmed at it all. No sleep, constant doctor visits, medicines , hardly any sleep since they all had different sleep schedules. Diaper changes, feedings etc.
I decided that for me a nursing home was not a place I wanted them to go. So when I made that decision I also decided that I would not allow myself to become angry and I let everything roll off my back. I didn't have enough time in a day to argue, fight, try to reason with them. When I was able to sleep I would push out the bad and only think of the good that happened that day.
For me it was the best decision in my life . I was able to care for each one of them.
To have that end of life experience with my parents brought us so much closer than we were ever. Taught me the true meaning of family. And most of all for me I got to show my parents the love that they showed Me when they brought me into
this world..priceless time memories I will never forget.
We love, laughed, cried and talked until the very end.
Im thankful I still have my husband. He's declining but I wI'll be there until god says
Its his time.
I have no regrets regrets. I would do it all again without thinking twice.
I do not hate my husband but I intensely dislike being a caregiver at this late stage.
Earlier I was filled with sense of mission to make him better. That was ten or eleven years ago. Today we are well into several health issues, one of which is Parkinson's. My mission only succeeded in adding more and more medications and appointments to our routine. He never, ever has felt better.
This morning he got up at 5:30, went to the stove, put a pan on high heat, and burnt eggs. I woke up smelling burnt and nearly had a heart attack. Now we seem to be in a new chapter, the chapter of "I can't leave him alone at all."
Just recently I hired help for three hours a day. That has made a huge difference in my attitude. It is why I can be typing this note.
Get help, get sleep, get going! I wish I had not waited so long!
Is there a friend or family member that can give you a vacation? Is there a Social Worker in your town you can call that can set you up with options in care? Perhaps there is a facility you can use.
Look for a local support group. Call your local Senior center.
Call a local church. You need help now.
You need to put yourself in their shoes.
Sounds like you are burnt out and you need a break.
It would be good for both of you.
A caregiver should be loving and kind.
First, sounds like you need some help.
What ever amount of time you are working cut it down.
If you're working a 6 days cut it to 5.
If you're working a 12 hr shift work 8 hrs.
If the above options don't work then you should take some time off like a week vacation and see if things aren't better once you return.
In the meantime, make sure you yourself are getting enough sleep.
Tare 10 minute brakes during your shift and go outside and get some fresh air and sunshine.
Play soft nature music as a calming effect
You should also do something for yourself once a week minimum like go get a Massage, a Manicure or Pedicure.
Prayers
Don’t assume, as I once did, that because you’re a loving relative you can provide the best care possible.
In my case, and my mother’s, that was NOT true.
I am a man whose mother has and is putting him through hell. I gave up a good career only to be abused for my reward of being a good son.
I do all the work for no pay and get crapped on for a thank you.
The other sibling and his daughter and her family do nothing but empty mommies bank every month.
There comes a time when you say enough. From now on if she wants anything done she can either get them to do it or pay me.
If you want to make comparisons, from my observation both with other care givers I know and from volunteering in seniors homes before becoming mommies slave the majority of the abusers are narcissistic mothers from hell.
As for you sister, perhaps you need a rest from your duties. Besides, we all get tired once and a while.
You are in my morning prayers.
Thanks for sharing 😍
I got on to a thread where this woman was literally suicidal, she was so depressed from caregiving and having no life. I realized there were others like me and that I was not a terrible daughter and wife. I wasn't suicidal but did realize I was experiencing compassion fatigue as well as physical fatigue and depression. I set the bar high for myself and kicked myself when I too, got snippy, snappy, crabby and shrill with them.
I had it in my head , well, it was put there with the assistance of many family members that I should be enjoying this. That I should be grateful. Happy even.
Did not know why my life did not look like all the glossy caregiving pamplets and commericials. I recall one commerical of a lovely elderly woman standing on the steps of her beautiful home with two beaming attractive adult children. The guilt line was something like "dad made us promise not to ever put mom in a home".
Yeesh.
So much is thrown at us, telling us how we SHOULD feel, and if you don't the guilt and self criticism sets in, which leads to depression...and so on.
I found so much help, hope and acceptance here. It's my sane place when my life gets too intense. Welcome and I hope you find support here as well.
I tell men and women that make stupid comments like she is your mother so you have to take care of her or she is a good ol girl that I am more than willing to have them come in and take care of her for a month so I can have some time off for the first time in four years. It shuts them up fast.
If caregiving continues for an extensive period of time, they will most likely grow to absolutely hate it.
Plus, how many people secretly hate it but for whatever reason they won’t openly admit that they hate it?
Don’t ever doubt that burn out is real.
People who don’t think that caregiving is hard, have probably never done any caregiving in their lives.
If at all possible, I recommend involving others to help out with care. I have a caregiver that helps me with care; he also gives us both companionship and joy!
*To add: it is important to separate the disease from the person... someone mentioned this in a post; it is helpful for sure...thank you.