If u r the empathetic person within the dynamics of your family especially if u have siblings that u notice r selfish growing up...it only gets worse. Do NOT UNDER any circumstances do more then any of them. If they move to another state then u move to another state. If they lift a dish u lift a dish. If they only visit on holidays u only visit your parents on holidays. If u r single get a pretend family.
Listen to Clark Howard, and if your own parent has not purchased Long Term Care by the time they are 60 years old: Purchase it for him/her, yes, out of your own pocket.
You will join a new caste: the invisible army of caregivers and do the hardest job our society has to offer, without any compensation or appreciation. Most people do not like to be reminded of frailty, decline and death, and look the other way while ignoring or minimizing your experience.
You will find out that is up to you ALONE to value who you are and what you are doing. You will lose friendships, siblings and your social life. These were the most lonely years of my existence. After my LOs passed away I find re-adapting to "normal life" is a huge challenge.
That it changes you. Your a different person now. Now that I'm in this forum and have so much better information, and support, I can see how it's changed me, but now I am focusing on the positive changes.
I think in the long run its made me a better person
Understand that it never gets better. It will consume more of your time and will affect your life more and your mental well being. I took care of my mother when I was in my teens until she died. Took care of dad in my 30's until he passed. It eats you inside and robs you of your personal life. There should be some kind of course people should take before assuming care giver, if you can choose how to deal with your loved one. One thing people don't realize there may come a time where you become resentful of the one you are caring for. This will affect your loved one negatively AND will affect you even more and your ability to provide the care they need. In the facility I am in many of the residents came when their families became exhausted from care giving. I have talked to many family members on visiting days and many say they wish they sent them to AL or nursing home sooner.
You'll need to set boundaries with the person you're caring for, and also with non-primary "co-caregivers"/back seat drivers. More than OK to step back if you're not appreciated and respected.
Have a good contractor. Have a good appliance repair guy. Have a good yard guy. Have a good seasonal yard girl (flowers/shrubs). Make sure everyone makes you laugh.
When it comes to dementia of any kind, Google sucks, ya gotta look alot deeper than just a simple one page article on any form of dementia. There is so much more involved, that I never new.
-PREP BEFORE you get deeply ENTRENCHED Look at Options, Best/Worst case scenarios, Other People's Experiences. Because your parents May Not have Planned Ahead for any of the inevitable. What's the WORST you've seen your parents act? That (and worse), may become the person you're caring for 24/7 daily. Although they might seem OK, Logic an Reason may no longer work with them. Keep all this in your back pocket for future reference.
PROTECT and Conserve Your Resources EARLY ON -Time, energy, finances etc. You may help your LO over a hurdle, but they'll Keep Declining and you'll become tapped out more and more. And Please Protect your Health! Caregiving CAN HURT YOU also
I'm playing a bit of Catch-up lol. But getting there now
I would say, don’t become a primary caregiver for a parent. I wouldn’t recommend it, even if you are fairly compensated. It’s too difficult for many reasons.
Don't ignore the signs of burnout and tell yourself you're "not giving enough." You are trying to do too much. I should have seen the signs over two years ago but I naively believed after six months things would be okay.
This will be longer than a sentence, my apologies. It all really started to go downhill after Mark had to get chemo, proton radiation, and then immunotherapy. He had a bad reaction to the RBC shot and he already had severe arthritis in one hip. He took about three major falls, one probably causing a hairline fracture. This caused osteonecrosis that literally ate most of his hip. He was bed bound for two months before he could get the surgery. I expected a longer recovery time as he had been bedbound and his hip surgery was more difficult than a more routine surgery, but it turned into a fiasco. He could not move that leg below the knee, period. This was with PT and over a month in rehab (more like two months). He became wheelchair bound but I was still able to help him do basic transfers to the bed (it was a Hoyer lift before that), into the chair, and into the car, so life went on.
Well, he then got a ulcer on his leg that refused to heal even seeing a wound care doctor three times a week. He had a wound vac on this, skin grafts, and was hospitalized for three weeks to fight off a bone infection. All this time I have a full-time job and then come home to take care of him. I have to help bathe him, transfer, and get him to a bedside commode.
Well, for the "too long/won't read the rest" I'd say "be aware of signs of caregiver burnout".
My mother's detertioration was very slooooooow and steady over time (she didn't just, example, have a stroke and go from 100 to zero...it was a long process over about a decade of her declining ability to take care of herself) but I was STILL majorly burned out by the time she fell and I had to start the nursing home/Medicaid process.
I didn't even know I was "caregiver", as strange as that sounds. First of all, I have no people skills, have NO INTEREST in nursing/childcare/caregiving and am childfree and purposely had no kids because I can't even stand taking care of myself most times. Secondly, her progressing problems were, again, so slow I just had no idea what was going on until it aaaaaall hit the fan.
I couldn't focus on my job, and I was late almost every day. I would fantasize about someone, ANYONE, helping me and taking her away for even a day from me after she became almost immobile. I couldn't have any mental space from her. She would criticize everything I did morning until night while just sitting there and I'd wonder how to get away as vacations and days off from my job literally didn't help. I was needlessly irritable inside and anything would set me off.
Watch for those signs and try to help yourself somehow if you notice them creeping up.
Even though you think you come from a big “family”, don’t expect anyone to be there for your LO or yourself. Know you are going to feel more alone than ever. And you will miss out on everything you use to do, even going grocery shopping will become rushed. You will hear every excuse under the sun. When your LO passes know your CG days are still not over. You will be responsible for your LO possessions and money. The ones that were no where to be found will suddenly want to be in control. You will still feel alone.
that is such a true saying. Especially the last year, I feel I have put my own life and health on the backburner , and focused all my attention on my husband who is stage 3 alzhemiers. 2024 will mean some tough decisions re putting my husband into permanent care, and although I know in my heart that it is the right thing to do for both of us, gosh it's going to be hard emotionally! we are both only 69yrs, been married 51yrs, and he has been my soulmate. But the past 3 years have been so lonely for me (friends and family can't replace the intimacy, conversations of shared memories etc with my husband) and I feel I 'lost him' a long time ago. This is such a cruel situation for both of us. Sorry, New Year's eve and just put him to bed and feel so alone.
Caregiving is going to last much longer than I think . Try to Insist on LO’s allowing hired help to come in the home to take some of the burden off , or start refusing to do as much so they see they need help . After awhile it can become a big burden trying to juggle everything without more help .
Take care of yourself first, cause you’re no good to mom, hubby & child if you don’t.
You’ll be a caretaker to mom solo. Your older siblings lied!! 🤣 Reach out for resources & contact agencies early!
What I would definitely tell myself is don't take it home! Leave the problems there and behind you. Don't bring it home to your family
Not only are we dealing with the loneliness of caregiving,
I feel like, post covid and political division has enhanced the the caregivers loneliness
You will find out that is up to you ALONE to value who you are and what you are doing. You will lose friendships, siblings and your social life. These were the most lonely years of my existence. After my LOs passed away I find re-adapting to "normal life" is a huge challenge.
I thank the universe for this forum!
I think in the long run its made me a better person
Definitely much more knowledgeable
My father quit when my mother died, and now he thinks I made up everything he did.
You don't owe your parents, our society and culture owes them a viable chance to continue living gracefully if they can.
Research in advance!
-PREP BEFORE you get deeply ENTRENCHED
Look at Options, Best/Worst case scenarios, Other People's Experiences. Because your parents May Not have Planned Ahead for any of the inevitable. What's the WORST you've seen your parents act? That (and worse), may become the person you're caring for 24/7 daily. Although they might seem OK, Logic an Reason may no longer work with them. Keep all this in your back pocket for future reference.
PROTECT and Conserve Your Resources EARLY ON
-Time, energy, finances etc. You may help your LO over a hurdle, but they'll Keep Declining and you'll become tapped out more and more. And Please Protect your Health! Caregiving CAN HURT YOU also
I'm playing a bit of Catch-up lol. But getting there now
This will be longer than a sentence, my apologies. It all really started to go downhill after Mark had to get chemo, proton radiation, and then immunotherapy. He had a bad reaction to the RBC shot and he already had severe arthritis in one hip. He took about three major falls, one probably causing a hairline fracture. This caused osteonecrosis that literally ate most of his hip. He was bed bound for two months before he could get the surgery. I expected a longer recovery time as he had been bedbound and his hip surgery was more difficult than a more routine surgery, but it turned into a fiasco. He could not move that leg below the knee, period. This was with PT and over a month in rehab (more like two months). He became wheelchair bound but I was still able to help him do basic transfers to the bed (it was a Hoyer lift before that), into the chair, and into the car, so life went on.
Well, he then got a ulcer on his leg that refused to heal even seeing a wound care doctor three times a week. He had a wound vac on this, skin grafts, and was hospitalized for three weeks to fight off a bone infection. All this time I have a full-time job and then come home to take care of him. I have to help bathe him, transfer, and get him to a bedside commode.
My mother's detertioration was very slooooooow and steady over time (she didn't just, example, have a stroke and go from 100 to zero...it was a long process over about a decade of her declining ability to take care of herself) but I was STILL majorly burned out by the time she fell and I had to start the nursing home/Medicaid process.
I didn't even know I was "caregiver", as strange as that sounds. First of all, I have no people skills, have NO INTEREST in nursing/childcare/caregiving and am childfree and purposely had no kids because I can't even stand taking care of myself most times. Secondly, her progressing problems were, again, so slow I just had no idea what was going on until it aaaaaall hit the fan.
I couldn't focus on my job, and I was late almost every day. I would fantasize about someone, ANYONE, helping me and taking her away for even a day from me after she became almost immobile. I couldn't have any mental space from her. She would criticize everything I did morning until night while just sitting there and I'd wonder how to get away as vacations and days off from my job literally didn't help. I was needlessly irritable inside and anything would set me off.
Watch for those signs and try to help yourself somehow if you notice them creeping up.
🥰
HAPPY NEW YEAR, to all!
A fresh start!!
Dust off the past!! Soon it’s 2024!!
Everything is possible. You’re alive.
Be happy to be alive.
Realize there comes a point where you can do nothing more. Pay attention when that point arrives.
Live. You are not helping anyone if you don't live your life; it only causes frustration, depression, drama with others and poor health