As stated in my original post when I joined this forum, I'm the sole caregiver for my dad. I wanted to not only ask the above question but also give some advice. I have noticed a change in my personality since caregiving. I'm no longer excited about things that I love. Why? I believe it is because I'm basically burned out and because my father and I have always had a stressful relationship. Yesterday, I noticed just how burned out I was when I pulled out in front of a car that I did not see. there was almost an accident. At the time, I was in deep thought about something he had said to me that he should not have. I'm often preoccupied with his negative words. I just started a new job and I cannot concentrate. Here is some advice to those who are new to caregiving or considering being the sole caregiver: Do not do it alone. Get some help if you can. As for me, I'm an only child and I'm sure there are others in the forum who are as well. I have mentioned getting Home Health to help, but he does not want to do this.
- It is ok for your parent to go to Assisted Living. Years ago, I said I would never do that. But now I think differently. This forum as helped me to see that it is ok.
Always put your needs first. If you do not, you WILL become burned out and depressed. I do everything for my dad. But I have learned to put my needs first. He has me to do everything for him and I have no one to help me. I'm not saying I need help, but I recently thought about the fact that he has to do nothing while I'm doing his tasks and half doing my tasks.
These are just a few pieces of advice. I pray that all of us caregivers will find the peace we need for ourselves. We only have one life. We must try our best to live it!
Do you have a therapist?
If you do or not, please find a meditation app online and start meditating for 5-10 minutes each day. It will help you "let go" and regain some focus.
As for dad, not knowing if he has dementia and not knowing his actual capacity to do for himself, it's hard to know what to tell you. Have you read "Boundaries" by Townsend and Cloud?
You are demonstrably doing too much if you cannot drive or work with full concentration.
Have you gotten him a "needs assessment " through the Area Agency on Aging?
Let them tell you both what his needs are. Then help him to hire that help.
"He has me to do everything for him and I have no one to help me. I'm not saying I need help..." YES you do need help to stop this insanity of putting dad first and yourself last. And your dad needs to be in a facility where he can have ALL his needs met by trained staff and you can get your life back.
I'm putting things into practice now because almost having a wreck scared me. You are right.. I do need help.
Being a caregiver for me is no fun, it is drudgery, I do what I have to do for two people in homes, one in AL the other in MC. 4 years, heading into the 5th.
Maybe you are too involved with your fathers care, being in AL the basic day to day needs should be handled by the facilities staff.
Sending support your way!
God…
(((Hug)))
That’s tough. I help my mom: but so many problems.
I’m an only child, too.
“I recently thought about the fact that he has to do nothing while I'm doing his tasks and half doing my tasks.”
EXCELLENT POINT.
“there was almost an accident”
I get it. Be careful. Something similar happened to me. Not driving. But washing dishes. I dropped a plate (I was deep in thought). It shattered into a million pieces.
Recently, I took a break from helping my mom. “Miraculously”, my writer’s block disappeared (I was writing a simple, easy report and had writer’s block), Turns out it was completely connected to the stress of helping my mom.
“I'm no longer excited about things that I love.”
Don’t let this happen. I won’t let it happen to me either. Let’s get our personalities back.
You (me too) need to focus on your job, your life. You have a right to live. You (me too) need to get your life going, and find your passion again. So many people go through life without PASSION.
I found I shut down emotionally. I was the only one out of 3 children, the other 2 boys, that could care for Mom. I was the oldest, a girl and the one living in the same town. I had to shut down, I think, to get the job done. I find I sort of do this when I have something I have to do I don't want to do. If I don't, I cry out of frustration. I sort of put a wall up.
Your Dad...I had a good relationship with my Dad but he was not an easy man to live with. He was a lovable Curmudgeon. You either liked my Dad or u didn't. Mom waited on him hand and foot. He I would not have cared for, especially in my home. He would have gone into an AL or LTC. He would have loved it. He was a storyteller and he would have had a whole new audience.
What I learned is that one's parents do not just influence most children's lives: the parents influence is actually a profound effect that permeates and pervades every part of your being!
Even though my father is well cared for for in assisted living, and I'm so thankful for that, I have changed in many respects. I am in a new stage of life, too. It's been very difficult but everyday I'm trying to make it all go in a positive direction. This forum has helped.
Caregiving made that trait impossible and incredibly stressful. I felt like I had a fly swat trying to kill every fly on the planet. I could never get ahead of it. So, caregiving probably did change my personality but it also certainly made my natural tendencies more pronounced. I was an absolute wreck.
My caregiving has ended. I am still swatting flies but they are manageable.
It all depends how long it was, how much help, how you were treated, how stressful…
Some elderly people want to take you to the grave with them:
It’s not only that misery loves company:
Misery likes to see other people (especially their daughter) even more miserable than they are.
I would say that the majority of people struggle, each in their own way, while being a caregiver.
Don’t hesitate to speak with a therapist about your emotions. I am glad that I reached out to this forum, an in person support group for caregivers and my therapist.
Invest enough time in therapy to really make a difference. We are able to learn about ourselves and others in therapy. Start setting goals for yourself and make a commitment to follow through.
Wishing you peace during these challenging times.
At first I thought you’re addressing facebook. And I thought, how weird you’re talking to facebook.
:)
Hope you’re well Need, and Way, and everyone on the forum. We’ve all had/have a tough time.
Let’s not let it destroy us. For those who need to (like me), we can still turn our lives around. It’s never too late.
My anxiety hit the moon. My mom has always been a controlling and demanding person and it magnified beyond anything I'd imagined. I walked on eggshells while she was bedridden, her yelling screaming demanding, guilt FOG, all of it. I sought therapy.
I was able to turn it around by setting boundaries and keeping them. I worked it through with my therapist at first, it was going to be worse before it got better and oh man was it. Then once mom knew I couldn't be yelled, demanded, guilted, etc., she became a much different person too. She doesn't like to hear, "Not today," when she asks if I can come clean out the toaster for her - yes that happened once, but she wound up doing it. She doesn't like to hear, "No," when she asks if I'll rearrange her kitchen cabinets - they're fine as is. The minute I rearrange and change everything she'll forget where it is, so it's about the control and "What can Grip do for me today?"
I became much stronger. I don't like the circumstances that brought it on, but I did. She has always been the one who guilted and demanded and threw tantrums when I was younger. Now my response is little more than, "Aah try something new." She's also a lot more civil, and in many ways friendlier. She has a caregiving team at home that comes in every other day and they don't let her get away with anything either, but of course they don't have the emotional component. She's finally realized that when she practices gratitude for things I/we do, it actually works better.
Hard to go through to get there, but I'm there. I wish us all strength, and luck.
I totally get what you’re saying.
Caregiving has changed me profoundly. I miss the person I was. I’m not much fun to be around these days.
If only there would be an easy fix to this. I think some people only finally feel free of these feelings after the LO dies. Then finally they feel free to live their lives fully.
Now, my FIL is in assisted living and I don't care that he doesn't like it. When my MIL got sick (neurodegenerative illness), he fell apart and often used her illness to gain pity for himself and get his way. He does not want anyone to know his ugly truths. And I wish that MIL was the one still alive because she was such an amazing human being.
This forum helped me figure out how to get my life back on track. My FIL is safe, well cared for, and has access to activities. He is more than fine. Now, I'm much more focused on being a thoughtful, loving woman who engages in mindful self-care. I now spend my energy and time on people other than my FIL and his vapid side of the family who are energy vampires. Life is for the living.
Imagine if you will……being a loving wife, who has a lot of activities in her busy 75 year old calendar, places, people, friends, of course chores, but also new things, interests, people , extended family, hobbies, and the loving responsibilities/connection of going to see your husband in care. You deserve a life, the “twilight” years to be your best you can be, whilst you still have health. it doesn’t mean you love him less, it means you will end your years in a happy frame of mind! And please know that I say this because I understand completely about the love and duty aspects ( I am 63, have a fulfilment demanding job and simultaneously care for-my 93 year old Dad (deaf but refuses hearing aid, taps on, recurring ??s, diapers, AND my younger husband , only 53 but extreme anxiety and trauma issues, and if not made accountable, would “let me “ do everything !
I have a lot of beautiful friends around me, they are unanimous! RE-INVEST IN YOURSELF TO FIND HAPPINESS- we only get 1 life…🥰
- to try to shut her off in my mind. Not easy, but I have to distract myself when I start playing those unpleasant conversations on endless loop in my head.
- I can control very little of her situation. I try to let it be; to let go of what I cannot control.
- stop giving her power over my emotions. She has dementia. She has no power over me.
- her life is not my life. It is hers. I can help, but I cannot fix it.
The important thing for me is keeping my boundaries intact. I cannot help her if I am also sucked in to the mental chaos that dementia has placed in her life. It is a cruel disease and a health crisis that becomes more prevalent as medical advances find ways to prolong life beyond all reason. (My opinion.)
you and I are on the same page. Good for you for caring for yourself first.
At first it seemed insurmountable. I couldn’t stand to think that I would need to change her diapers several times a day, wash her, clip her toenails and all that stuff she used to do for herself. Not to mention fixing all her meals and running her house and finances, in addition to running my own business. I considered putting her in long-term care of some sort but I stuck it out for a while and then I realized that she was thriving under my care.
Now it wasn’t just me: I have the support of my partner who lives here too and the home hospice care that my mom is now getting. Hospice is all about making Mom comfortable and making her life as good as it can be in the time she has left. She’s off most of her meds now, and maybe that’s part of the reason for her improvement. Support is everything, and I think if I was doing this all alone, well, I probably couldn’t do it. My partner, hospice home care and this forum all make it doable for me.
I’ve learned so much and I feel a competence and strength that I didn’t used to feel in myself. I’ve figured out how best to handle my mom’s sometimes crazy-seeming behavior and how to sooth her and calm her. I actually feel like I love her more than I did, or at least in a different way. It’s almost a mothering of her, which seems odd since I’m the daughter but there it is.
I’m sure things will change as time goes on, but I feel I can handle whatever comes, and I’ll never regret that I chose to take care of her.
You learned positive things from helping your mom, sacrificing years of your life — in a sense you don’t have a choice but to try to find positive lessons from all that. Having a positive attitude.
You’re very kind. But I warn you: don’t sacrifice yourself. You weren’t born just to be a helper, and not have your own ambitions and dreams in life. It happens to so many girls.
Expect a lot from life.
(((Hug)))
But we are big girls now ! And I agree 100 % the most important thing is you (and me too!) so for all of the daughters out there caring for their Dad let’s cheer on each other. ITS GOING TO BE OKAY 👍
Sometimes it’s not OK, and the caregiving/helping ruins the caregiver/helper.
Don’t let that happen to you. It happened to so many women.
being a caregiver has taken its toll on me. Now i must get more help and my kids are scared as much for me as my husband with parkinsons. Hes up and down- some days ok but always an accident waiting to happen. Hes a fall risk
and will not go to assisted living . Maybe i should.
if i have learned anything its that this kind of caregiving requires a team. Please pray we find the right solution
First of all, sending love & support as I can feel and relate to your burnout.
Are you now pursuing AL? My first thought was that you should absolutely do this aggressively, otherwise you're going to be locked into this for a long time.
In the meantime - hire bi-weekly cleaners, grocery and maybe even prepared food delivery, and either outsource the laundry or have someone come in a few times a week to help with laundry/meal-prep/running errands. Heck, maybe even taking to MD appointments.
The second option costs money - your Dad should pay for these services since he can't do them himself and YOU can no longer sustain this level of sacrifice.
You are not just an all-you-can-eat buffet and you're not free forever! I say this to you as much as I'm saying it to myself. This is simply too much!
You need to focus on your new job & getting some rest. If you do option 2, you'll still be doing the management/planning and it will be a heavy responsibility. If he's in AL, you won't have to worry about meals, cleaning, laundry, socialization - think about it - he truly needs to move to the next phase of his life vs. draining the life out of you forever and always.
If you're unsure about paying for AL, etc - it would be well worth it to get a consult with an experienced elder law attorney who can guide you through AL financial options.
Please do not continue this way, sending love. XO
He would definitely benefits from extra help or AL but he wants neither. I understand that he wants to stay in his home but I can not be a 24/7 caregiver. In his mind, I'm supposed to do it all. I'm definitely having a hard time focusing on work and I can not let that happen. Also, I'm exhausted. I told him once that I was tired and he said " I don't know what you are tired from."
Even though we placed my mom in a SNF in March, she functions as a quadriplegic and I'm in there every day to feed dinner and help with personal care stuff that they don't handle. My father goes for hours during the day and lunch.
For those who have LO's at home, that is the worst and I've been there and the level of desperation I felt was excruciating.
Having her in a SNF is much better, but I still feel the heavy responsibility of her life somehow. I thought that the SNF would make me feel much lighter, but it really doesn't. She cannot do a single thing for herself. The nursing home is fantastic, but they only handle the basic needs, it's like no frills care. I feel like my mom actually needs private-pay aid to do all the stuff she really wants such as constant massage, scratching her itches that she can't do herself, haircare, shaving, FLOSSING, basically personal and self-care. I do this for her. My father refuses, my brother sits in blissful ignorance when he visits. My father is not going to pay for a personal care aid, and I've already paid dearly with my life as it is.
So even though she's in a home, she still needs a lot of attention. She doesn't really appreciate what I do, she feels entitled to it. I feel that my life has no purpose other than to serve other people. I am so out of touch with what I might want for myself. If someone could give me a time-frame of how long she would be here, I think I could better assess and make plans for my time investment and how I plan to handle it. But that's the WONDERFUL mystery of life! My 76-yo mother's roommate is 104-yo. We just don't know.
Life expectancy is so much longer these days. I've already told God I don't want to live a really long life, any older car breaks down and so does the human body.
God bless all the caregivers!
76…
Caregiving could go on for many years. I hope you can do something to reclaim your life already now.
”my brother sits in blissful ignorance when he visits.”
I want to beat him up.
“My father is not going to pay for a personal care aid”
That’s really bad of him.
Using you. Exploiting your free labor. Unacceptable that he won’t hire help.
“I've already paid dearly with my life as it is.”
Right.
“She doesn't really appreciate what I do, she feels entitled to it.”
I don’t like it when elderly parents feel entitled.
And why you? Why doesn’t your mom harass her son to help? “Interesting” she only wants to sacrifice your life, the daughter. Why does she protect her son’s life from this hard work?
(These aren’t real questions. They’re rhetorical questions.)
Be aware this can go on for many years. Your mom is only 76.
I wish you to reclaim your life. YOU own your life.