Have you noticed a change in yourself since being a caregiver?

FB, I'm so sorry to read this post.

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.

When are you going to put these things into practice Faithful Beauty? Almost having an accident because you were thinking about something terrible your dad said to you should be your wake up call.

"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.

Good post, I understand. Me, I have become impatient, waiting for this to be all over with.

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!

Your advice is excellent. Let’s both try to put it into practice, OK?

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.

OP, I hope you can take a total break. Same for me. It’s not fair that you (me too) basically have a “child” suddenly to take care of, but you never asked to have a “child”.

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.

Yes it has changed me. I have lost my family since I am not only medical POA but financial POA and my siblings resent it because the money is not easy available to them like it was in the past. I am also Trustee of mommas estate. I have had to put certain restrictions on handling mommas finances because siblings were taking advantage of her and stealing from her. They don't like it. Neither does momma because she enables and has a codenpency relationship with them. They treat me horrible. I guess it is a way to get back at me. You either give them money and become part of the family or you are excluded. I have had to back away from them and momma to protect myself. She does not see it and believes that I am in the wrong and should be the one to make up. I have noticed that I do not put up with crap as much as I use too and I am more vocal about it. I guess because I have been hurt so much. I live out of state and have been caring for momma for over 12 years. I belong to a couple of groups over here and have hobbys to keep me busy. Also go to the gym three times a week. Try to take care of myself. Don't know how this is going to sound but I love my momma and trying to take care of her the best I know how too but I will be happy when it is over. I dread the funeral and afterwards though because I know my siblings will be at there worst with their hands out for money. They will probably sue me. It want do any good because I have done nothing wrong but that is not going to stop them from trying. I just want to grieve and go on. I know that if anybody has read my posts you are probably tired of reading about me whining but I am tired too.

I have not had to care for my Mom physically since Aug 2016 when I placed her in an AL after 20 months living with me. She passed Sept 2017 at the age of 89.

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.

Caregiving has made me even more negative about the future than ever before. At 67 and caring for a 95 year old who is still somewhat mobile, I can only see a bleak future for myself. So most days when I'm not at work or caregiving, I contemplate what will happen when my patient dies and I get to face an alone future with not a soul to look after my concerns (other than a lawyer). BTW, did anyone hear yesterday that Social Security will be running short sooner than later. Yay! So glad I've been contributing since I was a teenager.

One thing I had no idea what had happened to me was my mind changed as a direct result of realizing that my father was now in the new stage of life where he needed care 24/7.

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.

This is an interesting topic. I did change as a result of caregiving. What I found is that it accentuated by strange personality traits. I am a planner and try to anticipate issues before they happen. That is my natural personality.

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.

Apart from all the benefits for my mom from me having helped, I see no benefits for me. It’s only been detrimental to me. I have no regrets; I’d do it again. It was the right thing to do. But it was only detrimental for me.

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. 

FB,

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.

5 years ago my mom began her decline, at 85. In and out of hospitals, SNFs, in home care, caregiving agencies, etc. My other sibling lives out of state, I'm literally a story that hundreds of us have told many times on here.

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 wonder if ANYONE (family caregiver/helper) got healthier and happier from caregiving/helping?

I worry a lot and I’ve become very resentful of my parents for causing the worry. I am angry that my good years are passing by and I am still dealing with their issues.. Very depressed, angry and resentful. I don’t know how my husband can stand to be around me sometimes.

Caregiving has changed me profoundly. I miss the person I was. I’m not much fun to be around these days.

Yes, my mother gets on my nerves worse than before her hospital fiasco.

Helping my husband care for his mother (now deceased) and father (will be 90) nearly cost me my health and sanity until I said "enough is enough" and refused to enable the "charade of independence" anymore.

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.

I take care of my mom alone. Siblings have all passed leaving me to deal with a dementia hallucinations person. I have told her I have a life and am trying my best to live it. I go to work to get away. She use to call me 3 or 4 times asking me when I will be home. I express I am working and she has not been calling as much. Of course, her eye sight is getting worse and can't see phone. I do have a nurse coming in once a week and physical therapy once a week. Looking for someone to come to house, so expensive. She has fallen 3 times in one week. Have to do something soon before I go nuts.

Sounds like my Father - I havnt had a boyfriend in 7 years - had to post pone 2 jobs , sold one house 🏡 my sister who hardly knows him kidnapped him and took him 3000 miles away from his Home 🏡 that cost me $16000 . You have to seriously consider round the clock caregivers or a live in caregiver or say “ Dad if you do not cooperate you have to go to assisted living “ I have taken care of 4 sick people in the last 7 years - 3 died . I feel my age and I look ragged . I would not wish this job on anyone especially if you are alone making all the decisions and doing all the work . Time to tour some assisted living facilities - go alone and check them out . Look on Care.com , Next Door neighborhood app , Nesterly .com or a nursing school for a CNA . Even with Help coming in you still get burnt out . Take care of yourself . Your life and Happiness matter . Read Yelp reviews go to the senior center for advice .

I am 75 and my husband is 84 with dementia, We have been married 55 years. He is self-sufficient, but can not be left alone. (Leaves water running, turns heater up to 85).Also, he is hard of hearing, quit wearing his hearing aids, and difficulty comprehending. I realized the other day if this continues another 5 years, I will be 80. I am still very active and would like to travel. I know the only way is to have a caretaker come in to our home, or check on him a couple times a day. It is hard for me to let go. I do get out for a couple of hours a few days a week, but really can’t take him many places. Has anyone else had this conflict?

I take care of my disabled brother who can’t even use his hands, so I have to do everything for him, and my mom who is almost 97 with moderate dementia. Don’t even know where to start. I keep thinking of the things I could be doing. My brother doesn’t want anyone else but me. I don’t even make it through the night without having to get up every couple hours to change his diaper. I have two daughters i would love to spend the day with and enjoy the day out. This has been going on for about three years now. I am 66 and I look like I’m 75. I hope I live long enough to enjoy life.

I know what you mean, it’s a complete burnout. Not only that family doesn’t come to visit, the grandkids are scared of her, we have missed our yearly vacation and family reunions. My mom has been able to walk and get around fairly good for her age but recently she wants to go back to bed after breakfast, takes more naps, and when I need to go to the store I can’t until I can get someone to stay with her. I am not happy anymore, all I can do is sit here and wait until she gets a burst of energy.

You are learning through this, just as I am and I hope everyone is. I entered individual therapy as soon as I got my mother’s dementia diagnosis because I knew I was in for one of my life’s biggest challenges. Like you and your LO, my mom’s and my relationship has not been a close one. What I have learned:
- 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.

It‘s 24/7 caregiving a spouse. I wouldn’t wish this hell on anyone

At this point, I am actually feeling that I’ve gained something positive from being my mother’s full-time caregiver. In the 6 years or so that I’ve lived with her, she’s gone from being mobile but with much short-term memory loss, to frequent falls while trying to get out of bed at night, and finally to multiple UTIs and a hospital/rehab stay that resulted in her being completely incontinent and unable to walk.

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.

Omg! I was reading your story and thought it is mine too ! The problem is invisible boundaries, neither of you know where they are because your relationship as Father and Daughter has evolved and there has been a long steady perhaps quiet , but maybe not, SHIFT! You have gone from caring daughter to Carer. The Father Daughter dynamic has changed and it is too much for Dad to come to terms with.

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 👍

not sure where to begin. Personally i find it mentally emotionally and physically exhausting. I am trying to recover from a stroke. Im fortunate that i dont t need therapy but im tired.
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

I’ve always lived a somewhat carefree life, I never wanted marriage or children. I moved to London for a time when I was 17 and also lived abroad in France and Italy. But now I’m much older and my health isn’t great, I get a lot of pain and suffer crippling fatigue. My poor dad passed away last year and my lovely mum moved into a nursing home and has advanced dementia, I’m her only regular visitor. I feel trapped quite frankly. She doesn’t even know who I am most of the time. I’ll never let her down and will always make sure she has what she needs but even with her being professionally cared for this new reality and responsibility is a bitter pill to swallow. I take my hat off to all those who care for their loved ones at home, you are living saints all of you but it’s also a terrible thing having to sacrifice what often seems to be your own happiness and well-being. You have to look after yourself in all this too so make sure to take a little time out for yourself too.

Faithful Beauty,
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

To answer your question about whether I've changed as a caregiver, yes, I'm less in tune with my needs than ever before and I do a terrible job with self-care.
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!