Follow
Share
Read More
This discussion has been closed for comment. Start a New Discussion.

214 Comments

Newest
First Oldest
First
4 5 6 7 8
I guess I am a 'seasoned' caregiver, having buried my mom after years of Dementia care and my refrain is:
Make better decisions than I did and don't do this. It has the huge potential to ruin your life, your health, your finances, everything.

I regret this and I am struggling to rebuild my life with ill health. I try and I try but I don't think I will ever be the same.

When I was in the trenches of caregiving, people would tell me about how I was 'earning my crown in heaven' and other such BS and it took everything I had not to choke them.

There is nothing right or just about doing this and I am still on this site because of the tremendous amount of support I received and still receive and my take on it is that if by what I write here has any effect on a new caregiver's choices I can at least take some comfort in that.

I am an advocate for placement. Do your homework, find the best place you can with the resources you have and continue to live your life in your own way.

Do not sacrifice your family and your health and your financial future.

It's bad enough that unhealthly aging and Dementia takes the patient but that it takes everyone and everything in its orbit in unacceptable.

Don't do what I did.

lovbob
(8)
Report
The worst part for me is that I no longer even like my Dad. I have Mom and Dad both. People outside the family think Dad is wonderful, such a sweet man. To us he is just plain demanding and mean and very self centered. I grew up loving my Dad and now I don't. He has sucked it all out of me over the last 8 years with him in our home. Mom is the one who requires care. She is totally disabled but mentally alert. Dad is going downhill now but still able to care for his personal needs. He still drives and goes "to the store" (bar) every day. The one thing I have learned from this is I WILL NOT LET MY CHILDREN DO THIS FOR ME. I want to go into assisted living or a nursing home, whatever, I will NOT live with them. I want them to still love me when I die, not be overjoyed that I'm gone.
I hate these feelings but don't know how to make them go away.
(7)
Report
Stressedmom, thank you for telling the truth on here. I have tried to do the same.
(4)
Report
I read these same things almost everytime I come on the site. No, there is no easy way to do anything when your a caregiver! You lose yourself in EVERY WAY..!!!! No.... you can't go to the store ,Dr's. appointments ( unless it's for your charge), ....anywhere! You are trapped, because you have empathy and respect for those who need your help....especially when there IS no one else. You spend all your time and I do mean all,.. just trying to keep your head above water physically, financially and mentally! Most of us doing this don't have the funds to hire extra help or find someone to come in so "We" can get a break.....! Who are some of you kidding! I hear things like it is a blessing to do this or you will be rewarded in the end...! Please ..., this is a thankless job, one that will suck the life out of anyone who doesn't have the support or means to "Do the hired help bit"!!! We have no help from any one of our family members, it's tearing us apart! We are in constant turmoil as to what we will do next, not to mention what might happen to my MIL's health. Her only daughter could give a rats*** about her wellbeing and that just enrages me further!!!!! I take a deep breath several times everyday, so I can cope with this endless situation.....! I have heard to many condescending comments here from some "seasoned caregivers", for those of us WHO GIVE EVERYTHING WE HAVE AND MORE, to do all we can for our family member! I like the comment "why don't you walk in my shoes for a week or two and see how you feel after" !! Maybe then those that THINK they know it all will think twice about how their comments offend those who are struggling just to get through the situation!!!! And I am positive there will be feedback on my comment as well, because the know-it-alls won't be able to resist..... Power to those that are struggling, I hear you loud and clear
(7)
Report
I'm taking care of my Mom and its not getting any better,you must do what you think is best for yourself .
(0)
Report
Roscoe, you are looking for validation and a way out. If it is too much, admit it and get on with life. There is no shame in saying "I bit off more than I can chew" or the care skills and care responsibilities required have exceeded your capabilities" and the loved one needs something better suited to their needs.

Roscoe, it's okay to say no. I've done it. I struggle every day but find strength here at this site because I read what others have done or are doing and I know what my limitations are. I don't judge, because everyone has their own reasons for the choices they make and some don't have a choice at all.

Emancipate yourself from this torment. If circumstances change, you can change your mind later or contribute to loved ones care in other ways...it doesn't have to be on-site round the clock care.
(2)
Report
It's okay to say it whenever you want. You are in charge of you. Everyone else be damned!
(5)
Report
Where do you draw the line......some things to ponder when caring for a parent.......quitting a job to be there to provide care, not taking care of yourself physically, do you totally wear yourself out......I could go on and on......when is it okay to say 'no more'?
(1)
Report
Some had mentioned many of the horrors of the unfortunate situation of taking care of an ailing parent.
I, sort of have, or see from a diferent perspective: Yes, our parents raised us according to them. Well or not, is, for this group or question, irrelevant. It is just a fact.
What I see is not a debt, is more like a transfer of dreams from a generation to another, a genetical factor common to all species. Therefore, we are not in debt with our parents, we are in debt to our children.
So, if for love or obligation or bad luck we have to do it... it has to be done. But, I insist, we have as aprimary duty, to take care of ourselves, otherwisw is of not use. And it also means to mark limits. Dificult as it is.
We did not choose ourt parents. They did not choose us. Is a sort of a matter of luck.
On the other hand, must of us, at least in occident, choose our partner(s) usually sort of thinking. Taking care of a wife/husband is the real difficult duty, the nighmare of caring. Be patient and careful.
(2)
Report
Veronimck, I got into my La Bria Tar Pit by starting off the same way you did--figuring I could do it all and better than anyone else. That may have been true but about halfway through I wore out, got stuck in the mud. I have seen the good, the bad and the ugly of caregiving through taking care of all the elderly parents in this family including stepmothers, in-laws and my own. My mother and her mother both died after lengthy illnesses (my mother breast cancer) and my Grammy Alzheimers. But they didn't complain and they tried to make the world a better place when they were still in it. You can go either way when you get old. As I approach my seventies, I donate artwork to non-profit organizations and have tried to set up a way of life that will be other-focused, not self-focused. I try to keep enough people in my life so that I don't concentrate on one and suck the life out of that person as my MIL has done. She refuses to see her friends, refuses to go to adult day care activities, refuses to allow her friends to come visit her and then complains that she is bored. Well, guess what, Misery Incorporated: I DON'T CARE. And I am not going to care. When I haven't been able to celebrate any kind of meaningful Christmas with my own family, I spent the day at a soup kitchen. I always get way more out of those being helped than I give. They are funny, kind, courageous and often grateful for way less than I have. No self-pity here. But I am going to take no prisoners here when told to keep figuring out how to please the permanent malcontents and that some guy in the sky will reward me later. I'll take my chances here.
(5)
Report
I agree with FedUpNow. My son owes me nothing. I knew when I made the choice to become a mother that I, also, made the choice to love him, feed him him, clothe him, educate him, take care of him when he became ill, etc. This was my choice. He owes me nothing. But, even so, I got a smile out of him, a hug, joy at his accomplishments, a helping hand, etc. My mother, on the other hand, seems she is owed by me to take care of her to the point of being disrespectful, ungrateful, stingy and thinking that my purpose in life is be her slave.
I may sound bitter and resentful because I am (no matter how hard I pray for these feelings to go away)
It doesn't bother her at all that not one of her other three children does nothing.
This has been a most unpleasant and unrewarding task.
I had strength, compassion and courage (which is why I attempted this; but, she has beat me down.
(9)
Report
This is the cruel journey in life that we will all go through........infancy (needing care to survive).......then the years pass.........our teen years........our invincible 20's and 30's........we hit our 40's (still feeling pretty good).........and then the 50's hit........and it's all down hill (in my opinion)..........and if we live that long.....the 80's and beyond hit......and it's like these people are infant's again.......almost to the point of needing the care of a newborn.......it comes full circle.........and then we die. What a rotten life!
(0)
Report
I've never had any total 'freedom' in my life. It's as though I lived my life through my siblings and through my parent. I lived my life through them and it's still continuing. I've never had my life to myself.......I was always 'burdened' by someone else.......the curse continues!
(0)
Report
When I started caregiving, for the approximately dozen adults I took care of, this was once true. It is no longer true. And in the process of giving and giving and giving, I gave away myself until I need help to exist. It isn't a question of no gaining strength and courage. It's the problem of going so far beyond that that is no longer possible to gain anything except incineration. Nobody seems to recognize when enough is enough--especially from the comments made here many times.
(3)
Report
"When you become a caregiver, someone who is doing the right thing, you gain a strength, courage, and compassion that will enrich your life."

No, everyone does NOT gain strength, courage and compassion that enriches our lives. Unfortunately, far too many of us gain frustration and exhaustion and a horrendous depletion of our own lives.
(4)
Report
At the end of the day, I have, finally, in some ways, taken care of me. None of us will get even 3 more minutes on earth for giving up our lives to take care of someone else. I am not sure what comes after this life but I'm not going to hoist myself on that petard to justify how I wasted my one and only life here.
(2)
Report
Taking care of an aging parent is very, very, very exhausting. And, until one does it, one doesn't understand how demanding it is. My siblings have been checked out for years. It is a disgrace and has caused me to cry multiple times. Yet, I know that I am doing what is moral - and, at the end of the day, I know I've done right by her. My siblings will one day have to give an account to one that is above all of us.

Roscoe, please get some help from organizations in your area that can help. There are volunteers that can provide assistance and give you a reprieve.
(0)
Report
The ones who say 'they took care of you when you were young' have never walked this walk.

Fed Up you nailed it.

lovbob
(6)
Report
The one thing I keep hearing here that I disagree with is: They took care of us when we were young; we owe it to them now. They took care of us for five years before we went to school and then they had "respite" care in the form of teachers. Plus our toilet training went on for two years or LESS! Putting in 17 years of changing an adult soiling herself with a huge load and NO END IN SIGHT--she is only getting WORSE is not remotely the same as the care we got when we were children. They called us into this world by giving birth to us and we got better as each year went by and their workload lessened. In six more months, I will have taken care of my MIL (who DID NOT raise ME!!!) as long as it takes a child to graduate from high school. Instead of celebrating her coming independence, I will have to change a diaper that stinks up the whole house and know it is only going to get worse. THIS is not payback. This is pure, unmitigated HELL!
(8)
Report
Yes......it's either quit your job and take care of your parent......or stick them in a 'rest home'........and we all know what those places are like, not to mention the money involved and the shoddy care that some of them provide......the curse continues!
(1)
Report
Hi Roscoe,

I quit my job, one that I worked so hard to get and that I dearly loved, to care for my mom.
I am on the other side of caregivng now but quitting my job is the one thing I really regret since the industry moved on in my absence and getting another job like that one is not going to happen.
I loved my mom, but I wish I had handled it differently.

We know so much more now than we did when I started caregiving 9 years ago but more and more people are being sucked into this vortex of elder care.

Good luck and I hope you make better decisions than I did.

lovbob
(2)
Report
A huge thing is money/finances.......can people actually quit their job? Just think if everyone who had an elderly parent.....quit their job.....it's a terrible situation to be in.....I'm just thankful that with combination of planning and good luck.......money is not a problem for me and I don't ever have to work again if I choose. With that said.....I was still planning on working a few more years on my job......and now I have to purchase health insurance........the curse continues!
(1)
Report
I have been caring for my mother for almost 3 years and am disabled myself. I am sometimes overwhelmed but I take time to go to my own room and be alone each day. I am enjoying my time with my mother because I know I won't have her forever. She took care of me when I needed to be cared for and now I am glad to return the favor. My brother and sister don't help much, nobody does, and I don't get to go out or anything. I don't have a husband around to bug me about not getting enough attention from me for one thing so that helps a great deal. I was an inhome caregiver for 9 years, I think that helped me with my situation a great deal. I do however need more money. That's about my only problem.
(1)
Report
enlighteningbug... you are my heroine!!! what you are in, and what you seem to be doing is just too much. I don´t believe I could do it. Good luck and many big hugs
(0)
Report
To windy town, I didn't mean to belittle or slight what you are going through. I was talking about the initial panic and helplessness when caring for your parent is thrust on you. That eased for me as I got better at the job. When I let go of perfection. Again when i learned to do exactly as my Dad wanted, giving him automony we stopped fighting, and he began to take my advice. I taught myself to live in the moment, and just handle today. When I let go of my anger and frustration at my 6 siblings not helping, being left all alone to handle Dad's stage 4 Parkinson's, they started to help, giving me needed breaks even for 2 hours.

I see a therapist once a month, he has been an amazing asset. Most of these gains are because of him.

Both Medicare and Tricare will pay for you to get respite care. Tricare up to a month a year. Thank you for all you do. You must be a terrific friend. Cause you are a wonderful, loving person. I do understand. I have had MS for 40 years. I have learned coping skills. Funny, but Dad having a neurological disorder finally understands the hell I been in for those 40 years. Good luck,
(2)
Report
enlighteningbug -- your mother does NOT sound healthy --depression ++! Any chance that with her low income she could get help from somewhere that does sliding scale? Counsuling as a condition of residency? She should at least help around the house (teens have chores, long-term houseguests can have responsiblities).
Not good that it's causing problems w/your husband --living with a crazy hoarder MIL, preschool kids & a wife that is being driven nuts can't be fun.
(0)
Report
Hi there,

I can relate on some level, I feel for you, but I have to agree with others who've replied that you (and I) need to start thinking outside the box, getting real advice from people who "get it" wherever you can find it, and find a way to KEEP YOUR CAREER. I am a stay at home Mom with a 2 and 4 year old, my daughter has a year and a half before she starts Kindergarten, and my mother, after working as a psychiatric nurse in NYC for 40 years, became homeless when they reduced her pay for a couple months last summer, so she was forced into retirement at 67. She somehow made it that long by the skin of her teeth because she was making a decent salary, but she's quite crazy, a hoarder, more or less reclusive, and she's thankfully moving into an apartment over my garage in June...Sh'es been living in my house in my 2 year old's room with my husband and our 2 kids because she had nowhere else to go. She never leaves the house, she just plays solitaire on her computer and eats meals, rarely helps, never goes shopping, nothing, even though she's physically able.

In any event, everyone has these weird crosses to bear. I dod ALL her retirement paperwork, it almost killed me last fall. I almost had 10 heart attacks trying to get her to successfully continue her health insurance.

I am trying to tolerate this so she can wait until she's 70 to collect social security because she doesn't make enough from her pension alone to pay for assisted living, which she could need anytime. She drives us all crazy, she never get sout of her bathrobe, she has no friends and it's just me and my sister. She hasn't had a frined in 20 plus years. She divorced my Dad in 1976, hasn't had a relationship since, and he died 7 years ago :( I miss him!

Anyway, I need to find a way so she doesn't hoard in my house and so that my marriage doesn't self destruct from all her negative energy. SHe has some positive energy, too, but not much! My husband is really critical of her and I, and now he refers to her and I as one person half the time. It's really scary, I'm walking on eggshells trying to keep her out of homelessness until she has enough monthly income to go somewhere, I just hope it doesn't cost me my family. It's like walking a tightrope.

Whoa, life really is hard when there's a dependent parent and two little preschoolers who require CONSTANT attention. I don't get much sleep, I get zero real exercise, I am tired and depressed. I know I need to find a path for myself that's sustainable or all the work I've done will be in vain.

Blessings to all of us...

Stephanie
(1)
Report
I feel honored to be able to take care of my mother and grandma in our home. We also have my best friend who is dying of cancer and a sweet Down syndrome boy who lost his parents so I understand exactly what you mean about how hard it is and about relatives not helping at all. Still, I am so glad to know I can care for my mom in her hardest times and care for my grandmother who has Alzheimer's among other issues. Mom is also battling cancer. It sounds like you could use a helping hand.
(1)
Report
kathyt1, You are one lucky woman. I don't think that for most of us caregiving gets easier, siblings come around and that trapped panic feeling eases.

We're all trying to do the right thing and care about our loved ones. I think it's a misrepresentation that all these magical things happen through our desire to do what is right. My concern for others on this site is that they don't feel good about themselves because none of this has happened for them. It certainly hasn't for me.

When you can bring my only sibling across the ocean from Europe and get extended family to visit and give me a week's break, call me. I myself, am not clinically depressed. I'm depressed by the place I am in and no amount of pills will help my 'coping skills.'

I'm not so sure you understand where most of us are coming from without the possibility of a support system. Your intentions are good, I'm sure, but they don't reflect the reality most of us face in our own lives.
(3)
Report
The sibs always want you to get a job. One of my sibs helped care for my mom regularly until the end of 2011. Then her job got to be too much and coming in every other weekend to care for mom. I'm sure it is exhausting, I know I couldn't do it. But then sib doesn't remember how it felt to try to work and care for mom. She hasn't been in for a weekend now in six months, and before that, it was another six months. If only they would walk a mile in our shoes.

Then add the economy to the picture. The unemployment numbers are terribly skewed and misleading. Did you know that to be considered as employed in the numerous surveys conducted by the census bureau you have to be over the age of 15, and working one hour a week and being paid for it?
(0)
Report
4 5 6 7 8
This discussion has been closed for comment. Start a New Discussion.

Recent Questions


Popular Questions


Related Questions

Start a Discussion
Subscribe to
Our Newsletter