The True cost of Caregiving

by Daughter is trying
(Alabama)

I am compelled to take care of my mother. No matter what the cost to me. I would never abandon her. It is an ongoing, detailed, absolutely consuming process.


I need to watch and safeguard her from everything from the heat or air conditioning in her room that she keeps turning off, to her soiled underwear which she just doesn't seem to see is dirty, to paying bills and keeping medicine and medical issues straight, to her teeth, etc. I have been doing the best job I can humanly do.

And it only happens by my daily vigilance. I love her and don't want anything bad to happen to her. I am her protector.

However, the cost to me is bigger than I even know. And I am barely able to even think beyond one day at a time.

What really gets me angry is when my brother types up emails and spreadsheets about the finances -which I handle with diligence. But he makes insulting remarks that sting and doesn't factor in the extreme sacrifice I am making, in fact he actually accuses me of stealing money as I struggle to make all this nightmare work out and keep my mother cared for.

I just barely, by the power of my will, keep it all together. And what do I get as acknowledgement? Well, my demented mother doesn't realize it all. She actually thinks she is capable to doing it herself. Which of course, over the years I have had to gently distract her while I do what needs to be done.

The hardest thing is to have someone diminish the amount of will, strength, love, patience, brains, it takes to keep all of this in order. My brother will say it should only take me an hour a day, and I should be working at my career.

Only someone who has not been responsible for an Alzheimer's mother as their caregiver would ever diminish the amount of time it all takes.

Instead of trying to take over for a week or two and let me have a break, my brother arrives and creates a boiling pot of stress and anger as he inserts himself into what I have been doing and criticizes, threatens and attacks me making me lose my cool that I have been keeping for years and years.

The ongoing cumulative effect of non stop caregiving is insidious. I have had no breaks. It is cruel to come in the guise of helping, thinking you are doing your part, and to create even worse mental anguish.

The cost to me:

1. Years of subjugating my life to prioritize my mother. What else might I have done?

2. Years of reduced income and added stress of working and caregiving at the same time. I am broke and getting older by the day.

I am not sure if someone will hire me next as I have become exhausted. If I had been able to just focus on my own career, likely I would have a healthy nest egg for retirement. Instead, I am looked down upon as a loser, non achiever, and I have fear of impoverishment.

Truly people judge you for your money. I am a devoted loving caregiver. Tirelessly giving what I can. But I don't have a nice home or car and struggle to pay bills and buy food. And who knows what will happen to me in my old age? I don't have a daughter, or IRA, or long term insurance. Somehow, I am considered to have been a slacker or negligent.

The truth is I have worked every day of my life, dawn till dusk when I fall into bed. No yearly vacations. Just diligent daily plodding work. I met my obligations but did not have excess to save. Which I surely would have been thrilled to do.

Instead I worked AND took care of others. Washed floors, toilets, laundry, cooked, no housekeeper, no husband telling me I would be OK, no roof securely over my head, savings account. Daily hard work, and just going on the love

I have to give to try to make the days and nights as good as possible for my aged mom and myself. A good day is having a good meal, feeling the sun, not being in the hospital.

Perhaps I was a fool to believe the principles of having Faith that God would take care of me if I did my part in what I thought was the right thing to do. I am still going on that plan, but as I age, I worry more. Hence being up in the middle of the night writing this!

3. My personal relationship with my boyfriend, who I wanted to have our relationship evolve into marriage, has deteriorated. He is furious that our lives are nothing but caregiving, and when my brother accuses him of benefiting from the situation he hits the roof.

My brother doesn't hear when I say how my boyfriend has paid the rent, food, as well as dedicated his life on a non stop daily basis for years. We have not gone on one vacation for years.

Our conversation is almost entirely about problems, medical decisions, my stress, anxiety, fear, and when the emails and phone calls come from my brother accusing me of being dishonest we snap. My boyfriend wants to get away from this caregiving life. He does not want to spend the last years of his life doing this.

He is kindly helping me for now, but since I am not free to leave as go with him, I have to stay and struggle as a single woman trying to have a decent life.

4. Ruined relationship with brother. When my brother tries to communicate his perspective to me, He doesn't hear me when I try to express to him what I am living with and what I have to do to make this situation work out.

I think about how if I had a lawyer to explain my position to my brother, to defend me, in the kind of detail my brother requires and I have no energy for dealing with, all the true expenses, costs, and endless time I spend on everything, there would be such a huge tally in my favor.

The small amount of money I have had to use for occasional unavoidable expenses in this long drawn out process of caregiving nightmare is hardly even worth talking about never mind ruining our long loving relationship. But when someone accuses me of being dishonest, it is very hard to forgive.

4. My health- HA there is no way to account for the stress and constant anxiety I live with. I have no back up retirement plan.

I should be doing everything I can to stay healthy instead, I am on a crash course towards exactly what I don't want. I never want to be institutionalized. Why do we have to die in these slow drawn out ways?

Well, even so, I would never abandon my poor mum, and I pray for a merciful end for both of us!!!
Thank you for listening.

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I know what your saying...I do
by: Anonymous

I truly understand what your saying. I'm 65. Let go of my job after working as a graphic artist for 23 yrs, only to get laid off with no retirement and the feeling that I just wasted 23 years of my life doing the right thing!

Having a good job and being a good worker. That's a joke to me now. People should never have to spend most of their lives. Because you only have this one life. Then that's it. so sometimes I think what is the point of all this.

My Mother gets COPD, My father goes blind, my sisters husband dies of cancer and she has to come and live with all of us, which totally screws up all of us. No one gets along. So I'm the middle daughter. I now have to take care of everyone. Then my Dad, my only friend dies of cancer.

If I didn't have my dogs I would be insane. It took me years to adapt myself to this position in life which I do truly hate, but I could ever leave my Mom and sister in need, so therein lies the catch.

I work at being happy and keeping busy with some of my own hobbies, when I even get the time. So I do understand a bit of what you feel is the True cost of Caregiving and you are so right.

So know that your not alone.

There are many of use out here now giving our time to our parents or sisters or brothers or whoever else and don't get much appreciation for it. We all appreciate each other.

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The best daughter
by: Florence Chabalik

I sympathize with the belief that you should care for your Mom. Don't give up as long as it does not compromise your own health.

Make sure you take care of your yearly exams such as mammography, pap, cholesterol examples. You don't need to explain yourself to anyone; this is your mom.Try to get someone to come in to help maybe 4 hours daily to relieve you.

You will need to separate emotionally from your mom to ensure your own health; this takes time for you to think in this manner and develop a resistance and a mutual acceptance to the inevitability of the situation.

Sometimes you need to walk away give yourself a break. good luck and I know that God favors people like you. In some measure your Mom knows that you love her.

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Tell your brother where to get off
by: Anonymous

It sounds as though you have an petty minded sibling who prefers to criticize while not lending you any substantial support for your parent.

I saw the same thing in my family when my pompous uncle carped about his sister's care of their mother, while not lifting a finger to help in the day to day ordeal of managing her affairs.

Why don't you tell your brother to take on the responsibility himself? Don't be a martyr. Learn how to say "no" and don't feel guilty about doing so. People will walk over you and manipulate if you allow them to, especially if they are blood relations.

And they won't care if they ruin your life with the yoke of caregiving, so long as they're not the one who has to change the diapers, etc. You should be entitled to have a life too!

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SAVE Yourself
by: Anonymous

Your sacrifices are admirable and honorable . . . and will lead to your own early demise. What you have done in your situation verges on saintliness. The problem with this is that you there will be nothing left of you but a shell.

I *loved* my mother, and I will again after she's gone. But right now, her demands on me and my life, my own earning ability, and my well-being, have made me detest her. And she doesn't have Alzheimer's and I'm not immersed in her care to the degree that you are.

You are willingly trading what is left of your own life for your mother's. I'm not finding fault with you, but you are in so deep you can't see another way to handle things.

As far as your brother goes, well, my best suggestion would be to keep a detailed journal about your daily activity for your mother, and include those exchanges and insults from your brother.

Someday, this might come in handy so that you will have a recorded body of work, so to speak, of everything you've done. If this sounds like just one more task on top of everything else you're responsible for, remember, this is for *you.*

If you're determined to give this significant gift--the exchange of years and years of your own life for your mother's life--make sure you have a detail accounting (like those spreadsheets you're sent) to give you ammunition to fight the criticisms and accusations.

I hope this ends soon for you.

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I understand
by: Anonymous

Exactly what you said ! I too have a brother or as I call him, my mothers son, who is never around. He is selfish and uncaring. I have been the only caregiver for my parents ... My dad died 5 years ago and am now taking care of my mom.

I do not have her living with me as she is happier in her assisted living with people she has gotten to know. I do, however, run errands, manage her melds, have her over for anything family and weekends.

I take her on trips and to the Casino which she loves. I have moved her 3 times and had her live with me while remodeling. Some days it seems like a thankless job and some days I feel like I am losing my mind! I do feel blessed to be able to experience things with her and listen to her stories. By now I know most of them by heart!

There have been times in the past when I've asked for help from my brother only to hear he already made plans. I just wanted to get away for a week to do absolutely nothing but all he says is that she will be fine by herself... He is a moron!

It feels good to sever that relationship. I don't have the stress of being disappointed any more! Hang in there!

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Hugs
by: Anonymous

This is a very difficult thing to do. I too was my mom's main caregiver - until my brother shut me out of her care. Because it is time for her to move into a facility and he doesn't think she should go. I did everything for her - she could do little for herself. She won't even eat or drink unless someone makes her.

I have completely stepped back and Mom won't see me. My mom is midway through vascular dementia and should not be alone at all. But, in my brother's and her infinite wisdom, they think she is okay to be alone all night and all weekend.

Through my insistence we got help coming in during the week, but it's a band-aid covering a very bad situation.

Sometimes it is better for the parent to be in a facility where they can have 24/7 supervision and care. My disabled adult son is still at home and I was being pulled apart. Going nuts.

I understand the strain and health issues. You have to look at this from the angle of what's best for your mom and you. Her health and well being must come before hers or your wants. My mom's doctor told me that, and it is the truth.

I toured some lovely places and I know that mom would be happy once she got used to it. I think the problem she and my brother have is the old outdated vision of nursing homes. Most are wonderful places.

I have told both of my boys I do not want them to have to go through this with us. It is not fair to the kids.

If you are not well, not at your best, how can you do the best for your mom? I wish you all the luck I muster for you, and hugs. You are a good daughter doing your best, but at what cost to both of you.

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