The True cost of Caregiving
by Daughter is trying
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.