Thankless job of caregiving.

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I have been caring for my mom that lives with Alzheimer's for 18 months. This began when her husband had to be hospitalized then rehab followed for several months. When this first occurred my siblings wanted to pay me for being with mom, but I said no, let's wait to see what happens. Well here we are, I am still here, caring for both of them with over $20,000.00 in expenses out of pocket for mom alone, to say nothing of no payment for this task.

We have just started to work through the process of trying to determine what mom owes me, she planned well for her retirement, and what I should be paid. But is has gotten really ugly, in fact my brother and sister requested an investigation by Adult Protection Services in our area, not just one, but two, one for my mom the other for her husband. I haven't done anything to raise this sort of issue. I am in the process of obtaining letters from neighbors and medical care providers to document my excellent care for them. I don't even know what the accusations are yet, but am still absolutely flaberghasted by them taking this sort of action. All over money, and paying me what this service is worth, it is definitely a 24/7 job which they have done little to assist. Their concern is that the share and share alike clause will change because of payment to me for service. But share and share alike has more than on connotation, not just the benefit after death, but also the responsibility when care is needed.


I don't know how big your mother's estate is, but it is very common when there is an expensive end-of-life illness for the entire estate or a huge part of it to be needed for medical expenses and care. In fact, many seniors who expected to leave a financial legacy for their heirs wind up on Medicaid themselves at the end. This is certainly disappointing for all concerned.

But it is no one's fault. (There are exceptions, where one child is basically stealing from the parent.) It is really sad when some siblings, in their great disappointment, start looking to assign blame.

Welcome the APS investigation. And see an Elder Law attorney about drawing up a personal care agreement, spelling out what you are providing and what your mother is paying you. Get the expenses-to-date settled as quickly as possible.
I've been caring for my mom for years with little to no help from my sibling. When she does honor us with her presence, it's usually filled with abuse and condescension, like I don't know what I'm doing but God forbid she should give up a luncheon or a manicure. As far as money goes, I haven't been hounded YET but this was anticipated years ago, and things are very tidied up by lawyers. So the only thing your siblings most likely are worried about is their inheritance, should they get one. Keep records of everything you spend, just in case they decide to sic the hounds on you. And see a lawyer for your own protection.
I've been my mom's caregiver for four years since my father passed away. Up to that point, she was still very independent and although we lived in the same home, her and dad pretty much took care of themselves rather well. Dad's death sent her over the edge (she's 91 now) and her alzheimer's and dementia have been gradually getting worse as time passes.

For awhile, I resented the episodes, the nagging, the continuous repetition of the same question over and over, the verbal abuse she bombards me with, etc. Then I started to educate myself on alzheimer's and dementia and my feelings/thoughts about it have shifted completely. She can't help it. It's a horrible disease and there isn't a darn thing she can do about it. Nor I. Except be there for her, through thick and thin. It's just me and her, I have no siblings and when dad passed away, the rest of the family basically drifted away from us since they wanted no part of it. I don't see it as a thankless job anymore. I see it the same way a mother would if they give birth to a handicapped child. Yes it is a burden but all you can do is ask God to help you carry the load. And trust me, He will.
It is amazing what the hopes for money can do to sibblings. I to care for my mother, I live with her and although I have 3 sisters in the area,,,, I have 1 that helps with out hesitation. The others 1 no help! and 1 help but always with the "well I had something to do BUT" ( meanwhile I have stuff to do that never gets done because I can't leave Mom alone to do it ) When all this started they all agreed they would help whenever I needed HUH??? So my heart goes out to you, but know you are not alone, the ones that don't help are the first ones there accussing you of some sort of wrong doing. It is very sad that your sibblings resorted to "legal butting in". See a lawyer for sure to protect yourself from them!
I suggest you make a log of everything. A journal of expenses, things you do to take care of them, things they say, events that occur each day, phone calls you make, Dr.s appointments, everything...... including and especially emotions. I found that actions speak louder than words and I am sure that your actions are noticed by a lot of people. I think it's a great idea to collect documents from people who know what your doing. Focus on care and not the negative energy, that's all it is, If your family insists on wasting their time on getting authorities involved to prove your not doing what's best and you are doing your best they are only going to prove that they are not doing what's best. Maybe... suggest to them, stop focusing on accusing you of wrong doing, and help you to do what's right.
When I accomplished the perfect solution to Mom's 24/7 care needs and told my sister that she will be cared for in an excellent place. My sister said "I didn't agree to this."..... Yet she wouldn't take Mom for an hour out to lunch or anything without being a pain about it. She did not want to help at all and surely not pay for anything Mom needed. She was mad she wasn't going to get money when Mom died I guess. So I bluntly said "you have these other choices... You can care for Mom 24/.... or you can pay the bill of $10,000 a month.... or go with the plan I arranged." That shut her up!!!! It seems that this Thankless Job brings out the best and worst in people, there are those who do the right thing,, those who use others as an escape to get out of doing what's right. As long as your doing the right thing and the best you can under circumstances you are given. You are blessed and will be Thankful in your heart.
Thank you everyone for your comments. And yes, their primary concern is the dwindling of the size of the estate. Well, if I weren't here it would cost more in a facility to say nothing, and most important of all, mom's welfare. She would hate it, become increasingly agitated, etc... She would not understand why she was there and would be extremely unhappy. Thank goodness for an excellent day program that I take her to, my only respite.
gladmhere You are absolutely right about the cost you are saving by doing this yourself. That is what your family does not understand. Therefore have agencies send you a form or something about the cost.... if someone were doing it instead of you. Make lists of chores required to keep it all going.
And the one that causes the most trouble? Always knows what I should be doing differently. Hasn't even spent a full day with her in a year and a half. A therapist, of course, also called in the request for investigation to adult protective services. Amazing to me!!
The investigator was here last night and of all things I had been accused of financial exploitation!! I have spent over $30,000.00 of my own money without reimbursement. Mom's POA states very clearly that nobody should incur expense for her without reimbursement. It also states that anybody providing care should be paid a reasonable amount. The investigator closed the case and noted it as a family squabble. Thank you everybody!
gladmhere whos the POA?

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