I've been a caregiver for my parents for almost 20 years. First, for my dad until he passed. I played support person for my mom and helped around her house on weekends, etc. For the last 8 years, I've been my mom's caregiver. She has heart failure, diabetes, and now some memory stuff is happening.
My husband, son, and I moved in after my dad passed to take care of her property and her. Flash forward to today. She refuses to do the things that she is told to do by her doctors, eats whatever she wants, etc. Then she ends up needing medical care. My husband and I have to take time off from work to take her to the appointments.
My sister and brother are useless. Even when I stand up to them and tell them that I need them to be on call for a weekend so I can get away, they have excuses. So, I give up!!
I am so lost. I really just want to just be her daughter and not her caregiver anymore. Shes getting mean at times, snarky, and always makes comments about the meals I make for her. I work from home, so I don't get away from the house much. Soon, we'll be heading back to the office, and that will open another box of crap to deal with.
My only support is my husband. We can't even get away for a night or an afternoon anymore, with out her calling me that she doesn't feel well. I don't know if I can keep doing this. I'm angry, tired, depressed, and just down right sad anymore. I used to be funny and a clown. Now, I don't know who I am anymore — a shadow of my former silly self, I guess.
What should I do? She refuses to pay for any help. She has tons of money in her accounts. I feel so trapped.
Sisters refuse to help. I felt really guilty at first charging her - but was also resentful for doing this for free....
You need to take control of her finances so that you can make the decisions…you and your hubby need the break. Burnout is real so change the dynamics immediately.. find your peace… we only go this way once!
if after exhausting your point on this, she is still unwilling to go, you might need to petition the court for guardianship. If she obviously cannot live or do things on her own, then you’ll need to voice concerns about safety and behaviors to the court. Things like can she still keep track of finances, or bathe and groom by herself, if she has an excessive amount of falls, hallucinations/delusions/memory impairment of concern, etc. it helps to keep a journal and record all your concerns as they happen- dates and all. If your area has it, check into emergency temporary guardianship- in my area (Florida) that process takes a shorter amount of time opposed to petitioning for plenary guardianship at the get go. Temporary usually lasts for 90days. With the emergency temporary, you will be able find placement for mom during that time, and probate court will send out 3 court appointed professional evaluator’s to evaluate mom in depth and thoroughly. They will then decide if mom needs a permanent plenary guardian (guardian over person and property) based on their observations. Of course you would be in charge of all her affairs- but it will be NOTHING like you’re going through now. More of the secretarial side of things. Which will leave plenty of room to be able to be just daughter when you go visit her. Also, when it comes to guardianship, all of the costs for facilities/meds/personal necessities must come from her finances. And you can do that legally through all the guardianship. I hope you find your answer and get the break that you genuinely deserve
If your mother is declared incompetent to make her own decisions and there is no POA, she may have to become a ward of the state. Of course, you would just like to be her daughter and not her caretaker, but her care needs are going to become greater and greater, and the situation is not going to go back to just mother and daughter.
I would suggest that you begin disconnecting from your Mom 24 x 7 immediately. You have a husband and kid. You need to move out...like now.
If you don't move out, you will be at her beck and call. Start moving out, seriously. The statistics around caregiving says that many times, the patient will out-live their caregivers...and I can see that happening in your case. You owe it to your husband and son to be healthy, both mentally and physically.
As for money, go and get another job that takes you out of the house and potentially talking to non-caregiving people...and please, please, please, do not make your husband or son become your replacement slave.
You might need professional help to get through this transition. This is not easy. Investigate caregiver services. However, you have to move away from your Mom. Chances are that she doesn't realize how destructive she is and her disease may have progressed to the point that she can't control her emotional state.
It would be useful to do a calculation of the value at commercial rates of what you and your husband do for her and her property, compared with the value at commercial rates of your occupancy of the house on a share-house basis– all for 8 years at increasing rates and ‘needs’, leading up to the comparison at current rates. If the balance is in your favor, present her with a bill for it. It may change her attitude about what a big favor she is doing for you. The chances are that she and you have completely different ideas about who is doing who a favor. For example, she probably doesn't count the cost of 'home-owner' type jobs that are normally not paid, even though this is NOT your property and she is the one who benefits.
To continue with it, you ask for a legal agreement, including acknowledgement of the back pay. The agreement has different obligations for you and self-help for her. If she won’t agree, you tell her when you will be leaving. If she agrees, get it drawn up by a lawyer.
This strategy is a way to ‘rock the boat’ big time, without actually moving out first.
2nd, are you and your family paying your share of costs to live in her house? I ask this because you could hire a taxi or other ride share to get her to appointments, with your money. Cheaper then taking time off work.
I understand that you moved in after dad died, what I don't understand is, did mom actually need 3 live in caregivers to take care of her property and her.
She could have easily paid for yard and house maintenance and gotten use to living alone or faced the reality that something needed to change.
If you don't want to continue as is, you and your family need to move out and let her figure out if she can live alone or needs to accept change.
Nothing you posted indicates that she needs a facility. Nothing indicates that she is mentally incompetent, so you can not force her out of her house and home. The change must be you leaving.
If possible , move out and stop helping her .
A wise social worker from the County Area Agency of Aging told me
“ Stop helping her , let her fail “.
My mother refused to hire help also .
Stop propping up your mother , so she is forced to accept help from paid aides .
Bless you for doing this amazing work of caring for your mom, and may you find the help you need to get back to yourself!
If you can find an alternative plan for yourselves, you will have a bit more bargaining power – even if you don’t actually move out.
I went thru a similar situation. Moved my mom from another state, and she ended up living with me for six years. No assistance from my brother - not financially, not emotionally. In fact, he refuses to communicate with my mom or me.
My mom has few financial resources -- she spent wildly and never saved a dime -- so bringing in care was not an option. I had to save every dime she had from the sale of her home to pay for the first two years of memory care, and then she'll go on Medicaid. (Around here, few MC homes/facilities will accept Medicaid residents without 2 years of private pay.)
If you haven't already, you need to get POA, so that you can access her resources to pay for her care. And then, you need to tell her what is going to happen. It's no longer a topic for discussion. Period.
It's so hard to transition from being the daughter to the one who is calling the shots, but if her memory problems are indeed dementia, it's time to make that transition. Your top priority is ensuring that she's clean, well-fed, and safe -- and you're less likely to be able to do that if you are stressed and stretched too thin.
For what it's worth, the first five years that my mom was with me, she was nearly impossible to live with. It went far beyond snark -- she was angry and mean. And then, that just kind of dissipated. It was part of her dementia, and thankfully, it is now passed and she loves me more than she ever has in her life. She's happy in the MC home, and thrilled to see me when I visit.
You got this. You're not horrible for wanting to change your circumstances. And eventually, you'll look back and realize it was the right thing to do for you, for your husband and son, and yes, even for your mom.
Good luck.
It is not the responsibility of your siblings to step up and relieve you. It is not their responsibility to take care of your mother, just as it is not YOUR responsibility to continue to be her constant caregiver.
You do not need to do this any more. You feel trapped because you have already set a precedent as you have been helping your mother for so many years, and now she has become dependent on you.
Does her current condition require someone to provide 24 hour supervision and care? Or could she live alone independently, with minimal assistance?
Take a minute to evaluate what she actually NEEDS, what she WANTS, and then consider her options.
She could continue to live at home, with hired aides for personal care, hired housekeeper and handyman to help maintain the home, and hired yard care.
If she can not afford those luxuries, then she can live without.
You need to start taking care of YOU, and your family, who has compromised long enough.
If your mother is not safe or able to live independently, then consider an assisted living or skilled nursing facility, depending on her needs.
Let your mother know you have lost yourself having been there for her for so long, and your family needs you now. If your mother is selfish, spoiled and unreasonable, then she may get angry. She may just feel hurt because she has become accustomed to the attention she has had from you for so long.
If she is calling you more often than you want, set boundaries. Decide how often and when you should talk to her, and call her on your schedule. Block or ignore her calls outside of those parameters. Don't worry, she will find someone else to call. Remind her that if she is an emergency situation, call 911. Then, have the first responders call you.
Now you need to consider if you're willing to go to the expense of moving out of her house, plus the emotional side effects of dealing with abandoning your mother. If not, then you need to turn your inquiries to how to get additional outside help for your mom to supplement your caregiving. If her income is limited, she may qualify for county funded in home visits from aides. Contact the Office of Aging in the courthouse of the county she lives in. Begin the process of applying for as many hours a week of free home visits your mom qualifies for. Like I said, if I understand your situation correctly, the day you gave up paying your own mortgage/rent, is the day your siblings "got it in their heads" that You owe your mother, not the other way around. It's unfair, but so very common.
She will have to get in-home help if you leave. Be very careful not to get sucked back into the gravitational pull of caregiving. She sounds selfish and entitled.
You could tell her that you no longer have time to go over and do things for her as you now have to go into work everyday and take care of your own family.
Nothing will change if you stay there. Make plans to leave, and just go. It won’t be easy, but it’s easier than remaining there. She will guilt you out. Your siblings might too, as it works for them to have you there. Leave anyway.
When the siblings lash out at you. Best to ignore them. Not worth the effort in dealing their brand of nonsense.