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MamaBearlyThere Asked February 2023

With Mom in MC and Dad in AL, there is a crisis every week. I have breast cancer and will have surgery soon. What about my health? My life?

I accepted responsibility for my ailing parents in 2020, but how much is too much to ask? My mom has dementia, is incontinent, falls and breaks bones, and becomes very agitated (sundowning) since we separated her from dad. She is currently refusing to shower. Dad doesn't help matters. He enters the MC unit to eat & visit with her, and slips her Tylenol or "supplements" without telling anyone. He wants to remove her from MC, and can't accept her dementia diagnosis. He is 80 and thinks that he can be her lone caregiver. He won't listen to reason. I've tried explaining it in many different ways, hundreds of times.
My siblings are providing some help, but are often preoccupied with their own lives or families or live too far away. When I told my dad about my diagnosis, he said "well, good luck with that." My sisters just say that I will "be okay," but don't offer to do more than what they are already doing (which isn't that much). I am "on-call" a lot. I have to problem-solve weekly, if not daily, and my parents are always on my mind. I see them every weekend and call during the week, but I also work full-time as a teacher and that is not a job I can easily ignore.


 


How do I set some boundaries in order to pay attention to my own health? Is it possible to extricate myself from all these obligations? I've read that sometimes caregivers die before the people they care for. I don't want that to be me. I have my own family that needs me.

AlvaDeer Feb 2023
You need to pull back. You cannot continue to worry about every little thing. A tylenol won't kill Mom. And the fact is that your parents are of an age that if one passes at some point soon no one will write the obit that starts "He (she) was SOOOOO young".
You should express your fears for yourself to family pulled together for a meeting, and you should tell them you are "stepping back" now. You should consider hiring a Licensed Professional Fiduciary to pay bills and work on things. Use their money to do this. You can even choose to resign your POA and tell family you will pass care to the State if none of them want to step up.
You understand your obligation is to yourself now, I hope. Only you can make these changes. See a Professional Licensed Social Worker in private counseling practice a few times to give up the habitual control over things that cannot be controlled any long, but CAN destroy you.
I wish you the best. I am more than 35 years out from breast cancer that had spread to the nodes. You CAN do this.
MamaBearlyThere Feb 2023
Thanks so much for your words of wisdom. I especially want to thank you for sharing your experience with cancer. I have been seeing a therapist who is helping me with all of this, and I think a family meeting may be needed soon--if I don't get the support I deserve.
I think resigning my POA will be the last resort, but it helps to hear from other rational beings that I'm not being overly emotional as I deal with my siblings, my parents, and my health issues. It's so hard to maintain empathy for everyone else and still have some left for myself.
Nancymc Feb 2023
Family caregivers so often seem plagued with IRRATIONAL guilt ! The following words were copied from this site, since I found them extremely comforting.

“Guilt is for felons and evil doers. It infers that you CAUSED this and you are for your own evil purposes keeping it going.
The word that pertains for you is Grief.
Grief understands that there is no answer to many things, that not everything can be fixed, and that some things must just be endured.
Endurance doesn't mean you give up your own life on an altar to others. It means that you will have to learn to build your own life despite the grief you feel for others.”

copied from;
~Alva Dear, on Aging and Caregiving site. Feb 2023. About Misplaced GUILT !

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JoAnn29 Feb 2023
This is what you can do. Seems like Dad is OK. He needs to step up to the plate. If Mom falls, he goes to the hospital. Can he make decisions for Mom, then let him. If not, your a phone call away.
You speak to the Nurse at the AL and tell her you are going in for surgery and will need to recuperate with no stress. That Dad will be on his own. Unless an emergency that she feels he cannot handle, please do not call you. Give her the day of surgery and how long you will be in the hospital. Give her the closest sibling's phone#

Then you need to call Dad and tell him calls will have to stop. He will have to solve his own problems because you will be in the hospital and don't know when u will be discharged. Then u will be home recuperating and you do not need the stress of him calling you. Actually, you will not be answering ur phone. Then tell ur siblings the same thing, you will not be available. If Dad has a crisis one of them will need to handle it.

Your siblings need to realize how serious this is. That you may need chemo and radiation so you will not be able to do for your parents. That you need no stress during this. You need to concentrate on you.

Your parents are safe where they are. Its time for siblings to step up to the plate. And if they don't...you have one s****y family.

Boundries, u don't pick up calls from Dad. The whole reason they are where they are is so you don't need to be there for them 24/7. All you should be doing is visiting when you can and bringing them what they need. Dad has to rely on the staff.
MamaBearlyThere Feb 2023
Thanks for your reply. Dad doesn't have dementia, but he is not a rational person. He cannot advocate for mom. He only does what makes him feel better, so he is not allowing the staff to give mom the care that she deserves. Someone always needs to accompany them to doctor's visits, because he doesn't know the right questions to ask and he doesn't accurately remember the information he's given.
Luckily my husband has stepped in to help me with them, but soon his attention will turn to me! I wish I could put my foot down, but I'm so afraid no one else will step up.
Sadinroanokeva Feb 2023
I have finally learned to let the facility handle these issues. My health must come first. The more we handle problems the less they handle. I am letting them earn the $5000 a month. And I have my brother now doing doctor appointments and more visits. Other family members need be involved and we need to pull back. Always tough let go of control. Good luck. Take care of yourself..

freqflyer Feb 2023
MamaBearlyThere, keeping my fingers crossed that your breast cancer surgery goes smoothly.

Been there, done that, have the t-shirt. The surgery was the easiest part, Recovery was difficult. You will be exhausted for a few weeks, if not longer. Have brain fog for a month or so. I had to have rehab to gain mobility in my arm on the side of the surgery. Rehab was well worth it.

Therefore, let the senior living facility take care of any drama, that is what your parents are paying them to do. If your parents or the senior facility call you, just say "I cannot possibly do that". In fact, practice that over and over until it becomes comfortable to say.

You need a major "time out". You are NOT on-call for a duration of time. In fact, let the senior facility know you won't be available, give them a name of one of your siblings.
MamaBearlyThere Feb 2023
Thanks for your reply. I will practice saying those exact words: I cannot possibly do that. I appreciate you sharing your experience with cancer. This is going to be a big change for me in so many ways.
BarbBrooklyn Feb 2023
Mama, if your dad doesn't have dementia, then he is mentally ill or cognitively impaired in some meaningful way, or both.

The social worker should arrange an assessment so that his needs can be met as well.

You have NO obligation to them in reality, just in his distorted thinking.
DILKimba Feb 2023
Exactly! Dad may not have a dementia diagnosis, but he definitely has cognitive impairment. A lot of people don't realize that you don't have to have a dementia diagnosis to be cognitively impaired!
sp19690 Feb 2023
Your dad and sister have made it clear that they don't give a damn about you. I am sorry you had to learn about who they really are with your cancer diagnosis.

Knowing this if i were you I would stop all assistance to dad. Tell dad and sister you have to focus on you and beating this cancer so dad will have to help himself or sister will have to step up and help both dad and mom.

Now if sister refuses to step up then please keep in mind mom us being taken care of in memory care. Dad is obviously capable of helping himself for the most part with assistance - thus the name assisted living and the reason he is there. Let him utilize the staff for what he needs and your sister for the rest.

Now the question is are you going to be able to back off and take care of yourself? I can guarantee you if you die your dad and sister would find a way. Let them find that way now and walk away.

Sorry your dad and sister are selfish and cold human beings.
MeDolly Feb 2023
I couldn't agree more, I would walk away and let the chips fall where they may. They are both safe, fed and generally cared for.

You must concentrate on your health, both mentally & physically, you are in a battle for your life, you must come first.

Your father could care less about you, he has told you who he is, believe him.

I wish you the very best, do what is best for you.
BarbBrooklyn Feb 2023
I'm curious what sort of "obligation" you think you're under to your parents.

Your obligation right now is to yourself to get well which means putting everything else aside.

Call the facility tomorrow; talk to the social worker and tell them that you are off duty for the next 6 months, possibly longer. There are plenty of folks in AL and Memory Care who have no one.
MamaBearlyThere Feb 2023
Thanks for your reply. My obligation stems from the father placing all the blame for their troubles on me.
My husband and I arranged for the legal docs (POA, Advanced Health directives, Trust, etc.), searched for AL and MC, managed their doctors appts, sold their house (to pay for their care), and have been paying their bills for 3 years now.
Dad equates the sale of their home as the beginning of their "downfall" and seems to think that everything would be fine if they hadn't have sold. He blames me for making all these hard decisions I've had to make, and he still doesn't fully grasp the extent of mom's dementia and what the disease is like. She used to manage his entire life, and now I am in her place.
Hothouseflower Feb 2023
Your health and life are your priorities. Inform your family you will be stepping back to take care of your own health. No compromises.

I wish you well.
Nancymc Feb 2023
YES ! Exactly. Right to the point !
Dear mamabearlythere you have already gone way beyond your capacity in giving and taking care of others ! ! Caretakers very often do pay a huge price for being caregivers, sometimes literally with their own lives, as you have heard and you mentioned in you original question.
Please put your (now limited) energy into saving your own life !
YOU are entirely worth saving too ! Somehow you didn’t learn this before (which is sad, but oh-so-common) but now it’s in your power to save yourself.
Grandma1954 Feb 2023
Any possibility that dad would be willing to move into MC and help "take care" of mom? He could still come and go as he would like from the MC part of the facility. (this way they could also control what he is giving her.)
Tell your sisters that you are going to make them the "First Call" for the duration of your Surgery, recovery and any follow up treatment that is needed. That way they can put out the fires, they can get a taste of what it is like to be on the "front line" And you can take care of your health as that is your priority at this point.

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