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.
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How is recovery for you?
You have the grandbaby to look forward to, you will be so blessed!
I do hope you have allowed the facilities to step up and do their jobs for both of your parents.
My sisters have stepped up their game and have taken a more active part in my parents' care. They are calling more, and shopping for the little things that they need. The facility keeps losing my mother's clothing. We keep having to buy her pants! We must have bought and lost 20 pairs since the beginning of the year! I also had to purchase more bras for her just before my surgery. All of those were gone too.
I'm still having to manage their healthcare to some extent. My parents have their own HMO (same as mine) and do not see the doctors/nurses provided by the facility---so I still have to manage their prescriptions, labwork, appointments, and messages. All the contact information is mine and my parents cannot advocate for themselves. Now that they can no longer drive---someone also has to agree to take them to see the doctor when needed. So, I have had to field some of these problems even while I recover because when a call comes in from my HMO (same as theirs) I never know who the call is for until I pick up!
Still, it has been a tremendous relief having an excuse not to visit. Being with them is so incredibly draining. I'm feeling grateful just to focus on self-care and my impending grand-baby (a boy, by the way). My daughter's due in July.
Just checking back in with you, thinking if you were able to make any stress reducing changes for your health?
We all just wanted to be a suport for you, if you need us.
How are you?
The good news is that the cancer has not spread to the lymph nodes, so I am very relieved about that. My big surgery (mastectomy followed by immediate reconstruction) is coming up at the beginning of April. As a teacher, it is hard to plan lessons for eight weeks of recovery time--I teach high school English.
Mom recently got Covid, so I've had to deal with my dad a lot since he doesn't understand why she needs to be isolated. Even though Mom is in memory care and dad is in assisted living, they still come to me to solve any problems they are experiencing.
Oh, and did I mention that my oldest daughter (24) who still lives with me, just announced that she's pregnant? So a lot is still going on...
As for stress reduction, I just breathe...and tell myself that I will be okay--I have to be okay....
You are not the hands on caregiver, you have professional support. So stop the guilt trip and do what you need to do to take care of yourself.
Shame on your father and siblings that they could be so uncaring about your health and well being. Remember that.
The people I know who have SURVIVED breast cancer started immediately with their own care. Diet, taking their doctor's advice to decrease stress, adding specialized supplements that are used to increase immunity, replace needed nutrients that the surgery, chemo, radiation, or immunotherapy and meds will deplete from your body. Going to a breast cancer support group, joining now.
Walking, swimming, a gentle exercise plan. And support, understanding for what you are going through.
It will take effort and a bit more to prioritize your health, vs. always having your parents on your mind. Caregiving can be like that, and that is why I suggest stopping now, even to the extent of not visiting. Something your mind can get used to. You may not agree. But you have said: "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." I hope your family will be rooting for you, supporting you, as well as a new found support group of women who can hold you up.
And signing up for an experimental study at a teaching hospital when all treatment options won't cure the cancer that you have. (you don't have that).
I want you to live, survive, and pray this road will be easy on you. It is possible to extricate yourself from all these obligations, please don't wait on anyone to get on board or to hold you back. imo.
Maybe stop doing anything that keeps you awake nights, like thinking about your parents.
God Bless you right now, today!
also you don’t need a meeting with siblings- don’t subject yourself to their arguments that they can’t step in. Give them a clear “ I will be stepping back for several months ( at least- as my health dictates) have them contact MC if they wish to be an emergency contact.
do this for you. I hear a concern your health concern may shorten your life. So do not add stress if parents. You did a great job. Work hard at releasing it and focusing on you. Best wishes
The other issues that come up, I assume, come in the form of phone calls. Your siblings can handle those calls from anywhere. Once you turn it over to them during your healing, don't interfere or it will all land back on your own plate.
Remove yourself from the person to contact in an emergency and replace with your sisters. Just stop altogether now.
Allow the care facilities to take care of your parents. Have them explain things to your Dad. Have them monitor your Dad (when he visits Memory Care) with Tylenol and supplements.
Can Dad be moved into MC with Mom?
Take a year off to recover from surgery and the healing necessary to survive the breast cancer diagnosis. You come first, you really do.
Contact an Elder Law Attorney.
https://www.komen.org/support-resources/support/support-groups/
I don’t believe your father doesn’t care about what you are and are about to go through, I think he just isn’t able to empathize the way he once was, it’s probably the same reason he isn’t accepting of his wife’s diagnosis and what this actually means, I believe it’s the same sort of driver that makes elders become so self involved. I would guess he also has some undiagnosed dementia going on along with the fact that as we become less able (physical or mental) our world gets smaller and our tunnel vision grows until it’s a matter of survival that all we can see is what affects us not the world around us.
Your father must have gone along with the plan to sell their house and make this facility their new home, maybe not excitedly but he saw the writing on the wall. Now that his world has become smaller he needs to blame someone, you, for the decision rather than take the responsibility himself but all he is doing is solidifying this was the rite decision. You could look at it as proving everyone rite. You are the scape goat because it’s safe, in his soul he knows you are always going to take care of them and you have. You have accepted this job because you know they trust you. Stepping back while you take care of yourself isn’t leaving them, you can still supervise knowing they are in the best hands possible when you let the facility know they will have more of the burden and your siblings can take the responsibility for putting out fires and visiting more, if they don’t that’s on them, you still have both parents safe and cared for even if it might not be what they are used to with you.
You can’t however expect others to step up if you don’t tell them what you need. It’s scary, they might say no but it has to be done. A family meeting sounds like a great idea, in fact if you can do this with the facility even better. Don’t give up POA just appoint someone your representative while your not available and someone in charge of updating everyone, parents too on you and how you are doing. Teach them how to be you even if it takes several people collectively to do what you do, it will and then when you are better maybe it won’t all go back to falling on you. Start your journey with as much peace as possible, stay strong.
Matilda
In order for you to overcome this cancer, you need to put yourself and your diagnosis first over anyone else. Your mother is in MC and your father is in AL, so they have people keeping watch over them and taking care of them; this is one thing less that you should worry about. Get your family and your siblings to help out with visits to your parents in order for you to focus on your cancer treatments and surgery. You can do it, but you need to stop stressing about your parents and focus on your health and doing everything to overcome the cancer. Make sure you keep all of your doctors’ appointments and follow their instructions, eat healthy, avoid smoking, do yoga, and exercise by simply walking a few times a week.
You will get through this, but you need to focus on your health at this time. Prayers for your successful treatments and surgery, and for your speedy recovery.
Don't rely on your father for sympathy for your own health or scheduling issues. Is the facility calling on you to solve "emergencies?" Someone is paying the facility for your parents' care. The facility needs to solve care and safety problems. They may not much spend time trying to convince your father that your mother is where she needs to be. Any time or attention you or your siblings offer in addition is an "extra.". You are only " on call" b/c you continue to answer.
G
Take a deep breath and be ready to set some boundaries with everyone you mentioned in your report.
Start with your siblings and have a group meeting with the theme being "Why Me". and then delve in to the fact that you too have a life and can use a lot of help. Tell them that you are pre-occupied with happenings in your life too and can use the help. And why do their lives matter more tthan yours?
Dads's not going to be of any assistance (sounds like) and you don't need his kind of help. You should strongly consider turning your dad in to the floor managers at the MC....he's going to cause some physical problems for poor Mom. Have them threaten to ban him or at the least - withstand a "frisking" when he visits. By the way, your Dad probably doesn't even know how insensitive his response to your cancer diagnosis was.
You are killing yourself and could use a friend to help you....anyone at work of neighbor that you might "lean-on" for some compasionate help? You got a lot on yhour plate and even having a social worker listen to you would probably help a lot.
Dementia is the worst of the worst as it does harm those that care and try to comfort. But you got strength and again, could use a local friend to share your challenges with.
Good luck and I hope you can turfn things areound to your advantage, health and well being.
G
As part of the process, I would send a notarized paper to the facility indicating the emergency contact. You can tell dad of your plan and remind him not to bother the contact about moving out.
If mom goes to the ER and needs a ride home, the sibling lives far away, then the sibling can tell staff that she would need a medical transport back.
Contact your siblings and tell them exactly that, pick one to be the contact from the home and let it be.
Time to use a complete the sentence, "No" .
Believe it or not you can be done with being the "Go To", the ball is in your court, the next move is yours make it the right one for you and your family.
You identify as your parent’s “go-to” person, but with one parent in MC and the other not inappropriately living in AL, recognize that you do not have to act as their “primary caregiver.”
Step back from these self-imposed duties or no one else will step up. Listen to the pilot and take care of your own emergency situation before assisting others.
You can’t control your siblings or your Dad’s behaviors and be glad you aren’t expected to.
I know you are fraught with worry, but a need for concern will increase and persist throughout their lifetime.
Let some of this stress go in favor of concentrating on your own healing.
Mom is being cared for by a professional staff! You CAN step away. What on earth is stopping you from taking care of YOUR needs?
I did hands on care in my home. That’s more confining than having a parent in a facility. Let them do all of the heavy lifting. That’s what they are being paid for, isn’t it?
Wishing you all the best. Take care of yourself and the rest will fall into place.
“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 !
This has to be very shocking news for you and your DH regarding the cancer. I am very sorry.
It is hard for elders to not be affected by change and change you can count on regardless of your own health.
Dementia or no. I would expect your dad to act out as he has a mental disorder of some type. I wouldn’t be telling him too many details. He is like a mischievous child who thinks he is getting something over on the establishment. Unfortunately, as the POA, you fall into that category.
Look for someone to run things for you while you tend to your health. Of course, using the parents funds.
You have protected the parents and your sibs from the pitfalls of old age and elder care when no one else was willing to. Like most of us, you didn’t know the price you would pay nor have a crystal ball to warn you that it is all too much.
I wouldn’t waste time with the sibs if they are not stepping up already. You don’t have time to deal with folks who don’t want the job.
Give yourself a promotion. Do as Alva suggested and find someone to pay the bills, provide the supplies and run them to the doctor. If there is a facility doctor you might do that for the interim. See what services the ALF has to offer that perhaps you weren’t utilizing before.
Use the resources that are available. This way you are prepared for the duration. The bases are covered. If the siblings start visiting. Great. I just wouldn’t want to be worrying about whether they actually would.
Keep in touch and let us know how you are doing.
In response to someone asking why you are obligated to abusive parents, you said it was because your father blames you for things. If you truly feel that you are obligated because your father blames you for things, I would suggest you seek counseling for yourself, Mama.
Another dreadful decision is you and your husband paying for these parents. If you are paying their bills, what about your own needs in old age?
You need help now, I am thinking. It is time to seek the guidance and advice of an elder law attorney. I think that you and your husband need to consider your own lives and to resign POA for ungrateful parents. Sorry, blood is not enough thicker than water to cause all this.
It is also time for you to consider counseling for yourself with a psychologist or a licensed social worker in private practice as a counselor to learn healthy ways to break old habits, old ways of thinking that clearly are not working now and never did work for you. You have new challenges to meet and your life may depend upon them.
I wish you and hubby the very very best moving forward.
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.
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.