I have said that I think caregiving of my parents will kill me and now its like shit, I may just be right...yet here I am staying with him after pressure from a sibling that asked don't I have time in between tests before a major surgery coming up where the stage of the cancer will be determined. When I think about the possibility of him living several more years because of course, apart from vascular dementia, he is perfectly healthy, it sometimes makes me want to die. It is hard to see a light at the end of the tunnel. I hate our healthcare system that is concerned only with keeping a body alive with no consideration of the quality of life, LET ALONE the intense burden placed on free caretakers. I have heard it saves something like 500 billion in medical costs but too bad it doens't account for the price to our mental and physical health. I think it is a broken system and something has to change. Historically we are not supposed to complain but I can only think of one relative that lived past 90 from my childhood...
I do want to say that my Mom had a hysterectomy in her mid 40s. Since she was on hormone replacenent I will assume it was complete. The one thing she complained about was she did not have the strength she had before her surgery. Other women have said the same thing. So don't push yourself. Only do what you feel capable of doing. If you didn't go thru menopause before your surgery, you may now. Brother has to realize you are a senior too.
Fine today and what the h3ll happened tomorrow, fun stuff!
Congrats on your surgery and that the cancer had not spread.
Congrats especially for working on your boundaries. I totally understand the "acceptance" issue. Many times on this forum when I post advice I will often tell the OP/caregiver that there are other care options, they just need to accept them. Yes, it is a lot of internal work! Keep pushing your boundaries out farther and farther, little by little you will be 100% free from the caregiving.
I'm curious if you've ever asked your siblings what they would have done had your prognosis been different: a terminal diagnosis. Would they truly expect you to continue to participate in the caregiving? How would they have solved that problem? Make them answer this reasonable question. Whatever they tell you is what they will have to do if you bowed out tomorrow. And they will get over their anger.
So as to the father care: I did set some boundaries leading up to surgery and the weeks that followed. My one brother asked about 8 days before the surgery if I could stay with Dad for a few days before surgery and I said NO WAY! that I needed to be in a good place, keeping my anxiety under control and my Diabetes and that since I would not be allowed to lift anything over 5 pounds for several weeks after I wanted to get some things done around my own home.
Also, I spoke with the one reasonable sibling and we made an executive decision to bring on more help from the home care outfit that I had previously put my foot down to hire probably a year ago. I told him that it would ease my stress going into surgery and treatment beyond and that even in the best case scenario (which it was thankfully) I would not be able to do much. And now that I am pretty much back to normal we have kept the extra hours. So that is awesome. It was hard to get to even this point what with the oldest brother throwing a fit about how I should want to be taking care of my father and my mother rolling over in her grave that she has a daughter who does not want to fulfill her duties and money does not grow in trees blah blah blah. So I count what counts.
I still hate all of this but I realize before I can even get to a point where I would make a boundary- such as it is time for him to go to assisted living or memory care facility- I need to ACCEPT that THIS IS WHAT IT IS. And I mean acceptance versus resignation. I do not mean that I need to give in to the expectations from within and without but that I need to accept what the reality is even before any kind of change can be made; before any other boundaries can be set with the family...It is an inside job.
And what a job it is. Currently I waver between a semi-acceptance and full out kicking and screaming resistance. Like This should not be happening! And when will this guy die already! And I just want to take care of myself! It is his welfare versus my own...etc etc.
So, in the meantime, I will stand my ground on having the current level of outside help. I am not willing to do more. I am letting myself rest all that I want (HUGE). I am going to get more educated. I have been reading and rereading almost every post on here. It helps so much that people here are so honest about how much this can SUCK! But also reading here about changes that can be made in the future. So much about it is letting go of all these notions of duty and what we owe our parents. There is so much for me to work out with all of that. But first the kicking and screaming. The resentment that my parents, who had the means, did absolutely no planning for their future except that we would take care of them and allow them to live and die in their own home, not matter what the personal sacrifice and however long they live. I am willing to reconsider all of that but do not yet have the wherewithal to bring that up to the other siblings, who may be in a bit of denial about the reality of my father's dementia. I think it is conceivable he could live many more years, especially since he is now on a blood thinner and does not suffer any other medical issues. Ugh, it isn't that I want him to die it is just that it is so much more difficult to take care of him than I could have ever imagined and it very often feels like there is no end in sight. And it doesn't seem like all that great of a life for him, either. But it is what it is and I need to come to grips with that.
Keep those boundaries with your knotheaded brothers.
brain cancer who is 71 is that one or both of my 96 yo parents will probably outlive her the way things are going. Life is so unfair.
Don't let anyone convince you of continuing this, either someone else takes her or he goes into a facility.
Stand up for yourself just say NO, your health and mental well-being comes first.
I am so sorry to hear of your cancer, Sending support your way!
Same situation, almost exactly, although my cancer is almost certainly worse than yours, and my father is 93, but, I'm still here.
This is hard for me to write because I've got so many family stressors going on and I don't want to bring them into this, yet, I have to, because you can face it.
First, you need to stop caregiving. Even a stage 1 diagnosis can come with chemo, radiation and surgery. It can easily knock you down for a year. You may simply not be able to do it. Focus on healing.
Second, your family. Mine has been a nightmare. Awful defines them all. My aunt sent me a message when I got sick with thrush asking where my body would be. My cousin when I told her that I was sick in a text replied, "okay", and that's all she said. My other cousin decided I was a shitty caregiver. If you are married or have a close family great. Mine are rewriting my father's will, seriously, they are.
Third, you may get crazy. The first drug I took caused mania, I went full looney toons. Then I got thrush, the cancer got loose and I got crazy. At the same time my father had a cardiac event. I had to respond to that and no one in the family cared that I could barely walk. I got angry, let it out, and I'm the asshole. I was an asshole, but don't expect people to context you, they won't.
Fourth, everyone else may get crazy. Sorry, family been nuts, outsiders ok, but count on no one.
Fifth, build a care team. If you have family, it's right there. Your care team will change though. I've had people come on and drop off. It doesn't sound like you have family, so do the best you can, find friends, anyone, shuffle them do whatever it takes. YOU NEED THEM!
Sixth, beware people who have never had cancer. They think they understand, they do not. However, some get close and can be good helpers.
And, you get help. Find support groups, there's a ton, and go to them online or in-person. Find a cancer friend, become a cancer friend. Don't go it alone.
I can do more but that's enough to start.
YOU ARE NOT ALLOWED TO CARE FOR ANYONE ANYMORE BUT YOURSELF. Ok.
YOU have to be on your own team here. You have to put your foot down and say “no, I have cancer and I am only allowed to take care of myself now”
Repeat it in the mirror if you have to psyche yourself up to say that to anyone.
YOU are your patient now. That is just the way it is and tough tooties to anyone who thinks otherwise.
If you don’t stand up for yourself, no one else will.
Different situation for me but i put myself first — I got out of Dodge after my MIL died because there was no way I was going to take care of her developmentally disabled daughter for the remainder of her or my life. My MIL was not going to steal the remainder of my life from me. I pulled up stakes and left. In-laws were p***ed but who cares. They could figure it out themselves.
Although I don't provide "hands-on" care for my parents in my own home, I have had to expend a great deal of time and energy making decisions for them and being responsible for them. My mother has dementia and my father is as helpless as an infant without her. We moved them into Assisted Living at the height of the pandemic and now they both live in Memory Care. My husband and I (he also works full-time), have established POAs, and Advanced Health Directives for both of them, handle their finances (including the sale and emptying of their house), their taxes, coordinate and take them to doctor's appointments, manage their prescriptions, field endless phonecalls and complaints, oversee every hospitalization, etc. We visit them every weekend.
When I was diagnosed with cancer, I received no empathy from my father whatsoever, and my mother, of course, wasn't able to support me either. I have two younger sisters (54 yrs and 50 yrs) who I expected to "step up" and help me provide care for my parents while I was recovering. They didn't do much. I still was tasked with fielding the phonecalls from the facility and their doctors. No one visited them, and my dad was annoyed when I started skipping the weekend visits. No one else was "monitoring" the facility/staff, which must be done (again, this is my opinion/experience).
It is very hard to prioritize your own health, when you are used to being the dependable, responsible one. But you need to be a little "selfish" during this time.
In my opinion, you have the perfect circumstances right now to place your father in a facility where he can get the care he deserves. I had the same thoughts and worries that you have. I wondered about my own mortality. I realized that my parents (83 yrs and 77 yrs) did not prepare for prolonged illness or a decline in health, and I can't forever be held responsible for their lack of planning. Overnight, I shifted from the role of daughter to parent/matriarch of my family. My relationship with my sisters has forever changed too. As my mom's dementia progressed, so did their defensiveness and apathy.
I received a lot of good advice and support from this forum. I'm very grateful for that. I'm also grateful for my own daughters who encouraged me to seek therapy, and have told me how proud of me they are. And of course my husband's support has meant the most, because he has tackled this family crisis, side-by-side with me, since the very first day.
I recommend that you start taking care of yourself. Please relinquish your dad's care to your sibling and be sure that they place him in a facility as soon as possible. You need to focus on your own needs right now. I wish you good health and healing!
I am not considered the responsible one, quite the opposite. I am really not considered much at all- no one listens to my opinion because it was determined a long long long time ago that I have nothing of value to say, due to my age, gender and lack of financial success, perhaps. But sometimes I think I am the only one not in denial of this situation and who can prioritize and who even HAS THE DESIRE to solve these problems. I have set SOME boundaries. I insisted on part time helpers but it has just been push back ever since. They do not want to spend the money. I would rather spend my possible inheritance, that at this point I may never see, and save my mental and physical health. I think they are trying to be true to my father's value system that money is to be hoarded but never used. I am the black sheep who has happily replaced those kinds of hand-me-down values. For instance, my new value would be: What is the point of having money if you can't use it to make your life better? And sometimes I wonder if they are worried about their inheritance. Like could this just be good old greed? I don't know but I realize they do not want to increase their output of caretaking hours but mine! One male sibling told me my mother was rolling over in her grave that she raised a daughter who did not want to take care of her old father when I agreed with an in-law that our father needs full time care. Now we are at a compromise and added two more 4 hour shifts after explaining that I will be quite down and out for weeks after the surgery I'm having soon.
I also feel resentment that my parents did not plan in any way for sickness or old age care. No health directives. Nothing. I think this was the plan. We will be your problem. And this is your duty. Only thing though is you CHOSE to have children but I did not ask to be born. And certainly did not ask for this burden....
It is just a vicious cycle. I also did not mention that I had a very very ill mother who could not do much for herself for over a decade. Also I only recently freed myself from a very toxic relationship with a person who in many ways had turned me into THEIR caregiver. I was easy prey since growing up in dysfunction prevented me from having boundaries or self-worth. But I got free - and pat on my back have stayed free from that person and some other people who weren't doing me any good- only to be back caretaking my father and pulled into family dynamics I would like to be done with..ugh...In this case just not being able to separate what I truly should be doing and what is fair with the other family members from what is FOG (fear obligation and guilt)...Just thought of that book When the Body Says No. And I think, so far, that is how it will be. Because I can't say No myself .
I know the possibility of your father outliving you is of great concern, but don't let that further stress you, deal with the now and not with what could happen. Tell your sibling that it's time to show up to the party and if they don't want to they need to start arrangements for your father to enter a facility.
Blessing to you and Best of luck
While it's unlikely that there is any particular "cause" for your cancer, it is a fact that the stress does raise our cortisol levels, and this "fight or flight" hormone isn't great for our health when it is constantly getting triggered.
I myself had my first diagnosis of cancer at age 47 following a heartbreaking divorce in which I spent I would say a year absolutely obsessing about would have/could have/what its. I thought at the time, when I came up with a breast cancer that I may have in some way "contributed to it". Nothing of that can ever currently be proven or disproven, but I do think our overall mental health affects our physical health. Recently, have a 35 year history of free and clear, I've had a second cancer in the remaining breast. And am HAPPY, so go figure. I would say that 81 does give you SOME stress but nothing like your own daily routine.
Please take care of yourself. Get this addressed and I wish you at LEAST 35 years before you have to look at anything else distressing. And yes, it is time, to my mind, to have your Dad placed. This is no one's fault. You did your best. There is reason for grief, and you two can mourn it together, but there is no place for guilt in something you didn't cause and cannot fix.
I hope you make a full recovery and can enjoy a long productive future.
Best of luck to you and God bless.
You already know the answer to that question and so do I, so put your big girl/boy panties on and learn one of the shortest but most powerful words...NO. And use it with your sibling or anyone else that wants you to put yourself second to someone else, especially with your now health scare.
You deserve to be as stress free as possible while going through your surgery and any needed treatments in the future, and I know from first hand experience that caregiving is NOT stress-free.
In fact statistics tell us that 40% of caregivers caring for someone with dementia will die from stress related issues before the one they're caring for. I know for a fact and so do you that your father would not want that to happen to you.
So start using that sort and powerful word NO, and understand that no is a complete sentence.
Wishing you complete healing from your cancer and for you learning the word no.
If your family does not support you by relieving you of caregiving , Perhaps your local County Area of Aging can send a social worker to help place your Dad . Call and tell them your situation and that you will not be able to care for Dad .
Regardless , your caregiving days are over , you need to focus on you .
It's not too late to rectify this and tell sibling no you can't do it and dad needs to be placed in a facility.
Sad that dad's life is more important to sibling than your health and your life.
Stress can lead to heart attacks, strokes and even cancer and other health issues.
I hope you are able to survive whatever cancer you have and have a life after caregiving before you die. But you have to choose yourself. Will you?
So yeah, let's see how they do on their own. See how it is without me helping and maybe you all can have an honest talk about how long this in-house care can go on. I am definitely getting closer to saying NO MORE FOR ME at this time.
Thank you for your reply
Our system for caring for the elderly has so many issues and problem. But in this case, where a caregiver like you is diagnosed with cancer, we MUST have a solution to this! You should be able now to fully get out of caregiving and focus on your treatment. We need to have funding for situations like yours, where you need to focus on your health now and there should be funding in this situation to cover your dad's care. Otherwise its just not right.
I’m so sorry that you’re dealing with cancer and wish you a complete recovery. But I’m curious—how do you feel about our health system keeping you alive at all costs? Would you still think it was a broken health system?