I'm 17 and my mom has terminal cancer. I've been caring for her (alone) for the past two years, and now she probably has weeks, if not days, left. This is hard already, but now she's getting put in a nursing home by surprise (to me). How to handle?
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Her sister/my aunt is her power of attorney and several states away. We're fairly close despite this and she visited a few weeks ago, although for only 4 days. I've kept in tight contact with her especially as my mom declined so rapidly this past week and a half. It's unfortunately been a long time coming, something we've expected for awhile, but I was just glad to have her around for as long as possible. She has vulvar and lung cancer (both terminal) and we believe it's most likely metastasized to the brain. We finally got hospice to come out, and it was a huge help, just the fact that I finally had access to a nurse 24/7 if needed (we've been to the ER 5+ times in the last couple of months) and that they were taking care of sending us her meds, which were becoming increasingly difficult and expensive to get. Literally two days into it (she was admitted to hospice home care Friday, the regular nurse we'd have been seeing and a social worker came out to assess her yesterday) and it's no more. It's apparent the decision has already been made even though I talked extensively with the nurse and social worker about my feelings/take on the situation and addressing what seemed to be their main problem (aside from, understandably, the fact that I'm such a young caregiver) which was getting a hospital bed in the house to make it easier on her and them. I'd made plans to clear out a room with someone tomorrow so one could be delivered. On top of this I had talked at length with my aunt/her POA before and after their visit, and we all seemed to be on the same page that if she lingered for months, I wouldn't be able to care for her at this stage that long and she would need more than I can provide but otherwise, at the moment, it was best for all involved to at least try to keep her at home. So I was taken by complete surprise when they called this morning and the decision to put her in a home this afternoon had been made. I've never been 100% opposed to the idea of a nursing home even though it's absolutely against my mom's will because I understand the hardship and complexities of this situation on both of us, better than anyone else. I just can't believe that it's happening NOW, at what seems to be widely agreed to be THE VERY END. I want my mom to be home and with me if these are her last days. And I really don't want to be bullshitted by these people trying to help (which I know they are) with ridiculously contrite cliches and needlessly careful language even though I understand they probably feel they can't be straight forward and blunt with most people. And I didn't want to feel betrayed by what is my third closest family in a time like this especially since it's really the first time I've felt I've had a "family" family, having grown up with as much contact and as you could normally expect living a thousand miles away from my dad the better part of my life and a thousand miles in the opposite direction of my aunt and all the others. But that's exactly how I feel right now, because of how by surprise this has taken me. I mean, I wasn't relying on my ability to read the situation from their point of views, for the last two days I've talked with them very specifically about this issue. This entire ordeal, I've been riddled with doubt about my decisions/care for her in every aspect because it has been a lot to handle, but for the first time I've finally felt the situation was truly manageable; subject to change and very dynamic, of course, but nonetheless. It's been hard to accept but in some ways it's been less of a weight to know the outcome, instead of constantly floating different ideas/schedules for all these different, incredibly risky surgeries, for which she had a pretty high probability of dying on the operation table - having a specific date set for those surgeries caused me no shortage of anxiety, even though I REALLY wanted it to work out and her be cured. That on top of the facts that the caregiver situation isn't new to me anymore, that the stress of getting around the doctors/abuse laws/pharmacies to have her meds refilled in time was gone (plus the issue of paying for them), and the huge relief of just having a nurse available day or night, whenever we needed one, that could come out to check on her instead of action #1 being and only being "go to the ER". But my feelings aside, I'm fully aware of all the extra care she's needing and that I haven't been trained to do all of it, although I think I've had a gradual enough hands on learning process to grasp most of it pretty well. I don't want her to be miserable or inadequately cared for. If she really isn't being cared for properly, though, I wish someone would tell me how because that's just the way I deal with things. It's hard for me to accept anything without knowing. The issues they were kind enough to raise with me I felt I addressed or were addressing pretty speedily and that in itself is a slap in the face because my efforts there were for nothing. And now, in their explanations (which I can't really argue since the decision is made and I think doing so now would just hurt the situation, I doubt there's any way to revert it) all they cite is "wound care" and "bed turning" which are things I've consulted literally every single nurse/doctor she came in contact with about to make sure I was doing it right and have had responsibility for, for the better part of a year. Yet she's going to die either way and now it's going to be in a way she doesn't feel comfortable with and probably doesn't have the capacity to accept anymore, when I just haven't been convinced it's necessary even though I know they all just want the best for her and me. Of course it would all be easier if they'd just attempted to reason with me beyond stating the concerns they did, hearing my thoughts, and giving their outright agreement and shocking me with this. (For context because this is obviously a big concern and comes up a lot, I've already graduated high school and do have plans for college.)
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Answer:
I am aware that this question was posed a while ago, the situation is likely resolved. I hope that some parts of this may be of help to others. There is no prescription for death, no rights and wrongs. No absolute. What is right for one, would not be right for another. Those of us who consider that we are experienced in dealing with death, must accept that we are not always right. I am deeply sorry that you, and your mother did not get the end which you wanted. I am sorry that the decisions were taken from you. You have, no doubt, received countless explanations as to the Why this happened. I would like to add my thoughts. When we imagine the moment of our own passing, most of us would want the end to be peaceful, to possess a rhythm and a beauty. No drama, a smooth transition from one to the other. Death can be brutal and unpleasant. A bitter end to a life well-lived. And that is what we try and protect people from - rightly or wrongly we want to lessen the prospect of that happening. Arranging a hasty admission to a Nursing Home is one way of trying to achieve that. One way of trying to 'control' the situation, of trying to remove, from the loved ones, some of the burden of providing the more elemental aspects of care. The question remains, In these circumstances, are professionals like me protecting ourselves by overriding the wishes of family members? I like to be in control, in my environment, with my equipment, with policies and procedures designed to support my decision-making. This is my professional 'crutch'. This is how people like me deal with the emotionally challenging situations that we deal with daily. This could, perhaps, be viewed as a means by which we manipulate death to be kinder to us. It doesn't make it right. I am so sorry that it happened to you. Please believe me when I say that your mom would have been content knowing that you were with her, no matter where you were at that time. We cannot choose the time of our passing, some of us are unable to choose the place, but if we were able to choose the person who was with us when we died, we would choose the person who loved us unconditionally. You are that person. Wherever you were, whatever care you were able to give, the fact that you were there would have been the most important factor. The desire to care for your mom in her final days is understandable. But care is not just physical. The greatest care is the care we give with love - a quiet touch, a gentle reminder of happy times, a song which carries reminders. That transcends a physical location. I hope that you and your mom were together when she died. 'With every person who dies, part of us is already in eternity...we should not speak of our love in the past tense. Love is a thing that does not fade in a faithful heart' Anthony of Sourozh
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Other answers
I am very sorry and touched by your situation. Your youth most certainly does play against you in this instance, but I applaud you richly for being so willing and capable with your mother's care. I cared for my mother for several years in a similar situation, but I was in my 50's at the time. At your age I would have been clueless. It seems that the decision to put your mother in a nursing home has been totally removed from you. I realize that my opinion matters not in the least, but I can not refrain from saying that I feel that excluding you was a huge mistake on the part of your relatives. However, it is what it is. One great advantage of nursing home care is that you can be with your mother as much as you choose. And you can take an active part in her care there as long as you do not go against doctor's orders or nursing home policies (which are usually very liberal concerning constructive and cooperative involvement from family members). You will also be able to leave her for a time to tend to your own needs without fear that a crisis will occur without you being informed immediately. My father is currently in a nursing home and has been for 2 1/2 years. They keep me informed of even the slightest change in his circumstances. Yes, I know you would prefer that she be at home. I am not suggesting that hospice was not the best choice. I am simply saying that accepting what we can not change and making it work as well as possible for all concerned is usually more constructive for those we love than expending our energies banging our head against a brick wall. God bless you and your mother.
Barbara Carleton
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