Advice welcomes - single parent getting a terminal diagnosis and I'm far away
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Anonymous
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My Mom has been battling cancer in one way or another for almost a decade - and managing to do so quite successfully. Unfortunately, it looks like that run of success is ending and she is now looking at a metastatic diagnosis with a prognosis of 3-12 months maximum.
She lives several hundred miles away, and is a widow who lives alone. She has 3 adult kids, none of them local, and I'm the default "responsible" one that she really wants handling everything. (Due to some lifelong family dysfunction I'm also totally built to feel like I have to be responsible for everything - even without anyone else suggesting it.) She has a strong local network of friends, physicians, church, etc... And she and we have the means to ensure she gets excellent care - likely keeping her in her home until the end (which is what she wants). But. While I can make sure I see her regularly in coming months, and talk to her daily, I can't be there for her fully. I can't ensure she's never alone - at least not until we're talking about full-time, live-in nursing care. I can't really coordinate her care well from a distance. I can't abdicate my responsibilities at home (2 elem. age kids) or work for the next X months. And I certainly can't change the prognosis she's facing. I don't know how I'm going to navigate this without constantly feeling torn, guilty, depressed, miserable, stressed, under rested....... I don't know how to allow myself not to do anything and everything I possibly could for her. How do I prioritize my own well-being, or my kids' emotional well-being, potentially ahead of what my mother may need. And my FIL spent last week in the hospital (even farther away in a different direction) and we fear that he is increasingly fragile in ways that don't allow us much time to get to him and see him. So my husband and I may end up juggling who stays home and who is traveling to see a dying parent. I just want to run away and come back when it's over. Which of course I don't really mean, but I am really dreading what is coming, and fearing I'm going to feel like I'm a constant state of crisis or terribly fragile equilibrium until she dies. And that just all feels overwhelming and miserable. I would welcome any advice or suggestions for navigating this. Thanks just for allowing the space to vent a bit. I can't say much of this out loud to anyone other than my therapist and she's away for a few weeks! |
Anonymous
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<3 Oh OP - I am so sorry you and your family are dealing with this.
I don't have any great advice other than please be kind to yourself. You are going to do your best. Sometimes it won't feel like enough. Allow yourself to shift priorities while you and your family deal with this. Maybe sometimes it's ok to put your mother first, and let your kids get a little less for a while - they might not understand today, but they will eventually understand. And if you can't do that then give yourself a break for that, too. I am just so, so sorry. |
Anonymous
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I"m so sorry OP.
AS horrible as it is to type, I think you have to come to an understanding that it's not forever. So, yes, you will probably have some very difficult months. But it will come to an end. It sort of makes me think of the early days of infancy, when you're just in what is really crisis mode and everything is about the baby. It might be a good time to rely on friends and other family, throw money at any problems you can (like from the other two siblings - make them pay for stuff), and just get through it one day at a time. I know you're anxious - understandably so - but letting go of some of that future worry and just staying in the present can help you. |
Anonymous
IME, we all constantly feel torn, guilty, depressed, miserable, stressed, under rested....... during this time of life - no matter if we are in person or across the country. Allow yourself the feelings, but know you are not alone. Take it one hour, one day, one week at a time. Don’t try try to do it all, but do what you can. Anticipating help and bringing in earlier than needed helps. If your mother qualifies for hospice, they can help with the needed equipment like a push chair, a hospital bed, a bed chair.... things like that. They can arrange for someone to come 2-3 times a week to help with baths. ((((Hugs)))) to you and your mother. |
Anonymous
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OP I am so sorry. I hope your mom doesn't feed into the guilt by saying things that rip your heart. Been there. It is so hard and many of us can relate. Therapy helped me do what I could and not feel guilty taking care of myself and my family I created.
Does she qualify for hospice? The people who work at these places are extraordinary and it might be worth it to activate that. Is she on some good meds to stay upbeat? If not, I'd talk to her about it. She might as well be able to enjoy her last months of life and if properly medicated she will be able to appreciate whatever people do to show they care without making them feel bad for not meeting her every expectation. You also may want to consider medication. You have permission to take care of yourself. You have permission to do only what you can handle. You have a right to live your life too. You have a right to show love in ways that feel comfortable to you. You have a right to to set boundaries if she guilt trips you. You matter too. Your health matters too. Your well being matters. |
Anonymous
| OP - we just went thru this during the pandemic. Stage IVB MIL. 1500 miles away. She refused to come back here. And she beat it!! Took 3 rounds of chemo. She had a great friend network who took her to chemo and looked after her. DH was able to visit a couple times too. I pray everything will be fine. There's support groups out there for her, some on FB for specific diagnoses. Don't feel guilt. Just pray and support as best you can. |
Anonymous
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OP, if you can afford it, get in-home care. You might have to contact an agency like Visiting Angels, but they can do all the coordination. Your mom can tell you who she likes and doesn't like, and you coordinate with the agency so that you can get a core group of workers who work well with your mom.
Next, you are doing more than most, plus, while it is overwhelming, as a PP said, this is finite. Which I understand is a good news/bad news thing. But when it is time, the best you can do is the best you can do. That's it. Since you aren't there, and I know your mother doesn't want this, but if her death goes on longer than expected and she becomes incapacitated, then she might need to go into a nursing home. Start doing the research beforehand JUST IN CASE, so that if an emergency arises you aren't in panic mode to find something. The guilt is the worse, and I am there daily. But as someone is dying it is just sad and the only way to truly make them happy is to cure them. And that isn't an option. I remind myself sometimes daily, sometimes I get a break and it's weekly, that it is a phase that just isn't easy. Hugs. |
Anonymous
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I'm so sorry OP, I dread the day I have to go through that with my parents. My dad is battling cancer also, though he is okay for now.p
You mentioned she is far away and that she has a good support system, but is having her move closer to you an option? Maybe with full-time care? I imagine she already has well established relationships with her doctors, but we live in an area that has so many medical facilities, perhaps her doctors can recommend someone in the area for follow up care? Just a thought. |
Anonymous
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OP here. You all are so kind.
Thank you, from the bottom of my heart, for your sympathy, warmth and good advice. |
Anonymous
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Relatec:
I heard piece on npr (maybe All Things Comsidered)... about growing business I’d death doulas. Used to be thought of as wuwu but is becoming mainstream |
Anonymous
Sorry - slight of hand and posted incompletely. OP maybe a death doula could help provide comfort for mom in her final months. |
Anonymous
| One proverb that really helped me put things in perspective when I was going through something similar: You don’t have to set yourself on fire to keep someone else warm. |
Anonymous
| I am so sorry, OP. You are in a painful spot. I’m sorry you are so far from your mom. I’m sorry about her prognosis. Does your job allow you to take administrative leave for family care? Your mother’s clinic likely has social workers, or can put in touch with them. These people will know what care to set up in the home now. Get in touch with them as soon as possible. Bring in a higher level of care than your mom may need at the moment so the care is in place when she needs it. Agree with the PP that you want to get ahead of the crisis/needs. As I read your post, I’m struck by both your love and concern, and also by how clear-headed you are. You also have the funds and a community of friends around your mother to care for her, and well. Besides the social worker and professional care, maybe you could begin organizing this community as a support team. People want to help! You might want to have a firm conversation with your siblings about their contribution. Do not accept this is all in you. You might want to find care or organize your own network of friends to help with your kids or get a meal service in place for your own home so you can have that in place if you have to be away. I’m so sorry your father in law is also declining and in need. And you may need to do all this for him, too. You mention anticipating how difficult this coming year may be. I’m sorry to say that you are likely correct. This is a really, really hard process. And coming off a pandemic makes it even harder. But it’s not your fault, and you will do the best you can. You sound like a lovely, capable, caring person. I truly believe that once you set some wheels in motion, you’ll find your way and set up a good care system for both parents. |
Anonymous
| So sorry, OP! To add to what the PP said, you may want to look into a patient care coordinator or patient advocate. There are professionals who serve as point people to coordinate needs during these times. That way, it’s not all on you, your mom has her care needs met, and when you visit, you are spending time with your mom, not taking care of logistics. One of her friends or someone at her church could also be a point person for meal trains, a visit schedule, transportation, shopping, etc. Also, bring your kids to see her. That’s what she needs most of all. You have the gift of foresight, and resources. Your future self will thank you for setting things up now. Sending you hugs. |
Anonymous
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Op here. We went from bad to worse in the last four days, with my mother having a medical crisis unrelated to the cancer, and ending up in the hospital and ICU.
I have two siblings, both of whom have addiction problems. One of whom, when sober, would be hugely helpful during this time but apparently, she isn’t sober. And now she is with my mother, being of no help, and further complicating the situation for when my mother is released from the hospital tomorrow. The other sibling has never been an option for real support, and at this point my mother doesn’t want either of them around because they create too much stress. All of the dysfunction in my family, from which I have generally managed to keep a healthy distance, is rearing up for a perfect storm of stress. So, i need to reframe my thinking and problem solve as if I were an only child. It is essentially the reality. I’m actively pursuing many of your suggestions, including to find a geriatric care manager who can coordinate locally and work with me and my mom. And I am triaging home and work today so I can go spend several days trying to get things sorted out. Also, the proverb about not setting myself on fire is incredibly apt and I am definitely keeping it in mind! |