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Mom -- 72, lives with me -- was initially diagnosed with Stage 4 metastasized cancer less than two weeks ago. Prognosis of weeks. Total shock. She'd been unwell, but not that unwell... until she just stopped eating and finally let me take her to a doctor after three weeks of ice pops only.


Fast forward, she's in a hospice facility, and I've no clue if she will come home. She says no, they say nothing, and I can't care for her at home anyway. Got a 13 year old here. And that's it. My brother is not going to help care for her in any real way, can't really, and I live with her.


But I can't care for her there either. She expects me every day, won't let them help bathe her - wants me, asks me to bring her stuff each day. She complained to a friend that I seem to have no sense of time, because I don't get there when she wants. I'm a teacher, a public school teacher with a high-need population, and haven't prepared a thing for school yet. And I'm a single parent in a very real way -- kid's dad is in another country. all on me. and she's starting high school, a high pressure, prestigious, high school, one she worked hard to get into, going to be slammed with this right from the get go and all I want to do is be there for my kid... but my mother is dying, right?


Now I went to the docs -- get my own house in order, right? -- and an ekg result didn't come back so hot. Great. Just great. I'm just done. And I'm so pissed off because my mom hadn't seen a doc in 7 years, knew there was something wrong and just... ignored it, left every single thing a hot mess, including a bedroom akin to a hoarder's, papers who knows where, not a penny to her name, all on me.


I am just... done and it has only just started. I feel horrid.

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You were on high alert when she got her unexpected diagnosis and in crisis management mode when she entered hospice care but no one can sustain those high levels of anxiety and performance over the long term, it is time to start thinking long term instead of day by day. You need to step back and let the staff at the hospice do their jobs, give yourself permission to take a day off from visiting or at least keep the contact very brief - 15 minutes? -if you must assuage your guilt and let her know you haven't forgotten her. When my brother was in a hospice facility there were several people who had been there many months, they were still dying but death wasn't necessarily imminent. The good folks at hospice can not predict the day or hour in advance but if something changes they will let you know, it is OK to try to regain a little of your own life.
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liaann12 Aug 2018
Thanks. I am happy to let the hospice people do their jobs. My mom isn't as keen, however. And I have tried to limit, just to get a call wondering where I am. I know it is the disease, but it came on so fast and this is simply heartbreaking.
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I think it would be odd if you didn't feel horrid. There is a lot up in the air and that's always unsettling and stressful. Who's there for you? A sibling? Friend? When people in your life say "What can I do?" tell them what they can do! Stop at the grocery for you, bring you a home cooked meal, stop in and visit your mom to give you a few hours respite. Don't turn down help. When I ask people if there is something I can do, I really mean it. I want to help. So don't feel bad for accepting help.

Your mom's right, she probably won't leave the hospice. But is her bedroom something you have to deal with right now? If it's not, leave it alone. Why borrow stress when you already have enough of it. You can get to it later in your own time.

You have a child, a job, and a mother who is in hospice. Take care of things on your own time table. If your mom expects you at a certain time that isn't convenient for you let her know what time is more convenient for you. You're allowed to do that.

I'm glad you shared with us what's going on. Do whatever you can do to keep your anxiety level down during the time and accept help.
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liaann12 Aug 2018
Thanks. Had to deal with the bedroom because I was told she would return home, and because every possible piece of paper necessary for this was in there. Trust me, I am avoiding anything I can right now! Just no one here but me -- some wonderful friends everywhere but here.
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I am so sorry for your plight right now, I've been there with a couple of my parents who were also diagnosed with Cancer and who were on Hospice in (til) the end, so I understand that it's so incredibly stressful! Have they given you a prognosis, of how much time your Mother might have left to live? I know this is so scary and stressful, its Awful to have to think about these things, but knowing what is to come will help you to manage and prioritize your life.

All very good info above! Is there any way you can take a LEAVE OF ABSENCE from you Job under THE FAMILY CARE LEAVE ACT? I know that I have had to utilize this option several times for our parents care, and my Employer was Extremely Helpful and Patient! When my Mom was actively dying, the Hospice Dr wrote letters to be "out of work" for all of my siblings, to give to our employers. Right now you need to stay strong and healthy for your Daughter and your Mom, so take good care of you 1st!

Your Mom is in a good place, receiving the very best of care, so don't worry too much on that end, visit her when you can, and when things become more imminent, deal with it at that time, and ask for help from family members and friends!

Your Daughter must be your your 1st concern, she has Earned herself an incredible opportunity getting admitted into a Prestigious School, and she needs your Support getting her squared away into High School, Good For Her and You, your obviously a Fantastic Mom! Remember that you baby is just setting out and has her whole life in front of her, and keep your Mom in the loop of her accomplishments, I'm sure that she is So Proud of her too! Thus is the Circle of Life!

Parents can become extremely scared when they are diagnosed with a life limiting disease. She will be extremely needy, and feel that her needs should come first, but she is being well cared for in the Hospice care setting, and there is only so much that you can do, and it sounds like she is still with it, so explain to her that you are stretched thin right now with Back To School efforts, but will be there for her as often as possible.

Be Moms advocate, ask a lot of questions, ask to read her chart notes so you know exactly what's going on when you cannot be there, and try to help her to remain calm. Make sure that you know that she is getting proper meds and pain relief and ask others to visit her there, to relieve you of some of your precious time, and once your Daughter is back into the schedule of school, homework, activities, food and sleep, things will be on a more even keel. Be sure to keep her in the loop about her Grandma, so that she understands exactly what's going on, she's a smart kid, she can handle it, kid's are very resilient when it comes to their elders health realities and see where she can be of help and entertainment for Grandma too, this is a family thing!

Obviously you are going to have find the proper ppwk to keep your Mom's financial house in order, so that if she needs to apply for Medicaid to pay for the Nursing home expenses, you can submit them to the Financial Services Accountant at the nursing home, they will help you with the applications. Make sur you have DPOA for your Mom, both financial and Health Care. Hippa forms, POLST, DNR, all of it needs to be figured out and signed by your MOM, ASAP, if you haven't already! The Hospice Nurse and Social Worker will help you with all of that.

Be sure to Utilize All of her Hospice Care benifits! When my FIL had Hospice care in our home last Fall dying of Lung Cancer, they brought in Aides, bathers, massage therapy, music therapy, Chaplain services, all in addition to her regular Nursing care, so sign up for Everything they offer, even if it's just to give her things to look forward to.

When you have a few moments, put up pix in her room, bring her favorite blanket, movies, music, slippers, flowers, and as many of the comforts of home you can to make her feel comfortable. Ask for help
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liaann12 Aug 2018
Thank you for all this info.
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I'm so sorry to hear of your situation. It must be so overwhelming and exhausting. Plus, you have your own medical concern right now, I'd keep in mind that stressing out and overextending yourself, is not good for health reasons. It hit me hard after doing it for only a few months. It took me a year to recover from the health crisis that I sustained. I'd consider that and how your daughter needs you healthy right now, when setting your priorities.

Of course, you love your mother, but, I agree about using Hospice and letting them do their jobs. Your mom is not mentally able to realize how unreasonable demands may impact you, so, I'd use reason and do what is reasonable. I'd consider that she is scared, but, complying with her demands is not feasible and would still not be enough, no matter how much you did for her. Others can help with her care. I'd insist that she allows it. Your job should be to visit and love, not manual work after you have already worked a long day...PLUS, you have your own medical situation. If you don't set the boundaries, who will?
I hope you can find a good compromise.
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thanks.
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