My mother was diagnosed with stage 4 esophageal cancer in April 2019. She’s been through a few different treatments but this latest & last available treatment is no longer working so treatment has stopped and she was put into hospice care a couple of days ago. She moved in with my husband and I in November 2020 and was doing fairly well for the last few months however in the last three weeks she started declining fairly rapidly, especially in the last week. She is now no longer able to do anything for herself. I have been working from home for the last couple of months and that has been working fine until now. Now with all of the care she is requiring, pretty much 24 hours a day seven days a week, I can’t even get my work done from home. It is like having to take care of a newborn baby. I am at my wits end and don’t know how much longer I can do this. My husband helps when he can, but he works outside of the home so he’s gone a lot. My mother and I have always had a somewhat touchy relationship & I find myself getting irritated at her for putting me in this position, even though I know it’s not her fault. To be brutally honest, her death will be a relief to me. I don’t want to see her linger on for months suffering & I physically and mentally cannot do this for months. I know that sounds horrible, but it’s how I feel. My home that was my sanctuary is now a prison that I’m trapped in with no way out. Any comments/advice are appreciated.
I hope by now you've gotten more details about hospice. And, if looking into hospice care is too much to process, perhaps a friend or family member can do the legwork for you?
Please do something kind for yourself. Try a soothing relaxation vid; there are tons of channels like Soothing Relaxation on YouTube.
Thousands rooting for you. Take care.
1 - Hospice care in your home with home health aides to cover most of the hours/days so you can work and also get rest.
2 - Placement into a residential facility under hospice, the staff and additional support for hospice (pain management, additional 1:1 care...) care for your mother. You should be allowed to visit her since she is on hospice.
Also, contact her doctor to see if hospice can be ordered and find out how much help they can provide for her care.
They will help with supplies and equipment.
You would also have a Chaplain, social Worker to talk to as well
Most Hospice have discontinued in home and facility Volunteers.
You would have a Nurse that would visit weekly, more often if needed.
A CNA would visit a few times a week to help bathe mom and order supplies. They are typically at your house for an hour or so but longer if necessary.
You could hire a caregiver to come in and help with mom for a few hours a day every day or even just a few days a week.
The primary goal of Hospice is to keep the patient comfortable, as pain free as possible as well as support and educate the family.
Hospice can approve a hospitalization if it is necessary. But a call to 911 should not be the first call for an emergency Hospice has a 24/7 number and if needed a Nurse will be sent any time day or night. The key is that there can not be treatment FOR the condition that makes a patient eligible for Hospice. For example if mom is on Hospice with a diagnosis of cancer and mom burns her hand and arm when she spills her bowl of soup she can get treatment for the burns but you need to call Hospice and they will approve the treatment.
A great benefit of being on Hospice is that Hospice will provide Respite care. This is covered by Medicare for Hospice patients and their caregiver. This might be just what you need.
If you list the tasks, you might be able to see more easily what can be delegated to paid services and taken off your hands. For example: bed care, transfers, feeding, medications administration, skin integrity checks are the kind of things that spring to mind.
I expect your irritation comes from apprehension and fatigue, more than from any feeling of actual blame that you attach to your dying mother. You must be tired, and you must be constantly - day and night - incredibly tense.
What is hospice doing for her? Are they also being supportive of you?
The kindest thing for both of you sounds like it would be for her to go to a hospice center as I do not believe they will pay for extra help if your mother is on hospice. This way you can grieve your mother dying and spend time with her as her daughter and without the resentment that you are understandably feeling in trying to take care of her and also your responsibilities at home.
I get feeling so overwhelmed and stressed that you just want it to be over so you can get out of a situation you are not able to fully handle. There is nothing wrong needing the help. Dying is not a quick process for many but rather a long and drawn out one as the body is capable of surviving disease and pain for quite some time.
You can't take Mom to the hospital when she is on Hospice. Hospice will discharge her.
Can you get Family Leave from your job? Explain that Mom is on Hospice and your the Caregiver. Or, use Moms money to hire an aide for the time you do ur job. Hospice should be providing one to bathe her. Maybe you can work an aide around her.
If you put Mom in a facility, Medicare does not pay for that facility. They only pay for Hospice Services.
However, you say that treatment has stopped and ‘she is declining fairly rapidly, especially in the last week’. Have you asked Hospice for an estimate of how long this will go on? If your mother has only days left, it may be easier for you to go with it, rather than have a disruptive difficult change. For a short time, taking leave and hiring carers may be a good option.
If your mother is in pain, Hospice should provide adequate morphine to stop the pain. The dose of morphine will not ‘kill her’, but it will reduce her body’s ability to keep fighting. Once that happens, you are probably looking at hours or days left. The very end usually leaves the carer sleepless and exhausted, so try to get enough respite to allow you to sleep. The stage after death needs you to be OK to cope.
My first husband died within hours of the increased morphine dose, which our RN daughter requested after he said to her ‘Is there any way to speed this up?’. I was on the phone repeatedly to our daughters during that last day. I was with my mother when she died 24 hours after her own last dose. Both were cancer deaths, like your mother’s situation. For both of them, the end was a merciful release.
I hope that you can cope, whatever choices you make. Best wishes, Margaret
do you have in home hospice in place?
dying doesn’t mean you have to sit
24/7 bed side.
steel up or give up care.
We all try to do what we feel to be the 'right thing' in situations such as this. What we don't often realize is the amount of work involved in caregiving for someone who is THIS ill. I think it's difficult NOT to feel some resentment for having to give SO much of your time and effort and to know that your mom will not get better as a result of all your hard work. That's the hard truth.
How about hiring some in home help for 4 hours a day to relieve you? That's a good option I think. Or looking into placing mom into a hospice facility where you can go visit her for a couple of hours a day? Would that be an option you can live with?
Wishing you the best of luck with this whole difficult situation. Sending you a hug and a prayer for peace as well.
If your Mom has a terminal illness, her physician can order in-home hospice for her! All it takes is a Dr. order to certify the requirements and it sounds like your Mom definitely qualifies. They will do an evaluation (in-home) and start out several days a week. They are wonderful and will take so much stress off of your plate. Medicare does cover this service and depending on her needs, they will send hospice care staff out to bathe, dress, pain management, and anything else you need to keep Mom comfortable and safe. We use Kindred Hospice and they are angels from heaven! They give us support and guidance as well. This is not an easy time but there is help out there- not sure why, but many doctors don't offer this, you need to call and request it. The evaluation is what qualifies a patient for hospice care. Hospice can be a week, a month or a year depending on the patient and how far along they are in their journey.
As far as providing relief for you, I also worked in center city and was gone at least twelve hours a day. Coming home to a second shift was sometimes debilitating for me. We used a service called Unique Care in Bensalem. We had an aide come out according to Mom's schedule. They would wake her, bathe, dress her, get her meals, and just sit with her for a few hours a day. They ran to the pharmacy to pick up Rx's, and took her to the Dr. when necessary. We scheduled them during Mom's most active time of day. It helped me immensely to know that a certain period of the day I was free from 'duty'. We have been my Mom's caregivers for three years. I try to spend some quality time with my Mom each day, as I never know when it will be her last day here on earth. There is nothing worse than regret.
Good luck with working things out. Please try to line up some of these resources to give you some relief- that is critical to your mental health and well-being!
thinking !
( they are NOT being totally honest with their TRUE MOTIVE.....GREED/GUILT)
Let her go to a facility along with her monthly check.....Deb RN
most of these post are emotional cries for help at moments of weakness. Humans seeking emotional support.
why does management care cost so much?
before the 70’s it wasn’t uncommon for mom or grandma to die at home or in what we call the “er dump” now.
i hope your day is better
1) Nursing home (hospice can still be involved)
2) Bringing aides in, enough to allow you to work (or more)**
3) FMLA
From what you've said, she is likely close to the end. Mercifully I hope that is the case. None of us want to see a LO suffer.
Option 1 might be best, if she needs any specialized care, but the cost of the facility won't be covered. This may be how to get around no hospice facilities in your area (make sure you discuss with hospice and/or Medicare.)
Option 2 would provide her care while you work (or more), and hospice can still be involved, but will also cost a lot for the aides and it can still be disruptive to your ability to work. Aides might need to be upgraded to nurses.
Option 3, if your company offers it, should preserve your job, but allow you to take up to 12 weeks (sadly without pay) to care for a LO. This option depends a lot on how you feel about providing the care and/or your ability to provide the kind of care she might require as she declines. Hospice would still be available, but they don't spend a lot of time helping. Hiring aides can also help you, but still might not be enough for what she needs.
There should be a hospice coordinator - discuss these issues with that person. They may have suggestions or other options.
**thought of this after writing the rest...Would she qualify for Medicaid? If so, Medicaid can pay for some in-home care as well - not likely full-time, but if funds are short, this may help. It likely takes time to get through the application and approval, maybe not enough time left...
The ”ER Dump” is a dark expression of the frustration a caregiver can end up feeling when everything has been tried, nothing works, and options are running out.
You’ve connected with the hospice perspective of End of Life care. Now, do the research needed to find out the actual process of placing her. Whatever you find out, and whatever you decide, the information you get on your options can empower you.
Right now, start thinking about interim relief for yourself. You MAY find that even harder than taking care of your mother, but in some cases, and this may be one, caregiving chips away at your life to such an extent that you can begin to feel as though you’ll never get yourself back. You don’t owe that to anyone. You must keep some of yourself to offer what you can to someone else.
So your mother has been ordered hospice. You should contact the doctor that ordered hospice care and tell him/her that you can not care for your mother at home, and that you need her to have hospice care provided at a nursing home facility.
I am glad you are brutally honest. I think so few people are able to be. I wish I saw more of it. When my brother died in hospice care at age 85, facing down as he was a diagnosis (a sentence?) of Lewy's dementia, I was nothing much but relieved for him, and I was so thankful that he never had to make that long journey he so feared and I feared for him. He was the best man I ever had in my life; he was ALWAYS there for me. Do I miss him every day. Sure I do. But that's just me being selfish. For him, his torment and fear is gone, and I will ever be so incredibly thankful for that.
Please be honest with them. You cannot go on doing the impossible. Let them know that. Let them know you will take what actions you must to see that she gets the care now she deserves, and that you cannot possibly give her now due to your own limitations.
I am so incredibly sorry for all you BOTH are going through. My heart goes out to you.
Also as your mom gets closer to dying, you can have her transferred to the hospice facility,(if you want to)where they will take on her care 24/7 and keep her comfortable until she dies. Stay strong, and just remember that you're only human, so cut yourself some slack. It's all going to work out. You're doing a great job.