Follow
Share

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 think you need in facility hospice now, which is rarely done today. This is going to need a lot of care; I am familiar with this particular cancer. This is not for you to try at home without 24/7 care in my humble opinion. I think if you are refused this, or if it doesn't exist you may now have to resort to the ER dump and a Skilled Nursing facility with hospice being the last resort. I would speak with Hospice and tell them that there is no way that you can go on with this; that you cannot supply this 24/7 care, and you will do what you must do to remedy this if they cannot help you.
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.
Helpful Answer (9)
Reply to AlvaDeer
Report
lhargrave Jan 17, 2021
What is an ER dump? We took her to the ER on two different occasions last week because she was doing so poorly, but they sent her home after a few hours both times. I’ve been looking for in facility hospices here, but only know of one & not sure what the qualifications are. All I know for sure is that this can’t go on like this.
(1)
Report
See 3 more replies
In a situation like this, you may be thinking that if you do the research for “residential hospices” you are somehow doing something devious or unfair for your mother, and of course, that is not really so.

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.
Helpful Answer (8)
Reply to AnnReid
Report

We’re here to listen. Vent away.
Helpful Answer (7)
Reply to cxmoody
Report

It's probably time to hire some outside help(using mom's money) to come help you, especially during the day, so you can work, without being interrupted. I'm glad hospice is involved, but as you're learning, 99.9% of mom's care, still falls on you. It is hard and challenging to care for someone in your home, especially when their health is failing so like your mom's, but with the proper help in place it can be done. Start doing your homework on home health agencies in your area, and you can even ask the hospice nurse if they recommend anyone. It's important that you get some outside help in place now, so you can get some relief, and enjoy whatever time you have left with your mom. You don't want your last memories with her, being stressed and irritated.

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.
Helpful Answer (6)
Reply to funkygrandma59
Report

My dad died this past summer at home on hospice care. At the start we used volunteer help from friends and family to help sit with him, but that became quickly unmanageable when his care needs grew. I hired, with his money, extra help for an evening shift daily. It was a lifesaver. No one person can do all that’s needed at the end part of hospice care, it’s not just one job, there are many. Just coordinating the meds and giving them on a schedule is very time consuming. I found the extra help through the hospice company, the ladies weren’t employed by hospice, but were people known to them as experienced and good with end of life care. Please get extra help, and I wish you all peace
Helpful Answer (6)
Reply to Daughterof1930
Report

This is burnout. If your mother has any savings at all now is the time to use it to hire caregivers to be with her - you don't want your memories of this time to be dominated by feelings of animosity.
Helpful Answer (5)
Reply to cwillie
Report

lhargrave - just reread you original post, so I deleted what I previously wrote.

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.
Helpful Answer (5)
Reply to polarbear
Report

What you're saying about feeling relief once your mother passes is not horrible.........it's honest. Who wants to be in a position to watch a loved one suffer? To be ravaged with cancer and be helpless to do anything to help? I feel your pain and I'm sorry for the suffering YOU are feeling along with your mother.

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.
Helpful Answer (5)
Reply to lealonnie1
Report

I always heard that in home hospice is mainly the family providing the care with hospice kind of just checking in a few times a week. It is just as difficult as it would be if she wasn't on hospice and you were providing her care since you are assuming practically all of the caregiver duties.

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.
Helpful Answer (4)
Reply to Jesse12
Report

What are you having to do for your mother?

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?
Helpful Answer (3)
Reply to Countrymouse
Report

See All Answers
Ask a Question
Subscribe to
Our Newsletter