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.
23 Answers
Helpful Newest
First Oldest
First
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.
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.
ADVERTISEMENT
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.
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.
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.
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.
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?
See All Answers