brokenwtfe Asked January 2012

New to caregiving; How to cope with being my mother's caregiver

Follow
Share

My mother (Age 61) was diagnosed 9 months ago with End Stage 4 Ovarian/Peritoneal cancer. In the past month the disease has completely taken over; she's part of Hospice (in her home) and I feel I shouldn't leave her. She's basically bed ridden and can't do much. I've been the one bathing her, changing her, giving her her medications, feeding her... I feel I do more than the nurses.

I'm 27; I still have a job and family that I need to tend to; and my mother needs 24/7 care. I feel I'm being selfish and I'm upset with myself about that. I'm trying to avoid putting her in a Hospice house. That's the one thing she doesn't want. I'm just torn and don't know what to do. How do I get through this?

This question has been closed for answers. Ask a New Question.
16

Answers

Show:
NancyH Jan 2012
Thanks Jane for the info. I thought maybe there was screening available, but it's usually breast cancer that we hear about most. My neighbor and friend died in 2009 of ovarian cancer. I used to come sit with her every Wednesday, while her hubby went to a Bible study. I always made her laugh, and she appreciated the diversion. She suffered terrible the last 2 weeks of her life, but her husband had friends from church, and Hospice to help him get through it. He recently married a gal with 7 sons!! Our backyards are only separated by a fence, so I can hear little kids running and hollering around his yard every so often. His wife is probably having a good laugh about that! She was a wonderful Godly woman, and I miss her.
Helpful Answer (1)
Report

JaneB Jan 2012
There IS a screening process for Ovarian Cancer -- and ALL women should get it. By the time women experience the symptoms, the cancer is usually very far advanced. It's a simple blood test that takes 90 seconds, real time, to do. You can find out more here: http://www.ovarian.org/.
Helpful Answer (0)
Report

brokenwtfe Jan 2012
Luckily (knock on wood) I was adopted... It's sad; my mother was diagnosed 9 months ago and 2 months after that her sister (my aunt) was diagnosed with Brain and Lung cancer which has now spread to her liver, kidneys and stomach. Ontop my cousin being diagnosed with Pancreatic cancer... My mother's side of the family has a large history of cancer. Not sure how much more my family can handle.
Helpful Answer (0)
Report

NancyH Jan 2012
Kmeg, when this terrible thing is all over and the dust settles, please talk to your doctor to see if there's a screening process with ovarian cancer like there is for breast cancer to make sure you don't fall prey like your mom and grandma did.
Helpful Answer (0)
Report

brokenwtfe Jan 2012
I might have to contact the Hospice Social Worker to see if they can set up the inpatient care. Thank you all for your suggestions and support.
Helpful Answer (0)
Report

JaneB Jan 2012
Kmeg, ask the hospice people for their best guess about how close your Mom is to the end of life in this body. They will have an educated perspective on this. AND...in the hospice home, there is always someone with her, always someone able to make her feel more comfortable. You will be allowed access 24/7. They will make sure you (and her cousin) are called when the time is near, so she will not die alone. So often, it's the SENSE of "home" and loving people around them that people want at the end. Hospice homes do not feel at all like hospitals; they are not cold and clinical. REACH OUT TO THE HOSPICE SOCIAL WORKER -- the hospice help is there for YOU as well as your Mom.
Finally, I just watched a friend go through the last months with her Mom. She used up all her out-of-work time before her Mom was out of time. SO ask the hospice people what timeframe they would expect from their experience. They will not volunteer this, unless they are asked. Your Mom can be surrounded by love and care and a peaceful atmosphere (can even take comforters, etc, -- anything from her room at home that makes her happier) and be cared for with love and grace at the hospice house. I am positive of it.
Helpful Answer (1)
Report

anne123 Jan 2012
Kmeg, it does sound from your description like your mother is nearing the end. You are being pulled from two different directions ( your need to go to work, your mother's need to be at home) and something is going to have to give. If you arrive at a decision with the hospice people, this will help you to explain to your mother that "this is what we're going to need to do, Mom." You can tell her that hospice is recommending moving her to the hospice house, or whatever. I am sorry you are going through this. I have noticed that the stress level increases a lot toward the very end, certainly for the caregivers and sometimes for the patient. Listen to your gut and do what you think is best. Hang in there.....and God bless...
Helpful Answer (1)
Report

brokenwtfe Jan 2012
I have explained to Hospice the situation and they've suggested I request more Family Medical Leave. What they don't understand is that there are bills to pay. The leave I'm on is unpaid.

They had a nurse come 24/7 last week but then my mother asked if they could leave for a day. She wanted time with just me and my cousin. She felt uncomfortable with the nurse in the house so we asked them to leave for the day. What we didn't realize is that by doing that they closed her case and didn't have a nurse come back until I called to request one. They also told me that the 24/7 care can only last for so long; (maybe 20 days) then the primary nurse would only come once a week. I guess if this is the case then I won't have any other option and will have to put her in a Hospice facility.

Each day just seems like it's going to be the last and that's why I don't want to leave her. She hasn't been eating, drinking very little, sleeping the majority of the day, no bowel movements, urinating once a day, vomitting, breaking out in sweats throughout the day, extremely weak, always in pain, constantly saying she's seeing her mother (who passed away with the same disease) and can barely gather enough strength to sit up; so I'm just afraid that if and when I leave to go home to get rest something's going to happen. If something were to happen I'd feel 20x worse because I wasn't there...
Helpful Answer (0)
Report

vstefans Jan 2012
Where we are, inpatient hospice let family stay all the time. They had a day bed to sleep on and a fridge and microwave in each room and if was a really nice environment. My mom had that fear of dying alone too but at least there, we were able to make sure someone was with her all the time. Hubby covered a couple fo times when I was at work and fer favorite grandkid came in and spent time more than once too. She had been in a facility (skiled nursing) until her condition (vascular dementia, strokes, really bad heart) got too severe for them to be comfortable taking care of her, and it was further away where if something happened suddenly it could have been possible none of us could get there. If we could have managed Mom at our home I think that would have been best overall though. I'm just saying if you end up having to use a hospice facility instead of home-based, it may not be the bad thing your mom is really afraid of. I don't know how much Mom understood, but when the facility sent her to the hospice I explained that it was a different kind of hospital (her last hospital stay was very hard on all of of us and there was not a good reason to go back for another one as they had maxed out what they could do) and she decided she liked it there. May God bless and give you a little rest and a little peace, plus a little quality time to share and remember!!
Helpful Answer (2)
Report

jeannegibbs Jan 2012
My heart goes out to you. What a stressful situation you are in. Please go easy on yourself. You feel what you feel and there is no need to add guilt to the mix.

Here is what one Hospice organization says about their mission: "The health care team attends to practical needs such as insurance coverage, transportation, and assistance with bathing in addition to emotional and spiritual needs such as caregiver stress, grief, and fear of dying. Care is provided by an interdisciplinary team including the physician, psychologist, nurse, social worker, chaplain, pharmacist, nursing assistant, volunteers, nutritionist, and physical therapist." Please find out exactly what your organization is equipped to provide in the home and make sure you are utilizing it fully. Also talk to the hospice staff about other resources available to you, to lighten your load.

I know what you mean about feeling you need to be there 24/7, not wanting your mother to die alone. But it is likely you will have some warning as your mother's body starts shutting down, and you can be sure you are there around the clock for those last days, even if you have to (for example) return to work and be away several hours a day before then.

No one can say how much time is left to your mother, but you know it is limited. This is not something that will go on for years. On the one hand, each week must seem like an eternity with all you have to do and all the stress involved. On the other hand, each week is one less week you have with your mother, and in that sense you'd like them to be longer. But there is no way to speed them up or slow them down. Take them as they come. Do your best. Make sure your mother knows she has your love whether you are physically with her or not each minute. You are doing amazing work, walking with your mother on this last leg of her life journey. Don't be upset with yourself.
Helpful Answer (2)
Report

This question has been closed for answers. Ask a New Question.

Related
Articles

Related
Questions