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?
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.
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...
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.
The point of hospice is to relieve you of the responsibility and care of your mother. Just open up to them and tell them everything.
I know I'm only one person and only do so much but I'm just afraid of my mother passing in the hospice inpatient facility. That's the one thing she's petrified of and always has been; dying alone. She and I would rather her be in her own home. It just feels like a catch 22 no matter what I do.
Thank you for the support.
I am currently on a family medical leave. I'm allowed 3 months and I've already used about 2 and a half months. Granted this leave protects my job but it won't if I run out of hours. I cannot afford the loss of wages. I just bought a home so I need to work. Unfortunately, the only other family member I have here is my cousin. He's 64 and works from 2pm to midnight. So by the time he gets home he's exhausted and has his own health issues to deal with. I'm normally out of my house from 8am and don't get home until 8pm ... and this is why I'm so torn. Thank you for your input it's appreciated.
Does your work allow for medical leave, or do you think it might jeopardize your job? Could you afford the loss of the wage for a while? Do you have any other family members that could help with her care if she were to remain at home? I don't know how many hours you have that you can spend with your mother. It may be that the hospice home is a good alternative, and you can visit with her there. It may take much of the stress off you.
I know that others will have some good ideas for you. Many of the people on the board balance jobs, families, and caregiving. There is only so much we can do, so often we have to accept the outside help. I am sorry that your mother is having to go through this disease. Bless you for being there for her.