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

kmeg, you are facing a heart-wrenching decision. A huge challenge of caregiving can be balancing our lives with the lives of our loved ones. Your life is already filled with responsibilities. I know you want to be there for your mother and make her last days as good as possible. But there is only so much that one person can do.

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.

I just feel I need to be there for her because I know she would be there for me.

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.

Is their any other family members that might be able to give you a break? I just want to commend you for all your doing for your mom. I'm very sorry to hear of her diagonosis. I imagine this is extremely difficult for you. I'm sure you do more then the nurses do because it's your mother, and no one will care for her the way you can and do. I would just suggest to see if your community has any local resources that could help you at no charge considering the circumstances. Do not feel guilty. This all seem to happen fast for you. Most of us Caregivers at least have a chance to get use to all the emotions, and extra work taken on. It sounds like your doing the best you can, and thats all your mom would expect.However if things get way to difficult for you then you should not feel bad if she has to go into a nursing facility where you can still go be with her as much as you can, and still make sure your families needs are met. Best of luck to you. Prayer really can go a long way, and God will never put more on you then he knows your capable of dealing with:))

Kmeg, it sounds from your post like you have a husband and at least one child. You say you have a job and family that you need to tend to. After reading through your whole situation, I have to honestly say that I think you ought to give serious consideration to transferring your mother's care to the "hospice house". You are only one woman, with a limited supply of energy, and you only have two weeks left of your "medical leave." You can't possibly know when your mother will pass on....her hospice period could go on for quite some time. And you need to hang onto your job. Your mother would receive excellent end-of-life care at the hospice house. I feel for you and hope you can get your situation under control.

I have a fiance and he has a child. He does what he can. I don't want him taking away time from his son. The boy needs his father just as much; if not more than I do. He stayed with me the majority of the weekend to at least keep me company and ran to the store and grabbed a few things for me. He's been emotionally supportive and I love him for it.

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.

OK, Kmeg, I understand now....that simplifies your decision....it sounds like the best thing is for your mother to stay in her home. If I were you, I would talk honestly and openly to the hospice professionals and tell them what you have told us. Tell them you need more help, that you are getting too fatigued doing all the bathing and changing and they need to send in an aide more often. Once a patient is nearing the end, oftentimes hospice will assign a nurse to be there for long periods of time (overnight? you can check on this), so that you could get your rest.
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.

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.

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!!

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...

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...