All alone.

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I have been taking care of my mom for over two years. My brothers helps very little (they are always too busy to help). Now mom is on hospice. I don't know if she is going to die or not but I am left alone to make all the decisions and I don't have anyone to talk to (my mom is my best friend and my brothers don't like to talk about emotions). I'm alone, tired, and scared and I guess I just needed to say it to someone.

11 Comments

Little, there are many others in your same situation. I'm sorry you're going through this. What are some details about you and your mom? Is she at home in hospice care? Do you live with her and care for her? Stay in touch.
She is at home with me. She can't do anything by herself since her stroke two years ago. Some days she seems to be getting better and other days (like yesterday) she can't be woken up. I lost touch with any friends because I get very little free time. I lost touch with my extended family because my mom and I were my grandma's caregiver for three years and they didn't want to help and slowly drifted off. I used to think I had a large strong family but now I feel like my last family member is dying. I'm not married so it seems like most people feel like I have plenty of time to be a caregiver. What they don't realize is when she is dead I'm truly alone. I'm also constantly afraid I'm going to make a mistake a be the reason mom didn't recover.
Little, You are not alone in this community. My husband and I have been taking care of my mother for 30 years. When I could no longer care for her in my home, I placed her in Assisted Living. She is on Hospice care, too, and is starting the downward spiral. Please keep posting.
Little, I hear you when you say you are afraid something you do or don't do could be the cause of your mom's death. I am often struck by the fact I hold my mother's life in my hands and each of my decisions can have long lasting consequences. Should I make her get up or let her stay in bed? Make her eat dinner or respect that she has no appetite and let her be? If I were evil I could withdraw her meds and discontinue her meals and no one would ever know, they would just assume it was a continuation of her decline. I have a sister but she has abdicated all responsibility to me. In one sense it is good she trusts my judgment, but on the other it is a terrible burden to have to bear alone.
Little75, you are doing a wonderful job, because you ARE THERE with mom, unlike brother. And you are doing the best job you know how to do and that is all anybody could possibly do, so take heart and be proud (some day) and cherish this time with mom. NOBODY can ever take this special time away from you. Mom will definitely pass away, maybe sooner than you think, but the schedule is not up to you at all.
Little75, I know how you feel. My mother doesn't have the support of family or doctors. She has a team of doctors, but they don't seem to really care much. It is all very assembly line. They listen to my input and usually act on it, but then I feel like I'm both the patient and the doctor. I don't know if anyone else ever has that feeling in this day of unstable medicine where doctors come and go so quickly. My mother's doctor changes every year when her old one retires or takes a job somewhere else.

Mostly I don't know what to do. There is no cure for old age. So I make all the decisions in the house from what to eat for dinner to what medical change to recommend to the doctors. No one else seems to care. I would like to find a doctor who actually cared, but I think they are becoming a thing of the past.

This sounds depressing. I guess it is. It would be nice if family and medical people cared more. It would make life easier for caregivers.
Little I am pretty much in the same position you are. I cared for my mother for four years. She's been in a nursing home now for 2.5 years and coming close to the end of her time. When I visited today she would only wake up for a minute, then drift back off to sleep again.

I have no family at all. I lost friends years ago when I moved the 200 miles to care for her and other people you might meet really don't want to know as, not having been there, they just don't understand what you're going through. When your mother passes hopefully you can build a new life for yourself, one that you so totally deserve.
Hospice just told me they give her a week to live I really don't think she is that close to death. I don't know if I'm just holding on or if I'm right. It just feels like the hospice expects to see death so she sees death. I'm preparing for the worst but still hoping for the best.
Do you have any hospice folks coming in? Could you take that time to go out and meet with others? Drop in at a local senior center or something? Begin finding the you who you have had to hide to take care of first Grand ma and now Mom. Hospice can be quick and sometimes slow...but the timing is out of your hands. Enjoy the time you can now but know that we are with you in spirit...
Little, you're not alone in questioning your care - I think that all thoughtful and concerned caregivers also can't help the self queries as to whether we're doing the right thing, whether we missed something, whether we made the right decisions.

I think that's because we're undertaking such an important responsibility, many of us without any medical background. It's natural that we would be concerned if we're making the right decisions. These are uncharted territories for most of us.

As to hospice's advice, I believe they have experience and know what the signs are, whereas we don't necessarily have that insight or ability to make the medical assessment.

I would clear out my schedule to be available to stay with your mother for the next several days. If you do need support, there are many people here who can help you through. The hospice staff may also offer some comfort and guidance.

I would say whatever I wanted to say to your mom, assuming that these might be her last days - tell her how much you love her, how much she's influenced and made your life worthwhile, and make sure that you provide her with the most emotional comfort you can. Make the most of these days and if she does pass, be confident that you've helped her through these days and you both have said the goodbyes you feel are appropriate.

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