[myonlyjoy]

I'm 23, but have been taking care of my mom since I was 15. Over the years, especially the past 3 years, my responsibilities have just gotten more and more demanding. She has extremely debilitating arthritis, colitis, and lymphodema that keeps her at home 24/7. She has only left the house once in 8 months. On top of that, she's very depressed because of these circumstances and cries all the time. To be honest, I'm tired of hearing her cry and hearing about how depressed and in pain she is. What about me?

I've had depression and anxiety problems since I was 13. I feel like I've lost my teenage years to that. Now, I feel like I'm losing my 20's to caregiving. I've never had a job, never been to college, don't have friends or a life, etc. The only other person I talk to on a regular basis is my fiancé, but he lives out of state at the moment. I don't even have a driver's license right now, so I can't go anywhere that isn't within walking distance. I've tried seeing therapists, but I can't afford it anymore and all the ones covered by my insurance are too far away.

What's worse is that there's nobody to help me take care of my mom. My dad is in prison for life and all my extended family lives across the country and hardly ever checks up on us. Our neighbors help us a little by taking care of our lawn and taking me to the grocery store every once in awhile, but that's it. It's mostly just my mom and me.

I'm just so exhausted and angry/resentful/bitter. I don't sleep well anymore, because she wakes me up a lot to get her food or whatever else she needs. I've got BPD, so I don't cope well and turn to alcohol, OTC drugs, self-harm, and food to soothe myself. I've gained some weight recently because of all the stress.

She's mentally sound. There's nothing wrong with her other than being physically diabled. She's not even sick enough to be in the hospital or a nursing home (not like I'd put her there anyway). She has in-home nursing care, but they aren't here very often. We can't afford to have extensive nursing care or anything either.

Nobody ever asks me how I'm doing. Nobody asks me if I've cut myself again, if I'm still fighting off urges to get wasted. Even other caregivers that I've met never ask me if I'm okay. It's always questions about how my mom is doing, how I can be helping her even more, etc. The most advice I've gotten is stuff like 'try to get some exercise' or 'take a relaxing bath'. I don't have time for that. I don't have the energy for that. I just want a break. I just want to be able to sleep for a full night, wake up and not have to worry about feeding anyone but myself, not have to worry about running errands when I'm exhausted.

I'm tired of putting myelf on the back burner. I'm tired of having to smell feces all the time because of her colitis. I'm tired of always being on high alert, worrying if she's going to fall again (she's fallen 2x in the past month), worrying is she's going to fall while I'm away at the store or something. I'm just tired and angry and nothing will ever change.

[Travelinglady]

Yes, I agree that you are definitely "too young to be a caregiver." I am sorry you are having to deal with these circumstances. You do deserve to be able to have a life of your own.

I suggest you talk to a social services agency about the situation and find out what resources might be available. Maybe you can check around to see if someone will be willing to stay with your mother at a reduced price. You might also see about getting into a mental health clinic at a sliding scale (you pay only what you can afford.) I hope these suggestions will be a start, anyway.

[yellowted]

is there no way you can offer lodgings to someone in exchange for a few hours and one night a week of care so you can get a break, ok it is not a long one but a short break each day and a good night sleep once in a while really makes a difference.

talking to your doctor may help as they may know of what support/care is available and may even be able to refer you/your mum.

when my partner was ill and i was his only carer, i bought two very cheap pay as you go mobile phones so if he fell whilst i was out he always had the phone in his pocket to call me for help and i had the other tucked in my bra on vibrate and ring so i could not mistake it for someone elses ringing. it worked really well.

your mum can not expect you to be there 24/7 caring for her, you are young and need a life of your own. is there no way you can get a few hours to yourself during the day by getting her sorted in the morning, handing her lunch and leaving extra drinks etc by her chair/bed and then telling her you are going out for a break and will be back at .... in time to sort her out before supper time. start by leaving her for an hour, then gradually extend the time you are out. even if you only go to a neighbours and rest on their sofa it will be a break in a different environment for a while.

your mum is very lucky to have such a devoted person looking after her but if you continue as you are you will break and need looking after yourself, and who will do that? someone once said to me you have to look after yourself to be able to look after someone else or there will be two people needing looking after.
do not feel guilty by taking 'me time' your mum will be fine, she is capable of being patient and of waiting , so allow her to do these things, explain to her you need a rest and she is only to call you if she really needs you. put the things you usually are requested to get by her so it limits the calls to the essentials like loo trips.

[myonlyjoy]

Thank you for your support and suggestions.

As this has been going on for awhile, I've looked into the things that have been suggested already. There really are no resources available for us.

I called around to a lot of in-home nursing services in my area earlier this year, but we simply can't afford any of them and none have sliding scale options. We also have discussed our situation with the nurses that come over 2x/week, thinking they might know of some places that could refer us to help or provide us with something, but they were unable to find us any extra help.

The phone idea is a good one that we actually started doing not too long ago. So far, we haven't had to use it, but it takes away some of the worry for me.

I guess you could consider it a break, because I do get some "me time" around noon, because she tends to sleep during the day for 1-2 hours. I'm unable to leave the house though, because I don't have a driver's license at the moment and my neighbors all work, so our schedules don't really sync up very well.

[liveforfish]

Talk to her home health care agency about getting respite care. Respite care offers you a break to go away and get some space.

Life has dealt you a sucky hand.

[Rose76]

It sounds to me like she very well may be at a level of disability to qualify for nursing home placement. If not, then she must have some self-care capacity that should let you have some more time to yourself. Possibly her depression is the most disabling condition that she has.

I'm glad you have a fiance. Do you plan to continue living with your mom after you get married? You might want to start looking into how you could arrange to not have that happen. If your mother is mentally competent ( even if she is very depressed,) it does not have to be your responsibility to "put" her in a nursing home, or wherever. She needs to decide how to arrange for her own needs. She will not bother doing that, if she totally doesn't have to because you have covered all the bases.

You've been doing this for too long. You can say "enough." It will probably require you to live elsewhere to escape being overly depended upon. That's hard to do when you haven't been able to focus much on your own development with respect to education and employment. Now is the time to start. You are still young, but you won't always be. If marriage and moving out are not on the horizon yet for real soon, then do something else to distance yourself. Like, get into a vocational training program. Let your mom know that she will have to arrange how to meet her care needs while you are in school. If she finds that a big imposition, then she doesn't care much about what becomes of you in life. To deserve a daughter's love, a mom needs to have a mother's heart.

[goldiemom]

I am a disabled mom, and I know it is hard for your mom to do things, but neither you, nor my son, are responsible for taking care of these things. If you do it, it is a nice and good thing to do at times, if there is an end date for it or some kind of suitable arrangement such as pay or whatever is appropriate.

What you might try doing for a start is deciding on a schedule, maybe you are going to be gone Saturday evening and Sunday daytime for example. And maybe some alone time on a Wednesday night for a few hours, she can maybe watch tv in her room, which is what I do, or use my computer. I try to give major privacy, the house is yours. You have to be good on your end and actually go somewhere or do something, or she has to.

This will give you both something new to talk about. Even just going to the library or for a walk can help alot. You can join a group maybe, pick up a hobby, something to meet people and get together over besides the usual bad things.

There are alarms like first alert I think you can get that your mom can push if she falls or anything else happens, she can fall even if you are there. You cannot be expected to be there to catch any possible fall. As for body smells, I would tell her. She can do some things to help that.

Its very easy to get lazy when you are disabled and let yourself go. This only makes you sicker and it burns out all the people who are good enough to help you. If you don't work, I would definitely try to get a job, where you can take more control of your life and have some money and possible career direction, or go to school. If worse comes to worse, find a place to be your chill out place away from home, like a diner, macdonalds or a friends house. A wireless place is good if you have a phone, laptop or tablet.

Creating your own apartment within the house, say if you can put a door to block off a hallway, so you have your own little living room and bedroom and can shut the door, this can help. You are still close by, but you don't have to be "right there" all the time, and you can have a place to bring a friend or decorate as you wish.

Your mom should look into one of those alarms like life alert, I think medicare would even pay for it. My mom is a type one diabetic who had a stroke and she is living alone with one of those alarms and she is doing well. She is the happiest I've heard her, a little bored sometimes, but more alert and happy overall.

Oh, and if you have a friend in the neighborhood you could room with maybe, you could visit mom daily.

Your life is there waiting for you full of great things, you might not see it right now. You have a journey to take through life and it doesn't mean you don't stop off at mom's frequently and call alot, but you have to take that journey yourself. And I don't think your mom in her heart would want you not to reach your potential and be the cause of your problems and ruined life. That's alot to put on her. You can only change what you take responsibility for. You can only be responsible for you and making your wishes known.

Please don't hurt yourself! Your mom doesn't deserve that. She may be leaning on you now and kind of being a little self-involved due to illness, but she doesn't deserve that, even if right now it seems she can't bear to be apart from you and fatigued, I have liver disease and the fatigue is horrible. She is probably scared, as we all are, of being so sick and losing any time with you, but you aren't you if you are doing such bad things, and she will get better with some time alone, seeing she can do some things and seeing you get better, that's the best gift and medicine. I have dogs, they make me get up and let them out. It makes me move and care for something else besides dwelling on myself and helps me to let go of my older sons, who need to be on their own now.

Mom's want to see their kids doing well, able to take care of themselves and sober and as healthy as can be, then they can stop worrying and try to get themselves well. Its hard for us to stop, it is such a strong instinctive role. My dogs really help. New kids. My sister has a granddaughter and that helps her to let go of her adult kids.