Is there a period where you see yourself "slipping"? I may be there. I often "notice" or become aware that I'm really out of it. Like very hard to concentrate, keep up with details, very poor memory. I tend to go along and "function", I feel very busy, always pushing rushing etc but when I take a look at it, it's like Im just going thru the barest motions, not really productive and missing big, obvious solutions to practical problems. I often feel like "how did I miss that?'. definitely chronic stress, being a sandwich generationer single parent, caring for bedridden mom with really inadequate income. It's a doozy.definitely sleeplessness and anxiety. Possibly beginning to become paranoid, or at least hyper negative.Mom's care is suffering of late, although her lung disease has been "stable" for years.Recently, I've been told she's in need of daily, perhaps multiple times daily physical therapy, and a nighttime ventilator and i swear to God i dunno what energy reserve Im gonna pull that out of. I'm scared to death of getting accused of neglect.Adds to the anxiety considerably. I've been at it for 10 years now, and all the fears and concerns are hitting me ( will I be able to recover financially and get employed to support my daughter? How is all of this affecting her, at 11 she is often depressed and showing signs of self-neglect; what's really going on with mom with encroaching dementia and advanced COPD, even though her vitals are always good, and her lungs always sound?blah blah blah) I walk around with a little smile plastered on my face and all-is-well attitude, but underlying is a swirling stormy sea. Do you feel like a confused rat in a maze just before a breakdown?
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1. It's imperative that you take care of yourself because your daughter and mother are relying on you. And of course you're very important too!
I know that's a heavy burden and seems somewhat like a harsh "slap in the fact", but it's not intended that way. You obviously have a lot of concern and care for your family, and can only implement that by including yourself as the third member of that triad.
2. Over the years my parents and sister both had PT, in rehab and at home. I had PT in outpatient facilities. In almost every situation, therapists provided handouts for continued PT and OT at home once their services terminated. One excellent handout was on energy conservation.
I kept all of these and reread them periodically. The energy conservation points are insightful - it's an excellent reminder that barring emergencies, most tasks don't need to be done at one time.
And during these down times, you can just sit down with your mother and daughter and have family talks. Put everything else aside - seriously. Just enjoy each other's company.
I've had to do this and designate "no work time" because otherwise I became so stressed, including thinking about what I perceived needed to be done that I couldn't do.
So now I break up tasks into smaller tasks and take breaks when I get tired or need to refresh my mind. I know that a lot of women do laundry all at one time - do one load at a time and use the time while the machines are busy working to take a break.
Another tactic is to start with a zero based day planning - put aside all the "I should do" tasks and start with just the basics: What absolutely has to be done NOW, and TODAY?. Finish those, then you've had the satisfaction of meeting your goals and can add additional nonemergency tasks if you want.
I've found I can do more if I follow these principals and don't push myself to do everything at one time. Hopefully that will help you too.
A social worker can also be requested to provide information on what local organizations can help. In our area, the Jewish care organizations provide a wealth of information and services, and not just to Jewish people. .
Second, as to a nighttime "ventilator" - do you mean oxygen, a CPAP? To the best of my knowledge a ventilator isn't something just used at night; it has to be connected by a medical professional and remains in place until the pulmonary and/or other conditions have stabilized to the point it can be removed.
Third, how was it determined that she needs some nighttime respiratory assistance? If some is taking oxygen SAT rates, next step is to take her to a pulmonary physician (the one who's treating her COPD), who can do the necessary testing to determine if she's qualified for overnight oxygen.
Medicare revised its qualification rules, so there are a few hoops to jump through to get it.
4. Coping Skills. Sunnygirl offers good advice on addressing yours and your mother's needs. I don't intent to be contradictory, but I've worked in Juvenile Court and wouldn't recommend that Child Protective Services be involved. Their effectiveness varies by state and jurisdiction, and it might be that someone could overreact and make long term decisions that affect your legal relationship with your daughter.
Do you have any relatives with whom your daughter could stay for a while?
JessieBelle, as always, is right on with her advice as well.
I would start by prioritizing; sit down with a nice cup of tea or lemonade, put on some soothing music, and list what needs to be done, as you've done here in your post. If you feel as though your head is spinning, stop, take a break, do some stretching, look at a magazine that soothes you.
I'm sure many of us have been through that "head spinning" situation in which we can't tell whether we're coming or going. Take comfort in knowing that you're not alone. I jokingly refer to it as having a super colliding superconducter in my brain - when all the elements and anxieties are bombarding and crashing into each other and no clear thoughts can emerge.
Think of one of those go-kart arenas where people get in little cars and drive like crazy - sometimes that's what my brain feels like. And, seriously, that's when a little bit of chocolate helps, even though it's the last thing I should eat in that situation.
So do working puzzles, listening to music, and relaxation techniques. Looking at calendars of animals is also relaxing.
Make a plan to set aside even just 5 minutes per hour, or whatever time you can, to just sit down and relax. Unless there's a medical emergency, that time won't negatively affect your caregiving and likely could improve it.
Nansacola addresses the evolution of caregiving and how eventually sometimes drastic changes must be made. And Nettiem speaks to the burnout. I'm sure others will offer similar advice on their experiences. You're not alone.
The other mental changes you notice aren't unusual, in my opinion and experience. Anxiety is common (you have someone's life in your care), nor is paranoia. During the winter, I fill my car with extra blankets, thermal clothing, wintertime survival gear, all in case the car breaks down with my father who could easily become hypothermic. It's a tremendous relief when the weather changes.
As to your daughter, she needs your assistance too. I'm wondering if there's a school counselor or social worker who might be able to step in without involving a state agency. Is your daughter able to spend time with people her own age - that would at least give her an outlet for discussing her concerns with someone she knows isn't an adult.
Hang in there - you'll get a lot of good advice here.
You've received good advice here, try to do what you can to take care of yourself.
When mother went on Hospice Comfort Care, I was then just a daughter. A huge weight was taken off my shoulders. Mother's passing two weeks ago at 97 has left me sad but relieved that I did the best I could.
Is there anyway you can place her in a nursing home? You and your daughter should come first in your life. Get help now before it is too late.
The first step, though, is finding some financial assistance for your mother. Often you county's Human Resources Dept can help by sending out a social worker that assesses your needs. They know about programs that are available, so can help you locate things you may qualify for.
I do wish there was more help out there for us caregivers. I hope some of the people on the group will talk about things they qualified for, so that we can learn from each other.
I would determine what it would take to get you assistance in the home, if that is where you want to keep your mom. You say that both of your incomes are low. You might see what programs and benefits you might be entitled to. Here are a couple of links about some resources you might check out.
https://www.medicare.gov/Pubs/pdf/10969.pdf
You might check into P.A.C.E. It's a program that helps people who need care in their homes.
http://www.medicare.gov/your-medicare-costs/help-paying-costs/pace/pace.html
You can contact your local department of social services to see what your mom might be entitled to. Some other options may be placement for her in a facility where she can get the therapy she needs. You should not have to pay for this out of pocket if your mom qualifies. Certainly, she qualifies for something, if her fiances are so low.
I would also get counseling for yourself. If you are not at your best, you won't be able to be there for your mom or daughter. See your medical doctor first to make sure there is no medical problem and then get counseling. You can also call a crisis hotline if your stress is too overwhelming.
If your daughter is not being well cared for in the home, you should find someone who can provide that for her immediately. She should not stay in the home if she is not getting all that she needs. If no family member of friend can help you temporarily with that, then contact child protective services and ask them for help. Her welfare comes first and should not be ignored.
I wish you all the best.