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gnagitthruthis7 Asked July 2015

Anyone in this community ever had a caregiver stress related breakdown?

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?

anonymous281963 Jul 2015
Baby steps.

anonymous281963 Jul 2015
Gnagitthruthis: Start by showering daily. Then, make sure your daughter does too.

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gnagitthruthis7 Jul 2015
Thank you all for these comments! Something I very recently did, yesterday in fact, was to call my cousin to ask for help, to let her know we really need it. We've talked about her coming in to help before, but it didn't work out. In a few weeks though, I believe I will have some significant help. She is super competent and experienced with caregiving etc. Nettiem thought i said i was working, I'm not, except in capacity as caregiver, and I am employed through an In Home Service program to care for mom. the hours we are allocated are not sufficient, but I'd rather get a simple part-time job to earn enough to pay my cousin/ another caretaker, than to go through the bureaucracy to be awarded more hours. I've thought about my daughter gong to live with her Dad, she doesn't want to, and I really don't want her to, but I do have to figure something out for her relief. Would love to find a support group for kids dealing with this situation, nothing so far. And yes, perhaps the machine is not a "ventilator", though I heard it referred to as such recently, I always thought it was called a bi-pap machine. She has 24 hour oxygen. The other machine, the doctor prescribed. All in all, listening to you guys, it's like there's not much else I can really do proactively now except follow up on possibly more help and services ( I'm doing, have done or have looked into most of the measures mentioned). All I can do now is wait and do as much as I can for everybody me included.. Everything is a long wait at best SoI'll just shut up and wait and exercise like crazy to try and de-stress. Utilize all the anxiety relief techniques. No sense in me pining for relief, it may or may not come, and to some extent it heightens the anxiety. You're right, I can't afford to break down and they can't afford for me to break down. Im certainly all mom has at this time, and most of what my kid has. i simply have to find the way to ease the strain. Again, thank you all.

Nettiem79 Jul 2015
In CT there is Agency on Aging. They help figurecthongs out and maje sure your loved one is cared for. They do do hpme visits but seems your taking care of her very well so no worries. Title 19 is a state program that pays for homeakers and companions. Specially since you work and have a daughter they will see that you really need that help. I don't know medically what she may qualify . There are nurses I can come in and administer medication. The aide I have for my grandfather does not but we have worked around that and figured it out . whatever state you live in start researching online different agencies theres gotta be help out there for you somewhere. you need it . It seems like we all have been there and all know how you feel. I hope you can find some help. your daughter unfortunately is more important and yourself. you have to put yourself first .funny that I'm saying this because I have to keep reminding myself that my kids need to come first .easier said than done I know

GardenArtist Jul 2015
Just thought of a few other things:

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.

GardenArtist Jul 2015
First, as to the therapy. One of her doctors can prescribe home therapy. An RN generally starts the intake procedure, orders therapy and perhaps a home health aide. While they're visiting and working, you can take a break and relax

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.

calicokat Jul 2015
Yes, me too. I actually ended up scheduled for a memory evaluation myself, but it turned out it wasn't dementia, "just" stress related to care giving for my MIL.

You've received good advice here, try to do what you can to take care of yourself.

Nansacola Jul 2015
Yes, yes, and yes. I started having panic attacks at work. I had to go on Medication to function. A year later, it became obvious that I could no longer work and provide round the clock care. I placed mother in an assisted living facility. I still had to take her medicines and supplies and run her to the doctor, but when I walked out the door, I had me time again.

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.

JessieBelle Jul 2015
gnag, I can certainly understand the way you feel. Most days I feel like I am working all day long, doing little things that don't amount to anything. It is hard to live life for two people. I know it is even harder to live it for three. When the care receiver is doing so well, we realize that this is not going to be over anytime soon. By the time your mother passes, your daughter might be grown and living her own life. I get the feeling that you seriously need someone to step in and take over the day-to-day care issues around the house so that you can work and be a mother to your daughter. Sunnygirl had some excellent advice. You need to look around to see what help your mother qualifies for. You may find that something like adult daycare will take much of the burden off your back and leave you more refreshed. Or maybe bringing in a caregiver would be the answer. Each of our situations is different. Being able to hire a housekeeper would be wonderful for most of us.

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.

Nettiem79 Jul 2015
gnagitthruthis7 - what state are you in? I had to quit my job to helo with my husband's grandfather. His daughter well just wont help so its us ... i was burnout after only a year and a half . I have three kids and was constantly running , was working the 1st year of care , rinning around for kids and grandfather . Dr appts ,cleaning, cleaning up after him ,laundry and cooking . You name it i did it. Anyway we were suffering financially. I had to work . We were able (in CT) to get his grandfather on title 19 since his income was low enough . We have an aide so i can work now. l will be honest, I'm still stressed. Dealing with alzheimer's is hard and on top my husbands family drama makes it so much worse . Long story . However my point is look for state or government aid and go to therapy . I go a few times a month and found this site and its helped me not melt down crying.

Sunnygirl1 Jul 2015
I certainly can relate to some of the things you describe. Being a care giver is so challenging and when you have no other support it can seem overwhelming. I do think that your level of despair is something you should not ignore. It's not fair to you, your daughter or your mom to be constantly overwhelmed. I would certainly find out what your options are for your mom's care and then make a plan of action.

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.

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