Any ideas how to cope with feeling like your in prison while caregiving?

Yeah, my mom can take care of her potty needs and dress herself most of the time too. But everything else my husband and I must care for. We have no help from family. My brother, we discovered a handful of years ago, was misusing her money and we had to take it away from him so he hates our guts....and well I don't care to speak to him more than is essential. Mom has lived with us for 8 years. She hasn't been able to speak or write in 8 years. She can only read a sentence or two at a time. Thankfully she has a good attitude most of the time. We have a caregiver come in for 4 hours a week. And thus far we have another who can stay with her while we get away for a couple weeks in the summer and maybe 4 overnights the rest of the year to go visit our grandbabies. But you know....we are STILL in a very real way tied to our house on a very short leash. It is suffocating at a times. Always listening for the sound of her falling. When away always listening for the phone call from Lifeline or a caregiver. And even when you can get away on vacation always always cringing at the thought that any moment the phone will ring and that will be it. And always knowing that literally in a heartbeat you can all be in a truly dangerous situation that will plunge you into far worse situations. It's all so hard to struggle with when at the very same time we are feeling all of this, we love her very much and are glad we can do this job. Yep, you just can't understand it until you have walked it! I do find that having music going helps. And sometimes just to step outside and take a few deep breaths! don't watch teary movies. Find ways to laugh. And if I didn't have my gardening and quilting I'd be nutty as fruitcake!

Hi, golfbhard. It's absolutely true that people who aren't doing this don't get it. There is no way they COULD get it. I watched my cousin go through this with her MIL, and THOUGHT I "got it." I was no where close. Now that I am doing it, I understand how much I missed, and how impossible it is for others to understand. SO one piece of advice is to ket go of being mad at them. It's like you are speaking another language now, and they can't keep up. It doesn't mean they don't still care about you. Take care to keep the doors open to them, for when the time comes that your caregiving burdens lessen (and they will, eventually). No use in being mad over something no one could understand without living it.
I have found that reading really helps. Whether it's escapist novels or "useful" stuff about caring for the elderly, it helps to get my mind off things. It has also helped me to have two four hour periods a week where I am not on deck...where my mind can quit listening for is he okay, what might he need. SO it's good your daughters can spell you some, and that you know of a service, even at $22/hr, that can do that.
ALso...you probably ARE tired. Instead of being mad at yourself for wanting to sleep, try just sleeping, no judgment. It's exhausting, on all levels.
Finally -- and this will sound like hocus pocus but whatever...it works... try saying to yourself: "No one can use someone else's energy. I can't help my (Mom) by giving her mine. She can't be helped by me taking on her energy. (NOW TAKE A DEEP BREATH) I gently give back all her energy I have taken on, and take back my energy from her, and restore us both to our rightful selves, right now." I think you'll be surprised by the wooosh of energy you feel come back into your own body.
You AREN'T alone. everything you are feeling is normal. Part of what's hard about this journey is we all think there is something wrong with us, something we aren't doing "right" or "enough," etc. It's not true. We are doing the best we can. Sending love and light....

Hi - sorry to hear that you are having such a difficult time. It is not easy, not fun, and sometimes not rewarding to care for a parent. My mom with dementia (early to middle stage of Alzheimer's) lives with me and my family. I am the sole caregiver, as hubby won't assist with her care, nor go out of his way to give me even a "I know this has got be tough for you" speech of support. So since we have to spend down Mom's money as we look to the future for more involved care, I use some of that money to have a friend of mine come over once a week for a couple of hours. She takes my mom to the library, to the mall, or just works with her on the computer. When we went away for a weekend (my husband, son and I) she came in each day and made sure she had lunch, and kept her company for a couple of hours. If money is the issue, find some old gold or silver jewelry and cash it in for money to pay for a caregiver. If you have any collectibles or stuff around the house you can sell, take it to an auction house or consign it to someone on ebay. My mom has a gold necklace that I know will be put to good use one day as being my escape from the clutches of caregiving. It will provide $ to have someone come in and give me break. If you are clinically depresssed, please go see someone. Get on some meds. I don't think I could survive or do what I do in caring for my mom if I was not on some anit-depressant. Good luck and feel free to vent when you want.

What you are doing is incredibly difficult. It is even more difficult than dealing with a 2 year old who has tantrums. But the reality is, you are doing it and you have to find a way to bring joy into your life. Start with using the light daily. Then, pick a FEW things you used to love. Start with one a week until you have something that brings you joy. I knit so I can listen to my Mother and not feel useless, for example. I also read aloud the chapter books I enjoyed as a child to my Mother. We both feel good about that. Last of all, I have started gardening again while someone stays with my mother for a little while. It makes me feel like I am helping rather than being tied down. I hope you can make a life for yourself. PS Try to find something you and your mother can laugh about even if it is silly dancing to music your mother once loved, music you love, or both. Best wishes. You are being a gift to someone.

Yes, it does feel like prison sometimes. I can go out to do some shopping and leave her by herself. She just sits and does her find word puzzle. We don't talk much because I don't know what to talk about. We watch a lot of TV. I worry about what am I going to do when she dies and I have to find work. I'll be 58 next month. I've had her for a year. I haven't worked for 3 years and I don't know if I can remember what I use to do. She helps us out financially. So it will be hard to make ends meet. I know I need to find a hobby or something. Guess I'm depressed. I don't hear from family or friends much either. So reading everyone else letters here helps. Sometimes I feel like I'm getting dementia. Do any of you? She loves to take car rides, but gas is so expensive. She's so negative too and I hate to hear it. She confuses stories or adds to them out of the blue. I guess I shouldn't correct her, but how will she know? Is that wrong?

SuzieQ - you aren't alone. If we aren't very careful - we end up with the same problems and ailments that our aging parents have. Depression, forgetfulness, stress related diseases and loss of interest in family and friends and life in general.

That's why it is so good to have site like this - so we can be informed and hear what others have done to help themselves and their loved ones. To know we are doing our best and we aren't crazy. To help us overcome our guilt because we can't make our loved ones happy. They have lost too much.

My MIL has just this last year started forgetting her old stories and adding to them. It is worrisome. Yes, it is natural to want to 'correct' them - but it is fruitless and frustrating. So, I leave the room. I know it isn't the solution - but it is better than arguing with someone who isn't capable anymore. She just can't help it. She thinks her memory is just fine. MOST of our older ones aren't trying to drive us crazy. (I realize that some of you are dealing with mean spirited people - but, thankfully, I am not)

Depending on what you did prior to care giving - maybe take a brush up class at the Jr. College near you. Some of them can be taken online. Read a good book - something funny, maybe. TV is a brain killer. Be careful - it is so easy to fall into that pattern. (been there - done that :0). My MIL is very negative too. It comes with losing everything that is important - her health, her husband, her home, her friends, her independence. I understand why she is depressed - but it really doesn't help that much to understand. It is still hard to deal with every day, day after day.

Wintertime is the worst. We are cooped up and can't even get outside. Now that is is in her late 80's - she is so cold all the time. So, even in nicer weather - if it isn't at least 80 degrees outside - she won't even venture out and sit on her swing. At least I can go outside once the weather warms up. My flower garden and pond are my 'refuge' and my 'escape.'

Even if you aren't a gardener - plant some flowers in pots in the Spring. Buy some indoor plants and care for them - learn about them. Maybe ask your parent to help you water them. Most of the time, I have to water them or they will die. She just doesn't have much interest. She enjoys looking at them though. We also have a bird feeder near a window so that she can watch the birds. Everything helps a little bit.

Do what you can and don't neglect yourself. Even if it is just a few minutes for a shower or bath. Listen to some pleasant music. Try to exercise a little. Eat well. Take vitamins. Try to stay connected with friends. It is hard though - they get tired of hearing us complain :0(

Hang in there - we understand. IF ONLY WISHES CAME TRUE. :0)

My husband and I are retired and living in Washington state. My father suffered a major stroke and now lives with us. He needs 24/7 assistance with all personal care and meals, etc. I went to our "Senior Information and Assistance" office and spoke with the person in charge of helping caregivers. I was hoping to get involved in a caregiver support group. The long and the short of it is, I was able to qualify for 30 hours of in home care and the cost to me will be 70 cents per hour. This was a very unexpected surprise, but it is possible because I am over 60 years of age, my father's primary care giver, and I have no personal income. My husband has an income and my father has social security only. This is not connected to medicaid, as I am the one who is qualifying, based on my income, for the support. I do believe you have to be over 60 years old to get this type of help. As you said, at $23.00 per hour, it is hard to afford in home care. We would not be able to pay for 30 hours per month so this is a God-send. Maybe your state has something similar. Good luck from a fellow prisoner.

Well, there is one other thing I do on really really bad days. A good old primal scream will let off some pressure. "Ah, okay, that's out, now I can go on." :-) Yes, I'm serious!.....whatever helps! When you're driving down the road, no one can hear you. For that matter, with people in the other side of the house and you are screaming into a waded up towel, no one hears.
We went through a two year period with no break from caring for my mom. Hubby was having to save up every day of his vacation and sick leave time for recovery from a later hip replacement surgery, followed 6 weeks later with knee surgery. And both of those surgeries were out of town. During that two years both our children met their future spouses and married. We were largely cut off of the opportunity to get to know our future daughters-in-law and be as involved in the weddings as we would like. Also during that time is when our relationship with my skunk brother fell apart. And then during that time we were given the diagnoses of moms aortic valve stenosis and made the decision she was not a candidate for surgery. Horrible 3 year period there! Oh yes....we ALL understand the feeling like we are in prison, it will never end, we are alone, the guilt, the anger. You don't like to hear that others are also struggling/suffering (let's be honest!). And yet, my gosh it helps to hear other people voice your same feelings to know that you are NOT some horrible individual for feeling all of this but actually quite human. And to hear the testimony of others that we CAN get to the other side!

Have you looked in to Respite Services from your local hospital? If there is a hospital near you, it is more than likely that they have a home health department that can help you. Give them a call. I know when I had my dad home Medicare paid for Respite Care-there was also a program provided by the state for caregivers-they provided a small amount of money for the care giver and provided care for the person a few hours each week.Look into state programs-call your state's Council on Aging. The VA is also another resource for help, so is your local Social Services. They too have programs-things you may not be aware of. Do you have an adult day care or a senior center near you that perhaps mom could go to one day a week? What about your church-if you have one perhaps there is someone there who can come stay with your parent for a few hours. The Episcopal church for example, has a Stephen Ministry-volunteers that come to the home of invalids/caregivers to give support, time away, etc. There is help out there. It takes hard work to find it, but it is out there. Don't get trapped into the spiral cycle. Before you know it you start feeling like a prisoner, like life doesn't matter and that all there is to life is taking care of one person forever amen. Been there. It will swallow you up and destroy your relationships. Tell your husband and your kids to start looking for you. There is a way out. Life does matter-particularly yours. You have to be an advocate for your own life, not just that of your parent. I wish you the best. Believe me I have cried a bucket of tears thinking that my life was going down the shute. I realized after some very black days though that the only one who can fix the black hole syndrome, was me. And I did. I hope you will too. I mean to encourage you. You may have to take some happy meds for awhile-or if not, force yourself out of bed and into an old loved hobby. Small steps can save the day and your sanity. Get up and get dressed in something that makes you feel pretty. Fix your hair. Read funny stuff. Pray. Journal even if for five minutes-small steps that say you matter. I figured out that the best way to take care of my parents and their myriads of needs is to take care of me! And I take care of me by finding every resource that can help me do what I do best-care. Do you know that great music (not sad songs) can change the atmosphere in your home? Or that coloring with crayons and a color book can get you in touch with your creative self? Stay away from the TV. It is a passive aggressive assualt on your brain and your mood! It wastes your time Before you know it your are curled up in bed with 6 pounds of potatoes a box of hankies and twenty extra pounds for company. If you only have a ten minute breather, take it outside. Of if your outside is a noisy street, go in the bathroom, lock the door and soak your feet in the tub. No body bothers you when you are in the bathroom, lol! I am just saying, take time for you and take care of you, however you find to do it. It is lesson number one of caregiving.

golfbhard - OH MY GOODNESS - you absolutely MUST take steps to help YOURSELF. Drink lots of water. Elevate your bed. Research natural remedies online and try a few. Digestive enzymes work wonders. Try Gluten free for a while. It really helps with bloat.

Something that I do every once in a while - if you have one near you - is go to a massage school for a massage. They do a wonderful job and cost half the price. Another way is sign up for Groupon or Living Social deals - if they have that in your city and they often have massages and spa deals for a fraction of the cost. I have done those too. WE DESERVE IT! Don't feel guilty for doing it either.

You absolutely MUST find something to enjoy and help you relax. Try to avoid surgery, if possible. Do something ASAP to zap your stress or it will literally eat you alive. Keep us posted. We are rooting for you. Ask yourself if you mother would want you to die for her. If she loves you and has her right mind - you know her answer. Sometimes we just can't keep our promises.

That reminds me of something that happened 40 years ago. When I was 23 years old (and had a 3 year old and a nursing infant) - my mother had a stroke and was in a nursing home. I begged my husband to go and get her (in another state). We did. We brought her home with us. It lasted 3 weeks. I lost 14 lbs. (got down to 95 lbs). I was up day and night. My poor mom didn't know night from day and felt like she had to use the commode 24/7. She was paralyzed on one side. She could still talk.

There were no services back then. No internet. No sites like this for support. It was the worst 3 weeks of my life. I had to give up or die.

She still had her mind and I talked with her and explained that I just couldn't do what I promised her I would do. It was killing me. She said she understood. It broke my heart but we took her back. She said she would rather be dead than back there - but she knew she had to go. She died 3 weeks later.

For MANY years I felt so guilty and felt like I had killed her. I think that is why I told my husband I would care for his mom now - to try and do for her what I was not able to do for my own mother back then.

But, I can see the day coming when I may have to give up again to save my own life. A person can only do so much with NO help or respite. My hubby does what he can - helps around the house and does what he can do. He just isn't comfortable helping his mom with her personal needs.

The thought of it is tormenting me. I go in and out of despair. Wanting to do the right thing and feeling 'trapped' by it. I know you all have felt the same.

But, in reality, whose fault is it? Is it anyone's fault when one person cannot do it ALL? When the rest of the family won't help at all, or,for many you, you have no one else to call on? It really isn't anyone's FAULT. We are only human. We can only do so much.

Right now I am still a thoughtful, caring person who loves her MIL. I have my visits to the 'black hole of despair' every so often - but manage to come out of it and continue on. When her condition deteriorates to the point that physically and mentally I can no longer cope or I am no longer a GOOD caregiver - I will stop being her caregiver. No one deserves to be looked after by someone who no longer cares.

When we can't do it the right way we should stop doing it. My two cents.

Sorry guys - didn't mean to give you my phyche 101 class.