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

Hmmm...have you got some home exercise equipment? Music you could dance to? Even just a Theraband or some five to ten pound weights you could do stuff with in bed until your arms get good and tired. Some people find any kind of physical activity works very well as a mood booster as well as a health builder. And IMHO, a little chocolate (even nonfat hot cocoa if you need to watch your weight) wouldn't hurt either!

Do you like to read that help me when a child and also during my long marriage and after the husband died also getting on a thread here that you can follow-I will give you my connect so you have a person who has been there done that and survieved

I so understand the feeling and I at least get to work 1/2 a day. Unfortunately I don't have any solutions, but sosmetimes it helps to know someone else feels the same way. Make your goal to turn on and use your light everyday. Its a start! Keep posting and visit us again on the Grossed Out Thread

I know how you are feeling, I also am feeling the same way. I have lost most of my friends, my job, my intrest in hobbies and all I want to do is sleep. The only thing that keeps me going is my faith in God that things will get better. If you want we can vent to each other. Take care

goldfbard We all feel your pain. And only people who are in the trenches do. Your friends (if you still have any that bother to call or e-mail more than 1 or 2 a year) who aren't doing this don't understand AT ALL. And after awhile I didnt' even care that I didn't see or hear from them because it was frustrating.. They are all full of "get a hobby" and I was full of "I had to give up my hobbies beause of this" I have one friend who is very sympathetic but even she has drifted. It's only natural that they will. You as a caregiver need 5-10 day warning to get expensive in-home care to go to an effing movie once in a while and everyone else is living a little more spontaneous than that. ( i.e. REAL WORLD). I too resigned from my job, moved into mom's house leaving boyfriend and friends 900 miles away. I want to be positive but as mom's PD progresses, it's going to be only harder for both of us. I love my mom. She's sweet and is paying my upkeep but I still have no life outside this house (except for running quick errands once or twice a week). As an only child who is unmarried and have no kids all I can say is that I hope I die before I get old because aiin't no one going to be there 24/7 for me. Hang in there golfbhard. You are not alone!

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....

Golfbhard, I say good for you for having the courage to say the word "prison". That's what this forum is for. Your spirit should feel better for having uttered the word that reflects the truth of your situation. I was so helped by what Jane said above...she put it into words so well. I would add that it is not a good idea to try to solicit sympathy from people/friends "out there" because it won't be forthcoming, and you'll only feel worse ( selfish) for having brought it up. This is the place to complain in safety. That is something I have finally learned .....to keep my mouth shut out there. As Jane said, they simply CANNOT understand unless they have been in the trenches. It doesn't help when someone says to me: "What do you do with your time?" Yes, I have actually heard that, and it feels depressing, discouraging, and draining to hear that. They think I have all this extra time on my hands, but the fact is I need to use any leftover time to rest and recover and rejuvenate my own energy supplies....so I can take better care of Dad. Because the fact is....the EMOTIONAL drain of this experience takes more out of caregivers than anyone would realize, unless they went through it. It can be exhausting. And the longer it goes on, the toll can build and become more fatiguing. So now to end on a positive note, I say that we are doing good, noble work ( some of the most important work of our lives)....it IS worth it to hang in there....we love our parents.....we need to remember to nurture ourselves when we can. Hang in there, everyone.

Even if you are not forced to stay home every single minute - it can still feel like prison at times because you know you are the one RESPONSIBLE - the one who will get 'the call' from Lifeline, etc. It is how stress is PERCEIVED. I know.

Counting on other family members is a waste of energy. We have to figure this out ourselves and figure out a way to cope.

I bought a Wii unit with an exercise board and have ordered the ABBA You Can Dance Game and can hardly wait for it to come. How can you not smile while dancing along with ABBA? (my personal opinion, of course :0)

Reading is a good escape - but we also need to MOVE or we will rot in our socks. Take care of yourself first or you sure can't help someone else. Hang in there!!!

I also agree that someone who has never been a caregiver CANNOT possibly understand the demands. Unless you have lost a child, you cannot feel that pain either. Unless you have been divorced - we cannot feel what it is like to be rejected. That's how life is. Sadly, we have to experience the situation to understand it. That's what is great about this site. We have all been in each others shoes. This is the most difficult thing I have every endured. We have to dig ourselves out of the 'black hole' often. My MIL doesn't understand why 'I' feel stressed - after all, she takes care of herself!! That's what she tells everyone. Talk about a thankless job! She hasn't paid a bill in 3 years - her meds must be monitored and still she forgets - I take care of her shopping and cleaning. She dresses herself and potty's herself as long as she isn't in the midst of some health crisis. I am grateful for that. Never had a clue what I was in for - not a clue! My parents died when I was in my twenties - they never got old.

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 - 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.

Is your mom mobile at all? Is she able to get outside - even onto the porch or patio into the sunshine and outside? I live on a farm, and I wheel my dad outside to the garden. I have him pick leaves off the things I've gathered; have him hold the eggs and egg basket for me; and I bring the dogs out to him. He loves the outdoors and animals. He sits in his wheelchair and watches me weed the garden. He even "trains" the grapevines through the fencing, picks grapes, and things he can reach. We also sit on the porch or out back and eat our lunch; he throws feed to the chickens and turkeys and birds; he feeds the barn cats. I let him do anything he can to feel like he's helping.

Mind you, this is not every day :) . This is on his good days. He has dementia, COPD, extreme diabetes, and is on dialysis 3 times per week for End Stage Renal Disease. We have Home Health Care for Physical Therapy once a week for him when he's up to it. But even on the days that I can only wheel him onto the front porch for lunch outside is a help. The sunshine and fresh air is AMAZING for depression. I keep my blinds and curtains open as much as possible, and the windows open for fresh air when the weather is nice enough. We also keep music playing on the radio in the living room constantly. I do not watch television until late evening and try to keep him from watching it either. Television is so bad at making you not want to move. I agree with the earlier statements that movement is crucial. I have a "Walking" DVD that is great. You can walk and exercise right in your own living room and it's really good to fight off depression. We read alot, and I do lots of bible study and listen to Christian or Gospel music - it is very uplifting. We listen to classical late in the day. We have a wonderful church, and many members come by and visit and/or send cards, prayers, and phone calls. Maybe you could contact a local congregation to get involved with you and your family. My dad has construction paper pictures and coloring book pages plastered all over his bedroom walls from the children who make pictures and cards for him. He reads them and laughs out loud! And it makes my day, too :)

I must say that it is very taxing on mine and my husband's relationship at times, as well. But I'm very blessed that he is so understanding and helpful. He is letting me take a weekend off in February and keeping my dad for me so I can go visit one of my daughters and my two grandchildren. I haven't even seen their new house, and they've lived there for a year and a half, so I DO know what you're talking about.

I know that's probably not a lot of help, but it's what keeps us going. I've been caring for my father full-time for 5-1/2 years, and I had my step-mom in addition to my father until she passed on from cancer in 2007. If you'd like to contact me, we could keep in touch via email or through this site. Just give me a shout! My name is June and I live in Justin, Texas :)

I DREAM of vacations - most of the time that's as far as it gets. I plan lots of them online. I love to watch travel shows on TV. I know I won't travel until my MIL is gone.

Finding someone to help with mom is next to impossible. Maybe an overnight-er once in a great while. On the other hand - her youngest son has traveled the world! Just got back from Europe (again) He rarely visits her and has NEVER in almost 8 years EVER taken care of his mother or given us a cent towards her care or for respite. OH WELL.

Most of the time we do pretty well. But there are those times when I dream of getting away (running away) - of not having to always think about her needs or worry about her.

More times than I can count I have jumped out of bed with a start in the middle of the night and raced downstairs only to find her sleeping like a baby. I just 'dreamed' I heard her fall or call my name. (we have a baby monitor in our bedroom).

She says 'don't worry about me' - but she doesn't realize that if I didn't and she missed her meds (before I started monitoring them she missed them 2/3 of the time) or failed to eat properly or room piled up - we would be turned in for elder neglect. We didn't realize the responsibility we took on by just saying - 'mom, come live with us.' It is like a giant weight over our heads. I have spent years trying to cheer her up (impossible) to the point that my own health has suffered.

It is like looking at my own future and thinking 'will anyone do this for me?' Do I WANT my kids to have to do this for me? Care giving elicits such extreme emotions. On one hand we feel care, compassion, love - on the other - fear, anger, guilt. So much guilt. Guilt for not doing enough, guilt for wanting a life. Always the guilt.

golfbhard - sorry to go on and on about my own situation. We all have our situations. But try to be as active as you can. Eat well. Take vitamins. This is the hardest thing for me.

But push yourself to take are of yourself. Keep your mind active - reading helps that. When I need some 'mindless activity' I play solitaire on the computer. Do nice things for yourself that don't cost a lot. A warm bath with nice bath salts. Listen to music. Go get your hair done once in a while.

And try to get a break. If your mom is housebound - depending on where you live - there are programs where someone will come in for a few hours a week (3 or 4) and give you a break. Here it is called Senior Companions. My MIL REFUSED to allow anyone to come :0( But, one of these days SOON - she will get those visits because I need the break. The social worker even tried to explain this to her - she wouldn't do it. Sometimes we have to do things for US - despite them. Do whatever you can to get a break or you will break.

Praying for all care givers everywhere!

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.

thank goodness I stumbled onto this site. i am caregiver for aunt who never married or had children. she had every detail of her life planned out except this! i have one cousin who is now her power of attorney but he and i have just had to step into this and take over. i am a widow with no financial resources. my daughter and her husband lived with me but after an intensely stressful 2011 are getting divorced. i was just trying to find a site to ask "what to do when the dementia PD patient doesn't think she needs help and you have literally given up your whole life for them. Feel guilty, Yes! Tired all the time, Yes! Just want to jump in here, thanks!

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!

BEEN THERE - DONE THAT!!!

A good cry, a good laugh (harder to come by) or a GOOD LOUD LONG SCREAM can do wonders for letting tension go. It isn't as bad as it sounds - pardon the pun. :0)

All I can say is if I hear one more person tell me that 'you're doing the right thing and are a good daughter' I may let out that good loud long scream. Because guess what, I'd STILL be a good daughter if my mother went to a facility and I WASN"T doing this. I don't care what all these 'people who mean well' say!

Forgive them - for 'they know not what they do'

They mean well - they just don't have a clue. Neither did we - in our Previous - non care giving life :0)

I have used the word Prison many times too! My husband is an only child and I am the only woman in her life. Her long standing mental illness drove everyone else away. Her 2 nieces say she is their favorite aunt, but they won't even visit her. I think it reminds them that their mothers are gone. I don't know. One thing I have found is that when I let myself sink into feeling locked in a cage with her, I get overwhelmed with my own misery and sadness. I at least can run back to my house and force my husband to deal with her for a few hours. My therapy is being able to watch the sun go down with my dog & cat on the front porch of MY house. It is up on a hill in the country, while hers is in an old neighborhood in town, surrounded by trees & traffic. Cant even see the sunset, that's what I miss most. I have also refused to give up singing in praise groups at church & NHs. It renews me. "God inhabits the praises of His people"! It''s so much trouble to arrange BUT after I go, I feel so fulfilled! The other thing I know I should be doing in exercise! I haven't gotten faithful in this area yet, but am working on it. We have to take care of our spirit & body too! I don't know if you're able to leave her alone, but we decided to leave her alone with her lifeline button. I don't think she will ever push it, though. She has demanded to stay in her home, she wants to die at home . If I am here when it happens, all I can do is hold her hand. Therefore, I've released myself from guilt for not being there every minute. I love her and don't feel cold or heartless, it's just the way it is. God knows you have given everything you have and He loves you! Find your therapy moment, something you can get away and do to refresh yourself. Even if it's just a few (or one) hours. Love & Hugs to you. You still have sunshine inside you!!

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.

I have a friend that I think the world of. She is kind and caring. She listens. I can tell by the look on her face that she hasn't a clue of what I am feeling - not a clue. She spouts euphemisms and says 'she understands.' She doesn't understand. She just doesn't. I don't hate her for it. I didn't understand until I lived it. She won't either. We have to accept people for what they are and TRY to remind ourselves that they are TRYING to - but they just can't understand. The folks here on this site DO understand. They are living what we are living. We can help each other stay sane, stay caring. Take a deep breath and realize we were 'just like them' not so long ago. :0(

Hi Oldcodger,
Your story is exactly like mine. Bird feeder, forgetting stories, COLD and I'm sweating. I can't wait for spring so I can start my vegetable garden again. It's been nice enough here in California to take walks, to clear my mind. Showering is such a job. Once a week if she needs it or not. I won't take her out if her hair is all stringy and dirty. And she talks about other people with straight stringy hair and fat people, which she is all of the above. I hate it. I have a lot of energy, but no outlets. I want to take her to a senior center, but I know she won't go. I would have to lie and tell her we are going somewhere else. She thinks so highly of her 2 sons, but one didn't even come visit for Xmas and he was only half an hour away visiting his son. Her other one came but only stayed half an hour. I think she thinks I'm her enemy. Well, it's time to get into the shower and cry. Take care. All of us here needs to get together. If we only lived closer. :)

What good suggestions to all jhopson, kedwards, jane, anne, oldcodger,suethe quileter, francics, rlp nana, cattails, alivriam and SuzieQ....my name is Suzie also.

This is a great site helps destress. I
I just got out of a 4 day stay at hospital on IV antibiotics for stress related gerd - aspiration pnemuonia. Temp 104.9. They want me (kind of insisting) I have this wrap surgery around esphagus (bad surgery). I'm resisting because I will be in more pain afterwards. I could not take care of mom then.
Gastro told me today to drop 20lbs ASAP. I only weigh 135 but am a beach ball with legs. When stressed (always) my gut bloats up like I have an elephant fetus in there. Then aspriate. Guess where the stress comes from? You all feel it too.
So starting weightwatchers tomorrow. Taking your advise about walking, forcing myself to rejoin my hobbies and take care of myself.
We all seem to have the same issues and stories and can understand each others trials and problems. And you are right - our friends don't understand. My very BFF in the world is going through her husband having stage IV brain cancer and we do lean on each other....albiet she has it worse. He is feeling well and still working, but the threat hanging over them.
I'm going to get out more if I can. Hubby is taking a day off next week so we can go to the Super Bowl festivities (not the weekend of the game) and we are going to get a nurse.
Oldcodger, I too have woke up startled sure I heard my mom calling my name only to find out she was sound asleep.
Yes, SuziQ - the guilt is devestating and we ask "why do we feel guilty" we are the ones that stepped up to the plate.....wish I could figure that one out.

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.

I just have to chime in here and offer my two cents....Please, caregivers, don't feel guilty if you need to place your loved one in a nursing home. I have listened to many stories of people who waited far too long to take this step.....and their mental and physical health suffered terribly. There are no easy answers...you are caring for and loving your parent/in-law when you make arrangements for their care, whatever type of care that is.
This week, a woman was telling me about how her grandmother had threatened to starve herself if certain wishes of hers weren't carried out. The woman knew it would be wrong to do what this grandmother wanted, so although it was hard, she stood firm and did not cave in. And the grandmother did stop eating and died shortly thereafter. But the woman knows to this day that she did what she had to do.