How can I handle despair when I feel I'm living in prison as caregiver of 2 bedridden parents and no help from family?

Oh my. Where to start? bookworm84, I am so glad you decided to post here. If there is an emergency in your emotional life, dial 911 and ask to be taken to a hospital -- and while you are waiting, come here and post! We care!

You feel like you are in a prison because you are in a prison. So congratulate yourself on being perceptive. You are not delusional. You are not just feeling sorry for yourself and exaggerating. Your situation really is excessively tough. Your situation is worthy of a ten-minute cry now and then!

But the good news is that you can change your situation. You don't have to remain in prison the rest of your life or even the rest of your parents' lives. You do have options. After taking care of your mother for 23 years that is no doubt hard to believe, but it is true.

That your mother has Alzheimer's is NOT YOUR FAULT. That your father had a stroke is NOT YOUR FAULT. That your parents abused you and you had such an awful childhood you can't stand to remember it is NOT YOUR FAULT. You did nothing to deserve this prison that you are in! That may be a small comfort, but it is good starting point for change. Accept and believe that this is not your fault and you do not deserve the life you are living.

You love those little babies that love you. Watching them grow up and making sure they have loving nurturing is a great reason not to kill yourself. Carry their pictures. And let them remind you of all the other reasons you don't even know about yet. Perhaps your current life does not seem worth living. But once you begin to make changes in your current life, what lies ahead? There may be some really great things out there for you, things you haven't experienced yet, and things that are definitely worth the pain of sticking it out and making some changes. Hang in there, Karen my friend! I am so glad that your are seeing a therapist. I'm so glad you found a support group, locally and online. These things won't make it easy, but they can help make it possible.

There are lots and lots of issues here, and over the next weeks and months we can discuss them and you can get lots of input from lots of people who have enough experience to empathize with you and enough distance to be objective. Come here often and feel the love!

Let me start with a couple issues in your thread -- not the most important, maybe, just a few details.

1. Give up all those bitter feelings toward your brother. They are perfectly understandable, but I think they are misplaced, and they aren't helping your migranes any. If it was very unfair for him to get the financial reward of the land and you to get the prison you are in, blame the party who did the unfair thing. Who gave him the land? That is who to blame for that injustice. Brother has options about how to live his life and how to relate to his parents. Try not to resent that he chose options that kept him out of the prison you are in. He, too, was raised in a highly dysfunctional family. That it was dysfunctional was not his fault. It is perfectly understandable that you feel bitterness and rage. I'm just suggesting that your brother and his family are probably not the most suitable targets for those feelings.

2. The other small issue I'll comment on for now is about taking antidepressants. If your therapist thinks that there may be something to help you approach the tough work of changing your situation in a more stable frame of mind, at least consider it carefully. And as for addiction, so what? What if you did take such a medication the rest of your life? I am going to take insulin the rest of my life. I wish that weren't true, but it is the current reality so I deal with it. After a head injury my husband's psychiatrist put him on an antidepressant, and said that is his brain may never return to the right chemical balance on its own and he might need to take something for the rest of his life. That was almost 20 years ago. Hubby still takes a drug to help his brain to function as it should, and will for the rest of his life, just as I'll take insulin. If you need it, be glad it is available. There are no gold stars for toughing it out on your own. Most people do get off of antidepressants after a while, especially if their life situation improves. But in worst case scenario, what would be the big deal if you continue to need them? Whether a drug would be right for you or not I sure can't say. But if professionals who know your health history and your current situation urge you to try a drug, I'd say listen to them closely. It sure is a better alternative than suicide!

Dear Karen, you don't deserve the prison you are in. Like Lisa, you can make changes in your life to get the chance at happiness you deserve. It will be a tough journey and it may take a long time. Take us with you! We care!

FYI, I have changed my name and avatar after mom's passing. I struggled to write under bookworm. This is like a new start with a new situation.

I think this thread needs to be finalized. It's been 9 months. A lot has happened since then.
1. My older brother increased my monthly allowance so that I can hire a caregiver to babysit my parents.

2. My oldest brother has started paying for our power bill (even if each month we get a 72hour disconnection notice.

3. My 21 year old niece comes on Sunday mornings so that I can have some me-time.

4. My father has progressively become senile. He still has anger within. And he's now going thru the poopy stage. He also can't remember a lot of words now - he forgets the word "banana" or sees 2 elephants on the TV and asked if they were monkeys. He has gained a lot weight since last year.

5. In March 19th of this year, my mom passed away in her sleep. I want to thank all the posters here who read my words and warned me that mom was close to the end. It gave me time to alert my 4 siblings in the states so that 3 of them arrived back home to say their goodbyes to mom. She should have been buried 9 days after but because it was holy week - the priests do NO work this week. No baptisms. No weddings. No funerals. Mom was finally buried on 03April at the veteran's cemetary here on island.

6. The paid caregiver came today. She was shocked how father was not so angry as before. I have overheard him tell another caregiver that he's ready to go. She didn't understand but I did. We will see. Father is Very Afraid of Dying. We shall see....

I'm fine. Very tired all the time. I'm finally now going on YouTube to watch more of Teepa Snow's videos on dementia. Since father and I get angry a lot, I finally gave in to watching it as several people here on AC recommended it. They had watched it and swears that it helped them deal with the situation better. Just the 3 videos that I watched lastnight, I see that I have been doing a lot of no-no and that is why father is so rebellious and accusing me of treating him like a child. Because I am! I will re-watch those videos again.

Now, I have concluded this thread. The next time i will update this is when father ever meets his end. Or if I do....

Bookworm: I'm so happy you started your own thread. Please give serious thought to what Jeanne has said. Read her post several times and when you are feeling really down, read it again.

You are a wonderful person and there is much happiness awaiting you. I believe that completely. You are deserving and worthwhile. Sometimes you have to make changes to find that happiness.

I don't want to overwhelm you, but I am wondering about placing your mom in a nursing home. There are a few elephants in the room here that haven't been mentioned so let's bring them up. It doesn't mean you have to do anything tomorrow, but let's talk about it.

You need to have your own life and guard your health. Is it possible for you to live on your own elsewhere? The care of your parents is too much for you on a full time, live in basis. It is not fair that you have this on your shoulders.

We all do our best to help our parents, but there comes a time when it's more than we can handle. Things change, the circumstance become more and more difficult. There is no shame in saying, "The time has come when I can no longer do this with out jeopardizing my physical and emotional health." You don't need the approval from others to make this statement or to move forward in making the necessary changes.

Personally, I am at that point right now in the care of my father and will be taking steps to place him in a nursing home. My situation is different than yours, but my point is that it is up to me to say when. I don't feel happy with the idea of my dad being in a nursing home, but I know that I need to have a life too.

My guess is there is a lot of family pressure to keep your parents at home. Nevertheless, it's not your job to take on the responsibility of their desires. Your responsibility is to your own well being.

Please do call 911 if you are feeling hopeless and thinking of taking your own life. As Jeanne said, post here while you wait for them to arrive. You have a future. It will be much happier than your past.

A step at a time. We will be here for you.

Love and Hugs, Cattails

Hi Karen. You are getting advice from two of the wisest people I've "met" on this site. And what they are telling you seems right on to me.

Sometimes, a family has to hear that a caregiver is totally desperate in order to be willing to step in. Because they see their elder(s) being cared for, it seems like a "done" item on the to do list. They don't see beyond it. It's not their fault -- it's just how people are. TELLING them you are cracking and need help -- you, not the parents, but you -- to continue is maybe going to feel like a hard thing to do, but could also be so liberating. I know you read Lisa's thread -- remember how it turned out everyone knew how hateful that woman was, and wanted to help? You may find more help than you predicted. I bet you do.
It's great you are getting counseling. And it's great that you had a crying jag -- being a little freaked by it made you reach out to get help. And already the advice you've gotten above is stellar.
I always think of crying like weather -- a storm passes through, the air gets clearer, and the next weather system moves in. It could be stormy for a while, but that's okay. It WILL clear.
Hang in there.

You can say that the system stinks. It wasn't so very long ago that women were considered to not know anything -- or worse -- in most places in the world. That has changed dramatically in many places, including the US. That it is better elsewhere doesn't do you much good, but it is evidence that change is possible.

So, men own land and women marry men who own land. And how were you supposed to marry when your life has consisted of working and taking care of Mother? Even within your own culture, Father has not treated you fairly. You should have been busy looking for a husband, moving out, and living on your husband's land.

But it looks like you have figured out ways to get around the system. Father only listens to male opinions? Get a male relative to express your opinion! You are a smart lady. It would be a real shame to deprive the world of your potential.

Having POA would only give you another layer of responsibility -- another bar in your prison.

Life is not fair. But it can be good. You can't change your whole culture single-handedly. You can't make life be fair. But you can (and will) improve your own life. Don't give up.

I hope that your deck of encouragement cards gets so thick you'll have to divide it and keep some home and some in your purse!

You really seem to be doing well! I'm pleased for you.

Your therapist can explain what he means by All or Nothing thinking, but usually that refers to thinking that one extreme must be true or the other extreme must be true, and not considering anything in-between. Since most things in life fall between two extremes this All or Nothing approach misses out on a lot!

Here is all-or-nothing thinking: My husband has dementia and other disabilities. We can't take the kind of vacations we used to love. So we'll sit home and feel sorry for ourselves. Here is look-at-the-options-inbetween thinking: We can't have the same kind of vacations we used to take, but with help we can still enjoy more limited travelling. This is my own situation. Before dementia the two of us went on a wonderful cruise to Tahiti. Next week the two of us plus a daughter to help are going on a short cruise around Lake Michigan. We can't have it "all" but I refuse to settle for "nothing."

A real common example is people trying some self-improvement activity, like a weight-loss plan. The all-or-nothing approach is, "I really blew it eating that donut this morning, so I might as well not even try staying on the plan today." A more moderate view is, "Well, it looks like I'm not making 100% of my goals today, but I'll get back on track and I can at least make 50%."

Other all-or-nothing statements
My brother isn't a saint so he must be a devil.
I'm either perfect or I'm worthless.
I either take care of my parent or I take care of me.
I either accept all of my religious training 100% or I am a hopeless heretic.
If I can't get into my first choice of colleges I'm not going to college at all.
I can't handle the expert slopes anymore so I am going to give up skiing.
I don't have time/energy to clean the entire house today, so I won't even get started.
I can't get to the gym today so I'm not going to exercise at all.

I don't know what the particular all-or-nothing spots are in your life, but I'm glad that your therapist thinks you are doing well.

And if you can't do all of your therapy homework every week, take satisfaction in what you can do. It isn't all or nothing! :)

Family will either step up right away or never. Sadly, I'm stuck with the "never" type. Stop waiting for help because it isn't coming.

I used to be a patient, kind, understanding and loving person inside and out. Now my exterior is a mask of patience and understanding. The love is still there, that is why it all hurts so much, but my understanding is gone and my compassion is worn almost right out. Inside me I feel a growing resentment. I resent the entire familiy for abandoning their (mother, grandmother in her time of illness and for leaving all of her care up to me. I now also resent my mother in law (who I care for). Its wrong, and I am ashamed of feeling this way, but it is the truth and the people who should be reading and absorbing all of the comments will never do so and these words will never resonate with the "free" people.

I plan my "escape" in my mind but know that finances and life situation will never allow me to make it reality. I have acted in my own life to ensure that I will never become such a burden to my two sons as I age. I NEVER EVER want to have a family member change my excrement filled diaper....I have had to do this over the years and it is difficult and humiliating for both parties on many levels.

Part of the depression is expecting family members to get involved and assist - you really do expect them to give a toss and it is quite startling when you finally realize they don't want any part in caring for "nana, grandma, mom". Secretly everyone is looking at you like "whew! better you than me!!"..

I run on autopilot every day- I don't go out, I work full time Monday to Friday with PSW support during the day while I work to make enough money to keep us fed. Then I am on duty from the moment I get home until I get to go to work for a rest the next day. Kiss a full night's sleep good bye. Haven't had more than 3 hours sleep in a row for well over 2 years. You sleep with one eye open - especially if you are dealing with any form of demential, senility, or cognitive stroke issues.
When things get to be too much I go out to the garage and cry, scream, yell - it gives temorary relief.
I salute all family care givers all over the globe. Its the hardest job anyone will ever have.

And if you think that no one understands what you are going through - the guilt, the anger, the resentment, the emotional roller coaster, the exhaustion, and the never ending stress - just know that me - a lonely lady in northern ontario UNDERSTANDS and loves you and thanks you and appreciates all that you do for your loved one.

Bookworm: I want to add a couple of things that you posted on Lisa's thread. They maybe helpful to others who read your thread here.

One thing is that you live in Guam. I was doing some research on line and it seems like Medicaid is available for those who live in Guam. There may be some restrictions, but it needs to be checked into. Do a google search for Medicaid in Guam and see what you can find. I found that Guam Memorial Hospital does have a skilled nursing home facility and that they do take Medicaid. There are also several in home care groups that will provide in home care and accept Medicaid.

Do your parents receive Social Security? If they could qualify for Medicaid, it would be helpful in paying the cost of in home care or nursing home costs.

The other thing I wanted to mention: You said that your sister takes care of your parents during the day, while you are at work. Are you close to her? Does she understand how you feel?

Also, the group that has offered you counseling may be connected to your local Area on Aging office and should also be able to tell you if more services, at no cost to you, are available to help with your parents care.

I'm going to call you Karen in the future. Take care.

Love and Hugs, Cattails

Medicaid recipients are mostly those in Federal housing and Food stamp programs. Because we land rich, and my dad's retirement + my current paycheck goes beyond the Medicaid requirement. We don't qualify. We had tried for food stamps and was rejected. If you were to drop by our home and inspected what food we have, it's very little. Sometimes dinner would be just one small can of tuna, with 3 pieces of chicken nugget each, Lots of rice (to fill us up) and throw in some veggies. That's dinner. It's part of life - when you're a middle income family, you don't qualify for much. FYI, most clinics on Guam will not accept you if you have Medicaid. Clinics and pharmacies have a very difficult time collecting payment.

My parents have Medicare. With several nursing programs, Medicare will only cover several weeks of visits and that's it. It's not a continuous thing. The nurse does a home-visit and check the patient's vital stats.

Now with regards to my family, I have told them straight my research on suicide. I recently told them that I'm having a depression and I have formulated a very detailed plan on committing suicide. Nothing. And this leads to my morning wake-up today.

I woke up this morning but it wasn't as bad as yesterday. I still didn't want to get up but did. As I sat up, I thought, "Nobody cares. Boss will be back from vacation on Friday, this is a good day to do IT." Fortunately, I read Jeanne's and cat's comments yesterday. Because I recalled your words of encouragement to me. And said, they cared. And the therapist did say that he will help me to say No. And remembered Cat's words - A step at a time. So, I'm going to take it one step at a time.

In the weekend I went and purchased some index cards. It will be my encouragement cards. For every encouragement/advice from you and therapist will be written down. I feel down or sad, I will reach in my purse and pull it out. Sometimes, with depression, the emotions overwhelms you and you just CAN'T see any way out because your drowning with the NOW.

Do you know what's my favorite saying? Go with the flow. If life knocks you down, you just have to get up so that it can knock you down again. (For me, it means life will ALWAYS be a struggle and you just have to get up and not lie down & give up.)

By the way, Jeanne, you are somewhat right about my brother. I will always believe that he should have stepped up to the plate and do his part. On Guam, our culture, the oldest boy takes over. Hence, the free land. Like my father told me, the house/land we're living on, will go to my other 2 brothers. You (meaning me) will marry a man with land. My brother is currently using our front yard to park all their cars, and our corner plot to park their broken cars. So, when my parents die, dear brother of next door will fight for this house/land. The Chamorro custom is that the land goes to the boys. Girls marry the men with land. Another reason why my dad will not give me POA. It would have to be a male. As a female, I know Nothing. "Don't talk like you know anything. You don't." I tell him mom needs to go to the hospital, he won't listen. I have to sneakily call my 16 yr old nephew to "drop by and just look at grandma. Then say, Grandpa, grandma doesn't look good. I think you should take her to the hospital." Guess what, we call 911 and mom goes to the hospital. Well... what can I say?