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


I've been helping to take care of mom with Alzheimer since I was age 23. I'm now 46. Mom is bedridden, unresponsive, oxygen, trache and feeding tube patient. Dad had a stroke last year and is very demanding and progressively becoming senile. I've spoke to family how heavy they are when I change their pampers. I weigh only 96 lbs and both parents are 100 lbs and 150 lbs. I tell family of my health issues (high risk of heart attack). I think my endometriosis is back. Go figure, I have to have the Painful Endo. I've had 2 major surgies on my endo - 4 and 5 yrs ago.

I was Googling last week Sunday trying to find what other caregivers are experiencing and how I can benefit from it. Of course, this was triggered when I attended my 1st group therapy of caregivers and actually liked it.

Since my dad's stroke and I now have 2 bedridden patients, I find myself becoming bitter,resentful and hateful towards my brother, his wife and 3 grown children just living right next door to us. Dad gave that land free to my brother. He built his house and a 2 story duplex building. You would think they would show gratitude and help me with them. Nope.

Also last year, I started to Google on how to commit suicide that wasn't painful. I analyzed each suggestions. This year, I found the perfect way to commit suicide. Then, the caregiver respite program contacted me (thru my father when he was caregiver). The recommended I attend group therapy and a one-to-one therapy. I was shocked when they asked me for "the plan." I only came upon "the plan" just this month. I truly think that although I've turned my back to God (not blaming him for these problems - that was Adam and Eve's fault), He has not turned his back with me. I'm mad at God because as a Creator of all things, I was born - and I grew up in a Very Dysfunctional family and still living in misery. Our childhood was so bad, my younger sisters & I have no memory of it. Therapist believes we were sexually abused. I told therapist upfront that I don't want to remember my childhood. If I do, I will walk out of my parents' lives. No if, ands or buts.

I'm so angry and resentful all the time. I'm getting migraine headaches all the time that I pop an Excedrin every day one or 2 pills. I'm so exhausted that I can barely stand and change their pampers and clean the trache at 830pm. I get up constantly through out the night to suction mom's trache or she chokes on the phlegm.

I used to say in despair and anger that I will be forever taking care of the parents. I said this to the therapist. He said it's not forever. Sooner or later, they will die. And I piped, "or me!" He just stared at me, and then said, "and you." At the end of the session, he tells me, "Karen, you will not commit suicide....If there's an emergency, please call 911 and ask them to take you to the hospital." I didn't respond. So he repeated, "If there's an emergency, please call 911..." So, I reluctantly agreed. This was last week Wednesday.

I woke up this morning not wanting to get up. Went to the restroom, and I thought that my life is a prison. And I started crying. I didn't even know I was crying for 10min until I heard my 3rd alarm clock go off. While changing mom's pampers, I was crying. We kids do not cry. Our parents hated when we cried. We were punished very severely when we cried as kids. So, for me, when I cry, it means I'm having one of my depressions and am almost rock-bottom. Rock-bottom is either angry at the world and I will become abusive to parents, or I withdraw and all thoughts turn to suicide.

I'm so scared when I hit rock bottom. Because you see - I now have a fool-proof suicide plan. It's detailed. This morning, I tried to remind myself that I love my grandniece and grand nephew. That I want to see them grow. And how happy and loved I feel when they see me and get all excited (both about 1 year old). It didn't work. So when I go home, I'm going to dig up their photos and display it prominently in my wallet. Maybe if I look at their pictures it might help??

I don't want to bother my therapist. His wife's father is dying and they all went off-island to be with him in his last days. Hence - my 30days to get those darned exercises right before he returns! And so, I thought of you all. I saw your advice to Lisa and it's almost just like the therapist's advice. Plus, you guys make me smile. I was planning to go back to Lisa's thread and print out the funnies. Then I can read it when I'm down.

I don't want pills to treat my depression. I get addicted to drugs easily and have a very difficult time getting off it. Have you ever heard of anyone becoming addicted to Tylenol? Nyquil? Night time Sudafed? That's me!

Any other advice? An article you found that helped you? A humorous book that helped you? Thanks.

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Please tell me how to get a brother in Europe to get over to US to help. I am suffering as well because I also took care of my mother 8 yrs ago when she had cancer. No help EVER. I'm 58 and don't have energy anymore. I am also in despair. No one is around. Need caregiver whose here more often so I can be free to live my life and not have to worry every time I leave the house. I do same. Shut down and become depressed or want to kill siblings!! J UST realized this may not be place to post this. I do share your same feelings though.
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Martha, I'm amazed you were able to get PSW's in to allow you to work, but you need to have a little time just for you as well. Have you considered respite care? I believe funded care runs around $60 a day, but it would have to be in an approved nursing home.
Ask the doctor about something that will help her sleep. I wouldn't go back to the days when I had to sleep on the couch waiting for my mom to stumble by without her walker for a million dollars, even if it meant my mom could still walk on her own. Instead of fantasizing about your ideal escape find little ways to take the pressure off or you might blow (as I recently did). ((hugs))
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I must have not read all of the comment...thought she had no can you go to work?
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Martha2121, I understand! I pray that you can find additional help for your situation, there must be governmental help available for you! Doing this alone for much longer will run you right into the ground. I am glad that you get to REST at work! Please take care of yourself!
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Omg. At this point, both should have medical supervision. You shouldn't be doing what a nurse should be doing. That's going too far. They would he better if they were in a facility OR hire 24/7 private duty at home. This is way tooooo much for you. Does anyone out there know a qualified person or two to step in here? !!!!! Help this girl. I can't imagine what you are going through. I'm crying writing this. You need SUPPORT hands on!!!!! Send this link to other family members.
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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.
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Oh, bookluvr, I never saw these posts before. You poor thing. What a time of it you had. I hope you are getting more rest now thant your Mom has passed. Not that y are glad she is gone but I am sure it is a relief for you and her.
Your Dad is still around, right? Is he still with you in your house? I hope he treats you better!!!
Just wanted you to know I read your story and my heart breaks for you. Post me anytime to vent, chat, bi*ch or laugh. I would say cry but you don't like to. Now me, I love a good cry!! And a good laugh and a good yell. Heck, I am all over the place!!!
Book and can I make a suggestion, ?--I so often think to myself -I cannot do it , I cannot accept this and instead of trying to accept it I just ask God to help me accept it and leave it at that. Just pray for that. And it helps. Sometimes, miraculously almost, I do accept the thing I vowed I could not and I know God helped me , other times I know I am still a work in progress. So I keep praying. So, maybe, just ask God to help you forgive your parents, don't force it just maybe, give it to Him. You may not be able to forgive your parents but God can and He lives in you.
Blessings and hugs , my friend!!!
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I agree that our parents need to go into a facility and you need to be off the hook! You have done more than your share already and you should be having a live, not being a prisoner. It sounds like you have been a wonderful caregiver................for long enough! I would go to the brother, tell him exactly how you are feeling and tell him that you are leaving and all of the responsibility will be HIS. And then find a friend to live with until he starts doing his share and taking responsibility. Go to your church for help or a place to live temporarily. Your brother will have to help. He will have no other choice than to see what you have been through for so many years on your own. You need a long rest.
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The Master's Table – A Psalm for Healing
A Psalm by Rev. Richmond Paul Izard
On the Tenth Day of the Second Month, 2010

1Great is the LORD who reins in the highest power.
For He sits upon the majestic mountain, where He maketh His place of rest.
2O how great and awesome is His throne, for it too is consecrated holy.
The wicked and the double-minded shall not enter therein.

3His works He has finished.
So, let the blameless enter boldly into His promises. Let us drink from the river that satisfies the thirst of our souls.
4Look and see how the breath of His nostril flows even down into the valley and gives life, enternal life, to even the Dead Sea.

5“Drink,” I say to thee (all who suffer).
Drink ye all who are afflicted, for Yah shall give thee rest.
6“O taste and see that the LORD our God is exceedingly good. For the water of His fountain is sweetened with powdered sugar, a soft and gentle love, divine and true.”

7O let us arise early, even at the break of day before the sparrow sings, at the rising of the sun, and come to the Master's table:

8Let us eat of the plate of Adonai, our Lord and Master.
For His portion is full, and His portion is ours for the taking.
Such is the promise and the gift of abundant life.

9O give thanks unto the Lord, for He giveth us to eat and drink.
Let us give thanks also as we dip into His cup, yet only he who is worthy may sup.
10He that endureth much suffering, such is he, for he or she bears His name, even the mark of the cross.
Let us likewise keep His command, which is that of love.

11Let our beard drip of the blood of His covenant. Grace be unto and of our Heavenly Father, the One who keepeth us, and therefore unto the Bridegroom and even the Spirit of Truth who prepareth for His bride.

12Eat child, My daughter, My bride, for mine is your portion. Partake of Me, and be even as I.
For I am the LORD that healeth thee and feedeth thee, even in the desert;
O how much more in the land of promise! Amen.
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Pressed to the Rock – A Psalm of Perseverance
A Psalm by Watchman Richmond Paul
At the Time of the Harvest, On the Second Day of the Tenth Month
in the Year of Kingdom Worship and Grace

1Is our Lord's arm weary that He cannot defend us?
Is His heart sore vexed that He will not comfort us in the press?
2We are pressed to the rock:
Shall He not remember us in our distress
as we cry unto Him from the hollows of the valley?
3Shall not our reverberation put Him in remembrance of the vision He revealed to us
concerning these mysteries concealed before the first day of our planting?
4We must sing of that unspoken day, the unveiling of His precious promises.
Let our serenade be for the dance of the East Wind who blows upon
the secret garden which is His vineyard.
5Ah, blow Mighty Wind to bring forth realignment;
Eclipse thine acceptable time and acceptable day and acceptable year,
as foretold in the unrolling of Isaiah's scroll.
6Our lot is not in the valley of sorrows, nor in the turbulence of the sea;
7For endless turmoil shall not beset us.
8We shall be with Him in the cleft of the rock, in the hallows of the contour.
And our blood shall cleave to His garment by the fellowship of His suffering.
9For He has hallowed a place for us from whence flows the water and the wine.

10We bleed and are poured out.
But, the Lord God, preserveth our souls.
11The everlasting God, He is our fortress and our defense;
He maketh room for us in new skins.
12Thou, O Lord, are our comfort:
13The Lord of Alyosha preserves our life by defending our souls.
14The mighty one of Israel is our strong champion, the protector of our faith.
15He is the Holy One of Israel; the God of Abraham, Isaac and Jacob.
16Once we have called Him;
twice the cry echoes in the valley.
17A score and ten days shall our face be set to the temptation;
But we shall not be moved.
18For the Lord of the harvest, He shall keep us in His coming.
19We are poured out for the work before the frost.
Is not our Lord quickened with compassion?
Shall His hand not release the pressure at the appointed hour?
20Our afflictions are many; our sorrows run deep.
How great the press that brings forth the new wine and the oil!
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