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Thank you all for sharing your experiences. It does really help. They sound very positive, but ......I'm going to really pray about it. I know that with God I can do all things, but it seems like I've asked for so much strength lately.

My cousin seems pretty stable right now, of course, I've learned to be careful when saying that, but I know she is likely to take a turn downward. I know the time will come. Of course, she may go suddenly without being on Hospice and lingering on. I do want to make sure she's comforted and doesn't feel alone.
If it does come to that, I'll discuss it with the Hospice team and get their input. I'm sure they've seen all kinds of situations.
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Vstefans and Sunnygirl1, thank you for your replies and hugs. Sunnygirl1, you invited me to vent so here goes. I want to share what I'm feeling, because I can't hold it in, and who better than other caregivers would understand how I'm feeling? There's a special grief and regret that only caregivers experience, because we care. I remember when my maternal grandmother died at 89 (we weren't close) the only person who cried at her funeral was her caregiver.

I feel blessed to have had some time with my father before he died, when he was still able to communicate. However, things happened at the hospital, through negligence or callousness on the part of some hospital staff members,which made the loss more painful than it should have been. My father was admitted to the hospital after midnight on Dec.18 for shortness of breath and wheezing. He had CHF, chronic kidney disease and was on Lasix, He seemed to be getting better with oxygen therapy, so I went home after staying ten hours with him. I needed to wait for some deliveries at home. Later that day he suffered a silent heart attack in the hospital, but nobody told me. The nurse only said they were going to put him on the bipap to help with his breathing. Since the bipap had helped him six months earlier when he had his first bout with pneumonia, I didn't think it was necessary to rush back to the hospital that night. I needed to sleep to make up for staying up all night the night before. The following morning the doctor called to tell me my father had to be put on a ventilator, because the bipap hadn't helped him and he was suffering. He was on the ventilator under sedation for three days. Since he was in the ICU, under sedation, I visited him during the day and went home in the evening to sleep, assuming he was under close observation. The hospital is not that far from my home. On the fourth day, I found my dad awake and very distraught -- he wanted the ventilator tubes removed. At first, I thought he wanted to die, but he shook his head -- he didn't want to die, he didn't think he needed the tubes anymore. I explained to him that he had to wait a while longer until the doctor considered it safe to remove the tubes. He calmed down, but he looked so forlorn. I had never seen him so miserable. He was normally quite stoic. However, the fact he was wake and felt well enough to think he could breathe on his own gave me hope. He was able to write notes on paper to tell me what he needed. For example, he wanted a handheld fan from home to cool him off -- even though he had no fever and the room was cold, he felt unusually warm. He wanted me to direct the air flow to his nose, because it helped him breathe. Using an eraser board he told me he loved me, and I told him I loved him, something we did every day at home. I know my presence brought him comfort and that is a great consolation, but the sad images of him still haunt me.

That night I stayed with him all night and I was glad that I was able to advocate for him. When he couldn't sleep I called the nurse who gave him Fentanyl which put him to sleep right away, twice. When he awoke my dad asked me if I had slept, because I tend to suffer from insomnia. I had nodded off in the chair. I told him the nurse said we were both out like a light. My Daddy always worried about me.

On Christmas Eve, he was off the ventilator and it looked like he was recovering. He told me, "You see how much I need you?" I replied, "I need you too! That's what love is all about." He had gotten through other crises before -- he had beaten diabetes and peripheral arterial disease. His surgeon had called his recovery from gangrene on his toes a miracle. The ICU nurse told me to go home and get some rest, that he would look after my father and call me about any changes. I went home, hoping for a Christmas miracle, but I awoke with a feeling of dread. On Christmas morning, I found my father in respiratory distress, the oxygen cannula had fallen out of his nose and he was begging for air, water and God's mercy, over and over. His oxygen saturation had dropped into the low 80's. No one was helping him, and this was in the ICU! When my father saw me he thanked me over and over -- it broke my heart! I got a nurse to put an oxy-vent mask on him and increase his oxygen. He shouldn't have been switched to the cannula, because he was breathing through his mouth. The nasal gastric tube was blocking his airway. After that I knew he could not be left alone. Thank God I had slept the night before, because that helped me stay awake with him for the next 36 hours.

A couple of days before, I had reassured my father that there was a closed-circuit tv camera watching him in the ICU. He waved his hand in a dismissive gesture as if to say, "They're not watching me." I should have taken that as a warning. Still, I needed to sleep and there was no one else to stay with him through the night, because my relatives live too far away.

I'm so grateful that my half brother, a Critical Care RN, and my niece arrived at the hospital on Christmas Day. The doctor told us my dad's kidneys were no longer responding to diuretics and his creatinine level was rising daily. When I asked about loop diuretic braking and suggested they try a different diuretic, nobody even knew what braking is. I had asked the nephrologist about aquapheresis and he said they didn't offer it and that he needed full dialysis. The hospitalist said my dad was too weak to be moved. She seemed more like a robot than a human being. She said there were only two options, a heart operation or Comfort Care. If he had the operation he would need to be put back on the ventilator and placed on dialysis, which might kill him because the volume fluctuations would stress his heart. The doctor said his heart was not able to perfuse his lungs and kidneys properly, because of mitral valve regurgitation, enlarged left atrium, arrythmia with a blood clot, and blocked vessels. He had been diagnosed with advanced heart disease several years earlier but wasn't considered a good candidate for surgery then, now at 86, after his massive heart attack, his chances were even worse. She said his heart's ejection fraction was 15%, barely enough to sustain life. Mercifully, his heart attack had been silent so he didn't have pain, but respiratory distress is bad enough.

My niece and I tried very hard to convince the doctor to consider other options to no avail. My brother the RN said Comfort Care would save Dad a lot of suffering. My brother and niece started crying. I was still in shock, but broke down over the phone to my best friend in Cincinnati.

The hardest part was when my dad asked me if he was going (dying). I told him that the doctor said his heart wasn't doing too good and he needed an operation. I wanted so much to give him some hope to cling to, but I needed to know his wishes. He didn't want to go back on the ventilator and he didn't want to stay weeks in the hospital recovering from surgery. Two years earlier he had spent six weeks in the hospital just recovering from a botched toe amputation. That took a lot out of him -- he had lost so much weight, he couldn't afford to lose any more. Recovering from open heart surgery would have been much worse. I hated the idea of giving up on him. My purpose in life had been to try to get him well, but I didn't want him to suffer. A respiratory therapist told us that a lot of his patients were living vegetables on respirators because their families wouldn't let them go.

My father said good-bye and thanked everyone present, my half brother and his wife, and my niece. He said to tell his family and friends he loves them, thanks for everything and God bless them. Then he started praying. I told him he had nothing to worry about, that he was such a good, kind man all of his life that God would surely welcome him into Paradise. I reminded him that the priest had already given him the Anointing of the Sick while he was under sedation. His soul was pure and he would go straight to heaven. He thanked me. I had called two priests hoping one of them would comfort my father now that he was conscious, but one never returned my call and the other said he would send a different priest who works at the hospital, but he never showed up. More regret there.

For Comfort Care, my father was moved to a private room and placed on a morphine drip. I missed all the monitors, which I used to fixate upon, looking for the slightest sign of improvement. Thankfully, the morphine and removing the NG tube helped his breathing, and there was a brief time when he seemed his normal, calm self once again, except he was very weak. Again he started praying for God's mercy until a male nurse told him, "God is good, my friend." That seemed to reassure him. I treasure his last peaceful moments, before he lost consciousness. I told him where there is life there is hope and that I couldn't wait to get him home so I could take care of him. He nodded. One of the last things he said to me was that Michael was going to get tired (taking care of him). Michael was the RN who had saved his life during his six-week hospitalization a couple of years ago. That is another story. Unfortunately, Michael was working on a different floor. It really is the luck of the draw -- if you get good hospitalists and dedicated, compassionate nurses, your chances are much better.

As my father lay dying, my half brother and I prayed and read passages from Scripture. I told him I loved him and thanked him for being such a wonderful father all of my life. I had told him these things before. I held his hand. This time was beautiful from a spiritual perspective, but terrible from the physical point of view. People say that hearing is the last thing to go, but I hope to God that his soul was outside his body so he could view his physical suffering with detachment. The nurses told me he was not feeling pain, but how do we really know? At least, he did not appear agitated as some patients do even with morphine, as one nurse told me. My brother had to go home to sleep so I was alone for the last two hours. After 36 hours of keeping vigil with my father, I couldn't help but doze off for a few moments. That was when my father passed away. It was as if he had waited for me to fall asleep before he departed. A nurse said she saw him draw his last breath. One of the nurses was crying. I cried when the doctor confirmed his death. I had already cried several times before my father died, but quietly, so as not to upset him. I'm glad it was the nicer hospitalist who was on duty that early morning, and not the "robot".

The hospitalist who saw my father during his prior admission had urged him to select a DNR status -- is this even ethical? He said to him, "If you're not going to have heart surgery to save your life, then you might as well be consistent." My father was consistent, he had opted not to have chest compressions because it could break his ribs, and he opted not to have surgery, because it would break his breastbone -- he didn't want his bones broken. He did opt for trying the ventilator though, because he thought it would give him time to recover, which it seemed to do, until his kidneys and liver started to fail. I can't help but wonder what if they had tried a different diuretic two weeks ago, or aquapheresis, would my father still be alive?

My dad had been admitted to the hospital two weeks prior for shortness of breath which was diagnosed as pneumonia of unknown etiology. The hospital lab failed to do a sputum culture, even though the sample had been taken The doctor said this error was "disconcerting", but he still discharged my father after two days with just a prescription for 200 mg of Cefpodoxime Pro. I think my father didn't have pneumonia, and that it was his CHF all along. Pneumonia and CHF look very similar on x-rays. I should have gotten a second opinion or tried a hospital that offers aquapheresis. I have heard of aquapheresis helping CHF patients in worse condition than my father was in. However, he had been diagnosed and treated for pneumonia six months earlier, and had recovered, so I had no real reason to doubt he had pneumonia again, except that his sputum had not been tested. Six months ago it had been cultured for staph (non MRSA).

When he was admitted on Dec.18th, for shortness of breath again, the hospital did a sputum culture which turned out to be negative. Even though he wasn't in a high risk category for TB, they also put him in isolation for several days while a tuberculin skin test was performed, which was also negative. They gave him some powerful antibiotics, vancomycin and Levaquin. Nephrotoxicity has been associated with vancomycin since its introduction in the early 1950s. And I found an article called, "Fluoroquinolones: The Deadliest Antibiotics on the Market". Maybe the combo of antibiotics shut down his kidneys or even caused his heart attack. My grandmother died of a heart attack while on vancomycin back in 1984, also at the age of 86. She also had CHF and kidney disease. I understand that vancomycin and Levaquin are sometimes needed, and he had survived their use in previous years, but his kidney function was better then. If my dad's sputum hadn't cultured for bacteria, then why were those heavy duty antibiotics being used? My dad's death certificate states cause of death as "pneumonia of unknown etiology" along with respiratory failure, heart failure, massive myocardial infarction, and acute renal failure.

There's one last thing I want to vent about.... Several days previously, while my father was sedated on the ventilator in the ICU, there was a nurse from hell who always talked down to me and called me a five-year-old in terms of my medical knowledge, compared to the nurses and doctors. I'm not a trained RN, but in 30 years of caregiving for four relatives in succession, I have done a lot of research on their behalf. Still. I didn't want to rattle her ego, so I said, "You certainly know what you're doing." She replied, "Yes, I know my shit!" At one point she told me, "What would you rather have, someone who knows what they're doing or someone who is "touchy-feeling"? I replied I'd rather have both. She answered sharply, "Well, you can't have both!" I asked her if it would be contra-indicated to place an extra blanket on my father. The blankets were thin and the room was cold. Knowing how arrogant this nurse was, I was careful to phrase it as a question, not a demand. Still, she got flustered and said, "If you place too many blankets on him, his temperature will rise and then we'll have to give him more antibiotics." He didn't have a fever and he felt cool to the touch. The nurse lectured me with a sarcastic tone, "You may have taken care of your dad at home, and I'm sure he's a wonderful man and all, but he is in a different world now!" I replied that I was just trying to advocate for my father because he can't speak for himself. She reluctantly brought the blanket and proceeded to wrap it over the top of his head. Since my father wasn't used to sleeping with his head covered, I asked a male nurse permission to move the blanket to cover his body. This nurse misunderstood me and brought more blankets, which further irritated the nurse from hell. I'm not Asian, but she mentioned Chinese families who demand six blankets on their loved ones, even when they have a fever, One thing she told me that disturbed me more than anything else was that she said her religious beliefs didn't approve of keeping people alive artificially! My first impulse was to ask the Intensivist to have her reassigned, but he wasn't available. Then I remembered what my father had told me about not making waves, because he might be the one to pay for it. I was afraid the nurse would pull the plug on my dad, in accordaince with her belief system or as revenge for my complaining about her So I kept quiet and even asked her permission to dim the lights, so she could enjoy her power trip. Later I saw her moaning in the hallway that people don't understand how much work a nurse has to do. An older nurse replied, "Sorry, that's part of the job!"

I know this post is too long, but I think it's therapeutic to write about our experiences as caregivers. Now I have to find a new purpose for my life, but right now my life feels pointless and I'm afraid of spending the rest of my life alone. .

As my best friend who also lost both her parents told me this evening.... "Life isn't perfect. But our intentions matter. That we cared and tried, matters. Some things, while maybe altering somewhat the things that happen, may not ultimately change the outcome. Maybe they might have made them worse." God only knows.
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Oh, Parysia, that's an awesome story, and so good and brave of you to share! It is so sad and wrong that you and Dad were faced with some hard-hearted health care professionals not quite worthy of the name (especially the "care" part.) Yes, his heart was bad and probably leading to the all the other problems, so they were medically just between a lot of rocks and hard places with the renal condition. I don't think the things you mentioned medically would have changed the ultimate outcome, e.g. the combination diuretic thing may not work out and can have bad effects by itself, the antibiotics were probably critically necessary too and the vanc level can be monitored...so yeah, I can see where you and the they would have been coming from on the details of the medical care being provided. I had a h*ll of a time not with the what-ifs and second guessing everything done with my mom's care too - before during and after (!)

But - more important than any other thing - your being there changed everything that really mattered to your Dad.
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Sadly I've witnessed several family members pass, each time is different. Grandpa 1 passed with stroke, over several weeks slowly, but peacefully. Grandpa 2 at home with hospice.....more like shallower and shallower breaths but peaceful. Grandma 1 in hospital of heart falure after 2nd quad bypass and it was awful, in pain, asking us to put her out of her misery. My dad after 2nd brain tumor surgery @ 52. In hospital peacefully. My grandma 2 @ home hospice complications of hematoma in her brain after 2nd brain tumor surgery, peaceful in her bed with me alone (mom& aunts in other room, didn't know it would happen right then) my sister in hospital complications of diabetes, after weeks of strokes she was left with only pain until I convinced step-mom to let her go off life support...she finally passed peacfully a few days later surrounded by family. My mother in law, jus me and husband, aweful, in hospital probably of heart attack, spitting up mucus, luckily my husband was behind her and couldn't witness her face and I could use suction quickly. Right now taking care of sister in law with end stage cirrosis, breast cancer,CHF, psycosis, artritis, among other stuff. I didn't realize how many people I loved I'd witnessed passing until very recently ....and seeing it layed out here it's astounding. When my dads parents and my dad passed one year after another was the hardest, I felt like I re-lived the previous ones passing all over again. I was very close to each one of these people. I guess time has healed a lot and also you begin to savor the good. You begin with time to forget HOW they passed and remember the person they were. Seems like I only remember the bad when I'm going through another death...so maybe that's what you're experancing now. Time and family support are the only things that got me through.
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Thank you, Hansolos and vstefans for your comforting replies. My sincere condolences to you both over the loss of your loved ones. The passing of my father was the first death I had ever witnessed, because the three previous relatives I had cared for died suddenly at the hospital, in the middle of the night, when I wasn't with them. I regret that I wasn't there at their passing, but I didn't know they were going to die when they did. Losing my father has given me much more sympathy and understanding for those who have to witness the death of a loved one, and even worse, learn how to live with the grief for the rest of our lives. Now for the first time in my life I am afraid of my own death, Who will be there for me when my time comes?

The hardest thing is missing my dad, because our lives were so interwoven. Almost everything that ever gave me happiness is associated with him. I can't even enjoy watching tv anymore, because he's not there to watch it with me. I know it takes time, but it's hard because I don't have any friends close by and I don't drive. My neighbors have been kind but we don't have much in common. The friends my father and I used to have either died or moved away, and some fake friends abandoned us once my father started to decline. For the first time in my life I am lonely and it's hard to handle on top of the grief and anxiety. If I can get through this, I know I will be a stronger person, but I worry that I will never be as happy as I was when my father was alive. People tell me I'm strong, because I was a caregiver all those years, but I was with people I loved and enjoyed being with. They tell me my father would want me to be happy, but more than anything he wanted me to be "safe". How can I be safe with no one to protect me? I used to be able to walk the streets alone at night fearlessly, because I could call my dad on the cell phone. Even though he could no longer physically protect me anymore, I still felt safe because he was always there for me. I would have taken a bullet for him and he for me. He was my hero, my guardian angel. He used to be a boxer in the army during the Korean War. He was tough but the kindest man I've ever known. Now I don't have any backup and it's scary. I recovered after the deaths of my other relatives, because my father was there to give me moral support. Now I am alone. I could die in my bed and no one would know for days. I go out to dinner with friends and relatives occasionally, but I come home to an empty house filled with memories. I have a sadistic friend who says if I get a boarder they will kill me in my bed. She lives alone but she's used to it -- I grew up around my wonderful grandmother, great aunts and great uncles. They don't make people like that anymore. Most of the people in the city where I live are too "out there" for my taste. I feel like a stranger in a strange land, even though I've lived here all of my life (San Francisco). I've always loved my hometown but It has changed a lot. It's tough being a woman alone. Even contractors charge a single female more than males. So far the nicest people I've met are the cab drivers.

If I could only sleep better then I think I would cope better. I'm already dependent on Ambien, but it only lets me sleep three hours at a time. A cousin told me it's probably causing my anxiety. She got me a natural remedy with herbs and melatonin but it doesn't work for me. A doctor at a drop-in clinic prescribed Seroquel and it relaxed me, but it didn't put me to sleep at all. That's a powerful antipsychotic and it didn't put me to sleep! Just made me lethargic and bloated.
I read that it causes weight gain and damages the heart. Another doctor just prescribed Xanax and Ativan for me, but I read that benzodiazepines can cause brain damage. I haven't filled the prescription yet. The doctor said I may have to go some nights without sleep for a few days until my brain adjusts to not having the Ambien. Maybe that would be better than getting hooked on benzos. Sorry if some of this stuff is off topic, but I feel comfortable sharing with other caregivers. God bless you all!
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Several people have suggested counseling and that is a wonderful step. But you need to focus on the fact that you are doing an amazing thing....you are being there for your loved ones as they transition to a better place. And while it is hard for us who are watching...........they are being set free of their old frail bodies to live again. I was 17 when my dad died and he passed in the hospital in the middle of the night so I was not there as he passed, but my mom passed this past Thanksgiving after a rugged bout with a fast acting dementia. It was scary and I felt like I did not know if I could do this at home, but it is what we wanted and with Hopsice's help we did it. But you may think this sounds strange, but if you are open to it, you need to look at is a very moving and life changing in good way experience for you. As my mom began passing.....I could feel that barrier between worlds open up. I sensed my dad by my side, I could actually smell a leather jacket he used to wear, and I was back in my old house as a kid, seeing small details that I would never have remembered 30 years later. I sensed that life was changing....but not ending. And I was there to be by mom as she met my dad again. I know they are watching us...as this transition happens......when the hospice nurse told me my mom was gone............I cried and screamed so loud....apparently I interrupted her dying process. 45 minutes after I had already gone down stairs and was calling the funeral home, the nurse called me back up......my mom had stopped breathing....but her heart would not stop because she was so upset by my crying so much. I had to go upstairs with my boyfriend again and talk to her and we told her I would be okay. Then she was able to pass. Was it emotionally draining...........you bet. Does it wear on you.......of course. But in the end, I have looked at it as an amazing blessing. I was able to be there as my mom moved on to a better place....and I know that when my time comes, she and my dad will be there for me to take me home. So it eliminated one of the biggest fears most people have. Good luck to you and try to concentrate on living and enjoying the time you have. Your loved ones are safe and want you to be happy!!!
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Parysia, thanks for telling us the full story. Your friend is very wise. You did everything that you could. So many things are out of our control. Please keep letting us know how you are doing.
Carol
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Thank you, reallyworried1, for sharing your amazing experience. I'm not particularly psychic, although my father and I could often read each other's thoughts, we were so close. I have dreamed about him a couple of times, but I only remember short fragments. One comforting thing my cousin told me is that the night my father died she had a dream in which she saw him in a beautiful forest. He was younger and looking well. He smiled and said that he is ok and that he's good to go. He told her to take care of me, and that's why she has tried to help me, God bless her, although there is only so much she can do. She also saw our grandmother the night she died. She was standing in the doorway of her bedroom and smiled. She also saw her sister in a dream the night she was killed by a drunk driver in 1970. I believe my father was trying to send me a message through my cousin, because I want to believe it.

Another experience my cousin shared with me occurred about ten years ago when she suffered an internal hemorrhage. She lost a lot of blood and the doctor said it was a miracle that she hadn't died. After her surgery she was in the recovery room when she had a dream or vision of a beautiful little girl who was asking her to come with her. She didn't know who she was but she felt peace and happiness wherever it was that she was at She was about to go with the girl when she heard the voice of her father who had died fifty years ago when my cousin was only 13. After all those years, she clearly recognized his voice. He told her, "Do not go with the girl." So she stopped and then she woke up in the hospital. A woman was looking closely at her with her face way up to hers. She asked the woman, "Who are you?" and "Where am I?" And she answered, "I'm your nurse, Susan." My cousin said she felt as cold as death itself, and the nurse brought her some warm blankets. She drifted back to sleep and when she awoke again, her husband and her mother were there in the hospital room (they are still living).

Her story reminded me of a story another cousin told me at my dad's funeral reception about her father seeing a vision of a beautiful little girl before he died. She asked him do you mean your granddaughter (who is very beautiful). He said, no even more beautiful than my granddaughter, which was saying a lot because he doted on her. Perhaps it was the Angel of Death.

Yet another cousin mentioned that the day before his mother died, she experienced a vision on the wall of her bedroom of a heavenly light. She tried to waken her husband, so he could see it, but she couldn't wake him up. He usually was a light sleeper so the vision was probably intended only for her eyes.

I will try my best to believe that my father is still my guardian angel.
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Parysia, I was close to my dad too, remember he's still with you in your heart and memories as well as watching over you. Try and get counseling, but also spend as much time with family and friends, even if you have to force yourself. You never get OVER the passing of a loved one, but you do end up cherishing those memories. My sisters (who passed) ex husband still mourns her passing like it was yesterday and they were not together for years before she passed...he's ignoring his life still 7 years later, no way to live. Maybe do things your dad would have liked seeing you do and know he's watching happy for you. My dads been gone 13 years..and I moved to a new house he would have loved recently and feel him close, as I decorate and do stuff he would have liked, I just think "dad would love this! " he's still right here with me in my heart everyday. People are right in saying he would love to see you happy, it's true, but easier said than done. From what I hear sleeping pills are not good, my SIL has never got more than 4 hours sleep on them, I say try going off and see if you can try to find natural balance. My SIL has been chasing sleep for years, alcohol, pain meds, sleeping pills, anything....and it's killing her now with the cirrosis. Yea, sleep is wonderful, but chasing it is never getting it. You don't sleep as it is, so do something like reading or online, don't chase it or it will never come, induced sleep is never satisfying anyway, and watching the clock to see how much you got or how much you didn't is part of why you don't. Try and keep clock out of your room, or turned around and don't look at it, just set your alarm....clock watching is the worst thing you can do. Whatever sleep you do get, don't time it, just be happy you slept some and move on, it will get better if you quit chasing it! It even helped SIL after all these years. You don't want to go out like her, it's horrible, she's only 53 and cirrosis is horrid. She's like a 3 year old, throwing tantrums and getting into stuff, like rubbing desitin all over her face, climbing stuff to get out of her room in the middle of the night.
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Thank you, Hansolos, for your wise advice. My sincere condolences on the loss of your dad. I'm sorry about your SIL and your sister's ex husband.

When my dad died, I was in the process of gradually trying to fix up the old house for both of us, and that adds to my regret that he didn't live to see the projects completed. In fact, we had so much frustration with contractors that I had to fire the last one for breach of contract. I'm glad that we had peace and quiet during my dad's last month. I will have to take it on faith that he will enjoy seeing the improvements when they're all done. He loved this place -- we both grew up here. Now people are telling me I should sell the family home and move someplace else, but I think I need to take one upheaval at a time.

That is a good idea about not chasing sleep. It's true that induced sleep is not satisfying but sleep deprivation feels worse. Normally I take two 5 mg Ambien to get six hours of sleep, but this time I didn't take the second pill. It's not easy, but I will try to wean myself off the sleeping pills. I only have one Ambien left anyway and probably won't be able to get it refilled. I've tried alcohol before, but it doesn't put me to sleep. I like how the Pisco Sours at a local Peruvian restaurant make me feel but I don't drink alone. I have a liquor cabinet filled with booze, but thank goodness it doesn't tempt me. Someone suggested marijuana. I'vr never tried it, but I don't like the smell of it. I also worry about it being laced with something. Some studies have linked marijuana with anxiety and panic attacks. Even hydrocodone keeps me awake.

I had a 45 minute therapy session with a social worker last week, and have another one on Wednesday. Maybe I should try a psychologist, but not sure if even Sigmund Freud himself could help me. Somehow I will try to find my way out of the depths.
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Psychologist maybe, if you need to talk; therapy. Psychiatrist is not for talking, that's medical for medicine. MarAjuana can really help I guess, got a friend with PSTD who swears by it. Don't worry about it being laced...lol that costs MORE, nobody is going to lace it unless you pay for it, so don't even worry about that. It's better than meds anyway, you can't OD, it doesn't damage insides, except maybe lungs and you would have to smoke like all day every day. It works for some people. I don't smoke myself. Hydrocodone has the affect on some people of being an upper, so that's not unusual. Good you're done with the sleeping pills. If you know anyone who knows pot, there's 2 kinds, ones like more an upper and ones mellow, I'm not sure which is which.
If you enjoy the house, and enjoy working on it and don't HAVE to move, don't, do what makes you happy. Sometimes change is good, I myself move ALL THE TIME lol, every 2-3 years I gotta go! I love interior design and changing stuff around...I even like moving (I have issues) haha. Sometimes a fresh perspective really helps, all we can change is how we we perceive things and how we let it make us feel. I just saw you're in San fransico, OMG, EVERYONE around you will know about marajuna. Maybe someone can get you the vape thingie, it doesn't smell. I'm in california too, so I know you've got dispenceries around, you don't even have to rely on anyone, go get the card, they will give it to you for anxiety and depression, and go into one of the stores and ask them, they are very knowledgable. I had my friend with PSTD ask for my SIL a few years ago. Whatever you do, get out and about, living alone it's too easy to hole-up and get trapped in grief. You loved your dad, you did your very best by him, and I'm sure he'd tell you it's time to live for YOU, think of what you'd like to do for YOU. I went back to school, I'm currently a student @ 43 and I love it. Do whatever feels good for you now.
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Thanks again, Hansolos. About once a week, I've been treating various relatives and friends to a nice Peruvian restaurant I recently discovered. I feel comfortable there because it's not a place associated with my father so there are no haunting memories. "There is no pain so great as the memory of joy in present grief." ~Aeschylus

Since I can't find a support group near to me, these weekly dinners have become like mini-support groups, which are therapeutic for some of my guests as well. One cousin started crying because he regretted not telling his mother he loved her before she died, because he didn't want to say good-bye. He was just a kid when she passed away in 1966.

I need super tasty food to stimulate my poor appetite and the Pisco Sours to dull my pain. The wait staff is friendly. Since talk is therapy, and therapy is expensive, I'd rather pay $150 to $200 to talk to people I know in a pleasant atmosphere, rather than pay the same amount to a therapist. I don't have health insurance right now. I'm still going to see my therapist tomorrow for my second session, but she's so young, She wouldn't know what it's like to face a lonely middle age. I read that loneliness is more deadly than cigarettes.

I don't think I can get up the nerve to try the marijuana, because chronic use can paradoxically cause anxiety. My niece has a Medical marijuana card for Celiac disease, but I can't say it has helped her mood. Maybe it relaxes her while she's smoking it, but the effect doesn't seem to last. It has given her a stubborn case of bronchitis.

Last night I was so desperate to fall asleep, I tried 1 mg of Ativan. I managed to get about six hours of sleep which has helped me feel a little better. While I waited for it to kick in, I didn't feel any euphoria or anything pleasant but it eventually put me to sleep, maybe in about twenty minutes. I still thought about my father's passing but forced myself to think of something happier like cute kittens. It took some effort to say my prayers because I wasn't thinking as clearly. I worried about waking up in a stupor, but thankfully, I didn't. I was also anxious about taking it, because of all the stories on YouTube about how hard withdrawal from Ativan and other benzos is. I woke up feeling drowsy but not as lethargic as Seroquel. Ativan seems to be stimulating my appetite, as Seroquel is known to do. I don't know what I'm going to do tonight. I don't want to take the Ativan long term, because it's harder to withdraw from than Ambien and it's easy to build up a tolerance.
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Just be careful :) it's okay to use a certain amount of time, epically because you're still in mourning :) I think the going out and eating is a great idea with friend & family! Idk about support groups, I've never been, I'm more family based...lol and they KNOW me and put me in check when I need it, make sure I don't go nuts with all the caregiving responsibilities...force me to talk about other stuff. I feel like this site helps me to vent, but I wish it was more instant. Finding it hard to focus on other things, and I have to! Kids and hubby missing me though I'm here, because I'm so wrapped up in taking care of SIL.
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I do not know how old you are but I am 57--a time when I am supposed to start to think about retirement (that happy next to last stage of life). My mom has dementia and is mean. It is hard to think about retirement and not jump to the crazy, nursing home stage. It is so sad. There is no escape until we are free. You are free, but you are still suffering. I hope you can move on soon.
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Parysia--DO NOT TAKE ATIVAN....PLEASE. Ativan caused my mom's dementia. Read about it. And even though you think you will only use it short term....it can be quickly addicting. My mom accidentally took a few extra super mild dose ativans and could not get off......it was a nightmare and it accelerated the alzheimers. and Seroquel...well the black box is scary. I did give it to my mom at the end to stop the paranoia but she was dead with in a month.

I am not saying these things to scare....I understand where you are at. But right now you need a make some decisions because the steps we take when we feel depressed, scared, lonely and in mourning can end up either making our lives worse or better. Right now everything you do --you need to say..is this going to help me long term or hurt me.

When things got bad at home I was cooking with wine...I had a glass...I am not a big drinker......but wow...it was easier coping with mom's illness...the next night...hhmm had another glass of wine.............you know what..the third night I threw out the liquor in the house.

I did not want to create a new problem. I was going to have go through all the pain, the scariness and sorrow......and there was no way around it....except to find postive ways to help myself.

It is great eating with friends and socializing....

but now it is YOUR time....so write down what you want to achieve...and go make the steps to do it...

My mom and I were super close -----she was blind and not too well and she lived with me for years...........

but now I have more freedom...so I am excercising, taking piano lessons online, trying to grow my business, learn how to save money for retirement, have fun with friends, plan a trip with my boyfriend.

I am doing what my mom would want me to do--LIVE...that is what we are here for....do not let the sadness get you down...Yes cry...I still do and get depressed...but then I think....my mom is in heaven happy....and I am here miserable?? NO not what she would want.....I owe her way toooooo much to let her down.

Don't mean to sound preachy...just been there and know you can get past this and start living...........do not waste any time...we both know it is too precious...Hugs!
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My sister & I were with our Mom when she passed in hospice. We both fell asleep - she died at around 5 AM. We called our husbands but decided to go home & come back wit them mid-morning. As we were walking toward her room, this overpowering smell met us. Hard to describe yet I can still remember it - seven years later-sweet but just gross. I was told it was from the hospice nurses "tending to" Mom....combination of cleaning & spraying her along with the room. No one else seemed to be bothered by it but me; I had to go outside in order to stop gagging. It never occurred to me that anything like that would be done except by the funeral home. I was so traumatized that I met with the hospice social worker, that day,who helped me get through it.
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I am 55 and for the first time in my life I am "free", but instead of looking forward to retirement, I will eventually have to find a job, if I want to keep my house. At my age, with my lack of work experience and the way I feel right now, finding a job is going to be very difficult, if not impossible. I used to sell things on eBay and my small inheritance helps pay the property taxes, but it was my father's retirement income which was our mainstay. I'll have to live off my savings for a while, until I figure out what I'm going to do. Thank God my house is paid for.

My therapist today told me to do three things just for myself, because I need to learn to take care of myself instead of my father. She suggested buying myself something special, take a walk on the beach, go to a book store, get my nails done..... The trouble is I've already got enough "stuff" -- I need to declutter my life, yet parting with my dad's things is going to be painful.

I love the sea but going to the beach by myself makes me feel unsafe since I don't own a car. I can get people to go to a restaurant with me but the local beach is too boring for them.

I have too many books. I'm not into fancy nails. I really can't think of a single thing I want to do by myself for myself right now. I've always wanted to go bowling, but that's more of a social activity. I normally love movies and music, but now they remind me too much of my dad. Last night I turned on the radio my dad used to listen to. It was tuned to his favorite station (classical). I had to shut it off, because it made me too sad. Even if he is still here with me, I haven't been able to feel his presence, only his absence.

As I was walking down the street after my therapy appointment, I saw a phrase stencilled onto the sidewalk. It read, "I want you to miss me."
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It will take time panysia, but right now you must force yourself to do things. Also, on limited income, you need to go Dutch with people at dinner sometimes, you can't spend THAT much money on buying dinner. eBay is a good idea for the clutter too! Busses will take you anywhere! when my dad passed I stopped reading for quite awhile, where before I'd read 3-5 novels a week...idk why I stopped reading, it's not like I read with him! Reading had always been my me time. I lost my dad when I was only 32 and him 52....I felt robbed of time, also his own parents died not long before him, each one passed in August 2000, 2001, & my dad 2002. I knew the pain I'd felt loosing my dad, and was despondent over the fact in my dads last 2 years he was devastated over the loss of his parents. Your loss is devastating, but you are blessed with options and a little time to figure out what you'd like to do. A house payed off in San Francisco? Omg, if you ever decided to move anywhere else, you could buy a nice little house outright and have money to live on! At least check zilliow and trulia and get a basic idea what your home is worth. I don't blame you for not wanting to move, but at least it's nice to know, even if you never move. All you have to do is type your address on either site and it will give you a rough estimate. You also mentioned boarders, which your fam advised against, but maybe a great idea, you could totally look for a single female, from what I hear, there's a huge affordable housing shortage there so you'd have your pick of tenants! I mean, renting out a room could totally cover your utilities plus. I live in the cheapest part of so cal and they get 600 bucks for a bedroom and house privileges here. San Franscico is one of the top 10 most expensive cities in the U.S. to live in. I'm not saying do that right now at all, I'm saying look into it well before your situation gets dire, just so you know. I always have back up plans for everything. I'm sure you an find a job, but say that falls through and the next option doesn't work, then you have this option. Doesn't hurt to have knowledge, even if you never act on it.
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I really appreciate your warnng about Ativan, reallyworried1. I'm so sorry about what it did to your Mom. Believe me, I would never have taken it, after reading the horror stories online, but I can't sleep at all without some kind of medication. I slept five hours last night with 1 mg Ativan, but I didn't feel rested. I'm going to start tapering it to 0.5 mg.

How great that you are learning to play the piano. My father and I used to play the piano together by ear. I had bought him a new keyboard as an early Christmas present. Sadly, he only got to play it once. I don't know if I'll ever be able to play the piano again without missing him terribly. We used to play old songs that most people have never even heard before. We also used to quote obscure old movies back and forth to each other. We were in a world that was uniquely our own. Just thinking about it gives me anxiety in the pit of my stomach, but I don't want to take the Xanax the doctor prescribed for me. The therapist suggested Remeron because it's not as addicting but practically all these kinds of meds have nasty withdrawal symptoms.

I'm so glad to hear that you are making the most of your life, and I wish you continued success, but you have to admit it helps to have a partner/boyfriend to double your happiness and divide your grief.
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Thank you, Hansolos, for your wise advice. It's true I can't afford to keep treating everybody to upscale restaurants, but I feel I have to bribe them to come see me. My friends and relatives are very frugal, even the ones with good incomes. They pinch and save so they can show off at appropriate times. It is a blessing to have my house, but my relatives tend to envy my inheritance so this has caused a lot of heartache and trust issues for me. On the other hand, I'm not wealthy enough to socialize comfortably with my millionaire neighbors so I'm stuck in no man's land. And to think this used to be a working class neighborhood that nobody wanted when my family moved here in the 1930's.

I'm very sorry you lost your dad at an early age. When my mother's aunt passed away from cancer at 87, her only son was devastated and died four months later. He had just retired. My father and I were so close, that I wonder if I will survive my grief. If I weren't a naturally cheerful person, I'd really be in trouble. I have to remind myself that my father was only going to decline more if he had lived longer. But I know he didn't want to leave me-- we were looking forward to spring when we could work in the garden together. I told him I would be ok, but quickly changed it to -- "Everything's ok at home, Dad.". I didn't want him to worry about me, but at the same time I didn't want him to think I was ok with the thought of him dying. It was so difficult to find the right words. I didn't want him to suffer for my sake, but I also didn't want him to lose all hope.

The idea of getting a boarder scares me, because my neighbor got one bad tenant after another. She ultimately got fed up, sold her house and moved to Taiwan. My other neighbor took pity on a homeless family, charged them very low rent and then they turned around and sued her for not fixing something. One visiting nurse told me he had a lonely elderly patient who let a man move in with her and now she can't get rid of him, and he moved his friend in, too.

I will carefully consider my options.
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Addie, I am sorry for the stress you are encountering. It felt traumatic when my Dad died in his sleep many years ago. I never forgot that day but it became less traumatic. What I tried to do whenever I thought of that day was to replace it with a good memory of my Dad and I began to come up with many good memories of his life too that way. The trauma does lessen in time and replacing the bad memory with good memories really helped me.
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In my opinion, friends and relatives who must be bribed by paying for their meals to come and see us do not really care about us and we are not taking good care of ourselves by not taking good care of our limited resources. Take care.
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I'm just saying look into all options before things get bad while you have savings.evey border and every experance is not the same, also you can see a property management person handle it. I kind of thought you might live in that kind of area, :) I'm not saying to get a border, just see how that could work if everything else fails and before you have to think about selling. Since you both lived on dads retirement and that income is no longer available, things can change very quickly. Because you don't have much work history and lived with dad, I think you may have been pretty insulated. Grieving takes time, but some options have to be explored immedatly, at least for information, better to make informed decision than a rushed one when you have no money :)
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cmagnum, this is why I'm struggling with loneliness, because the only person I could trust to care about me was my father because he had a vested interest in my welfare. Are professional therapists going to care about me more than my relatives? Maybe some but certainly not all. Not all my relatives care about me, but I picked the ones that offered their help (before I invited them to the nice restaurant). At least, they made me feel happier than the therapist I'm currently seeing, because I'm more comfortable with them. They're busy and have their own immediate families to care about. Maybe they would have met me over a $4 burrito but is that fair to them? As for the expense, I haven't had a vacation in 14 years and I didn't dine out much as a caregiver -- these dinners are my vacation and a lot cheaper than paying for hotels and transportation.
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Yes, I was very insulated, Hansolos. This is why I'm so worried now -- I have no proof that I can survive on my own, but I have to try. I have also seen people who did everything right -- get a degree, marry well, work all their life, raise a family, and they can't afford a house. I try to count my blessings.
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Definitely contact Hospice they have great staff. My mom passed away at home, my dad and I were with her. Our loved ones pass, hopefully in their older years. This is life, and it's natural. Death is more difficult for those of us left behind than it is for those who pass away. I can certainly understand how difficult this has been for you. I always keep in mind that all things alive will one day pass, it's the natural order of life. Celebrate your loved ones life for all the good times and special moments, that's how I deal with this issue. Death can be a release after someone has been ill, I know my mom is no longer ill or is in pain. Everyone has different opinions and beliefs. I miss my mom everyday, but I would not want her back if she had to suffer. Each of us has to find a way to deal with the loss of loved ones. Hospice has specially trained social workers that may be able to help you. Sometimes death does take days and we watch our loved ones disappear a little at a time; Hospice staff should be able to help you process all the feelings you have.
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Losing a parent is a terrible experience...I lost my father two one-half years ago. He was 90 years old but I still miss him terribly. But the one death I can not seem to get through is the loss of my daughter 7 years ago from Breast Cancer. She left a one and a three year old child and she was 35 years old. I was by her side 24/7 for three days and still felt she was going to get better. I still can not get past the grief (am crying right now) and I don't know if going to counseling will help after all these years. Does anyone have any help ideas for me...my husband just says "Buck Up" and get over it!!!!
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cbradp, my heartfelt sympathies for the loss of your loved ones. I think going to a grief support group might be worth trying. I tried going to one and found it helpful. I think I like it better than individual therapy, because you get the sense that you are not alone in your suffering. Unfortunately, the group I went to got cancelled because of low attendance -- I think it wasn't advertised properly -- the location wasn't clear. I only got to attend one meeting. The three other people who were there had started before I did, and they said that they found the meetings helpful and pleaded for the support group to be continued, but the management said they had to have a minimum of 8 persons. The sessions were free but were intended to generate interest in the paid grief workshop which doesn't start until April. We need help now! Only someone going through the same kind of grief can understand what we are going through. There are groups that deal specifically with the loss of a child. Unfortunately, I haven't been able to find one geared toward the loss of a parent that is close to me (I don't have a car). Maybe you will have better luck in your location. Take care and God bless you.
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Yea parysia, I kind of figured that...and there is no one way to live a good life! My mom has lived with us or I lived with my mom most of my adult life. I've got cousins who never married and hung out with their parents also. You've had a great life one way thus far, but now it will have to change. Change can suck, but it can be good in ways too. It was fine to treat family, just next time maybe go Dutch :) you're right, everyone is so busy! Do you have anyone you can trust to help you figure out what to do next as far as making income? Nobody can be there for us like our parents, that's what parents do!
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So true, Hansolos. Change is hard for someone like me, but it's part of life. My half brother promised to treat me next time to the same restaurant or maybe we'll try a different one. Fortunately, I live within walking distance of the Employment Development Dept. They should be able to help me. I'll be the world's oldest teenager looking for a job. :)

I just have to overcome my terrible insomnia. Last night, I thought I would try to cut the dosage of the Ativan in half to just 0.5 mg, but this made me sleep for only two and a half hours, even less than the Ambien. My GABA receptors must be fried already. When I awoke, I was still groggy and I had forgotten that I had even taken the half pill! I had waited an hour to see if I could fall asleep on my own. When I couldn't, I took the Ativan. Luckily, I had put the pill in a special container and when I saw it was missing I knew I had taken it, though I had no memory of it! This frightened me, so I got restless and decided to get up and research more about tapering off Ativan. Apparently, you're supposed to taper off of it very slowly for weeks at a time before lowering the dose, but I am too scared of benzos now -- I don't want to take them for weeks.

During my brief sleep, I had a dream about my father. I don't recall the details, but I remember calling out for him and finally he appeared and I was so happy and relieved to see him alive! I want to cry but I only get tears not sobs which would bring me release -- I'm too wound up. I can't recall our conversation, but it was good to see him for those few moments, even if only in a dream.
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