In the end stages of CHF, how long can you live without eating or drinking?
My husband's 85 year-old grandfather has stage 4 congestive heart failure. He was given morphine to induce a coma and hasn't had nourishment in over 4 days. He gets a few trickles of water through a straw every 8 hours or so. How long can he survive like this?
Life expectancy after stopping food and water with congestive heart failure would depend on the progression of the disease process. Stage 4 suggests advanced disease, where even minimal physical activity would result in difficulty breathing and pain with any activity. His body is probably very tired and weak. He may have had difficulty eating for some time now. Further, he is 85 years old, and no doubt, has been fighting this disease for many years. While it is impossible to state how long he can survive, some people can actually live several weeks without food if they are well nourished. This probably would not be the case here. However, without water, that period is shortened. At the end of life, people tend to drift in and out of consciousness and may actually appear to be in a coma. I mention this because morphine is not used to induce a coma; it is a drug used to treat pain. No doubt, it was administered to treat the pain your husband's grandfather was experiencing. If he appears peaceful, his pain is probably controlled and he is going through the "dying process" as his body prepares for death. In hospice care, using swabs to moisten the mouth is advisable when people are unable to swallow or who are unconscious. Losing the ability to swallow is a normal, physiological change as death approaches. Giving water through a straw could cause him to aspirate, drawing water into his lungs. (I'm assuming he is receiving hospice care, since you mention morphine.) Keeping him comfortable now, pain and symptom managed, will allow a peaceful life closure with dignity and respect.
it helped to understand a process.
very useful. thanks very much
Hmmm, my own parent died of CHF in a nursing home, with a DNR in effect. Water was given through a straw near the end too. Was not able to eat or drink. Wonder why they allowed the straw, rather then wetting the lips? Died on the fourth day. The waiting was the hardest part - 96 hours (or less). But all worth it knowing your LO's wishes are being fulfilled, that closure is near, and that a peaceful and pain-free afterlife is beckoning, returning your LO to the arms of those who went before them as well as our everlasting Father. Being there, loving and caring, is the best gift of all.
i cared for a lady at home and she lived for 16 days without any food and water,nor an IV, in a semi-sleeping state, so it does vary. the main thing to know is that usually people in the actual dying process (which has stages that take time) are in no discomfort or distress. they are very involved in inner process (as studies using eec have shown where the brain is activated during this time).we followed hospice advice to just gently swab her lips with water.
My mother lasted exactly seven days like that, and without swallowing at all.
I am very sorry about your husbands grandfather . My prayers go out to you and your whole family. My dad passed away in February at the age of 84. He was in the hospital after a fall. he was in the hospital for 3 days when we reliezed Dad was not swallowing. My dad was not allowed any water any food. Then he went into hospice. it was a total of 7 days with no food or water. Once in hospice , I believe they had him very comfortable. my dad from the day he fell till the day he left us was 17 days. my prayers do go out to you guys.Just tell Grandpa how much love you have for him and how happy he made your lives. i am praying for your family and grandpa. hugs go out to you.. Hospice is the best place for him.. i believe that he knows you are all around him. He is tired.God Bless YOU all.
I am not a medical person but I took care of my mother, who recently died and my father, who died 9 years back. We had hospice in both cases and after my father's death, I realized I knew little about hospice and educated myself about it. Caring for my mother recently, I learned a lot of things had changed with hospice since my father's time. Dad had been given morphine for pain and did not appear to be in pain at all at the end,from his prostate cancer. Mom was given morphine at the end also and I learned that it not only prevented pain but also dilated her blood vessels, helping her breathe, as her heart could not pump her blood well enough to circulate sufficient oxygen. I have also read, in articles and books about hospice treatment that the body may reach a point where food and water are a burden on the body and it is kinder not to try to get (or force)the person to eat and drink. This is so contrary to the gut feelings most of us have that it would be terrible for us to let our loved one "starve" or be dehydrated. As was said earlier, swabbing the lips and/or mouth, for comfort, is sufficient in this situation. I have also read that dehydration can induce euphoria, making death easier. I hope this is true. Hospice is wonderful and can give the best advice. However, I have found, as with all care of the elderly and infirm, that a family member or other close person being present, keeping track of what is being done and not done, tracking medications, asking questions and, per the patient's previously-expressed wishes and values, making sure things are done as the person would have wanted, makes all the difference. Hospice people are overloaded and time-stressed, so a personal representative being actively involved ensures the best care. It's a very hard time, sitting with a dying person, so I wish every person all the best during this time. Even if you are not religious, the hospice chaplain can be a comforting person for you, as well as the dying person, especcially after the person is no longer conscious. Also, keep talking to your father. Hearing is the last sense to go and he may hear you long after he is able to show it in any way whatsoever.
I am 67 years old, and after an echo, I was told that I had congestive heart failure. Then I had a Nuclear Stress test that indicated that the Echo was not correct, and there was no reason to worry. For three weeks I was half out of my mind, waiting for Cardiologist to tell me this information. cardiologist said check back with him after a couple months. Thats not going to happen. I do not get enough from Social Security to make so many co-pays.
Your answer was comforting, skilled, and helped me to understand. When it is my time to go, I just pray that I go quickly. I don't have Loved Ones that would sit around, and let me tell them how much they meant to me. They don't even bother to come around now, and I am alone.
In Short...You gave a great answer.
YOU AND YOUR FAMILY HAVE BEEN ON MY MIND SINCE I REPLY TO YOUR QUESTION.i LOOKALL THE TIME TO SEE HOW THINGS ARE. JUST A REMINDERE THAT THERE ARE MANY PEOPLE PRAYING FOR YOUR FAMILY , PRAYING FOR GRANPA. I KNOW I AM AND HAVE ALL THE TIME . HOPE ALL IS WELL MY PRAYERS HUGS N KISSES TO YOU ALL.GOD BLESS YOU.
I am also going through this with my 78 yr old father right now. Dad has had parkinsons and is in last stages of alzheimers for awhile. He recently got pneumonia and kidney infection and was in the hospital for 8 days. They treated the infections but he was pretty much in a semi-coma the whole time. He went home to stay with my 75yr old mom at their home 4 days ago under the care of hospice. The IV tube is out of him. He has only woke up once in those 4 days for about 10 minutes. He has had no food for a couple weeks but now no fluid for 4 days other than swabbing his mouth. This is what hurts me so much. They are giving him morphine but have quit his parkinsons medicine so his legs are frozen now and will not move. I don't know if they are hurting him, but the uvula in his throat is swollen all the way down his throat. When he woke we tried to give him sips of water and he cried and pointed at his mouth and went back under. He only weighs about a hundred pounds right now . I don't know how much longer he can make it with no fluid. I feel bad saying it will be a relief when it is finally over, but I can't stand to see him like this anymore and I know he's ready to go on to a better place now. The waiting is the worst and I do feel horrible just letting him lay there like that wondering if he is not knowing why we are not trying to feed him or give him drinks. It hurts me watching this take so long...
I've been a 50% caregiver for my 96 year old grandma, along with my uncle since August. She's been paralyzed for several years from a Christmas day stroke. This past summer, she got worse. In august, we got Hospice involved. They said she wouldn't live until her August 5 birthday, but as you see, it's November now. She has slowly declined since August as we tended to her pressure sores, bathing, changing depends, etc... This has truly been a learning experience for me. But last week, things got far worse. Not eating, not taking fluids, staring off into space. Then 3 days ago, she quit responding. She can no longer swallow, she no longer opens her eyes. Shaking her and calling her name get no reaction. Her breathing changes from slow, shallow with almost 15 seconds between breaths to fast hard breathing. we give her morphine, swab her mouth and continue tending to her bodily needs. But this is so terribly hard. My uncle has been so emotionally torn, he had to hand it over nearly100%. So I'm doing most of this on my own. I know she's been suffering, and I want the best for her which includes wishing her to pass peacefully. The last time she could communicate, she told me "I'm very, very, very tired". And I know she wasn't talking about sleep. I feel terrible guilt wishing this would end soon, even though I know she is suffering, and I'm suffering watching her suffer. I'm sitting with her right now; I swab her mouth, hold her hand, rub her head and hair like she likes and continue to talk to her and tell her I love her. I just wanted to share my story.
i am in the same position. My mommom is 96 and has had no health problems. she is at the final days. she has not had any food or drink for 3 days now. we give her morphine and liquid adavan to keep her comfortable. i was wondering also how long. this is heartbreaking, but two nights ago, my aunt and i sat on her hospital bed (she is fortunate enough to be home) and we sang her old songs. she looked right at me and gave me the biggest smile... they still know what is going on... but i wonder too how long...
The length of the dying process is different for every patient. The only thing you can do is be by your loved ones side and comfort them. Remember hearing is the last thing to go. They can hear you! I just went through this whole process with my 86 yr old Grandmother and it was the most horrible experience I have ever endured. She passed away from what they called failure to thrive. She was fortunate to be home with hospice and surrounded by her loved ones just like what she wanted. We cared for her around the clock for 2 months. In the end she lost the ability to swallow, she went 9 days with NO food or water. She slipped into an unconscious state with the "death rattle" about 30 hrs prior to her last breath. In the end there was nothing we could do but give her the morphine for comfort and be there with her. Continue to tell her it was ok to go and the family would be fine. Tell her how much we all loved her and we will all meet again one day. My heart goes out to anyone who has to watch a loved one slip away and be there when they take their last breath. It is something I re-live every time I close my eyes. Stay strong.
I googled this to try to find an answer to the question. Technically, it is in God's hands I see from the variety of answers here. Our 83 year old mom has been 24 days now without food and a little over 48 hours without water now. I have affectionately nick-named her "iron woman". What a privilege to care for her.
I've been researching this general topic since my mother was catheterized about a week ago and then slowly slipped into a sleep state with few seconds of consciousness per day. The information is so helpful, thanks to everyone's personal contribution. Diagnosed with non-Hodgkin's lymphoma last October, treated with chemo and radiation, Mom's last food intake was one week ago today, and it was minimal -- a few spoonfuls of pureed food. Water intake has been through a sponge/swab for a week also. Her fluid output has been approximately 47 ounces during this same period. Hospice tells us she could pass any day now, but we are amazed that her body (feet and hands are still so warm and healthy). She still has the energy to bite on the sponge to extract water droplets. We continue to administer Oxycodone for pain and Ativan for anxiety in addition to the 75 mcg Fentanyl 3-day patch she wears. Yes, this is incredibly difficult to live through, but at the same time I know one day I will see this as the greatest privilege afforded me . . . and her.
I have been caring for my 85 year old Mom for about 4 years now. She has been in a care facility for 2 years, and since the loss of my sister last year, she seems to have lost all interest in life. For the first time in a very long time she has told both my brothers and I that she loves us. She has a stomach aneorism, at risk of bursting and now receiving morphine for the pain. She has completely stopped eating and is surviving on water. Watching this process is the most difficult thing I have ever done in my life and I know that she will not be around much longer. Feeling guilty about praying for her life to be done is the hardest thing to do. She has a rash that is uncontrollably itchy, and there seems to be no remedy for it. Moaning is what she does constantly and I wish it would stop, although I am there constantly I am also haunted by that sound. I cannot sleep well and feel guilty when I leave to go home, but I need the rest. My Mom has been saying for 2 years that she just wants to die, and I had promised that if it ever came to her having to be placed in a care facility that I would help her pass, but I cannot keep my promise and feel really helpless. I am not a religious person however if there is a God, why do our loved parents have to suffer at the end of their lives?
I have been there before in 1992 to sit with, and witness my fathers last breath. He was in a Hospice facility, and they were great in Amarillo, Tx. My mother chose to remain home. I placed her on Hospice close to a month ago. They are somewhat helpful, but it has been mostly on me this go around. She has kidney cancer, that has moved to her liver. She is now completely bedridden, and seems to have slipped into a state of semi consciousness.
I cannot say that it gets easier, but I guess knowing what I am up against helps. My heart goes out to everyone going through this season of their lives. I work two jobs, and I am my mothers primary caretaker. I have seen the kindest acts from God along the way through perfect strangers, and I have seen the opposite from those you think would be there.
My faith remains in God, because I know I have witnessed his presence through my fathers death, and also in preparing for my mothers. So all I can say is hold to tight to your faith, because the suffering only last but awhile, and when everything is prepared in the other realm, it will be perfect timing when your love one is called. Not a second to soon, not a second to late! For your comfort - we suffer because we are allowed free will by a truly wonderful God, but it's only a short while considering the things we our selfs do. Just find a place in your mind to be comforted by the fact that you are human and you too get tired, just as Jesus did, and it's okay. You are doing all you can to keep your loved one safe, comfortable, and pain free as possible - and that is all anyone can ask for.
God Bless all of you - And when we have done all we can do, and we can't do anymore on the account of death, I pray that God will give us all a home in his kingdom, where we can rest forever - Amen!
DNR to my dad was meant for a heart attack. Not to NOT be fed. There may come a t ime when it is safer to not feed him, but the time isn't now. He eats and drinks, not a lot, but, some. He talks to us and jokes around; falls in and out of sleep. This is because we can't sit ther e and not feed him. We can't sit there and watch him die - forcing his body into shutting down.
He has pulmonary fibrosis. We all talked to him thinking he was going to die over this past weekend. He told my brother 'i am not ready to die'. He told my other brohter - I think I have two or three years left. What are we to do, humaninly "not feed" him and let him die. No, we are not doing that. What if God gave him the cure he is hoping for and all we do is give up and not feed him? Where is any faith. When Abraham and Issiac passed away, did their families not feed them to help the process along?
My mother was in hospice for 3 weeks and all we did was give her oral fluids with those green sponge sticks and whatever else she wanted. The nurses were horrified. They said "...you know that is going straight into her lungs" , to which my response was "and the problem with that is...? She is on HOSPICE for god's sake, we are talking about comfort and support, not extending the dying process. So maybe she lived a couple days less than she would have without the ice cream I take great joy in the fact that her last meal, the day before she died, was a caramel sundae (just a few delicious bites) from McDonalds. It was her favorite. And she smiled. And so do I, everytime I remember being with her for that meal and for her last breaths then next morning. People, wake up and smell the roses, everyone dies. How would YOU like to be treated at the end, think about it now and let your relatives know. Fill out a living will, sign a health care power of attorney form. If you have a pacemaker or internal defibrillator, when do you want them turned off? THINK about these things now so your relatives don't have to agonize later.
My sweet grandmother is 104 and dying a slow death. She's lived with her daughter for 9 years. I am her grand daughter. Together mom and I care for grandma now in hospice. She was admitted to the facility on Monday, Oct. 8 for delirium. She was awake for 48 hours. Once admitted to Hospice and medicated Grandma now sleeps for 23 hours per day. She's given meds for the delirium. She's now eating and only sipping small amounts of water. The nurses recommend no fluids being fearfull of the liquids going into her lungs. I appreciate the information about the sponges to moisten her mouth and lips. I believe now she doesn't need anymore food or fluids and we are prepared for her death. She still responds to us with smiles and kisses. She's worried about her 76 yr. old daughter. I assure grandma that mom is doing fine. Grandma can't seem to let go. It's heart breaking to see someone so full of love and life to die like this. I want her to be given morphine but she says she's in no pain or discomfort. Won't the morphine help ease her into eternal sleep? I love my grandma more than anything and can't image my life without her, but her slow death is so painful to observe. Thank you for all the support and for the love of our hospice family.
Thank you all for the information. It helps knowing that my sister and I are not alone. Mom is only 67. I'm on the couch next to her hospice provided bed. Stage 4 breast cancer. She lost her husband of 47 years just 8 months ago. She never really had the fight in her after dad passed. Seven months of chemo just made her miserable. Three days without food or water at this point. This is a horrible thing to watch. Hoping she goes peaceful and, God forgive me for saying this, soon.
I wrote on Oct. 8th about my 104 yr. old grandma. As of today, Oct. 20th, she's gone 10 days without food or water. Today Oct. 20th, is the first day Grandma has been sleeping peacefully all day. The hospice staff couldn't seem to get the meds right. Late yesterday I begged for 2mg. of morophine, but they would only give her 1 and 30 minutes later they did give her another mg. Why don't they understand that I know better than they do when she's in pain? I wasn't asking for much...2mg, really not much. After she received the 2nd dose she slept for 2 hours...I was so happy and grandma slept peacefully. Finally, after being in hospice for 13 days they Drs. got the meds right. Her family can now relax knowing eternal sleep in near. One of the nurses did tell me the longest anyone here went without food and water was 13days. Grandma's never was an athlete or competive person but I think she wants to win this event. Watching her die is the most difficult experience I've every had. I don't know if I will ever forget the pain, discomfort and physical changes I've seen ove the past days. Please take her soon while she's sleeping peacefully.
My 78 year old mother has only had milk and water for the last nine weeks, since her massive left-hemisphere stroke on 8/19/12. Being paralyzed and cannot speak, she gave up on food, meds and rehab after three weeks. The stroke also cause late-stage Dementia, so the Skilled Nursing home deals with allot of very strange behavior. On 10/7/12 Hospice met with me. She began accepting meds for pain and seizures three weeks ago. Now she mostly sleeps. The Dr said she had "weight to loose and is very strong" (water aerobics for 25 years), so she may go in three months. On Monday it will be three months. She is getting thinner and more confused, so a change must be coming. I see her 1-2 times a day everyday, so we have had some great visits. We pray she will finally see my sister, her mom, all her siblings and old friends in Heaven.
I can definitely relate. I have been taking care of my grandmother for the last 11 months with a lot of help from my loving wife. Unfortunately, my wife had to leave for a while and help her daughter. So for the past 7 weeks, I have done this alone. My mammaw has gone steadily down and had her last nourishment just 5 days ago. She is 90 years old, she has lived a great full life, and she's quietly slipping away. It is very difficult, physically, mentally, and emotionally, so I commend those of you that are going through this. Yes, I know. You probably say the same thing I do: I only do what I feel needs doing. Our love for those under our care shines through. We only return what we have been given throughout the years, as much as we can. It's good to know that there are others willing to give also. I send my prayers out to you and your loved ones in this time of need. God bless.
My brother had his feeding tube removed 77 days ago. He has had nothing but ice chips since then. We had no idea he could survive so long without nourishment. My sister has been caring for him in her home along with hospice aides. Everyone is stunned. He's been on a pain pump and morphine was added 3 days ago. It's heartbreaking.
I pray that your brother passes soon and peacefully. I understand exactly what you're going through and it's heartbreaking. My grandmother lived 13 days without food/water and once the doctors got her meds right she went into a sound and peaceful sleep. I was so thankful to our hospice nurse that called us at 1in the morning so I was able to be with her when she passed. I held her, loved her and kissed her , and breathed in her last breath. She was one of the most influential people in my life and now I feel blessed that she'll always be part of me. She's only been gone a couple of months, but not a day goes by that I'm not missing her. Always in my heart xoxo forever.
Thank you for this helpful feed. My 91-year old grandmother is in hospice care right now. She went to the hospital on December 18th. She was diagnosed with congestive heart failure and COPD. They used LASIK to try to deal with fluid build up, but the fix never lasted. Eventually it became clear that it was terminal and that hospice would be appropriate. My grandmother went to an assisted living home on December 28, 2012. The home has been wonderful . . . the owner is amazing to my grandma and my mom who is my Grandma's patient advocate. My Grandma's lead hospice nurse has been great too. On January 29, my grandma had a horrible infection. Things really went downhill from there. On January 31st they were going to start giving her morphine routinely. Because my grandma would likely become nonresponsive, my mom said goodbye on that day. So hard! I would have been there too, but I live 2000 miles away. My grandma has been nonresponsive since the 31st. So for a whole week she has not had anything to eat or drink. They took her off of oxygen 3 days ago. She was heaving as though she was going into the agonal phase yesterday, but then rebounded and her vitals went back to being pretty good. The waiting is so awful. It is so cruel for my mom to have to see her mother like this each day. I know each case is different, but obviously we are wondering how long one can keep living in my Grandma's state. This thread helped. Thank you!
My grandmother passed away a few hours after I made this post on this website on February 6, 2013. The final days were so hard, but I am glad there are online resources like this to help.
I love this website! It has been such a blessing to read all of your experiences and know I'm not alone. I'm sitting with my 85 yr old beautiful mother who suffers from advanced dementia & blood clots in lungs & leg but the strongest heart ever. She is now past the stage of morphine & erratic breathing pattern called cheyne stokes respiration, 8 breaths and then 32 seconds of silence, repeat, for 3 days straight. Talk about heartbreaking. Currently, she is still taking breaths, one after the other. I wait patiently and play her favorite music and talk to her like she's still here because after a week of this "dying process," I'm not sure what to do anymore. We thought she was hanging on till she had a priest give last rites but no, now I think she's waiting to go on my bday in 2 days. My dad died on her birthday. Tradition? Thanks Mom! My other thought is she's holding out for another social security ck to arrive & be deposited. :) Got to keep it light because this was definitely not how I expected to see her go. It's an experience I will never forget and have learned so much about hospice and what to ask for and how to be your own advocate for your loved one who is dying. I am blessed to have spent the holidays with her, feeding her minimally after hospice told me to stop feeding her. I stopped feeding her when I knew she could no longer eat. I pray she has already gone to heaven & her body is only here taking her last breaths. I have been blessed to be her only child and been able to take care of her the best way I know how. God bless all of you who are also going through this experience! I hope I'm this fortunate to have someone sitting by my side if it ever comes to this when it's my time to go.
My Mother Died Feb 12th 2013. She had stage four untreated (her choice) breast cancer. She wanted her last breathe to be taken at home and so it was with my sisters and I and my father at her side... Our Hospise Nurse was very helpful to keep us up todate as to what to expect. However, without food or water it was expected my mother would last 3-5 days - but since my mother never abused her body - organs were strong even with the cancer. She lasted Nine days without food... most of those days unresponsive... its hardest on the once lest behind... but we take comfort knowing she was not in pain and that she was surrounded with love and all her needs were met... it was a strange honor to take care... its really the only way to explain it.
My mother died with untreated(her choice) stage four brest cancer. She died at home as she wanted surrounded by my sisters, myself and my father and a wonderful nurse that came by often to help us understand what to expect. So when she stopped eating and drinking and was no longer respnsive - we were told to expect it could be from three to five days before death. It took my mother nine days to die. My mother never abused her body so it took a while for her organs to shut down. For 19 days my sister and I moved into our parents house to honor her wishes - that she not be left alone and that she reamin at home. Though not on morphone - other nmeds used again her request - my motheses last days were pain free and surrounded with love it was the hardest thing I have had to do to date but in a twisted way it was a pure pleasure to care for her.
My sister is in the last stages of lung cancer. She chose to forgo any treatment. She has not had food for over 3 1/2 months (of any kind) and has lived on milk and water. She now only drinks less than 10 oz of anything and this has gone on for 3 weeks. She is terribly weak, but very aware and still forces herself to get up to use the bathroom. How is this possible? I alternate between awe and horror that this continues to go on for her. She has always been a very private and independant person and I think losing those things have been as hard on her as the physical condition. I find myself asking God if he knows what He is doing, and could he hurry this along for her sake,
@anonymous caregiver answer above. My mom recently passed away. I watched her not eat for a week and a 1/2. I pleaded with God to take her but I came to realize that I was not in control of her demise. I thank God now that her suffering is finally over but my anger of how he could let someone suffer without food day after day, watch her body decline, will always be a mystery to me. I'm so glad she is at peace now. My thoughts and prayers go out to the sister who is going through this same experience. You don't want to lose your loved one but watching them suffer is truly heartbreaking. Stay strong and keep your faith that God has his own plan.
Thank you for this post. It has been so comforting. I am currently sat at my beautiful Grandmother's bedside as she is very sick. She hasn't eaten or drank in 2 days. She is in the final stage of Alzheimer's and I just feel she is ready to pass. She is at peace and I just hope she goes quietly whilst sleeping. Her daughter, my aunty is currently on a flight over to say her goodbyes. I just hope she makes it in time.
my mom 62 yrs old, had a stroke 6months ago, she has never spoke or responded to us since then, she stayed in a coma for 6 weeks from it and then since she has oened 1 eye but has not followed commands, she looks around. Doc said she is gone and will never recover from it. We have put her in hospice and 4 days ago d/c her tube feedings because her stomach is shutting down. They called also on in to say our goodbyes . She seems to be a litl more alert the last 2 days, can this be? I have often heard" its the calm before the storm", is this a process they go thru when w/o food and water and going thru the stages of dying?
I wish I had answers. My wife is 54 and as of today she has survived ovarian cancer for 5 years and 8 months. On 2/27/2013 the doctors said she was terminal and had a few days to a week left. Her entire small and large intestines were inundated with cancer with multiple blockages so she could neither eat nor drink. Her abdomen was distended and a bowl perforation appeared eminent. Regarding the time she had left, the doctors weren't anywhere close.
We have been prepared for this to happen for over five years and we are ready with no regrets. We prayed each night that she be allowed to die in her sleep and in short order.
I brought her home on 2/28 and had hospice provide a bed and an automatic pump for the pain med, (dilaudid). It was like pulling teeth but I got them to agree to allow me to give her one liter of sodium chloride per day to keep her hydrated. The first 3.5 weeks went well as she was in no pain and comfortable. She was awake, alert and with assistance, could walk to the deck. Per our request the hospice nurses only came by once a week to check on things. I am the same age as my wife so I am able to bathe and change her, change the dilaudid cartridges and batteries, and do the IV.
At the end of week three her pain increased significantly and the roller coaster ride began. I had to stop the sodium chloride as her body could no longer process it. The doctor increased the dilaudid to no avail and then ordered oral meds, (phenobarbital, methadone, ativan and a steroid). She would be ok for a few hours and then in severe pain for a few hours. The doctor ordered another increase in doses to where I was placing the medicine dropper in her mouth sixty plus times a day. Ridiculous.
Finally, in addition to the dilaudid the doctor decided to order concentrated phenobarbital and methadone for manual IV's but said my wife would have to be admitted to their hospice center. After pulling more teeth he agreed to let her stay home and to let me mix and push the IV's. (To my surprise the visiting hospice nurses are not licensed to push IV's even though it's not rocket science.) For the past five days I have been giving her two manual IV's every four hours around the clock and she is now finally comfortable and in no pain.
I came to this thread searching for answers as my wife has gone 46 days with absolutely no food and 17 days without water, aside from swabbing her lips and mouth to clean out the residual from the oral meds. I asked the doctors how this can be and they offer that every individual is unique and it is out of our hands. I pray to God to give me the strength to stay with it but it is becoming more difficult as each second ticks by. I work out of my home so I am able to spend a lot of time talking to my wife and putting on her favorite music and TV shows hoping it is true that she can still hear what is going on. My son comes by every day and his wife and the grandkids have been coming by to visit once a week which is great. But now my Son and I agree that the kids should not be left with visions of what little is left of her. I love my wife of 34 years without limits and will stay by her side until the cows come home if that is what it takes. If only there were some answers.
At least it felt good to put this down in writing and vent a bit. I am sorry for being so long winded.
I am so glad to see this post regarding the guilt and sorrows relating to a loved one approaching death. My own father who is 74 years old has been without food or water for 7 days and still has urine output. His palliative nurse said looked like he will live for another few days. My mum is in the unstable mental state where she consistantly wanted to feed him and putting feeding tube in him. And my sister who I respect and look up to for all these years lost her conscious mind actually agreed with mum. I was so mad, I have been taking care of my dad for last seven months at home since he had fall and hospitalized and went to long term care home and then finally, after so much begging that he came to my home. I had seen him suffering from choking every single meal no matter how thick the fluid and food were, and I have witness him becoming more uncomfortable and his eyes looking at me with sad and begging motion indicating that he is really tired and wanted to go. He had last stage of lewy's body dementia. I just couldn't accept the fact that they wanted to re vibe him just because they felt guilty of letting him dye of starvation and dehydration, but really, have they not seen him suffering for so long and is ready to quit? I am very emotional and upset at this moment and reading the postings here kinds calmed me down and gave me inner strength. Like my husband said, don't care of how other people say or think, simply stay focus taking care of dad for his last few days would just be all right. I am just afraid that dad's peaceful passing away is gona be disturbed with this drama and silliness and he would end up suffer longer and more painful death in the end. I am so torn apart, that I am so afraid this drama would happen and my poor dad would be put into a tube and live lifelessness for years to come, it torn me apart just by thinking of that... lord, help me please.
I am currently sitting by my Mum's bed in the Nursing home. 10 weeks ago she had another major stroke that affected her swallow reflex, the hospital put tubes in she pulled them all out. After a week or so the reflex returned but not fully so she was fed with thickened food and then moved out to nursing care 4 weeks later she was 47 kg. I received a call 4 weeks ago to say she had another TIA and I needed to come now. I flew half way across the world to be with her. She has not eaten for 4 weeks and doctor withdrew the sub cut fluids 6 days ago. I am not wishing her away in fact I am in awe of the resilience of the human body, but its time to go now please lord. Thankyou for all your amazing stories and Information. Prayers gratefully received.
I sit here in the middle of the night with my 87 yr old father who is on hospice care. He has been unconscious for over for days with no water or food. My mom will not leave his side and will only sleep if one of use kids sit up with him. She is afraid he will pass and she will not know. I've worked in the medical field for years and be with others during the dying process but I never imagined it to be so heart wrenching. I know these days can not be replaced but I so want to run home. I'm tired so my hero must be so tired too! How do I tell my college children to keep on living? One is preparing for a out of country mission trip and another is interviewing for an out of state job? What do we do?
I am currently amazed that my other of 75 years who has been living with Vascular Dementia and some kind of malignancy for 2 years now. but the amazing thing is the last 6 months. Mom went from 145lbs to 68lbs, she is literally skin and bones. She has now gone without any food or fluids for 12 days and is still here . I along with one of my daughters have been caring for her all along. We have hospice here at our home and the staff is also quite astonished that she is alive today. We use the mouth sponges and she is not on any medication as she seems quite comfortable and not in any distress what so ever. I sit with her , I have given her permission to go... my Dad is in Heaven waiting for her yet she will not give in. I have read everything and no where does it say that a human can go so long without any fluids. she is completely dehydrated yet has no fever nor distress. She is a skeleton with skin and like I said 12 days and counting! So there really is no answer. It is apparent to me that the will of a human can overcome any and all odds. If Mom can go this long and I mean what I say when I say SKIN AND BONES, then this proves that the human spirit is far more complex and strong than we give credit for! As a caregiver I know first hand that we may suffer and feel helpless but it is and has been the most rewarding thing I have ever done or will do in my life! Hold on Mom let's see how long you can go!!
I am sitting in a long term care facility wit wit grandpa as we speak. Now 78, he has dementia, congestive heart failure, had a stroke and a hip replacement. The last two which have happened in the last two weeks. The last time he had food or water was 5 days ago and it was only one spoonful because he is completely unresponsive. 4 days ago we got the call saying that he wouldn't last the night for sure, they thought even the hour was a stretch and he is still ticking along today. He is on morphine and off oxygen as of 3 days ago. The pauses between his breath r getting longer and longer. I fear that he is suffering although I'm to with the morphine he is likely not feeling anything at all. It is my parents 28th wedding anniversary today and it was my my mom's birthday 2 days ago, im thinking maybe he is waiting for these dates to pass before he goes. My heart is breaking sitting here watching him pass but I think it is important that he knows we support him and are here for him through his passing
My Mom is 87 was a very independent soul, 7 weeks ago she feel at home, hit her head, two weeks later she had surgery to reduce the pressure of the bleed, she has been in two hospitals and one rehab facility but in the end we brought her home. She has been without food or water since Friday, today is Wednesday, it is heart breaking to watch, I too pray that God will take her, she is receiving morphine and a Ativan every few hours. My sister and I are caring for her along with some wonderful hospice nurses, I thank them every time they visit. It is the most difficult experience I have faced in my 57 years.
I am sitting up reading this page looking for answers to ease the terrible guilt i feel that has stopped me sleeping for weeks. My mum of 62 yrs died of a grade4 brain tumour 10 weeks ago, she spent the last 6 days in a hospice without any food or water apart from those lemony sticks you rub round the mouth. On day 3 she gained consciousness for a few minutes and asked me for a drink which i couldn't give her as it would have gone on her lungs. I feel like i killed her because i let her dehydrate, medical people tell me the body shuts down and no liquids is normal at end stage cancer but i feel i could have done something to stop her dying. I replay it over and over punishing myself. Reading everyone elses experience of the same thing makes me feel a little better i guess. Wish i could forgive myself
My heart goes out to all of you who has responded to this post. My siblings and I are currently going through this situation with my 87 year old mother. She is in her 3rd day of no food or drink and I believe she is under 80 lbs. She has both Parkinson's and dementia and has been in declining health for about 6 years. She has been under hospice care for over a year with our family being at her side 24/7. It is very difficult to say goodbye but I do not want her to suffer anymore. She is the strongest person I will ever know, she has endured a lot of pain and suffering throughout her life.
I have been sole caregiver for my 97 year old Mother in my home for 10 months. She has been in poor health for many years and has steadily declined. She stopped eating for 3 days then woke and asked for food. She ate 1/3 cup of egg drop soup, talked for an hour, went to sleep and hasn't moved, talked, ate, or drank since (I swab mouth occasionaly with wet sponge.) It has now been 18 days since that happened. I knew she was strong willed but how much longer can this go on. It is very difficult to watch not knowing if she is feeling pain.
I have been caring for my mother with lung cancer at home for the past 5 weeks. She ate small amounts of food until 18 days ago. Then she was drinking water until about 4 days ago when I started using mouth swabs. I'm a physician and I had no idea she could still be with us at this point. It is hard to watch and I've had to stop working for much of this time. I appreciate the help of hospice, but frankly you're mostly on your own if you decide to die at home. They only come twice a week to the house. It's too bad our country will pay for months in the intensive care unit but won't pay for a home health aide at the end of life if you are in your own home.
My Dad is 91 next month. Not eating or drinking anymore. He has dementia and everything is shutting down. Its so sad because I believe that he can hear us and knows we are there. He tried so hard to answer us but can't. and looks frustrated at times. I don't know how long he can last like this. He has a strong heart. However its breaking our hearts seeing him go thru this. We did have Hospice come in. He gets Morphine (LOW DOSE) in Morning and nite so they can change him and get him in and out of bed with no pain. Does anyone know how long he can go on like this considering his heart is strong and he has no other problems other then dementia.
I am wondering this too, my dear sister is only 57, and entered hospice today. Her intestines don't work anymore, and she will only be on pain meds, no food or water. I have said my goodbyes, and am wondering how long she may last :(
My 97 year old Mother passed Feb. 25 after not having food or water for 25 days. I moistened lips and mouth with a sponge several times a day but that was hard because she clamped her mouth tightly shut as soon as I touched it. It is hard to care for someone all by yourself when they cannot move at all. It is comforting to know you did all you can do for them. All caretakers remember to let them know you love them. Twenty five days without water or food - she was a fighter most can't go that long.
My father had been sick for a while prior to his cancer which came on VERY fast. The cancer is what took him in the end, he was 61. My worst fear during these 5 , yes 5 days only was the lack of fluids. I could understand the lack of food to some extent... But fluids?!? After doing some research and reading some of these stories I now understand. The body can't handle these intakes anymore. Since the body is shutting down, to have to process the fluids or foods is way to stressful on the organs and causes severe stress. Ultimately making it way more uncomfortable for the person. I hated the fact they were doing it at the time. But one I understand if they did what I wanted at the time, my Dad's death would have been very painful. Thank you hospice, my Dad slept well until he decided to go.
I have read most of the above entries ---- I spent 11 days and nights of pure hell talking to my wife in hospice while she lay there dying. Her mind was clear till the end and wanted it over the first day in hospice.
We had three months to get our heads wrapped around the fact that she had terminal colon cancer, We were prepared for her death
at age 82 we had a great marriage and could accept the end . WHY IN HELL DID WE HAVE TO ENDURE 11 DAYS OF PURE TORTURE THAT COULD HAVE BEEN ENDED THE FIRST DAY IN HOSPICE ?
It is time to change the rules of dying ---- after reading the above
entries I am more convinced than ever that the rules of dying must be changed.
I have a friend with Alzheimer in a place at $8000,00 per month with no hope of recovery from this disease ---- this this too should
not happen . THERE IS A BETTER WAY TO LEAVE THIS LIFE WHEN WILL WE MAKE IT PRACTICAL AND LEGAL ?????????
My husband was diagnosed with cancer at the base of his tongue that has spread to his liver, lungs, spine and chest two months ago. He stopped eating a month later and is now under Hospice care. Three days ago he abruptly stopped drinking any liquids and sleeps most of the time. My son and I became frantic and made demands for feeding tube and oxygen but they refused. My husband will give one word answers and we remain hopeful for what little time we can get. We show him a lot of love and talk to him. He moans from time to time but says he is not in pain. We are hopeful for at least one more week. He doesn't seem to give up yet and we keep him comfortable and have reduced the morphine. Seems like a catch 22 because we were told that the morphine breaks you down. He also takes meds for anxiety. It is rough and we have all lost our appetites. But we know impending death is inevitable and thank God for being blessed for the years we had him. He is 81 years old.
My husband is 69 years old with pancreatic cancer IV found in October 2012. The doctors gave him 3 months to live. Now after 19 months of chemo and traveling in our RV and enjoying the good with the bad, he is in Hospice. When the doctors told him at that time that he had a painful battle ahead, he answered, "Christ gave me a cross to bear and you gave me the door to carry it through. If I do not go through that door, it will be as if I am committing suicide. I chose to follow Christ." That is the attitude he still has for he stopped his smoothies last week and last night he said he wants no more water because "my body knows better." He wants to continue as he has been doing concerning the pain. HE asks for the medicine when it becomes unbearable. He wants those moments even with the pain so he can be alert and communicate with us and God. When he is unable to communicate, it will be time to give him the pain medicine all the time and allow him to die.
A little nun called Mother Angelica summed it up very well: Love of Jesus is so strong. It doesn't take away all of your sorrows and trials, but it gives you the endurance and courage to have moments of JOY in the midst of them." How true this has become for all of us. JOY is not happiness which is gone after the moment. Joy is that little moment found among the pains that brings a small tender smile. Last night in all my husband's anguish, he said with a trying smile, "I love you." Those words became very special although I heard them many times. When we go to Heaven, we no longer have Faith and Hope for we no longer need those virtues. Love is all that remains. Let your love ones give you that JOY that comes with eternal LOVE!
My mother was put in hospice care at the beginning of July with terminal cancer. She had stopped eating almost a month before that. She has been in the nursing home for 2 weeks tomorrow. While she is weaker and more tired everyday she is still with us. We aren't sure how much longer she can go like this. She does still drink a little water everyday. She cannot walk on her own and her legs/feet are extremely swollen. I was looking here to find out how much longer we may have with her and see that every situation is different. There really is no way to tell. Unfortunately we are waiting for the inevitable.
I'm caring for my 38 year old husband, he has brain, spine and throat cancer. Found this while looking for answers as I'm having a hard time seeing him in the condition he is. We are caring for him at home and we do have hospice help. He hasn't had anything to eat or drink in 4 days. He's on morphine and some seizure meds to help him. Though he looks comfortable, but it's hard on the family to see him in this helplessness state. Feels we are not being able to do anything to ease this. Waiting is the worst.
My wife and I are sitting tonight with my 89 year old dad. Emotions are terrible. No water or food for 6 days. We just pray the Lord will let him go peacefully soon. We can't bear to think he's suffering. Long days and nights. Bless you all as care givers.
I just googled to find out what I could. Our 83 year old Parkinson's affected father has been in hospital for 3 and half weeks after a series of falls. His arm got infected from one of them. He has been just drinking sips of water and eating a tiny amount of icecream even though a barium swallow test said he should not have anything orally. The physician said 'at this stage food in the mouth is a comfort'. Even though he could aspirate. We go from day to day thinking he is doing better to thinking he is on his way out. One day he can talk a little, the next he talks babble and he is lost behind half mast eyes and fever. He has lost so much weight and he was not a big man to start with. The nurses say he could go on like this for weeks. It's truly awful for him and us. He can't do anything for himself at all. He is being discharged into hospital level care at a rest home with hospice looking after him. We are all worn out and emotionally wrecked as we try and deal with our own lives and comfort our mother and help her organise hers. Reading all of the answers here has made me feel like we are not alone in any way and all over the world there are people around hospital beds praying their cherished ones will leave their uncooperative bodies behind soon rather than slowly starve and dehydrate to death.
Does not seem like anyone has done their medical homework, in patients that have congenitive conditions, not being able to swallow, like in elderly, yet No cancer or other heart failures or brain, It Is the most painful way to die, they look asleep, but they are not...they suffer like you or I would without food or liquids, look up the girl that survived through 8 days of this torture.........ugh
an update to my post above. My father finally passed after 5 days with no fluid or food- he turned it away, contracted aspiration pneumonia and died yesterday. When he decided to go, it still took that amount of time. In the preceding 4 weeks he had been living on sips of water and a few spoons of icecream. He was around 50kgs or less at the end. My sympathies are with you all and I just hope that if I live to my 80's there are changed rules around speeding the process up when clearly there is no possibility of change for the better. Those last days of struggling to breathe will stick in our heads forever. Kia kaha as we say in New Zealand, 'stay strong'
My wife has final stage Parkinson's disease and weighs only 32 kgs. She has had enough and has decided not to eat at all and drink only very, very sparingly. Feeder tubes have been removed and I feel totally helpless and useless when it comes to doing something to help the person I love so much that I am bursting with grief. She is 73 and 8 yrs older than I but is everything that matters in my life. When with her I am strong for her on the outside but on the inside I am dying with her. Wish to God there was a win/win solution but there isn't. Thanks to all of you who have written in on this feeling and thoughtful article.
my mum has been on a peg feed for around a year now and the only liquids my mum can take is thickened fluids which she hates and calls out for water,Most of the time my mum talks about nothing else,as although she has vascular dementia,my mum is lucid most of the time.I fully understand that the advice gien is for my mum's best interest,but usually the people who give out this advice don't have to sit with someone for 3 hours a day,while my mun pleads for water.To complicate matters my mum is diabetic.
Lying in a bed, next to my 87-year-old mother in a hospice facility. Tomorrow will be 9 days with no water, IV, or food. She was in the hospital with the flu, then just decided she would not take anything else into her mouth. Period. To give her water would require forcing her jaw open, which we're not going to do. She's ready to go and be with the man she was married to for 65 years. I pray she goes soon. This is excruciating. She, too, is on morphine and Ativan, and resting peacefully. But it's still hard to watch.
You guys are amazing and reassuring to me! My mil returned home from a rehab facility last week. Last Monday she refused to open her eyes but would respond to our voices. She agreed she was tired and ready to go back to my house and be comfortable. She is talking again and drinking sips only. No food for seven days. Today her color is different. But only God knows. Hospice is now involved. I'm Really emotional right now. I understand the cycle of life but the overwhelming demands of caring for my family and a dying loved one at home is difficult. However, another emotion is blessings bc she loves it here and iam honored to be the one caring for her with dignity right up until the last.
My mom is currently in hospice with terminal metastatic breast cancer in her bones. She went to the hospital 9 days ago on her own will because she wasn't eating and had terrible nausea/diarrhea. I talked to her Tuesday and she said she loved me. A few days later she aspirated on food from her feeding tube and was admitted to the ICU. They had to Intubate and vent her. She never told me she was dying and I guess I was in denial. She stopped putting out urine, her electrolytes were out of whack, she was septic, and the CT scan showed the cancer spread. I had to make the painful decision to take her off life support. She was entered into hospice 3 days ago. We, including nurses, are surprised she's still here. She's young (51) and has a strong heart. I'm only 28 and this has been the most painful experience of my life. I feel helpless distraught. Waiting is just so hard. She's comfortable, but she's had such a hard life... I just want her to be at peace. I don't know what I'm going to do without her. :(
I don't know if this will help anyone. My father died while in hospice after about 18 days. Prior, he had strokes and became more disabled during a 4-month period. He required intense 24/7 care with eyes on, as he was very agitated and did not sleep. He was in his 80's, but very strong, so he was a handful. We communicated with him as if he was "normal," and I believe he appreciated it. When others would "baby-talk" to him, I would kindly ask them to not do it because it was just so wrong for him (and annoying to us). One of his friend sang him nursery rhymes, and I just came undone over it. PLEASE treat people with respect, and give them the support they need emotionally. My dad became unresponsive and died 6 days later. Before that, he ate and drank a lot, as he had no sensation of being full because of his brain damage from the strokes. He tried very hard to communicate with everyone, and it was traumatic for him and us. There are signs of impending death within days and hours, the first for me was the feet turning purple. He died about 30 hours after that happened, and from what I have heard and read, this is a strong indicator of when to expect death to arrive, and also, the breathing pattern as it becomes longer between breaths. We gave him ativan and morphine to keep him comfortable, and this was very important to make sure that no one compromised him on his medication schedule. He was also given Tylenol and phenobarbital suppositories for fever and to keep him calm and comfortable. I played music for him via headphones on a low volume so he didn't have to hear people yakking all around him, mostly hospice nurses talking on their cell phones, even when asked not to. We had to "fire" the hospice team and get another in in the last hours because the first hospice company, it was all about them, not about my father, and they stole time with him from us, with all of their ridiculous protocol. We called another company, and the house was calm, they listened to us and made sure my father had a quiet ending, which is all he really wanted (as he had expressed to us in his healthcare directive). Now, a few months later, I am with my mom in hospice, but she is easy by comparison to my dad (they have been divorced for decades). It is very difficult to go from one hospice experience to another, but my best advice is to carefully screen the hospice company (avoid the one with a "V") and make sure that all people, even other family members and all friends, comply with your loved one's wishes. If they don't, ask them to leave. This is not about them; it's about the person dying only, no one else. I learned the signs of how much time could be estimated to be left by what I saw and learned from others who knew, and if you just focus on the patient, everything else falls into place in its own time, but it is very exhausting and haunting. Just know that it will end, and hopefully you won't have back-to-back episodes, which can really ruin whatever life you once had. It is a time to start over, and that's alright. You do find out who your true friends (and family) are at a time like this, Try not to be too hard on yourself or burden yourself with guilt. Do what you believe is right, always, and what you know your loved one would want. The death process is remarkable and unforgettable, obviously, but the crisis part and the hard work all pays off in the end; I promise. Just go with it, try not to fret too much, and ease the mind of the dying person's fear with love and soft music and a calm environment. That's what I tried to do, against enormous odds, and it all came out fine. Follow your heart.
I feel for all, When it comes time to be in these situations it's rough, regardless of who of is. My mother was diagnosed with stage 2 esophageal cancer. A year ago she weighted about 150 lbs. At the beginning of the treatments she had lost a little over 30 lbs. She went through 26 radiation and three weeks of chemo treatments. Five weeks later she is about 99 lbs. she eats very small amounts because she keeps throwing up, some time she says it tastes like poo smells and drinks at the most 20 oz. of water per day. She is on Hospice now for three weeks using morphine for pain and pain patches which have been doubled twice. Through all this she is still finds the strength to go out on the porch to smoke. Her strength is slowly diminishing. My wife and I have been caring for her in the winter for the last 5 years in Florida. We just wonder how long she can go on with the little she eats or drinks. We get frustrated with her smoking when we think she should give it a true try since we are giving up our life to be here to help her and that makes us feel guilty. Thanks for allowing us to comment.
I work with home health care and one of my clients has been without food or water for 26 days... On Friday no one was expecting her to live thru the weekend. Here it is Sat evening and she is still with us.. Her feet haven't started mottling or she isn't running a low grade temp. 26 days is a very long time. She has been on hospice for about 4 months now but I see her lasting atleast another couple days to a week... Please say a prayer for this family and her that she passes with no more pain... God Bless all of you that have to go thru this. This lady is a client but ive worked with her since Nov of last year. Ive gone thru this with my own mother and my grandmother... Very sad
I thank you all for your input. My husband was diagnosed with stage 1B cutaneous t -cell lymphoma in 2007. He has gone through about 15 different chemo and radiation treatments since then. A PET scan in January revealed tumors on his liver and its been a downward spiral since. He slowly because weaker and had issues with the food I cooked not wanting to eat his normal foods. April 1st he was admitted to the hospital for a skin and blood infection. His hospital stay lasted 3 months. He stopped eating solids around April 15th and stopped getting out of bed. At some point they put in a feeding tube which he pulled out twice. A later Pet scan revealed tumors on his liver, kidneys, thyroid and brain, he was at stage 4. They Drs. Gave him a week to live on May 20th. He came around and woke up, they said it was a surge. Long story short right now he is at a hospice center. He hasnt had any water other than drops from the sponge stick and Ensure or shakes in a week. Because of his skin breakdown he is on high doses of Fentanyl and Adivan for comfort. He too is skin and bones. I have asked how long can he continue like this and begged God to take him. I feel horrible thinking this way but I have seen him deteriorate for the past 5 months and looking at him like this is killing me. This is a nasty thing to have to witness. We were together 36 years and went through many tough times together, this is the worst. I pray that God takes him soon.
My father had Parkinson's disease and was in a nursing home before three years. He had a stroke and was unresponsive, so since he had a DNR hospice came in and they kept him comfortable with morphing but he had so food or water. He was 77 years old and he died five days later. The hospice nurse told me she had just had a 95-year-old patient who lived for seven days without food and water. It can vary a lot, but I've read that 5-7 days is the average.
My mother has cancer and had a stroke a year ago. Cancer treatment was not successful. She recently had a seizure and has been pretty much non responsive since. This is the God's truth....we are ON DAY TWENTY of no food and mere trickles of water to wash her meds down a feeding tube. It is horrible and I so want it to end for her. I'm trying to keep her at home till the end but didn't realize how hard it would be between the bathing , managing her meds and dealing with those awful bed sores and the awful smells from this cancer. I feel like I'm ready for a full blown anxiety attack.
I WORK AS A HOSPICE NURSE FOR 10 YEARS AND COULD REMAIN VERY STONG AND SUPORTIVE. NOW ITS MY HUSBAND AT END OF LIFE CARE AND IM A BASKET CASE. WE PUT OUR LOVING PETS DOWM BUT HAVE TO SIT AND WATCH OUR LOVED ONES LINGER.THANKS TO EVERYONE FOR YOUR STORIES IT HAS HELPED ME
My grandmother is 91 and a half and she is prone to aspiration pneumonia and gets infections every month or two. She just got out of the hospital and they wouldn't even allow ice chips or mouth swabs, because they said she had no gag reflex at all. I did some research and 37 percent of healthy people have no gag reflex at all, so I am trying different ways to hydrate and feed her, which are working so far. I found out I could feed her nutrition drinks through a children's medicine syringe and could give her 1 ml at a time, which has not caused any aspiration at all for the nutrition drinks. I also found out that water, even if aspirated, doesn't cause pneumonia 90% of the time. I give that .5 ml with a pause in between and I use spray bottles. I found that the spray bottles don't require her to swallow at all. It just disperses in her mouth. These methods seem slow, but she has been able to take in 20 to 40 ounces in a day through the syringe method and put on 30 pounds using Compact Boost and eggnog. She likes being alive and we are still enjoying each other. I say this to anyone who is reading and isn't ready to let go, but they say you have to. We also put a humidifier on her oxygen machine and that moistens her throat all day long. That and the spray bottle are comfort measures. I don't use thickened drinks, because the thickeners make pneumonia last three times longer. I find things like ice cream, eggnog and smoothies have been thickening her nutrition drinks enough to give at the doses I am giving it. Water, she still coughs sometimes, but I am only giving a tenth of a teaspoon at a time and she still likes getting it.