My father is actively dying but my sister blames me because he no longer wants to eat. Any advice?

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My father is actively dying but my sister blames me because he no longer wants to eat. Any advice?

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Well, off the top of my head, if I were in a situation like yours I would come right back with "OK, you can do it better? Come one, let's see you do it!" After all, if you are not doing the work, you don't have a vote. I've found that a good comeback can put a stop to bad behavior. After all, they can talk to the doctor, right? Inform themselves about end of life?

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I like to look at multiple faceted approaches because they tend to touch in the different dynamics of what is going on here.
Data wise, get some medical information from your doctor or a professional source that normalizes that appetite decreases in these instances.
Secondly, realize your sister’s anticipatory grief or more accurately her resistance to feel it is displaced on you. Learn to practice detachment, observing your sister’s behavior, dealing it for what it is, and not trying to change her as it’s impossible anyway. Try to shift the conversation to how difficult it is for her (and you?) to watch his decline in eating and awareness.

if these don’t help then see if you can try to set up a schedule so that you both aren’t with him at the same time.

it is normal to regress in behavior and emotional age when anyone is in grief like they are.

hope this helps.

Mark B. LCSW
Former Hospice Social Worker

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This may be more about denial of the impending death instead about what you are/are not doing. I take it they do not live near or visit often, so you have to consider they have not seen the decline first hand. As well, if it has been a real lengthy period of time since last visit, they may visualize a father who was in much better shape than today. It may hard but try to ignore it.

If this is just another bump in the road of a long washboard road of problems in the family - then given them warning in advance when you talk -- I don't want either of you to tell me what I am doing/not doing right. This is hard enough for me to listen to drs and then have you both tell me what I've done wrong. The update on dad is blah, blah, blah. I'm doing the best I can here. Goodbye.

Clearly if he's in hospice, it's time for them to come if they plan to see him again in this life. Tell them it's time and tell them while they are visiting, they can see first hand what is going on and ask the doctors all of their questions since he already has answered all of yours.

If they decline on a visit and mention ANYTHING at all about you withholding food or not feeding him appropriately, then just say...I'm very puzzled by that comment... to believe someone is causing harm to our father and you not making a visit or doing anything to rectify the problem almost seems like neglect on your part.

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Love your last paragraph. What a wonderful comeback.

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Your sisters are upset with their father dying and are searching for blame..they haven't accepted that fact so thats the best they can reason is its your fault...maybe you can have them talk to the hospice workers..they see the stages of dying all the time...If you can..find support from people who understand your side..im on your side..being a caregiver...you are on an island by yourself until someone wants to point a finger at you...otherwise..where are the rest of the family members when you need them?..They don't want to deal with it..so you stepped up to care for your father...congrats to you...Stay Strong.

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It’s normal for a person in the end stages of life to refuse food and drink. It’s no ones fault. It just is. Tell your sisters that if they can do better to come on over and have at it.

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It is normal, yes . But if you are ill and don't eat you could starve to death. Problems happen. He may not be dying. When you say he is in Hospice Dr. will not treat. So cancel Hospice. It can appear to siblings. But you do what you know.

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I have met many like your sisters, people who believe we should force food on patients, even if it means a feeding tube. I think that is cruel, but that is just my humble opinion.

My DH reached a point where he couldn't eat one bite as he was just not hungry. This is normal and it is the body shutting down and preparing for the end. Since your father is under Home Hospice, I am sure if they wanted your father to be fed, they would tell you your options.

I know it's difficult, but try to ignore your sisters and their ignorance. You are doing a fantastic job in not forcing your father to eat. It only delays the inevitable and can even cause more pain and discomfort because whatever goes into the body must also come out of the body. By allowing my DH to stop eating, he also stopped needing to void which was a blessing for him.

Hang in there Angel, you're doing great!

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You don't force feed. Just find out why. My mother said she felt full. But it was from slower Digestive system. Caused by Thyroid. You have to find out the underlying cause. It could be chain reaction. If you are responsible person to help when they can't, then it is your moral duty to find what is causing illness. You can't have the responsibility and then complain. But siblings should help. This is happening to much. Saying what goes in must come out is stupid. Take care of your parents. And like I said Hospice are brain washed. They could turn him into a zombie. Do everything first. I know 24/7 is hard. I only had 3 hrs sleep.

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How old is your father? Be careful with Hospice. Their job is to help you die, not live. They give the patient something to " make them comfortable ". Which makes you too relaxed. Effects the brain. Then to weak to eat. Not hungry. It also slows body organs slow down. Which includes digestion. Give him ensure. Get his nutrition levels checked. Could just be an imbalanced level. Or something could be imbalance. Heart failure makes you tired. To tired to eat. Heart failure in what way? Fluid build up? Related to another problem? Blood clots? Circulation. Keep him moving. Not run but walk. Eat something. Ensure and vitamins. He needs family. Best medicine. Show pictures. Record his history/ story. Don't need help to die. Make sure he is happy. He showed signs? Probably from illness. Not death. Hopefully everything gets better. You might try cancel Hospice. I would rather kill myself than Hospice assist. Take father to another Dr. could be medications that is causing the heart problems. But Hospice people are very good at convincing you. I would take chance to put them on hold. If father has taste bud problems from side effects from meds. Try salty foods. Rinse mouth and spit. Drink water/fluids. But not too much. Drinking too much can be overload and cause brain damage. Keep moving. His digestive system might be stopped up. Good luck. You are doing best that you know. But try other options. I have the sibling problems too. As soon as I saw Hospice I thought that it's probably added to the problem. He needed right Dr. to rule out underline problem of symptoms. Could even be Thyroid.

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I only say my comments based on experience. Even I had digestive issues and didn't feel like eating. Depression and don't feel like eating. There are so many reasons for not eating. Even the dog had got diagnosed as weeks to live and she only needed water. And she lived years.

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I can't tell from your post if you live with your dad or just near him. When your sisters and their fingers arrive, leave. Make yourself scarce. Go for a walk. Take some private time. Do not be their emotional punching bag. They can't point fingers at you if you aren't present. Ignore them. That will drive them crazy.

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Talk to your doctor, and does your father want to be fed or let him stop eating and sedate him. Dr Jack Grenan PhD

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Thanks for your interest. My father makes his own, well-informed decisions. I believe strongly that it is not my place to impose my own will, only to carry out his wishes.

(6)

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Just ignore them. Stay stone-faced when they attack you. You don't have to explain. You know in your heart what is best. They are not there...they do not know. They don't know how hard it is for you. It's so unbelievable that a family member who is supposed to love you and be there for you no matter what, can be so selfish and cold-hearted...but it happens more times than not. Very disappointing...but let it go. It's not worth it.

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I appreciate your advice. Over the years I’ve gotten better about letting their nonsense go, but this particular episode was like a punch to the gut. I believe in forgiveness but it’s going to take awhile for me to get past this one. And as a general update, I did speak with the hospice people today and they are reaching out to my sisters and mailing them booklets with information on the dying process.

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You should have the hospice nurse talk to your sisters and educate them on the death process; eating and drinking decreases and/or stops altogether and there is nothing you can do about it. Each day my father got worse and towards the very end he wouldn't drink either. Hospice told us what to expect. They said not to try to force him to eat or drink when he does not want to anymore. It is sad that your sisters don't understand this. Only when you experience it firsthand do people really get it. And I would "double down" on your explanation to your sister and not be so diplomatic, she doesn't deserve it. Send her a link to the death process, maybe she will glean some information on what happens, although sounds to me she just likes to play the blame game, while sitting back doing nothing. Cut your losses and don't talk to her, that is what I would do.

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Nothing compares to learning like on the job training. Since this will probably be repeated, I'll just say YOU MUST teach people how they are to treat you. Schedule each one to come once a week at a meal time (with the food since they know it all) and spend some quality time over lunch or dinner with him. No one can tell you how long it will be so once a week or more will be a temporary commitment and very possibly his last holidays.

It is very important to give him good mouth care daily with mouth sponges or damp paper towels. The pharmacy also carries mouth swabs with a lemon flavor. I hope and pray the family can grow closer.

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We went through this with my dad. He quit eating and drinking. My brother and sister would stop at local fast food restaurants that he usually loves. They would hold the food to his mouth and feed him. Then they would leave. While at a Hospice meeting with staff from the nursing home, a attending nurse came in and said, I don't know who was feeding him, but he spit it all out. My dad would hold it in his mouth till whoever left and then spit it out.
He died that night. Your father is in the process of dying. There is nothing anyone can do to stop it. He may not even be aware of anyone at this time.
I know this is hard. My prayers go out to you...
We also held this final meeting with the nursing home, and the Hospice nurse, so they could educate my siblings. After the meeting, neither one would listen. My brother a truck driver got in his truck and left for a job across the country. He did not get to say goodbye. I know he regrets it everyday. Do your best and leave the rest to God...

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Food was an issue for our family when MIL was on hospice too. We had a few family members who were well meaning & kept trying to get MIL to eat and we had her boyfriend who was her primary caregiver & he thought she needed to eat so they would all bring her food and give her ensure. Up until her last week alive, she would take a few sips and eat a couple bites to placate them. And the end result was bad stomach discomfort because her body couldn’t digest the food! At one point the hospice nurse said if she didn’t have a bowel movement that they would have to give her an enema and that really really upset her! She didn’t want that at all. I really think when someone goes on hospice that hospice needs to have a meeting with all the immediate family members (or friends, whoever it is that is involved with the family and will be there) to prepare them for what’s to come.

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One of the stages of impending death is the lack of appetite, and no longer wanting to take food or drink. Do force anything on them to eat or drink is more harmful to them at this stage than not eating or drinking. You need to ask the Hospice social worker to meet with family (perhaps you can call a family meeting) and have the social worker and nurse have a calm and frank discussion of the stages of death and what to look for. Unless the patient is in severe pain from an illness, the stages of death are natural and can be a gentle way to leave the earth. Facing death and accepting it are very difficult things to do, and it would be better if everyone understood that death is natural and will happen to everyone. Given the irreversible health issues your father is facing, it seems like nature is taking its course. It's time to let it.

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To so many of us (particularly women, mothers of a certain generation) food is our way of showing love, taking care of our families and the cure all in circumstances beyond our control. We take food to grieving families and we feed our grown kids at every opportunity. Your sister may be focusing on the only thing she feels she can, the only thing she feels comfortable contributing. I’m not saying it makes her approach right or your reaction wrong, just that there may be forces neither of you are really aware of contributing to your individual reactions to the present stressful time. The guilt, right or wrong, misplaced or not that she might be carrying for not being Dads caregiver...

I assume both sisters were on board with the decision to call in Hospice or at least aquested to it if it was your dads and they know what that means, he is dying and resolved to it, Hospice is there to make it as peaceful and comfortable as possible so your sisters focus on getting him to eat is really just grasping at straws, I get the urge to hang on to a passing loved one and I have learned that it’s not until you have lived with a person dying and been their day to day caregiver that you really learn the skill of letting them go of understanding their right to die in the way they choose if at all possible, your sister doesn’t have the benefit of your experience. She also doesn’t have the benefit of your time with Dad any more than the work of taking care of him 24/7, it’s a double edged sword like most things in life, ying yang as they say.

If you can find the patience at this point maybe you can say something like “there are things he will only let me do because I care for him all the time and there are things he just won’t do for me because he is so used to me. Maybe he would be more receptive to your approach or just you bringing him a special treat, you are always welcome to try”.

“I’m not going to make it a huge deal or a stress between us though, I will offer whatever he wants but if he chooses not to eat I have to trust his instinct just as I have to trust his decision to pass the way he is. It’s tough to watch but i also know that often the body tells you what it needs and what it doesn’t we just don’t always listen and when someone’s body is shutting down or fighting pain digestion can cause more pain and discomfort so since we know he is passing anyway I don’t see much point in ignoring his instincts/wishes now.”

Only if you feel the need to address it at all of course or maybe if she pushes it again. The time isn’t far off when you and your sisters are going to need each other even more than you do now (or would be nice to have) and while I’m not in your position I think for me it wouldn’t be worth the negative energy and bad feelings later to make a big deal of all of this even just internally. My thought s are with you.

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Thank you for posting. I learn something from every post and yours is teaching me grace and compassion. My one sister is bringing dad food every day. He doesn’t eat it but it makes her feel like she’s doing something so that’s good. I try to keep things as smooth as possible for everyone involved, but primarily for dad. In the meantime, hospice is sending out some educational material on what to expect in these last days. It will be more effective coming from someone other than me.

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that is easy bro the answer is hemp oil or cbd ...

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Not if he takes xanex or atorvastatin. Be careful. CBD oil acts like grapefruit and impacts the -statin, and it uses the same receptors as xanex, so it cancels out the effect of xanex. This might be ok, but if the tolerance for xanex has gone up, the dose of CBD would have to be higher, I’m assuming. We didn’t try it a second time. Living through the resulting panic attack was enough of a lesson for me.

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I'm sending a second note to you because of some of the more recent messages sent to you advising you to dump your sisters. Another reason is because I have been a similar situation recently.

Go slowly if you're considering removing your sisters from your life. Even though they have treated you so poorly and haven't helped out taking care of their father, their still your family. Think about what life would be without them.

My situation involved my daughter not once visiting her mother knowing my wife was seriously ill. My wife passed and my daughter still refuses to communicate with me. At first I felt much anger, but in spite of what she has or hasn't done, I still love her. She's my daughter, I can't remove her from thoughts. Not forgiving her would probably lead to never ever seeing her again. I chose to hope someday she will come back to me.

Once again, take your time regarding the "get rid of your sisters" advice. It's not bad advice, I'm sure many others would recommend doing the same, BUT, do you really want to lose them forever? If you still love them, then your decision should be easy. I hope you take the same path I took.

God bless. I hope you find much strength to help you get through this awful time.

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Thank you for your heartfelt message. I understand what you’re saying and promise to keep an open mind and heart. There’s a lot of healing that needs to be done but who knows what the future holds. I am working on forgiveness.
I sincerely pray for you and your daughter, for your reconciliation.

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You are and have done the right thing. We also followed MIL life choices. No feeding tube, no ventilator, etc. After her stroke we were informed by her hospice nurse that she could have a feeding tube, that it was an option. I informed her that no, it's not an option that we were honoring her end of life instructions as she wished. Our goal was to let her go on her terms, not ours in the most loving and comfortable way possible. Was it hard? You bet. There comes a time that we have done all we can and need to leave it in the Lord's hands. I fed her baby spoons of food and syringes of water so she wouldn't choke. Our loved ones know when they are ready to go and do so, WE are the ones who are not ready for them to make their final journey. In the end the human side of us grieves and cries as we miss them, but there is the knowledge that they are free of pain and if you are religious, that they are in a much better place waiting for us to join them when our time comes.
Tho your sisters are in denial, their actions will carry over afterwards too. I now get to deal with the I want, give me stage. Stand firm, you will still need to be strong against the next onslaught of selfishness. Hopefully you and your sisters can reconcile when all is said and done. Prayers for you and your family as you make this final journey with your father, it's not easy.

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Takincare,

I am so very sorry for your recent loss and am humbled by your message. It’s good advice because the true ugliness often shows after someone has passed. My prayers for you and your family.

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My sister's told me regularly what I was doing wrong during the four years I cared for her after her stroke. I finally quit giving them updates of her condition.
My mom also quit eating and drinking about 3 weeks before she passed. I offered he food or water, but didn't insist.

As I told my younger sister, if she thought she could do a better job, she could take over full time care. That ended that conversation.

So, my advice is to tell your sister to take over your dad's care. I think you'll find she will reconsider her actions.

Big hugs to you. I know you have been doing your best and I know how hard it is. You are a super star!

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Maple,

Thank you for the encouragement and advice. I am very sorry you had to go through that but appreciate you reaching out to make my journey a little easier. Big hug received and returned!

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Dear Canoe63, I continue to follow all the various suggestions you have received regarding your sisters, mainly how you should deal with them. I hate to be in your shoes. Right now you show so much strength, but I worry not knowing how long you can continue. If I'm understanding your story accurately, your sisters have been given all the information needed on how to care for your dad, which you are doing properly, and yet they continue to find blame towards you. This is not excusable.

In one of your responses you wrote you haven't had time to grieve both your mother's death and your aunt. And now your dealing with your dad. Again I worry that you're going to explode. I cannot imagine how you are dealing with all of this day after day. You truly are someone special.

One question I have is, did you have to take care of your mother and/or aunt without help from your sisters? I fear for your answer.

You don't have a rough road ahead, you're already on it. Somehow, you're continuing to be there for your dad. So much love you must have for him.

Earlier my advice to you was to forgive your sisters because their your family. If you still have love for them, then don't ignore it. My situation with my daughter not being there for her mother, especially when my wife was in her last days, hit me hard. And yet, I still love my daughter and I hope some day she'll return to me. To any of those that disagree I say this, when your love is so great for someone, it surpasses everything else, and it makes it so much easier to forgive.

Once again Canoe63, I have a feel for what you're going through. Days of worry and exhaustion with no relief in sight takes it toll. At the end of the day, ( really there is no end ), you know what's ahead and it's very difficult to go through another day, but somehow you do it, over and over again. Even after I send you this message and turn off my computer, I will still think of you as I have been these past several days. In spite of it's difficulties, please try and take care of yourself, it's a must. Maybe a miracle will happen.

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Helpthyneighbor,

A miracle HAS happened. I’ve found the support, compassion and empathy that I desperately needed. I have you and everyone else here to thank. It has lifted me up and given me hope where I previously thought there was none.

You asked about my sisters’ participation when I cared for my mom and aunt. Not only did they not help, they undermined the process. For example, at one point my mother was hospitalized for a low serum level of sodium. She was doing well and getting ready to discharge when she fell and broke her leg. Didn’t make sense because at that point her sodium levels had returned to normal and she only required stand-by assist. Come to find out, both sisters were sneaking in tranquilizers and sleeping pills to her in the hospital. I won’t bore everyone with the details but they didn’t learn their lesson and continued to do it when my mom was transferred to a rehab facility. It was a big deal and required a lot of intervention as you can imagine. My mother never forgave me for doing what had to be done. Sadly, she never got to return home. The broken leg started a domino effect of medical problems and we bounced between hospitals and NH/rehab. Stroke, heart attack, infection on top of infection, it was beyond awful. As for my aunt, my sisters just didn’t care except to use it as an opportunity to criticize.

I want you to know that I’m okay. At this point, I’ve turned it over to God. I was once reminded that a clear conscience is a soft pillow. And it is. When it’s time to move on with my life, I will do it knowing I did the best I could and under very trying circumstances.

I actually referenced you (indirectly) the other day when someone said they were ending their relationship with a family member. I told them that I learned from a very wise person to keep an open mind and open heart to the notion of future reconciliation. Love should not be so easily disposed. I know I will approach it with a lot of boundaries, but I will not close the door. We grow. We learn.

Thank you for standing beside me in spirit. I continue to pray for you and your daughter.

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It is my opinion the only one that can answer this situation is yourself. If you feel that you have done everything you can, then feel good about yourself and don’t give a second thought to what others think. As a caregiver we have to evaluate ourselves without always worrying about what others think. What do you think about yourself? Have you done everything you can? Have you gone above the “Call of Duty”? If so your an awesome individual and only care about what you think. As for uncontrolled A-fib, they have blood thinners for that such as Pradaxa, warfarin etc...which are all extremely evil drugs, a double edged sword to prolong life and destroy it. Any true caregiver myself included, has issues from these situations, usually people that do not do it have little or no empathy towards our situation, primarily because they haven’t gone through it. Give yourself a pat on the back and move on from the nonsense. Anger And exhaustion is very common and can only be dealt with by self reflection, or running away screaming like a madman lol. Anyways take care hope this helps. Hang in there many of us feel the same way. Remember your the only one that should care about what you think about the situation. I applaud you.. As for food when someone’s at the end of their life ask them what they really want and let them have it, I mean if your dying and want something you shouldn’t be eating what’s the big deal? Hope this helps

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Looking at your profile, you’ve had more than your share of caregiving and medical-related experiences. I hope you’ll continue to learn and grow through your journey, and I thank you for your well-intentioned advice.

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My friend I saw the same things in my Mother near the end and of course there were family and friends with various suggestions, critiques and absurd ideas. Everyone from her Priest to the people at the Grocery Store who knew her had 2 cents to share. They drover me crazy but I realized that they were just showing their concern the only way they knew how. All the hard work and hard choices fell to me. I know how you feel. My suggestion is to just be able to face yourself in the mirror and know you are doing everything to the best of your ability and its ok to get pissed off at your family from time to time. I had to beg my Sister to come visit my Mom in Hospice and when she did I told her, If you have anything to say about my choices you can come and take care of her yourself. She never said another word. What you are doing is a blessing to your Father and in the end you will have the comfort of knowing you were there for him and he knew that. I wish you well.

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Robert,

Thank you for your advice. I’ve received a lot of support and wisdom on this forum. And you’re right...when this is over, I’ll take comfort in knowing I did all I could.

I wish you well in caring for your partner. These are not easy days for any of us so I appreciate it even more that you took the time to reach out.

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Well, your sister is unwilling to accept what is happening.
Ask her, if a person is dying, meaning their organs are starting to shut down why would they want to take a sack lunch with them?

As you can tell, I'm allergic to stupidity and I break out in a rash.

Anyone person who has sat with a family member whilst said family member is beginning their passage to the other side would know what is happening

Does Dad talk with loved ones who have already passed over? Well if he does, those loved ones are there to welcome him as well as his passage.

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Not eating is a good sign that death approaches. You do not want dad to be eating before death. The body is readying itself...listen to the body. It's always the one who sacrificed themselves and took care that is chastised and blamed by those who didn't bother to care enough to have an actual stake in the death process.

It's guilt; this doesn't take a licensed therapist to figure that out. Be by your father and medicate accordingly. As for the hysteria with the family: the more you try to address them, the more they will persist. Have the hospice social worker deal with them and if they can't act civil, bar them from the house.

This is a time of reverence to your father whether he's conscious or not...respect above all for the dignity of his death to honor his time here.

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My father is actively dying but my sister blames me because he no longer wants to eat. Any advice?

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