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Please take her home to pass if you can. I could not do that for my dad, he passed in the hospital Monday night. Does she have a DNR? Are you her proxy? Are her wishes written? She seems to be showing the signs of active dying. My heart is with you, this is the hardest thing we go through in life.
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shad250 Mar 2019
I'm so sorry for the loss of your dad.
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Dear brother "oldsailor",

It sounds like she is preparing to go. HER BODY is making all the decisions. You are not "killing her" or "assisting in it". This is what happens when we are closer to death...this is natural and normal, and a little different for everyone.

Hospice doesn't starve anyone! At least not in my state. My dad's been on since October for his unexplained episodes.

However, if she's not eating well, they are trying to avoid any pain for her, which is understandable.

Talk to their social worker, and ask all the questions you need to. They can help you make a decision...this is what they do. Help our loved ones transition...

You have a done an amazing job caring...so receive some guidance and help.

It's going to be ok...much love to your heart.
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I just went through this with my mom. Same thing, she collapsed and could not stand or walk, so took her to ER. A similar chain of events transpired. Hospice came and took over. They told me the body starts shutting down and food is no longer needed. My mom refused to eat. She could barely swallow, and gagged and choked just trying to take her medications. Hospice gave her the pain medication she needed, and my mom passed peacefully in her sleep. She was in Hospice for a week. This was literally the most gut wrenching process I have ever been through, and Im still raw. I know the questions you are asking yourself, and the what ifs. But I sat with my mom and held her hand and knew in my heart she was ready to go. We had had conversations previously, and she didn't want to live a life in pain, hooked up to tubes and ivs. Hospice will be there for you as well. {{{Hugs}}}
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shad250 Mar 2019
I'm so sorry for your loss
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She doesn't want to eat, I would hate to eat and then keep choking. What would you want for yourself? A hospice is not a terrible place we all imagine, its a kind and nurturing place. They will look after you as well. I am sure they will put on some fav tv for her and comfort her. They are trained and know how to deal with anxiety etc. Look at reviews from others who have used the same place, I am sure you will find positive and loving reviews. I know we are saying this from somewhere detached from your situation and not feeling your emotions but what has she got left. You can still be there for her and look after her. You never know she might improve if she is supported. I wish you love in your journey, one that we all have to take xx
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Wonderful thoughts and words here. Take advantage of hospice...let them take over in assisting her to transition. Also they are there for you. They will help you understand the dying process and what’s normal. They should have a hospice chaplain experienced in grief counseling. Use all of this. No guilt as you are a witness to what is truly a part of the process of being human. I know you will miss her but you are not killing your wife. Sending hugs!
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Hospice advocates for a natural death, not an extended death.

Short answer for a very involved question .
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My mother was totally against going to hospice too, and wanted to keep my father home...I was the opposite...I was tired of him suffering, and he WAS...he was miserable...if she is miserable, let hospice help! My mother wanted him to die home but he was so uncomfortable it was just too sad to watch. He couldn't stand up, walk, eat or talk, with hospice's help, he was comfortable...very comfortable...and died very very peacefully in his sleep....the best way to go...
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OldSailor, I have admired your patience and selflessness in providing care for your wife. I’ve read plenty of your responses to questions from others where you always offer sound advice.

You have honored and taken care of your wife very well. Now it may be time for her to meet her God. It sounds as if she is ready but you are not.

I hope you opt for hospice care at a hospice center. You can still be with her to support her on this final journey home.

You are simply letting nature take its course. Your wife is tired, sick and her quality of life is limited.

Allow her to go. Let her know you love her and that it’s ok to leave you.

I assume you’ve made her a DNR (do not resuscitate) to assure the hospital staff does not perform CPR as the compressions can be painful. If not please consider changing her status to a DNR.

While it is so hard to do, let her go peacefully via hospice at a hospice center. Both of you will receive support there.

I am so very sorry for you. I hope you find comfort and peace.
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mmcmahon12000 Mar 2019
If she has dementia, a hospice center might confuse her even more than she already is. A friend of ours lost her grandpa recently but he had hospice care at his home. It was a good experience for the family, as well as him, and he died peacefully after that.
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You can always advocate for your DW even as DNR and/or hospice care is put in place. I'm sorry. I understand about your wife not swallowing. That's how my grandmother got. I wanted her to eat but she didn't want food anymore. You can give her ice chips, from what I've read. You're doing a great job. Is there someone you can talk to, a pastor or friend? Just someone to shoulder some of this burden with you. 💙
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OldSailor, I am so sorry and know that you will make the decision that is best for her and you. Hospice house is my personal thought so you have the support you will need and she the care she will need. There are many excellent answers here and I cannot add to that. Take care of you and try to rest. Thinking of you both, and know that you have provided her excellent care from the love you have for her. Not many can do what you have. And your wife knows the kindness, love and compassion that you have for her comes from your heart.
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God bless you and your dear wife at this difficult time, my brother. May the Lord grant her a peaceful, painless passing, and be a very present comfort to you is my prayer for you. (((Hugs)))
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I’m so sorry, old sailor. I don’t think any of us can truly prepare for death. Impossible to imagine what you are going through. It’s so clear that you love your wife. She loves you. I have no doubt about that. You sound like a lovely husband.

I wish I had an answer to help you. You and your wife have my prayers. God bless you and please let us know how you are doing.
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I have read some of your posts and responses. You both have had a long haul.
I would do a DNR or POLST.

To have CPR done is painful. the chance of broken ribs, broken sternum is high and recovery from broken ribs is difficult and often pneumonia will set in because breathing is compromised.
Feeding tubes are fine to a point but once the body does not need food providing nutrition can cause more problems. Same with IV's for fluids.

Contact Hospice. the care, compassion, support that I got..we got was amazing.

You have done your best.
All that is left now is to tell her that you love her, you will miss her, you will be alright and give her permission to go. She just might be waiting to hear you say that.
((Hugs)) and God bless.
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NeedHelpWithMom Mar 2019
Lovely answer, grandma.
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Old Sailor
Hugs for you and your dear wife. By now your decision has been made. It was the right one. I just wanted to add my support and for you to know that we are all holding vigil with you.
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Rafaela Mar 2019
I want to do the same and want you to know you’re not alone in this painful journey. I will be where you are with my husband soon. I do know that he does not want to lie in bed suffering, so my decision will be not to prolong his life but provide comfort and love in the meantime and morphine when the time comes. I’ve found that I fear his suffering more than his death. He is 68. Sending best wishes and a ((Hug)) your way.
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You are a husband that every woman prays she will have when she chooses her life partner. One thing I know for certain from following your threads and advice to others, you will do nor allow anything harmful to be done to your wife.

You have a good solid, sound mind and I know right now you feel out of control and are questioning everything, that is completely normal, but your steadiness will prevail and you will make the right decisions.

Could it be that the hug was her way of saying thank you and goodbye? That was what struck me 1st off, she had a moment of clarity before she left and felt the need to thank you for all you have been to her these many years.

God give you comfort and peace for this journey and grant you grieving mercies. You are truly a man among us. Hugs and strength to you and your family.
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OldSailor,

I have tears for you as well. And so many prayers. I have experience with this with my mother, but even though she was young and it was so unexpected, it is nothing like having to do this with a spouse. I am so, so sorry.

I would echo what everyone has already worded so well as far as why this is in no way killing her. Her broken body, the disease state is doing this, not you. I won’t add to the wise words you have already been given.

As far as bringing her home, I can tell you what I think I would lean toward if in your shoes. And give you what this might look like in reality, recognizing of course, that every experience is unique.

I would say move her to a good hospice facility if you have one in your area. (Medicare does cover if the dr signs off on it, I believe. And I can’t imagine they wouldn’t as the hospital has already recommended.) Let their Social worker help you find a facility and arrange med-transport. If she is where it sounds like she is, they will work quite quickly.

The transport team will take her, and you can follow in your car. The hospice facility will have been alerted that she is coming and everything will be ready for her. They will get her tucked in and comfy... hospice facilities are more like home and don’t have the monitors, noise, bustle, etc that a hospital does. Quieter and more peaceful. The staff has been trained and will help you as much or as little as you need, but they will be very committed to her comfort.

Home sounds nice in some ways, and some people do just fine with it. However, after watching this play out in reality over a week plus with my mom, I would not have wanted my DH at home. And he is my very best friend in the world. And our home is our nest.

A few reasons stand out...

The body in a diseased state often does not go peacefully. Not like someone drifting out from old age. My mother fevered, tried to take her clothes off, and the last 24 hours with the rattle and the incredibly fast and labored breathing is disturbing. The rattle comes because of mucus discharge and it comes out the mouth, nose, etc. It isn’t pretty, and I don’t mean to draw a horrible picture for you. No one ever gives these details and they are the kinds of things that one needs to know if they are considering bringing home a loved one. The staff stayed on top of it, so it was never overwhelming, but I would not have wanted to be dealing with that in my home, alone, or even with a caregiver/family member helping.

Changing the bed, giving sponge baths, moving them to different positions, being right on top of med management to relieve any suffering... these are the physically demanding things and things they have knowledge and experience with that were invaluable. I was able to just be present with her.

The staff continuously monitors all of these things. I was able to just be near, talking, praying, reading... most of the time I just sat and held her hand and stared out the window. It was sad and being present was my only goal.

When she had passed on, the staff dealt with everything, including calling the funeral home (I had prearranged everything.) I had to call a few family members, but after that, I was able to just go. It is so hard to know what you will need at that point... having the logistics taken care of by someone else alleviates the stress on you.

We had some visitors, not tons. People are uncomfortable with this stuff, it is unfamiliar. But the hospice facility made visiting easy. I wouldn’t make a decision based on visitors. This is about you and about her. Others will make do.

You can be looking at days of this or up to a month. And you will have a lot to do in the aftermath... funeral, paperwork, belongings... in addition to grieving.

Whatever you do, it will be right... because you will be walking her home. I will be praying for you and for your dear wife.
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NeedHelpWithMom Mar 2019
I love this answer. Good advice. Really points out important issues.
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Oldsailor, I am so sorry! I’ve followed your posts & have always admired your courage & strength. You’ve received excellent responses already. I didn’t see this mentioned with regards to letting her starve to death—in addition to what the others have said about that, if her body is indeed shutting down, if she letting go, she isn’t suffering because she’s hungry. She’s not hungry at all. If you feed her and her body cannot digest food anymore, you are actually causing her pain & discomfort. Our family learned this the hard way with my late MIL and she did end up constipated and quite uncomfortable. There is a booklet that hospice provides called “gone before my sight”. I highly recommend it. Aside from gicingb a general timeline of what to expect in the final months, weeks and days, it talks about what the body is going through and what it needs. My heart goes out to you.
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Sorry, didn't read the answers so sorry if I am repeating.

You do know that your wife is a lucky woman and I guess since you have been so involved in her care she feels the same. You couldn't have loved her more.

As I am saying this, I have tears in my eyes. Do you think that hug may have been her way of her saying to let her go. The body shuts down. Even if she was given food, the body will no longer use it. Not being able to swallow is the first thing to go. I think her time has come and the most loving thing you can do is let her go. Hospice will keep her comfortable and pain free.
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Oh, OldSailor, I am so sorry. Others upthread have given you wonderful advice. You wrote your wife is refusing to swallow. I agree with others that she is choosing her direction.

You can only support her and ensure she's comfortable now. Tell her whatever is in your heart. Tell her a favorite story. Pray aloud her favorite prayer if she is religious. Sit there quietly with her as you are can be the best thing for both of you.

If the bed is big enough for you to snuggle up with her, perhaps give both of you this comfort and slip in beside her? {a gentle hug through cyber space}
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No useful advice except to remind you that Hospice is letting nature take its course, not killing someone. You've simply stopped trying to fix what is unfixable for your dear wife.

Be at peace. Can you stream her shows on a bedside tablet or computer? Ask Hospice if they can help with this.
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I am sorry that you have to make this difficult decision and my heart just goes out to you.

I a sure you that your wife is not feeling any hunger pains. You do not have a hand in killing her. Her body is going through a natural process and sometimes it is better to let nature take its course. This is easier said than done.

I am sure you being by her side is a great comfort to her. I believe you will come to realize just what you should do as far as if she should go to a facility or home.

Again I am sorry that you are going through this very difficult time.

Hugs
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OldSailor I have followed your posts and my heart is with you right now. You aren't alone. We are all here and will continue to be in the days ahead. The love you and your dear wife have rings through clearly. It is also clear that she knows you are with her and it is giving her comfort. I believe more than anything that is what she wants and needs most. Good job.
I am glad you are comfortable with the medical staff. That allows you to trust their opinions and assessment which is a huge benefit. I think her refusal to swallow, even though she can, is a very big sign. I do not believe for one moment if you proceed as recommended that you are having a hand in bringing things to an end. I do believe things are already moving toward a natural process - none of which is of your doing. I also agree with what was posted about the body becoming unable to process food/nutrition at some point, but the medical experts can probably confirm that for you.
If you want to bring her home, I assume you will need a team of people to help with her care. If you can arrange such care (whether from a visiting nurse, hospice, or others) then do so. It does sound like she would have the benefit of the Filipino channel which she cannot get elsewhere. I assume you will get more advice on the pros/cons from the medical staff. Whatever you decide is OK. I am hoping for clarity and peace for you. Please keep us posted as you are able. We are here for you.
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I don't like saying 'she' and 'her' the whole time. This is an individual lady with a name, someone who is so dear to you and has merited the love of such a sterling man. Please use her name for me in your head.

On the are you killing her or assisting with killing her question. Short of being able to look physically inside her brain at the very most recent changes, I think you must know rationally that it is her brain and her body that have made the decision. They are, she is, letting go. If you intervene, you are trying to stop the process her body itself has begun.

On the cruelty of removing IV feeding; your feeling that it is tantamount to starving her. We imagine that with horror because we imagine the sensation of hunger. But hunger is not something she experiences now; perhaps she hasn't for quite a long time? Her body has withdrawn the desire for food; she has no appetite; she barely shows the most basic, reflex ability to take in food. I believe, but check with your hospice advisers, that the nutrition she's receiving at the moment will soon do nothing: her body will simply be unable to process it.

Remember that you do have a safety net: you will be observing her, your hospice team will give you swabs to keep her mouth clean and comfortable; if she does show signs of thirst or any other discomfort, you and they will respond appropriately. God knows it will be hard enough, but you are not going to be cornered into allowing your wife to be tormented.

Your presence is the only thing that is really important. You've seen that, just now. It reassures and comforts her. Maintain that contact in whichever setting best supports it: at home only if you can be certain you will have enough help, but if you can be sure of it then by all means at home.

It'll be a new day soon and everyone will be along to send you their best thoughts. Courage, mon brave!
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I'm so sorry OldSailor. I don't think that choosing hospice means "letting her starve to death", at least not in a way any different than is already happening... she will be offered food, she will be unable or refuse to swallow. What it does mean is that she won't be offered feeding tubes or I.V.'s and nobody will sit beside her for hours on end attempting to get her to swallow one more bite. Everything I've read and seen tells me she truly isn't hungry, but you can offer her very soft foods that dissolve in her mouth and don't need to be chewed: ice creams, pudding and yogurt, or flavourful savoury pureed sups. She may enjoy them, she may spit them out, or she may refuse to open her mouth altogether - it will be her choice, one of the few things she is still able to control.
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It's also just struck me - for you it is four in the morning. Shouldn't you at least try to get some sleep? Hope you've gone to bed.
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You dear, dear man. I am so sorry for what you're going through.

Going to have a think. Is anyone with you, meanwhile?
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