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Old Sailor, I have no better advice to give than what you have received on these pages from the fine people here. I do want you to know, however, that you and your wife are in my prayers. Hospice can be a great blessing. My dad passed while in hospice and the staff bent over backwards to do every kind thing they could for him. My stepmother said he was at peace and very comfortable. I couldn't wish more for him than that. I got the chance to say goodbye while he was still fairly lucid and able to respond. It meant a lot to both of us since my mother had kept us apart most of my life. I know I will see him again someday and we will be together. I believe the same will happen for you and your dear wife. You have shown her such love and strength in telling her it's okay to go. When she leaves this world to go on to a new journey, I think her spirit will be giving you the same love and strength to continue on. God Bless.
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Old Sailor (((((((((hugs))))))))) to you and Luz.

When my mom was on hospice, my SIL and I were able to use our phones to connect to WIFI and get songs from the 1940s, Opera and musicals like South Pacific. Do you have a phone you can use for this? Or perhaps there is a cable music channel with the songs you are seeking?

Perhaps one of the hospice personnel could help with this.
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Yes CM I do go outside to clear my head and try to work out the next step. As to music, the cable company provides this and I have found very little that we would like. The easy listening is about the best but when cable calls music from the 80's & 90' as classical I change the channel.
Neither of us have any relatives in the state. Really no one to talk to. Just the great folks on here. Book learned professionals have very little ideas as to what we are going through. some of their ideas are of no help. We are all different have different responses to our unique situation. Although their suggestions can open doors for us to think about.
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Countrymouse Mar 2019
Ugh! I feel much the same about what Amazon calls 'a classic' when it comes to books. I won't name names - I'd be bound to insult somebody's all-time favourite :/

Keep a lookout in case. There could be a husband or wife three rooms down feeling just as much on his or her own.
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OldSailor it is not only no fun sitting with a sleeping person for hours on end, it is also terrible for your physical and mental wellbeing.

Are you getting up and stretching, or preferably going outside for a few minutes' fresh air, regularly? Do you have any music in the room - if you (both) like it - or something to read? Are there perhaps other relatives in the common areas you can talk to over a quick coffee?

I know it's all obvious and you'll already have thought of it, I just don't want you to lose all track of your own needs while you watch over Luz.
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Agree that it seems you are making many good decisions OldSailor. Thanks for keeping us posted. I am glad you are getting some rest and also that you have plans underway for a ME day. Another smart decision.
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Old Sailor ; Please understand you should never ever feel guilty about letting Hospice come in to make your loved one comfortable ...Hospice does not make them starve to death although it may seem that way ....if shes not eating its because the desire to eat fades probly because the food just seems to pile up inside and it makes them very uncomfortable and the natural instinct to chew & swallow fades away. YOU ARE NOT KILLING anyone to let Nature take its course its hard to deal with, but death is part of life, and actually sometimes death can be kind ,you have done all you can to make your loved one comfortable Now maybe its time to accept this is out of your hands ...Prayers to you !
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OldSailor Mar 2019
Lorraine, she is not eating or drinking because she is sedated 24/7. The only way I can get water into her is with a sponge oral scrubber. She cannot drink thru a straw like this. And she only take the sponge two or three times maybe twice a day. She comes around about twice a day.
She is medicated because she was reportedly trying to get up the first night. She still tries to sit up and has set off the escape alarm several times.
It is no fun sitting with a sleeping person 10 to 14 hours a day. But I feel I must.
The staff drops in to see if she is asleep and breathing or to give meds. She is bathed daily to ward off odor and infections. That is about the only time she is allowed to be awake. And the longest time anyone, other than myself, spends with her.
Thank you for your comments. They are really appreciated.
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Old Sailor, the words you said to Luz were the right words. Giving her permission and assurance was perfect. I’m so sorry you are facing this and wish you peace. You have done the right thing by her. Hugs and prayers for you.
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Yes, thank you the update, OldSailor. We're thinking of you and Luz.

Vent, if you want, ask questions. Please lean on your friends here. We've all been there or are there. {hug}
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Thank you for the update, oldsailor, It is the best and right thing to do but not the easiest thing to do. You are planning thins so very well. Please pat yourself on the back. Yes, get rest and eat properly and give yourself some breaks, (((((hugs)))))) and prayers. This is a tough time. Luz is so fortunate to have you looking after her, I know there is great love between the two of you.
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Luz entered hospice today. I know it is the best and right thing to do. Still I get funny feelings. I hope I understood everything. She has been mildly sedated to help her with anxiety. She would not eat very much before going but for the last two days she ate everything edible. Now is constipated again. Lord have mercy when it breaks.
I am calm and relaxed even though I still have those feeling like I should be doing more.
This empty house has become my transition. I must grow accustom to being alone.
I was thinking this morning how much like my Dad I have become. He went through a similar situation with Mother. And believe it or not it was in the same month of the year19 years ago in April I lost Daddy. 24 years ago in the month of April I lost Mother. Now Luz is so close it could happen to me again.

I am getting some rest before I have to deal with everything to come. I know I wil need the physical and mental strength. Like dealing with the idiots filing insurance claims. I am not eating much yet but that will change soon.
I am planning to take a ME day in just a few weeks. I hope it clears my head some.
I plan to meet with the social worker Monday to help plan, in my mind, the final arrangements. which reminds me, I need to get out more hankies.

It was not an easy decision but I think it is the best one for both of us.

I thank everyone on here for the thoughts, advise, expressions, and prayers.

By the way, yesterday was a busy day. I had three different religious folks stop by Luz's room and offer prayers, including a Catholic priest.
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I see that you have made the decision, but want to share my hospice experience with you.
I am so sorry you are going through this. We had to make the decision and I know it isn't easy. My grandmother who I loved dearly (I lived with her as a kid) had a stroke. Things seemed at first like they could be improved, but similar to your situation, things very suddenly took a turn. She was unable to swallow and would require a feeding tube. While she wasn't able to effectively communicate, I knew and felt it deeply that she would not want the feeding tube. Hospice care was not at all like letting her starve. Part of the care was keeping her comfortable, so she did not feel any pain. I was able to be with her and know that there were medical professionals to keep her comfortable. While she wasn't at home, family was able to be with her and it was peaceful. It was very difficult, but I know in my heart that the decision was the right one for us.
I will keep you both in my thoughts and know that she feels your love. Please reach out here or somewhere else for emotional support for yourself. You are very kind and you aren't alone.
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Old Sailor, I'm sorry that you are going through this with your DW and I hope you are not going through it alone. It sounds like it is her time to go, as we will all go sooner or later. It sounds like she is not taking in any nutrition, which is common at this point, but I also suggest that you consider to stop the hydration as well. Keeping the hydration while stopping the nutrition will prolong her death, maybe weeks. Stopping both the nutrition and the hydration she will go sooner with less suffering for both her and you. It's definitely something to consider. My thoughts are with you
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Maryjann Mar 2019
Maybe ask the doctor which will cause less suffering. A dear friend passed after he stopped eating and drinking. He was in pain and the doctor said that he was cramping because of dehydration. Perhaps, while the IV would prolong the end, she would be in less discomfort. Our friend, who finally did agree to go to the hospital, was very uncomfortable because of the dehydration.
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AND (allow natural death) is not assisting her to die, nor killing her. 3 of my LO actually got better, initially, when put on hospice. They got the comfort to be able to sleep through the night, they had better control of their symptoms, so therefore were performing better health selfcare. My father said he felt better for the first time in 10 years after being admitted to hospice care. It is hard to let them go. You took good care of her. I wish you the best.
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Hospice normally provides a nurse, a social worker, ministerial assistance and staff to help with bathing. You can talk with any or all of them to help get some guidance. You may also have your own minister to talk with. It is most important that you take care of yourself first before you can take care of anyone else. If bringing your parent home makes you the most comfortable , than the hospice staff can help you with that. It sounds like minimal care would be needed -just enough for comfort. If your parent is in much pain than a peaceful end may be best. Is there a living will? Who has the authority to make those decisions.
Best of luck to you with whatever you decide.
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OldSailor: Did they mention Palliative Care? What did the Hospitalist tell you? Dear man, this is such a hard decision and remember that God is with you always. My late mother had lost the ability to swallow. Please come on here for comfort.
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My heart goes out to you both; this is one of the most difficult decisions to make.
I was in a similar place a couple of years ago with my mother. She fell ill suddenly, then had an AFib problem and was resuscitated. But, she lost the use of one arm, and her legs. Fast forward two months--she was unable to get out of bed, had heart problems, and kidney failure. I wanted home health care, my father chose Hospice.
You are correct, they do not come over to the house often, but they will come if you need them. Basically, they explained what to expect, and they gave us medications to keep her comfortable.
The signs you shared seem to point to it being her time to go. It is so hard to say goodbye, I know. But, I know my mom wanted to be at home--I think Luz would like to be home too.
My love to you both.
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The thing to consider is 'what is her quality of life'?
She's not eating anyway. They can continue to give her fluids and that's it.
I'm surprised by the emergency response. There's no DNR? It sounds like she is suffering and it is time to let go.
Yes it is very difficult.
If you need help you could talk with your pastor, or there might be a social worker who can help you to vent, but it will still be your and your family's decision.
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I'm sorry for your situation. Many of us here have faced the agony of trying to sort out our feelings about how to proceed in the face of these circumstances. Unfortunately, DW has already begun the dying process and you aren't going to find the result that offers hope for improvement. She needs bedside care that Hospice can provide and coordinate in any care setting. It will be easier for you and her if it is in an environment where her needs can be met 24/7. That usually isn't with us unless you have lots of people around to help.

Hospice will NOT initiate a lethal dose of Morphine. They will offer drugs to control her symptoms of discomfort, constipation, nausea that may result from constipation, congestion, agitation, and possibly try a milkshake diet. Her drugs may include the lowest dose of Morphine to bring about comfort. As her condition worsens, she may require stronger doses to treat her symptoms. It's true that as her decline continues her drugs may become more sedating until she hopefully passes without too much awareness or struggle. Will it happen quickly? It's more a function of the process of the shutdown of her body she's already begun. Without the ability to take sustenance she will experience multi-system failure that will result in her death regardless of whether she is relieved of her symptoms by Hospice. It would be kinder to provide the ease that is available. My father was unable to eat for four to six weeks before passing. When they can't swallow fluids the timeline is usually less than two weeks.

Sending blessings for your strength.
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Reading below it looks like you have your answer. ((((((hugs)))). No part of this is easy. You and Luz have been very fortunate to have each other for 52 years. Prayers that you find the right place and for the transition to go smoothly.
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If the time is short and you feel you want to bring her home then Hospice should work with you to have that happen. It will be a lot of work for you and are you ready for the memory of her passing at home? Make sure you have support for yourself in place. Spend as much time as you can with her and let the rest go. Had I known my mother only had a few days left I would have brought her home and found a way to make it work instead of having her in a Nursing Home.
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My heart goes out to you and your sweet Luz. What a great man you are. It sounds like her mind and body are ready to go. Being left behind is so hard. I am so happy you can ease her mind by telling her it is ok for her to go. ((Hugs))
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I am so so sorry. I had to make a decision for my mom, 94 years old with dementia and internal intestinal bleeding. She had a DNR but I thought in my mind, “ What if she got better”? Then a nurse asked me this....
What would your mom, at 65 years old, want looking at herself now in this condition? That did it for me. I placed her on hospice and and was so happy I did. She was cared for and received services I never knew existed. Her final days were filled with comfort, peace, and love.
No family member wants to make this decision but placing a loved one on hospice isn’t always the end. It is getting your loved one more personalized care, palliative care, and if they are better in 6 months they are taken off hospice. They can be placed on again. Hospice is not necessarily the end. It’s also to allow the patient more care services either in home or in a care facility. Just make sure you ask around and check reviews for a good agency.
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There have been lots of references to a DNR. Maybe (I hope) our experience was a fluke, but I offer it as an extra thing to pay attention to.

My Mom had had a DNR for months before her death, while she was living at home with my husband and me. When the ambulance had to come and take her to the hospital for an advanced and complex UTI, I decided that offering antibiotics was still the responsible thing to do, as she was reasonably lucid.

She went directly to a nursing care facility from the hospital. It disappointed in several ways, but the worst was this: Mom had an episode of mild rectal bleeding. (My sister was staying with her instead of me for a few days and felt she had to face this decision on her own.). The facility’s night nurse saw that the DNR was an “out of hospital” DNR and sent Mom for another highly unpleasant hospital stay although it was very clear from everything in her file, including a detailed Advance Directive, that when it was her time, she was ready. After 2-3 days in the hospital with no recurrence of the rectal bleeding, she want back to the facility and went on hospice because by this time she could not swallow anything, nor could she walk or stand. She had become nonverbal, although her face and eyes remained quite expressive — of her love, but also of her fear and pain.

I confronted the staff about not honoring the DNR and Advance Directive, and they claimed their hands were tied. If we didn’t have the “right” DNR filled out, that was our tough luck (even though I didn’t define the facility as a “hospital”, the nurse acted out of self-protection and against the direction of myself and my sister rather than honoring my Mom’s intent.

My Mom had lived 99 years without being in a hospital as a patient (even though she had nursed for decades). Both visits were nightmares for her and for us.

I will never know what we could have done to turn the tide, and hopefully at some point the guilt will morph into acceptance of my imperfections as a human. But the point here is this: Don’t expect anyone to honor your loved one’s intentions, even if they are clearly written out — if there is any chance their bureaucracy is going to create a backlash, they will cover their own butts rather than honoring a dying woman’s wishes, which I find utterly despicable. This is a conversation we thought we had had with clarity before we checked Mom into the nursing facility, then they spring this on us in the final days of my Mom’s life. Heart-wrenching, disappointing, infuriating.

Be SURE you have ALL the right versions of a DNR on file. Don’t know who thought there should be several of them or who decided an Advance Directive would not override a clerical error, but our experience was that in a choice between compassion and bureaucracy, we are the only ones who are totally motivated by compassion and we needed to be stronger advocates than we ended up being. After 10 years of loving, at-home caregiving, we were unable to keep caring for her at home, after her first hospital stay. From then on, the nursing facility, while talking a good game, still managed to add misery and subtract dignity from my Mom’s final days. And worse still, they didn’t learn a thing from it, as they insisted it was us who neglected to have the right paperwork. Yuck, yuck, yuck!
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cwillie Mar 2019
I'm sorry things didn't work out the way you expected. From your description I don't think the DNR would have even come into play - it literally stands for Do Not Resuscitate when someone's heart has stopped beating. There are however several other items on an advanced directive that may have come into play depending on how detailed the document was, but it is common to need to make your wishes known at each facility and is usually part of the admissions paperwork.
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Not eating is the natural way for the body to shut down. You aren't killing her; she's trying to die.

My dad didn't eat for about three weeks before he died because he just couldn't get food past his mouth. He could swallow fine, but he couldn't get past the problem with textures. Then the smell of food turned him off, so I didn't cook anything for the last week of his life. It was the natural progression of death.

If you don't feel you're getting the right support from hospice, fire them and hire another one. I did, and the difference was night and day. Yelp is a great source for hospice reviews in your area (Who knew??)
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My sister was a Hospice director she would say you are not prolonging her life, you are prolonging her death.
Would your mother want to live like this?
Are you doing this for yourself or for your mother?
Sonetime the kindness thing to do is to say good by it sounds like your mom is ready to go. Contact Hospice and a grief support group
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My heart goes out to you, OldSailor. Is the hospice option at the facility? In most cases the “letting go” option is done with a steady morphine drip, so that the patient feels no pain. Hospice is different from hospital care - it is only focused on the end of life (which must happen to us all) with the most dignity and gentle care possible. A good hospice will also provide you with support and counseling for her transition. It sounds like DW’s body needs far more attention than you can give to keep her safe and comfortable. You aren’t killing her, she is dying. With all the heartbreak you must be feeling - how can you make this a easy and safe for her as possible?
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Such a rought time and it doesn't sound like hospice is being too supportive or educational, or maybe they are going slow. If you are able to be with your mom, you sort of answered your question. If you are able to take care of her without nursing support, you could bring her home so she could pass in the comforts of that with her favorite TV channel.
Wanting people to eat is a very normal and nurturing thing, but it sometimes can be a painless way for someone to let go. At least from what I was taught/explained. It's just hard for the rest of us to standby and know what is happening.
You can get another hospice service; there is also a group called Curadux which has has access to other experts that can understand all the medical issuesif you want more input from the medical perspective...there is a fee, and I don't know how it all works with insurance etc. Thinking of you and hoping it all works out well for you both.
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The last month or so, my DH wasn't hungry. He would say, fix me something and I'll try to eat. I knew what that meant and I'd ask if he was hungry, he never was - his body was shutting down.

It's not exactly allowing someone to starve to death - it's more a case of allowing them to pass reasonably easily. I still fixed his Nutrition Shake but even that lost it's taste to him. So I stopped forcing it. Do I have regrets? Yes, of course I will always worry was there anything else I could have done. But his time had come - his first wife (deceased) came for him the day he became bedridden and his oldest brother (deceased) came the next day. I know, because he spoke to them. The following day he went into the coma before death and the next he passed peacefully.

When they reach a certain stage, even trying to eliminate becomes almost impossible - it's just another reason they quit wanting to eat.

My heart goes out to you - it's not easy being the one left behind.
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Thank all of you for your opinions and your experiences. I am thinking that a hospice house would in fact be the best. I have heard that 24 hour care is not available at home and that is what she needs. I don't like it but I will respect it.
Yesterday I was able to get her to drink two little cups of juice, two dixies cups of icecream and a few bites of mashed (putrified) (yes, that is right) potatoes. They did taste horrible. I found that if I left a drop or two on her lips she would swallow after licking her lips.
Her facial expressions never or seldom change. Just a wrinkled brow at the most.
I told her if Jesus is waiting for her it was okay to go with him. That is would miss her and always love her but that I would be fine. I mentioned that her parents and sister would be waiting for her to guide her around.
I will tell her again today. I get choked up trying to talk most of the time but somehow I will get the message to her.
I just want to tour one of these places before I commit. The doctors are all onboard with hospice and I was not against it. Just seeking opinions and advise.
What is left of me after this is over does not matter all of that much. Some how I will survive. I will adjust and accomplish what must be done afterwards.
The arrangements will be a little complicated but I know what must be done. I will need extra hankies. But so what.
The house is big and quiet now and the silence is strange.
Sorry I must go. It is nearly 7 o'clock and tie to go to her.
Her name is LUZ. She is Filipino and 75 years old. April will mark our 52nd wedding anniversary.
More later. Thanks again.
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BarbBrooklyn Mar 2019
((((((hugs))))) to you, dear man! I am holding you and Luz in my heart.
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https://www.youtube.com/watch?v=apbSsILLh28
I found this talk helpful about hospice
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