I am in at a difficult time. DW is currently in a hospital and is stable for everything that is going wrong.
I took her in because I could no longer care for her at home. She could not stand or walk. She was eating less and less. She would chew some bites of food for up to 15 or 20 minutes. She is non-verbal though she can follow some directions such as turn over, raise your head.
She was finally found to have a UTI as well as poorly functioning kidneys. All are being treated and she is stable or still improving.
Initially she was in the neuro ward and was stable so they were preparing to discharge her to re-hab when all hell broke loose. A-FIB. Her heart and bp went bonkers. Her face turned bright red and all of the alarms were going off. The PA system started with the announcement "Rapid response team to room XXX." Suddenly people and machines started arriving. About twelve people and various machines including the crash cart crowded into the room with her and me. I got out of their way, sat in a corner while they did their thing, and started to cry. After about 30 to 45 minutes they started to leave. I was informed that DW would be moved to IMC floor.
The staff on IMC is really wonderful. She is receiving very good care but I was told to start looking at hospice. I know she will never fully recover to where she was just last week. She continues to eating problems. She can swallow but most of the time she refuses to swallow. We have had to suck dissolved food stuff from her mouth. She has not had enough food intake to have a bowel movement though she has expelled gas. Urinating is not a problem.
Still on a saline drip to help her kidney function. She was receiving D5W for nutrition. The swallowing thing I feel is dementia related as well as her dislike of taking meds.
Hospice was called and it seemed as though their suggestion was to let her go. I understood them to mean let her starve to death. That seems to me to be cruel. Though I know that is where she is currently heading. I know I need to find out whether I should try to get her into a facility or bring her home from some one.
If she were to come home at least she could watch her Filipino Channel. I think she would like that and it might be easier for her former friends to crawl out of the woodwork to visit her. I doubt that would happen.
I guess, like nearly all of us here I don't like the idea of her passing but I am having guilt thoughts that if I proceed along the recommended lines I am actually killing her or at least assisting in it.
Today she was restless and turned toward me, so I held her and she actually put her mitten covered hands round me. I like to think she was saying she loved me but I don't know if she was trying to say something else.
If she comes home I need to find out if the IV would/should be continued.
No feeding tube is recommended. Fine I understand most of that. She would just try to remove it anyway unless I kept her hands covered.
This is a very difficult decision to make. If you have any comments or suggestions I would appreciate them. This part is going to be a very lonely and difficult time.
Thank you for listening and commenting. gotta go now. This screen getting very blurry.
Going to have a think. Is anyone with you, meanwhile?
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!
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.
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
Be at peace. Can you stream her shows on a bedside tablet or computer? Ask Hospice if they can help with this.
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}
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.
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.
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.
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.
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.
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.
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.
Short answer for a very involved question .
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.
I found this talk helpful about hospice
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.
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.
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.