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.
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.
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.
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 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.
Be at peace. Can you stream her shows on a bedside tablet or computer? Ask Hospice if they can help with this.
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.
As you know Luz passed away on March 21,2019. She was buried on March 30, 2019. Luz is buried in our family cemetery. At least there she is surounded by family and friends. She will not go unnoticed and forgotten.
It was a miserable day. Cold, windy, and raining. The rain let up a little during the grave side services. The rest of the day it was on and off again downpours. Temps were near freezing.
The funeral home services were good. The grave side services were good. Not a whole lot of people but that was expected because of the weather. We were short one pall bearer.
Believe it or not the young man there to set the vault actually came running in to help. He helped my aging , crippled Aunt to her her seat from the car to the seat in his work clothes. then helped with the casket to get it in the correct spot.
It was wet and muddy. I think I have caught a cold.
If Luz talked to Mother Nature, Luz was not happy and let us know it.
As expected, both funeral homes did a very good job preparing her . She looked beautiful and comfortable. They even did her finger nails. I had given them a budget to purchase her clothing. She is wearing a white turtleneck that has a floral pattern on the top part and black slacks. Make up and hair were very good.
I am working on choosing and designing the stone. I will fax that off this week, I hope.
I have started the legal stuff. Banks, SSA, health insurance. life insurance, etc. I want to get this done as soon as possible to do as much as I can to protect her reputation from ID theft It may sound like I may trying to get rid of her but in fact I feel like I am still protecting her from villans. I am trying to prevent some scum that crawls out of the sewers from using her good name for crimes. It is not easy and I have to sit in the parking lot a few minutes afterwards to regain a safe driving condition.
Some people I came into contact with ask about my trip and were embarrassed when I told them the reason for my trip and how it went. Every one wanted to be happy and I could not be happy. Sorry.
It will take weeks to finish what is left to do. But that is part of the job. For me it is keeping her memory alive and safe.
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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