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.
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.
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.
Keep a lookout in case. There could be a husband or wife three rooms down feeling just as much on his or her own.
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.
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.
Vent, if you want, ask questions. Please lean on your friends here. We've all been there or are there. {hug}
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.
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.
Best of luck to you with whatever you decide.
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.
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.
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.
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.
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!
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??)
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
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.
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.
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 found this talk helpful about hospice