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My mil (86) is in nursing care since April and not doing well. She went from independent living in Nov of last year to two hospital stays and a rapid decline. Her last hospitalization in Feb she was rushed to ER as they thought she was having a stroke. We were with her and fully expected her to pass that night she was in such bad shape. She didn't and they discovered the next day she was actually having multiple seizures. We suspect she'd been having them frequently.


She is now bed bound, fully incontinent (has been since December). She is on about 8 medications, including three to prevent the seizures (others are for high blood pressure and other issues). She was recently evaluated for dementia as she has many signs including hallucinations and they suspect several forms. She is losing the ability to speak.


Today my husband went to visit her and said she said hello to him, but she was doing very poorly. They are now assessing her for a UTI and will treat with antibiotics. This is the 4th UTI she has had in as many months. In fact, she's had several infections.


My MIL is in a very good facility and self paying. One of the staff called my husband after the psych eval and he told her that he knew his mom would not improve and he did not want to try to fix anything else with more meds, but now he seems to think they'll treat the UTI and she will improve. Perhaps she will, but for what? To lie in a bed? The only thing keeping her alive is all of the medications.


At what point should hospice be considered? We have been through 10 years of watching slow declines in parents. My mother ended up on hospice with lewy-body and lasted 7 months in nursing, but she had no other problems and no medications - she also never wanted to end up in nursing (my grandmother lasted 7 years in nursing with dementia) - she wanted an assisted death - so I had some peace when she did go. My fil was sick for years on numerous medications and lingered in the hospital for five months. My husband was diagnosed a year ago at 59 with a rare illness for which he is getting treatment and this is taking a toll.


If it were my mom I would switch her to hospice now. I'm a bit surprised my husband wants to give his mother more medication given her state. I feel he is now in denial about next steps. To say I am weary that this has taken over our lives so fully is an understatement. The moving and care of my mil (she neglected many, many things business-wise we have also had to deal with) has been three very long years, following the seven with my mother and fil.


It is my husband's decision what happens next, but I find myself very angry that this is continuing. I know it is out of my hands on a spiritual level, but how can someone so ill keep holding on?

Thank you so much for everyone's help. It was truly invaluable. My husband is contacting Hospice. They are treating my mil for the uti infection, but he said today that she is clearly declining even more. May she have comfort and peace.
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busymom Jun 17, 2019
I pray that you and your husband will have comfort and peace. These are difficult decisions, but I have used hospice for both of my parents and am now being blessed by hospice care for my 92 year old aunt with Alzheimer’s and heart issues. Having the pain management in place for the final days was huge for both my parents. Mom had Parkinson’s disease and contracted aspirated pneumonia which finally enabled me to get a doctor to order hospice for her. She passed rather peacefully about 5 days after her being accepted by hospice. My dad was on hospice for nearly 3 years due to prostate cancer that spread to the bone and kidney. His family physician stated that it would be a “speedy demise,” but certainly wasn’t. Having hospice on board provided medications (some very expensive that at the appropriate time we did discontinue), they had aides that came to help Dad bathe, a chaplain that became a sweet friend to my dad, a social worker, and extra nursing care input when needed. These were the people who helped me walk through the “unchartered territory” for decisions I had to make for my dad. We did not do feeding tubes or even oxygen at the end of life stages. Dad also died fairly peacefully with little pain. Both of my parents were ready for their heavenly home and both had told me that the did not want anything more than comfort measures in their final days.
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Contact Hospice.
The Nurse that does the evaluation to determine if she is Hospice eligible will give you a good idea what medications can be discontinued.
Many medications Hospice can provide. If there are medications that you do not feel should be discontinued and Hospice does not pay for them you can private pay for them.
Hospice will treat UTI's Hospice will treat other infections. Hospice will not treat other things but you need to discuss that with Hospice.
As far as I am concerned you can not call Hospice soon enough . If the person does not qualify at that point they may in a month or two maybe less, maybe more you can never tell what will happen.
But the extra care that you get from Hospice is well worth the phone call it takes.
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Reply to Grandma1954
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pepperpatti55 Jun 28, 2019
yes - i noticed that once hospice gets involved the insurance doesnt pay for medications - even life sustaining medications. The insurance will pay to kill you, but not to sustain your life.
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Update: Hospice evaluation was decided on yesterday. My mil started treatment for a uti on Saturday, Sunday we were called twice. Once to start iv fluids as she was ill and vomiting and then after that we were informed she was being taken to the hospital with issues for kidneys.

My husband met with hospice this morning. Biggest issue is vascular dementia which seems to be progressing quite quickly (from speaking in full sentences last month to losing that ability almost fully). Was a very, very difficult decision for my husband to put her on hospice even though he knows it's the right decision - it's been really tough for us to do this all alone. I so very much appreciate all of the support here. That and the advise was invaluable. Much peace to you all. So many have been through so much.
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Pamazoe Jun 18, 2019
My thoughts are with you and your husband. My mother's gone through very-very similar issues. She had bladder cancer removed last year which stopped the UTIs. But is in same condition as your mil. It's draining on the parties involved mentally and physically, and spiritually.
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My dad 94, has been under hospice care for two years. He gets a drug for hallucinations he has almost constantly now and treatment for utis when needed. Hospice means caring for someone at the end of their life. It doesn't mean letting them suffer until they die!

My dad is slowly slipping away with heart failure, can no longer walk, bedridden mostly except wheelchair to meals at the care center. He also is no longer lucid, the hallucinations have taken over his mind, and he rambles about events that never took place but seem so real to him. He no longer realizes mom and one of my brothers are dead and gone many years ago, and wonders why they don't visit.

I think our local hospice is doing a great job making my dad's last weeks and months comfortable ones.
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Reply to Doublewhammy
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You don't get to decide, there are guidelines now for Hospice. The person has to be evaluated; bedridden and incontinent are not enough to be eligible for Hospice.

My DH was denied until 3 days before he passed away. I told the nurses that God would see that DH got Hospice when needed. On Monday he was ineligible, they came on Wednesday and that was the first day he was unable to stand. I still don't know why they came on Wednesday, but I will be forever thankful as his last 3 days went so much easier with assistance.

If you deny the medications, you can be held responsible. I had my father sign a living will and had it notarized, basically stating that he didn't want to be kept alive artificially.
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I have had 3 loved ones who were unable to voice their end-of-life care choices. I knew them well enough to know what those choices were, and two of the three had signed advance directive statements before they became incapacitated. It was still the hardest decision in my life to step up as advocate for them.

Each had told me they didn’t want to survive in a vegetative state or close to it. For my mother and also for my life partner of 16 years, their brain function was minimal. For all three loved ones, brain damage had left them unable to drink, eat, walk, or communicate.

In each case, I brought hospice in once I knew they would not improve. The hospice teams. educated me on the process and observed experience of dying. It is a fact that good palliative care — keeping the loved one comfortable and managing pain — enhances quality of life for the patient and her or his family. There is a dignity in this approach that totally changes the experience to emphasize relationships and spirituality.

I made very difficult choice to withdraw non-essential treatments (like replacing a pacemaker, which required surgery). For my life partner, I chose to withdraw feeding when it was clear his body was shutting down. He was spared the discomfort and indignity of a feeding tube, and in that way his passing was as close to his wishes as it could be. I kept vigil at his bedside until he passed quietly. It was profoundly moving, and four years on, I have an abiding peacefulness when I reflect upon it.

Best and peaceful wishes to you as you face the experience that confirms our humanity in the most loving of ways.
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Reply to joyce1golds
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I wish people would become more informed about hospice services and the wishes of your loved ones.
And dehydration is a very peaceful way to die. Feeding tubes are not used anymore when someone is dying because it overloads the system and makes the dying process painful.
Do you really want to drag out your loved one’s dying process and cause them more discomfort?
When my beloved, late partner was dying of cancer they made me promise I would not let them be in pain and prolong their life because I wanted them around so when the hospice nurse very honestly asked me can I give my partner morphine every 15 minutes until they died by the end of the night or it could be dragged out another week or two.)
I opted to do the morphine every 15 minutes(actually a relative stepped in). I could never let a loved linger because of my inability to let them go😢
Please everyone, talk with your loved ones and really think, what is the kindest thing to do??? Dying with dignity is not the worst thing....

Love to you all!
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Reply to LadyJ67
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Orlando, I know you state clearly that the colon cancer was many years ago, but how many? Have they ruled out brain metastases?

I wouldn't waste a second on worrying about why nobody has suggested a hospice evaluation, and I certainly wouldn't try to arrange it "covertly," so to speak. Just request it. An evaluation is just that, and commits your husband to nothing.

In spite of some of the things we read, it is not true that hospice or palliative care will finish anyone off quicker than they were going to go anyway. These pathways prioritise the person's own sense of wellbeing above all other factors, instead of sacrificing it to ever-fainter hopes of recovery or of prolonging life; but there's no reason they should be less than satisfactorily profitable for the NH. I should put the idea of their milking her through onerous, futile treatment out of your head, for your own peace of mind.
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orlando101 Jun 14, 2019
Thanks so much. That's great advise. I already decided to just calm down about this my husband will talk to them about the eval. We've been in such "react" mode for so long, that my stress response is always on.

The cancer was 26 years ago - 25 of that she was fairly healthy so very lucky. The main thing is that she has had a lot of infections and a uti four years ago that put her in the hospital for three weeks and moved to her eye. In Nov she had pan colitis and everything went down hill from there.
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Orlando101, you have been through it lady. Great big HUG!
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Reply to Isthisrealyreal
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This is my experience with hospice for my mother in 2010 and my father in 2014. They worked with my parent's doctor regarding the medications. For the most part, both my parents kept their medication plans. However, hospice would only pay for certain ones.
It is my understanding that hospice cannot force anyone to discontinue any medications; they just will not pay for some. Since both my parents passed on within two weeks of acquiring their services, I do not think we had needed to get the RX filled that hospice would not pay for.
Their approach was that they were there to assist us and by calling them, it did not mean that my parents were going to pass on right away. They gave us a kit of medications to be kept in the refrigerator and went over instructions on each one. (I took notes.) We called them if we had questions. My mother passed on in the hospital and my father, in his house. When he passed, we called hospice and they came and helped with having his body removed and procedures to take.
Hospice was WONDERFUL. It was so helpful to have a person to guide you that is not emotionally involved and is thinking logically.
My opinion is to call hospice and see if you and your husband can work with them.
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