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?
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.
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.
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.
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.
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.
Withdrawing medications, food and water to someone who is totally dependent for survival from others reminds me of the Karen Ann Quinlan case--the girl became brain dead after abusing drugs and alcohol, and was kept alive with feeding tube. The family argued over stopping tube feeds vs keeping her fed. It became a supreme court case and the governor of Florida signed the order to allow the husband withdraw tube feedings and it took quite a while for her to die. To me this is someone similar to end-stages of Alzheimer's and you will have to tangle with that issue yourself what is right or wrong.
For myself with my mom at the very end stage of Alzheimer's and she is nearly 90--I still manage to feed her but it takes over an hour, and keeping her hydrated is in itself a full time job. I probably would go for a feeding tube and revoke her hospice because I personally cannot stand to see her slowly die of dehydration because she is my mom and I love her dearly. But the feeding tube is a LAST resort only. Now if my mom is continually suffering that is a different story..well overall yes her care is very very hard and I take it a day at a time, but overall she's not suffering. So I'm not pulling the plug on her. But if she goes unconscious and is not suffering, I will let her go.
Mum has been on hospice for nearly a year. But I do ALL of her care. No nursing home for her. Not ever. It's hard but I also keep her walking with her walker. It's a bear getting her out of bed but once up she's okay.. If I did not get out out of bed she would be bedridden, and it only takes a day of staying in bed to do that. This often happens to hospitalized patients with severe Alzheimer's. They end up discharged and lost their ability to get out of bed because nurses keep them in bed due to fall policies. In bed they don't fall, so the nurse is safe from hospital repercussions.
I agree that there are cases in which the plug is pulled on appliances which are faulty and beyond repair rather than definitively broken as such. They are hard cases which I personally feel outsiders should hesitate to comment on. More recently than the very famous one you mention, a dispute between a man's parents and his wife also went the judicial distance in France (I think it was): I'd have to check what the decision was.
I've checked - he's still going, but his case has now been referred to a UN Committee on the Rights of Persons with Disabilities. Vincent Lambert is his name, if you're interested; and there is a discussion of his case and the issues at https://vip.politicsmeanspolitics.com/2019/05/24/withdrawing-life-support-only-one-persons-view-matters/
The article is very interesting but its conclusion is feeble. In the absence of certainty about the person's own wishes, what then?
I have digressed horribly. I just wanted to say: before you subject your mother to a feeding tube, please be sure that her body is capable of handling it. May you both be spared this and similar impossible decisions.
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!
They have to have 6 months or less and they have to meet FAST scale criteria. We took our mom off all meds the last month she was in hospice. All meds means only what hospice gives. Ours was step approach. Morphine not started until very few last days.
Hydrocodone was used for a month and a half roughly prior. Oral solution. Our experience with hospice was a godsend.