My 95 year old husband was supposed to get respite care at hospice of the western reserve. He was still mentally sharp, had COPD but was walking and talking before going to hospice. They put him in diapers, a hospital gown and bed that sounded an alarm when he tried to get out. After 5 days he could no longer walk or communicate. He was so doped on medications. They wanted to put him in a nursing home and I refused. I got him home but he was like a vegetable and died 10 days later. That was 6 months ago and I still hurt and get angry every day. We were married 50 years, no children, and were together every day. I was never consulted on his treatment or if he wanted to come home. We were so close and still in love. I tried to call him but told he couldn’t talk then. I feel like hospice took possession of my husband and decided he was ready to die and gave him drugs “to ease the pain”.
If hospice had murdered her, I wouldn't be writing this now with tears streaming down my face. If only they'd been murderers….
She was also doying okay before the event, After dealing with other health conditions after 10 hospital stay. She was released into hospice care. I was in complete shock and denial, but I just wanted her back home.
We were just having lunch 10 days ago I thought to myself,but after the 10 days in hospice she passed away. I regret taking her to the hospital. Those 10 days I believe destroyed her, and although it's only been a little over 3 weeks I am angry and attempteing to make sence of ithis devastating ordeal every day like you. I can truly feel your pain and heart ache. I am so sorry for your loss.
Hospice care can be excellent but let's be sensitive to the families who feel their loved one fell between the cracks.
I know you want to blame someone and I don't doubt that your husband took a downturn in hospice care.
But, hospice does not "decide he was ready to die". Hospice is a service which attends to people who are dying. They don't help a person to thrive. They simply offer comfort to someone before passing. And that means offering a lot of strong medications. It is unfortunate that your husband was left in a hospital bed, in a gown and diaper, and was medicated instead of allowed or encouraged to exercise. That's just what hospice does. The mistake was putting him in hospice care for respite. There are skilled nursing facilities which will offer respite care for home-cared patients, not on hospice.
8 years ago I put my husband in a short-term (rehab) skilled nursing facility for respite. He was there for 4 weeks. When he got home, he had declined considerably. He lost strength because he was non-cooperative with therapy attempts, and he had been unnecessarily medicated to keep him sedated. I presume because that's easier for the staff. It took me several months to get him back to the strength he had prior to the respite stay.
Medical Aid in Dying allows persons to obtain and self-administer drugs to end their own life. It has to be done before the person has dementia, because for it to be legal, the person must have legal capacity. Oregon and Vermont are two states where doctors are allowed to prescribe these drugs without the person first being a resident, and NJ NY are contemplating also allowing that.
There are several methods that can be used. Final Exit is an organization that will help (where it’s legal) with teaching a method and how/where to get supplies for using nitrogen gas. The person has to turn the knob on the tank themselves.
Another approach is VSED or Voluntary Stoppage of Eating and Drinking. Our presenter said that that approach generally takes ten days, and is harder on the person and their loved ones.
He said it’s important to get paperwork in place to support these decisions, in advance, and to be discreet about it even where it’s legal.
There’s a newer advance directive available called SADD (bad acronym), Supplemental Advance Directive for Dementia, for people who worry about getting dementia and becoming trapped—it must be done in advance.
Hospice should be tried first. There is always an opt-out for individual doctors who cannot support it, and it’s been found that only 1% of those eligible in states where it’s legal actually use it.
Opponents of Medical Aid in Dying say sometimes doctors diagnose the end of life incorrectly, and that making it legal could make an already vulnerable population even more vulnerable, or lower their standard of care. I don’t know if that’s been shown in the places where it’s legal.
Quote from an online article:
Dr. Jeremy Boal, former chief clinical officer at Mount Sinai, supports the bill as both a physician and as someone who witnessed medical aid in dying firsthand: “If this law is passed, not one more person will die as a result of its passage. But many fewer will suffer. Of that I am confident. Medical aid in dying is a blessing for all of us,” he said in January.
End-of-life stuff can be very confusing, and it sounds like you weren't given the information you needed to understand what would happen when your husband went into hospice. I wouldn't say they "killed" your husband, but it's entirely possible they didn't give you all the information you needed, or at least didn't make sure you understood it.
Several folks have recommended grief counseling, and I will add my voice to that. You have a lot to work through, and a good grief counselor will walk with you as you do so, and will listen and help you come to terms with what happened.
I get frustrated when people say "90+ is a good, long life." Yes, it is. But also, we still want our people with us for as long as possible. It's so very hard to let go after a lifetime of loving someone. My parents are in their 90s, not in the best of health, and I know we are living on borrowed time with them. Even with the promise of heaven and being reunited with them someday, I am not ready to let them go. So just because your husband was 95 doesn't mean you were ready, either. A good grief counselor can also hold space for that, and hopefully not tell you to "just be thankful for getting to keep him that long."
Prayers for you as you go forward in this life without him. I hope you can find peace.
one minute she was talking and seemed ok, then when she went into hospice, they gave her a sedative and she never woke from it again. I was not prepared for that at all. They even said to say goodbye , because she would stay sedated. I just did not understand why she had to stay sedated. She was not in pain before the sedation. It all happened so fast.
I too was very angry, but she did have cancer, was declining, and would have only suffered more. I too did feel like they killed her. They gave her no nourishment or fluids, and essentially, starved her to death, and then said she was sedated and felt no pain. I have read that starvation is very painful. How can any of us be sure that just because she was sedated, that she did not feel the pain of starvation????
It was very hard to wrap my mind around the fact that such a precious Mom, super smart, physically fit, loving Mom, Grandmother, and wife, with one hell of a will to live, could just decline so fast. She had fought her cancer so ferociously, only to lose the war. It has been years now, but I still hate that there is not some type of quick and humane way to end life for people when they are ready. It took my Mom days to pass from starvation. It gives me nightmares. I realize that Hospice is there to help people during such terrible times of people losing their loved ones, but the process should be better for the patients and the family.
I do agree that your husband probably would not have had much quality of life with COPD at his age, but on the other hand, how do they really know that for sure??? I am so sorry for your loss. 🙏❤️🍀
It’s harmful to feed people when they are in the dying process. It hurts them because their bodies are shutting down.
I’m sorry your mom died.
I’m sorry your husband died and under those circumstances where it sounds like you weren’t able to be there. That is terrible.
My condolences on the loss of your dear husband. Please seek grief counseling and realize 95 yrs is a very long life, especially considering he had COPD! You were both blessed.
You sound like a very bright lady.
That alone lets me know that you will understand how unusual, near miraculous it is for someone to survive to 95 with COPD, let alone to survive at all. My partner, now 85, and I at 83 often tease one another that we are long past our "sell-by" date.
Firstly my condolences.
Secondly you ask how a doctor can determine a patients readiness to qualify for Hospice? One answer is that a doctor CAN'T and often misses the mark given we see folks here disqualified after 2 1/2 years on what was in the doctor's learned opinion another six months at best. Another answer is that the doctor uses all his training, all his history and expertise by watching and judging, all his tests, all his xrays, all his blood work to put together a "likely scenario" that either will or will not be God's truth in the end. The third answer is that it is a guess, and Hospice will give extra care, extra equipment, some respite, some comfort of clergy and social workers, and so he will make a guess-ti-mite.
Pick any answer you want, but your hubby didn't die due to Hospice. Your hubby didn't die due to lack of loving care. Your hubby died from complications of aging and COPD, and you could never be ready for that loss. And are grieving.
I am so sorry. Truly I am. Please give yourself time. Know he will always be with you. Know he did his best and so did you, and so did everyone else. My heart goes out to you.
Someone had to sign the paperwork for him to enter hospice. Was that you? Someone got him home - you say you did - how was that "hospice taking possession of him" when you were able to take him home? They recommended a nursing home (this is where very sick patients get the 24/7 care they need), but you refused. How is that "hospice taking possession of him" when you were able to refuse the care they recommended and that he must have needed if they did? Hospice always includes spouse and family in discussion of care. They explain it carefully. Do you not recall any discussion like that?
Did you know how to care for him at home at the level of care he needed? Where was his doctor, who would have had to recommend and approve his entry into hospice? And perhaps would have had to approve his exit from hospice care when you insisted on it? Did you talk to the ombudsman in the course of your husband's experience and tell the ombudsman that his rights were being violated? You would have been informed of an omsbudman's services in the papers signed when he entered their care.
Your husband was 95, his condition was deteriorating enough that hospice was recommended, and of course hospice gives drugs to ease the pain. He had demonstrable pain if they did that. I believe your anger is misplaced. You are grieving. Your husband's time was over. Please address your denial and seek grief counseling. It is available through hospice services, which still might allow help for you even though you kicked them to the curb.
I speak to you as the beloved wife of my husband, who can't walk or talk intelligibly due to exposure to Agent Orange during his two tours of duty in Vietnam. We have been a devoted couple, and for that reason, when his time comes, I will be ever grateful for hospice, in whose care he is now.
Again, I am sorry for your loss.