My 80 yr old husband is very ill and in so much pain. First, let me say we have talked about being ok concerning end of life care our entire relationship. Unfortunately he is now showing rapid cognitive decline. Several days ago he didn’t know who I was or that we were married. At times, he can’t remember where he is and is having auditory and visual hallucinations.
He has advanced kidney disease, and mostly likely multiple myeloma. We are waiting results of test for that diagnosis.
The worst medical condition is his bones are becoming so fragile that he has fractures developing in his spine. The doctors won’t give him more powerful pain meds because of his kidney disease and low platelets. They also can’t do a epidural or cement the fractures. He has been suffering for months. He has become house bound and very depressed. He has very good doctors that just give me the blank stare when I ask about what to expect in the next few months. This is no life for him or for me. We have been together 10 years and have traveled world. If I bring it up to the doctors will they think I am pushing him into hospice care? With my parents it was so cut and dried, I knew it was time for hospice.
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Backup of the post’s body: My 80 yr old husband is very ill and in so much pain. First, let me say we have talked about being ok concerning end of life care our entire relationship. Unfortunately he is now showing rapid cognitive decline. Several days ago he didn’t know who I was or that we were married. At times, he can’t remember where he is and is having auditory and visual hallucinations.
He has advanced kidney disease, and mostly likely multiple myeloma. We are waiting results of test for that diagnosis.
The worst medical condition is his bones are becoming so fragile that he has fractures developing in his spine. The doctors won’t give him more powerful pain meds because of his kidney disease and low platelets. They also can’t do a epidural or cement the fractures. He has been suffering for months. He has become house bound and very depressed. He has very good doctors that just give me the blank stare when I ask about what to expect in the next few months. This is no life for him or for me. We have been together 10 years and have traveled world. If I bring it up to the doctors will they think I am pushing him into hospice care? With my parents it was so cut and dried, I knew it was time for hospice.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.
He is suffering and needs around-the-clock care. Hospice is a better choice for him. It doesn’t mean that you don’t love him. You can’t manage this by yourself, you need help.
I’m surprised they haven’t mentioned hospice care already for him, You can get it even if you’re not about to die in a few weeks. My father has hospice care now but he’s not sick to the point of just hanging on. He’s just at a point where he could use more targeted care.
Just know that not all hospice providers are equal. There are some really bad ones. If you don’t like the one you have, you can always choose a different company. Ask your doctor and friends/neighbors and places like NextDoor for recommendations.
You can also get round-the-clock in-home hospice care for your husband. Vitas or similar will provide a hospital bed and any other equipment he needs in addition to the staff. You just have to make space and provide comfortable seating because they work 12-hour shifts.
The Drs may be waiting to hear it from you so they don’t seem to be pushing it on you, or they don’t know the full impact his needs are having. Either way, it sounds like time to have a frank and direct conversation with them about the level of care and support both of you need, whether that’s more help at home or hospice care.
Sending lots of love, it must be a terribly hard thing to go through.
I’m so sorry. I don’t know what the difference is, but there is something called palliative care. My mom was on that and also she had a DNR. Near the end she was on morphine and I think oxygen. She was 84 and had been suffering for years. I was with her when she passed and it was very peaceful. That was Nov 2021 and I miss her all the time, but I wouldn’t wish her back.
My mother also had spontaneous vertebrae fractures. She had surgery on the first two but they wouldn’t do surgery on the others.
The time is now. Make the call.
There is no reason to wait till last days to call home hospice care. They have knowledge and experience dealing with pain and discomfort in our last journey. I would call asap to let your husband have as best last weeks/months as possible.
“Hello doctor, at what point do we move towards just comfort and pain relief? He’s mostly suffering, is there an improvement in his condition expected?”
Hospice doesn’t mean death is imminent. Most have 6 months of care and this can be recertified if necessary. My FIL was in hospice care for about 7 months. My Dad lasted about 15 days. Under hospice they can provide hospital beds and necessary equipment, an aid several times a week for bathing, etc. and regular visits from a hospice nurse if his hospice is set up in your home. My Dad went to a hospice center after agreeing but later said he didn’t think he belonged there. We told him if he wanted to back to his assisted living we would respect his choice. He stayed. (I was 2 miles away and was there 830am to 9 pm.). Hospice gave everyone a chance to be there and say goodbye. Especially if he had renal failure and multiple myeloma, you want him to be as comfortable as he can be. I know how hard this is but speak to his medical team to see if they have a social worker or palliative care specialist to see if they will talk with your husband. I really feel for you and wish you peace.
Same
It is probably time to stop with the medical tests. Doctors seem (sometimes) to want to test and poke and prod even when the patient is obviously not going to get well. I wish you peace in your heart.
My FIL had hospice care for 6 months before he passed. The Dr recommended it because he was too weak to be taken to all his Dr appointments. He could get up and dressed with help, but couldn’t shower or take care of himself.
He lived with us but a care home health aid came twice a week, a nurse came twice a week alternating days from the aide. A family nurse practitioner would come once a week to see if any medication needed adjusting. They even sent some to cut his toe nails.
He was a Korean War Vet so hospice sent a volunteer to come and reminisce about being in the service. They also sent a Pastor to come and visit.
Talk to your Dr about what kind of help is needed.
Now
Hospice care is the best. A lot of people think it is quick path to death but actually it is more “palliative” and focus is making people comfortable.
Hospice does not rush the dying process. It provides palliative care so his suffering can hopefully be lessened. And hospice workers are wonderful in providing support to you and providing information on dying.
Hospice does not try to prolong life, so they may prioritize the pain meds over the stability of platelets. That may be what’s best.
It sounds like he is immense pain. Do what you think is right. Hospice may be the the best way to make sure he’s not in pain when he passes. They will take him off of all of his medication and give him something for pain. Are you ready for him to pass? The medical staff are very unjudgmental about these things.
It’s been time for hospice.
Hospice is a topic that should already been mentioned by a health care professional. Bring it up. I was in the discussion when my mom went into hospice. It was such a benefit to her.
Ask for a palliative care referral ASAP. Palliative care will manage his pain and have an in-depth conversation about what’s most important to you, which may lead to hospice if it is in line with your goals.
I’d think his care providers would go there when appropriate.
Definitely sooner rather than later. Hospice was wonderful for my 82 year old mother with gastric cancer and kept her at home and comfortable for her last eight months. Helped me enormously as well. A very different experience from my father’s illness with congestive heart failure twenty years earlier with no hospice and a long hospital death without family support. Hospice is truly wonderful when done well. It’s sad when patients only are referred in their last week or two of life.
He should probably be in hospice as of now. He would probably feel better and more comfortable in a hospice facility at this point, even if he is confused about whereabouts. I hope things go well for you both.
There is in home hospice and regular hospice. There is nothing wrong with putting him in hospice care. He needs round the clock help.
I’m a hospice RN (25 years). Do it immediately. If he doesn’t qualify they will tell you. If he does, it’s what he needs.
Number one piece of advice: get a non profit hospice, you will get much better service. I’ve worked both and trust me.
You can self refer, meaning you pick a hospice and call them directly, they will send a nurse to evaluate and admit right from your home. This could take several days or more depending on the hospice’s availability.
Alternatively you can take him to the ED for pain management and hospice placement, meaning he stays in the ED until hospice is set up, usually that can happen within 8-24 hrs. If he’s in pain now you should go this route.
Your primary care doctor can also refer, this takes longer and they may have relationships with for profit hospices and I don’t recommend those.
I’m sorry you’re both going through this but hospice is a great blessing, call them now or get him to the ED.
You have more power than you know. You can refuse him being discharged from the hospital as being unsafe for him and for you. They will hook you up with hospice.
If you live in a very rural area everything takes longer, usually. But just stick to your guns.
ETA the longest patient I cared for on hospice lived five years from admission. Rare, but proof we don’t hasten death, we allow nature to take its course while keeping the patient comfortable.
If he would reject hospice just call them the “visiting nurse”. If he asks directly we will tell him but we’re ok not just throwing it out there.
Part of Palliative care and Hospice is to make the patient comfortable and to give the primary caregivers (spouses, children, etc) quality time with their loved ones. I used to work in healthcare and had several patients who had both types of care (not a nurse, just HHA) There is nothing wrong with talking to someone about hospice (or palliative care) It sounds like at this point you need help and support from medical professionals who will take the time to actually listen to you and answer your questions.
I’m drunk at a bar at 12am and now trying to explain to my fiance why I’m sobbing at a reddit post. I am so sorry you and your life partner are dealing with this. I wish you all the best and him all the peace. I can’t imagine the torture you’re going through with this decision.
He should be on hospice now. Do not wait another minute. Sorry your both are going through this.
He is dying. It’s well past time to prioritize his pain management rather than his platelets. Please take him to the ED or call his primary doc ASAP. You love him; you owe him this. He deserves to be comfortable.
I’m sorry that this is happening to you and your husband.
Hospice isn’t necessarily only for cases where death is imminent. I took care of my grandmother for two years following a stroke, she was on hospice with weekly visits the entire time and it was INCREDIBLY helpful.
I’m not in medicine, but I very much doubt that the doctors will think ill of you asking about it. The hospital that my grandmother was treated at had a doctor whose only job was to organize hospice treatment, and it’s extremely likely that your local hospital has something similar. I would speak to your husband’s primary caregiver about getting you in contact with that sort of person, and if they’re not receptive to that or don’t have the ability/will to do it, I would find a physician in your area who specializes in geriatric medicine. A geriatrician will certainly have a working relationship with people in hospice and will be able to walk you through what the process and expectations will be in your area/state.
Getting my grandmother into hospice was the absolute best thing that we ever did for her, and we wouldn’t have gotten through her final years without it. Getting someone hospice care is unequivocally, 100% an act of love and in no way means that you’ve given up on them, or anything like that. It means the exact opposite: you’re doing your absolute utmost to get them the care that they need.
Again, I’m sorry this is happening. I wish you both the best, and your husband is very lucky to have someone who cares deeply enough about him to be asking these sorts of difficult questions.
It is already time for hospice care, he is housebound and in pain, don’t let this drag on any longer. Hospice is the kinder option for both him and you. It means too that you can continue to be his wife without being his nurse.
Rapid cognitive changes in the elderly can be from an undiagnosed UTI. Worth a pee test
Some places can do home hospice may be another option
Does your home health provider offer hospice services? If so you should ask if they can evaluate him.
Also you can ask for palliative care options regardless of it being hospice or not
Hospice medical people have a completely different mindset. They focus on quality of life and comfort not remote possibilities of cures. Perhaps you can consult with one together. You’ll get a different perspective on his condition.
I am at this point with my dad. We have a meeting with palliative care next monday but I want to bring in hospice as well. Trying to find the right way to bring it up is difficult. Approach with care and understanding.
Here’s a segment John Oliver did about hospice companies. The one we currently use is great but not all of them are. Don’t be pressured into using a particular company if you don’t like them or get a weird feeling about them. https://youtu.be/u2ii0DCREzA?si=-KUmLQH_H8bkMF3l
Now! This sounds so much like my Dad in his final months. Allowing hospice in gives so many more options to the patient that a regular GP/Specialist would be unwilling to offer. I’m a longtime chronic pain sufferer and nobody should have to deal with inadequate pain control (let’s be honest it’s never alleviated, but control is paramount). Prayers for you and ur hubby!