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Okay, going to be a long post! Mark, my husband and I have been married 15 years. We have a 24 year age difference. When we married I knew he had PKD and figured he would have to be on dialysis at some point. After his hip replacement, he had to be in a wheelchair but could still transfer and even drive. I had to help but he could still get on a bedside toilet, dress, etc. He is mentally alert (no dementia). He does have COPD. Well, two years ago, he had a cancer diagnosis Stage IIIB NSLC. He got chemo and then immunotherapy and he has been NED.



Recently, he was admitted to the hospital for plueral effusion. This was tons and tons of fluid being pulled which they have figured was from his end stage renal failure from the PKD. They have a small drainage tube. If all that needed to be done was that, I could handle it. However, he had been having a chronic wound cared for for over a year on his leg (a regular wound doctor) and now he has a bone infection. They keep saying they will have to amputate (above the knee). This has been put off because he has had low blood pressure, the dialysis, and now his platelets.



The only positive thing was the chest fluid was tested and not cancerous. A little background, Mark smoked for 40+ years and quit 7 years ago, but not doubt it has done a number on his body at only 61. Am I looking at hospice care?

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I would suggest you get real with his doctors. Ask them about his prognosis. If you can get his CBC numbers corrected and on medications to increase blood pressure, he would be a good candidate for surgery. Dialysis does not keep him from having surgery. You might need to get him into a larger hospital that has more doctors with more specialties to get his surgery completed. If he is not a candidate for surgery - given all his co-morbidities - then no surgeon will do the surgery. The surgeon should be the one to give you are realistic prognosis. If the outcome doesn't look good (death in about 6 months), then ask for hospice. If you and he are just looking for care to keep him pain-free and functional for as long as possible, ask for palliative care.
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Although he is not technically an “elder”, I would seek out an elder care attorney for a free consultation. If your income keeps you from qualifying him for Medicare, there are options that might help you. I’ve known of couples who even go as far as divorce to separate the assets, it’s just a legal maneuver. Don’t try it on your own, get legal help with this, otherwise you could devastate your own finances and while you are still young, you will need to retire one day.
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I am so, so sorry you are faced with this. I lost my husband of 45 years last April after being diagnosed with stage 4 cancer. I’m sure your husbands situation seems grim, but if he wants to fight I’d encourage him. My husband did not want hospice services but in the end, when he walked into the hospital on his own, the hospital just said he was dying and would only give him stronger pain medicine if he agreed to hospice. After vomiting and massive headaches he agreed to hospice. He was gone 24 hours later. I was angry but glad he no longer had any pain. I made sure he understood when he agreed to hospice that he was no longer fighting the disease and it was what he wanted. My life is empty without him and every day I wish I had him back. But ultimately I was not the one to make the hospice decision, only he knew when he’d had enough. It all happened so fast and seemed so unfair. Life is unfair. My Mom with dementia will be 101 in July. My prayers go out to you and your husband. There really is no way to plan for such a devastating loss.
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I am sorry to hear of your husband's multiple health challenges, DoggieMom. What are his wishes? Does he want aggressive treatment of all the conditions? Or is he getting tired of the dialysis and all the rest?

My dad is 80 and went into home hospice care in early January. He did not wish to keep going to multiple different doctors seeking various diagnoses and treatments. He wanted palliative care only for pain and comfort. My understanding, at least here in my state, is that to qualify for home hospice, the dr must confirm that death is expected within six months -- though this is NOT always the case, as some others have attested. Some patients go on to live two years or more. So far I have found hospice to be extremely beneficial. They provided all kind of equipment, medicines, are on call 24/7, a nurse practitioner visits 2X per week, an aide comes for 90 minutes once a day 5 days/week, all paid by Medicare. The hospice has other home health aides who can come for as little as two hours, up to 8 hour shifts around the clock, that we pay for if/as needed.

The way the hospice explained it to us, we could change our minds, go to the hospital, go back to seeking diagnoses and cure, but then hospice support would be suspended.
Best wishes to you both.
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My heart goes out to you during this trying time with your husband. I can tell that you are a very loving and caring wife. I am sure that you have many questions about your husband’s care, so don’t hesitate to ask your husband’s doctors about his treatment and care. Your husband’s doctors will be happy to answer all of your questions and they will help you and guide you to make the right decision about your husband’s treatment and care.
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The update is not looking so hot. They found a spot on his lung which looks a lot like cancer. It is possible it is not but of course he is scared having Stage IIIB two years ago. He did chemo, proton radiation and immunotherapy and as of six months ago was NED. That would explain why his health went into a waterfall of yucky. This is why they postponed the amputation because of possible lung cancer.
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Llamalover47 Feb 12, 2024
DoggieMom86: So sorry.
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Of course, your husband *wants* to live. Unfortunately, he is very sick and I think you're looking at what quality of life is realistic. He could have the surgery, have more complications, which amounts to a prolonged stay in the ICU where he may die. I would ask the doctors point blank what he's facing both in terms of the risks of the surgery, his comorbidities, and the weeks-to-months of rehabilitation in a nursing home. And then you two need to talk about what he thinks about everything that the doctors are saying.

Many doctors give patients false hope but if you know the right questions to ask, they will guide you to making a decision that respects him. Hospice may well be the right decision. I agree with you that he cannot be managed at home.

This all sounds so sad and exhausting. Remember to take care of yourself.
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I will give some updates with the information I have. He has been doing dialysis three to four days a week. He has not had the surgery because he's had so many things wrong including a low platlet count and RBC (he has had anemia for ages). He has PKD and it has progressed to a more advanced stage. This is why he had fluid on his lungs because of the kidney disease. I have been dealing with him having a hard time controlling his pee. I have been woken up at 3 or 4 a.m. to find the bed on his side soaked because he took a muscle relaxer that makes him fall asleep while peeing in the urinal (yes it is a mess). He will have trouble peeing in the urinal and get it on himself and his pants.

He had the hip replacement after he finished with cancer treatment. He had a sort of freak thing happen of osteonecrosis of the hip bone (it looked like a sickle) and he could limp around for over a year. It finally got to the breaking point where I cold called doctors to find a surgeon. We had to wait two months were he was bedridden (literally) and had to use a Hoyer lift. His daughter was still alive and helping me while I was at work. In any case, the nerves quit working right in the replacement and he has been wheelchair bound. I was able to assist him getting to a bedside toilet and transferring until this happened.

The hospital has put off doing the surgery 4 times because of various issues. The only reason for amputation being the osteomyletis could spread and cause sepsis. He has a wound in his leg that started with a scratch (he used his toenail to scratch himself). This turned into a tunneling wound that a wound care doctor has been caring for for over a year and now has turned into this. Could he gain mobility in the future? Maybe, to an extend. Right now he is so weakened from being in the ICU for a month. He is on about five different IV antibiotics.
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Grandma1954 Feb 12, 2024
Thanks for the update/added info.
🙏
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My heart goes out to you.
You need to speak to his MD. (Have you and if not, why not?)
I believe MD has to authorize / arrange Hospice

Perhaps what you are asking is:

What are others' personal experiences with Hospice and initiating Hospice care.

Do know that a person DOESN'T NEED TO BE TERMINAL to qualify for hospice care.

In addition to contacting / asking his MD, do call a local hospice. There are generally several in any given area - and (unfortunately) the quality of care can differ widely depending on which Hospice you use. If I were you, I would ask for recommendations of those using Hospice in your area - (perhaps through Next Door, a church, MD office). MD's may steer you to a specific hospice, although I believe you can use / contract with whichever one you want.

The plusses of Hospice care is that your husband will get more care although be very clear on their intention ('comfort care' (not meds to keep him alive). They may continue some meds for comfort care although they are not 'in the business' to reverse or improve care (by way of medications or MD intervention (to improve / keep a person alive.)

- You will also need to work with Hospice MD (not your husband's current MD) although his current MD 'may be' consulted or somehow - perhaps minimally involved with decision making (or not).

I wish you well in this. It is difficult, painful, hard for both of you.
Do use this site for support. There is a lot of support available to you.
In addition, do (continue) to take care of yourself: eat as healthy as you can, exercise, get out / take respites / get caregiver(s) in to give yourself 'time off.'

You need to take care of YOU to keep going and be the best you available to your husband.


Gena / Touch Matters
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My DH had a below knee amputation Dec 5th. He accidentally tripped in the garage and days later (mistakes were made in diagnosing) a break was diagnosed. By then a bone infection was identified. Those days were very, very difficult. Once the leg was removed and infection aggressively treated, he feels MUCH better. He’s now in rehab, learning to use his prosthetic. His spirits are upbeat and he feels better than he has in years, looking forward to coming home with improved mobility. He’s already started walking.

BTW, he’s 20 years my senior and we’ve been married 36 years. We’re not kids. He’s 83. Perhaps DoggieMom, if that infection can be resolved your DH may also feel better too. Wishing you better days ahead.
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I am interpreting your question a little differently than some others who have answered. When you ask about facing the music and hospice care, is the underlying question whether it's likely your husband will die soon and so should receive end-of-life care?

I think you can get a better answer from your husband's physicians on his prognosis, although I think physicians may have more difficulty in facing a patient's probable end-of-life than the patient or the patient's loved ones. There is a fairly immediate decision to be made here that your husband has to make himself: is he willing to go through amputation and the possible attendant problems? The possibility of amputation may have been lurking in the background for a long time; so he may have a good idea as to whether this is acceptable to him. If he does not want to do this, then you have most of your answer: it sounds like your husband will not survive unless he has the amputation.

It also sounds like there's a good chance of his several other health issues eventually worsening or recurring. But a lot will depend on whether he wants to push forward; it sounds as if you will support him in whatever choices he makes. As you point out, he is only 61. While he has had enough health issues to be much older, the quality of your lives together still sounds good. As others have pointed out, if he has a successful amputation, it seems probable that he will live more than six more months, in which case he would not usually be eligible for hospice now, although some doctors will prescribe hospice care when the life span in a progressive situation is indeterminate. Hospice care does thus not seem inevitable very soon, but it's something you should probably be looking at for future planning. As others have said, for right now, palliative care could be a good option.
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DoggieMom86 Feb 12, 2024
I would say it has been okay. I have the problem of not being able to drive in the big city, but my wage covers our basic costs and some fun outings occasionally. It has been hard the less mobile he has gotten. I knew he had PCD when we married and that would get worse with time, but I figured the worst would be he would need to go to dialysis and although far from pleasant, people get by. Then the cascade of medical problems began starting when he got cancer. He is NED from that, but then his kidneys failed, the chronic leg wound started, and the hip (come on, a break is needed!). I admit, I am mentally not that strong having autism, depression, and PTSD but have been doing my best to hold it together since his other family doesn't want to help.

As for the leg, they say if he doesn't get it amputated it can cause sepsis which would most likely kill him in a matter of hours. He says he wants to live. I will support him if he wants to do that, but I am thinking actual care of him will have to be in a facility. He is a big guy even though cancer caused him to lose weight and I can't physically lift him by myself (I have hurt my back several times and had to have firefighters come help me get him off the ground). If his mobility is limited, he will need a lot of assistance to get into a chair to get dialysis and I know I am not strong enough.

Someone asked if he is a veteran, the answer is no. He was on disability when we got married but is on Medicare and not Medicaid. The crummy thing is with my income the money is too much to qualify (isn't the system nice?)
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Isn’t the question about what HE wants, you said he dies not have dementia and is mentally alert so the signature for hospice would be his and not yours. So the discussion is long overdue.
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DoggieMom86: Prayers sent for your most challenging of times.
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Making the decision to place a loved one in hospice is one of the hardest decision you’ll ever make. You’re debating it now, but you haven’t signed the paperwork yet. That’s when it will be real. Has your husband expressed frustration with all these procedures? Is he getting tired of it all? What is the projected quality of life for him? This will entail a frank conversation with the doctors. Often they are about fixing things and not understanding the ramifications of the life dealing with the fallout of all the procedures. Often families want the doctor to do all they can to extend the life of the patient but they don’t understand how this will affect their loved one. This will also be time for a frank conversation with your husband. Hospice will be about making his life as comfortable as possible. A book titled Being Mortal by Atul Gawande helped me make the decision to put my brother with brain cancer in hospice care. Hospice was amazing. Treatment would have been torture for him.
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97yroldmom Feb 11, 2024
One of my favorite books Katepaints.
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Hospice isn't just "death is imminent". My mother (96) has been on Hospice care since March 2023 and it's been a real blessing. They are on call 24/7 if I need them. My mom gets a weekly nurse visit and Nurse Practitioner or Doctor visits every 4-6 weeks. They can take over prescription refills, they have provided Ativan for nighttime anxiety, Milk of Magnesia for constipation, etc. They can provide supplies - we have an oxygen machine, a nebulizer, a floor pad for beside the bed, etc. They also offer an aide to do twice weekly baths and she will even change the sheets if needed.

Have your husband's doctor write orders for a Hospice evaluation so they can come out and let you know if your husband qualifies and what they can offer. You don't have to accept it if you're not comfortable.

I also agree with Lovelyliz - I wouldn't put him through an amputation of his leg - then you want to talk about a wound? I've never seen an amputation solve anything. Just my opinion based on observation.
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dont amputate the leg . hes been thru enough ask dr to make him comfortable until death/ he will no longer be as independentas he is now.
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Igloocar Feb 14, 2024
However, he has said he wants to stay alive. He has already lost a lot of independence, and from what DoggieMom86 says, he remains in pretty good spirits. His years of PCD may have taught him to adapt to continually worsening health circumstances.
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Good Afternoon,

You could start with Palliative Care. Your doctor would be the one to decide if Hospice is needed. Hospice can go on for a number of years and would provide the assistance you would need.

Some people say the sooner the better but in some States due to a staffing shortage they are lengthening the call time when to actually institute services.
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infomom Feb 11, 2024
I put my husband on hospice care two weeks ago. He has congestive heart failure, 3 heart attacks, 1 cardioversion. He is 76. The best decision I have ever made. He will be reevaluated in 90 days and then they add as needed. Do it early rather than late.
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I suppose the questions are..
Can he possibly have surgery for the bone infection?
If so what is the prognosis after that?
Can he, will he participate in rehab?

And the biggie questions...
What does your husband want to do?
How does he want to spend the remaining year(s) he has?
Does he want QUALITY time or QUANTITY time?

I can tell you from personal experience that the choice to place my Husband on Hospice was one of the best decisions I made when it came to his care.
I / we had a Nurse come 1 time a week to check on him. A CNA 2 or 3 times a week to bathe/shower him and order supplies. I got all the medications, supplies and equipment delivered to the house. I got the support I needed from the Hospice Team, I got the education I needed so that I could safely care for him at home.
With Hospice you can also ask for a Volunteer that can come and visit with him.
(By the way Hospice is not ALWAYS 6 months or fewer. My Husband was on Hospice for almost 3 years)

This honestly is a decision that he has to make the hardest thing for you to do is support his decision.

Because it is me responding...I ask this a lot.
Is your husband a Veteran? If so he may qualify for some help from the VA. It might be a little, it might be a LOT. And the VA can now pay spouses to care for the Veteran.
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Hospice isn’t just for end of life. They will do care in your home. Call the Area Agency on Aging for your area (or your Dr) and they will give your hospice contact. Hospice will come out and do an evaluation to see what would be best.
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Hospice is hardly a death sentence--my MIL was placed in Hospice a year ago and she's still here.

In her case, it seems to have been more palliative care than EOL Hospice.

Either way, it is good to have the support of a team of people, rather than trying to navigate these waters alone.

Wish the best for you & hubby.
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As a loved one you only want what’s best for your spouse. In my case is was an easy choice because I could not get the care I needed through the normal channels. In desperation it was easy to ask for it. Realize it is not a death sentence if they recover you can go off of it.
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If Hospice Care is merited, it does not "take over" hands on care. Hospice would stop curative treatments and supervise end of life medicines. Either you or someone you hire or a nursing care facility would still need to daily physical care, wound care,
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Below is a listing for palliative care in your area. Check out their website and give them a call to see about a referral from his physician.
Baylor Scott and White Health, Baylor University Medical Center Outpatient Clinic10.62 mi
Address:
3600 Gaston Ave Suite 605
Dallas, TX 75206

Baylor Scott & White University Medical Center - Dallas Palliative Care
Phone: (214) 820-9248
Accepts referrals for:
Adult Patients
https://www.bswhealth.com/support/supportive-palliative-care
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Please look into palliative care. With all the things you are dealing with they could be a tremendous help. Please ask his doctors for a referral.
"Palliative care is specialized medical care that focuses on providing relief from pain and other symptoms of a serious illness. It also can help you cope with side effects from medical treatments. The availability of palliative care does not depend on whether your condition can be cured.
Palliative care is provided by a team of health care providers, including doctors, nurses, social workers, chaplains and other trained specialists. The team works with you, your family and your other providers to add an extra layer of support and relief that complements your ongoing care."

https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637#:~:text=Palliative%20care%20is%20specialized%20medical,your%20condition%20can%20be%20cured.
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ElizabethAR37 Feb 6, 2024
I think palliative care is definitely something to look into. Even if it's not appropriate just yet, it likely will be in the future.
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If hubby is in end stage renal failure, ask the doctor his prognosis and if S/He thinks a hospice evaluation is in order?

I'm sorry you're both going thru such health issues. God bless and best of luck.
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You are looking at a huge number of complicated and awful diagnoses and I know that you know that. However, you do not mention that at any point has any MD told you that there is no likelihood that your husband will live more than six months.

Am I right in this? Because if so, there is absolutely no way that Hospice is here, or perhaps even near. The lung problems now are complicated. Yet not cancer, and being treated.
The leg will need amputation you told us on another post and there is a bone infection. Unless this bone infections becomes sepsis, which would take your husband before you could even get hospice on board, then this is not a deadly diagnosis.
You husband is on and will continue to be on dialysis.
He is mentally alert.

I cannot imagine that Hospice is in the equation, but only your husbands doctors (and I imagine there are more specialists involved here than a few) can tell you if hospice is an option.
Your husband is not dying. But he is dealing with more and more unimaginably complicated illnesses than you can shake a stick at.

Nowhere do you tell us your exact ages. I get that there is a 24 year difference, but that means little. You could be 30 and he could be 54. That information here would be very helpful.

To my mind now you and your husband need to be in PERFECT/OPEN/HONEST communication. While you are suffering as caregiver, he is suffering much more bearing these illnesses. Has he at any time expressed a wanting to exit a life that is increasingly more difficult by the day? Has he acknowledged your caregiving is more than you should have to do for perhaps the next several decades (again, only you know the ages and only the docs know the prognoses.

I can only say that honesty and talking about this is crucial at this time. If you need to hire on a social worker to help you do that, to bring up the very difficult questions, then do consider doing that.

Again, this is unimaginably hard. I cannot even know if you are continuing to work and if you are stretched beyond all limits in terms of finances/insurance, and etc.

I am so dreadfully sorry. Your plate is honestly beyond full to overflowing.
But unless I am missing something here this is not currently a hospice situation. Not that this couldn't turn on a dime any day.
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lealonnie1 Feb 5, 2024
The ops dh is 61. "A little background, Mark smoked for 40+ years and quit 7 years ago, but not doubt it has done a number on his body at only 61."
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With all your husband has going on it certainly couldn't hurt to have hospice do an evaluation to see if he qualifies for their care. Otherwise he may just qualify for their Palliative care which isn't much, but they will keep an eye on him until he's ready for hospice.
And you can call the hospice agency yourself and they will come out to do the evaluation.
Just do your homework as not all hospice agencies are created equal.
Wishing you the very best.
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