Do I need to get real with myself and face the music my husband is probably going to need hospice?
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?
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.
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.
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.
🙏
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
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.
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.
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?)
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.
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.
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.
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.
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
"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.
I'm sorry you're both going thru such health issues. God bless and best of luck.
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.
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.