Follow
Share

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?

This question has been closed for answers. Ask a New Question.
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.
Helpful Answer (8)
Report

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.
Helpful Answer (8)
Report

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.
Helpful Answer (7)
Report
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.
(4)
Report
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.
Helpful Answer (7)
Report
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.
(0)
Report
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.
Helpful Answer (6)
Report
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.
(5)
Report
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.
Helpful Answer (6)
Report

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.
Helpful Answer (5)
Report

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.
Helpful Answer (5)
Report
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."
(5)
Report
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
Helpful Answer (5)
Report

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.
Helpful Answer (4)
Report

See All Answers
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter