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?
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.
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.
"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.
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.
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.
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.
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.
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
I'm sorry you're both going thru such health issues. God bless and best of luck.
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