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My 86 y.o. dad's decline has picked up substantially in just the last two months. I had to take him to the ER over the weekend because he was extremely lethargic, his toes looked purple (which they were not the previous day), he was confused, and his back pain seemed worse although he down played it. Blood work, CT scan, x-ray done.
Today I finally got the whole story. The doctor asked me what I knew about his medical history and I told him, KF, CHF, vascular dementia. The doctor said it's much worse than that. Dad has two spinal slipped discs, poor bone integrity, liver failure and cancer of the lungs, liver, and stomach. He asked what did I want for dad and I said I want him to be comfortable. I don't feel I could continue to care for him alone at home so I said hospice without any hesitation.
The doctor was happy to hear that and told me the options were 1. in-home hospice, 2. hospice in a facility (he mentioned this could be more difficult to get into), and lastly 3. a skilled nursing facility where hospice would go to him.
All of this is happening so suddenly. I just wanted to hear from others their experiences with the three options suggested to me by the doctor. I know dad wants to be home and I would like to honor his wishes but I want him to have the best care and minimal suffering. The doctor told me he may pass away while still in the ICU.
Forgive me for the long post.

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I'm so sorry. My mom died while I was holding her hand, with no medical professionals in attendance. It was very difficult to watch, but I do not believe she was suffering. I'm guessing they are giving your dad comfort medications so he is not suffering, despite the sounds.
Don't be surprised if you go from numb one minute, to hysterical the next. Just feel what you are feeling. It's very difficult. My heart is with you.
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Zs60607 Mar 14, 2024
Thank you. Yes dad is on meds to keep him comfortable now. He's not speaking but I'm not seeing signs of pain in his face anymore.
I do break down and I try hard to keep my composure. It feels like a dream.
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Zs, prayers sent for you during this difficult time.

May your dad's passing be gentle on both of you.

May The Lord give you renewed strength day to day.

((((((Hugs))))))
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Zs60607 Mar 14, 2024
Thank you Isthisrealyreal.
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Zz
How are you doing? Thinking of you. Big hugs.
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Zs60607 Mar 14, 2024
97yroldmom, I'm hanging in there. Thanks for your support. I had to make funeral arrangements yesterday. It was tough but somehow knowing I have that arrangement done has lifted a bit of the weight off of my shoulders.
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*UPDATE*
I want to thank everyone again for your advice and support.

My dad was transfered from the ICU to hospice Tuesday evening. I went to see him and provided his DNR/ Health care proxy.

He has been rejecting food and drink while in ICU, (the last "meal" he had was Saturday morning before the trip to the ICU which was a few pieces of a tangerine and a few sips of ensure). His eyes stay closed for the most part, his speech is jibberish, and the gurgling sounds have begun. I can't even describe how I feel right now.
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Oedgar23 Mar 14, 2024
I’m so sorry.
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I was fortunate enough to have my dad live his last few weeks at an in-patient hospice. This worked well for me because he was often not responsive or when responsive almost in a dream-like state. The same in-facility care did not work as well for a friend's parent, who was lucid most of the time until his very final days. Right now, my cousin is dealing with in-home hospice for her MIL and there seems to be confusion regarding the specifics of how to care for the patient.
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Zs60607 Mar 13, 2024
I definitely didn't realize the limitations on in-home hospice.
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I did home hospice for my Mom and it worked great. However, the family is the MAIN caregiver at home. Many people seem to think that it will be a total care situation.
There is assistance but no real break.
We set it up so she had aides for bathing twice a week. Nurse visits twice a week... So she had visitors 4 days a week. Pain meds for her.
24 hour call assistance if there were any medical issues. I use that 2 times.
A volunteer who would sit with her once a month for me to escape. lol
Visit from clergy every 3 weeks or so.
And a very easy transfer to the funeral home after her death.
My Mom and Dad both died at home, loved and cared for.
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Zs60607 Mar 13, 2024
I admire your courage to take on in-home hospice.
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I am one of the recent people alluded to here. I supported mom going to her own home for hospice. I thought her time was short but she lived over 6 months. She died 8 days ago and I feel like I am on the brink of an emotional and physical collapse. I ended up with a M-F live in caregiver, and it was still extremely overwhelming and my hospice agency helped very little.

If I had it to do over I would want her to go to a care home (which don't exist in my area), or in a situation as grave as you are describing, maybe have your LO stay in the hospital. Friends have told me they received good hospice care in the hospital.

My mom didn't have cancer. Her friend had cancer that spread, and she was in hospice for literally one day. It's so hard to know what to do when we can't predict how long someone has to live.
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Zs60607 Mar 13, 2024
I am very sorry for your loss. Thank you for your response.
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I can only tell you that Hospice in home care, despite getting many millions from Medicare, now is the favored investment for Hedge Funds because they are so profitable. They take in tons of money and give little in return. I say this with great sadness as I was an RN all my career and Hospice as it was once was such a godsend for any in medical care. Their mission was wonderful and they once provided tremendous support.

The truth here is that your father may not pass quickly.
And with him in home the amount of help you will get is:
An aid to assist with bathing either one or two times a week.
An RN visit that will be very brief once a week. She/he will take BP, listen to complaints, leave.
A call from a clergy person.
A call from a social worker.
Medications such as morphine.

That's about it.
I recommend trying hard for in facility hospice.
Second choice SNF if that can be covered, with hospice going in to them.

I am so sorry for what you are facing and so glad you are using hospice, such as it is. I just want you to understand what has/is happened/happening to Hospice.
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Zs60607 Mar 13, 2024
Thank you, I really appreciate your suggestion.
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Any of the options are good choices.
It is ultimately up to you.
Can you care for him at home? You will need to get caregivers as it is difficult for 1 person to care for someone with no help at all.
Hospice will provide all the supplies and equipment you need. They will teach and support you in how to provide the best care.
Hospice in a facility or an In Patient Hospice Unit are also great choices Insurance will cover some but not all costs so it will depend on his insurance and his assets.

If he is nearing end of life as you indicate I would take him home so he is more comfortable. It does not sound like you would be caring for him for 6 to 12 months.
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Zs60607 Mar 13, 2024
Thanks for your advice. I really think I wouldn't be able to handle care at home, especially with him being bedridden now. Even with occasional help I don't think I could handle it.
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Like others have said, hospice seems the correct choice. If he can’t go to a hospice house, consider looking at small assisted living homes. My dad went to one with 13 beds and a homey environment. The hospice company we used was very familiar with this home, and dads nurse said she’d put her own mother in there with hospice brought in. The cost was about 5,000 per month, a lot less than a LTC.
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Zs60607 Mar 13, 2024
Thank you!
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My dad chose home hospice. He agreed to aides and then threw a tantrum when they came. My sister put my mom on benzos so she could sleep, and then she was sleepless so my other sister and me came over to be sleepless too.

After about a week, my ys was making arrangements to transfer him to a hospice that had a home attached, but he died a few days later.

This was only 11 days.
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Zs60607 Mar 13, 2024
Thank you very much.
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Zzs, I'm so sorry you're going through this.

We've had two posters here in the past few months who were told that their LO was imminently dying who then survived for several months or more. I have no reason to doubt the doctor's prognosis, just be aware that sometimes, taking someone home turns into several month's of nonstop caregiving.

A hospice house sounds like the best possible choice.
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I am so sorry that you are losing your dad. May The Lord give you wisdom, strength, guidance and peace during this difficult time.

May HE guide your decision to whatever is best for you and your dad.

Great big warm hug!
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Zs60607 Mar 12, 2024
Thank you!
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If hospice believes that your dad will be dying in the next week, they can transfer him to their hospice home where he will receive 24/7 excellent care and the homes are always beautiful and peaceful.
And if your dad dies within the week Medicare will cover all costs 100%. If he doesn't die within the week, he can still stay there, but he will have to pay out of pocket to stay there. The cost is comparable to a nursing facility, but the care will be MUCH better.
That would be my recommendation.

I had in-home hospice for my late husband for the last 22 months of his life and I still had to do 99% of his care, and it was not peaceful whatsoever.

I wish you peace on this final journey with your dad.
God bless you.
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Zs60607 Mar 12, 2024
Thank you for mentioning what your experience was with in-home hospice.
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I’m so sorry for all of it. My dad chose hospice in his home. He lasted about 7 weeks. The hospice provider was great but it still left most of the care to me with minimal help from my siblings and great help from dad’s usual helper. The last week I hired additional CNA’s. If it had gone on much longer it would have been unsustainable as it was incredibly physically and emotionally exhausting. His city has a wonderful inpatient hospice facility that we would have used if we’d known to sign up at the start with the hospice company that owned it. Choose your hospice provider carefully, we didn’t know the differences and just went with what the hospital social worker recommended. Nothing wrong with who we used, but it cut off the possibility of the hospice house. I’d strongly urge you not to take this on in a home setting, the list of issues is far too much. Again, I’m sorry you’re experiencing this and wish both of you peace
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Zs60607 Mar 12, 2024
Thank you so much. It would all fall on me with in-home hospice and he is bedridden now.
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Zs,
It seems your father’s death is imminent. I am sorry. You know how things are at home, if you have trouble with caring for dad or if he is compliant.Unless you have family or help you can call in, you will most likely be alone.
The inpatient hospice provides the most help and the rooms are usually large and you will also be comfortable. The NH rooms are small and probably like the rehab he was in recently. You will have that staff and the hospice staff coming in and the ability to speak with the hospice nurse as needed.
I am sorry your dad is in such poor health. Good that the doctor explained all his issues to you. Dad is lucky to have you care for him. Let us know how it is going. We are here for you.
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Zs60607 Mar 12, 2024
Thank you so much!
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I had hospice for both of my parents while they were living in Assisted Living for dad, and Memory Care for mom. So hospice provided an extra layer of care in addition to the care they were already getting.

If you bring dad home with hospice, he'll get very little care from them and 98% of the hands on work will be on you. An RN comes once a week, or more towards the end, to check vitals and adjust meds which YOU administer, and a CNA comes to bathe dad 2x a week. A chaplain and social worker stop by once in awhile as well.

I'm so sorry dad's gotten such a serious diagnosis. May God help you thru this difficult time, my friend, and bring you both peace.
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Zs60607 Mar 12, 2024
You have confirmed my thoughts about hospice at home. The week following his return from rehab was exhausting so I could only imagine what it would be like now and watching him dying. Thank you!
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