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How did you approach the subject? What was their reaction?


Dad is having trouble pulling out of sleep in the morning. BP is high one day, low the next. Sometimes he has trouble catching his breath. Other times he is fine. Dad will be 99 in November, uses a Spyrt to stand, and is wheelchair bound.


The Doctor feels Hospice would be good to bring in. Since they can monitor dad and bring in oxygen or anything he may need. Plus he would not have to worry about having to go to the hospital.

Hospice is not used today as once it was. The doctors kind of "fudge" that "six months left to live" guess now, and use hospice as a way to boost up care needs. Do know that at the same time this is true, Hospice is now moving more and more certainly into the for profit area of the military industrial complex and it offers much less individualized care, and only a help with bathing a few times a week, and the visit from an RN infrequently unless there is need for medication and it has moved definitely into "end of life care". I would explain to Dad that the doctor suggesting this doesn't really mean that he is thinking Dad has a certain limited amount of time to live, but more to get help for him. I would acknowledge that at his age, it MAY happen any day, but of course that is true of ALL of us on any given day.
If Dad doesn't want this extra care and help, if he fears that you are signed some sort of death warrant, I would not push this matter, and I would give up on the Hospice for help idea. Because quite honestly hospice should be a decision made by the patient him or herself.
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My mom was on hospice before she died. They were clear that if she "got better" the hospice could be revoked. She was on hospice for almost a year after her abdominal surgery, removing a large portion of her gut, and for a while she got somewhat better and I thought we maybe should revoke it, but my nurse daughter said, keep it for the extra nursing care for my piece of mind. The only reason to revoke is if gram is going to go to the hospital, but we can decide that at the time. She got covid and we thought she may need the hospital, but gram didn't want to go. She said if Jesus wants me, I'm ready. We were as prepared as you ever are for her death, and because she was on hospice, we were allowed to visit her, sit with her and hold her hand even though she had covid. She recovered from covid and again we considered cancelling the hospice, but right after that she had a stroke and went downhill quickly after that. While she was on hospice we had additional nursing care which really helped me. I'm an only child and was worn out. Plus, the extra nursing care kept a close watch on all of the medical issues. She did not want to go back to the hospital for any more treatments, and hospice allows that. The hospice nurses made her last hours comfortable.
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Explain that hospice and palliative care will increase his comfort. Explain that nurses will come in to assess and get him whatever he needs into the home - instead of going to the doctor's office or hospital.
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The doctor talked directly with dad and dad made the decision.
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We had hospice for my Mom. Dr recommended two different companies, we contacted the one she provided as best.

There were various degrees of employees. Mom was very polite to all. She was 92. I was staying with her along with my husband, who has been on disability for 18 yrs after a building collapsed on him.

A Nurse brought breathing treatments to the house, ( use the term loosely because the machine pulls oxygen out of the house air (full of mold and spores after the 2016 flood in Louisiana) but the nurse refused to give the breathing treatment. She gave the items to my sisters to provide the treatments with no training.

I had Mom's financial POA but not her medical POA. It can be a nightmare for him and you, if the employees are not courteous to the person needing the care.

I pray you will get a hospice group that really care and has very well maintain equipment.
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KaleyBug Aug 18, 2022
When it finally happens it will be the same group we used for mom. I will try and get the same nurse too if possible.
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My husband brought up Hospice for himself so that I "would have someone to talk to" about his care. He knew he had terminal cancer but was not willing to tell any friends or family, so he suggested Hospice himself as someone to help ME with his care.
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Do we need to say it's "hospice"? Not to try to hide anything but what if LO hasn't talked about dying yet? Just wondering if sometimes we share things that just don't need to be shared--at least not yet.
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KaleyBug Aug 18, 2022
Actually if we don’t someone coming in from hospice will mention that is where they are from sooner or later.
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We told dad that it was his doctor’s idea, which it was, to begin hospice care, and it was his to accept or decline. He was of sound mind and we gave him time to consider the option. In a day or two, he decided to accept home hospice care. He was so very tired of all the hospital trips, the treatments that weren’t really helping, and feeling bad all the time. Hospice eased his concerns and brought him peace. I hope you’ll find the same
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KaleyBug Aug 12, 2022
Thanks I am going to see if he brings it up over the next few days.
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I really appreciate hearing everyone’s experience and answers. Thanks for being here for me.
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Clairesmum Aug 20, 2022
many people don't know that a patient can choose to revoke their hospice benefit under Medicare A, and return to accessing all their Medicare benefits right away. The hospice notifies the MD who made the referral that the patient is revoking the benefit, is no longer receiving hospice care. Family should also call that MD to arrange a visit, and be sure electronic record shows the change.
The fact that hospice provides weekly or biweekly nurse assessments, helps pay for items needed at home, arranges to have equipment and medications and supplies delivered to the home help relieve a good portion of caregiver burden. They can also give you guidance about what to expect, although every dying process is a little different. They can help patient and family have a chance to ask questions, talk about what is on their mind, etc.
Focus of care is on comfort, not on knowing his exact platelet count or level of hydration. At 99, his body has already slowed down a lot....ease of body, mind, and spirit are key.
You can talk to the hospice in advance, and get some information.
Also, you can interview more than one hospice company. Some are businesses, some are part of a health system such as Kaiser or Sutter, and some are non profits. Be wary of anyone who wants to sign him up right away by faxing papers for you to sign....a rushed 'sale' is always a bad idea. You can change hospices if the first one doesn't work out.
Good luck to you and your dad.
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I alone made the decision to bring Hospice in. My Husband would not have understood, and since I was the one caring for him I felt that I did not need the input from other members of the family (namely his children, my wonderful s-kids)
Hospice was able to provide equipment, support mentally, emotionally and the education that I needed in order to safely care for him at home. One of the absolute best decisions I made!
With Hospice coming into the home you get support and supplies and equipment that you need. And you get at least 2 professionals that come 2 to 3 times a week that will keep an eye on things and may notice potential problems that you may over look.
If LO is in a facility Independent Living, Assisted Living, Memory Care or Skilled Nursing having Hospice come in is just more eyes on your LO to make sure things are OK. (Facility CNA's will not duplicate the work that the Hospice CNA's do but since the Hospice CNA is seeing your LO and showering your LO and not 10, 12 or more other residents I think the attention is more)
Not having to transport to the hospital is a biggie.
If treatment options are limited why put someone through the discomfort of being taken to the hospital to wait around for 3, 4 or many more hours just to be sent home. That stresses everyone for no reason.
(Hospice will/can order a transport to the hospital under certain conditions but it has to be approved. And generally not for the condition that is life limiting)

Suggestion...
Call Hospice. Get dad evaluated. Have Hospice come in and begin care. If you, your dad or other family members are not happy with the care discontinue Hospice. You have every right to change Care providers or even change Hospice companies if that is what you would like to do.
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KaleyBug Aug 11, 2022
Dad is still in his home. We moved an adjustable bed onto the main floor. The kitchen dinning and Family room are in one area. Late 60’s house. The dinning area has his desk and a puzzle table then the beds in the family area down a small one step ramp. Hoping to address it again in a day or two. My dads a smart man so I know he is tossing around what I mentioned and believe he will bring it up himself.
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This must be so hard for you and dad. Especially since dad has all his mental faculties but his body just cant keep up. I would be honest with dad about hospice. I see from the comments you made below that he is a little resistant but I think he will be ok with it once they get on board to help. It must be scary to try and wake up feeling like you can't breathe.
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KaleyBug Aug 11, 2022
I believe you are right and yes It was scary for him. I believe he thinks these two instances won’t happen again. But I believe we are on what I call the next step in his slow decline. I think it was Flonase is helping some with the breathing. If it happens again tomorrow or the next day I may just bring up in the conversation “you know dad if we had Hospice on board, we would have oxygen here I good put on you to help you in the morning, then remove once your levels steady”. I think with my dad it may just take a few situations that I can without being sarcastic mention pluses for Hospice to him.
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I never used the word hospice… it was the new care program I found… I told hospice not to use the word… no need to cause anxiety….
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KaleyBug Aug 11, 2022
I found things were said with my mom in hearing distance enough that she knew but never let me know she knew. My mom was an English WWII war bride. She never complained, even up to the end. Covid had just started so we only had the nurse and baths for mom. Everything else was on hold. But that was more then enough. We had a great nurse.
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If you don’t mention it’s hospice, things might be easier, it seems kinder to refer to them as a special medical team that is helping. Your dad probably has less than six months left. Follow the doctor’s suggestions and let things take their course without unnecessarily upsetting dad. And you can remove him from hospice care any time - but you won’t want to. It’s the help you and dad need now. So accept it.
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KaleyBug Aug 11, 2022
Unfortunately you do, my mom was on hospice after a stoke. We didn’t tell her the people coming in were hospice, but do mention they are with hospice to the patients. They even discussed over the phone with the lead my mom was transitioning but was comfortable and did not need meds in front of her.

My dad understands everything, still writes checks, does his taxes, uses the computer daily, even logs onto Netflix.

The problem is two out of the last three days he had trouble pulling himself out of sleep in the morning and BP is inconsistent from day to day.
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My mother had a full meltdown when I brought up hospice, accusing me of thinking she was dying, and how stupid that was, with her being 94 and having advanced dementia, chf, pulmonary hypertension, neuropathy, afib, and about 10 other issues too numerous to mention. Even after I explained everything to her, she still had a fit about hospice, so I said fine, suffer all you'd like mom because the doctor won't give you painkillers, hospice will.

About 6 months later, hospice was brought in and mom's dementia was too advanced for her to realize what was going on. So she had no objection, especially to the meds she was given that finally helped relieve her pain and anxiety, thank God.

When the subject was broached with my father back in 2015, he reacted in a resigned manner because he had a terminal brain tumor. He wound up passing 19 days after hospice came on board.

Wishing you the best of luck with a difficult situation
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KaleyBug Aug 11, 2022
I mentioned today that the doctor thought even though he was not in anyway dying anytime soon, she thought Hospice would be good for him to have a weekly checkin with a nurse and I would have someone to call when I was concerned about BP or if he needed oxygen. I also said it would prevent me from having to call 911, knowing that he did not want to go to a hospital if his BP drops again or he is having trouble pulling out of sleep.

She agreed with me not waking dad as it could startle him.

Like the other day he was trying to wake and felt like he was dying and could not get his breath and could not wake. Yet he was breathing fine.

Then today, he was trying to get up, took my hand (remembers grabbing my hand) then sat on the edge of the bed fast asleep. I had a wedge and pillows supporting him until he pulled himself awake. I place a hospital table in front of him, incase he slumped forward. BP was high, then 3 mins later normal.

Yesterday BP was 90/54.

Dads reaction was it didn’t take me long to wake up. I said dad you sat on the side the bed for an hour asleep. Plus you were semi asleep as I helped you to a sitting position.

in the end I told him it was his choice but remember how nice everyone was when mom had a nurse coming in and how I could call her with questions.

What I did not say but was thinking lol. If like mom and the bather comes in at 7:00am I can sleep in or relax with breakfast. Moms girl was great, she said just unlock the door, I will come in wash your mom, dress her and get her in her chair and then I will text you. It was so nice.
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Do you need to say it’s Hospice and explain the details? If Dad doesn’t already know about the 6 month life expectation, there is no need to tell him and at the same time say that it doesn’t really apply – at 99 he will probably think that’s gobbledegook. It can be just a different care program that will help you both.

The real difference with Hospice is comfort-only, rather than curative treatment. Is Dad getting curative treatment at the moment? If he isn’t, then the only change is likely to be the home care. If he is getting curative treatment, would he notice and query a change in medication to comfort-only? Sometimes least said, soonest mended.
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lealonnie1 Aug 11, 2022
Even if you don't tell the person hospice is on board, they themselves announce their arrival....hi Mrs Jones, I'm the CNA with Brighton Hospice here to give you a bath today. No matter how many times you ask them not to do that, it winds up happening and the cats out of the bag. The patient is better off being told honestly from the get go.
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The doctor in the ER brought it up when I had my dad in there for a weekly paracentesis. She asked both of us WHY we were continuing to do this when he would be so much more comfortable being treated at home? Fortunately, my dad had accepted the inevitable and was on board. When we left that ER, I had a box of comfort medications in hand along with a hospice referral, and we never went back.

If you think he'd be upset about bringing up hospice, let him know that he's not required to die within a specific time frame. I have a relative who was on hospice for a year, then "graduated" off it, much to his dismay. He liked the personal treatment, not having to go to doctors' appointments, and especially not worrying about who would stay with his wife, who has Alzheimer's.

The great thing about hospice is that suddenly you've returned to the days when folks got a house call from the doctor. THEY come to you, and it's wonderful. Granted, you see the doctor about once when you first sign up, but honestly, nurses are better than doctors anyway in my opinion, and they come every few days to check in on you.

As for me, I felt an immense load off my shoulders once we had hospice on board. With my dad, he was at home, I was staying with him and my mom caring for both, and I suddenly had a support system backing me up, too. When it came time to put my mom on hospice care, she had no idea (dementia), but I had decided that we weren't going back to the hospital any longer. She'd had some bad experiences with delirium when she was taken out of her familiar surroundings at her memory care, and I just decided we were done. I was so glad I made that decision, because she continued to receive the great care she always had at her MC, but she also had an extra layer of care with the hospice nurse. That woman became a good friend during my mom's time on hospice, and I don't know if I could have made it through a second time without her support.
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KaleyBug Aug 11, 2022
My thoughts were like your experience, I would be relieved to have a weekly nurse check up, maybe some veteran visits. The home hospice we use is in partnership with veteran volunteers. Dad fully understands he could cancel at anytime. Mainly I wanted to hear others experiences. For today I will not mention it again and see what tomorrow brings and if he brings it up. The minister and my brother think dads perfect for it.
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