Should I talk with hospice? - AgingCare.com

Should I talk with hospice?

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I had a very bad experience with hospice last year. They were pushy, rude, and told me lies. Totally threw me for a loop. When I got my psychological balance back, I asked a lot of questions of them...and they were not forth coming with me.

I say all that because I am starting to think Mom needs more than I can give her.

She is not eating enough to keep a bird alive. She is losing a lot of weight. Is barely awake for than 4 hours a day. Seems to have no energy. Walking down the hall is so exhausting for her that she needs to sit on her walker mid way...then falls asleep sitting there!
She cannot stand up without help. Her swallowing is becoming very difficult. Taking medication has graduated from pills in apple sauce...to crushed pills in apple sauce. Now, even that seems to cause her to cough and choke.

This has been going on for the last few weeks.

She has been tested for everything under the sun. If there is a test they haven't run on her...it's cause they haven't invented it yet. Nothing has turned up to explain any of this. Not UTI, no infections of any sort. Blood work came back..everything find. Thyroid test came back normal. Normal heart rate, normal BP, blood oxygen good. Everything looks good from a medical point....so...no explaination.

I am thinking all that is left for me is to keep her comfortable. But, do I even know what that requires?

What help does hospice actually offer? Anything mom might benefit from? I am sure Mom would be upset if she learned I brought hospice in....will they come in and NOT tell her?

Of course, if no good for her would come of it...then I won't pursue it.

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Our hospice for Daddy was wonderful. They educated us all about what to do, how to treat daddy, what to offer him, what to expect as his life began to end. They were compassionate, kind and amazing. I don't know what company(?) they were with, but they made daddy's passing a sweet, gentle, beautiful experience.
I'm sorry you had a bad experience before. I'm sure that the care can differ from co to co, but for the most part, every hospice group I've known has been amazing.
It does sound like your mom id getting ready to let go. Hospice provided mother with the emotional support she needed to know she was choosing the right thing for daddy. AND for those of us who spelled her off, it helped us to know what to do to help him.
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Freqflier, the three strong binder must just have been from you hospice. All I got was a business card ;-)
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No, my mom doesn't have any other health issues, just the Alzheimer's. She is double incontinent, can't walk or stand, has fluent aphasia, and has to be hand fed. She has some agitation that we control with a small dose of Seroquel. They said they automatically send it. If you read up on it, morphine given with Ativan is sometimes called the death cocktail. As I said, I love our regular nurse and her philosophy is similar to ours...we just want her remaining days to be comfortable...we are not necessarily interested in prolonging life, but I am also not wanting to rush the end of life either. Some of the other nurses would be great for people with a different perspective. I don't feel one is right and one wrong...I just want ours honored.
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Grammy does your mom have any kind of breathing issue? My mom just had hospice and got morphine. She also had no pain, but they told me that the morphine eased her breathing when she felt short of breath. It shuts down the part of the brain that says "I'm not getting enough air" so it's a comfort.

My experience with hospice was a mixed bag. Very poor communication on their part. I said I wanted to be informed before anyone went to see mom. So the next day, the social worker called me from mom's (she was in independent living and had people looking in on her to check her, so her door was unlocked). I didn't know she was coming. They also sent a minister even though I said mom wasn't religious. I found his card on her walker the next time I went. I was NOT happy about either.

The nurse they sent was great. She was able to keep me informed about mom's physical condition and successfully predicted the day she would pass, which meant I was there. The CNA they sent gave her two in-bed baths and did a good job, but didn't explain her schedule to me, so I didn't get clean towels back fast enough.

After she passed away, they came in (again without my knowledge or permission) to get the durable medical equipment) they had delivered. I had been told I would be notified when they came, so I could meet them. I wasn't. I wouldn't use this particular hospice again because of the poor communication issues. The nurse was very helpful though, explaining what was going on with mom's body and the death process.

I'm sorry you're going through this. I'd call in your hospice based on what you said and just be very firm in how you want things to do. Feel free to message me with questions.
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Both my parents had Hospice for their final days. I got to meet more of the Hospice people for my Mom as she was on Hospice for almost a month, and I would visit Mom more during that time, she was in long-term-care. Everyone was so soft spoken and comforting. I felt like they were extra eyes and ears for what was going on.

And the 3-ring binder was so very helpful, with telephone numbers and information on how the Hospice group works... comfort management... medications... nutritional information... personal care... infection control... preparing for end of life... support care... your rights and responsibilities... what to expect on the final days.

Later my Dad was put onto Hospice, but it was only a week before he passed. Hospice ordered a hospital bed for him as he was living in Assisted Living/Memory Care.... also ordered oxygen tank and some other items.

Once my parents passed, Hospice called the funeral home for each case, which saved me the emotional trauma of calling them.
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It depends on what you are wanting. The mission of hospice is to provide comfort as a person is dying. The services are different state to state and hospice to hospice. Where I live, hospice provides medicine ( but not the ones mom was on)... They delivered 2 the first day, morphine for pain (my mom has no pain) and Ativan for agitation ( we use Seroquel because it is safer for a senior with Alzheimer's). They also send a CNA twice a week to bathe mom. I help as mom gets agitated when I don't. And a nurse comes once a week to check her vitals. I like our assigned nurse but have not really liked a couple of the ones that have filled in. If you know what you want for your loved one and are strong enough to hold firm on that, then it is fine. It is nice to have the help with bathing, but other than that, I don't really feel I get much from having hospice. Maybe that will change closer to the end.
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I had a bad experience with hospice as well. This one lady I have never even met before. But there is a whole hospice group that is involved. So i cant really blame hospice for my one bad experience. Only the one lady that was responsible. When my bad experience happened I told another lady in the care group and they took this matter very seriously and did an investigation. This one lady not only made me feel like hospice was no help but also made the hospice team look bad as well. Everyone else from the care group felt that they let me down and tried very hard to help.
But anyways about your moms comfort....that is there main thing, to make sure your loved one doesnt have any pain. For example my mom didnt want any feeding tubes and didnt want to be resuscitated for the simple fact she didnt want to be a vegetable. I had to obey her wishes. The only way was to make her comfortable. The last days of your loved one may be hard to see because you might think they are in pain but its like they are going into a deep sleep. A peaceful sleep. No nightmares. Just peace. Which will be hard at first but in the end all you want for your loved one is to go at peace. Hospice can help in a way that will make your mom comfortable. They provide equipment that make it easier or medications. If you have in home care though really its all up to you. They cant be at the house 24/7. All i can say is just be there for your mom as much as you can be. Thats all that matters to her right now. Dont think if your doing things right or wrong. Your doing everything right just by being there for her.
Im so sorry for what your going through. I know its hard to make decisions for your loved one. You know her best. Its better to try than not try at all.
Hang in there and good luck!
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Also they did not tell my grandpa but he was sleeping most of the time and had pretty significant dementia. When the lady came in for the initial evaluation she just said, "My name is ... and I'm here to talk with you and ask a few questions." They were very discreet and also used quiet voices when addressing us when we were in the room with him.
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Katiekate, grandpa got hospice at the nursing home so we didn't have experience with what services they provide in-home. They did not do anything regarding eating as far as I know. They did keep on the nursing home to make sure they were keeping him hydrated as long as he would accept water. But they definitely did no hands-on feeding and it was all very laissez-faire - just kind of taking him where he was at and assuming there was no improvement to be made. (We felt the same so we could accept that, but I think if we had any doubts this would have been harder to accept.)

The material benefits were that they provided for comfort measures like a special mattress, a gerichair, and compression booties, and of course pain meds (not a ton for him but some.)

Some of the most helpful things for our family: they would stop in periodically to ascertain his pain level. The ladies knew what signs to look for (things we would not have known to pay attention to.)

The chaplain was a huge help to us too. She stopped by and said a prayer for him a couple times and was also really understanding.

And they could tell us what to expect with his decline -- what certain signs meant and what might happen next. For our family, we knew where things were heading and that they were heading there fast, and we wanted to make sure he was not in distress. Once we signed onto it, the nursing home staff were much more open with us. And actually it was the NH nurses who were there at the end and who pointed out the physical signs that he was leaving us.

Then when grandpa passed, the nurse at the NH called hospice. They came and filled out his paperwork and contacted the place to come pick up his self (I have a hard time talking about this part, I'm sorry!) and transport it to the next place for them to handle that part of it.

To me the benefits were the streamlining of his comfort (and having someone to call as things changed) , and communication about what to expect/look for, but that was something our family was really anxious about. I think in your position I might have a hard time signing onto it too since so much of the process is just communication. I hope someone else can offer guidance about in-home hospice care.

Also I am so sorry your mom isn't doing well. Has her doctor talked with you about palliative care being an option? It might get you some of the same help but with different staff.
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After some reasearch, I discover there is one hospice in this entire area. Have to go all the way to Denver (5 hour drive) or to Salt Lake (6 hour drive) to find the nearest next one!

So..before I go down this road. What can they offer? Do they have the knowledge to get Mom to eat or drink?

Mom doesn't seem to be in any pain. Just always sleeping and no energy. Might be because of lack of food. Just don't know where else to go to seek answers
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