Should I talk with hospice?
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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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.
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!
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.
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.
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.
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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