Hospice isn’t helping much. I expected more.
This post is in my discussion of home care not working. But I feel like it’s buried.
After 6 months, mom seems to be going into a decline. I spent yesterday with her and she was breathless to the point of barely being able to eat all day. Having a BM on the commode was an absolute ordeal. It took her an hour, and then another half hour to get her back into bed. After that her respiration rate was 32.
I do have a call into hospice, but I feel they are no help. As Alva has said many times, they come in for their weekly visits (maybe 2 nurse visits for less than an an hour, 1 CNA visit for a bed bath, and alternating social worker or chaplain visits, down to about once every 2-3 weeks now.)
Sadly, I think mom thinks they are going to call the calvary when she gets to the point where she really can't breathe. But reading other websites, I feel like we will be lucky if they even show up for the very end. All they have to offer her (besides the hospital bed, commode and O2 machine) is morphine and benzos. And mom continues to take LESS than the minimum prescribed doses because she doesn't want to sleep.
The doctor, the nurse and I have explained over and over that the sleeping is due to the progression of her disease, not the meds. She is literally on subclinical doses after 6 months. (Like 0.25mg clonazepam). Yet she fights to stay awake, says "I can't breathe" several times an hour, and when she uses the commode and her O2 dips into the low 80s she cries "help me" at which point I just about beg her to take the full morphine dose. But she wont. She says we are trying to put her to sleep.
She is now accepting of the fact that she is dying. But she thinks hospice is going to swoop in and save the day. The only thing they are going to do is continue to raise he medication doses to make her comfortable, but she won't take them. Hospice says we can't force her to take them. But it's agonizing as a family member.
I want THEM to tell her firmly that her only option, if she doesn’t want to feel like she’s gasping for breath all day, is to take the meds as prescribed. They act like they’re afraid of her.
I expected more from hospice. They said they provided "wrap around care" for both the patient and the family. I told the chaplain much of the above, and he said that's "out of his wheelhouse". So I guess the idea of him providing ME counseling and comfort is out.
Also, my efforts to find a hospice home, even in a nearby state, for end of life have been fruitless.
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My husband had stopped by and I stepped away from mom for a few minutes to talk to him. When I got back mom was staring wide eyed at the ceiling with her mouth open, breathing. I soon realized what I was witnessing. I texted my husband to come back.
I held mom’s hand and told her I didn’t know if she was seeing dad or grandma or someone else, but it was ok for her to go. That we would be ok and that we would take care of each other and take care of my brother. My husband walked in and had his hand on my shoulder and my daughter was with him and said goodbye too.
She didn’t seem to be suffering. Her respirations got slower and slower until they stopped. It was as good as it could have been. I do feel bad about being angry and resentful during much of this journey, which I’m sure mom sensed. But I’m not going to beat myself up. I’m only human.
Praise The Lord that her suffering is over.
May The Lord give you strength, peace and comfort during this new season in life.
That is why I often tell folks on here if they're bringing hospice on board for in home help, they will still have to do 99% of the hands on care as they only send a nurse out once a week to start, and aides to come bathe your loved one twice a week. The rest is on you or whoever is caring for the patient.
Now of course if you need a nurse to come out more for an issue you can call their 24/7 number and they will come out.
You also have the choice of hiring a different hospice agency in your area if you're really unhappy with the one your mom has now, as not all hospice agencies are created equal.
It's been my experience that folks that have hospice care in any kind of facility are often much more pleased than those that opt to have in home hospice care.
And I also know that you have to stay on top of them constantly to make sure that they're doing what they're supposed to be doing. So don't hesitate to call them any time with any question/concern you may have.
And I hope that they will be there for your mom and you at the end as that is what they're supposed to do if you need them. They're actually supposed to provide 24 hour round the clock care if you request it, as your mom nears the end.
I'm also surprised that none of your local hospice agencies have a hospice home that your mom can go to if need be at the end. That doesn't make much sense, as most have one or access to one. You may need to double check that.
Wishing you well as you take this final journey with your mom.
I was so burned out, angry and resentful. Objectively, as if I were looking at my best friend in the same position, I would say of course- you were days away from a total breakdown after working 5 days a week and spending every weekend caring for mom, for over 6 months. Not counting when I was caring for her full time at the beginning. And the 4 years leading up to this.
I feel guilty for things I’ve said about her on here, but the truth was she was often selfish and demanding. My family gave up their entire holiday season from Thanksgiving through New Years so we could care for her and no one (but me) complained. Then I think of how helpless and frail she was at the end, how heartbreaking it was to watch her die, and I lose it.
I also didn’t intend for my 20 y/o daughter to witness it. She’s having a hard time, and left last night to go back to college. And my son, who has major problems of his own that I have mostly ignored over the past 6 months, is struggling too.
Also, mom’s Aid is wracked with guilt. My mother begged her not to leave. But she can’t work 24/7. She feels like she abandoned mom in her hour of need. I told her she was a blessing, who I literally feel was sent by God, and that mom knows she didn’t abandon her, and that the Bible says we don’t know the day or the hour. Idk if she is religious but I wanted to offer some condolence. Everyone is offering me condolences, but she is grieving alone.
Its all just too much. Also hospice called me with their excuses today, and said they had “no way of knowing”, on which I called bullsh*t. They didn’t believe me since they didn’t see it themselves.
Thank you everyone for listening, and for your condolences.
Being a caregiver is extremely hard.
Our emotions are all over the place as caregivers.
You have experienced a significant loss in your life. It’s going to take time for you to process your emotions. Healing doesn’t happen overnight.
Wishing you peace.
Are there other Hospice organizations that have hospice facilities in your area?
Is it maybe time to transfer mom to a nursing home with hospice care? That worked well for us at the end with mom.
If these are mom's final days, after all these months, I feel like this is a reasonable request - rather than having to transport her to the hospital and then a facility.
It does sound like things are changing as if it’s the final days .
Be kind to yourself and take your time recovering from this excruciating journey.
I'm sorry that hospice let you down, but God didn't .
When things have calmed down a bit, you may want to write to the head of your moms hospice agency to let them know horrific the treatment was that you and she received from them, so hopefully no one else will have to go through what you both did.
That's what I did after my husband passed as I didn't want anyone else going through what we had been through with our hospice agency.
And since that time I have heard that some major changes for the better have taken place in that particular agency, so it certainly can't hurt to share your experience.
But for now, just take care of yourself, and know that you did the very best you could,. And take comfort that your mom is now finally at peace.
God bless you and keep you in the days, weeks and months ahead.
In the end, there are lots of hospice organizations and some care more than others. It has become primarily a business.
You did right by your mom, no matter how awful she was to you. You did your best and that is all anyone can expect, from ourselves and others. You are only human and you were subjected to a lot the last 6 months of a lifetime full of stuff.
Maybe take that special aid on a picnic and grieve together for the end of a human life so closely linked with each of you for so long. It can be therapeutic to grieve with another that walked were you did.
Hugs for all you did and may The Lord give you mercy on this new journey of grief.
I am sorry to hear this update, but I am glad that you are so perfectly realistic in giving it to us.
My father needed hospice last year. 3 of the 4 in-patient hospice facilities near him closed shortly after the pandemic.
i was so very disappointed with them! They don’t really do any besides providing morphine for the family to give and i bet they bill $$$ to do that.
Will you be able to handle your mother when she is bedbound ?
Because that is where she is at……and changing her in bed when she soils . I have to imagine getting on and off the commode is taxing on Mom at this point . Let her rest in bed . If you can’t manage her bedbound at home , get her in a nursing facility where they can care for her in bed with or without a foley .
I’m sorry about how hospice is not working .