My 89-year-old dad has declined so quickly. At the beginning of October, he had had double pneumonia for months, but was still driving. Mid-October, he fell a couple of times. A few days later, his blood pressure dropped to something over 40. Landed him in the hospital, but he was in bed for several days in the ER while they looked for a bed for him. By the time they found a bed, he couldn't even sit or stand up due to orthostatic blood pressure issues. He could barely participate in physical therapy and just declined from there. Now he has lost the use of his legs, can't sit up, is fully incontinent, is exhausted and sleeps most of the time and has some fissures on his rear end from the incontinence that are causing great pain. He won't be able to go to doctors appointments because he can't sit for more than 20 minutes in a wheelchair without getting dizzy. We just brought him home on Sunday and he has a round the clock caregiver. My dad was always such a hard worker and "in charge" and I think he still thinks he will recover from this, but I don't think it's possible at his age and with having so many weeks in bed. I just want him to be comfortable at this point but I don't think Mom is ready to pull the Hospice card. I am an only child and feel stuck in the middle. Any advice on how and when to talk to him about it and if you wished you had done it sooner or waited longer on Hospice?
Mom started off with palliative care and then progressed to hospice. She was ready for comfort care and was more than ready to leave this world.
Hospice is all about keeping a person as comfortable as possible. They provide a social worker and clergy for everyone if desired.
I highly recommend an end of life hospice facility or care home if one is available.
you tell mom and dad it’s just added support system for dad.. you’re just stating what is usually offered. Obviously mom and dad, we need this extra layer of support care. It’s okay.
Hospice is supposed to be end of life care, but mom graduated out of hospice 3 times.. so.. the third time she went to heaven.
It’s ok… put the blame on his doctor..
*He doesn't have to go to doctor's appointments anymore. They'll come to him from now on.*
There are plenty of other reasons to go on hospice care, but that one alone is the biggie for a lot of people.
Hospice will not try to kill him, and they won't withdraw his medications, but they will focus on his quality of life, a large part of which is dependent on getting relief from those fissures. My mother was on hospice for eight months, and she was treated for terrible pressure sores the entire time. She was in no pain, and her hospice nurse was a godsend.
Mom was deep into dementia and as POA I spoke with the hospice people and requested hospice. She never was told she was in hospice. She understood that she was getting extra home help and that was okay with her. She was also grateful that visits to the ER were over. She was in hospice for 2.5 years, but they kept dropping her, then taking her back. That was a mess.
Are you POA or is mom? If it’s mom and she’s reluctant, I suggest asking the doctors to talk to her about it. She may have a skewed idea of what hospice really is. If it’s you, do what you think best for dad. You don’t need mom’s concurrence.
As for dad, he may not need to know he’s in hospice, depending on his cognitive abilities. His medical team can advise about that.
So sorry you’re facing this.
My written directives spell things out pretty clearly, and I have prepared a personal letter as well. Literature on MAID and VSED can be easily found in our home, so there should be no doubt as to where I stand as of today while I am fully competent mentally--but less so physically.
So, when I had to approach dad about hospice I was nervous. We were in the ER and he'd just had a brain MRI that revealed his brain tumor was growing and causing him mobility issues. He was terminal at that point, nothing could be done for him medically to extend his life. I told him that there was no meds or surgery he could get for the tumor he was aware of, and that while it was considered terminal, he could easily live for 2 years with hospice comfort care. He was solemn, but accepting, at 91 years old. We went back to AL to tell my mother, who took the news well.
Hospice and the carers at AL took good care of dad, but he passed 19 days later after getting a bad UTI.
Mom was in Memory Care and vehemently opposed to dying, period, no matter she was 95 with advanced dementia and CHF. In her condition, I didn't even tell her we'd brought hospice on board, and she had no idea. She passed 2 months later and neither mom or dad were given morphine until the very end of their lives, which I approved.
Best of luck with a difficult situation.
And I know that hospice also has folks that will come out to the home to explain the purpose of hospice to your dad and mom and then let them decide if it's right for them.
Hospice will have a nurse to come out once a week to start(more if your dads wounds need to be treated)aides to come bathe him at least twice a month, and you all will have access to their chaplain, social worker and volunteers.
Also they will supply any needed equipment(like hospital bed), supplies and medications all covered 100% under your dads Medicare.
My late husband was under hospice care in our home for the last 22 months of his life and was completely bedridden at that time. And to be honest I'm not really sure that he understood that he was under hospice care and that it meant end of life care as my husband had vascular dementia.
I know that often folks wait too late to bring hospice on board. So I would recommend perhaps calling your local hospice agency and ask them to come out to do an assessment and they will be very helpful in answering any questions you and your mom may have.
The bottom line with hospice is that the patient is kept as comfortable and pain free as possible until they leave this world for the next.
And I'm sure that is all you and your mom want for your dad at this point in his journey anyway right?
Are your parents expressing to you anywhere in all of this that Dad is "over this", "tired of this", "doesn't want to go to the hospital anymore", "doesn't want treatment anymore", "exhausted", and such like statements?
Because if he is NOT, then he really isn't asking now for end of life care, which is what Hospice is.
I will give you an example of my Dad in his early 90s. He told me he was quite tired of life. That he had had a good one, but that he longed now for the "last long nap". That it was a burden for him to have my mom trying to cook good meals, getting him on the scale. That he didn't want blood work for a mild anemia because he didn't want "to do anything at all about what may be causing it." That, in fact, if docs tried to treat him I should stand between them and him with a gun. I had many patients tell me this themselves, but saying often they could not speak with their families because they weren't ready to hear it.
These kinds of statements I wrote, you would be hearing from someone ready for Hospice.
If you don't hear them you should be VERY LEERY and very careful about bringing up END OF LIFE care which is what Hospice is. Many people do not EVER accept they are dying and do not EVER want YOU to accept it, nor do they wish to speak about it.
You can approach the subject with "Dad, you have been having lots of tests and appointments and treatments of late. How are you feeling about that? It must be exhausting".
Then stop, look and listen as they tell the kids in school.
And take it from there.
Otherwise, it is up to the docs to suggest, to ask questions "What do you want if...." or "we can try this or that, but if you don't wish to we can keep you comfortable at home" or "There isn't a whole lot we can do now to improve or change things.....".
As a nurse I can tell you that most people do NOT REACT WELL to others telling them it is time to give up. And that is, whether you say it nicely or not, what Hospice is. It recognizes the reaper is at the door, and it is a determination to let him in. And that doesn't come to all people.