I cant help but wonder how things would be different if Mom hadn't been put on hospice.
I was going to ask, "was it right to put mom on hospice". But the fact is "I" didn't do it. Her doctors, PT, OT, respiratory therapists and others caring for her at the rehab agreed it was the right course. Even my mom agreed to it. She had been through something like 6 courses of antibiotics (oral, IV and inhaled) just for that particular bout of pneumonia, and was not improving.
The fact that she seems so much "better" now is because she has 1:1 care, eats and drinks regularly, elevates her legs so she doesn't have constant edema, and takes all her meds as scheduled.
I keep wondering what would have happened if she had continued PT and respiratory therapy. Would she be up and walking now? Would she have some quality of life besides laying in a hospital bed?
It's a circular argument, because without the hospice care she likely would have done what she always did: Not let the visiting nurses in after a couple of visits, not gotten out of the kitchen chair all day, and not eaten or consumed fluids without someone there constantly cheering her on to do so.
Her "end of life" care is saving her life, but it's not really a life. It's heart wrenching.
Mom made her choice and good for her. Be thankful that you didn't have to make that decision as so many of us have had to for our loved ones.
And how is she now getting "1:1" care? I know hospice isn't giving that to her, so who is? Hospice only has a nurse come once/twice a week and aides a few days a week to bathe her, so unless you've hired someone to be with her 24/7 1 on 1 care just isn't happening like you think.
My late husband was under hospice care in our home for the last 22 months of his life and he too was completely bedridden. Hospice only provided about 1% of his care, while I and an aide that I hired to come a few hours in the morning did 99% of the rest.
I wish you and your mom well and again just enjoy whatever time you may have left and make sure that you leave nothing left unsaid.
The home where my mother was only allowed a three month stay. If it went past three months a person could reapply for another three months.
They even had an extra bedroom in case out of town family members wanted to stay in if they were visiting the resident.
Yes. Life, but not quality of life.
Yes. Heart wrenching.
(((Hugs)))
Anytime she is taken off of hospice care, she has an episode that warrants putting her on hospice care again. This has been going on for almost 4 years. I know she loves the extra care and attention from the hospice nurses but for the past 4 years has had no life. She is a husk of what she was, being kept alive but not living. It is impacting our lives as we see someone wasting away, unable to get out of bed, doing anything for herself, not knowing where she is or even who we are. Of course, there are no other options, so we just try to visit as often as possible and watch her slowly, slowly, slowly lose more and more of herself.
To answer some of the questions that were asked: The doctors did have good reason to recommend hospice. Mom has two antibiotic resistant lung infections that are said to be “colonized”. One of her lungs is partially collapsed. She’s been on and off heavy duty antibiotics for over 2 years and they cannot continue to give them to her.
In the meantime she lost probably 80lbs without trying, and is down to about 95lbs. She is also on 4L of O2 as her baseline, and up to 8L to use the commode. So, yes, upon reflection, her condition is very serious, and her medical team was right to recommend hospice.
My pastor always refers to death as “moving into God’s nearer presence”. I do believe that life continues in some form, and I do not see death as a failure. I feel it is a natural and expected end of life, part of the never ending cycle.
It is hard to see mom so frail and struggling to breathe, when she’s always been so vibrant and healthy. And yes, she is pretty demanding and difficult, but I love her very much.
I think my angst has a lot of sources other than just second guessing the decision that was made. This home care situation is precarious to begin with, and mom may well run out of money before she dies. Then Medicaid will decide what care she gets. I never should have promised to bring her home to die. I didn’t realize it was a promise I might not be able to keep.
If my mom had taken dad off hospice and insisted on getting him aggressive care, my dad might still be here today vs dying in August. With dementia, incontinent, delirious, firing the aides. He would have been in a nh long before now and escaped that only by dying expeditiously.
My mom blamed herself for my father’s death. Dad had heart surgery. While he was recovering in the hospital after his surgery he had a stroke.
Mom said to me, “I should have told your father not to have the surgery, then he wouldn’t have had a stroke.”
I told her that if hadn’t had surgery he would have died and that his stroke was not her fault.
Don't second guess the decision. My DH always plays the 'what if' card and it makes me crazy. No matter what we're doing, he always says "Hey, you know what we COULD be doing?" Yes, anything ELSE in the world, but THIS is what we ARE doing.
Your mom is being cared for. Her needs are met. You admit that she wasn't doing well alone. She's doing 'better'. Be grateful for that.
And don't worry about how long she may be in Hospice. Everybody knows my MIL has been in FT Hospice for almost a year. We were told it would be 3 weeks at the most.
They really don't KNOW. So just go along with it and take it one day at a time. Don't play the 'shoulda-coulda-woulda-' game. It's depressing and pointless.
Be grateful that your mother is being well cared for and is comfortable.
Take care of yourself.
That feeling of uncertainty is draining. It zaps our energy.
Please take emotional breaks from time to time and do something nice just for you. You deserve it! Every caregiver needs time off, mentally and physically.
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