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.
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.
It does sound like hospice is doing their job adequately for your mom’s situation.
It is hard to watch someone linger.
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.
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.
She’s getting some improvement and overall that’s a good thing. At this point, who cares where the help comes from?
You’re obviously appropriately concerned and fully aware of what’s what.
Be at peace with the fact that you’re doing all you an.
Because the truth is that NO ONE could EVER know such a thing.
Try to stay mindful. Stay in this day and make decisions based upon what is happening today.
Going backwards is of no use to anyone.
This was a decision made by your MOTHER herself, by her medical team. Honestly, at this point, none of this matters. It OFTEN happens that a patient, not expected to thrive nor to survive, surprises both themselves, their family and their medical team. There is nothing unusual in that.
I think what OP is saying is she would not have moved mom from the facility she is in and back into her own home (moms home not the OPs home) if she knew that mom would not be dying in the 3 - 4 weeks that she was told her mother had left to live.
This has been going on for at least 3 months now, maybe more. OP is burnt out having to manage mothers in home hospice (though she now has daily one on one caregiver hired she still has the obligation of weekends), her own family, her own needs, moms house, her own house, etc. Plus mom still thinks she is running the show and often undermines OP and makes decisions such as the Thanksgiving decision that make life harder for OP when she told the caregiver to take the day off on the day after Thanksgiving.
Now the question for OP is how much longer will mom thrive and will mom outlive the money she has that is going for all of this one on one round the clock care. Once moms money runs out OP will have no choice but to move mom back into a facility and sell moms house.
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.
I don’t know why your mother’s doctor and therapists made that decision to put your mother into hospice care. Perhaps they realized that your mother was too weak to do the exercises and that’s when they made the decision to put her in hospice care. I don’t understand why the doctor and therapists did not explain to you their reason for putting your mother in hospice. To put your mind at ease, perhaps you should ask them why they put her in hospice care instead of continuing with the therapies.
My Dad got better in hospice also . He was in a hospice unit at the hospital. He got better so he got kicked out to rehab . He rallied for a bit and they extended rehab knowing it was a temporary improvement ( cancer) . Dad was trying to get home , but then he declined again . Then Dad wanted to go home on hospice but my mother said NO , she couldn’t deal with (strangers) aides coming to the house . Dad ended up going on comfort care in long term unit ( upstairs in the same SNF where he was for rehab) for 2 weeks before he died . I felt so bad . Dad worked hard to get home , only for Mom to say No because he needed 24/7 aides coming in . At the time my mother had undiagnosed dementia which she and Dad had been hiding from us . Mom was unrealistic to think Dad was ever going to be well enough to come home without help coming in . We thought it was just because she was in denial about him dying . But it became apparent it was also dementia , she was acting crazy some days, yelling at Dad to get up and walk . I ended up getting stuck telling Dad he wasn’t going home and Dad told me to take care of Mom because she “ doesn’t think straight anymore” .
Is she more calm, comfortable , less abusive ?
If so, perhaps take comfort in that .
Another poster had a very good point that your Mom chose this . Maybe she is too tired to try therapy and/or prefers resting in bed ??
It is a circular argument , let it go . All you can do is deal with now .
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.
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.