I need help with this Hospice stuff!!!

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I need input from someone who has been there and done that. Please dont relate unless uve been the sole caregiver and your hospice family memeber was cared for by u in your home. I keep hearing all these fabulous tales of family who " helped Mom/Dad pass on ".... um , who took care of you and your sanity? did you have children living with you? I feel like Im the only one that has kids and is working.... I dont feel this is an honor, I feel like this is going to stress me beyond belief, and NO ONE is listening to me. All I hear is " dont b selfish, this is for her, this is what she wants, itl make the kids grow up". I really need help with coming to grips with this... its seems to me that the ones that are solely in favor of this are the ones that arent willing to stay with her 24/7... do i sound selfish, probably, and i dont care, i have to think about me and my kids too


Short - so what exactly are you trying to do?
Has her doctor written the orders to have her evaluated for hospice?
If so, has this been done and what was her score?
Does she have MediCARE?
What does she have that is terminal, e.g. what disease does she have and what is her care plan?
Is VITAS or Compassus in your area?
oh wow.... im trying to figure out how im supposed to be able to care for my mom, my kids, work and sleep..
she signs up for hospice next week, her case manager suggested it.
she has stage 4 COPD, congestive heart failure, chronic asthma, emphesema, panic attacks and depression
there is no care plan other than to make her comfy
shes going thru a local hosp for her Hospice, and ive been told they are all the same
Short - so is she living at her home or with you?
Do you work outside of the home and how old are your kids?
Do you think she can qualify for Medicaid?
She is on Medicare, correct?
I don't believe all Hospice's are created equal. We had a private hospice for my mom, as opposed to the county hospice. Same billing thing, but we liked them MUCH more. We didn't need the counselor they offered, but that might be a help to you. They told us that they were there for the caregiver as much as the patient. Jury is still out on that since we never took them up on their offer.
Recently, my mother enrolled in hospice, as well. They've been very kind and helpful. My mom is in the NH, so I do not have her in the home with the hubby (who is disabled with many of the same issues my mom has), my son, my step-son and his wife with their two kids (aged 5 and 10). You can see, my family has to take precedence over my mother. I'm also trying to be supportive and helpful to my daughter, who has recently kicked out her boyfriend/the father of her two children, due to abuse issues. Yes, he's looking at prison time.

Anyway, Mom has basically the same diagnosis as your mom. And I've spent the last few years being her only support. While she was at home, living by herself, I went rounds with docs and hospitals trying to get her decent care. No one wanted to believe I wouldn't take her into my home (no room!) or move in with her (leave my family?), so they kept sending her home with symptoms of sepsis, etc. Finally, after getting a social worker with a real brain, I managed to get her into the NH. Now, hospice is helping.

One of the first things I learned about hospice is that they're there for the family as well as the patient. If you need help coping with everything, please, please, call your mother's contact, and explain to them. They can offer counciling, and advice. If nothing else, they've allowed me to vent, and validated my frustrations and anger, as well as my grief.

The addition of hospice should not add to your responsibilities, but relieve some of the stress.

No single business is like another. Your experience will be different from all others, since you'll be dealing with personal issues with a real person. Give them a chance to help you help your mom.
Shortmomma - You're right. Noone takes care of the caregiver. I, too, was in your shoes last October, feeling overwhelmed, exhausted, alone. At first I hired outside help a few nights a week so I could get some sleep cuz he would be up half the night. Then decided I needed even more help and hired a live in. Turns out he died a week and a half after she started. Wish I would have hired her sooner but kept thinking this could go on for months. Even with the live in, it took 2 of us to transfer him the last 5-6 days he was alive. Hospice talked at that point about putting him in a hospice facility for a respite period. My concern was that he would be even more confused so instead they provided nurses overnight for 4 nights so we could sleep in shifts. I do know how very hard this all is and how difficult of decisions that need to be made once hospice is involved. I wouldn't wish this on anyone. I can tell you that once the case manager comes and evaluates the situation, they determine what assistance is needed. You will need to be there for that meeting so make sure you stress to her that some respite is badly needed by you and see if she can't help make that happen for you. Any caregivers provided by hospice, whether they are aides or nurses, are paid for by Medicare. And any inpatient hospice services that are deemed necessary are covered by Medicare as well. My dad had enough money to pay for the outside help I hired. If your mom doesn't then you really need to push for hospice to give you some respite care. And even if you don't even sleep during that time, like I didn't, at least you have a few hours away to gather your thoughts, to renew your patience, to have someone else help you to carry the burden. Again, I wouldn't wish this on anyone and I am very sorry you are struggling through this. I'll keep you in my prayers and keep us informed what happens with the hospice situation. Hugs ~ Kuli
short, I think you are getting good advice here. When my mother was in hospice care, she was home. Had I been alone for that watch, I would have taken them up on the suggestion that she go to a hospice facility. I now care for my Dad, 24/7, in our home. He is failing in so many ways, but won't consider hospice at all. If your parent is willing to allow hospice help, perhaps they can also help her see that care in their facility might be in the best interests of everyone (if they believe that; and without even knowing her situation, but reading your stress, I have to believe it is). You can visit any time, day or night. BUT...and this is huge...you can leave, and know she is cared for. You can count on trained people to bath her, help her get meals, so you needn't use your energy and time with her fighting about that.
And what others are saying about hospice being there to help the whole family is true. Tell them all your concerns. Don't hold back. They see families in times of difficulty and have lots of ways to help. My hope for you is that you can read these comments, and take some solace from them: help is coming soon. They are really angels on the planet.
PS HURRAH for you for being smart enough to tell people not to bother commenting if they were going to misapprehend your situation and criticize you. That's the first time I've seen that on this site, and I think it's darn brilliant. And it tells me you can take care of yourself, and your family, and give them the priority that works for you. Knowing what you don't want is huge. You are my hero of the week.
PS...panic attacks are so common with people with lung issues like COPD. Hospice can help even with teaching you what is typical, what you can expect, what to watch for, how things usually go and answer every question you have....in my experience, that has been true.
Shortmomma, I like your huspah! I feel If they can't help get out of the way! There are different ways that a person can be in Hospice. For example, my Dad 1st went into Emergency Hospice for 1 week because the Doc's thought death was eminent. Well he graduated from there and we opted for NH Hospice as it was just Mom and me, yeah at the time my Sis promised she would quit her job and relocate to help take care of Dad. While that sounded good, I knew who I was dealing with and knew the load would fall on me and my 86 yr old Mom...so ME!
Long story short, Dad went into NH care under Hospice for which Medicare paid for. We used Vitas and Shortmomma let me tell you, it was the best decision Mom and I could have ever made, Vitas was exceptionally caring, professional and yes...they were heaven sent! I had prayed, cried, screamed, lost weight and thought I would loose my mind until angels led me to the path of comfort and care for my Parents and me. So if anyone says me, me, me....well so be it because if you don't take care of you nobody else is going to do it. To heck with being a Martyr. Love and care comes in many forms, as long as it gets done who says you have to surrender your life for another. Also, we applied for Medicaid while Dad was under Hospice and it was approved for his long term care. Shortly afterwards, Mom went to the NH with Dad under Medicaid.
Peace of mind, get yours Short!
Wow ! ya'l are awesome !! and here I thought I was being a frustrated snot for telling readers to not post if they couldnt relate ...ha! lol.. And amazingly enuf, I found some that can relate with 1st hand expierences... Thank you.....
Mom is still at home, and now shes in denial. Wants to know who referred her to hospice, wants her car to " mabey" go for a drive, be in total control of my home..... Ive started saying shes like a spoiled 2 yr old, with a gun... Its hard to explain to my sisters that Mom is manipulating them, and that she acts like 2 diff people. All sweet and weak while they are there, and cursing me and trying to purposely agitate and anoy me when they leave. She seems to have gotten worse , mentally, since she signed up for Hospice. More bipolar..... and my sis and my aunt actually said " shes gonna die, why not let her do what she wants",,,, uh, because me and my children are the ones dealing with her. and no one should feel put out of theyr own home, because an adult is acting like a child trying to get theyr way. (I came real close to telling them if they could do better I could have mom packed in 20 mins)... Part of my fam is no longer talking to me, because I dont have that same mind set...and that hurts, because these are the same ones that said I could vent to them...
I was actually an hr late for work this am, I overslept, I was exhausted...thats happened twice in 20 yrs.... head held high, I pray daily, tell my kids and my man that I love them , and try and guage Moms moods so I know how my night will be.. HUGS to you all

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