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
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
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!
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.
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.
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?
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
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?