Crossroads

LauraCT

Crossroads

LauraCT
Not only am I tired and dealing with health issues of my own, but I found out a few days ago that if Dad doesn't decline more within two months he won't be recertified on hospice. That's it, over and done! It was like I was sucker punched. I could barely breathe.

It's funny, when the visiting nurse kept pushing me to put Dad on hospice last August I was terrified. I thought for sure that once he was on he would die right away. I wasn't ready for that. I prayed and pleaded with God for more time with Dad when we signed the papers to start hospice care. As the months went by, I realized that hospice was providing us with the support we needed most at this difficult time. I became so grateful.

Life became a rhythm of caring for Dad with the help of aids, the hospice nurse, and physical therapist.  No matter how tired I got or how much pain I was in I knew that there would be the extra support of hospice. Recently my husband encouraged me to ask for more aid time. He knows how caring for Dad and dealing with my health issues has been wearing me down. I asked, and they said that they were giving me the most they could and suggested I hire more help from a local agency. I had tried that before Dad went on hospice and it was a disaster. It was just a paycheck to them, not a calling. They didn't care about my Dad the way these hospice aids do.

So now we are at a crossroad. Which way do we turn? I'm so weary, but that shouldn't mean I give up on Dad and hope he declines just so we can keep hospice services. I realize hospice is for those who have a life expectancy of 6 months or less and he has outlived his expected time, but who knows for sure when someone will actually die? Why does that mean we have to be penalized? Dad could be taken off hospice then die the next day!

Before Dad was on hospice he could walk with a walker, sleep in his own bed and use the toilet. Now I have to use a lift to get him in and out of chairs and bed, he has to sleep in a hospital bed, use a commode and has a Foley. Doesn't that count for anything? Decline is decline! Dad is totally housebound now.

I called Dad's health insurance company to find out what to expect if he does get taken off hospice, the nurse who has been my contact for over a year said she would call the hospice nurse to get more information. I'm praying that there will be a miracle and Dad can stay on hospice. If not, all the durable medical goods will have to be taken out and replaced by a vendor that the insurance company uses. It will also mean copayments and a lot of out of pocket expenses. It is overwhelming me emotionally and physically.

I need a vacation, but that is out of the cards as long as Dad needs 24 hour care. I am still grateful for the time I have with Dad, it's just hard, a lot harder than I ever expected. So, if you think of it please say a prayer for Dad and me. Prayers for strength for whatever the future holds. We may not know what to expect, but thankfully we know who holds the future.

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Roaring Mouse

I never had access to hospice for all the things you are mentioning for your dad that I would have loved for my husband. I would have loved the assistance. Maybe you can state for \"quality of life\". I'll keep you in my prayers.

jan

Hi, LauraCT. I am thinking of you today. Hospice is an amazing program, and the peace of mind it gives is beyond measure. My mom had dementia and I tried to get her in Hospice, which was declined the first time we requested it, as her overall health was very good and she (only) had dementia. Three months later she had declined so severely that she was accepted into the program on the spot. So I too, lived with the constant anxiety of her getting better (and being booted off Hospice) or getting worse (which who actually wants anyone to decline? It's cruel.) It is a miserable place to be between those two spots, and the anxiety of it is horrible. As it turned out, her decline was so rapid, she never made it to the first 6-month review. But I couldn't possible know that at the time, nor do you know what is ahead of you for your Dad. I certainly do wish for strength for you and your Dad, and hope the peace Hospice is bringing today fills all the anxious places.

Sue

So sorry to hear this. We went through this with both my mom and my dad, but hospice was able to somehow justify them staying on past the 6 months (my Dad went almost a year and a half, but he was constantly deteriorating, which it sounds like your dad is doing the same). I hope they can find a way to do the same for you. The services never worked out well for us either, but hospice did have some referrals for people who they worked with and that seemed better. You might ask them about that. I will definitely say a prayer for you all.