In Denial?

[MamasGirl59]

My mom has been at home on hospice since Thursday. I’m thankful she is home, like she wanted to be. She can’t really communicate which makes managing her pain worse. I didn’t realize Hospice is more of a glorified pharmacy.... that’s all they’ve done is write prescriptions and pushed for morphine. Everything else has fallen on her husband and I to take care of.  
 

At times I find myself thinking she’s just sick, not dying. That I am just nursing her back to health. I feed her water and her medicine and food when she takes it. We move her around in the bed to prevent sores, and change her and bathe her. 
 

I can’t cry, it’s stuck in my chest, or maybe it’s because I’m not accepting the reality of the situation. She’s still here, she’s still breathing, she’s still swallowing. I don’t want to let her go. I love her so so so much. 

[MartyT]

3 hours ago, MamasGirl59 said:

I didn’t realize Hospice is more of a glorified pharmacy.... that’s all they’ve done is write prescriptions and pushed for morphine.

Every hospice is different and I don't know anything about the one that is caring for your mom, but I hope you will share your concerns with the RN case manager or leader of her hospice team, especially if you're not sure about how her pain is being managed. If there is a discrepancy between what they provide and what you're expecting from them, I encourage you to speak up and get your questions answered, so that you're all on the same page in managing your mom's care. The goal of hospice should be to provide complete comfort for your mom and also to provide care and support to you and your family as her caregivers. 

See Everything Your Hospice Team Needs to Know

[kayc]

I am sorry for your experience with hospice so far, I've had better experience with them in the occasions I've dealt with them both with my MIL and with my sister.  My friend Jim was not happy with them when he went through it with his mom. 

Sometimes the reality can be hard to let sink in and fully realize, it can be such a shock and an adjustment.  No one made me realize my sister was going to die when I went through it with her...my other sister was made her power of attorney but unfortunately she has dementia going on so I had to step in and be her advocate, but much information was not relayed to me so it was a shock when I realized it.  I knew she had pneumonia but she'd had it many times before, this time they weren't hospitalizing her like they had in the past.

There's a myriad of things you're probably going through all at once, I do hope you'll consider Marty's advice and talk with them about their plan overall.  Wishing you strength and peace as you're going through this.

[MamasGirl59]

@MartyT and @kayc I had a really good RN come in today and gave us a lot more guidance. She’s the best person they’ve sent in so far. I feel a little more comfortable trying to keep my mom comfortable, although I’m still heartbroken. I’m sorry for your losses and thankful you have this forum to help others. 
 

These have been some of the hardest days of my life, and I know they are only going to get harder, which is scary. I am trying to be strong, I really am, but I don’t know how I’m going to get through all this. I am leaning on people, and I am trying to find the joy in my newborn son... but it’s hard to find any joy in a broken heart. 

[MartyT]

♥️  ♥️

[kayc]

12 hours ago, MamasGirl59 said:

I am leaning on people

That is so important and I'm glad to hear that you are doing so!

12 hours ago, MamasGirl59 said:

I am trying to find the joy in my newborn son

Keep trying!  When my husband passed, 15 years ago, I was blindsided, he was still young, we thought we had years left together!  On day 11 I ran across a refrigerator magnet and bought it...I am attaching a picture of it.  I began trying to practice just that.  At first I'd look over my day and try to remember anything good that happened that day.  Maybe it was someone letting me merge in traffic, or holding a door open for me, or a call from my sister, anything counted, nothing too small or insignificant.  And something began to happen...I began to LOOK for joy!  I did not compare it to the loss of my "big joy," George, as comparisons are real joy-killers.  Instead as I looked for joy I began with anticipation, and I learned the power of living in the present moment.  It was a life-changer for me.  We all have downers in our day and will continue to, but I've learned that how we view life really does make a difference..  It is an art we practice, it doesn't just magically happen, it requires effort on our part.  But it was a life changer for me!  I figure I don't want to miss anything good, I need all the good I can get in my life, all the more so with my George gone!  Keep looking for joy in your baby son...notice his smile, the way he smells, feel his little heartbeat against you, enjoy the moment as you cuddle him and feed him.  You don't want to miss one moment of this, it goes so fast...my children are 38 and 36 now, it seems like yesterday they were born!  I have had many losses in my life, beginning when I was a teenager and it's only increased since...I have learned to coexist with my grief.  Deep within my heart I carry my grief, I feel it, I miss my husband and dog each and every day, those were the two hardest, but I've also lost my MIL & FIL, sister, parents, grandparents, aunts & uncles, a cousin, niece, nephew, many pets and friends as well.  It doesn't overwhelm me anymore, I try to live in the moment and live one day at a time, I know I can do today, no matter what it holds.  I didn't see how I could survive the pandemic as I live alone, but somehow I am, again...one day at a time.

Sending you hugs from Oregon!