hospice today - hard to bounce back

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Phil's wife

Distinguished member
Joined
Apr 19, 2010
Messages
141
Reason
Lost a loved one
Diagnosis
05/2010
Country
US
State
NC
City
Wake Forest
hi,

I am feeling so down today - most days I can plunge forward and do okay with things but have had trouble bouncing back today. Hospice came to take initial information and get us started. Not sure that I have any questions for you guys, just feels good to tell all of you who I know can unfortunately relate.

Prayers for all,

Stephanie
 
Hi Stephanie,

I've noticed this is hard for many people. But it becomes easier after the initial emotions have time to settle down. If your experience is what is reported so often, you will be very glad for the help and support they give you. Big hugs,
Ann
 
Hi Stephanie,
thanks for posting. I didn't have the courage on the day hospice first came to take our details. I felt as if someone had thumped me in the heart for several days. Now I feel differently. I'm so grateful for the support and appreciate how they have helped us keep going. I'm thinking of you and sending hugs. Take care, Avril
 
hi Stephanie,
I can relate, I had my Hospice intake visit 2 days ago. In California, they have
a new POLST form you need to complete for emergency responders.So although I already
did a durable power form, declining CPR and invasive ventilation,I had to complete
this new form and it was very hard emotionally. The visits start next week and I am
apprehensive about a stranger showering me. Although I am a retired RN and know I need the
help, it is hard to accept. Hospice workers are very compassionate, so I anticipate they will really
be a great help to and my family. Hope it goes well for you and Phil.
blessings, Pat
 
Hi Stephanie,

I know it is hard for many people to start the hospice care. There is an important choise you have to make and a hard one at that.
My father was diagnosed in Febuary and rolled into a bridge hospice in May. That meant that he got all the care of hospice but not the medicine and he could still go to hospitals for treatment. Then in October we all decided on complete hospice care. It was very difficult, but it became more and more apparent that his wish of being comfotable when the time came, was not possible unless the medicine he needed were right there in his house when he needed it.

Because we chose the hospice care, we could ensure him he was going to be all right.
My father passed away a week ago and we were able to do exactly what he wished and he passed away peacefully.

I hope that this will give you some strength in knowing you are doing the right thing for him and there is no time limit on hospice care.

My thoughts are with you.

Monique
 
Stephanie-
Hoping you have a better, more peaceful day tomorrow. Keeping you & yours in my thoughts & prayers.
Marianne
 
Stephanie,

I know how hard it is to reach out and get started with Hospice. I did it two weeks ago. I want to tell you that both my caregiver and me are so happy with our Hospice aides, nurse, and volunteers. Once you get into a routine, it really is better than when you were trying to go-it alone.

I smile more and cry less and my partner/caretaker is less stressed. Thus, our time together is so much better. Hope you and Phill find it works the same for you.

Hugs,

Diane
 
Stephanie,

As always, you are in my thoughts and prayers. I do hope all goes well for you and Phil. Take care.
 
I was wondering how your clinic visit went the other day? We spent about half our day over at the Duke clinic getting an EMG. We loved the clinic though. I am guessing they were the ones who set up the hospice. It should be a lot of help. I am also beginning to have a lot of trouble with my PALS on my own. I have been having to call his dad or my son almost every time we transfer. I guess it is time for me to go in there and bond with the new lift ;/ I hope you have a better day today. By the way, he told his dad he absolutely hates the new hospital bed and he wants something different. I finally gave him a Benadryl at about 3:45 am before he could go to sleep.
 
Hospice intake is exhausting. And Pat's right, there's something about that POLST form that's very unnerving.. maybe because it's bright fricking red! But once you get settled into a routine (which took us a few weeks) you'll be really happy you did. Good luck
 
I had my first hospice aide visit today. She was so kind. It felt like a spa visit.
Most of all I was not embarassed by the shower and still could breathe pretty easily after.
Previously a shower would exhaust me for the rest of the day and I would be left gasping for air.
What a blessed relief todays visit was.
Blessings, Pat
 
Glad to hear it, Pat.
 
Pat, so glad your aide visit went well. That's a great positive way to look at it. Happy you like your aide and the experience. We haven't had an aide visit yet, but I hope Phil has an equally good experience.


Stephanie
 
Pat, I'm so glad for you. I know what a relief it must be, to have crossed the line and have help showering.
xoxo
Ann
 
Pat, I'm so glad that your experience was as good as mine. I too feel like I start my day with a spa visit. I had a pedicure last Friday and a massage this morning. Heavenly. :)
 
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