Monday, August 2, 2010

Hospice

Jeff fell about three weeks ago as he was getting up from the couch.  He landed with his full weight onto our coffee table. 

As you know, Jeff is essentially blind in the right eye and has very little vision remaining in his left eye.  He has been able to see shapes and shadows, but in the last couple of weeks even that has been growing dim.  And the cancer in his brain is affecting his sense of balance as lesions in the spine are affecting the nerves in his toes.  All those things combined make him very unsteady, and by the time he realized he was falling, he was leaning too far backward to correct.

He hit hard.  But God was merciful, and Jeff didn’t break anything or cause any serious injury.  He had quite a bruise across his back, and two weeks later when he still wasn’t recovering, I insisted we go to see his doctor.

While we were there, he requested a wheelchair.  And when they had discussed how much difficulty he was having getting upstairs and just taking a shower, Dr. Morgan suggested it was time to give hospice a call. 

I made the call for the wheelchair and it was delivered the next day.  I called hospice and arranged for them to come and discuss strategies for showering.  What I didn’t realize was that when you call hospice, they engage their organization like a precise military operation.

It felt like an invasion.  And yet a compassionate invasion. (Can there be such a thing?)  The phone was ringing several times a day to arrange for all the different visits. 

The coordinator came on Tuesday and ordered the shower chair.  The medical supply company rang the bell at 9 am on Wednesday to deliver the chair.  A massage therapist called Wednesday and left a message stating he would be here at 2 pm. 

On Thursday, his nurse came and a social worker as well.  They were here for three hours.

Then a hospice aide came on Friday.   She called and told Jeff she’d be there in twenty minutes.   (Can you sense that I was starting to feel  frustrated by this?)  I was finishing up at the grocery store/pharmacy when Jeff called me to say she was coming and to please hurry home. 

She was lovely, and in truth her visit was the most helpful.  Jeff was having a rough morning, and he didn’t think he could make it upstairs to shower, so she bathed him and helped him dress in the half-bath on the main floor. 

I just kept telling myself all week that this was all for Jeff, to make him comfortable and safe.  But they said it’s for me, too.  To help me feel a little less like his nurse and more like his wife.  I just about cried when his nurse said that.  I had been feeling so guilty about calling them because I thought I should be willing to take care of his personal hygiene.  I had actually told my mom the night before I called hospice that there was so little of me left that felt like Jeff’s wife.    I wonder if that is a common sentiment among caregivers.  That the more intense the care becomes, the more it overshadows the relationship?  So perhaps having the hospice staff take over some of that will help me focus on just being Jeff’s companion.

Now that everything is in place, I think this week will go more smoothly.  We know which days to expect which person at an approximate time.  And I know that as his condition worsens, it will be a blessing to have their skilled help to care for him.

12 comments:

heidiannie said...

Adrienne,
I have also dealt with the compassionate invasion of hospice (that is a perfect description,by the way) and it does get better as you can anticipate their arrivals. It is also good to have someone who understands to talk with about where he is and what you can do to be the most helpful to him at this stage of his illness. Sometimes it is good just to know you aren't the only one there to pay attention and often it helps that the nurses can alert your doctor or phone in test results from your home.
You have been well- supported in prayer ( and that surely will continue) and now you have physical and medical support as well.
We will hold you and Jeff and your children up in prayer and ask for comfort and peace for you all.
Love,
Heidi

Life with Kaishon said...

Oh Adrienne. I read your status on Friday and I just wept for you. I can't imagine all that you are going thru and feeling. I am praying that God will use this hospice to help and bless your family. You are a great wife. A great mother. A very, very beatutiful person.

Lisa said...

Dearest Adrienne,

I followed you here from "Life with Kaishon".

Hospice. Yes, I remember. I remember it all to well. Not for my husband but for my father. Who was diagnosed with "NONE" smokers lung cancer. The cancer soon went to his bones and then his brain. I know your story well...but from the daughter's point a view.

The guilt.......I understand and I remember my mother suffering from the guilt. I remember suffering from the quilt myself. Cancer leaves you feeling so helpless and breathless. I remember not knowing what day or time it was. I remember how my heart felt......and how I thought it was going to explode right out of my chest.

I am so sorry your family has to go through this.

I pray this week will go better for you and I pray you will find the gifts of cancer that are hidden in this disease. There are gifts you know.....and you don't have to look far for them. You, your family and most importantly your husband will find the Grace you need for this journey.

I will be praying hard for your family.

Lisa

PS.

To anyone that knows this family personally and lives close by: Send over food they do not have to cook, T.P., shampoo, soap, tooth paste. ...things you use everyday. When a family is goes through this terrible time, It is so hard to remember what you went to the store for.....never mind how you got there.

Plattner Ranch said...

Oh Adrienne,
My prayers are continually with you and the children. I am so glad that you are allowing hospice to help you. It's hard to accept help, but it will feel so good to have a little more energy to devote to your relationship.
Love you, LauraLee

Betsy from Tennessee said...

Hi Adrienne, Now that the shock of all of this help wears off, I think you will appreciate the extra time you will have just to be jeff's wife and companion. This help is for YOU too--as they said.

Cancer is so rough----not just for the patient but especially for the caregiver... You, my little friend, have so much on your plate... I am glad you decided to bring in Hospice to help...

My love and prayers are with Jeff --and you and the children.. May God Bless You..
Hugs,
Betsy

Angie - The Arthur Clan said...

I'm crying while reading your post today Adrienne...I can feel your frustration and yet the thankfulness you have in the situation as well.

We're praying hard for you, Jeff and the kids.

Love you.

deejbrown said...

Looks like God is not just inclining an ear, but is jumping in with both hands. Glad you and Jeff are accepting them....

jescandlon said...

Love you and are praying for you, Jeff and the kids!

~Janine

This DVM's Wife's Life said...

Whew, big release of breath.....My heart aches for you. This is such a huge step in this "process". I knew it was coming for you but not sure when. You cannot possibly do all of this yourself and be this "wonder woman". It is time for help and hospice is now there for you, for Jeff and your family. It is time for you to "be" and be your husband's wife. It is so common to become only the "caregiver" and lose your role as the "wife" through all of this. I have been there so many times. Adrienne, you are doing just fine. You will get through this. You know that right? So many are praying for you, holding you and your family in their thoughts, sending cyber hugs.
And yes, it will be a blessing to have hospice there to help. They know. They are skilled and emotionally ready to help you in any way. Lean on them. Lean on friends and family. If I lived closer I would be by your side in a heartbeat.
Hugs to you girly. Hold on. You will be okay.
You are in my prayers.
Amy

CalamityJr said...

Adrienne,

I'm not sure how I stumbled onto your blog (visited from someone else's but have no idea whose) and felt like you were a voice from home, since we moved to IL from OH many years ago. There are so many times that your blogging is a blessing to me - your faith, strength and courage are lessons in God's love.

That said, please don't ever feel less of a wife, as Jeff feels your love with every touch. Never hesitate to let hospice help you, as those unselfish givers are a gift from above!

Your family will be in our prayers. God's blessings to all of you.

Mary Jane

Linda said...

hello Adrienne. I am thinking of you from a distance. I don't have any personal faith, but I hope my good wishes are tangible. That was obviously a big transition for you to make, and at a stage in my Dad's life where carers are involved I appreciate the guilt about separating the emotional from the physical caregiving. But I hope and expect it will ease things for both of you.

Kerri said...

Always praying for you and your family.