The Return of Hospice

wpid-img_20140905_191738.jpgToday, for two hours, I signed papers for the restart of hospice for Mom. She has been off of it for two months but the nurses feel that we should restart it again. She is not eating very much, has had three falls in the last few weeks, not verbalizing as much and has lost a few pounds. The spark is slowly fading.

I met the hospice intake nurse in a quiet back room, telling her about Mom. Her name is Chris and she is gentle and very kind. She has heard about Mom from her last hospice term. I hope I am that understanding and gentle when I open my own nursing cases. We discuss starting massage and music therapy for Mom. We didn’t utilize that before and I want someone to rub her back, like she always requests from me. We also get to have Cathy again, Mom’s primary hospice nurse.

On the first admission, I was not emotional. It was something that needed to be done quickly and I guess I didn’t have time to process the whole thing. Today when I arrived, I went to see Mom first and she is sound asleep on the bed and very pale. She doesn’t respond to my voice, she is in such a deep, sound sleep. I return to see Chris and start the paperwork.  I’m listening to her but I can feel the warm tears slowly start. I’m embarrassed that I start to cry in front of her but I have also watched the same thing with family on my own case opens. I’m not sure, but for some reason today is different from the last open with hospice in September.

A few months ago, a woman I respect greatly, told me that its ok to tell your Mom that she can go. I completely understand what she is saying but those are hard words to say. For seven years, since my Dad has been gone, I have taken care of her. I have grocery shopped in my small town, set up meds monthly, fought incorrect bills, paid bills, moved her twice, bought her clothes when she has lost weight, taken her on trips, yelled at people for her and loved her. How do you tell someone you love that its ok to stop living? I’ve thought about that conversation a lot.

When we were done with the paperwork Chris and I return to her room. She is in the same exact position. Curled up in a ball. She is wearing my old sweater that she loves, she has a huge hole in her nylon, crazy hair and blue puppy in her arms. She refuses to open up her eyes, even when I kneel down beside her. I introduce her to Chris and let her know what she is doing. Listening to her lungs, checking her feet  and looking at her swollen leg. In the middle of her assessment, still with her eyes closed, she states…

“I think I love you.”

We both start to laugh and I tell her, “I think I love you too!” She says she doesn’t hurt anywhere and she is very loving with Chris, repeating thank you, all with her eyes shut.

If I could show you what this disease is about, today would be the perfect day. The feeling of uncertainty, loss and grief mixed in with a whole lot of love for a woman who doesn’t want to open her eyes today.

As I was driving home, I was thinking about a book I read a few months ago about a woman with ALS. She wrote about the song in Wicked that described her relationship with her daughter. It’s called For Good and I thought of Mom.

It well may be

That we will never meet again

In this lifetime,

So let me say before we part

So much of me

Is made from what I learned from you

You’ll be with me

Like a hand print on my heart.

Day 1 of the second round of hospice and her 89th birthday is this Sunday.


The Road Trip Home

It is a beautiful day today in Minneapolis. The brown grass is disappearing, the buds are blooming and the air has such a sweet smell. Winter is over (I hope) and Spring has arrived.

My Mom’s birthday is next weekend, April 26th, and I have been thinking of what I can do for her birthday. Eighty nine long years, though today she denied she was going to be that old. I have been thinking about taking her on a ride in my car. She has not been out since October and I can hardly imagine being cooped up somewhere for six months.

Not getting her out has been hard for me. I have wanted to but there have been many factors to consider. She hates being cold, her transfers are getting more difficult and she is not the same as she was six months ago. I want her to smell the fresh air, see the beauty she has been missing and see the places she has called home.

“I want to go home!”  “I want to go home!”  “I want to go home!” She continues to repeat.

For the past year, she has repeated that statement. I know that to her, home is where she wants to be. As I have stated before, I’m not sure where home is. The red house in Crystal? The brick house by our own home in Plymouth? Her home in Starbuck or her home in Howard Lake? Home is where she wants to be.

Thinking of what I can give her, I have decided to give her a road trip home. The many places in Minneapolis that I think is home to her. For obvious reasons, I could not bring her to Starbuck or Howard Lake or even the place they lived in, near downtown Minneapolis. I’m not 100% sure that home is still there and the neighborhood has changed, if you know what I mean.

I wasn’t sure if today would be a good day for her, but in all reality, everyday is tough for her. I met my Mom’s sister, her brother and my cousin Bart at Clare Bridge. It was nice to see them and she had to get to bed, though I asked her if she wanted to go for a drive with us and she said, “Ok, that sounds nice!” I didn’t let her change her mind.

So the following is our road trip today. I’d like to thank my co-pilot Sophia and Allan who helped me with the transfer getting her into the car, which was a little tricky.

wpid-2015-04-18-15.02.33.jpg.jpegMy daughter Sophia and our co-pilot in the car.

wpid-20150418_133635.jpgWe stopped at her sisters house. Pictured is her sister Gloria, brother Bud and cousin Bart.

wpid-20150418_134141.jpgThis house in Crystal used to be painted red, she talks about this house often.

wpid-20150418_135210.jpgThis is the house one block from our own house. The man who lived there was very gracious about letting us take a picture. The is the first house that Ross and I lived in when we were first adopted. They built the house in 1964. Soon after, the moved to Starbuck in 1970.

wpid-20150418_135612.jpgVisiting our own home, where she would stay with us. Many wonderful memories spent with her here. I felt so bad she could not go in.

wpid-20150418_131942.jpgShe slept a little but for the most part, was wide awake.

wpid-20150418_135817.jpgThe road trip crew…

Driving back to her home, I kept thinking that this maybe the last road trip we take. The staff have asked if I am ok with her returning to hospice care. She is not eating really well, sleeps much of the day now and is much quieter. I will call them this coming week and give my ok again. Round two with hospice.

I know she will not remember today but I will remember we talked about her past home and how she noted the color red of the Arby’s sign. She commented that there are a bunch of blue cars and that she noticed the wind against her face. If she can’t ever get in the car again, I’m just fine with that.

wpid-20150418_142423.jpgWe arrived safe and sound. Blue Dog did pretty well too.


The Ambiguous Loss

I want to share with you that these stories are hard to write. Really, really hard sometimes. It is a quick overview of our days, weeks and months with this disease. Our rollercoaster continues and this month has been no different but for some reason, this month has been harder.

I will share with you the good things first. My brother came to visit her.


The week before he came, I was feeding her lunch and she turned to me and stated, “Is Ross alright?” I was surprised because it was totally out of the blue. I answered that he was just fine. I didn’t want to share with her that he was coming this weekend because I knew she wouldn’t remember. I didn’t want her disappointed if he couldn’t come. She has been asking about him, more so recently.  He hasn’t seen her for a while.

When he arrived, the first thing she asked, “Have you been lost?” I wish I could describe to you how alert she was which I was very thankful for. She was tracking well, funny, patting his leg and told him that he needed to shave. I know you are not going to believe this but not once did she say that she wanted to die or that she had to get to bed, as she frequently tells me.

Not one time.

I was telling a friend that I think she must be bored with me. Every single day when I visit, I get the same two sentences. Death and her bed. I am thankful that she was so alert for his visit. She has been asking about him and I told her that he will come back and visit.

It is difficult with loss and grief. She is still our mother but not in the same way. Ambiguous loss is different from the loss and grief of death because our closure is not possible and our grief cannot be fully resolved while she is still living. I think that this loss complicates my own grief with her. The person we knew before is behind us and the person in front of us is now our mother. Funny, confused, kind, scared, coffee obsessed and always loving.

The not so great things…

She has fallen twice. The staff put her on the couch to get her out of the wheelchair and they think she either fell off or got up to walk, which she is unable to. The second was she was trying to reach her Snicker’s from her bed and fell right on out. I had a message to move the Snicker’s. Yes, its ok to laugh. She didn’t get hurt.

There is talk of her getting a hospital bed. I have mixed feelings about that, just like the wheelchair.

Her blue dog is missing and she is mad at her baby and won’t hold it. I don’t know what to do.

Easter was not a good day for her. It’s her favorite holiday and she was tired, leaning in her chair and physically looked awful. The only funny part was when I told Mom that Steve, my husband, whom she has always adored, was here too and she looked at me and said, “Where did you find him?” Sometimes, she cracks us up.

Today, she is really sick. I fed her a little bit of lunch and she was not interested in the food. She just wanted to die and then she threw up. We put her to bed and she has the shakes. The aide taking such good care of her. I asked her if she knew her birthday was coming up and she stated, “April 26th”.  That should go under the good section. She is correct.