The Gifts and The Signs

I wanted to share with you that for the past several weeks, I continue to receive the most thoughtful gifts from friends. Its been a short two months and life continues to move on. I was talking with my friend Leanne and we both agreed that receiving cards and gifts months after your loved one has gone, is really wonderful. Don’t every worry about being late with cards or gifts, I know I just finally got a card into the mail for someone. Everyone is busy. Just to know that people care is what is important.

People are, without a doubt, thoughtful. Here are just a few gifts that have touched my heart in the past few weeks.

wpid-20150705_120053.jpgMy friend Rich, sent me Forget Me Not seeds, which are significant with The Alzheimer’s Association. Rich, you are a gem and the kindest person I know.

wpid-img_20150703_112234.jpgMy friend Anne, made this for me. She captured my Mom perfectly and it sits by her picture. I LOVE it. You are the best, Anne.

wpid-20150705_120550.jpgMy friends, Jim and Cristy sent me chimes. I love how they fit into my garden and they sit very close to Mom’s bird feeder. When a storm blew in last week, I could hear the beautiful music in the middle of the night. They also sent me a beautiful card that sits on my desk.

wpid-20150705_120654.jpgMy stone marker from my co-workers sits right by Mom’s bird feeder. Its incredibly special and I love that bird seed spills out on it. My Mom would have loved this. I’m blessed to have a great nursing family.

I think that when anyone loses a loved one, I think it is normal to look for signs. The other day, someone was asking me if I felt Mom around me. I do, but in subtle ways.

When I was assessing a client at a rehab in Bloomington, there was a storm warning while I was there. Staff needed to move all the residents in the hallway and to keep them from being scared, the activity aide started to play her guitar. The first song she played was Edelweiss from the Sound of Music. This was one of my mom’s favorite songs and when Mom was dying the music therapist played this for her on the guitar and I taped it, hoping she would sing it. She only listened to the music. I know how much she loved music.

One of the other signs is her bird feeder, sitting in our garden, right outside our sunroom. There is a yellow finch that comes and goes, along with other birds. I’m sure it isn’t the same bird that visited my Mom’s room the day she was dying but I would like to think so. Steve states it is a male, due to the bright colors. He comes and goes, while I have been watching him, just like my mom watched the birds in her memory care unit. Here is the bird. Correct me if you know what kind of bird this is.

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It’s hard not to think about her. I still get mail for her, almost every day. I’m working on finishing the thank you cards and trying to figure how to honor Mom with the money people have sent me. I know I talked about getting a bench in her memory.

The feeling of grief is still there. I sometimes wonder if I should be so sad about a woman who really wanted to die at 89 and her life becoming so different from it used to be. When you think about a mother who has suddenly lost her young child or a woman who lost her sister or even a man who lost his dog.  Its sudden and unexpected. I was prepared for Mom’s death but I still am unprepared for the void of her. My friend Mary reminds me that I was with my Mom for forty-five years and some people do not get to experience their loved one for that long. She is correct.

We all feel grief and in all of our situations, we are tied together by loss. It doesn’t matter what the loss is and I’m not going to compare anymore. Loss is loss.

I hope the signs continue.

Jodi

The Cupcakes

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It’s been a beautiful day in Minneapolis. Sunny and warm with beautiful, wispy clouds in the sky. I love days like this. Today, I’m on a mission with my girls.

It’s now been six weeks since Mom has been gone. I’ve been working on thank you’s and thinking of ways to honor Mom with the donations. I have lots of ideas, nothing concrete yet. I’m in awe of all the kind words you have shared with me in the cards.

There is not one day that goes by, that I don’t miss her or think of her.

She was very lucky to have such good care and I wanted to give Clare Bridge something from our family. What do you give them that can convey your thanks? For almost three years, they have taken care of my loved one. Good days, hard days, sad days, slap happy days, mixed up days, scared days, alert days (somewhat) and loving days.

Their days aren’t always easy, I have talked about this before and my own history working in a memory care unit for four years. I know that they work very hard and maybe don’t get the recognition that they should. Many of them were very special to Mom.

The girls and I decide to get Gigi’s cupcakes today. It seems such a simple and lame gift to give but I know my Mom loved sweets and would be happy to know we bought them as a thank you.

I haven’t been back for five weeks and it was very difficult to return. People are so kind and everything is the same. I saw Mom’s hairdresser and we talked about how excited she was to get her hair done, the week of her birthday. She talked about how alert she was. We received hugs from everyone and got to see Jean, my Mom’s roommate across from her.

It was not always about Mom but a social factor for me too. I like the staff, I know the residents and it was such a part of my week and routine. I wasn’t a nurse in a facility but a daughter. I liked that. The only thing missing was my sweet Mom.

I might by back, I’m not sure. I drive by almost every week because I have Client’s very close. It’s so strange to drive  by and not stop.

Thank you to all the people who take care of our loved ones. Thank you to all the families who take care of their own loved ones at home, who work just as hard. Lastly, thank you to anyone who takes care of a person with memory loss, or any disease for that matter. Days and nights can seem so long sometimes. You make a difference, even though you may need a reminder. Even if it’s a simple cupcake.

Jodi

The Grief and The Gratitude

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Perhaps they are not stars in the sky but rather openings where the love of our lost ones shines down to let us know, they are happy. -Eskimo proverb

I’m up early again, the breeze is coming through the window, Barley has had his treat and everyone is still sleeping. It is a quiet time for me to write. Its been thirty days since my Mom has been gone. One full month. This is the longest period of time I haven’t seen her since my Dad died, almost eight years ago. The void of her has been hard.

Grief is a tricky thing. Just when I think that I am doing ok, I see or hear something that reminds me of a memory. It ebbs and flows through me and it seems to be almost constant right now.

Grief seems to be all around, with friends also experiencing this shadow of pain. I have friends with a new loss of their Dad and sister. I have a friend who lost their family home. I have friends in the hospital and client’s families trying to work through their own grief over their loved one. Grief really does not discriminate.

Yesterday, I was at an assisted living building completing a medication change. I wanted to get in quickly and leave but when I was entering the building, I stopped to watch a daughter trying to get her mother in the car. I watched for a while because I noticed she was having a hard time getting her in. I noticed the loving care she was providing and my own thoughts went to my Mom’s car ride, only six short weeks ago. I completed the medication change and was teary in my car. I miss the simple act of getting her in the car.

I think part of my grief ties in with gratitude. I have been simply overwhelmed with gratitude from my family, friends, neighbors, strangers through my blog and clients and their families. Who knew my 89-year-old mother touched so many lives. I wish my mom could have known the generosity of people in the past month.

Since her death, I could not begin to tell you how many people have helped. It was almost like a revolving door at our house with people bringing over food. Really, really good food. My eleven year old daughter, Sophia, told me, “So when people die, you bring people food? I hope this never ends!” Thank you for all the food you have brought so we didn’t have to cook.

I have received food baskets in the mail, along with chocolate dipped strawberries. I received a book in the mail from my friend Lisa, in California, that was called H is for Hawk, about death and hawks. (I cried like a baby when I got it). I have received beautiful wind chimes that play a soft melody in the breeze. My work gave me a beautiful stone that I can put in my garden, along with time off and loads of food. Also, a special thank you to my friend Joanie. We forgot our dresses for the funeral in our garage (yes, I know) and she drove to St. Cloud to deliver them the day of the wake. Bless her.

And the cards…I have finally read all of them, plus I am still getting them in the mail. I hope you realize, it will  take me one year to thank you all. I know Emme counted them as a project, as there are over 400 people to thank. Yes, 400.

She was a blessing.

There are times in the grief and gratitude that I feel her around me. I don’t want to sound crazy but I will tell you I really do feel her presence. For the first week she was gone, I kept waking up at 4:20 AM, the time she passed away. I’m not sure if it was conscience or not, but it started to be really annoying. Plus, those that know me know I’m not an early bird.

A couple of days afterwards, I had to run to Macy’s to grab Steve a new shirt for his suit. There was the sweetest woman helping me, I was in a hurry to get other things done. We found a shirt fairly quickly and we got to the register and there was a line. She let me in first, explaining to the line that she had been helping me and it would take a minute. In the line, there was an older woman. Hair perfectly done, Burberry rain jacket and a cloud of perfume. She was angry and stated, “Well, we really don’t have a choice, do we.” I was quiet for a while, now feeling bad that the Macy’s person helped me first. I softly said, “I’m sorry, my Mom just passed away and we are heading out-of-town.” Her response was, “Well, that’s too bad!” still in an angry voice. By this time, I’m upset. What I really wanted to say to her was almost out of my mouth. Really bad things that are not my normal. But for some reason, words popped in my head, along with the bad words. Take the high road. It was my mother telling me that its ok, not everyone is kind and understanding. I walked away, taking the high road. But if you know this woman, maybe remind her that she may be in the same situation some day.

I also feel her around me when I watch the birds at her bird feeder. We put the feeder in my garden, right outside our sunroom. I have been watching the birds joyfully feed and think of my Mom watching her own birds at the memory care unit. I think birds have become more meaningful for me, thinking about that one bird, knocking on Mom’s window waiting to fly with her. Hospice sent me a beautiful card this week, with all the staff signing it. Kind and special words spoken about my Mom and I. On the outside of the card was this…

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There is that bird that came to the window.

When I was putting away some of her things, I also noted some things that she had written on a piece of paper. For the last few years, she had a difficult time remembering my birthday. She would always ask and a few times, I could tell she was writing it down. While putting away some pictures, I found this…

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I know she is around me. Gosh, I miss her love. I hope she knows that both Blue Dogs are very loved and that I made her rhubarb dessert this week. I hope she knows that Sophia got a special award at school this week and that Emme proudly made it to second grade. I hope she knows that I drive past Clare Bridge every week, because we have two clients near there and it hard to know she isn’t there any more and I drive right on by. The hardest day for me was cleaning out her room. All of her memories and stuff, hospital bed long gone. I took this last picture, were you can see the view she saw for almost three years. The birdfeeder visible, along with the bench we frequently sat on and talked about life.

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The days, weeks and months will continue and I know that she is where she wants to be. Grief and gratitude will also continue but hopefully one of them slowly fades.

Jodi

The End

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I am up early on this Saturday morning. I can hear the birds talking and can see the beautiful sky slowing waking up. I can’t sleep. Sleep has been my enemy this past week and I can feel that I am exhausted while I type this.

Early Wednesday morning, my Mom left this world. 4:20 am to be exact. I’m now up at this time and I feel she is shoving me out of bed. I feel she wants me to write but I’m not sure quite what she wants me to say. I will do my best.

For the past year she has wanted to die. This is a fact she has repeated over and over again along with wanting to go to bed. She has asked me this questions in the car, in her bed, on the toilet, watching the birds and at meal time. Sometimes she looks at me to say, “Hey, I’m talking to you. Yes, you!”. I’ve talked about this conflict in past stories.

Last Wednesday, she was not feeling good. She was sick at dinner, refusing her medications and getting weaker. Friday, Cathy the nurse, talked about starting a little Morphine for her but I wanted to use Tylenol first. I don’t think she has ever had Morphine before and I was worried it would sedate her too much and if the Tylenol helped, lets start with that.

Saturday came and I was really worried about her. We had taken her off her Aspirin and I was worried she had a small stroke since she was leaning so much. We couldn’t get her to eat much and her head was tipped down so it made it hard to feed her. We were having a birthday party for her on Sunday since most of the family could not see her on her actual birthday. I called the family to update them and hope that everyone could come.

On Sunday, we got her out of her beloved bed and put her in a tip back chair so we could attempt to feed her. Most of her family came and we sat in a lovely courtyard with the birds flying overhead and the breeze on her face. She would wake up every once in a while and I would tell her who was there. It’s the last time she also had her beloved coffee, only taking small sips. It was nice to spend this time with her, along with her family.

On Monday, I knew that it was serious. I found her in bed with my bright shirt on, hair neatly combed and she looked like the bed could swallow her up. Her mouth dry and we worked on getting small sips in her. Through out the day, she kept trying to tell me something. I could tell she was frustrated that I didn’t understand her. At the end of the sentence, what came out clear was…I love you. A little garbled but I got it. Over and over again.

I had a special moment with one of mom’s aides when she told me that Mom was her favorite. She said that they didn’t hit it off at first but that they grew to love one another and spar back and forth. We had so many people checking on us. My Pastor Beth came to see her and gave her a blessing and anointed her. That was a very meaningful moment since her faith has been so important to her. I left about 9 PM, telling her what was in my heart and not expecting her to be alive much longer. When I left, she just patted my left cheek, the same one that I had dreamt about last week.

When you are a nurse, you are the one to get the call that a Client has died and its so difficult making that call to let family know of their loved ones death. All night, I kept listening for the phone to ring. It didn’t.

Tuesday, I got my kids to school and headed over there right away. When I arrived, a male volunteer was holding her hand. He really loved my Mom and he came in early, before work, to say goodbye. He liked to call her Mean Jean. It was a very touching moment.

Mom was now not able to talk. We had started a small amount of Morphine for her to keep her comfortable. When I would say the word “Mom”, her eyes would flutter. What an important word for her. Mom.

It’s hard to express how kind people were. We had a busy day of people coming and going. The nurse, the social worker, massage therapy, music therapy and two Pastors that again blessed and anointed her. I love that she was blessed twice. The room smelled of oil and lavender. I swear a bird came to the window and knocked as if to say, “Hey, I’ll fly with you when you are ready.”

When I left on Tuesday, I was exhausted. My enemy, sleep, was winning. I had fallen asleep twice in her chair and tried to lay by her side but the bed was too small. They traded out her normal bed for the hospital bed. All those months of crawling in with her, I could only sit by her on the bed.

When I left her, I knew. I knew that she wanted to die without me there. I told her she could go and that her job here, was done.

My phone rang at 4:20 am and she was gone. Her soul at peace.

As you go about your days and weeks, remember my Mom when you see or smell:

Lilacs. We had them on the farm and she loved to put them in a pretty vase.

Fresh brewed coffee. Black, as it should be.

A Snicker bar. You can have more than one, my Mom says its ok.

A rhubarb plant or stalks. I think she would love if you made some for me!

A child’s laugh. She loved kids to the moon and back.

A Dairy Queen. Boy, did she love our hometown DQ. A small cone or if she was really crazy, a Snicker’s Blizzard.

Lemon Bars. I made her recipe yesterday and it filled the house of her memory..

A choir singing. Picture her humming along.

Any kind of book. She taught me that the best escape is a book.

Finally, do some random act of kindness. She was all about helping her family and friends.

Thank you for all of your sweet messages via FB, email, texts and calls. I only can read a few at a time. Your words are important in getting me through. One of my friends said, “You loved her well”. I love that. We both loved one another well.

Jodi

The end of hospice.

The Kiss

In the past few days, Mom has started to decline. She has been refusing medication, doesn’t want to eat and has been sick after meals. Her hospice nurse called me yesterday while I was working and we talked about adding/stopping medications and overall keeping her comfortable. I had nursing visits, along with baseball practice for the girls so I couldn’t get up there right away but they assured me she was resting peacefully.

Last Thursday morning, I had a dream about Mom. It was the kind of dream you have right when you are about to get up for the day. In the dream, she sat down by my side of the bed and kissed my left cheek a few times. I remember how vivid the dream was. She had gray hair, vs her stark white hair and she had her older glasses on. I could even see the numerous books on my nightstand. I felt like she was right in my room and I woke myself thinking…how did she get in here? I told Steve about the dream yesterday and it being so real, I felt I could touch her.

Today, we have opening baseball for the girls and we are trying to figure out our schedules and my priority is to see Mom. Emme, my six year old, has a gold heart on her dresser and I asked her if I could have it.

No.

I told her I was going to give it to Grandma today when I sat with her. Since I was giving it to Grandma, she was fine with that. “Grandma can have it!” So I gave Mom the gold heart and it sits by her bed.

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I am so happy that in the past month she got to see my brother Ross, went for a car ride, felt the wind on her face, got a quick glimmer of “home” and celebrated her 89th birthday. I have enjoyed every minute that I have spent with her and I know my Dad is waiting. I am also grateful for the staff that take care of her with such love.

Before I left, we were sitting in the warm sunshine outside the patio. We could hear the birds sing, see the plants sprouting and could smell the fresh air of Spring. She is also asking for her Momma and I tell her what a good Mom she has been. She looked at me with one eye open and I know she heard me. What a good Momma, indeed.

Jodi

Day #9 of her second round of hospice.

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.

Jodi

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.

Jodi

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.

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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.

Jodi

 

The Weep

Its a beautiful day today and the girls and I decided to bring Grandma some Snickers and a few other things for her. We arrive and find her sleeping in her chair. The girls have never been known to be really quiet and I think we woke her up out of a deep sleep. She is disjointed and trying to tell me something, “That shouldn’t happen!” I can’t understand what she is trying to tell me, only that she is worried about something I can’t figure out.

We give her a banana and she is worried we don’t have anything to eat and she keeps giving me the banana back. I tell her its ok, that we just ate lunch. Again, I can tell she is worried and sad. The girls decide to read to her out of the devotion book. It normally is a comfort, but not today.

I try to help the staff when I can, but the girls are with me and I know she needs to go to the bathroom. I help the kind, older man who is her aide, walk Mom to the bathroom and she keeps telling me, “Thank you, Thank you”. The both of us walk her back to bed and she starts to weep. I’m not sure if I hurt her walking or getting her into bed. She is incredibly afraid of something that she can not articulate. I haven’t seen her cry since September, when she had her stroke and knew something was wrong with her. Its very difficult to see your mother cry and knowing that she is fearful of something I can’t help her with. I again ask her a few questions and I can tell the aide is uncomfortable and does not know how to help. She has been weepy for most of the afternoon, he reports.

I decided to go get her some coffee and return to find my girls trying to help her. I think it is also hard for them to see Grandma cry. This is how I found them.

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I love that they are trying to help and that she is holding Sophia’s hand. She is calmer and less anxious. Over and over she says to me…I love you. I love you.

I wish I knew what she wanted to say. Sometimes its a guessing game and I get lucky. Sometimes she just repeats what I’ve just said. Today, I wish I knew what her fear was all about and what made her cry. She is very different in behavior today than she normally is.

I know that on each and every post I write, I try and find the lesson that I am supposed to learn. I know its there. Should I be more patient? Can she see my own fear? What happens if she sees me cry?

Today, I’m not sure what the lesson is. Only that fear and tears make me sad for her.

Jodi

The Hospice End

On Thursday of this week, I met with our wonderful hospice nurse, Cathy. I had been prepped last week that Mom would not qualify for hospice any more. I know the rules have become much tighter regarding who can stay on the program and you must be actively dying to be on it. I understand it, but to be honest, a part of me is happy and sad all at the same time.

Actively dying is such a funny term we nurses use. I think we are all actively dying to some extent but some of us are really, really dying. Like today. Mom has not lost any weight, has been feeding herself (!) as of late and just keeps holding her own. With the highs and lows of this year, I can hardly believe she is still here. She is a wonder.

The wonder of her going off of hospice is, that I still have her. I still get to see her, hold her hand and just love her. That part of me is overjoyed. Almost like we jumped a high hurdle and made it. Success. We beat the odds and I know how rare it is to go off of hospice. In all my years of nursing, I would guess I have had five people discharged from hospice. They just weren’t ready to leave this world.

The hard part of her going off of hospice is that she is still here. I can hear my Dad somewhere yelling “BOOOOOOO!” I know he is patiently waiting for her, along with all of the friends she has lost. She sits in her chair and states every day that she wants to die. Every single day. I know it, I feel it and I understand it.

It’s not that I want her to go, please don’t misunderstand. I’ve spent all of these years with her and watched what an amazing life she has led. She will be eighty-nine in April and has graced this earth with all of her being. She’s made an impact. She has loved to love.

But as a nurse and a daughter, its hard for me to watch her. Slow, weak, disjointed at times, foggy, displaced, sad and overwhelmed with her life. She is not who she used to be and even with her confusion, she is justified in wanting to die. I can’t bring her back to where she was ten-years ago, but I can be with her and peacefully get to the end. It just isn’t going to be right now.

There is hardly a week that goes by that I don’t think of loss.

Over the past two weeks, my mom’s roommate has died, along with the loss of four Client’s plus someone important in our office. Even my favorite Parkinson’s patient had to put his beloved dog to sleep last week. This dog had been very important to him, 15 years of love and companionship. We have watched the dog suffer over the last few months and its been hard for him. I sat with him the day before and he was struggling. He said, “I’m the only one who wants him to live, none of my family wants to keep him alive.” I reminded him that not being able to get up any more is not living. The dog was helpful in getting him through sobriety and had a purpose. He was a very loved dog. I have heard before that we treat our pets much better than we do humans. Somewhere that all connects with Mom.

So on we go with the days, weeks and months. The paperwork will return and I will continue my fight with Hennepin County and the hours spent figuring out her medical assistance and waiver status. Last Wednesday I was on the phone with them for two hours, including hold time. Crazy system.

She was on hospice for officially 171 days and we continue to live. ❤

Jodi