The Gladness and the Sadness

Yesterday, I found myself thinking about one of the families we take care of. This family has been difficult for me and I had an uncomfortable conversation with the daughter on Friday. As you can imagine with nursing, dysfunction is something that is a part of every case, to some extent. Part of your job is to remain neutral, not judge and to just listen, even if you feel their choices are not the choices you would make. Their families issues have stayed with me, maybe because it is the holidays and their anger is felt.

Loss and grief is hard but then you add the holidays to the mix and it can be so difficult for families. In the last few weeks, we have lost five client’s. Some unexpected, some have been ill for a while. As you can imagine, their grief is felt. If loss were an object, it would be an ugly, prickly thing that never goes away. It’s always present for some,  and felt when you get up in the morning and when you lay your head down at night.

It’s hard for me at times, getting to know them for a short period of time, seeing them at their worst and then saying goodbye. It’s always hard for me to call the family and let them know how sorry we are. Grief and loss. Two difficult words.

With grief and loss come amazing stories, and I’ll just share a few that have happened in the last few weeks.

One woman we took care of for a short while, will stay with me. She was a dancer, theatre lover, painter and giver to the max. She declined very fast. Family surrounded her and not one ounce of dysfunction. It is rare that all family members are on the same page. Comfort, love and a beautiful view of the river, her one son sang show tunes to her all night. He was close to her in bed and she quietly died with him. What a beautiful way to go. When the son told me the story, I could just picture it in my mind.

One patient died a few weeks ago. She had a naughty cat that was, shall we say, misguided. I would tease her family and her caregiver Roberta that we needed to get rid of the cat. The client also declined which was difficult for everyone, she did not linger long. After she was gone, the cat sat on her empty hospital bed. Where is her owner? Is she coming back? Who can I scratch? Pets also feel loss too.

A few days ago, a sweet, loving woman who was very ill,  told her daughter that her son was waiting in the living room for her but he had to go away for now but would be back for her tomorrow. That son that was waiting for her died last year and he was indeed waiting for her. She died on Thursday. The story was a comfort for the family and I get goose bumps writing it.

So with their loss sometimes comes hope, love and comfort. It’s a hard time of year to lose someone but just hearing their stories brings me a little comfort too. Ask any nurse, they will tell you that the holidays are a tougher time of year.

With Mom, we go through the same thing. As in the last couple of years, she and I have written a Christmas letter and we sent out forty cards. She has now been receiving so many letters and I have been hanging them up on her wall. Thank you to all of you who have sent her cards. The disease is a funny one. When I call her at night, she will tell me every single night that she got cards today. Every day is a new day and she forgets about the cards. In a way, I have to laugh. Every day she gets to start over and she gets to enjoy her cards over and over.

Christmas was an important time for her and when I saw her on Friday, she was worried about baking, the girls gifts and what she would bring. Every Christmas for my forty years, she cooked, baked, shopped and wrapped gifts. She is still in that mindset of Christmas and “doing”. Her favorite things to make at Christmas was lefse, her famous cider and her treats. I don’t miss her Russian tea cake balls, which I teased her they were the worst cookies EVER! She’d always put some in a box for me and I would give them away. There is gladness and sadness that she still gets to come to my house but most likely will not remember it the next day.

With the holiday almost here, I am aware of some of your own grief and losses. I have friends who have lost parents, brothers and sisters and even their pets. I wish your heart comfort and peace. Someone told me the other day that with grief, you can’t ever fill that hole in your heart, but what you can do is cover your heart with love to protect that sacred hole.

Peace to you, my friends…

 

 

The Girl

November was a really long month for Mom and I. Not that anything really happened or we ran into a problem. I should maybe state that it was really long for me.

This month alone I worked on:

*Getting her a handicap sticker. I’m not sure why I didn’t think of it before for our car rides. You can thank our wonderful doctor.  

*I have been (procrastinating) working on her Medicaid paperwork and to say it has been mind-boggling, is an understatement.

*Every six months I have to prove to Social Security that her SS money is going to her care. I have to fill our another form with documented proof.

*I spent two hours with a Humana rep to pick another plan for her because her original plan went away. I will never get those two hours back again.       

*The Humana rep stated that she should have been taking advantage of a health and wellness plan were she gets free pads. Huh? He also stated that her dentist appointment in February, should have been covered. Again, forms to fill out and hoping she gets $550 back.

*I spent two hours navigating the Humana site and signing her up for free supplies. Two hours.     

*Bills, Christmas cards, ordering pads, keeping up with her meds and concerns that I have overall.

I’m only sharing this information with you to show what it is like to take care of some you love with Alzheimer’s.  There are days that I worry that I have no idea what I am doing. As hard as I try, I worry about making a mistake for her. What if I don’t pick the right plan? Did I not understand that she would get free stuff every month? Why do I want to fall asleep watching this 45 minute video that Humana mandates that I watch? Please understand that I am not complaining. I would do this for her a million times over. At times, it just plain hard. Very hard.

November 7th was my birthday and it was always a special day for my parents. When I was younger and we lived on the farm, we had grand parties and invited all of our neighbors. She never missed calling me on my birthday or coming to see me. I think she loved the day more than I did.

On that day, I went to pick up some cupcakes for the staff and to have coffee with Mom. She was in the entry way and she saw me through the door and waved. She saw my cupcakes and asked why I brought them. I did something that I rarely do with a person with memory loss. I asked her a question. “Mom, what is special about November 7th?” We were walking down the hallway and I can tell she is confused. “Is it an important day for me?” I tell her its someone’s birthday. Long pause. “I wish I could tell you”.

She doesn’t remember.

I know in my logical brain that I should not be sad. She has memory loss. I think she forgot last year. I know. I know. But for some reason, this year I was sad. November 7th did not ring a bell for her. I feel guilty because I am sad and guilty because I had hope she would remember.

We get to her room and have coffee and the cupcake. I am lying on her bed and I catch her staring at me. I sometimes wonder if she really knows who I am. I can imagine in her brain, that I am “That girl”. That girl that brings her snicker bars and banana’s, makes her sign things she doesn’t know what she is signing, tells her that this is her home now and that I am her daughter. I am “that girl” that walks with her, brings her grandchildren to see her and we watch the birds together. I am not 100% sure she really knows its me, Jodi and not “that girl”.

I came to see her a few days ago and I was talking to Mickey, the activity aide. She and I used to work together twenty years ago. My Mom, out of the blue, introduced me to Mickey and called me Jodi. Wow. For that moment, I wasn’t “that girl”, I was her daughter Jodi. I remember walking out of the building smiling.

The month has had ups and downs. There are some days that I can’t make it over there because I’m tired. Really tired. I know she is being taken care of well, but there is nothing like being there and checking on her. I call her at night and I can tell again when I am “that girl”. Her voice distant and she wants to get off the phone.

I miss the days when I was Jodi to her. Here is to a better December….