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.

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