I don’t have any answers.

Well, I have thought about writing, and even written a few times in my head but it’s never quite made it to the keyboard so here I am.

End of June I returned to NC and then back to AK on July 4th. There have been two more trips to the ER since then. Mom is basically a hot potato no one knows what to do with. She doesn’t want to go to the hospital, no procedures, no tests no nothing. Brighton Beach has to send her to the hospital when medically needed, such as an increased heart rate ( we are talking really high here 150 range… ) One solution, transition to hospice care.

I managed to spend July and August in AK and returned to NC for the start of September. Honestly I was dreading the trip but I know I needed to come. Oxygen deliveries continue to be a challenge. Every call with mom is a litany of complaints. She knows better about everything and this includes the Drs, hospital staff, Brighton Beach staff… and me. No one moves fast enough, does enough or is competent. She is miserable and she wants to go home. “Just let me go home and die” and ” I want to go to sleep and never wake up” are a couple of regular phrases that have come up over and over and this is nothing new, it is only more frequent ( near daily ) and finally she has voiced this to someone other than me at Brighton Beach. Of course they called concerned and I was basically like yes… that is pretty normal.

My mother has always been a special bird we’ll say. I have coddled her in a way by placating her ridiculous ways and following her “Linda Laws” – something is because she has decided it so and there is no proving otherwise. She knows best after all.

I haven’t shared this digital journal out because I am sure someone will tell her about it or read something they don’t agree with. I really don’t give a shit anymore….I have hit the wall. This week alone I have been shouted at, heard I want to die leave me alone repeatedly, questioned about every detail of everything and rolls of the eyes when I don’t have the answer she wants, accused of locking her away and spending all her money and other niceties. I’m tired…not one a sleep will fix. A tired that has permeated my body in a way that it takes every ounce of my will to get through the day. I feel beat down and raked over the coals. My life continues to be held together by a thread. I am taking whatever work I can get to piece it all together between managing mom’s life and my own. I am not writing this for sympathy it is my reality at the moment. There will be a day when it is over. She will get her wish. I hope she finds some peace then.

We went to a heart specialist. He couldn’t do the test because she was so wound up her heart rate was off the charts. She had a 10am appt. she was up at 3am, calling me by 6am, worried herself silly over being on time, getting there, the test itself and she had a whole narrative in her head how it was going to go and wouldn’t hear otherwise until she was so worked up they couldn’t do it. I felt seen. The office staff and Dr were wonderful. They recognized the level of anxiety I was working with and treated her with kindness. She had an accident in the office because she no longer has control over her functions in that area really…but she had packed a whole bag with two changes of clothes, pull ups, a bottle of water and a whole giant box of tissues along with her purse. Baggage. We all have it. But she entered that office like the bag lady of Boston and gave the full range of experience….on display for all to see. It must be frustrating and humiliating and all the things but the ONE thing is she certainly doesn’t help herself. She cannot relax or shut off her mind. She is worried about things that are happening months down the road. The insurance renewals, the house, the car, the health insurance claims, the dog, the dr. appt, the speck of dust on the floor, all of it. The heart dr. talked to her and was the first dr. to talk to her about the mind and body and how they work together. He wanted her to figure out how to quiet her mind – meditation, praying, music… something, anything. She nodded her head as she does and when we left she basically called him a crackpot. She doesn’t believe in any of it.

We followed that appointment with two more. The last dr. now wants to do that test and so tomorrow we will go. In the meantime we’ve been discussing hospice and how it can bring some comfort and support to her, me and the facility. I know many people think death when they hear hospice and it is all big and scary but mom is pragmatic and so am I. We have never shied away from the hard conversations and that is one of the reasons I know how much she hates all of what is happening to her. Wouldn’t it be easier if we died peacefully in the night or, for those daredevils, doing something you love in a beautiful place…quick and painless. But that is not how life goes. And here we are.

So today we met with hospice and mom had a very set in her mind way that it is all supposed to work and that isn’t reality but it is to her. The discussions ended and we were at an impasse. We will go to the test tomorrow and then we will talk again is where we left it. The lady was lovely and so very patient but at the end of the conversation although mom is qualified for hospice care she wasn’t hearing from mom that she was ready for that decision. On one hand she doesn’t want further treatment, go to the hospital or have any procedures. On the other hand she doesn’t understand why they have to send her to the hospital ( it’s the law ) and why she cannot come home and be on her own, she’s fine according to her. I hate this for her. I hate all of it. I am trying to navigate making the best decisions with her ( she is still cognizant to make her own decisions ) while managing her expectations, reality and her perception of how things should work. & that leaves me here…. I don’t have any answers. That should be the title of my Ted Talk.

I’ll try to journal more often… but I am not making any promises.