June 2, 2014

Mom is gone: May 23 2014.  I can tell you many things now a week later, and one is: at the first sign of their decline start taking care of yourself. If you have a weak link, and we all do, shore that up immediately. Even though I knew she was going, and had lost her mentally 18 months ago, the shock of her not being in this world is tremendous. It’s good actually, and that will sound strange to many of you, and it’s another entirely long story but briefly, we did not have a healthy relationship. Many mothers and daughters do not, but mine was not good because of my parents’ divorce when I was 10. She latched on to me and made me her “companion” and lived my life. So now I am free. Free finally at last to have my own life and to devote my time to my husband. He has been amazing. All these years of putting up with my ties to her. It was a sick dance but I learned it at 10 from my teacher/mother and it was the only way I knew to live my life.

I find each day that I am still off kilter. The world as I knew it for 52 years has changed. 

May 22, 2014

Mom has started her journey out of this world. It began on Tuesday May 20th; fortunately I was there to take her laundry in and observed someone working on her behind the privacy curtain. I was quite and listened and heard this woman being really gentle and kind to my mom. It was wonderful. She was giving her a bed bath and talking to her with respect and kindness. WOW! That was great to hear. To know that someone who’s “job” it was to care for her was being really kind and caring was a great joy to me.  I hung up her clothes and waited until they were finished and then went in to see mom. Caroline said “something is not right with her today”. So this is when it started. Caroline notified the staff at the skilled nursing facility and texted the hospice nurse. Everyone was there right away tending to mom. They determined that she was failing and started medication her so that she had no pain.  Her symptoms are that her respiration rate is decreased and her cognition is very low. I was able to see her eyes one more time and ask her where it hurts and then for the past 2 days I have only watched her slowly decline. The body’s ability to hang on is amazing.

The Chaplain came and we all surrounded her bed and prayed and we talked to her about going on and leaving this crappy old body behind and off to see our loved ones that have already passed, etc. But she is going to get all the mileage out of this old car to the very last second…..

August 27, 2013

I go and see mom several times a week now. It used to be everyday, but now I get it...I can't keep my sanity and do that anymore. Today's visit was looking good: she was awake and alert at 2:40 PM and looked bright eyed. We had a few words of conversation and they seemed to even make sense. She was watching me hang up her freshly laundered clothes in the closet and asking if there were enough hangers. what? nice? rational thoughts.

Then it went down hill as it always does sooner or later. She started telling me all about what she had been doing and who was coming (the tax man). All of her tales were fabricated and I just went along with them. It's all she has.

I had to leave as we get in this indecisive place of no return and it just hurts too bad to stay and participate. I am weak I guess, but I just feel so helpless and useless to a point that I need to leave to not feel terrible. IF I were making some kind of difference, then I could manage to stay, but it's not productive and she gets frustrated and more confused...So I let her go back to fantasy land where things are more manageable for her.  And I come home to my reality where things are more manageable for me. 

June 20, 2013

You go day after day, month after month, and you try and try to get the best care for them and make them happy, etc. and fight the battles and nothing changes and it feels so hopeless and so futile.  You talk to all the nurses and caregivers and staff and plead and point out problems and then you call the doctor and talk it all over with him and they all agree to one thing and then nothing gets carried out. AND on top of it all the patient fucks with your head. Today is just the latest example; she said she wanted to get up so I told her to push the call button and I stayed and made sue it came on. Then when the CNA arrived they asked me “what?”. I said she told me she wants to get up. They looked at mom and mom said “Just kidding”. WTF. What an asshole. I apologized to the CNA and told mom goodbye, So the CNA started to tell me that she does this kind of shit all the time. I just put my hand up. I don’t want to hear it, I KNOW it.  I don’t want to ever go see her again. So what kind of sick, selfish, person am I? 

April 30, 2013 Tuesday

Well, mom has bed sores now, but she did get up and out of bed for the first time in weeks yesterday. She even asked for a shower!!  Today we made an agreement where she would get up every other day and then the bed sores will heal and not come back. Let’s hope she will comply.

I was sitting there with her this morning and she started telling me about the big dog that was on the bed yesterday. She said she had to call for someone to get it off of the bed. WTF? No therapy dogs ever come without their handlers…..and they would certainly remove the pet if there was any indication that a patient wanted it moved. So, I told her that and then she said it was an imaginary dog. WTF? OMG. OK……well. That’s new. 

April 24, 2013 Wednesday

I haven’t been writing everyday but that’s not because nothing is going on.  I just needed a break from the constant accounting of it all. Today on my visit to introduce Frank (spiritual counselor) to mom I felt quite a bit of relief. I finally feel that there are other people I can count on and like that will be there for my mom. The Social worker, Kelly from the new hospice met with me yesterday and she seemed genuinely interested in my mom and her needs.  The day before that we got the new doctor on board and we met him and he was wonderful. WHEW! What a great week.

I had a bit of a hard time the other day when the woman asked my mom if she had any children and she said no. I think she thinks I am her sister. I decided to not correct that, b/c things are going along just fine this way and so what? She loved her sister very much.

There has been a lot of talk about the last living brother (someone I have nothing to do with) and whether or not she wants to talk to him. She expressed seeing him in person was good but talking on the phone was not…..it’s unlikely that he is able to come visit, last I heard his heath was not good. I have offered to call him but she keeps saying no.

Anyway, I feel so much better now about the care that she is receiving and the professional people that are attending to her.  She has to continue to decline in order to stay on hospice. It’s possible that she may plateau and go off hospice for a time and then when she further declines she could be eligible again. Wait and see…..but for right now; she has a bunch of great people visiting her an taking care of her needs and I feel great about that!

April 18^th, 2013 Thursday

I got a call last night at 9:15 PM…..never a good sign, but this time it was. The nurse supervisor said she got the doctor change approved. AMAZING!

I also got a call from the Hospice nurse and we went over the schedule for home health aides and her regular visits and other offerings such as spiritual and social worker. So we’ll see how all this plays out. Today I found out from mom that she had a bath from Isabel and she likes her. Whew! That was worth the change already.  

There may have been an OT worker out today and asked mom a bunch of questions and mom seemed more coherent….at first, then she started telling me about Uncle Frisco was upstairs taking a shower. I had to tell her he is not with us any more, neither is Aunt Rene and Aunt Louise. I told her Ernest was and asked if she wanted to talk to him. She said no.