Part 2 The Night She passes..

The weekend passes and I was sorry I couldn't go.  I got a call on Tuesday afternoon at my work, during the afterschool program. The nurse from the personal care home said the chaplain had been to see mother at 2 pm and she had been going downhill since then. She said she thought she ( my mother)  relaxed after the chaplain had prayed for her. She was not drinking, eating and was mostly non responsive still. This call came at 4:45. I asked if I needed to come, she said yes soon as possible. Why didn't anyone call me at 2? Why didn't my brother call me? I live two hours from where my mother was placed, had to travel through a city world renowned with the worst traffic at rush hour.  I had to try and somehow reach my mother before she passed away. I had to go home, and then headed out. I reached my mother at 6:30 through snag free traffic but dodging and weaving through rush hour traffic.  I don't remember the trip up. They had her sitting up in a chair, cleaned up almost, in her robe and with socks on, covered with a blanket. Her head was back, her mouth was gaping open and she was breathing through her mouth. The hospice nurse was there, my brother, and the nurse that owned the personal care home were there to greet me. I immediately kissed my mother and told her it was okay to go, she was tired. I sat and held her hand and applied lotion to her arms. The hospice nurse told us exactly ( so she said) what would happen in the remaining time, and how we could tell the end was near. Things just stayed the same for the first hour. Then she started to slow breathing. The nurse kept giving her some kind of drops to help her with breathing, not sure now what it was or did it help. She said it was painful to breathe that way after so long of a time. The hospice nurse said she would take one final breath and then her color would change immediately.  She assured us this was the natural way of dying. I don't want to die this way and I damn well don't want anyone watching me go this way. She did this several times, take in a deep breath and then stop... and then within the time we were told it would be over, start up with a huge intake of breath. My brother would step out to get the hospice nurse each time. By the time they got back, she would be breathing again. I moistened her lips, I held her arm, I talked to her. She finally took that last breath and her color changed after about 10 seconds, she went from natural to death pallor, now we know what it looks like, white and grey. The hospice nurse came in, checked her pulse and stepped out. My brother stepped out as well. My mother all of a sudden grimaced, her face contorted like she was in pain and it scared me. I started screaming and before someone could get back in the room, she did it again. I didn't know if she was still alive or had come back to life, it was horrifying to observe. I hope no one that reads this ever has to experience it. I was alone and it was terrifying. The nurse said yes that can happen, evidently that is one of the "parts" she had left out.  It was over. The nurse asked us to step out when we were ready and she was going to move her to her bed, clean her up a little and try and get her ready for the funeral home. We waited for a very long time for the funeral home, and I had to drive back to my house 2 hours away. I did think it would have been gracious had my brother asked me to spend the night at his house, less than 20 minutes away and with 5 bedrooms and at least one couch to spare, but no it didn't happen. I had to drive crying the 2 hours back to my home at 11:00 at night after watching my mother pass away. Once again, my brother treated me like just another person, not his only sibling.
My mother's fight with dementia was over. I am so glad that she passed away peacefully. I am so glad that she and I got to share a last I love you. I am glad my father and her are reunited, at least I get a good feeling to believe that. 
The funeral will be part 3 .. 

the end part 1

From rehab mother is sent to a personal care home. This is a place where someone has people in a home and they tend to them around the clock. It is not like assisted living. A nurse owns this home and my mother arrived on a Friday. I visited her on Sunday. The picture reflects what I found. Hospice had been called, they evaluated her on a Wednesday and decide she has definitely had a large stroke in the rehab place and because no one was paying attention, had no care. REALLY? My mother was non responsive except she was calling for Uncle Will. My mother lived with her grandmother and her son ( Uncle Will) off and on until she was sent to the orphans home after her grandmother and her father's deaths.  I am not sure why Uncle Will didn't marry, but my mother was fond of him. I had never heard her mention him in years, other than when looking at a picture.
We pull up at the personal care home, the backyard has grass knee high and the trashcans are filled with obviously dirty diapers, the smell is gross. I just do not have a good feeling about this. My daughter and I walk around the front of the house and she starts crying as we stand on the front porch and look around. She says it looks like a crack house. The outside lights are busted, the front is just horrible looking. We knock, they unlock the door and enter the house that mother is going to never leave. The smell is not good. It smells like the trashcans, only inside. I am led to my mother's room and she is in a hospital bed, the tv blaring. She is breathing through her mouth, lips pulled back, I realize at that moment she is gone from us. This is not the mother I fed chicken soup to a week ago. Her legs are pulled up, atrophied, her hands are rigid, I pull up her eyelids and her eyes are fixed. I try to bribe her into a response by saying " look there is Cody mother.." she turns her head but sees nothing. She attempts this a couple of times, but makes no response. The shade over her head is stained, the bathroom that she won't use is filthy from the roommate, the trash can full of used diapers, the bathtub dirty.  My mother has a dresser and my sister in law has thrown her shoes under her bed. REALLY? My mother will never need those shoes again. Her clothes are just haphazardly stuffed into the dresser. Her teeth are nasty, and need to be cleaned.
I finally get to talk to the nurse that owns the home on Tuesday before the evaluation and let her know mother's medical history, personal history and answer some questions she has. She says mother is quite dehydrated and we don't know what can be done, improvement is not really an option, but stabilization is what we are aiming for at this point. I talk to her quite often and she says mother has had yogurt, and some ensure, that she is taking her meds with applesauce. My brother thinks she is improving because they have her sitting up in the sun in the bed. Does he talk to her well no but she is improving he can see it. The nurse says he stays 5 minutes, what could he know. 
I am sick with a sinus infection so bad I cannot drive to see my mother. I am sick and miss work and believe that stress from work, mother and the ups and downs of this summer are getting to me. Cody going to college, me being alone it is just a lot to deal with, even if I was fooling myself it wasn't so much.
So the weekend passes... 

Another hospital stay...

Well she went back into the hospital again in August for another UTI. The nurse at the assisted living first thought she had suffered a stroke, she was non responsive, her mouth was drawn, her eyes were fixed. They did CT Scan and decided after she started screaming and yelling that she had another uti. A week in the hospital, my brother said we need to call hospice.They have decided once again perhaps she has had a stroke in the first place after reviewing the CT Scans again. DUH!   I race to the hospital she is moaning, sitting in a pile of poop, and legs over the side of the bed. She isn't eating much he said or drinking. I get her cleaned up by the aide, her lunch is sitting there on a table. " Mom you want to eat?" YES! So I start feeding her, chicken that is a little tough, rice with butter and peas mixed in, chocolate cake, chicken soup, ensure ( blah but who wouldn't think so,) mmmmmmmm on the chicken soup, another bite? YES! she was responsive the whole time. Was watching tv which she hadn't really seen in some time. Off to rehab the next day.
 The rehab center said she wasn't responsive enough to do rehab. She had left the hospital with two drugs in her system that were making her non responsive. One was a sleeping pill, and a a strong pain pill. The rehab place said she couldn't do rehab so they had to decide what to do with her once again. If she couldn't stand up and get out of bed on her own, she couldn't go back to the assisted living. So what to do... She hasn't been eating and drinking, " the rehab place really isn't very nice," then what is she doing there?
I don't understand just sticking my mother somewhere and leaving her and expecting it to work out, when we all know from experience you have to keep on those people and keep in touch and go everyday to find out exactly what might be happening or not happening. "Did you check her meds before she left the hospital?" The hospital has a habit of sending her home on things she wasn't even taking because they decided that perhaps the drugs weren't working in the hospital, but they are on the chart. 
People just don't care about the elderly. They have lived their life, they can get better or not, it is just not important to anyone really. 
except me.. 

Another Milestone

Another Milestone is about to happen, first day of school, last day of school pics. College will happen soon for us. She will be going away for at least the 1st year, but I suspect it will be the whole time. She has to live on campus the first year and I like that because she will be involved in the activities on the campus and that will help her be less homesick. And yes I anticipate her being homesick regardless of the independent front she puts on when around others. I know my sweet girl, and we are close, she will miss her house, her bed and her mama! It is so hard to believe that our time being together like before is almost over. It makes me sad, because one of my dreams always was to be a mother and a good one. I think I have done a good job, with all the adversity we have had and not that there is much compared to others, but we all have struggles at some point, any family, big or small they are ours to own. I hope she learns how to temper her temper and her opinions, she is about to be without my safety net to help her, not that I won't but it won't be the same at the end of the day to go over events and know how to do them differently next time or be proud you did the best you could. 
I will miss her and her laughter and our end of the day conversations, but I know she isn't far and won't be gone forever... yet.. 

Your mother is in the hospital!

"Your mother has been in the hospital since Thursday," said the caller on Sunday. In the hospital and no one called me? "Well we told them not to " bother" you after those last calls about doing blood work and they called you at work." How can they be bothering me to tell me that my mother had been admitted to the hospital? This call from my brother who was in South Dakota on vacation (yet again with the vacation,) came to me in while I was spending 4 days in Florida. I was going home on this Sunday but still was horribly upset that I hadn't been notified from the home she lives in until this call. I had added my name to a card that my sister in law has taped to a cabinet door in my mother's room because for some reason she doesn't think I should be added to the list of call these people!
 Early Monday morning after driving home from Florida on Sunday, I arrived at the hospital to find my mother in the middle of her " sunset syndrome" symptoms. She was folding the sheet and folding the sheet, saying she needed to get out of the hospital and go to the grocery, go to the house, just go anywhere. She clearly wasn't coherent too much other to note that she, "loved that girl over there," which was her granddaughter Cody. She had been admitted with a bad UTI and pneumonia slightly in one corner of a lung. They had been evaluating her for aspiration, thinking that she might not be swallowing correctly. She had a swallow test done several years ago and needed THICKIT added to all of her drinks. She hated it. I spoke with a social worker who was trying to set up her transportation home that day, her nurse, and the physical therapist for speech that was trying to finish her evaluation on swallowing.
Everything was cleared up, she could go home. Not with a pureed diet because frankly no one wants to eat that crap. The aide came in to take her blood pressure, mother started screaming it was burning her arm and she hit the lady on the arm 4 times with her balled up fist and then took the ladies thumb and twisted it until I could manage to pull her arm off. She then looked at me and said DAMN YOU ALL TO HELL, and shit, shit, shit, shit.  I have mentioned before my mother never cursed in her undementia lifetime. We decided she should go home in the ambulance because I was worried about getting caught in traffic and how she might react being in just a car. The ambulance didn't have windows. We all arrived back at the home and I had a nice chat with the Admin. He shook his head in agreement with everything I had to say to him and even his fingers shook. LOL... I warned him mother needed more fluids, more changes to her depends and to be cleaned up better. She only has one kidney, UTIs were bound to happen more often to her if not kept up better. I also told him they had ALWAYS BETTER CALL ME, even if they called my brother and his wife. He assured me I would be put on equal footing(???) with them and be called from now on.
Of course she was asleep when we got in her room to check on her and we left. I called my brother after he got home on Wednesday and they had talked to the home but apparently didn't feel I needed to be updated. This is an ongoing problem. 
My niece is now in town from Arizona and she has a two year old daughter Cody and I have never been invited to meet. I stipulated we wanted to meet her and spend some time with her, so we have been invited to " lunch " to meet her. Once again, my sister in law has decided how much time and where we get to sit with this little child and " get to know her."  How can you get to know a kid at a table? 
My family isn't much of a family. 

Our Visit with Mother on Sunday

Mother was sitting at her lunch table ready to eat when Cody and I walked in to see her. She looked at me, and I never speak till she recognizes me, and she looked and looked and then started sobbing. She said I haven't seen you in so long, I said yes I know. I felt really bad about this but then again I felt okay she knew me and knew it had been some time. I have been told she knows no one. But she does know me and she pushed me out of the way to see if Cody was with me and needed a hug from her. Mother was with us mostly that Sunday. She didn't want to continue eating but I persuaded her with cody and I sitting next to her. We went to her room afterwards and I polished her nails, fixed her hair, ( why must she always look like a chicken?) rubbed lotion on her arms and her back and talked to her. Most of the time she had a horrible time saying some words but she listened to what we were saying. I called her brother after convincing her she had a brother and she talked to him, but repeated over and over I haven't seen you in so long, please come to see me. He has now retired at 85 and appears to be going down hill. His daughter has said he is getting confused about things. He loves talking to Mother though, and so I insist she try and talk to him and she does. This time before I could hang up she said WHO WAS THAT MAN? lol... How quickly we forget who and what. My nephew's wife came and brought my mother's great grandson. They come very frequently, so mother knows who he is if not exactly he belongs to her. She is very familiar with him. She got very nervous with us all in her " room. " Evidently they sit with him out in the big room, which as much energy as he has, we will also the next time we see them. Mother wandered out of the room and I found her sitting out in the other room just talking away, showing off her nails.  I explained she either came back, we came out or I was leaving. She quickly got up. Leaving was as hard as coming this time, she sobbed and clung to me and Cody not wanting us to go. I explained I had to work, do laundry, etc and we would be back. But leaving with her crying is very hard. She misses us clearly even though she probably didn't remember that night that we had been there. That is my only relief in having her where she is, she doesn't remember. 

Christmas 2012

Mom at Christmas 

this is my mother who you can see the light doesn't 

quite fill her like it use to do and with her granddaughter Cody

who she does remember just not her name! lol 

Today is February 16, 2013. I haven't seen my mother in over a month. I have been sick several times since Christmas, and we have had obligations that haven't let us get up to see her. Part of the trouble with living so far away. It has to be a planned "day" adventure. My brother hasn't called me with updates, or news which is normal. My nephew's wife goes to see her frequently and takes her 3 year old son to see mother and I can only imagine how happy that makes her. My brother did accidentally call me last Sunday and if I hadn't asked how mother was, he wouldn't have said. I just totally do not understand how some people can be so indifferent, cold or non reacting to other peoples eagerness to be involved. It is as if we are not brother and sister, but perhaps just two acquaintances involved in taking care of this person that doesn't bind us together just that we have to take care of together. My brother did say after prompting that mother is getting worse, they say she's " contrary" well hell she's been "contrary" all of her life. Getting worse is part of dementia, oh wait, they don't know about what dementia causes or affects. My sister in law still refers to it as Alzheimer's and it is not. This is old age senile dementia which the others in her family had as well. There is a fine line, but it is different. He says she thinks he is her dad, maybe he looks like him I don't know. We have never seen a picture. I do know that after one year of taking care of my mother in an assisted living facility which does that count truly as " care?" they had to take a trip to Disney World to rest themselves or reward themselves for a difficult year in having to move mother once because she ran away (more to come later on this) or having to make so many phone calls. My sister in law did mention she had spent hours on the phone lol... lol lol yes you have to do this sometimes. But I did mention yes I knew how taxing it was to take care of her since she lived with me physically for 8 years and was with me 24/7 and I never took a trip to Disney World or was offered one minute of respite from the constant care she required. My daughter and I put our lives on hold, my daughter was 9 and she was 17 when her grandmother left. We lost many years of fun activities that we might have been able to enjoy together, but we did what we had to do. I was amused they had to go to the busiest place on earth at Christmas to relax. I told my sister in law please have a wonderful time you have earned it.  I spit afterward .. lol 
I am seeing my mother tomorrow, I do hope she will remember us, a month when someone is in the shape and place she is in, could make a huge difference. She will be 91 in May.