It's been 3 years, and on this side we still are raw. It's amazing wow something like this affects you. I fear everyday that I will get dementia or Alzheimer's. My uncle died from this type of dementia, it is within the realm of things for me to get it. I am now 59, my daughter has graduated from college, she is 23. She holds on to everything that was her Nana's. Little scraps of nothing, make up brushes that could have bacteria in them. LOL she is a pack rat. I find her doing things that I think are the things or way my mother would do them, I tell her she is channeling her Nana. She says things to me that my mother would say to hurt my feelings to do the same, not sure why. She also calls me " Nana," when she thinks I have actions like my mother. 
We do think back and remember funny things that she did and when we see people on tv or movies or in life doing the same we say they are " doing the Nana." 
Life goes on, my birthday is forever tainted by burying my mother that day. Not something that I will get over lightly if ever. My brother has had cancer now, my nephew has had a horrible event in his life with life changing results. That part of my family has now all moved to Arizona forever. I don't know if I will ever see my brother again. He is 73 and just old. I don't have the money to travel to Arizona, 4 days by car one way, and expensive to fly either way. We miss them even though we had a weird family relationship. I don't think my brother ever realized what picking that date means to me. He is not one to ponder anything like that too long. He claims he doesn't care what people think. 
We contribute to dementia charities, we wear the appropriate ribbons, and I pray everyday that I take after my father's side of this family. His sister is still all there at 95. My mother does have a brother that is well minded and he is 91. They always said he had a different father, but I think the dementia gene is on my mother's mathernal side. Her mother and aunt both had it. 
We had our dna done, and it would have been fun to share that with my mother, she would have gotten a kick out of that. Everyday things come along, and I think well Mother would.... yes she would have ...
 

The Funeral and aftermath

My brother and sister in law asked me a few questions about what I wanted for her funeral.  They had a visitation in their city, expecting a few hundred people from his church that my mother attended maybe 10 times.  We had about 25 people show up, and most of them were from my city who came to support me. We then took my mother to Louisville, Ky for one night of visitation and then burial the next morning. My sister in law and brother insisted on a no frills ceremony at the grave site. I wasn't fully aware obviously of what this entailed. We had lots relatives, mostly cousins, and my mother's brother came to both visitation and burial. I had several childhood friends, old church folks come to see us. My ex brother in law came and because he had a grudge with my daughter, accosted her at the casket. We were standing there with his wife, my ex's sister and another sister, when he decided to make a rude comment about Cody not coming to a family wedding. Evidently he called her a snotty bitch and if I had heard it, he would have been knocked out. He has since passed in a horrible undignified manner and I believe I hear karma knocking at his door. We had a long time friend of my brother's speak, who loved my parents as his own. He was eloquent and concise. We had music played and then we proceeded to the burial site. There wasn't any green grass laid down, the lift that lowers your loved one into the ground wasn't there, NO FRILLS was NO FRILLS. I was horrified.  They had said no service at the grave and I understood that, but we did say a prayer, and then i watched as my mother's casket was strapped and just whoosed down into the hole. I can honestly say this makes the burial a horrific event. My daughter has been traumatized about this, and it is something you can never UNSEE. My poor mother had more than enough money to pay for a lift and a decent decent into the ground. These are hard things for me to reconcile, when I took such good care of her. 
We received a furniture deliver of things they didn't want. Her bed of course was ruined because they chopped the legs off, they sent us stuff back and honestly could be thrown in the garbage, but they loaded it onto the truck and sent it. We have her vanity and stool.  I have her silver and her jewelry which doesn't amount to much more than costume jewelry. After 3 years I have begun going through 2 boxes of things I dumped quickly when she had to move in a weekend and it was things in her dresser. I found a little blue bowl with some dice and a few black/white marbles from a game and was about to pitch all the contents, when I spied something gold in the bottom of the bowl.  I believe I have found my father's wedding ring, if not I don't know who it belongs too, it is big enough to fit around my thumb and could only be his, but I thought when he was buried my mother buried it with him.
It has taken me 3 years to write this part and I still can see my mother being dumped into the ground like a log. 
Dementia still impacts my life, my daughter holds on to everything that was my mothers, wants a tattoo of cardinals representing her pawpaw and nana. I don't like it but eventually she will do what she wants. Her grandparents would be so proud of her graduating from college this December and would have lovingly gone to her ceremony. I miss you mother and I am glad your suffering is over, but I didn't like how you ended your time with us. 
 

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. 

Lottie and Don on her 90th brithday.

Phase 2

She ran away on Tuesday. Actually left the by the dining room door, which leads to a walking track. She went around the end of the building and into the front parking lot, which leads to a short driveway out to the heavy congested 5 lane street.  They said they were " watching " her. 
She shuffles her feet, it would take her some time to make this trip around the building.
 She gets out of breath easily. It was 80 degrees or more. I am sure she had on long sleeves.  
She wouldn't come in for 20 minutes after they found her. They said she had a pair of pants, a hair pic and a 3 inch hunting knife on her. I was asked if I had packed the knife for her, which of course all dementia patients receive one on leaving their family home. duh...
She was determined to leave. 
She lives in an assisted living facility that obviously doesn't watch the residents like they should. They have other people with various degrees of Alzheimer's and Dementia that they shouldn't let around the end of the building as well. There should be a fence.
She was told unless she had a sitter 24/7 then she had 24 hours to get out of the home she has had for 10 months now. 
She was sure they were laughing at her.
She was sure one of the aides didn't like her, and she was sure she didn't like her back.
She was moved to a hospital on Wednesday at noon, I wasn't notified by anyone of the conditions or the ultimatums until 9:30 Wednesday evening.
She had to stay in the hospital 3 days and then she could go to rehab for 3 weeks if they found something wrong with her. 
She has nothing wrong with her except her brain doesn't work like it should.
She will not go to rehab, but to a respite room in the new facility.
She was to be placed in a new facility, found in the 24 hours by her son and daughter in law ( before they were my brother and sister in law, now they are hers.)
She is to be under lock down, wear a bracelet, be monitored, and in a unit with 12 others like herself. 
She might never see the rest of the new building, unless she is taken by me I suppose or one of the people in her unit.
I am supposed to go set up her room, but this won't happen because I am going to help my daughter buy a car this weekend nearby the new place and will not have time or energy to set up the room. 
There are no give backs, you take her, she is yours. 
I have read reports online that the new facility might be understaffed and that patients are left waiting on issues that perhaps with more help, wouldn't happen. This was not researched by either her son or daughter in law.
The afore mentioned relatives can now go on a vacation they said it is a priority to go on, since it has been planned for over a year. I on the other hand didn't have a vacation in 8 years of care in my home. 
Bon Voyage.
Her 85 year old brother is very upset that no one will be available for her orientation into a new facility and the response was too bad, he can come take care of her. He lives far away in another state and is 85 of course. 
At the end of the day, once again she is safe but her mental decline will be swifter with the changes, confusion and stress.

Out of The Loop

Out of the loop is where I am at this moment.  After taking care of my mother for the last 10 years of her life, I no longer am entitled to know if she is hurt, sick or in trouble. I haven't been able to get my mother on the phone for over a week. I finally got her on the phone last night, Sunday.  She said she had been trying to get to the phone, when she got there it was empty and she started crying. This breaks my heart. A Saturday a week ago, I called her room and some aide answered the phone and said mother couldn't talk, she was sitting in her chair with a warm compress on her shoulder.  I was worried, so I called my brother. He informed me that they had indeed taken her to the dr and had xrays. She had said someone in the home "roughed" her up, but I know that didn't happen.  He said they hadn't gotten the results, as the Dr. left before he could read them. WHAT? I asked him to call me with the results. Later in the week after not hearing from anyone, I called and my sister in law informed me that my brother had sent me an EMAIL. EMAIL? YOU CAN'T CALL ME ?????? This is how far life has deteriorated between my brother and myself. I read the email, tendonitis was suspected, she was to have a shot on Monday.  My daughter and myself were not invited up to see my niece and her family this July. They were here for a few days, and I have not even met my new grand niece who is now about 15 months old. I called my brother's house on July 4th and asked my sister in law about my mother and how was her day ( I knew my niece was flying in that day,) going and she said just fine for both. No mention of them or would we like to come up. Plenty of pictures posted on our friend FACEBOOK for me to see some of the activities. Little did my sister in law know, my nephew's wife had already told me about them coming and some of the things they were planning, including a family picture. Did they include the great grandmother? NO.. They visited my mother at least but my niece's husband said my mother didn't recognize her granddaughter or the kids, and no photos were taken as their " phone" was broken.  All of this makes me sad. It depresses me.  On top of all of this my broker who handles my daughter's college fund reported to my brother and his wife that I had taken funds from the account. This goes against policy and as of today I am closing the account with someone that was a family friend and supporter to my mother. This is a breach of confidentiality and it's none of their business what I do with the money my parents left for my daughter. My father would want me to do what I needed to do with that money including paying for my a/c if that is the only money at my discretion. My brother hasn't inquired about my financial situation since my mother left. He hasn't asked about my mental health, my physical health or even about his niece. 
My daughter has days when it makes her very sad, that she has no family per se. My brother and his wife have no interest. My ex's family hasn't called my house 1 time in 9 years since our divorce to talk to her. Their niece, their granddaughter. sighs... 

Dignity...

This the face of Dementia... Someone lets her dress herself in anything, they don't comb her hair, they don't push her glasses up.. and then they take her picture. She has beautiful brown hair naturally, she has nice clothes, and she has some sense. I am not happy when people take pictures of my mother with her hair a mess, and mismatched clothes as if to say here she is now. This is not my mother's way of doing things, and she should be afforded the dignity of someone helping her dress a little better, helping her comb her hair, or not taking her picture. The only good thing about this picture is that it is my smiling mother mugging for the camera and she doesn't realize how she looks.  I can see the dementia lurking and it is progressing. But I love her even if her clothes don't match and her hair is a mess... miss you mom .. the real you ...

May 14, 2012. My mother was 90 yesterday which was a Monday. I saw her on Sunday, Mother's day. I told her ohhh about 6 times that Monday was her birthday and everytime her response was are you sure? I am positive it was long ago. I would tell her that she was going to be 90 and she said she's ready to die. I told her that her son and his wife, were planning a party for her on the 19th, and she said I won't be there I am going to die. I told her that her daughter in law would be very angry since I am sure she ordered a lovely cake from publix for her. ( am being facetious.) Told her that her brother was coming with his wife and one of his 8 kids. She said my brother??? do i have a brother? you mean Tony? I said no Tony is your son, ohhh she said. I said Don is your brother. She said I can't get a picture in my head of my brother. I said thats okay you will recognize him when you see him. She said you need to be there to say look mother here is Don! here is Babette... so I don't seem to look stupid.  My mother was born in 1922, prohibition, the depression, WW II, Korean War, Vietnam, all the others, TVs, electronics, indoor plumbing, just a myriad amount of inventions that she saw come into her life.  
I cannot imagine trying to conjure up a face of a loved one and not being able to do it. I cannot imagine wanting to say something and something entirely different comes out of your mouth and you either laugh or get mad about it. My mother turned 90 and while she has not always been the kindest person to me, she was better than her mother. She has now lived longer than anyone on her side of the family. She has a baby brother that is 85. 
The dementia worsens, her feet and ankles are swollen alot, she doesn't get near the exercise she did here in the house. No on is paying attention to this but me.  I wish I could win the lottery and then I could afford to buy a house with a wing just for her and someone to take care of her in the last part of her life. 
Happy Birthday Mother, I am glad you are still with us, even if you don't know all of us. 

Flickety Spinkey la louiesamafrado

Went to pick up mother yesterday to take her out for the day, and she started talking gibberish. This happened the last time as well. She started to the closet and said wholickedstampfridgerator, and my daughter and I just said that wasn't english. She turned to us and started laughing and said I can't talk! I said we know. As long as we stay in that assisted living facility she cannot talk. We took her out in the car and she started talking about trees, yes incessantly, but coherently. She talked about how she loved going out in the car and riding, looking at trees, yes trees again but again coherent.  She wanted to know where we were going. I said to a mall and she said ohhh good.  We had taken her to one before.  It was longer from the facility. On the way home, there was a wreck on the highway, so we had to use the gps to find an alternative route. It was near her dinner time and she started panicking. I told her that we had called ahead and I would get her something to eat on the way back. We were over a hour and half getting back. She started obsessing about the traffic, wanting to know where they were coming from, where they were going and why they were passing me.  The only problem with this was my nerves. It was very nerve wracking to try and find a way to go, and she just never stopped talking. My patience is just shot with that kind of thing and I am just so sorry that I wasn't as nice as I could be. I asked her to be quiet and of course she didn't. LOL   but I tried.  But the time we got back we had to turn around a couple of times looking for something for her to eat she was beside herself about where she was and when she was getting home.
Lesson learned, don't go too far, don't keep her out too long, and make sure she has something to occupy herself in the car next time.  I love my mother but I am not patient enough to take her far again.
I am sorry.

5 months

It's been five months since mother left to go to assisted living. Trying to do an update in my head. She has steadily gone downhill. Calling her on the phone is painful, she is wallowing in paranoia. She is convinced either another resident or one of the workers is stealing her clothes, her things and attempting to be mean to her everyday. She doesn't talk coherently, repeats herself and just doesn't have the right word for anything much come out of her mouth. I did convince her that I brought her clothes yesterday and they were hers from the house. She didn't like them, said they were rags but she agrees they are hers. That is a miracle! She did say they would be gone in 10 days or less because once the " others " saw them, they would steal them.  Took her to her favorite restaurant and she has never been there before in her life, and has never had a milkshake either. She doesn't remember that I was married for 23 years, or she had a son in law or what his name is, and I said that's okay.. lol .. She does believe Cody just appeared on the scene.
She calls her glasses " chicken glasses, " don't know what that means, couldn't get it out of her.
Financially it's been very tough on me with one weekend's  notice my brother took my mother and cut off the contribution she made to my income. It has been very difficult and would have been nicer to have some advance notice. I am losing my job in June, and it has been difficult to put any money away without the tiny bit that she gave me every month.  It's hard for me to go see her every other weekend because of the gas cost and of course it is a day's activity, which means meals away from home, unless I am going to pack a lunch for myself and my daughter. I cannot take mother out to eat unless I have extra money, we are not allowed to use her credit card for even a meal.  I am told to take her shopping with her card for clothes and of course she is resistant at all ways when we have the time to do this, but that is the only thing I can use the card for so I am ordered.
I am not kept up to date on her health issues and they are doing things that I don't agree with but am not asked my opinion or told either.  I was her complete caregiver for 8 years and know intimately her health issues. Was told did you know that this was caused by????? YES I DID know I was there when it was diagnosed.
On the bright side, my mother is safe, she has gained weight and she is comfortable, albeit it a little mean, paranoid and the dementia rages on to the end.
She will be 90 in May and I wanted to give her a party with invites to relatives out of town, but that will not be allowed. Only a small party at the home. BLAH!
 Does it sound like we are children? Yes I am not a viable part of my mother's life anymore other than visiting her and taking her on unpleasant chores no one else wants to participate in now.

Conversations

Having conversations with Mother now is like talking to someone that hasn't learned how to put words together if that is possible to understand. What did you have for lunch today mother? " coconut " " real coconut" " real coconut on a ticket," on a ticket? "yes coconut scooped on a thing spread out on ticket."  What are you doing mother? " I am trying to find something you put on, on top of your clothes." A coat? "NO,"  A sweater? " "no" "something that keeps your clothes from being seen."  Well mother what have you done today? " went to church, and then to that place where they come and go and then go back in the back and do things and then they bring you that stuff." A restaurant?  " well you might call it that, but it's where they come and ask you something and then leave again and then bring you something to eat."  I am glad she is not mad at my brother and his wife anymore, evidently he took her to open a new checking account, and she thinks she can have anything she wants now.  She could have had anything she wants before, she just didnt beleive it.  So Tony and you are friends again? " oh yes, he did the nicest thing and he brought me some things I wanted."  did he bring you depends? " no what is that?" "I don't wear depends."  well lets talk about something else mother, " like what? horse piss?"
Frankly the lack of current affairs in her life is making her worse, no tv that works, no conversations with people that have day to day life experiences to share with her, is making her lose what ability to talk and carry on a conversation in the present time that she might have had before.
horse piss really????

Time has passed..

November 8th my mother was moved from my house to her new home. Assisted living, 2 hours away.  It's been a long month for both of us. She is angry, homesick, more confused, did I mention angry? Yes it's all normal for someone with dementia to have a set back when they have been totally moved from their enviroment and everything they " know" as normal.  She talks out of her head, repeats the things she is angry about constantly, sits and just stews about the hurts. She has stopped talking to my brother, he has stolen her money and won't give her any. She refuses to go to church with him, she refuses to talk to him or his wife at all now. She won't go anywhere they want her to go, won't do anything for them.  I am sorry that she has imagined that he has wronged her, and that their relationship is not good at this point. But he has ruined our relationship as well, over this move. He has accused me of stealing from my mother, he assumes he doesn't need to share anything going on with her, he doesn't let me know what is going on, hasn't read the 8 pages I printed with her ailments, details about her life, her surgeries, her dr appt's needed, etc.  I know I am told he is taking care of her now, but to call her on the phone and hear her talking only about her anger with him, and what he has done, imagined or not, just hurts my heart. I cannot help her, soothe her, or give her peace of mind. I went to see her yesterday and she just talks tight-lipped about her relationship with him. I tried to reason with her about seeing her great grandson, and how that she can only do this through her son. She doesn't care.  Her dementia has allowed her thoughts to flow from her mouth, even when they are inappropriate. She is in a good place, it's clean, but she fights being part of the society. She refuses to go to some of the activities, she thinks people are stealing her clothes. She believes her clothes are rags and that I brought her used clothes. She even said I brought her mens pants! 
My heart hurts that  I can't visit more often. My brother didn't want me to come last week on Sunday, since that is the " only day" he takes her out to eat, to church and to see her great grandson. So in spite of it being the only day I could go that week, I didn't go.  Of course, she is angry with him and didn't go. Did he call me and say come on up and see her? No, just a five minute call is too much.  Our relationship, mine and his, has deteriorated so much that I won't be spending Christmas day with my family.  I am hurt and it doesn't seem to matter.  I have told him this, and nothing is worth fixing for him. 
Merry Christmas....

from zero to 60

From nothing to 60 is how my brother operates. He called me a week ago from today and said he was coming on the following Friday to inform mother that he was taking her to Assisted Living near him. He has decided that the assisted living I found near me, is a dump. He has decided that she has a bad taste in her mouth for it, which in reality, she will have a bad taste in her mouth for any of them. I wasn't told when he was planning the move. My brother's way of communicating is if you don't ask he don't tell. I know its bad grammar! lol ... I had to call twice to find out that he had planned to come on the following Tuesday to collect her and all her things. I was told to get her a TB test and pack all the things she needed by Tuesday. I didn't even discuss it with her on Friday, I brought it up on Saturday morning, and she wasn't even aware it was happening this soon, or the reality that it was a final move. She is under the impression that she is staying for just a few days and then coming home. No you are not coming home.  I have had to call and see what furniture she might be able to take, what exactly needs to go.. no one has the answer.  My sister in law attempted to say toothbrush,  really???? She needs a toothbrush?
I can't get her a TB test, she tests positive for it always, because she was exposed to TB when her father died from it.  So then get a chest xray.  I let him take her to get a chest xray when he came on Friday. He said they had to wait 2 hours. LOL Welcome to the world of waiting. My sister in law said that he was touched by my email asking for help. Which one? the 5th or the 6th? lol... I am a little bitter.
I spent the weekend packing and unpacking what she had gathered. She keeps saying they won't take her and all her stuff, they will send her home. I fixed pictures for her to take, went to Walmart 1000 times and took her shopping for clothes.  Thanks for the short notice.
I am happy she is going to be looked after, don't get me wrong, I am happy he made a decision and is helping somewhat.  This is like being an alcoholic, you can't just stop drinking overnight, my daughter and I have based all our thoughts the last 8 years, will mom like it, will mother be okay? we have to feed mother before, we need to make sure mother has this. It isn't something you can turn off overnight.
I wish her well, but she just said in 10 days I will be coming back just you wait and see.
Oh mother...