Hi Everyone!
I am Angela and my 74 year old mother has Alzheimer’s disease. I live in Oklahoma and she is in Georgia where my brother lives 2 miles from her care home. Let me give you some background.
My mother was perfectly healthy three years ago. She was so healthy that she was taking care of elderly patients as a sitter. One day, she went to help one of her patients up and snapped a vertebra in her back. She had surgery, got well and went back to work only to do it again within a few months. She then had another surgery and got through that good. Two weeks later, she had a tear in her bowel that required repair, colon ostomy while the bowel healed and then 6 months later, a reversal for that. She finally got all healed up from that! She then started having incredible pain in her sides, went to the hospital and found out that she had multiple broken ribs. We all thought maybe her home health care may have been rough with her but she insisted that they were not. Come to find out, even while in the hospital, she had several bones break. Her bones are so brittle that she breaks them constantly and is in great pain despite major pain medications. They cannot find out what is causing this…cancer ruled out and all the other things ruled out.
Fast forward a little to last month. On April 10th, she went into the hospital for pneumonia and spent 6 days there. The doctor said for her not to be left alone so she, my brother and I chose a hospice home. The doctor did not want to do that but she insisted. Anyway, I spoke to her on the 15th and the 17th and she was fine. A little forgetful but fine. Three days later, BOOM. Dementia hit her like a ton of bricks. She is scared all the time and calls everyone she can call yelling “Help me” over and over, she hardly sleeps despite being given meds. She knows my name (most of the time) and my brother, calls no less than 30 times a day talking pretty much nonsense but when she is lucid, she talks about the care home people, my brother, my cousin, etc plotting against her. She even thought that her phone caused the lady to speak over the loud speaker (in the home)
I do not know what to do to bring her comfort. She is not the person that she was at all yet she seems to be stuck between lucid enough to know that things are wrong but not lucid enough to be able to do anything about it. I feel so bad for her and my poor brother. He has always been her baby so while he is working, she is calling 30+ times a day with her “help me” over and over and it just has worn him down. I am worried about him as well. He has two kids, a wife, two jobs and one weekend job and she insists that he come there several times a week or she starts treating him horribly. I am, at least, able to just not answer the phone sometimes. I work from home and go to school online, so as long as I am not meeting a client, I can talk but I get to where I do not want to talk because it is exhausting and heartbreaking!
I feel like a horrible daughter and when she first got this way, I was a mess. I could not imagine her not being in my life but now…I would miss her but she needs peace! She is just a crying mess most days…seeing bugs crawling on the wall, thinking that people are poisoning her or out to get her. People should not have to live that way.
I know that you all understand this well, I just wonder how you cope? I cannot imagine those of you who have your family living with you. I offered for her to come here but she will not do that. Perhaps that is best.
I also want to ask….my mother has this and so does her sister, my aunt who has it bad as well. I am terrified that I will also inherit this. I wake up nights sometimes scared to death that one day I will wake up this way. Do any of you ever feel that way? What do you do about it?
Thank you for “listening” and I am sorry that it is so long!
Angela
I am Angela and my 74 year old mother has Alzheimer’s disease. I live in Oklahoma and she is in Georgia where my brother lives 2 miles from her care home. Let me give you some background.
My mother was perfectly healthy three years ago. She was so healthy that she was taking care of elderly patients as a sitter. One day, she went to help one of her patients up and snapped a vertebra in her back. She had surgery, got well and went back to work only to do it again within a few months. She then had another surgery and got through that good. Two weeks later, she had a tear in her bowel that required repair, colon ostomy while the bowel healed and then 6 months later, a reversal for that. She finally got all healed up from that! She then started having incredible pain in her sides, went to the hospital and found out that she had multiple broken ribs. We all thought maybe her home health care may have been rough with her but she insisted that they were not. Come to find out, even while in the hospital, she had several bones break. Her bones are so brittle that she breaks them constantly and is in great pain despite major pain medications. They cannot find out what is causing this…cancer ruled out and all the other things ruled out.
Fast forward a little to last month. On April 10th, she went into the hospital for pneumonia and spent 6 days there. The doctor said for her not to be left alone so she, my brother and I chose a hospice home. The doctor did not want to do that but she insisted. Anyway, I spoke to her on the 15th and the 17th and she was fine. A little forgetful but fine. Three days later, BOOM. Dementia hit her like a ton of bricks. She is scared all the time and calls everyone she can call yelling “Help me” over and over, she hardly sleeps despite being given meds. She knows my name (most of the time) and my brother, calls no less than 30 times a day talking pretty much nonsense but when she is lucid, she talks about the care home people, my brother, my cousin, etc plotting against her. She even thought that her phone caused the lady to speak over the loud speaker (in the home)
I do not know what to do to bring her comfort. She is not the person that she was at all yet she seems to be stuck between lucid enough to know that things are wrong but not lucid enough to be able to do anything about it. I feel so bad for her and my poor brother. He has always been her baby so while he is working, she is calling 30+ times a day with her “help me” over and over and it just has worn him down. I am worried about him as well. He has two kids, a wife, two jobs and one weekend job and she insists that he come there several times a week or she starts treating him horribly. I am, at least, able to just not answer the phone sometimes. I work from home and go to school online, so as long as I am not meeting a client, I can talk but I get to where I do not want to talk because it is exhausting and heartbreaking!
I feel like a horrible daughter and when she first got this way, I was a mess. I could not imagine her not being in my life but now…I would miss her but she needs peace! She is just a crying mess most days…seeing bugs crawling on the wall, thinking that people are poisoning her or out to get her. People should not have to live that way.
I know that you all understand this well, I just wonder how you cope? I cannot imagine those of you who have your family living with you. I offered for her to come here but she will not do that. Perhaps that is best.
I also want to ask….my mother has this and so does her sister, my aunt who has it bad as well. I am terrified that I will also inherit this. I wake up nights sometimes scared to death that one day I will wake up this way. Do any of you ever feel that way? What do you do about it?
Thank you for “listening” and I am sorry that it is so long!
Angela
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