Presentation Preparations

Mom has been scheduled to present on early on-set Alzheimer's and how it is impacting Lyn.  She will be presenting twice this month.  Once for the staff of the agency which manages Lyn's care and once for the staff at day hab.  There are new employees in both locations and keeping folks educated is the goal.  Mom wanted to speak about Alzheimer's a bit more broadly but has been asked to keep it specific to Lyn because the attendees interact with her.  Mom has shared her notes below:

My daughter is a client. She is intellectually challenged. However, 3 years ago at age 40,she was diagnosed with a terminal, brain disease, Early On-Set Alzheimer's. Anyone younger than 60 is considered Early on-set. This is just one type dementia. The only way to know, for sure, what type dementia is a post-mortem. This doesn’t mean that she’s had Alzheimer's for 3 years. Probably she’s had it more than 10 years. By the time symptoms appear the brain has been dying for several years. The plaques and tangles have spread.

• Her speech patterns have changed. 
• She is becoming more unsteady when walking on uneven surfaces or stepping off a curb. 
• She cannot make simple decision some days. I now have to help her pick out a shirt each morning. I have to wash & brush her hair. 
• She no longer can work the washing machine. That was my first clue there was a problem. 
• She is beginning to forget names. When we Skype with her sister and nephews on Sundays, she will use the boys names, when they are in screen. If they are not visible, she’ll say “the boys” or keep repeating “how are , where are…” 
• She will rise to the occasion. She will work hard to answer what she thinks you want her to say or do what she thinks you want her to do. 
• She is beginning to show signs of paranoia. IE: after regular team meeting she saw her case managers at their cars. They are talking, perhaps laughing. She has said, more than once, “they’re talking about me or laughing at me.” I assure her that is not the case, they may be talking about going to lunch or their busy schedule. She’ll look at me with great doubt in her eyes. 
• Because she “works” so hard, mentally during the day to do what she thinks she should by 3pm she’s exhausted. She eats dinner 4-4:30 and it’s not unusual to be asleep by 6pm. 
• A-typical Sundowner’s. 
• Food choices, one week she’ll like chicken or hot chocolate. The next wk I’m told that she never liked them. 
• People forget things in the order they learned them. For example, we teach our children to feed themselves, first by hand, then with a spoon, then a fork and then a knife. We teach them to put the napkin in their lap. Now, my daughter, usually keeps the napkin on the table by the plate. She will ask me to cut her meat. Although, when out she will struggle because she knows what you want her to do. This is a great strain on her brain. 
• So how do we deal with all this? With Alzheimer's patients, you go into their world. If something is said that makes no sense, go along with it unless it’s something that will cause harm or endanger her. If it’s not going to change the course of history—so what. We tell “fiblets”. Not really a lie. A fiblet is told because I want her safe, feel secure and not feel that she did something wrong.You never argue with an Alzheimer's patient, you won’t win. 

The doctor who assessed her most recently said the meds on the market today have been tested on patients over 60 yrs. They don’t know the possible side effects on anyone younger than 60. The meds, over 60, can slow down the progression but someone in their 40 – possible death. I don’t want to take such a chance with her. As the brain dies the body will no longer know when it’s hungry, thirsty, sleepy. She might not be able to walk. She might become a vegetable. She might wander. Her immune system will not fight disease as it has. I already see that.

She knows her brain is changing and that frustrates her. I try not to use the words Alzheimer's or Dementia around her.It makes her mad.She’ll say “I don’t have that diagnosis. I’m just Lyn.”