Saturday, March 24, 2012

Mussings about Dementa/Alzheimer's

If you don't know anyone with Dementia/Alzheimer's disease or have  parents or another loved one with Alzheimer’s disease you will soon do so. Statistics say that  5.4 million Americans have Alzheimer’s disease and another 14 million or so act as unpaid caregivers. It is a horrid disease that takes away independence, steals memories, and rips away most all  dignity. 70% of people with Dementia have Alzheimer's. It effects a lot of elderly people but is not  a normal part of being elderly.
My mother, my family and I have become part of this growing number, especially in the three years or so when our mom began exhibiting some of the typical traits of the disease.  She was no longer able to balance the checkbook or pay her own bills and started talking to herself even when people were in the room with her. The most obvious symptom, repeatedly saying the same phrases and asking the same questions came early on.
These days I've gone from being a daughter to being a caregiver, helping her change clothes, shower, brush her teeth, and get in and out of bed. Thankfully she can use the bathroom by herself as well as feed herself. There are many times when I think she won't make it another day and then there are times when I think she's getting better. This roller coaster of emotions is something I was not prepared for because I go from anger to joy to hopelessness in the wink of an eye. I have to shake myself mentally and remember that this is about her, not me, and try and understand how it affects her, a once sharp and creative woman who could do anything she set her mind to. Now I sometimes weep at the loss of my mother but am careful not to let her see the tears. Today is one of those days. She had a hard night last night, waking up three times trying to remember something that needed doing, then wanting to be in her own bed (she was), then waking up wanting to know if everything was off. Now she is sleeping and I can't get her up to go outside, which she loves to do. This worries me. To be honest I worry if she sleeps too much and worry if she sleeps too little. I fret over the fact that her appetite has become non-existent despite her medications to give her more appetite and a calmer mind. At least the horrible delusions and auditory hallucinations have gone away thanks to her meds. She is also on Aracept but I couldn't tell you if it is doing the job it's meant to do because like I stated above some days are good and some are bad. And yes I've talked to more than one doctor and nurses and health care workers and read hundreds of articles on the subject. And what I know is still not much but every little bit of information helps and you never know what tips will work to make your loved one more comfortable or easier for you to do your job. It's a pick and choose what works world.
 We no longer plan “spur of the moment” things or get away for even one night but this is the road I've chosen and most times I'm not sorry for it. She took care of me when I was a babe and now it's time for me to care for her. I will state here that my husband and granddaughter are a tremendous help to me and so is the support of the rest of our family. I couldn't do it without their help and love.
Care giving is a demanding job, a 24/7 job. Our goal is to keep Mom safe and comfortable at home for as long as we can. How long will that be? No one knows.  For now we will take it all one minute at a time. Incidentally Medicare/Tricare do not pay for in home elder care, only care that involves a medical problem like cancer or diabetes, etc. Incontinence, hygiene, feeding, etc. is all on your own dime.
I do still walk in the morning, most mornings anyway and spend some time on the computer when I can. Some days I just get to read email and once in a while I get to write on my blog. I know that it is recommended that care givers take care of themselves too but sometimes it's hard to do. Still I have a great support system and hopefully in the future we can work something out and get some professional home health care people in to help us out. 
That's about it. Remember to give your loved ones a call or drop them a postcard or a video (my brother and his wife and our daughter in Seattle make videos for my mom and she loves them).  Communication helps and it makes everyone feel like they are doing something for their loved ones.