Alzheimer's Disease Support Group
Alzheimer's disease (AD) is the most common cause of dementia and characterized by progressive cognitive deterioration with declining activities of daily living and neuropsychiatric symptoms or behavioral changes. An early symptom is memory loss (amnesia), usually manifesting as minor forgetfulness that becomes pronounced with illness progression, with relative...
I sent this email to a friend whose mother is now starting the ALZ journey. I am sharing because I thought, how many of you would write the same letter? Probably all of us.
I have been married 30 years of my life and I think that only about 10 of them have been good years, all the rest were unhappy or a struggle. Rollie and I have been together 16 years and he has been sick for 10 of them. That's a long time. Fortunately, I am not having a 50's anxiety attack I still feel young and am looking forward to a life after Alzheimer's.
I eat well, I am exercising, I get enough sleep, I have the kids who are really helping a lot, I have friends, I have a great support group of ladies but lately it isn't enough to get through the day. Each day seems like it is a month. I guess I just must pass through this, some kind of life trial.
I believe that what has happened is that everyone around me, in my support group and literature I have read indicated that Rollie was closer to the end. In February we met with the Palliative Care Doctor for the first time. His regular doctor will not tell me how long he thinks Rollie- he says it is not his policy because so many times his prediction is wrong so he just doesn't anymore. The PC doctor told me she thinks he has at least 2 more years. Two more years seems like a life sentence right now. I thought and my support people thought it was about a year. I felt like she punched me in the gut. I am committed to taking care of him at home until the end but it is so draining sometimes. He is like a huge 3 year old child. The shadowing is really getting to me. He stays close to me all the time. I mean. close, like right now he has his chair pulled up close to me while I am on the computer. I understand why, he is afraid. I know that but still sometimes I feel like I am suffocating.
Make sure your dad gets time to himself, even if an hour a day, he might not realize it right now but he needs it.
Here is a site I go to everyday, sometimes even several times a day. http://www.dailystrength.org/c/Alzheimers-Disease/support-group
You can be as anonymous as you want or not. We talk about everything, some of us are wives, some of us are daughters, we have one husband and a couple of hired caregivers. As a matter of fact I am going to Las Vegas in a couple of weeks with one of the women I met on this site. We both are in the same place and need a break.
Anyway, thanks for listening (reading). Hope you have a nice day today.
I have been married 30 years of my life and I think that only about 10 of them have been good years, all the rest were unhappy or a struggle. Rollie and I have been together 16 years and he has been sick for 10 of them. That's a long time. Fortunately, I am not having a 50's anxiety attack I still feel young and am looking forward to a life after Alzheimer's.
I eat well, I am exercising, I get enough sleep, I have the kids who are really helping a lot, I have friends, I have a great support group of ladies but lately it isn't enough to get through the day. Each day seems like it is a month. I guess I just must pass through this, some kind of life trial.
I believe that what has happened is that everyone around me, in my support group and literature I have read indicated that Rollie was closer to the end. In February we met with the Palliative Care Doctor for the first time. His regular doctor will not tell me how long he thinks Rollie- he says it is not his policy because so many times his prediction is wrong so he just doesn't anymore. The PC doctor told me she thinks he has at least 2 more years. Two more years seems like a life sentence right now. I thought and my support people thought it was about a year. I felt like she punched me in the gut. I am committed to taking care of him at home until the end but it is so draining sometimes. He is like a huge 3 year old child. The shadowing is really getting to me. He stays close to me all the time. I mean. close, like right now he has his chair pulled up close to me while I am on the computer. I understand why, he is afraid. I know that but still sometimes I feel like I am suffocating.
Make sure your dad gets time to himself, even if an hour a day, he might not realize it right now but he needs it.
Here is a site I go to everyday, sometimes even several times a day. http://www.dailystrength.org/c/Alzheimers-Disease/support-group
You can be as anonymous as you want or not. We talk about everything, some of us are wives, some of us are daughters, we have one husband and a couple of hired caregivers. As a matter of fact I am going to Las Vegas in a couple of weeks with one of the women I met on this site. We both are in the same place and need a break.
Anyway, thanks for listening (reading). Hope you have a nice day today.
I can really relate to what you are saying. Yesterday I took Ken to the University of Utah to see if he will qualify for the next study. The reasoning behind this is all of the tests Ken has free access to and all of the personal help I receive sitting next to some of the best Alzheimer's Research doctors in the nation. I was so impressed with the doctor we will be working with on the next study. He is a recent graduate of Harvard and was able to spend a lot of quality time with me. Rollie is a little ahead of Ken, but I asked the doctor to give me his honest feeling and guess as to how long this could go on for Ken. Ken's symptoms started about 12 years ago. He was diagnosed in 2006. I think he has moved quite slowly up to this point in time. For the past 6 months, he is moving faster. I asked the doctor if he thought it would be years, he said no it would not be years because the disease was beginning to pick up speed.
I also told him that there would be no life saving measures taken as Ken advances. He told me that he thought that was a good choice on my part. He told me that the new study would not benefit Ken, but it may benefit someone else in the future.
Like you, 2 more years would kill me off. I don't want to think about that. It really frightens me.
Let's try to just through another day.
Sharon
After her mini-mental test and the decline in numbers yesterday.. (Dec 09 was 27, March 11 is 19) It seems to be rapidly declining. I dont believe it will be years, and I pray it wont be. I did some research on the mini-mental test on the ALZ site, they say a normal decline would be 2-4 points in one year time. That doesnt sound good for mom now does it??? According to it as well... she is in "moderate dementia" but according to stages she is "moderate to severe" even tipping into severe severe on occasion. But with mom, sometimes I still believe it is just "she wants to die" period. Her PC has dx her with "failure to thrive", she has been told she has CHF, and parkinsonism symptoms. She already has a pacemaker because of heart pauses, she hasnt needed her BP meds in over a year now because her BP wont stay up in a good enough range to medicate. Now she is starting to gain weight because of edema which her PC says is due to lack of nutrition and protein.
this is not a fun roller coaster. I want to stop and get off before I just puke my life away too.
Janel
I care for my 90 yr old MIL.I am always torn.I want to be able to care for her at home.But I do not want this to be my life,for years on end.It restricts and limits, the life that I would like to be enjoying with my husband.She is cooperative and pleasant.The problem is that she is right there 24/7.
She follows me at times.She is always whispering or mumbling.She has an annoying habit of making a whistling sound, for hours at a time.She frequently sees her dead relatives.As I said she is 90 years old.But everyday complains that she has no idea where her parents are,and that no one tells her anything.I understand that none of this is under her control,but it is still so annoying.
My husband is great and helps with her care,but can't really help much with her personal care.Showering takes a long time,and she fusses that she just had one.If it were up to her,she would never bathe and would wear the same outfit for years.
Well thanks for your honesty and letting me rant on your post.I just wanted to let you know,that your post helped me.Blessings........Cheryl
Each stage can be up to 10 to 15 years long. Some people move slower, some fast. I knew how slow this goes. My mother's mother had Alz and was taken care of by my Aunt for 20 some years before she died in a nursing home in a fetal position from the Alz at age 102.
Don't always look for an end. Day to day. I finally have a volunteer sitting with mom 1 hour a week. Yesterday was the first time. I didn't realize how much I missed driving in the car, alone with the radio blasting, not having to listen to my mom's constant chatter.
By the time my grandmother died at 102, my Aunt had no friends, no life and was in her 80s. She died shortly after my grandmother did. I can't stand thinking about what will happen to me so I stay in the today, only day by day.