My mom is in the last stages of the illness and it is really hard at times to watch her deteriorate right in front of me. I watched the special on HBO and became more convinced than ever that keeping her home with her aides who are trained to care for her and not in a nursing home. The program was heartbreaking and yet informative. The program about the grandparents brought to mind how many much my nieces and nephews miss their grandmother. I am writing a book about my mom's experience at the onset of the disease and how she is now in the last stages. I am hoping to make not only my family more aware but the public too of how important it is for a cure to be found. The book will also have sections with websites to help people in need of information and a remember when and dedication section for those people who want to remember a loved one or dedicate a page to a loved one. Hoping to donate some proceeds to the organization.

Hi Fran, and thanks so much for joining our community. I'm downright thrilled that you're writing a book about all that you're learning about dementia, and the way you intend to integrate it with websites. You might find these forums useful, I hope so, and will do my part if you hang around.

In all caps, you ask "why." I was caught up in that originally. I looked at the family members with dementia, and the ones that probably did but were never diagnosed, and saw that it runs strong in my family, both Alzheimer's type and vascular dementia. But not everyone gets dementia, even in families like mine, so we're still left with "why me."

Just speaking for my own journey, I came to realize that the question is not important to me anymore. I'm well into Stage 4 on the 7 Stage model, and I'm focusing on the "right now," and the "soon." That's not to say that it shouldn't continue to be important to you! I'm just sharing my experience.

Please, tell me more about your mom, and your situation?

My mom passed at 63 after suffering for 10 yrs. I saw a lot of things that reminded me of things she did. Any denial I had is gone. But I have been sick since it aired. She stopped talking very early and to see someone in stage 4 communicating is wonderful.

Johna and Fran, I am glad you both joined us. We can benefit from your insight over in the other forums as well, for Caregivers and Caregivers who have lost loved ones. Please come visit there, if you like.

I watched the Memory Tapes and Caregivers portion tonight, and what helped me the most was seeing others to compare to. No one in my family had dementia until my mother, who is now in Stage 7 in a nursing home on hospice care. She has now been on Hospice 7 months. I keep thinking death must be very near, and then I question myself on that as she keeps hanging on. She is more advanced than anyone I saw tonight, except for Cousin Cliff as he was actively dying. Even the home-set footage of him was more alert and abled than my mother now is. I don't feel so much of a Chicken Little now.

My dad has now been diagnosed in the early stages. I was the one who alerted the doctor to his symptoms, but still you wonder "Am I blowing this out of proportion? Maybe he's not that bad." Then I see the people in early stages on this show -- and several of them are better "pulled together" than Dad.

Over all I think the programs were a bit of a softball approach, but that may have been needed to reach people with less exposure to the disease rather than we battle-hardened veterans. The comparisons were helpful to me, though.

Johna, my doctors say I'm a group of one, in that some of my brain related to self awareness, and talking, even more with writing, is relatively strong. Please don't have any illusions though, I'm quite the train wreck in progress, elsewhere.

I think of it as trade-offs that the disease has done to me. Verbally, still pretty good. But I started early on paranoia, rage, and hallucinations, which led to the butt-load of Seroquel I'm on. I'm not building many new memories, that transfer into long-term is not consistent anymore. I have insomnia that defeats every attempt at righting my sleep patterns. More and more when I'm talking, I'll lose what I was talking about, mid-sentence.

Lots more problems, but you get the point I hope.

quote:

Originally posted by Carolina Songbird:
Johna and Fran, I am glad you both joined us. We can benefit from your insight over in the other forums as well, for Caregivers and Caregivers who have lost loved ones. Please come visit there, if you like.

I watched the Memory Tapes and Caregivers portion tonight, and what helped me the most was seeing others to compare to. No one in my family had dementia until my mother, who is now in Stage 7 in a nursing home on hospice care. She has now been on Hospice 7 months. I keep thinking death must be very near, and then I question myself on that as she keeps hanging on. She is more advanced than anyone I saw tonight, except for Cousin Cliff as he was actively dying. Even the home-set footage of him was more alert and abled than my mother now is. I don't feel so much of a Chicken Little now.

My dad has now been diagnosed in the early stages. I was the one who alerted the doctor to his symptoms, but still you wonder "Am I blowing this out of proportion? Maybe he's not that bad." Then I see the people in early stages on this show -- and several of them are better "pulled together" than Dad.

Over all I think the programs were a bit of a softball approach, but that may have been needed to reach people with less exposure to the disease rather than we battle-hardened veterans. The comparisons were helpful to me, though.

After reading your post I can say I know how you feel. I wondered how long can a person live like this and surprise it happens. My mother died this March after just being diagnosed April 2008. A little late in the diagnosis, but I did find a link that explained the stages & she was in the last stage. They dont tell you that it is not just a memory problem. It attacks the personality of the person, makes them angry, depressed and most definately paranoid. My mother was loosing weight because she could not swallow, the food sat in her cheek. Even if you told her to swallow she would spit it out, wherever she was. She also got what I found out was called contractures of the joints. Her hand was bent & could not move & her right side leg did the same. She lost at least 40 pounds and developed low sugar problems first, then her skin broke down. She went into hospice just 2 weeks before she died. It was horrible to watch her suffer so, but that just is no way to live. She lived with me for 12 years but after July 2008 we could not keep a health aide to care for her. She was not only a danger to them but to herself as well. She argued constantly with them & me & it was not good for my children to see. I didnt want them to remember her like that & I am sure she didnt either. This is such a horrible disease that effects people differently. For the short time my mom was in an assisted living I saw the people on her floor which all had dementia, but effected differently. It was obvious they all had it but different versions. Just give lots of hugs, kisses& try to let them know you love them. God bless!

Rosas daughter, I am glad you came and joined us on the forum. I hope you will stick around and share your experiences.

Mom is starting to have muscle seizures which will probably lead to contractures. She's starting to have some skin problems, but hard to know If that's the dementia or the diabetes. She can still swallow and her weight loss stabilized, but her appetite is diminishing. We just take it one day at a time.

Hi Carolina: Another problem that happened was she went into a diabetic coma 2 times. Being my mom lost weight & was not eating so much she was taking too much medication, so she then had low blood sugar. Keep an eye on that as well. That is when they sent hospice in to monitor blood sugar 2x a day. Take care.

specifically to Alan C.: you are just remarkable. I appreciate how you share your journey with us..You have inspired me and I am sure many others...I thought of you the other night when I watched the memory loss tapes and I think the guys name was Joe who was well aware of where he was at with the disease and where he was heading. I felt more sadness for him than I did Woody who was so content it seemed.. . always whistling, he just seemed happy in his skin.
Anyway thank you for educating all of us and know that you are prayed for and thought of so fondly!

Thanks,
kim

Thanks, bledsoe. It's a wild ride, but I've never had the steering wheel. Dementia eats our brains however it wants to. I'm very grateful that I can both share my experience, and often I can benefit from what others say. I know it won't last, but it's here for now.