Requests, Questions, Enhancement Ideas? posted by Stormchaser @ 08:09 PM September 27, 2008

Stormchaser — Sat, 27 Sep 2008 20:09:14 -0000

I just wanted to say I wish this website was here when I went through this with my mother and father. My ordeal started in October of 2000when my dad had deteriorated so fast from untreated diabetes he had to go to a home, and from there it was 5 years of a living Hell. I never thought I would get through all the legal rangling, money issues, overbearing siblings as well as ones who didnt give a damn. I am the youngest of 8, and I was the one stuck holding the bag while the rest looked on. My mother was also no pillar of health, but I kept her with me beacuse my father was the combative one. My mother was relieved he was gone, because he was particularly abusive to her, which I had no knowledge of until I promised her he wouldnt be back. My father never forgave us for' turning on him ', as he put it (I was his favorite) and tried with his last breath to make sure my mother and I knew that he hated us both. I felt a duty to protect my mother, and we became very close, but my Lord, it was SO hard. There were so many days that if I didnt have her to give me a reason to get me out of bed, I might never have. She died only 2 weeks after my father did, but she outlived him, which is something she wanted. I miss her so much, I still cry on a weekly basis. But, ironically, if I had to do it again, I wouldnt have changed anything as far as my mom goes. It was really hard to watch her die in my arms, but she was home, with me , right where she wished to be, and I wouldnt have done it any other way. I suppose I havent come to grips with my father; I am still angry at him for so much . Maybe I can forgive him....someday. I always felt alone in my crisis and sorrow...now I know I was.... and am.. not. Thanks for being here. Sincerely, Susan Noble

Welcome to the Suggestion Box group! posted by Paula Spencer @ 04:38 PM June 23, 2008

Paula Spencer — Mon, 23 Jun 2008 16:38:53 -0000

Pam--thanks for your input. You're exactly right that there's much more to be said on the topic. As the site grows we are indeed adding more content that addresses other dementias. Meanwhile I hope you'll continue to share your insights in our group discussions.

Welcome to the Suggestion Box group! posted by pamtime @ 06:11 PM June 19, 2008

pamtime — Thu, 19 Jun 2008 18:11:54 -0000

Thank you Missy. FTD is little understood in the medical community and it is treated different than Alzheimers. The components we are dealing with are more behavioral, high cognitive functioning, and violence and aggression. Many of the medications that are effective for Alzheimers are not for FTD. Caretakers and care giving facilities are reluctant to care for FTD patients because of the violence factor. The executive function are of the brain in most impacted. There is a loss of social appropriateness. The patient needs to use the restroom, so there go where they are. Mom walks into Walmart with us and what to her was a friendly tap, punches the store clerk in the arm. The insulted store cleak informs her she is committing a felony assult. Mom pauses, looks at him, and punches him harder and calls him a baby. She may say very rude things to people because the filters that prevent most of us from being overtly rude are gone. We have problems with shop lifiting, obsesive compulsive bahaviors, such as watering the lawn 7 times a day. Cooking must begin at 3 dispite the fact we don't eat until 7. She frequently threatens her care takes with pulling back her fist. Medications help but really alot more patience and redirecting of attention and activities are important. I would really like people to know there are other dementias out there as devastating as ALZ and caregivers out there will little support from both the medical community or the internet community. I believe the prevalence of this dementia is more common than we would like to think and that some patients are just hallmarked wit h "dementia not othersise specified" that fit into this FTD profile. We need more education for the caretakers and resources in the community, and community awareness that fosters additional interest in the medical community. Thank you for passing this on to the editors. Pam

Welcome to the Suggestion Box group! posted by Missy @ 04:33 PM June 19, 2008

Missy — Thu, 19 Jun 2008 16:33:46 -0000

Hi Pamtime,

Thank you so much for your suggestion! I'm going to make sure the editors for Caring.com see it so they can consider it!

Welcome to the Suggestion Box group! posted by pamtime @ 04:06 PM June 19, 2008

pamtime — Thu, 19 Jun 2008 16:06:46 -0000

I just found this site. WONDERFUL> I am noticing that while I see Alzheimer's & Dementia... no information on FTD bettter known as Frontal Temporal Lobe Dementia, considerably less know but with similar symptoms and then add a whole laundry list of behavioral symptoms.. The behavioral symptoms are a hallmark for this disease. There is very little information or support available for this disease. While rare there are a number of people and caregivers in my area dealing with this dementia type. Would it be possible to add an additional subheading under the health category for FTD... The challenges of caring for loved ones with this disorder are monumental. I am sure people dealing with loved ones would add lots of information. In hopes that others would better understand it and the related behaviors associated with this specific dementia category. Thank you for having this list. I am really liking it. Smiles

Is something broken? posted by Chris @ 07:38 AM January 31, 2008

Chris — Thu, 31 Jan 2008 07:38:47 -0000

Please include the following bits of information if you think they might be relevant:

What browser are you using?
What page were you on (URL)?
What happened?
What should have happened?

If you don't want to post it here, you can send an email to feedback@caring.com

Thanks,

Chris

Is something broken? posted by Chris @ 07:35 AM January 31, 2008

Chris — Thu, 31 Jan 2008 07:35:00 -0000

If you've found a problem on the site, please bring it to our attention. We'll try to get it fixed ASAP.

Welcome to the Caring.com Groups! posted by Kirby F @ 06:00 AM January 31, 2008

Kirby F — Thu, 31 Jan 2008 06:00:15 -0000

Welcome, we're so glad you found our site and our new groups.

Please, use our groups to meet other caregivers. Ask those who are really caring for their parents to help with suggestions and advice.

And, after you've had a look around, come tell us what you think.

Requests, Questions, Enhancement Ideas? posted by Kirby F @ 05:55 AM January 31, 2008

Kirby F — Thu, 31 Jan 2008 05:55:59 -0000

Scratching your head about something? Want to get to know your fellow caregivers better and have ideas for how?

Share your comments, questions, and suggestions here.

We're all listening: the product managers, engineers, editors, and designers.

Give our Groups a try and tell us what you think.

Welcome to the Suggestion Box group! posted by patrick @ 05:33 AM January 31, 2008

patrick — Thu, 31 Jan 2008 05:33:10 -0000

We're glad to see you. Please feel free to ask us anything you'd like.

Recent Posts | Caring.com