Oh boy Jean! This is a loaded question. Caregivers give billions of dollars worth of care for free each year. The toll it takes on them is immense and there is evidence to support the fact that they often have illness, severe depression and may actually die before their loved ones. If you know a caregiver, offer help, contact churches and civic groups to help and write to legislators about the need for more respite funding.
Jump in - if you have a question for Lonni, use the box above this chat to ask!
If you contact the Alzheimer's Association, they can provide you with information about how to support caregivers and how to let your legislators know that they need help. This is a problem that isn't going away .. the population is aging, and many of us have a disease that has NO treatment, NO prevention and NO cure. It is insane to think that they our caregivers are not getting the help they need.
Jean, my advice to people who are worried about memory issues is to tell your primary care physician. There are many screening tools to help determine if it is normal aging, depression/anxiety, or something more. They can connect you with people who can help
Michelle, the most helpful thing friends can do is just be there, tell them what you are able to do to help, ask what they need. Show them support and kindness. Remember that they were once whole and talk about your memories .. they might not remember but we love to hear stories. Share photos and call other friends to see if they might be willing to do the same
My body is failing faster than my brain. Although my brain doesn't work right (I was just telling someone to day that I can no longer count money), my body is weakened, my balance is awful, I have hallucinations and trip over things that aren't there. My physical therapist said the thing I was dreading ... "we can accommodate the changes with walkers and canes, etc, but we cannot expect improvement" I am so active, that was devastating news for me
I fell twice this weekend. Its getting to the point where I will need more assistance.
Everyone out there reading ... feel free to ask anything .. there are no questions that you can ask that I haven't heard. Don't be shy!!
The beginning of this disease is a nightmare. Physicians doubt your perception of what is going on, especially if your younger (I was 58 at diagnosis). Navigating healthcare and insurance is crazy. I was immediately approved for disability, but because we live in a non-expanded medicaid state, I had to use clinics, so much of the testing and the real professionals were not available to me for two years. In that time, my decline was never really acknowledged or treated
If I could change anything about interactions with docs, I would ask them to believe patients when they say something is wrong. No one knows your body and mind like you do, and to be dismissive is disrespectful, frustrating and painful.
Lindy, hello!! the biggest misconception is that if you have dementia you are supposed to be completely forgetful and non-functional. Many of us are busy, active people who still have great purpose and find pleasure in many of the same things everyone else does. I am often told that "I don't look like I have dementia" and I say "I am the face of dementia" myself and thousands of others just like me are out there, looking for purpose and acceptance as we are.
Thanks so much to everyone for participating. We are going to wrap-up now, but feel free to check Facebook for other ways to contact me with questions.