I invite everyone to log onto the home page, and click the first link under Breaking News to read about Marilyn and her husband Steve. "Alzheimer's Experts- Don't Hesitate to Get Paid Help".
Before everyone gets up in arms about not everyone being able to afford paid help, you need to know that Marilyn addressed that issue in the interview, but the editors cut out that part. (I know how it goes - I've been interviewed for print articles, and believe me, they cut what they want to cut). Anyway, Marilyn passed my concerns onto the reporter, who contacted me, and if we're lucky, we can get them to write an article raising awareness of all of those people who do not have the money or long term care insurance to pay for in-home help.
I saw this posted on our friend Kris B's blog today- did not realize it was you and your husband. Kris lives in Georgia and was diagnosed with early onset in 2003. She said she served on an Alzheimer's committee with you and Steve a few years ago.
Kris said you are a lovely couple. Good article & great pictures of both of you.
Trish--what a small world. Kris was the very first person who contacted me saying she had seen the article--when I opened my email at 7 a.m. this morning--there was already a message from her (she must be an early riser)! She and her husband Ralph attended an "Alzheimer's Summit" in Washington, D. C. where Steve and I met them. She is an amazing woman, still doing Alzheimer's advocacy years into the disease.
Thanks for the kind words on the picture. The photographer was very professional and exacting about his work--kept moving us around because the sun was shining on Steve's head--lucky that he caught him in a good cooperative mood!
Emily--I spoke with her years ago about a clinical trial for Steve, but ruled it out--to stressful for him (the trial); too stressful for me (driving in DC). She sounds like a good resource to have in your corner.
A really nice article! I am just starting to look at some options for care for my husband while I am at work. Although he is OK alone now, I am seeing much more memory loss and confusion. I am committed to working, need the health coverage for myself and my youngest son. (DH (58 yrs old) on both my policy and medicare. I am wondering if anyone here has any insight into the CLASS act portion of the new health care reform plan. I haven't had a lot of time recently but I recall reading that the plan had a voluntary insurance program for ALZ and related diseases. It was supposed to help with in-home care. Has anyone been following this? Would this CLASS insurance help defray the cost of care like the kind that marilynnMD is providing for her husband? When will this portion of the health care reform be available? Any info that the members here have would be appreciated.
My impression about CLASS is that it's more made to look good than to be helpful, but every little bit helps. Someone, prove me wrong on this.
As someone who's gone from one morning a week, to two, to three, to short visits every morning and evening as my husband has become bedridden and I can't maneuver him myself, I can attest to the marvelous help of having someone coming in. (if it's Andrew, yes in spades, but even someone else would be better than no one) For me, because of my husband's incontinence and age, I was more comfortable having a CNA, than just a neighbor, but if you can find a neighbor or neighbors who can help you with the worst part, or someone to come in to clean every now and again - even a neighbor kid - every bit you can do helps. I was struggling with the idea of how to deal with spending down and splitting assets and so on, and finally one day I thought, I can do this if I have help. And the help yes, costs money, but nowhere near what it would cost to put him in a facility. If your income is low enough, you can get medicAID help in the home, and if your spouse is far enough along you can get some help from Hospice which is paid for by medicare, although you'll still have to foot some of the bills.
Isa, sounds like your husband is at the point where day care would be helpful.
Remember all, Medicare, which most of us have, does not pay for "memory facilities". It will pay only limited amounts for nursing facilities before you have to go on private pay or medicaid.
Isa--I believe that Health Care Reform includes a voluntary form of Long-Term Care Insurance, which is the only type of private policy that pays for services like daycare and in-home help. However, when I researched it, it sounded like you need to be working to participate (which would mean you may be able to buy coverage for yourself). Anyone who already has an AD diagnosis, such as your husband, would not qualify.
If your husband is early stage, an adult day program may be the best option. As the article said, it would provide more social stimulation than in-home care. Plus, sooner or later, every aide calls in sick, etc. and you can be left in the lurch, even if you are using an agency. (They are supposed to provide a substitute, but I've found that doesn't always happen.) The beauty of daycare is that they are always open, you don't have to rely on one person showing up.