I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about my upcoming trip to the Washington DC Advocacy Forum. After you read the blog, which explains the emotional type of message I am looking for, please post your responses here.
Joan- Legislation I would like to see is a Hippa law exemption, so that caregivers would have immunity from the blockades that his hippa law currently has. As our loved ones find it more and more difficult to express themselves properly, I find it very inconvenient to have to produce all the medical forms with POA documents, etc. A simple EOAD exemption would greatly help caregivers....also, since Social security does not recognize power of attorney, caregivers are pretty helpless to help them file disability claims...The representative payee only applies to those who are collecting social security benefits...there is no recourse to file a new claim in their behalf...
Long-term care is an expense that is bankrupting many families, especially those with no long-term care insurance. There should be some way to add this benefit to Medicare, so our loved-ones don't have to lose everything and go on medicaid.
Let them know that AD has destroyed my life, my dreams for the future, my husband's mind and body, and that it is inescapable Hell to watch a once brilliant, healthy, vibrant human being regress to nothingness.
A couple of years ago, you had a blog about an artist who drew pictures of himself as he was progressing into Alzheimer's Disease. I looked it up - January 2008. Show them those pictures. No words needed.
I think bj is on to something.If only we could find a way to show the destruction of the person as this ugly disease goes on. There is so much done for other diseases, some of which are self inflicted, but this one.... The financial hell of this disease is something not too many really understand and there is no way to paint a picture of our won fear of how to preserve what we have..being spent to poverty to care for someone in this situation, leaving the survivors wondering how we are going to survive is beyond words.
There needs needs to be support for family caregivers. Legislators need to be aware of the huge amounts of money that family caregivers save the government by caring for their loved ones at home rather than putting them in nursing homes on medicaid. Then they need to find ways of using a small part of that money to provide respite, in home assistance, and even pay for family members who take care of AD patients at home.
I have been thinking the same. Sandra Day O'Connor talked about that at the 08 Senate Hearing. She was able to pay for the best care for her husband, but she saw so many other who were not, and she spoke up on their behalf.
I am exhausted and on my way to bed, but tomorrow I will look up the exact name of the new government commission on AD, and what it is supposed to be doing. I will find out a lot about it when I am in DC, and will report back.
bj gave me a good idea. I am going to print the pictures by William Utermohlen,the artist, and bring them with me. I need permission from my chapter CEO to show them to the legislators - hopefully she will allow it.
my husband was diagnosed 1 yr ago in febuary he is 56 he was showing symptoms for many years before he was having problems at work problems that he hid he didnt want anyone to know he had several friends that got him out of problems he found himself in when he was diagnosed i told the dr the kinds of thing he had problems with things like going into the wrong apartment and fixing things that werent broken and getting shocks from electricity while doing electrical work you see he worked in a maintence position in a college when he went out of work they had no short term policy so he used vacation and sick time he had accruded he was approved for ssd but had to wait 6 mts but his long term denied him we appealed and sent phyc info they denied again and said it was the last time we could appeal he was general maintenance manager when we got the deniel papers back we found they had changed his title to maintenance custodian and said there was no reason he couldnt do his job of course the change took him from a job where he would do floors and clean instead of what he was doing plumbing and electrical we brought stuff to a lawyer and here we sit we lost his insurance and whatever the differance in monies would be i have gotten insurance from my workplace not nearly so good and meds are more expensive he worked hard all his life and by the change of a title changed all he was entitled to
I am printing your post, and will bring it with me to DC, but I am also going to put it under it's own topic, and ask Jane to look at it. She may have some advice for you.
I concur with two of the above suggestions: Show William Utermohlen's self-portraits if you can get permission. Change the HIPAA laws as relates to AD patients. Just found out that HIPAA prohibits my primary dr. from giving us a copy of my husband's test results forwarded to them by the neuro-sciences facility where they were done.
Change in HIPPA laws, recognition of DPOA's, federal/local services to assist families dealing with EOAD/Dementia (no services are available to us because we are under age 62), understanding of the crushing financial obligations associated with caring for a LO with dementia with the very probability there will be no financial resources left for the surviving spouse, lobbying insurance companies to recognize EOAD/Dementia as an acute illness, not just a "chronic" illness to be dealt with in nursing homes, incentives to caregiver families to keep person at home, the devastating financial impact because the "well" spouse must leave his/her work prematurely to care for EOAD spouse.
thank you we are managing but i am behind in a lot of stuff i will deal . another thing he still drives some mostly with me with him he seldom goes without me another reason why met life refused him sad ! in my infinite wisdom i have bought paint he does some of my rooms in the house and moves on so im getting to help him go back and finish rooms at least its something he can do without much help for now but it is interesting what i find sometimes when i get home thanks again for taking our story
I answered your concerns on the thread that Joan started with your above post. Getting approved for LTD really dpends on how the company defines disabled.
I'm also going to the DC forum and will be speaking to members of Congress, as well. Thanks to everyone for their suggestions on this thread, you have given me some ideas.
Early-onset Alzheimer's patients' families desperately need help. I took care of my father and my husband at the same time whenthey both had Alzheimer's, and niether was easy, but the devastation that our family suffers due to my husband developing Alzheimer's in his fifities was far more long-term and complicated than the suffering we went though with Dad.. Early-onset families need education about the disease itself, training in care giving, legal and financial guidance, psychological support for the spouse and children, help with health coverage issues, someone to facilitate finding help for the caregiver at home, first, and then, most likely, in a facility. Really, all Alzheimer's patients and their families need this help, but the early-onset families are stretched to the breaking point. I ended up in a psychiatric ward for five days, and nothing like that has ever happened to me before. Debbie K.
I agree with all of the above. My biggest issue today is that there are so many challenging paperwork-driven steps that I need to take to get to some help - I need help in going through the paperwork. Someone said that I need a 'wife' - I do! I need someone I can trust to clarify so many things that I have to do for my husband. I take a baby step only to discover that there are forms to fill out, decisions to make about things I know nothing about. I used to feel good that I can deal with our banking, tax returns, etc until I am hit with all the stuff ahead of me. I am hoping to take advantage of a NYS program (long title - nursing home diversion is part of it) From what I understand, once hubby is accepted into the program, 'they' will have a case manager help guide us on what is necessary and available for him to stay at home as long as possible. I'm beginning to burn out - hanging on as best as I can until something can be put in place to help. I also worry about focusing our resources on my husband's care and not having anything in place for me if I need care. So, tell them to cut the paperwork, allow caregivers to have more freedom with regulations, provide some objective advice and guidance through the tough parts.
Thanks, Joan for all that you are doing for all of us.
Thanks so much for asking for our imput....I think the above posts have mentioned the major problems. I believe they have all mentioned the major points of EOAD. I wonder if there is any way that legislators could ever imagine this happening to to their spouse? Perhaps that would put it into perspective...........
buzzelenea, Please help me understand something you mentioned...your doctor cannot give you a copy of the tests from forwarded from the neuro? I do not understand this at all. I must be missing something. When my hubby has any kind of tests done, be it blood tests or sleep apnea testing, I make sure ALL his doctors are informed of the results first of all so the poor man is not poked any more than necessary and secondly so they all know what is going on. So far I have not had any problems getting copies of his records. I wonder if this has something to do with the doctors working more as a team in his case? It is terrible that you are not allowed to know the things you need to know to work with these doctors.
Mimi, the neurosciences center did fax the results to our PCP; however, the PCP says HIPAA prevents them from giving me a hard copy of results of testing done at another facility. I want a copy to read and keep. PCP can discuss the results with us, just can't provide us with a copy. I don't want his summary of the results. I want to read it and have it to keep. DH did 4 hours of testing that day and from what he could remember when he came out, he knew hard math and science stuff that he learned in college, but did not know who was president before Obama or what day of the week it was. If PCP is going to read it and summarize to me that DH does not have Alz because he knows what the speed of light is, I'm not having it. The reason we agreed to the additional testing is because PCP is new to us since the Alz diagnosis and he does not think DH "presents" as a person with Alz. I think I will "present" DH to live at his house for a week and then see what he says. Sorry I went on so long with this answer.
Can't you contact the facility that did the testing and request a copy from them? You can sign a HIPPA form for them if they need it....???? Just an idea...
Yes, and I have now done that in writing by mail. It's just that the testing facility is an hour away from us and I was trying to avoid the two hours on the road to sign a release. And I know there is a fee involved and they will have to call me with an amount and I will have to mail them a check before they will mail them to me. The testing was Feb. 18 and I have been trying to get results and mostly getting the run-around ever since.
How about adding an allowance to the SSDI for the caregiver after say, stage 6. That way we can afford to give then the care they need when they can no longer function themselves.The missed work/quitting work is hurting our ability to do the best we can for our loved ones.
And extending the help of places like area agency on aging to anyone disabled would also be wonderful.As it is, my husband is in stage 7 at age 56, and it is hard to find services at this age.
After handling my husband's affairs since his diagnosis, I can't imagine what it must be like for someone in their 70's and 80's to try to negotiate all the government red tape involved in trying to get Medicaid and SSDI, Bless all of you!
And don't forget not to let up on your congressmen and senators at state and federal levels even after the summit !
dkinerk and sally--you have both brought up points that I have experienced and will add to my talking points for tomorrow. My Dad is 95, and I am still involved in his care simultaneously with my husband's. People with older onset AD are less likely to face the dual caregiving situation.
Sally--What is it about the never ending paperwork? I haven't heard anyone else address it like you did--but it's been a big issue with me since day 1! I worked for the fed gov't for 32 yrs, I'm certainly familiar with paperwork. But since my husband's dx, it has been a huge burden. I think, basically, that it is worse for an EOAD caregiver because we weren't in the retirement mode yet. So there were all the steps that needed to be taken to make up for my husband's lost income (unemployment benefits, SSDI, converting nestegg from investment mode to income-producing, new tax situation, etc.); deciding whether to stay in our home or move; selling a car; and on and on. Someone older with this disease may already have done all these things, may be living in a retirement community and receiving social security, so there are fewer complications. How to reduce the paperwork? I would have liked a case manager or consultant specializing in this to be provided by the gov't.
I think we caregivers should get some sort of tax credit. In some ways, dementia caregiving is like raising a child, or even, a disabled child. The gov't provides schools, transportation, child care tax breaks, etc. for people with children. Yet, nothing is available to us in terms of a tax break until the medical expenses kick in, in most cases, during the later stages. We are almost 5 yrs post dx, and have yet to have any type of tax break.
Marilyn, I ditto your remarks. On the other hand regarding not many reporting about paperwork, etc. My husband was over 60 when he was diagnosed. Around 64. I had assumed leadership many years ago because he seemed to be unable to do so. The paperwork following dia. in our case did not increase my paperwork load by very much. We had so many situations going on most of the time it was just another "blimp" in the road of life for me. That said, I did not have to deal with vet. affairs, medicade and many other situations many here are dealing with.
Lois, you were actually at an advantage because you were already in charge. I wasn't. Since my husband was a CPA, he handled all our financial transactions, and consequently, most of our personal business. Prior to dx, he put up such a good front that I never suspected his abilities might be failing. He was really good at covering up what was going on. (The professionals call this "compensating".)
Right now I can't find a job when I still can work. Won't be long before I won't be able to because of caring for him. What my mind goes to is that I am not working and adding to my social security. I am 57 - what if he dies earlier than expected or is in a facility and I am too young for SS? What if I am disabled and it has been more than 5 years since I worked so do not qualify for SSDI? (it has already been 2 years of not working).
buzzelana - I had no problem with SSDI. I filled it all out, gathered all the info. There is a place to check that it is the spouse filing for them. All he had to do was sign the application and go see their doctor.