I invite you to log onto the home page - www.thealzheimerspouse.com - and read this week's blog. It is a set of my ideas on how we can get help to Alzheimer caregivers BEFORE they are ready for a nervous breakdown. Your input and ideas are welcome. Thank you.
Make this inclusive of all Dementias. When DH was Dxd with Vascular Dementia I went searching for information and support under that. I didn't know or even consider looking under Alz--he didn't have that. Also include or give a handout of local support groups, and online sites--The Alzheimerspouse.com, Ftd.;ewy Body, EOAD, etc.
I do live in landlocked Kansas, but fortuantely I learned to swim at the YMCA as a kid. I knew about the Alzheimer's Association of Central Kansas and Western Missouri from my years in healthcare communications. My wife's diagnosis and physician action mimics the description in your blog. Despite my wife's denial, I visited the local AZ association frequently, began to attend support groups and completed a series of by-monthly presentations about all of the important subjects mentioned in your blog. I believe that other local AZ associations must have similar family education presentations. I hope you hear from other AZ spouses about their experiences with their local AZ associations.
All at the same time, DH was dx and he lost his job, we thought we would lose our health insurance, income and our way of life.
The first few places I went to online only addressed the care of a parent. Not what to do if it is your husband and he is only 58 and you still have children at home. I was very lucky in that the place where DH worked set up a meeting and set in place our COBRA and guided me with SSD and the name of a lawyer if needed. I was lucky in that we were approved the first time out with the info I supplied. (I did learn that I was much smarter than I thought).
We had a week between the dx and the meeting at work and it was an agonizing week. I was sure we would become homeless.
Joan, the image of being tossed into a raging sea is spot on!
I've just joined my local Alz Ass group....so glad i did, met some lovely people going through the same journey. One lady just lost her husband after 15 years of caring for him till the end....she was an inspiration to listen to, so much to give and share with us. They meet on the second Wednesday of the month in an Retirees Autumn centre...last month we met at the presidents home of coffee and cake, lovely relaxed setting in her garden...They had door prizes, I won a homemade jar of Plum jam. Just to share and hear the stories, helps to make one feel we are not alone....there is support if you are willing to make the effort to seek it...I should have done that sooner. yes being tossed ina raging sea is spot on...knowing what I know now, I do feel we were let down by our Dr in the beginning of all this. Not enough information, just attened thos 6 monthly apps as was told for that MMS test etc...
When I was dxd with severe rheumatoid arthritis at 21 the local chapter of the Arthritis Association relentlessly tried to recruit me to speak at their educational forums and conferences because I did not fit the image of arthritis is only an old person's disease. I was young, vibrant, working on building a career and had not yet sustained debilitating damage to my joints, They wanted me to educate the public that arthritis strikes people of all ages and yes, even the young. Eventually as I was learning to accept my illness and the likely outcome, I volunteered to lead support groups for people who had recently been diagnosed with the illness. The Arthritis Association sent me to training (2 days) and provided a script, handouts, visuals, etc to use during the meetings. The information presented could NOT deviate from their approved teaching materials however the informal discussions and questions could be answered based on participants experiences. The person with arthritis was paired with a medical professional (usually a nurse) to co-lead the group. It was a model that worked.
Perhaps if we design the ciriculum , the educational materials, etc in partnership with the ALZ Association or other Dementia association we could reach out to neurologists, pcps, memory centers, geriatric care managers, senior centers, hospitals and get the information to those who need it. It would make sense to use the network and resources the Alz Asso has already established. We were one of those couples who didn't get a specific diagnosis (pre-senile dementia-what the hell is that???), no meds but advice to buy pepper spray in case DH got violent. I would be willing to contribute to the ciriculum since it is sorely needed.
Julia, so pleased that you have joined the Alz group & will be able to share your burden with others who understand. This (Joan's) site is a true lifesaver but face to face contact occasionally, is good too. LFL, what a strong woman you must be, to care for your DH when you have RA. I too have that and now,often wonder how I managed to survive what I did with my DH. Must be love!
Cassie, I should have joined a long time ago....it might have helped me to get through all the tears and sadness better / quicker. Face to fce conact and the hugs from those who have been or going through this is special.....but thank goodness for the support we get here. Being Aussie you would know of Ita Buttrose, not sure what you'd call her, perhaps Patron of ALZ...she goes around doing talks to Alz groups like ours, I missed her last one.
Over the past year 3 women in our area (a social worker and 2 ministers) put together a 6-week curiculum titled "Grief on the Installment Plan". It was designed for spouses taking care of loved ones with chronic, terminal, illness such as Alzheimers. I was one of the spouses asked to take the course and make suggestions. It was very well done, and the 5 of us who took it still get together at times. I don't know if the curiculum is available for others. I'll try to find out. The leader is the site manager of the day care center my wife attends.
Marsh, great idea...no reason to reivent the wheel if we can modify what's already out there. I check the Alz Asso site and they have a lot of information that could be used in designing the ciriculum. I'm sure it is probably copyrighted.
Thank you everyone for your input. Marsh - let us know as soon as you find out about that curriculum.
Carosi - yes, all dementias. And actually, as I mentioned in the blog, there should be informative seminars on ALL illnesses that require long term caregiving(Diabetes, MS, ALS, etc.).
Joan--I think the problem is that doctors generally don't refer new diagnosed patients to any type of support. My local Alz Assn has been working on this for years, but I don't think they're making much progress. Docs are concerned with the medical aspects, and now with them receiving less and less reimbursement from the government (read Medicare) I think it's unlikely that they'll be willing to go the extra mile. But I have always felt that the point of dx (the doctor) should be where the first referral is made.
Joan, I asked about it yesterday. Anne said it is not ready for release yet. Needs a couple of more pilot trials. Since they don't have any planned, it will be a while.
Doctors should provide handouts to patients and caregivers at the time of, or very shortly after, an AD diagnosis. This handout would provide general information about the stages of the disease progression, where caregivers can go /who to contact to join suppoort groups, helpful internet websites like this one to check out, a few books to read, etc.
How long will my friends and family be able to continue to support me in what may be a long and difficult journey? I consider my DH and I to be very fortunate to have a a strong circle of family and friends who care deeply and are there for us to help in any way. They invite us for dinner, pick up and take my DH out drop whatever they are doing and come by if my DH or I want company. They have lent an ear and compassion to me whenever I have felt the need to talk. And so on and on. As grateful as I am, I fear that at as the Ad progresses, they will also get burnt out. So right now, they are providing the help I need but I know I must be on the lookout for other sources of help and comfort. I don't want to ever lose my friends and family to this disease too. I will always need them.
Fortunately, Lorrie, THIS site will always be there for you!! Did that support group meeting you attended prove worthwhile enough for you to return? Anything closer to you in Staten Island?
Yes, I went to a spouse support group at the NYC chapter last week. It was kind of a surreal experience for me to meet AD spouses face to face for the first time. They were welcoming and the discussions were frank albeit somewhat disturbing. It meets twice a month and I will go back.
Joan - I think that is an awesome idea and would definitely collaborate on some curriculum. It would be nice to know that all this experience did not go to waste and that I am sharing with others on this journey. Especially those with early on-set... Shannon