I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about raising awareness of Alzheimer's Disease. Sadly, not much has changed in the 5 years I have been advocating and raising awareness. I thought it had until I read Pris' disheartening statement in the thread about her being told that you don't die from Alzheimer's Disease.
In the blog, I have written what I think the public should know and why they should know it. If you have any comments, suggestions, ideas, opinions, to add, please post them here.
Sorry....I just posted under another title about my feelings regarding the lack of knowledge by Hospice concerning AD:
Include the Hospice personnel in not understanding AD into the mix. First, hospice is wonderful and I don't know what I would have done without them during my dh's last couple of weeks. However, and I did tell the hospice this, I was really taken back by how little the nurses, caregivers from hospice understood AD. They so misjudged my dh's condition and thought I was a woman with a big imagination and my dh was not nearly as bad as I kept telling them he was.
Of course, EOAD often moves much faster in the final stages then regular AD...and they didn't have a clue about that either. Hospice is so use to dealing with cancer patients and the AD patients they have are most in their late 70s and 80s. In fact, the group of hospice I had told me this was the first time they had had a person 65 years old with AD. My dh also had a severe heart condition. At least when the hospice doctor came and told me I would now be facing the "end of the end" and took my dh off all medications and I had a nice little talk with him about their lack of understanding EOAD he agreed with me and he thought they needed to have some training programs on this condition and he felt within 10 years they would be seeing more AD people than people with cancer.
Judith - I added your comments to this thread - joang
Wow, great statements you made there Joan! So much said! Such important messages you included! I just wish your blog could be required reading for so many politicians, Doctors, research agencies, etc. I wonder how many have even accessed your blog, or just who cares. I saw your blogs, and was overjoyed to find someone that did care. Thank you so for all you do and all that you have already done. So many of us have been comforted by what you have created here for us. We all need to encourage all whom we know to read your words. I, for one, will do my best to inform others of this website. (hope you are improving, and things are getting better for you.)
Isn't it just crazy that our DH's can be deemed 'healthy', able to walk, eat, use the bathroom, and appear to all those who look at them to seem just fine. The rest of the story just gets past them, and they never ask about it, or just don't believe it, or don't want to indulge the story. AD is just not understood by so many, even those we share our experiences with. All of the dilemmas we go through with them, knowing they are even in late stage 6, yet they can still appear OK at a glance. Our hearts are broken, we are exhausted and at such a loss. Our efforts and decisions are just unknown to those who would seem to care. The degree of our need is just not understood. I, for one, wonder how much longer this can go on. To be this sick, and yet not be bed-ridden is only something we can understand, or not?? I think the lack of trauma or immobilization, etc., or just the duration of this disease makes most just turn their heads until it is over. Maybe some of this is why so many just look the other way to a more obviously appearing disease. We are certainly in the shadows anyway. I am glad my guy can still function in some ways, but there seems to be no way to determine the duration of his journey. I think that is what gets to me the most.
janny: You have just expressed what my feelings were for months if not a couple of years for my dh before he passed 8/28. I got so tired of people say..."He doesn't look that bad"...I just wanted to smack them in the face. And, I always said to anyone that would listen to me, I can handle this if I only knew what was next and how long it would last. But, that question couldn't be answered by anyone and I knew it when I would make that statement.
Even the Hospice people that were sent to evaluate my dh, because of a reference from the VA doctor, all of them said basically the same thing. "We don't believe we will be here very long...your husband is not that bad". I told all of them and kept repeating it until they thought I was a total nut case, "YES....he is that bad.....he is much worse then what you can judge by how he looks and his sweet smile to all of you and his pleasant comments....he is a very sick person.".....Well...guess what? Hospice had their first visit on May 15 and he died Aug. 28....a little over 3 months into their evaluation. It was a total shock to all of them up to about two weeks before he died. No one can judge how bad our spouses are except for all of us caregivers. We work all three shifts.
My only comment to any of the caregivers is if your spouse starts a fast down hill slide and doesn't level off...you might want to be calling hospice for an evaluation. You are the one to make that call...you know their condition better then anyone and don't let anyone tell you differently.
Claude went on hospice at Thanksgiving and the following February 26, he passed on. They also said he didn't look that bad etc.....
Janny said " I think the lack of trauma or immobilization, etc".... That is so true. I have a disabled parking permit as I have severe back and lung problems. I don't look "disabled" but I am constantly getting dirty looks from people when I park in a "handicap" spot.
redbud73086* -- people just don't understand about "invisible disabilities." Early on, when DH could walk, he still qualified for HC parking due to his MS and the great fatigue/mobility issues that come with it. He could not walk long distances and needed a space close to his destination. We'd get the same stink-eye from people who thought he looked healthy!
JudithKB* -- you are so right, we as caregivers know how bad our spouses are.
The need to raise awareness, particularly in the medical community, is paramount. As I have posted in various threads many times, despite keeping weekly logs of Clare's Alzheimer's symptoms and showing them to doctors at eah visit, my wife was misdiagnosed first with having stress, then anxiety, then depression for three years before being correctly diagnosed with Alzheimer's the month she turned 63. Clare never demonstrated classic Alzheimer's symptoms in the doctors' offices, and her MMSE scores were always very high. I was simply the 24/7 spouse caregiver, so what could I possibly know? However, more research is slowly starting to appear that validates the observations of caregivers as being even more accurate than quick screening tests such as the MMSE regarding recognition of Alzheimer's symptoms. Perhaps, over time, doctors will become more willing to attend to what they are being told by caregivers even if they do not see those same symptoms present during office visits and refer patients to Alzheimer's Disease Research Centers or Memory Disorder clinics for more comprehensive evaluations. That would allow more patients to benefit from current meds sooner ... as weak and ineffective as current meds may be ... and, perhaps provide at least a little more quality time for a little bit longer.
I really enjoyed hearing you speak , well done. I could hear the stress in your voice, despite the calm demeanor, and , your love for you wife is so wonderful. God bless you Marsh.