I attended an Alz.org meeting today that was aimed at informing the care giver to take care of themself.
I think there is something wrong in the medical community. The information I was given today I got 2 1/2 yrs into this journey. It was the efforts of Alz.org to inform the caregiver that got the information out. It seems odd that when the Dr. delivers a diagnosis they should also be prepared to support the caregiver with information of what lays ahead. This disease causes so much damage to the family structure and yet the medical community does not address the issue. The industry should be much more proactive in dealing with the issues. I do appreciate the information given by Alz.org I just wish they info would have been delivered much sooner in the journey.
I, fortunately, didn't have that happen to me, moorsb. When the diagnosis was finally given, an appt. with the social worker at the hospital was given to me right away and from there it went to another center in the hospital where I received info. regarding what could happen to me. That year I was also asked to attend a Take Care of the Caregiver group meeting once a week for six weeks. Workbooks were also given to us, which I am able to refer to again and again. His neurologist also is available to me 24/7, if needed, which is a comfort. I at least know I can call her when necessary. But, the biggest help is this site right here.
You bet, Charlotte - this is the best school ever! I got zilch at DX from Dr. I did get some information and help from the Aricept people though. They were wonderful to me and kept calling to see how I WAS too.
Our neurologist told me to "go home and look it up on the internet". The neurologist at WVU gave me a copy of "The 36 Hour Day" and the number to the Alz. org. All my other education came from hands on training and this web site.
I totally agree, Bob. There is not much attention given to the caregiver. We are the ones who are going to bare the brundt of the journey. I just switched DH's neurologist, and last Friday we met with his new doc. We loved his past neuro, but he didn't specialize in dementia, the new one does. She was very helpful and spent quite a bit of time with me, talking about my needs. Hang in there!
Oh..I remember that day. Diagnosis day..finally.. The neurologist made the pronouncement..excused himself.. left us to sit there in his office staring into space and came back with 5 pages he had copied off the internet. SUGGESTED that I buy the 36hr day. and off we went. Oh, about resources? He didn't know of any but we could call the Alz. ASsociation. No social worker no care plans needed.. I felt better knowing that I wasn't crazy, that something WAS wrong.. but felt there was still NO help at hand. AT that time it felt like every other disease had supportive and proactive programs but Alzheimers had nothing. Books on the subject were at least 10 years or more old.. Today I think there is better information and maybe the medical community is coming along not sure that everyone is as lucky as BEV to get good information and good support from the beginning. This is the richest resource available in my opinion.. Thanks to all
The first neurologist told us nothing. Just gave us a script for Aricept. The doctor my DW was seeing to treat her Post-Polio Syndrome looked at the MRI and didn't think it was Alzheimer's. Our PCP read us the report that the first Neuro wrote and said it was Alzheimer's.I didn't know what to believe. I figured the next doctor we saw might say she had fleas. After finding yet another neurologist, he thought it might be depression or pesudo-dementia. After ordering a PET SCAN and the neuro-psych tests, he said it was in fact Alzheimer's and that he could treat it! Then my DW had a bad day, fever, confusion etc.... Took her to the ER.. they said she had NPH. And then a 3rd Neurologist at Columbia examined the films and reports and examined her and said yes, this is AD.
Not one said a blessed thing about how it would effect me/us. I guess they think it is not their job. You know, they just practice medicine. I/we need some who knows how. I'm a trained classical musician, when I did a recital I wasn't supposed to practice, I was supposed to perform and create music. I was astonished that there was more talk about me seeing a Lawyer, then getting the best treatment for my DW and taking care of myself. Good thing I found this site. Thanks to all of you and much thanks to Joan.
I agree, Judy et al. No supports from pcp or neurologist, although the PCP was happy to send us along to the neuro when I said something is wrong here, four years ago. The Neuro didn't even have many pamphlets in the waiting room or notices about anything other than drug trials. I went first to the internet, then the alz. association locally - there's not much hands-on there, although they do sponsor occasional - VERY occasonal - lectures, at one of which I learned that I needed to consult an eldercare lawyer, and did so. We had incontinence very early on so I found Bigtree Murphy and then this site, and from then on this site was almost the only resource I had .
HOWEVER, about a month ago a friend sent me a note about a study of telephone support for CAREGIVERS of dementia patients. I was leery about needing any support; my husband was plateau'd, I had all of you and years of experience by now... but I figured whathehell, so I called them up, went for an interview first with a clinical assistant filling out a long questionnaire, then with one of the initiators of the study. They gave me a big binder filled with everything from the AZ Assn site plus some local info. But all interaction with them was to be on the phone. No internet.
The deal was, they'd have a trained therapist (no interns here) phone me once a week, first for an hour, then for half an hour then gradually for every other week.. for six months. I was still a bit leery but the first phone call went very well; the therapist knows her stuff with dealing with dementia, and it was good to talk to her. The next week the same. By the third week L. had fallen off his plateau and things seemed to be falling apart and I was very glad to have someone to turn to. This week, with Hospice set, my phone call was more relaxed but I was still glad to talk to her. Mentioning meds was interesting: she knew them, she knew about ignoring black box warnings, etc. My favorite advice was that when I complained about L's constant noise making she suggested getting earplugs (which I heard as earphones and then listened to Mozart while he hollered)..
I will give the study high marks, that someone is really trying to help those of us on the front lines. It is LOCAL at this point; you have to be from "around here." They are paying US $25 for each of five hour sessions.
This is one of the most critical issues that has yet to be addressed by the medical field. Whne a diagnosis of probable AD is made, those diagnosed should be steered towards a good support group, same for their spouses/caregivers, and all should be given something such as the new book by Lisa Snyder, Living Your Best With Early-Stage Alzheimer's. It seems we all find out what we need to know much later than we should have ... after we find out about and get into support groups or learn about sites such as this one. Wouldn't it be nice if we learned some things right at the outset of this journey?! I actually have an editorial coming out in a forthcoming issue of the American Journal of Alzheimer's Disease and Other Demnetias that makes this very point. If just one doctor reads that and makes a change in his/her practice, I'll feel good!
My DH's PCP was a friend of his and the diagnosis was more of a foregone conclusion just by the symptoms that I relayed to him and his talking with DH. He did a few tests and we settled for the diagnosis. There is no doubt that he has Alzheimer's. I got all my info from the internet and only stumbled onto this site by accident in looking up something else. SO glad I did. Our children have been bugging me to join a support group and may still look into but this has been the best help.
When DH was Dx'd with his Mrntal Breakdown. Dr. told us Schizo-Affective Disorder, put him on Haldol and said," apply for Disability, come back in 2 weeks, keep the household running as normallyy as possuible, and call if you have problems. Did all that and went back 2 weeks later. Reported that suicidal thoghts were controlled but he's only cat napping 4 hours out of 24 and requiring hours (10-12 or more) daily of counselling with hi to fight the runaway thinking. Was asked, "Why didn't you call, if you were having problems.?" My answer, "I know nothing about this problem or the med. How was I to know we were having problems?" Some years later DH complained to his Psychiatrist that his memory was getting bad. DR. gve him a 3 month packof Aricept. "Try this. If it works you have Alz--if not you don't." It didn't. In 2006, after a second major eletrolyte dump, he was hospitalized and sent to the Pych/Md Unit for a med. adjustment because he'd been exposed to certain meds for too long (18+ years). When working to change his meds, Dr.s ran a neuro-psych test to determine exactly what they were treating. Vascular Dementia. I was handed brochures, set up with Agencies to provide his Psych Care and physical care. Case workers from those mentioned respite time and taking care of myself. Finally, after seeing that I only asked For respite time for my medical appointments, one of the Agencies set me u[ with 4 hours of respite per month and I am to call if any is needed for medical appointments. I knew from my caregiving DH in the late 1980s that it was important to take care of me. It's just hard to do when you have an ill spouse , a child to raise, a home to care for, and Disability and a Comp Case to fight. Would have been nice to have had ti me to read all the brochures--later when I did they were of no help for where we were. A case worker who knew enough to connect me with services would have been nice. I found one support site on the Net and a fellow member there urged me to come here. One Case Worker pushed and prodded me to use respite time and then set up my 4 hrs a month with the admonishment to use it or lose it. I tell all I feel might need it to get and take respite time and refer them here if appropriate.
I am finally going to write a post that is positive. Though it took almost 2 years to find a Dr. who would listen, traveling over 1,000 miles to the Mayo clinic was really an amazing experience. Doc took less than 20 minutes to interview wife then me. He then told us the diagnosis and was clearly surprised DW had not been diagnosed until then. He then asked if I could come back that afternoon to meet with his nurse educator because he wanted to make sure I got up to speed on what to expect. When I came back, they made arrangements to have someone watch my wife for me while the nurse spent almost 90 minutes with me telling me what to expect and what I needed to be prepared for. I left with an arm load of information and felt very much like they cared. Prior to this appointment, I had arrived at the same respect for the medical profession as GG. The Mayo clinic and then the new Doc I found when we got home gave me new faith. Thenneck
I probably should not have said I "HATE" doctors... but I do have a lack of trust in them now.
We were sent adrift in the sea with no paddle, no map, a leaking boat in the middle of a storm. I understand there really isn't much they could have done medically, but they most certainly should have known enough to give us information what other resources were available. The second neurologist we saw was actually "upset" and his voice cracking when he gave us the DX. My DW reacted with a very detached emotional reaction as it this were happening to someone else. She told me in the car on the ride home not to tell anyone in the family. I was in a state of shock and racing emotions that at that moment, I could not control. There was no help, from anyone for anything. I had to rely on myself. I thank god for this site and for all your support and comments more than I could ever express.
Ann, I agree. When things just stop making sense you stop thinking that maybe you're the one who's confused and realize that yes, there's dementia present.
After DH had days of testing at one of the regional Alzheimer's research centers, we were called in to get the results. The doctor rambled on for a little while about his recent camping trip, refused to answer any questions at all, and then left the room. A couple of minutes later a social worker came in and advised us to go get our wills and medical powers of attorney drawn up. That was our entire "informational" appointment. (When I read the doctor's notes later, he said that he "counseled" us for 20 minutes!) We weren't even given a brochure to get us started in looking for information. DH's sister, who is a nurse practitioner with over 20 years of experience, went with us because I was afraid that I wouldn't understand or remember everything that the doctor was going to tell us. She later called the doctor's behavior "bizarre". The doctor is well-known in research circles, but I think if he's not comfortable dealing with patients, especially at the time of diagnosis, then he shouldn't be seeing patients!
I think it's a shame that a disease like this, which is about the equivalent of a bomb going off in your house, is also a disease where you get the least information about what to expect and what the diagnosis means. I know that each patient is different, but there are some generalities that they could discuss with us. Since the tests the doctors performed cost thousands and thousands of dollars, it doesn't seem unreasonable to think that they could have given us at least enough information to get started trying to figure out what to do.
I remember begin hungry for information, scanning the internet, checking out all the books in the library that I could find (I didn't do a very good job; a year later I found a lot more, books that really helped.) About six months after diagnosis the neuro suddenly said "Have you been to see our care consultant?" Now how was I supposed to know there was such a thing if he hadn't told me? Took me right in to see her. But did not arrange for anyone to watch DH who was soon kicking up a ruccus in the waiting room. By that time I had read a lot and knew a lot. At a subsequent appointment with the care consultant she encouraged me to send DH to day care and recommended one that would suit him best. (She runs one herself, for early onset which we didn't quite qualify for.) Once DH got into day care, that facility appointed a case manager who is my most valuable resource now. Debora knows all about applications, respite possibilities, all the day-care and residence facilities around (which are good and which to avoid) and is always one step ahead of me in planning for the future. She will stay with me even though I will be sending DH to a different day care next month. In fact, she suggested and engineered the change.
Jeanette, how wonderful to have someone to help you through all of this. I had an appointment with a social worker one time....she came to the house...looked around and said you obviously have too much money to qualify for anything.....! She did say that after my husband reached the age of 65 there might be more help for him. Well, he died at 61......It would have been great to have someone who had information and suggestions....as it was, I just muddled through.
I was fortunate in that all of the doctors connected with my husband were very kind to me and offered whatever support and help that they could. They always reminded me that I had to remember that I was the one with a future and to not let myself get so wrapped up in the "bad" stuff that I forgot about me.
I really think that there are not that many professionals who know much about the day to day stressors that we go through....they must gloss over that part in medical school....or, since there is no cure or treatment, it isn't very glamorous.....
neuro didn't even tells us what he thought it was - just advised me to get pepper spray in case DH became physically violent again, and put him on Namenda and sent us home. No information about diagnosis, resources for DH and/or me. NOTHING. When I called the office to find out what the diagnosis was, I was told pre-senile dementia. That was it. I found all the local resources (no help really - DH was too young for Area Office for the Aging) by calling around and researching on the internet. To this day none of his doctor's have ever spoken to me about the importance of caring for me.
My husband has had the extensive neuropsych testing done three times. The doctor who did the testing talked to me alone to get information about DH. The last time we were there, when the diagnosis was changed from MCI to probably AD, he asked how I was doing. He's the only one who has asked. The neurologist DH sees every six months handed me a copy of "The 36 Hour Day" the second time we went. She didn't say anything about it - just handed it to me. Like Jeanette, I went to the library and checked out every book they had. I also spent a lot of time reading on the internet. Most of my knowledge has come from this site.
I think most of us here are intelligent people who know how to find information. I really wonder about people who aren't. How do they manage when doctors are so unhelpful.