I have been searching for over two years for answers to my now 59 year old husbands behavior changes
He has had 3 MRI s, first one showed brain atrophy, the third one showed no brain atrophy(apparently he is cured) we never got results of second MRI, receptionist said was “negative,”
(Negative for what?) he is seeing a neurologist, psychiatrist, therapist, and many other ologists. He is on 25 medications. So poly pharmacy is a big concern. When we mention it to the doctors they not only seem to… read more
Dearest Susan! So much to worry about!!! I am so sorry you are being so ill served by so many doctors! Getting a diagnosis for early onset is not something I have had to handle, but it seems to me it is probably more difficult because it no one wants to think that a 59 year old could have this disease, but there are people here who are caring for loved ones with early onset, so I hope you can connect with someone who has been through that process. But what I would say is that you and your husband need to choose one or two doctors to be your primary source of care management. Someone needs to look at the 25 medications your husband is taking and see if all of them are necessary or have any negative interactions with each other. With a diagnosis, your husband would also be eligible for SS Disability, which might help ease your concerns about him having to leave his job. And don’t keep this all to yourself - I understand the desire to keep this whole stressful thing from family and friends, but you are going to need ongoing support as I am sure you know from taking care of your mother in law. Start with one friend or family member - this journey is too hard to try to do by yourself! Sending you so much support and lots of hugs!❤️
Hi, Susan, and welcome. I endorse all that Rebekah has said, and particularly about rationalising your sources of advice and your husband’s medication. He may well have way more energy and competence than his current cocktail of medication permits him to display! As Rebekah says it is not at all uncommon to have doctors look for reasons not to diagnose dementia - age is one and the impact of the news is another. A survey here in UK as recently as 2015 found over 20% of primary care physicians reluctant to diagnose dementia and led to a massive right to know campaign. Here the diagnosis is a necessary key to unlocking a lot of the support mechanisms. I have friends who have been affected by this reluctance, and eventually it does resolve, but the anxiety caused in the meantime is a shame on those doctors who indulge themselves to allow it.
In considering your medical support, please ask around and try to find a PCP who has some knowledge of dementia and the leadership qualities necessary to help you navigate the various specialist inputs that will from time to time be required. We were very fortunate in that the doctor who took us through my wife’s diagnosis was such a person and I know from wider experience and reading here that they are uncommon, but well worth seeking out. Best wishes to you, S.
I also cut down on the amount of doctors as it got too much for both of us. We went to our local hospital's aging/memory department who did the original diagnosis through testing (like remembering words he's been told, drawing a clock face, etc) and computer tests. They then referred us to some follow up things (like a driving exam, which was a REALLY unexpected outcome and one my husband got really upset about---but he passed it then). We did pick one neurologist and worked with him for the majority (and referred us for the petscan), but due to his practice closing, we just work with our primary care physician now. After all, there really isn't much they can do except prescribe meds. My husband did not do well on airicept or namenda, but he takes zoloft to help with anxiety/mood and that is a good thing for me. I do also have Xanax for special times of anxiety (I give it 'as needed'). He hates taking pills so I just fill up a Sunday-Saturday pill holder and give them to him everyday (he also takes big doses of vitamin E, vitamin D, and pills for blood pressure and cholesterol. He thinks he's taking too much--but I just give him the handful and tell them he needs them for his health. If I left it up to him, he would never take them (matter of fact, he always says he already did take them and the Sun-Sat holder is my only proof!). My husband is STILL in denial after 5 years and insulted if I mention it. However, on the sly, I have told all the family, friends, church pastor, etc. so that they understand his behavior. I just told them he has memory issues or I said dementia so they understand and don't expect things from him or wonder about his repeating conversations. I think telling people helps both you and him....and you don't need a name--just say he's having memory issues or aging issues. You are not crazy-- you see it most because you are there 24/7. Our kids didn't get it at first....trust me; now they do and have become a big help with hi. I also do not let him drive any longer. No big discussion about it (as he would be insulted) but I just get in the driver's seat. If he says anything, I just say how much I love to drive. End of story. We are here for you and we understand, even though each story can be a little different.
My husband had a pet scan which really shows brain activity, or lack of it. Getting that test might help.
Thank you for sharing your wisdom and support. I will begin a search for an Alzheimers doctor. Fortunately, my husband seems open to the possibility of dementia. We just want to know what we are dealing with and get some sort of a since of a timeline in order to make legal and financial decisions. I'm so glad I found this wonderful group which is opening doors to even more resources. Hopefully I can return the support to someone else in need.