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.

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.

Hello Susan,
I read your post and my prayers are with you and your family. I remember when my mother first began to address similar issues with my grandmother who was very reluctant at first to even listen to my mother as she informed her of the many things she was doing or saying as well as what the staff and residents at the senior complex she lived in were telling my mother. My grandmother has always been and still is a feisty woman even in her Alzheimer’s. It was a rough time for my mom who had to tackle this on her own, due to my moms only sister and sibling passing away several years before my grandmothers diagnoses. My grandmother loved to cook but when she forgot she was cooking and the fire department came she finally listened to my mother and a very compassionate doctor my grandmother had that was able to talk to my grandmother and help her understand what was going on. What I remember so well is, it was easier for my grandmother to receive the news of her early onset from her doctor and a few others but not my mother, not the person that adored her mother for being the most loving and strong mother a daughter could have , my grandmother fought my mother tooth and nail in the beginning to mid of her Alzheimer’s disease. Is it possible to do a little more research on finding a doctor that specializes in Alzheimer’s Disease. My grandmothers primary doctor referred her to someone that was well versed on the disease as well as taking a caring but honest approach towards explaining it to her. My mother contacted so many Alzheimer’s organizations with an array of questions on how to deal with the changes my grandmother was going through. Their is a wealth of knowledge out there, but please take care of yourself and make sure your ok so you can help your husband, try not to hold things in, express your fears and your feelings to close family and / or friends, let them also know you will need their support. There’s help and support out there for you and your husband and also you have your Alz Team. We must be here for one another to help each other cope and get through what this horrific disease brings and to also share whatever knowledge we have that may help someone else. I wish you the best of luck in finding the right doctor for your husband and I am so sorry that you are all going through this life changing disease.

Dear Susan, I’m so sorry to hear what you’re going through. Like Rebekah and Steve (two very caring, knowledgeable people), I’d say sort out the array of doctors (a medical credential alone is not enough), read, read, read as much as you can, don’t be afraid to ask questions when something doesn’t feel right and expect answers when you ask. You deserve to know. Check into medicines. Twenty-five is a lot and no doctors and nurses can possibly see what you’re seeing on a daily basis, so keep detailed records of his reactions to them and then tell the docs about them. My mother has required a lot of meds adjustments over the last year. And lots of people, me included, will tell you that the lockdown is wreaking havoc on our loved ones. This is just not a normal life.

Gather people around you who love and care for your husband AND you. This site is wonderful. I also have a Zoom support group twice a month, that has been wonderful. It’s good to meet others going through what we are. No one else truly gets it.

My point (yes, I’m rambling) is that it takes constant attention, record-keeping, and you and your team approaching this from many angles. Trust yourself, your gut, your instincts.

My thoughts and prayers are with you.

Rina