New 43yo DH with possible EOAD

Anam

Hello,
My husband and I have been married for 24 years. In March I noticed a change in personality and impaired judgment. After months of trying to convince him to seek medical attention we had our first appointment in August. He was able to convince the doctor that he was ok but since the doctor has seen us all our married life he decided to listen to me. We got referred to a Neurologist who conducted a verbal test in office. We were told that hubby had memory loss. Next step MRI. MRI showed brain shrinkage. Next step lower lumbar puncture on Sept 18th. Follow up scheduled for Nov 22nd. His mental capacity is declining so fast. The waiting game is torture. No diagnosis and hubby on short term disability from work. I struggle with patience, frustration and stress. All our married life he has taken complete care of me. From bill paying to driving me. I have taken over those roles and many others. I'm definitely struggling. I started see a therapist and she suggested a support group. So here I am. Guidance, tips, words of wisdom and encouragement are very much appreciated.

Jeanne C.

I'm sorry you and your husband are going through this. It's a lot to deal with, especially at the beginning. Definitely read posts to learn - do some research on dementia - knowledge is power. Ask questions because the people on this forum are amazing. They have helped me so much. Get your legal documents in order now, rather than waiting until he's unable to sign (see a certified elder law attorney). This is also a good place to share and even vent. We've all been there.

Anam

https://alzconnected.org/discussion/comment/184879#Comment_184879

Thank you. I just got all our paperwork in order. I am going through and reading to get a sense of where we are and what is coming. <3

M1

Welcome. He is so young -you both are-and i am so sorry. He may be a good candidate for some of the newer medications-definitely ask the neurologist about that in November.

Ed1937

Anam, welcome to the forum that nobody wants to need. I'm sorry you have a need for it. One very important thing for you to remember is that if you get a diagnosis of dementia, you need to apply for social security disability, since he is so young. It typically does not take long for an application to be approved.

Here is an ongoing thread that you might want to read. https://alzconnected.org/discussion/66655/looking-for-a-bit-of-help#latest

Watson1

Now that i found the note i wrote 2 minutes ago and lost i will continue.I also have early alzheimers knowing medically what is going on is a help.I am on donespezil that may help with some aspects of the alzheimers.The frustration in finding words, keeping track of what was routine,knowing everyday will be unpredictable is taxing at best. My wife fortunately has always done the finances while we split most of the other house hol goings on.She does 98% of the driving a brief in town jaunt for me is still questionably ok.She has been in some care situations before so i think this helps.I have emence respect for what she does knowing how hard the future road will be. We met at 16 and have been married for 42 years i am very very lucky.The love book certainly left out some chapters, some needed rewrites and the constant adaption that's the human story. I hope patience and strength finds you and the next chapters will be filled with others helping you.

Anam

https://alzconnected.org/discussion/comment/184916#Comment_184916

Thank you. Your insight is very helpful.

Anam

Update: The spinal tap results do not show Alzheimer's. The doctor believes that it may be too early to show. He is putting my husband on Namenda and getting into neurotherapy.

Chammer

Since your DH is so young, you may want to talk to neurologist about FTD. You may want to review the information at theaftd.org and there are lots of YouTube videos w information. It frequently begins w more personality and executive functioning changes and less memory loss. From your introduction those seem to be your triggering factors for seeking a diagnosis. Certain meds for Alzheimers are not helpful w FTD (and Lewy Body dementia) so it is important to get a more definitive diagnosis.

Anam

https://alzconnected.org/discussion/comment/185325#Comment_185325

Thank you. I will look into this further.

toolbeltexpert

Anam welcome. I can't add to what the others have written. You sound like you've done some of your home work and it also sounds like you have a good medical team shaping up, that's going to be very helpful.

I feel like I should mention this, why?

One thing that can be very helpful as things progress is knowing your dh's older stories. Childhood memories can be very useful when he might need to be redirected when things get hard to handle.

I have those stories written down and they are in my dw's file at the mc. When I remember a new one and it's successful I share it with the cna's.

Keep reading and post we all learn together.

Stewart

Anam

https://alzconnected.org/discussion/comment/185482#Comment_185482

Thank you for the warm welcome.

Anam

Chammer thank you for the information. FTD is definitely a match to what I am seeing in my DH. I will make sure to bring this up at the next appointment. The site you directed me to also has a checklist that is perfect for me to present to the doctor.

Denise1847

Hi Anam, I am so sorry you need to be on this forum but welcome to a wonderful group. I would just add to read "the 36 Hour Day" and check out Tepa Snow on YouTube.

SDianeL

welcome Anam, this is the place for info & support. So sorry you are going through this. We know how you feel. What Denise1847 said about the book "The 36 Hour Day" it helped me so much. Keep a list of your DH's behaviors and take the list with you to all the appointments. They aren't with him enough to understand what Stage he's in. They changed my DH's diagnosis based on my list of his behavior from Dementia-Probably Vascular to Alzheimer's-Posterior Cortical Atrophy which affects his vision. Once I found that out, I researched things to do to help him. Also here's a handout that someone else posted that helped me understand what was happening. https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

CStrope

Anam, I agree, especially with his young age, check into whether there may be a diagnosis of FTD lying ahead. My husband was diagnosed with EOAD, but after various testing, that diagnosis was changed to FTD. His was primarily on his left side, so we've had to deal with a lot of language issues (aphasia). If they noticed the shrinkage in the right side, there would be other symptoms more noticeable. Also look up some of the interviews and information Bruce Willis's wife has been putting out. Her information and words have been very insightful. Good luck

Anam

Thank you everyone. Y'all have been most helpful. <3

Anam

Another update. I was able to message the doctor about the possibility of DH having frontotemporal dementia and he is scheduling us for a PET scan. Thank you everyone.

Anam

Another update. The PET scan confirmed FTD

M1

I am glad you got the results but still so sorry to hear it. Hope this forum helps you cope.

CStrope

Your diagnosis breaks my heart for you. Please read and join the comments those of us with an FTD spouse/family member have been sharing on the thread labeled "Calling all FTD Caregivers". Sometimes the differences between FTD and ALZ can be a whole different beast. I hope we're able to help you navigate this journey in some way.

Ed1937

Anam, I'm so sorry for the diagnosis. Just remember we are here for you.

Anam

Thank you everyone. I took some time to process the diagnosis and the death of my pet. What a tough year it has been. I'm thankful for the FTD thread.

midge333

I am sorry for you and your husband.