My wife will get her official diagnosis of Alzheimer's moderate and I am terrified

I was in the same boat as you last August. My wife also failed the MOCA test very badly and then was scheduled for an MRI. After 4 MRI's a PET scan revealed the ugly truth…frontal temporal degeneration and Alzheimers disease. Her Neurologist pulled no punches with the news…he told her and me at the follow up visit the results. At that point my wife in her condition didn't really understand and as of today and her progression of the disease she still doesn't. My wife was also told by her PCP and Neurologist she could no longer drive. You may want to take her cars keys as I did to make sure she doesn't drive. The great people here can help a lot so visit often…. great place to get some good advice and suggestions, or to just vent going forward.

Best of luck

@DanilnMaine you have found a wonderful place here to come with questions, comments, or just to find some solace and empathy. Be sure to return often, when you feel the need. Having some knowledge of what happens along the road following a dementia diagnosis is very helpful in somewhat alleviating the anxiety and tension you are most likely feeling.

Also I would suggest reading up on dementia. The "36 Hour Day" is highly recommended by a lot of folks here. It will help you navigate this journey you are now on, so you don't feel like you are floundering around. There are also many videos on YouTube, particularly helpful are those from Teepa Snow and Tam Cummings.

Finding an Elder Law attorney is definitely a great idea and you should probably go alone, as it may confuse your DO.

Every time that we see the neurologist, the doctor asks DH how he thinks things are going ( Great. I'm doing fine), then he turns to me and I asks me how I think DH is doing and what I have observed. I hate it that I have to say all that in front of my DH, but the doctor seems to think that this is necessary. DH is sometimes shocked by all that I say. and make a comment like, "I didn't know that I was that bad off" and such. I think, that in the earlier stages of ALZ , and perhaps other forms of dementia, that a wake up call may help to break through the patient's denial. Just a guess that is why the doctor asks me in front of hubby. DH has made comments like "

Welcome. I am so sorry you are here with this diagnosis. I will share with you what we were told to do immediately: Get a notebook and write down information about everything I am listing below as you meet with people and make calls to get information. This should include behaviors and symptoms you see with your wife to share with her doctors by handing them a note or a private message on the online portal. If you have not consulted an Elder Law attorney, do so immediately to get legal affairs in order while your wife can still sign documents. Get Hippa forms signed giving you full access. You will have to take over all finances. Do not trust that she has paid bills or paid them correctly. Get a list of all accounts in her name including credit cards and bank accounts along with log in and passwords. Do the same for computer and phone. Get a plan b in place in the event you can no longer care for your wife. This would involve touring assisted living/ memory care facilities and putting her on a waitlist with a refundable deposit. Get TILE gps trackers and put them on phone, wallet, keys, purse. Buy the book The 36 Hour Day. Excellent resource to help you plan for what is coming. Call local in home care givers and get quotes. Call your local Council For the Aging and ask what services are available including adult day care. Make sure that a geriatric psychiatrist is on your wife’s care team. If there is a Mayo Clinic near you, get a referral for The Habit Program. Top- notch program to help patients and care givers. They will train both of you in Brain HQ, an online cognitive brain game program. It has helped my husband build new neurons in the undamaged part of his brain. Ask about infusion drugs to slow the progression. Travel and get a lifetime of memories in now while she can still travel. Tell family about the diagnosis now. Find a local support group and a therapist for yourself. This disease will bring you to your knees and break you in two. Lastly, never argue points with your wife. Her brain is broken and her reality will never be the same as yours again. Apologize for what you never did. Just keep the peace as much as possible and keep both of you safe. Come back here for help and support.

I am also concerned about telling the neurologist "all the bad stuff" in front of my DW, so before every appointment I write a one page summary of how things are really going, note any changes in medications and behaviors, and list all the questions I'd like to discuss. At the start of the appointment, I saw I have some background information and give them my list, so my DW isn't embarrassed or concerned. This helps them understand the real situation and helps not forget any topics I'd like to discuss. At the end, I ask them to keep it shred it, so I'm not worried if my DW finds it and gets concerned. Maybe this idea will help others…

I’m in Maine also. My DH is Stage 4. You may find that in a rural state like ours, neurologists are few and far between and the wait times to get an appointment are long. I have found that my DH’s experienced primary care physician is very helpful; he has seen a lot of Alzheimer’s, unlike our new neurologist, who’s maybe 35. We see the PCP twice a year and I can message him easily through the portal at any time. Before a visit, I upload to the portal a little summary of how things are going so I don’t have to discuss decline in front of my DH, who doesn’t think he is declining at all. Also, we have had a year now, a kind of plateau, on donepezil (Aricept), which has been a big help, although the effects are now waning and the doctor just added memantine. Others may tell you they do not see a difference on that drug, but I did. The other thing that is useful is an established routine. My DH works out with a trainer, plays cards at the senior center, and takes part in the Rock Steady Boxing program (because he also has Parkinsonism). I drive the car a lot to his various activities, but the unvarying routine (on a big white board by the door) really helps. Now that it is summer we can be outside (we have big gardens) but the 35 and 65 piece Springbok dementia puzzles really helped pass the time this winter. Since we’re in the car a lot we listen to audio books—better than an actual book for him because we are listening together and I can help him if he forgets a character or gets confused. Hope this helps.

S

Our Neurologist always wants the person with dementia at the appointment and wont meet with me separately. Partially insurance related and partially because she genuinely wants to see how DW is getting along.

When we were seeing our neurologist, he always made a point of having the nurse take DW out of the exam room for a few minutes to check her gait. He would use this time to allow me to speak freely. He had signals with the nurse to keep DW busy longer if needed more time to talk with him.