New to the group

Jobrien12 · July 18

I have just joined the group and Im not quite sure how it works. My husband (age 65) has early onset alzheimers. We have been struggling with issues for years, had numerous tests, no doctor has been willing to give an official diagnosis. He recently took the PTAU217 test and his numbers were completely off the chart. A normal range is .0.18, he tested 1.78, the test result had an alert notification on it as abnormally out of range. In googling this it is pretty clear he has alzheimers and is probably in advanced stages (which I already know based on our day to day), but I am still waiting for a doctor to give me a diagnosis. We recently moved from Wisconsin to Littleton CO. I am looking for local groups to potentially connect with in an attempt to get help/support/answers. I am also trying to find him a doctor here. Do I just get a PCP, or a neurologist? Not sure, anyone have recommendations? Finally I work full time, (used to be able to work remotely, but am in office full time now). We filed for disability over a year ago, it was denied and we are in the appeal process. He is ok at the moment being home during the day alone, but Im not sure how long that will last. I also would love to get him involved in something during the day while Im at work to give him something to do with his time. So, I guess I am reaching out for any information others have that can assist me in the process. Thank you in advance.

Timmyd · July 18

Hello and welcome. You have found the right place.

Here are my opinions on some of your questions.

The amount of additional testing used to confirm the diagnosis is a personal decision. Has he had neuropsychological testing? That testing is what confirmed my DW had dementia. At that point more invasive testing was needed to identify the cause of the dementia. We were given a list of possible causes and statistical chances for each based upon the results of neuropsychological testing. Given my DW age at the time (mid 50's) we were encouraged to get a PET scan which we did. It confirmed ALZ. We were told my DW diagnosis of ALZ had a greater than 90% accuracy given the results of all the testing. My understanding is that once all the reversible causes of dementia have been ruled out, you are left with a handful of irreversible causes. Further invasive testing to get greater confidence in the specific cause of the dementia is something you should discuss with physician.

We filed for disability in Texas and it was a nightmare. Eventually, after about 18 months of nonsensical back and forth, DW was denied for reasons which had no basis in fact. We then retained an SSDI attorney and have reapplied. Things have gone much better and we expect the application to soon get approved. The attorney fees are taken out of the back pay provided received upon successful claim.

I would use a neurologist at least to the point where you are satisfied with the diagnosis and no longer interested in further testing. After that, it is a personal decision whether to continue with neurologist, use a PCP exclusively, or a mix of both.

I would take the time to be informed of what lies ahead so that you can reasonably prepare, but otherwise do not dwell on it. Focus on making each day the best day possible. Following my DW diagnosis, we were both more kind and patient with each other as we understood what we had been dealing with are not behavioral choices but rather symptoms of a degenerative neurological disease.

jen ht · July 18

Hello and welcome. You've found a great place here for support.

The Alzheimer's Association 24/7 Helpline at 800.272.3900 is an amazing resource. I encourage you to call. They can provide information for your area too.

Others will respond with more insights. I wanted to be sure you knew about the phone number too.

Take care,

jht

Goodlife2025 · July 20

Hi and welcome from a fellow Colorado caregiver. We live in Grand Junction so not too close to know of local groups to Littleton. My DW age 49 is in stage 5. While our exact circumstances are each unique; you have come to a great place for support and practical answers. SSDI was verily easy to get approved but there is a 6 months wait after you apply so the sooner the better. @ Timmyd gave great advice above. One day at a time.

SDianeL · July 20

Welcome. I would get a PCP and a Neurologist until you get a diagnosis. Make a list of his behaviors and take them to the Neurologist. Don’t show the list to your husband. Tell the neurologist you are applying for disability and need a letter confirming cognitive decline. Most counties have Agencies on Aging and some have day care for seniors with cognitive issues. Check with memory care facilities to see if they have support groups. Some are open to the public. Also as others suggested call the Alzheimer’s toll free number listed on this site. Come here often for info and support. You can ask any questions here or just come to vent. We understand what you’re going through.

New to the group

Comments

Commonly Used Abbreviations

Community Guidelines

Categories