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Kellybelle · September 13

My husband, my best friend, was just diagnosed with AD. He is 65. He's had a amyloid/tau protein blood test, MRI, PET scan, neuropsych testing and it was determined that was the diagnosis. The neurologist was very scientific about what AD is but wouldn't tell us anything about progression or what to expect or what stage he may be in. I don't know where to turn to get information. He has lots of trouble with word recall/conversation/focus/losing things/following tasks, etc. Some of this has been for several years, but we thought it was aging. I don't know where we are or what to expect. Suggestions for information? Thank you all and God bless you for the battles you fight for your loved ones.

Timmyd · September 13

I can maybe help with what stage he may be in. When DW had neuropsych testing, as part of the results were an indication of current stage on the GDS scale. It may be worth trying to look at the results of the neuropsych testing to get more information as to what those test results indicate. In our case, when we read the test results, they included an estimation of current stage on the GDS dementia scale:

https://www.dementiaresearch.org.au/wp-content/uploads/2016/06/GDS_scale.pdf

Vitruvius · September 13

For info on stages I like the narrative format of the fisher scale:

https://alzconnected.org/home/leaving?allowTrusted=1&target=https%3A%2F%2Fwww.alzinfo.org%2Funderstand-alzheimers%2Fclinical-stages-of-alzheimers%2F

Many often recommend the table formatted DBAT from Tam Cummings:

https://alzconnected.org/home/leaving?allowTrusted=1&target=https%3A%2F%2Fstatic1.squarespace.com%2Fstatic%2F6372d16ea4e02c7ce64425b7%2Ft%2F63f7b80d80d8aa3e3aa4a47d%2F1677178894184%2FDBAT.pdf

Make sure you also have all your legal documents taken care of while your DH can still sign documents. Important are a DPOA and a HIPPA release. Other documents like wills and trusts should also be considered.

Plus everyone here is ready to answer specific questions you might have.

I should also mention that different types of dementia have different progressions My DW has Semantic Dementia which followed a different course in the early and mid stages, but was pretty much the same at mid Stage 6 and beyond.

H1235 · September 13

Welcome. You have been given excellent advice. In addition to legal documents for your husband don’t forget about legal documents for yourself. Your husband will no longer be able manage if something happens to you first. He will also not be able to care for you if you develop dementia. I have attended a good article about dementia that may be helpful. Remember that ever person with dementia is a bit different, so it can be very hard to know what to expect. This website is a great resource. It if full of kind caring people that have been through a lot.

understanding-the-dementia-experience 4.pdf

annie51 · September 13

Welcome to the forum. The situation we find ourselves in is very daunting and it is difficult to know where to start, but you have some good advice already. I would add that the book “36 Hour Day” is a good starting book to read. Seeing a Certified Elder Law Attorney and getting the legal documents taken care of is vital. Planning ahead for the unexpected, such as something happening to me, gave me some peace of mind so I could focus on the caregiving. This forum is fantastic for getting advice, having your feelings validated, or just venting your frustrations with no judgement.

blacksparky · September 13

Welcome Kellybell to the group. You can’t be in a better place to get the support and answers as you and your DH start your journey, as I call it, the Alzheimer’s Roller coaster. I totally agree with everyone’s comments. My DW was diagnosed with EOAD at the age of 53 about 3 years ago. I have relied on this group to help me navigate all my questions and concerns. One thing I did about a year ago( wish I started at the diagnoses) was to start a daily journal of everything in my DW’s life, both good and bad. I recorded her disease as it progressed. When you are with your LO day after day, you actually can’t see the progression. Looking back at my journal helps me to see where we are at. This also helped me to estimate what stages she might be in. If you have concerns or questions, you’ve come to the right place. ❤️

SDianeL · September 13

welcome. So sorry about your husband’s diagnosis. I found that doctors were not much help. I found more help and support here. Learn all you can about the disease and caregiving. It will help you help him. Ditto on the book “The 36 Hour Day” as a good starting point. Then search online for dementia caregiving videos. Tam Cummings and Teepa Snow have good ones. Come here often for info, support or to vent. We understand. 💜

BJEndresen · September 14

I found this guide and the descriptions helpful. My DH has been at stage 5 for at least a year now.

Michele P · September 14

Welcome to our group. You have been given excellent advice. Take care of the legal and medical documents immediately. A few other suggestions: purchase TILE gps trackers to place on keys, wallets, phone etc. You can link your loved one’s items to your online account. Discuss what he wants as far as long term care, medical directives, funeral arrangements. Write down, sign and notarize these decisions. Tour assisted living/ memory care facilities now. Get him on a wait list with a refundable deposit. They will call you when a room is available. You can accept or decline. They will keep you on the list indefinitely. Look into in home care agencies. Make a list of every account and expense. Get passwords for all accounts. Get passwords for his computer and phone. You will have to take over all finances. At some point, he should no longer drive. There are places that give extensive driving tests to certify if he should be driving. If he gets in an accident with this diagnosis, he is automatically at fault. You can get sued for everything you own. Your car insurance company might not cover the accident. Get a lockbox to store an extra set of keys and anything else you don’t want misplaced. This is all overwhelming. The people here are supportive and understand what you are going through. Come back here often. Take care of yourself.

Michele P · September 14

Talk to family about who would care for your husband if something happens to you. Share with them the name of the facility where he is on a waitlist and in home care agencies.

Michele P · September 14

Give a copy of the power of attorney and medical directives to your husband’s primary care physician and any other doctors not in network with that pcp. If your husband is a veteran, give a copy of these documents to the VSO at the VA or your local VSO.

Lgb35 · September 14

Teepa Snow has some great books and videos on YouTube. She helps you understand what is happening and how to interact as things progress.

howhale · September 15

Welcome to this group. It is a wonderful group of people who have lived or are living the experience you are embarking upon. I too found the neurologist of little help in guiding me as I started with my dear wife 8 years ago. I wish I had found this forum at the beginning. It would have helped me know better what I might expect and have tips in my back pocket to try to help my wife. Be active here, ask, questions, use the search bar to research topics, this is your best resource for information that is useful and a safe place to unload when necessary. We are there with you and people here are so willing to share, console, grieve with you, and laugh with you. Yes, in time you will be able to find a chuckle in some of the most unusual experiences you will ever have. My case may be different from others but I found the doctor acted like he had done his job with a devastating diagnosis. Like being in a small boat by yourself without any help as the doctor pushes you shore out into the ocean and says good luck. This forum can give you oars, navigation, SOS responses, food and water, survival help and unconditional love. Don't be a stranger here.

PJ52 · September 15

My H was diagnosed with Mild Cognitive Impairment (MCI) due to AD two years ago. Ten years before that, after showing some unusual irritability, he was diagnosed by a neuropsychologist as having MCI. He was given a mood stabilizer (Depakote) which really helped. So we have been in the MCI stage for 12 years. He has had very slight progression, mostly with slow thought-processing/making judgements, to the point I now do 99% of the driving. As soon as I recovered from the shock of the AD diagnosis, we saw a highly recommended Elder Law Attorney. I was amazed at her depth of knowledge. Getting her advice and all our legal/financial affairs in order, while he is still able to participate, was a huge weight off my shoulders. THAT SHOULD BE YOUR FIRST STEP. Then you can focus on everything else. I highly recommend finding a therapist who specializes in seniors with chronic illness and their caretakers. Mine has been the biggest help in every way, including encouraging self-care and directing me to local resources. The best place to search for one in your area is psychology today.com. Medicare covers it. Remember that even the early stages are exhausting, at least mentally, for caregivers, so self-care is important. You’ve made a great start here by coming here. 👍 All the best to you!

PJ52 · September 15

Kellybelle · September 24

Thank you all so much!!! I don't feel so alone now, that's a blessing in itself!

SDianeL · September 25

https://alzconnected.org/discussion/comment/254457#Comment_254457

💜

WIGO23 · September 26

I did something that has also helped my peace of mind. I bought a watch with a fall detector that notifies my daughter should I become unconscious. It occurred to me at age 74 that I am not as sure footed as I used to be (I have fallen a few times in the past 3 years —once breaking my arm).
I am not sure my DH could call for help in an emergency because he can get really anxious really quickly in surprise situations!

Just one more thing in a long list of considerations!

I am sorry you have had to join us in this difficult journey. But we will walk this road with you.

Janey63 · December 12

https://alzconnected.org/discussion/comment/253494#Comment_253494

OMGosh, this is exactly what I need to help me focus on what I need to work on. My 63 yo husband was just diagnosis with Alzheimer's stage 4 and i am so overwhelmed! Thank you

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