What Do I Need to Learn?

greenolive · October 30

Hello all,

Thank you for your collective wisdom. I've been reading posts and learning.

My DH was diagnosed with ALZ a month ago. We're early in the process with MCI right now. He works, drives, cooks, etc. (but is slowing down cognitively and short term memory is poor).

I'm taking some time off of work to get some things done. I have time to take a class or two. What should I study now to help me as things progress? Medical Assistant? Psychology? Social work? something else? What can I do to help prepare myself for the future?

I worked as a hospital chaplain and have a degree in pastoral counseling already, which has been helpful thus far.

Thanks in advance for any advice. 💜

HollyBerry · October 30

Patience. Grace, for yourself and others. Boundaries. The ability to ask for help before you need it. Hobbies that get you away from the house and other hobbies you can do at home. A sense of humor. A support system. The ability to create routines and habits, and patience when your LO wants different routines and habits. Financial planning. The ability to keep your mouth shut when you don't want to.

You original question sounded like you were inquiring about areas of study, and I'm finding that in my case, my experience with kids with disabilities and child development in general has been really useful in understanding how skills develop (and unravel), and how to have fair expectations. I like browsing occupational therapy resources, too. Or just let go of all of that and live your life as best you can.

Quilting brings calm · October 30

I don’t think there is a college course to take for this. It’s more a matter of gathering resources and joining groups like this one to get support and take advantage of collective wisdom. If you can find the Groups tab, there’s a ‘group’ for new people that gives the type of resources and info we felt would be helpful to those just starting out.

Get your legal and financial stuff in order: wills, Medical power of attorney, legal and financial POA. You should be his power of attorney - but you should name someone else to be yours.

Joe C. · October 30

If your husband is in the early stages my advice is to do now things you talked about doing in retirement. I retired early, once I realized my wife was congenitally impaired and we had several good years traveling and doing the things we had planned on in retirement. I am so grateful that I made this decision. Forget about taking courses and enjoy the time you can spend together while he is still high functioning because this is the only time you will have as a couple. This site will provide the best education you need to survive this journey. Good luck.

Stan2 · October 30

"Quilting brings calm" offers great advice. After you have learned all there is to know about this condition be prepared for "only some of it" or "none of it" to apply to your situation. While we all share some problems we all have unique situations. Patience and flexibility are your friends. My DW woke up this morning and asked if we could go for a drive. It is the first time in quite a while she has shown and interest in anything without my suggestion. We will go on a drive today. The chores will still be here tomorrow. Maybe she will smile for me today.

jfkoc · October 30

Validation…google Naomi Feil.

Iris L. · October 30

Read as many threads on this board as you can. Then you will have had a good education on dementia and caregiving.

Iris

Whatdowedonext · October 30

https://alzconnected.org/discussion/71057/what-do-i-need-to-learn

Do everything you can to slow the progression of the disease. Then emphasize the happiness of living, be grateful for each wonderful moment, do everything you are capable of now, travel, enjoy friends and family. This will go on for years and years, squeeze as much happiness as possible!

annie51 · October 31

I agree with many here to say do what makes you happy and enjoy this time while you can. Before my DH lost his license, we had a trip planned to the mighty 5 National Parks in Utah which of course involves a lot of driving. We wouldn’t have done this trip if I was the only driver. But it was a great trip and even though DH doesn’t remember most of it now, he does have a couple of memories that stayed put. We were also able to do some ski trips and family visits up until this year when I pretty much put a halt to our travel days.

This forum is a lifeline to your sanity! Such great and caring people willing to share or just listen.

greenolive · October 31

https://alzconnected.org/discussion/comment/226973#Comment_226973

Thank you. My brother-in-law (DH's sister also has ALZ) suggested I watch Deepa Snow videos on YouTube. I haven't done so yet, but I'll add Naomi to my list!

playing · November 1

I have learned so much from many of you, just knowing that I’m not the only one experiencing many of these difficulties is such a blessing. Thanks to everyone for sharing your experience.

SDianeL · November 1

Welcome and sorry about the diagnosis. 2 things that helped me after my diagnosis. The book “The 36 Hour Day” which was recommended by a nurse. And Tam Cummings videos. I don’t think there is anything that will prepare you to be a caregiver to someone with Alzheimer’s. It’s mentally & physically exhausting and when a new behavior pops up it’s a gut punch. I kept a list of my husband’s behaviors and sent them to his PCP & Neurologist and later his Geriatric Psychiatrist at least monthly. It helped me communicate with them without discussing it in front of my husband. As others have said, do things now. Don’t wait. Enjoy every moment. Come here for info and support.

Grandot · November 2

The book Did I Remember to Tell You has very practical helps and information.

Iris L. · November 2

Grandot, can you post your book recommendation on the "Books About Alzheimer's" thread on the General Caregivers board, so more members can learn about it?

Iris

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