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I think the first things you need to do are:
1. Sit down with an Elder Care Attorney and make sure all your wishes are in writing. Make sure that YOU are protected if something happens to you or your husband. Make sure your husband is protected if something happens to you or him.
2. If you are living in a home seriously think about moving to, at this point Independent Living facility so you do not have to worry about many aspects of owning a home. But the facility should also have Assisted Living, Memory Care AND Skilled Nursing. You may never need all aspects but planning ahead is always good.
3. Make sure you wishes are known as to what medical procedures you want done when it comes to choices like CPR, Tube feeding, Intubation.

Find a Support Group.
contact the Alzheimer's Association they have many programs that could help you.
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bjdegidio Mar 26, 2024
Thank you! Your suggestions are great - I'll start with the Alzheimer's Association immediately. I never thought of them.
The Independent Living facility is too expensive. Because we are in our seventies we would run out of money too soon. We have Durable wills and Powers of Attorneys. Do we need more?
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Have your doctor refer you to a social worker who can help you with elder services . My Mother on Cape Cod got a grocery shopper , House cleaner . My Dad was able to get a CNA ( Certified Nurse assistant ) for bathing and Light house Keeping . Meals on Wheels can deliver . Your Doctor can send in a VNA Nurse to check on the Both of you and help you with medications . The Doctor can also send in a physical therapist a couple times a week . Contact your senior center there maybe activities . Also Look into rides for appointments - elder services can help you with that . ( You dont want to be driving ) Sorry you are going through this - Alzheimers association has great support groups and activities for people with Dementia . Wishing you the best .
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bj:

Have you been diagnosed by a doctor?
What type of dementia do you have and for how long?
What discussion have you had with your doctor about this?
What currently is your support from medical community?
From family?

Have you any experience at all with dementia?
Have you done any research online.

I would love to know a bit more about what sort of support you are seeking.
Best out to you.
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While helping my mother, I spent a great deal of time searching for information. She destroyed many important documents.

Once you do have all the critical documents (POA, will, directions, deed, insurance) organized, consider consolidating bank accounts, etc, if you have money scattered about. (my mother had multiple small accounts at every bank in her city) Keep copies for yourselves, and give copies to your POA and trusted others. Consider creating a binder or box about your bills, major receipts and repairs, businesses you use, etc, to make it easier for someone to step in to help you.
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Hello bjdegidio , There are somethings You Can Try : Lions Mane Mushroom for the brain - comes in a Tincture form , Gummie form or you can grow them . Acupuncture , Shiatsu massage , Mediterranean diet , Macrobiotic diet , Eating Brain foods such as Fish , walnuts , Blueberries , avocados , seaweed , Growing your Own organic food . Exercise . Ionic Foot bath to remove the toxins from your Lymph system . You Can study Reiki , Qi Gong . Swimming in The ocean if Possible and making sure you get your head underwater to absorb minerals for the brain. Stay away from processed foods , white sugar , Meat and Pharmaceuticals . Make sure to get into nature and walk Barefoot on the grass . You could try Yoga to get better blood flow to the brain. Just some ideas for you .Learning Meditation can be helpful also to Limit the stress -
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Anxietynacy Mar 28, 2024
Good advice for everyone, knance!
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I was diagnosed by my doctor in 2022. It isn't Alzheimer's Disease. I am progressing quickly since having RSV in January. My husband is having similar issues so I am concerned for him trying to care for me. My Mom died with it and the experience was traumatic. There is no other family. I would like suggestions on maintaining independence to keep the load off others for as long as possible.
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AlvaDeer Mar 21, 2024
What exactly does this "load" you describe consist of?
What care do you currently require?
What is your diagnosis?
Who is currently caring for you and your husband?
Are there children? Other family? Friends? Faith-based community?
Are you living alone together and able to cook, shop, clean, get to doctors?

It is very unclear to me still what kind of care you need at present.
If you and your husband BOTH have diagnoses of dementia it is time to get yourselves into long term care in facility, whether nursing home, independent living or ALF.
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Since you are aware of this, now is the time to make sure finances and all of your wishes concerning care, such advanced directives, are made clear. Who are the "others" if you have no family besides your husband? Who would be POA? Would you think about moving both of you into assisted living soon? Independence may not be possible, especially if the dementia is progressing quickly. It would be good to get yourself in a safe environment so that worries are minimized.
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bjdegidio Mar 28, 2024
Thank you. The "others" would be strangers from whatever services we would need. Haven't figured out a POA.
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What is ALF please? We handle living alone together and able to cook, shop, and get to doctors by us both working together. He hasn't been diagnosed but we both see the same issue in him that I have. Cleaning is a catch as catch can proposition.

Our doctor diagnosed me and left it at that. We have no other family. Our church is made up of people older than us; they need help themselves.

I've read everything I could find but still don't feel I have a grasp of what action should trigger which corrective response.
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lealonnie1 Mar 26, 2024
ALF=Assisted Living Facility
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Have you both given up driving ?
Uber to the doctors .

Would you be able to order and have food delivered or your POA help with that ? You can also order from Wal mart , Amazon , just about anything else you need .

Does your POA know that your husband is now having symptoms as well as you ?
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Music is One of the best things for the brain and word Puzzles .
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