I need some help and don’t know what to do.

My grandma lives with her partner and has early dementia.

Her son lives across the country and isn’t really being very helpful in this situation.

Her memory is poor.

She will have a conversation, forget it and then have the same one again.
You often have to repeat stories over and over.

She spends a lot of time on the computer alone.

Her hygiene isn’t as good as it used to be... she used to take care of herself very well.

She's started to be very mean to her or we and will often snap at him, swear and tell him to leave.

The real problem is... what do we as her family do?

She has been very independent for all of her life and very stubborn.

When she talks to you... she has her wits about her and she doesn’t think her issues are that bad.

As her family... we don’t know at what point do we step in and make decisions for her?

ie. should we move her in with family?
should we put her into a home?
We’ve talked to her about it once before about a year ago and she said she wanted to live in her home until she couldn’t anymore.

Her spouse is becoming unhappy and we don’t know much about dementia or how to help.

- are there good resources?
- what kind of doctor should she be seeing?
- how can we get support for her spouse?
- what if she refuses to move in with family or accept her situation?
- how do we talk to her about important things if we think she won’t remember them? It feels pointless to even talk to her about them.
- is it better to leave her at home or step in and force move her out? What if she doesn’t agree to have anyone come help her at home?

Feeling really lost about all of this and don’t know what to do.

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Lanocty, welcome to the world of dementia and know that it will likely be a very long road. Sjplegacy offered some excellent suggestions and I second the recommendation for "The 36-Hour Day" book, which quickly became my go-to bible, both for preparing me for what would come later and for referencing every day a new problem arose. Also valuable was participation in local Alzheimer's support groups, which provided me with first-hand knowledge of how other caregivers solved problems as well as solace from their ability to understand what my wife and I were going through in providing my dad's care during his last stages. Best wishes.
Helpful Answer (1)

The first and most important thing, while she is still considered competent is to encourage her to get her legal documents in order. Powers of attorney, DNR, last wishes, etc.

You cannot make her move anywhere unless she has been declared incompetent by two doctors. She should see her primary care doc. Is that doc a geriatric specialist? If not it is time to find one for her.
Helpful Answer (2)

Her symptoms certainly seem to indicate dementia. The first thing is to have her evaluated by her primary care physician. He/she will run some very basic cognitive tests, ask her some questions, get her medical history, and ask the family about her behavior and their concerns. If dementia is suspected, your g'ma will be referred to a neurologist who can more definitively determine if she has dementia and what's causing it.

Understand that dementia refers to symptoms, it in itself is not a disease. A neurologist (or gerontologist if you can find one) will conduct further tests to determine the cause of the symptoms. Think of a headache. It is not a disease but a symptom of an underlying cause. It could be a bad cold, a brain tumor or even stress. The dr. needs to find the cause. Same with dementia. Dementia has many, many causes.

Assuming she has dementia, the family needs to become educated about it. There are many resources to help you. Two of the best books are “The 36 hour Day” and “Learning to Speak Alzheimer's”. YouTube videos of Teepa Snow and Dementia Careblazers are excellent. Googling the word “dementia” will result in many different medical and organizational websites. Call your local Area Agency on Aging to get some suggestions about other resources like home care and available programs that may help.

You're at the beginning of a long and challenging journey. The more you prepare for the future and understand the possibilities, the better you'll be able to help your g'ma and yourselves. There is so much to consider. Find an elder care atty in your area to discuss the legal aspects of her diagnosis.

This is just the tip of the iceberg. Others will offer many more suggestions and advice. As you continue this journey, stay in touch with this forum to get valuable information.

Good luck.
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