Just starting the journey

golfer74 · May 29

My DW has dementia and I will be the primary caregiver. We have been married 52 years and I am at a loss as to what to do, how to start, what to do or not do.

SusanB-dil · May 29

Hi golfer74 - welcome to 'here', but sorry for the reason. I know that diagnosis has to hurt. ((hugs))

First thing - is to get paperwork in order. Do you have DPOA for her, and HIPPA accesses?

Do keep in mind that everybody's journey will differ as far as any timelines, but unfortunately, eventually follow the same trajectory. There is a thread here on good reading material, please do look that up, and probably the top book pick would be 'The 36-hour Day'. Definitely helpful. There are Teepa Snow videos as well for when you will inevitably come across various 'roadblocks'.

And this forum… invaluable. Stop by often. ask questions. vent. We understand!

Editing to add: In caring for DW, please make sure you take care of you. Very important

Michele P · May 31

https://alzconnected.org/discussion/76162/just-starting-the-journey

Welcome. I am sorry for your wife’s diagnosis. I am giving you the advice we were given. First, see an elder law attorney and get your legal documents in order while your wife can still sign documents. Do this immediately. Get HIPPA forms signed giving you access to her doctors and medical records. You will have to take over all finances. Get account numbers, log ins and passwords for all of her accounts, bank accounts, computer, phone. She should no longer drive . If she gets into an accident, your insurance company will not cover it. You will get sued for everything you own. Get a plan b in place now in the event you can no longer care for your wife. This will involve touring memory care facilities and placing her on a waitlist with a refundable deposit. Most facilities have a waitlist of a year or more. Call in home care agencies and get information and costs. Call your local Council on the Aging and ask what services are available including adult day care. Get TILE gps trackers and place on phone, keys, purse, wallet. It tracks the person and the items. Get the book The 36 Hour Day. It is excellent and will help you plan for what is next. If there is a Mayo Clinic near you, get a referral for The Habit Program. It is an exceptional program for patients and their caregivers. They will train both of you on the Brain HQ online games that will help with cognitive function. Do not argue with her about anything. Her brain is broken. Her reality is not yours and never will be again. Apologize for what you never did. Tell her therapeutic lies to keep her safe. I keep all of my notes and information in one notebook. Keep notes on new symptoms to share with her doctors. Do not talk about this in front of her. Give the doctor a note to read or post it on an online portal prior to the office visit. Make sure to get a geriatric psychiatrist on her care team. Many patients need medication. Do not assume what she is telling you is true. She might tell you she paid bills, took medication, fed a pet and did not. As she progresses, she will not be able to be left alone. She can turn on a stove and not turn it off or walk out of the house and wander. Your local police or sheriff’s department has Project Lifesaver that will give you a gps tracking watch that is waterproof and can’t be removed. They can track her anywhere in the U. S.
Travel now if you can. Make as many memories together as possible. Come back here often for help and support.

dancsfo · June 1

I agree with the comments written. The following are mentioned often, but some are worth repeating:

Blame the disease, and not the person. Your DW is not intentionally trying to hurt you.
You must take care of yourself. Imagine what will happen if you fall ill due to stress.
Get outside help as needed. It can be as simple as making your neighbors aware so that if your DW wanders off, they can alert you, or perhaps even bring your DW back.

H1235 · June 1

Welcome. All good advice. I will add a few resources that may be helpful.

understanding-the-dementia-experience.pdf

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

https://iona.org/therapeutic-fibs-ok/

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

jfkoc · June 1

Source for attorney:

https://www.nelf.org/

get documents for yourself at the same time

No one is born knowing how to be a caregiver. You learn.

We are always here for you to pass on what others have taught us and we care about you!!!

JPJardinel · June 11

52 years of marriage and suddenly having to learn an entirely new role is one of the hardest things a person can face and the fact that you are reaching out says a lot about how much you love her. The most important thing to know right now is that you do not have to figure everything out at once, start with one day at a time and build a simple routine around meals, rest, and calm activities since consistency and familiarity genuinely help reduce confusion and anxiety for someone with dementia. It also helps to remember that some of the difficult behaviors you may encounter are driven by the illness and not by her, which can make it easier to respond with patience on the hard days.

I got my references here:

https://hopebridge.care/yakima-family-caregiving-challenges-and-finding-daily-balance/

https://en.wikipedia.org/wiki/Family_caregivers

https://www.adventhealth.com/blogs/how-become-a-caregiver-a-family-member