New to the group (unfortunately)

1worshipguy · October 19

Hello all. Although we've been dealing with short-term memory issues for nearly 10 years, my wife of 22 years was diagnosed just over a year ago with MCI, then ALZ about 2-3 months ago. She's 53. So we fit squarely in the early onset category.

I know patience is the #1 need in a caregiver, and I'm doing my best, and trying to teach our girls the same (ages 17, 15, and 12)...but we fall short way too often. The repeated questions are easy enough to "just answer" again. Last night she tried to do something while helping to cook dinner that was a clear fire hazard...and we wound up with her leaving the kitchen crying, "I know what I'm doing!" Yet, she was back helping within 10 minutes as if there were no issues. She bought "one or two things" on TEMU the other day...12 things totaling over $200. She's had one or two odd decisions while driving...not dangerous to her or anyone else, but enough to make my girls not really want to ride with her. We're currently able to manage her schedule with the iPhone calendar...and she somehow thinks to check that first thing when she wakes up each morning, but if all the necessary details aren't there (where, what time do we leave, who's driving, who's going...), then it's a major struggle. She gets "stuck" on things...like at our 2nd Kisunla infusion, we were told we don't qualify for Lilly's financial assistance because we have insurance. She somehow heard that she wouldn't be able to take Kisunla any more...and it took a few days of answering those questions/concerns over and over before she stopped asking about it.

I know this is all part of the process and that there are stages to this thing. I know no one knows this better than this community...but I don't really have anywhere else to vent. Thank you for listening.

jfkoc · October 19

Welcome…we care!!!

Please go online and google the sites about diagnosis. Then read alz.org.

Get a copy of The 36 Hour Day.

Make notes of your questions. We will share info with you re your questions.

Victoriaredux · October 19

Hello— yes indeed you did find a place where we understand - folks here are new like you and in stage 8 but add their experience & understanding .

If you haven't seen an elder law attorney - I advise you to see one asap to get the documents you'll need to manage things into the future. Also, with three children to provide for it will be really important to check on what care options you'll have in the future since you'll be juggling college , care costs and saving for your retirement .

On finances and driving - while you may wish to delay these decisions it does seem like it is time to limit her access to money- maybe a limited cash card but no access to other accounts -and especially driving . Driving involves memory, muscle skills - dementia can involve vision. Your insurance may not cover her anymore since she's received the Dx . Really not fair to risk other people & their loved ones when your own children feel driving with her is risky. [Trust their instincts].

Lethe · October 20

welcome, you have a lot on your plate but have found the right place for support. I agree with seeking out financial information as well as applying for SSDI if you haven’t already. Also I agree with Victoriaredux to listen to your kids regarding their concerns. My almost adult kids refused to ride in the car when my DH was driving long before he was diagnosed. In retrospect I should have suspected something.

Michele P · October 20

https://alzconnected.org/discussion/77379/new-to-the-group-unfortunately

Welcome. I agree with others that if you have not done so, consult with an Elder Law attorney immediately to get legal documents in order while she can still sign. Get Hippa forms signed with all of her doctors giving you access. Apply for SSDI for your wife now. I strongly advise you to get a top- notch SSDI attorney. Your attorney can recommend one. I have been through this process. An attorney can help take the stress off. There should be no payment upfront. Contact your local Council for the Aging and ask what services are available including adult daycare. Call local in home care agencies and get information. At some point, your wife will not be able to be left alone. From what you described, she might already be at that point. Get a plan b in place in the event you can no longer care for your wife at home. This involves touring assisted living/ memory care facilities and placing her on a waitlist with a refundable deposit. Your wife should not be driving. Your children know this. They no longer feel safe in a car with her. If she gets into an accident, the insurance company might not cover it leaving you open to getting sued for everything you own. Buy TILE gps trackers and place on phones, wallet, keys, purse. Cut off her current access to credit cards and computers. You can no longer trust her with money. Limit a credit card amount if you want to still give her some access to a payment method. If she is using a computer, get parental controls on it and watch where she is going and what she is doing. She is a prime target for hackers and scammers. Others on this site had family members run up over 100,000 in debt. The problem is real. Get a geriatric psychiatrist on your wife’s care team in the event medication needs to be prescribed. They are the best equipped to handle this. Come back here for support and advice.

Michele P · October 20

https://alzconnected.org/discussion/77379/new-to-the-group-unfortunately

I wanted to share another idea with you concerning your girls. Could someone help your wife make a video on her phone or a video camera that would be given to each of your girls from their mother? Could someone help her write a letter to each of your daughters that they would be given when your wife is at stage 8? I took videos and pictures of my husband with his mother when we visited her in memory care. These videos and pictures are like a million dollar gift to my husband. Your daughters are going to want pictures and videos of their mother. ♥️

H1235 · October 20

I’m just going to add some links that I wish I had seen earlier in this journey. The more you can learn about it the better. I hope something here is helpful.

DBAT.pdf

understanding-the-dementia-experience.pdf

Anosognosia and Dementia - AgingCare.com.pdf

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

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/

https://www.medicalnewstoday.com/articles/confabulation-dementia

dcare45 · October 20

I don't have additional advice to the good advice you have already received here. I just wanted to tell you my heart goes out to you and your young daughters. For this to hit you all at such young ages has to be very difficult to say the least, You must be a strong bunch. Glad you found the site, you are not alone.

jgreen · October 21

Dear @1worshipguy

So glad you found us. We understand you don’t want to be here - we don’t either! But here we are.

You have gotten terrific advice from others already. I wanted to add one more idea - and that is family medical leave (FMLA). It is work related benefit for you to protect your job while you take some time to get things in order. When you talk with your attorney for the other important things others recommended, please ask them about FMLA as well. I remember some of my colleagues at previous work sites who took advantage of this benefit when they had to take care of family members who were sick.

Oops! I remembered another idea - your employer should also offer an employee assistance program that includes mental health counseling. Many on this site, including me, found that in the middle and later stages of this disease we needed a professional to talk with. Unfortunately this awful disease takes a toll on caregivers as well as the PWD. Don’t let the stress build up so that it affects your physical and mental health.

There is no shame in asking for help! So please do come back and let us know how you and your family are doing. We care!

SDianeL · October 23

She’s now like a toddler so baby proof the house and supervise her in the kitchen. Cabinet locks, remove knobs or get locks for the stove, locks on all external doors, etc. Stop her driving. It’s about more than memory loss. Executive function, response time, visuospatial difficulties with speed and distance. With a diagnosis you could be sued if she’s in an accident even if it wasn’t her fault. I told my DH the doctor said no driving. He gave me the keys the next day. Take away the keys or disable the car if you must. We know how difficult these things are but they must be done to protect her. Trying to reason with her won’t work.

New to the group (unfortunately)

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