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Welcome to the “club nobody ever wanted to join”. Stay here for some great advice from so many awesome caregivers tell their stories. I would not have been able to deal with all this without everyone’s help and encouragement.
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Welcome. You'll get great advice if you ask for it, never any judgement and a lot of experience. Good way to put it Blacksparky, I certainly didn't want to join. But I'm glad I did, friends that understand, it's great.
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Hey Mary, sorry you’re here but welcome. Go get the book the 36 hour day. Start thinking about legal stuff like powers of attorney. Start taking over all the finances. Go travel now if you like traveling and have the means. Take pictures and videos now of your loved one if you don’t have many. Especially videos having a good time. And keep us updated.2 -
Welcome. As others have stated, your number one priority now is getting a consultation with an elder law attorney to get your legal documents in order while your husband can still sign documents. Get HIPPA forms signed with all doctors to give you access. You will need to take over all finances. Get account information along with log in and passwords for these accounts. Put every bill on automatic payment. Do the same for all bank and brokerage accounts, phone, computer. Set up text messages or email notifications with all credit cards and financial institutions that notify you if any money is charged, payment is made or money is going out of these accounts He is a prime target now for hackers and scammers. With this diagnosis, your car insurance company might not cover an accident leaving you open to getting sued for everything you own. Alzheimer’s impacts driving. Call the insurance company. Buy TILE gps trackers and place on phone, wallet, keys. It tracks the items and person. Keep a notebook with notes of new symptoms and behaviors to share through the portal or a private note with his doctors. Do not state in front of him. His brain is broken, and he might not ever accept his diagnosis. I would include all notes from doctor visits and other information you obtain through contacting care providers in this notebook. Contact your local Council on Aging and ask what services are available including adult day care. Call in home care agencies and get information. Get a plan b in place in the event you can no longer care for him which involves touring assisted living/ memory care facilities and putting him on a waitlist with a refundable deposit. Buy the book The 36 Hour Day. It will help you understand the disease how to prepare for what is coming. Travel now and live your bucket list now. This time is precious. Come back for support and advice.
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Yikes! I am in the same boat as the original poster, Mary. My DH is 78 y.o and recently had his initial 4 hr. consult with neuropsychologist and a battery of testing. That consult ended with info that he had multiple areas of impairment suggesting a likelihood of Alzheimer’s, and an invitation to consult with the rest of the team. He is on a wait list for that next consult, and he, too, is largely in denial about any impairment. Fortunately, he no longer drives, for other reasons. The above to-do list made me want to go screaming into the woods! I am 75 and in good health, and have already taken steps in the process of getting the necessary legal documents squared away, but the rest of the long list scared the heck out of me! We have an adult son who is more than willing to step up, but lives two hours away from us with his family. So much to be done, and I understand procrastination is not an option. Any tips on order of importance and urgency would be appreciated.
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Hello @ShorkieSC welcome, I'm glad you found us.
@Michele P has given great advice. The only thing I would add is other than the elder law attorney I would pace myself a bit trying to accomplish everything. All of this can be over whelming. I would certainly take the suggestions and act on them just not all at the same time. It's a very long journey and for me some of the hardest parts where at the beginning. It is a hard diagnosis to accept or get your head around especially if you're the PWD. Yes, it was a very difficult time for DW and I to BOTH except our new reality. She would lash out in her frustration and I in mine. Try not to take the mood swings personally, which is almost impossible until you get used to it, but you will. Remember to breathe when you can and visit here often.
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That list is very thorough! And yes, it does look scary. First read the book 36 Hour Day. It is the most recommended first book for dementia. Getting the legal affairs in order with a certified elder law attorney is a high priority. And so is living some good life now while you can - thing will get harder so enjoy the time together now to travel, do what you both enjoy, check off the bucket list. Love the idea of taking videos - I did not take many videos and regret that now.
You will adjust as time goes on and know when it’s time to do the many things you have to do. For the household finances, I was lucky in that it was something I did for most of our marriage - but if your DH is the primary person handling the finances, now is the time to begin learning what he does. You will need to eventually take control and you’ll want to do that before he does some crazy things with your money.
And just breathe, don’t panic. Come here often for advice or to vent or to validate all the feelings that come with this disease. We’re here for you!2 -
Welcome and sorry that you find yourself here. As @Annie51 said, "don't panic." I think a lot of us hit the panic button when we first heard the diagnosis, but we calmed down, read what this all means in day to day living, how to prepare for the future and so on. @Michellep's advice is critical. Over and above all that, download the DBAT staging (free). That has been my guide for preparing for the future…what to expect when. You can do this. Breathe
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I pretty much have things in order and the finances are not that impressive that I have to hire an attorney. He has a will and I have taken over bill paying, online accounts and finances. What I need him to do is sit down and put his final wishes in writing to his brother. He wants to be cremated and ashes spread in a local garden park here where we live. His brother will want him shipped 1800 miles north, big funeral and burial up there somewhere. He doesn't want that so while he is still sharp, I need him to put that in writing and sign it.
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That is some scary stuff! There isn't a lot I need to do on a financial end as we really do not have much. Thankfully my daughter is 5 miles away and will step in and help. There is also a nurse living next door to us. We've been married 26 years and it's hard to believe that someday he will look at me and not recognize me.
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it is beyond finances- you need a Durable Power of Attorney, medical power of attorney for starters. I would get information on Medicaid for paying for a memory care facility.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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