New to this site
I'm just starting this journey. DH is 83 and is in total denial. He thinks his "slippage" is due to age and nothing more. He refuses to be seen by a doctor for anything other than managing his high blood pressure.
He is functional, but slowing down. The big thing is his fantasies or hallucinations. He "remembers" many things that have never happened. The most recent concerns the neighbors across the street and he is making some wild claims.
Right now, I'm not arguing, but I am trying to redirect him….with varying success. I have sent his PCP a message about this, hoping we can figure out a way to get him diagnosed.
I'll happily accept suggestions and advice.
Thanks for the chance to vent.
Comments
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Welcome to the best place to vent, get advice and meet others on the same road. It took a year to convince our PCP to get things rolling, my LO was just tested last week. Thanks to everyone here I was ready with my journal, examples in writing and more. The social worker said we cut 6 months off the process by my having so much documentation. Start keeping track of things in a journal and within a short time you will have a clear picture like I was able to present. You're going to have to be the advocate, phone caller, appointment maker and taker.
You're starting in a wonderful place and will find many others just like you here, I certainly have. Welcome.
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Welcome @RenoRebe
Tell DH he needs to go in for his annual check up so his Medicare stays active. This is called a ‘compassionate lie’ or a ‘therapeutic fib’. As @Ed's mom said, keep a journal of all the behaviors you’ve noticed (like the hallucinations’ etc.) I am attaching an assessment tool that you can use to keep track of all the changes you are witnessing. I was surprised at all the behaviors my DH was using to compensate
such as difficulty finding words or using humor to avoid answering questions.
Do come back and let us know how the appointment goes.
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Thank you. That's very helpful. At Speech Therapy, he was able to joke his way through some of the challenging stuff.
I'll be able to get him to the appointment; he loves the PCP. I'm worried that she will blurt out, "So, you're having memories of things that your wife claims never happened?"
I will chat with PCP in advance, through My Chart or slip her a note. She's young, but very sharp.
I have been keeping a journal—off and on since his brain bleed four years ago, and daily over the past few weeks.
Thanks again. I will keep reading and posting here.
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Welcome. You have gotten good advice here. Some other thoughts: your husband probably will never accept the diagnosis. It will be up to you to do whatever is necessary to get a firm diagnosis and plan for the future as your husband’s caregiver. The simple cognitive tests given by a pcp are often easy to pass. Your husband will need extensive cognitive testing by a neurologist and neuropsychologist. A brain MRI and PET scan of the brain are also necessary for a diagnosis. There is also a blood test to diagnose Alzheimer’s. The neurologist should order this with the brain scans. You are ahead of the game with the journal you are keeping. His past history of brain bleeding should be enough reason to do further evaluation. I would start getting your legal documents in order with a consult with an Elder Law attorney. You will need to take over all finances. Get account names, numbers, log in and passwords. Do the same for bank accounts, brokerage accounts, computer, phone. Keep a separate notebook with all the information you are told after making calls to in home care agencies, services provided through your local Council for the Aging including adult day care, and other service providers. Buy the book The 36 Hour Day. It will help you prepare for what’s coming. Put TILE gps trackers on phone, wallets, keys. It tracks the items and person. Get a plan b in place that involves putting him on a waitlist in the event you can no longer care for him at an assisted living/memory care facility. Without this, you could wait a year or more to place him if necessary. Let us know if your husband is a veteran. We can help with the VA. Come back for support and help. The people here are extremely supportive and knowledgeable.
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Thank you very much for this very helpful information. My husband is a veteran and I'm currently helping him to apply for VA medical benefits. His mother received Aid & Attendance from the VA, so we know what that process entails. I will likely need help, anyway.
All finances and assets are in my name. This is something that DH insisted on from day one…over 50 years ago. We have no children, and I know I will still need advice from a professional. I'm working up a list of things to get done while he's willing and able to participate. Thankfully, that is most of the time right now.
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The VA primary care doctor will start the process for you. You will be assigned a social worker who will help with his care. He will have an entire care team. If your husband is rated for disability, there might be other benefits including medical equipment and supplies, in home care, or a stipend through Aid and Attendance for out of home placement outside of a VA nursing home and adult day care. Make sure that a geriatric psychiatrist is on his care team. The Elizabeth Dole Foundation is another excellent resource for veterans and their caregivers. Your husband does not need to have a disability rating for the organization to assist you. There is an intake form on the website. Someone will contact you.
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I’m also new to this group. I joined just today and the comments have been so helpful. My husband (78 yo) started having delusions 3 weeks ago. He’s also in denial so I told him we’re going to his PCP for a routine physical. Before his appointment, I left a message for his PCP about what I have been observing and she managed it really well without any pushback from my husband. She ordered MRI and referred him to a neurologist.
We saw the neurologist yesterday. Before our appointment, I sent the neuro a message about my husband’s delusions (he thinks his dad is missing and was taken by bad people, his dad died in 1988 at age 86). So when we saw the doctor, I didn’t have to explain to her why we were there therefore preventing my husband to be upset.
From my experience, communicating proactively with his doctors has been so helpful. They did an Alzheimers Biomarkers blood test and now we wait for results. They also referred him to a neuropsychologist.
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Welcome. When you get the test results from the neuropsychologist, ask how the parts of his brain that are impacted affect his every day functioning. This was the best question I asked.
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Welcome. As others have said, the pcp won’t be able to do much. When mom did the quick assessment in pcp office, she did just fine. I had to push for a referral. After the 2 hour evaluation the neurologist said she shouldn’t drive and was not safe to live alone. Many with dementia have anosognosia and don’t recognize their symptoms or limitations. Trying to reason with them or get them to see their symptoms is pointless. Mom accepted her diagnosis in the beginning (although she thought she was in the very early stages), but just 1 year later she said the doctor didn’t know want they were doing and had made a mistake. Someone mentioned seeing a lawyer. If you don’t have a DPOA already, this is very important. If this has already been done, then you may have also appointed your husband as your dpoa. This should be changed. Dementia care is very expensive. You may also want to talk with your lawyer about the financial aspect of this. Keeping him home with you til the end might be the plan, but these things don’t always work the way we hope. It’s important to understand what care is available given your finances and if Medicaid may be necessary. I will add a few resources for you.
https://iona.org/therapeutic-fibs-ok/
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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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