Newly Diagnosed

mdpooch

My husband was recently diagnosed with mixed dementia with alzheimer's (Frontemporal and Vascular). It has been hard on me to see this but at one moment he understands and then at another moment he tells me that it is all in my head, and he gets combative. I would appreciate any advice.

Ed's mom

I can't help with advice, others here are great with answers. You're not alone mdpooch, there are many of us on this journey

jgreen

Hi @mdpooch Welcome and glad you found us. This is a wonderful group of caring individuals and has been a lifesaver for me.

This terrible disease is going to be a marathon for you, so take your time and learn as you go. You will find that things you try one day to care for your DH might not work the next - it is all going to be trial and error. So learn as you go, pick yourself up if you stumble, and at the end of each day give yourself some grace for doing your best.

If you haven’t already, hire a certified Elder Care Attorney and get your legal, financial, and health care papers in order. When I initially sat down with our attorney, she was full of information and suggestions on how to navigate the many options and services available to caregivers. I went alone the first time so I could speak freely and tell the lawyer about our particuolar situation. It will cost some money (probably $1000-$2000) but worth every penny.

There are some good health professionals out there with information and advice for us caregivers. The few recommended to me and that I am happy to pass along are Tam Cummings, Teepa Snow, Natalie Edmonds and Camille Sinclair. The book ‘The 36-Hour Day’ is an excellent reference.

‘Don’t argue with someone whose reasoner is broken’. Your DH has anosognosia - the inability to recognize impaired function (not denial) in memory, general thinking skills, emotions, and body functions. You will learn a lot from everyone here about how you need to get into our LO’s world now because they are no longer in our world/reality.

Stay in touch with us. We care.

MariaN26

https://alzconnected.org/discussion/76800/newly-diagnosed

My husband was diagnosed 2 years ago with Alzheimer’s dementia. Prior to and after the diagnosis he kept trying to convince all of us including his doctors that he hit his head and that is why he was having memory issues. He even made up a story about the injury. He still flips back and forth between understanding what is happening and the head injury story. His memory doctor said that many patients will deny what is happening until they can no longer remember what is going on. As the disease progresses he doesn’t talk about the dementia or head injury as much. My husband is also combative from time to time. This increases when he is tired or going through sun downing (there is an increase in anxiety, restlessness and irritability in some dementia patients when evening begins). When I told the doctor the different things he was doing she prescribed anxiety medicine for him and that helped some. My husband was diagnosed at stage 3-4 and is now in stage 5. This journey is a roller coaster ride of emotions, fears and worries. When I stopped worrying about what was going to happen and where would we be a year from now, two years from now etc. I was able to handle things better. I now take it moment by moment and day by day. Some days are wins and some days are hard. When he becomes combative, go into another room. Take deep breaths and remind yourself it isn’t him but the disease doing it. Speak to his doctor and they will give him something to help. I started journaling things that come up between visits so I could let the doctor know all the changes I have seen. This helps her to know where he is in his progression and what our next steps are. Everyone here is going through the same or similar things or have gone through it. I am sorry you are going through this too but I am glad you found this group.

Michele P

https://alzconnected.org/discussion/76800/newly-diagnosed

Welcome. I would keep a journal of his symptoms and behaviors and discuss these with his neurologist and/or geriatric psychiatrist. Others here can tell you the names of medications their loved ones were prescribed for this behavior. If you haven’t already done so, consult an Elder Law attorney to get your legal documents in place while he can still sign documents. You will need to take over all finances. Get a list of all accounts with log in and passwords. Do the same for all bank and brokerage accounts, computer, phone. Put all bills on auto pay. Nothing comes through the mail!
If your husband is still driving, take the keys. Car insurance companies will not cover an accident with this diagnosis leaving you open to get sued for everything you own. Alzheimer’s impacts reaction time, spacial orientation and focus while driving. Confusion can occur causing the driver to not recognize familiar surroundings or get lost. Come back here for help and support. Ask questions when you need help. Buy The 36 Hour Day. It will help you prepare for what will come. I keep all phone conversations with anyone connected to care, resources, notes from doctor visits in a notebook.

mdpooch

Thank you, I ordered the 36 Hour day yesterday. I will keep all this in mind

mdpooch