Falling apart

WeepingWillow

It feels like everything is just falling to pieces. I feel like my family is imploding and no matter how hard I try to hold everyone together we're all falling apart in our own self destructive ways. We're in our 40's and DH has EO still in early stages. We got the diagnosis about a year ago and he's still (understandably) struggling to accept/ acknowledge it and is dealing with it by not dealing with it. This is causing problems with our marriage and kids. I don't know how to help or what to do and I'm just so tired.

Jgirl57

sorry this is so hard; first know that because of the diagnosis , he will probably never acknowledge or accept it. There is a term for this : anasognosia ( if I spelled it correctly). For us, the early stages were very difficult and I cried a ton of tears and we fought a bunch during the process of getting a diagnosis. Once I started reading here on this forum, read Tam Cummings information, read The 36 hour day and watched several Teepa Snow videos , I felt more empowered to take action and just do what needed to be done ( manage finances, medical coordination, legal papers in order ) . Take it one step at a time …..; Step one : Breathe and know you can do this !!!

SDianeL

it is overwhelming. Get an attorney if you haven’t already to get DPOA and Medical POA and other documents. Don’t wait. Learn all you can about the disease. As jgitl57 posted, Read the book “The 36 Hour Day” ” and have your family read it. Search for Tam Cummings videos on YouTube. Take over your finances if you don’t already take care of them. File for Social Security Disability for him if he’s not working or as soon as he is no longer able to work. One thing that helped me communicate with doctors is that I kept a list of his behaviors and sent them monthly at first then more often as new behaviors emerged. I did not show the list to my DH. Put it somewhere he can’t find it. Get a referral to a Geriatric Psychiatrist who is best able to prescribe any medications he may need. You can no longer reason with him. His “reasoner” is broken. He doesn’t realize he has the disease. It is called anasognosia. Google the definition and you will understand. Take one thing at a time. Enjoy every moment. Take care of yourself. If you are able get help with housework. Come here often to ask questions or vent. We understand what you are going through. 💜

SDianeL

https://alzconnected.org/discussion/72561/falling-apart

Anosognosia is a neurological condition that causes people to be unaware of their psychiatric or neurological deficits. The term comes from Greek words meaning "without", "disease", and "knowledge", and literally translates to "lack of knowledge of the disease". It's also known as "denial of deficit" or "lack of insight". Anosognosia can affect people with a range of neurological and neuropsychological disturbances, including dementia, Alzheimer's disease, and stroke. 

Biggles

I am so sorry for your predicament, it’s horrible, unbelievable and a living nightmare. Good practical advice given above, it’s so sad and bewildering, my help came from this forum venting often and asking questions, also an article on this forum called The Cavalry’s NOT Coming, search for it, it’s a straight forward discussion that gave me the courage to press forward. I send hugs, we know what you are going through and we all care.

Quilting brings calm

First- he’s not capable of ‘dealing’ with it. He can’t fix it, he can’t make it manageable by changing his behavior. Even if changing behavior could somehow make it manageable, he’s not able to change his behavior because his reasoning is broken.

What can be done is for you to assume all the financial and legal decisions with a POA, medical ones with medical POA, and the gradually all the decisions on household maintenance etc. Don’t wait for him to admit defeat and give it up, just quietly start doing it. If he balks at a POA, go about it by saying it’s time to update the wills, and to get the POAs so that the children are protected if one of you has an accident and us in a coma, etc. but don’t make him as your POA. Handle that by discussing it with the attorney separately. There will be so much to sign, he won’t notice not signing that form for you.

sandwichone123

I agree with all the other commenters about getting legal affairs in order and taking over all finances and anything of importance.

The other very important thing is to protect the children. A person with dementia often becomes abusive to one or more of the children, and they deserve a safe home. Others may feel differently, but in my opinion if you have to choose between him and your child, protect the child. It's very likely that's what his healthy self would have wanted.

H1235

I have attached a link for new caregiver help. I recommend the staging tool, understanding the dementia experience, and 10 absolutes of dementia care. You need to make the decisions now while somehow letting him think he is making them. Don’t argue you will ALWAYS loose! Just do what needs to be done. I can only imagine how different that will be. In my opinion don’t be afraid to tell a fib here or there if it makes things easier for you and probably him(this is common). There should be no shame in placing him in a facility if it come to that.

https://alzconnected.org/group/32-new-caregiver-help