New To This Community

SusanF629

Hi. I am new to this Community and just wanted to say that I'm grateful there are others out there looking for support and answers. My DH was just diagnosed with Dementia (no specifics - at least not yet). This is and has been rough to deal with since it all happened suddenly. Everyone including 5 doctors for the past several years, only thought that my DH was suffering from Severe Depression and nothing more. This has totally disrupted my life and that of my daughter. We are NOT elderly and I often only thought of this disorder as an elderly one only. This is shocking, terrifying and just plain horrible. I still need answers as we do not have a definitive diagnoses for my DH although, it does look like my DH may have FTD unfortunately. Any advice or comments from others is welcomed. My DH is going to Long Term Care tomorrow and I'm freaking out.

GG06

Hi SusanF629,

I am so sorry for you and your family. My husband was recently diagnosed with FTD semantic and behavioral variants. He is 64 and I am 55. He is late early stage, so not as far along as your DH. This forum has been a lifeline for me even though I’ve never posted and I have only recently commented. You will get incredibly helpful information here. Before we got the diagnosis I wasn’t sure if my husband had early onset Alzheimer’s or FTD. I read everything I could on early onset dementias. Now I focus on FTD. It helps me to learn as much as I can about the disease. I wish I could offer more helpful advice. I’m struggling with the reality myself.

SusanF629

Hi GG06. Thanks for answering my post. This is and has been gut wrenching to say the least. It does seem through the research I've done, that my DH has FTD unfortunately. However, no one will give him a solid diagnosis. I've never heard of this before and it's totally crazy. All of the doctors say that a diagnosis can only be given after death through an autopsy. So, my question is -- how the heck are others diagnosed? This doesn't make any sense to me at all. I'm freaking out because we are not that old (at bit older than you) but not ancient. My DH is going to a nursing home tomorrow (and he only got diagnosed with Dementia a few weeks ago) and now this - it's all happening too fast. He has to go to the Nursing Home (Memory Care) due to his behaviors at home - he went after me and my daughter (I have an adult daughter with special needs that lives with me). The doctors at the hospital said he cannot come home. When I went to look at this Nursing Facility, It was scary to see the individuals there because they are all at least 85-95 and completely gorked out. My DH still talks, is in relatively good shape and doesn't appear to have any issues at first so, this will be rough for him. I'm so upset and worried at this point as I do NOT want to lose my home due to applying to Medicaid for my DH. I do not work and haven't for 32 yrs. because I'm taking care of my daughter. I never expected my husband to end up like this. OMG - what a nightmare. I certainly hope you can find some answers as well. There are some really good videos on Youtube for FTD. I will be starting to attend an online support group for spouses and caregivers of those with FTD. It's on Zoom so anyone can attend. I can give you the information if you are interested?? The next Virtual Meeting is June 13th from 12:30 to 2:00 p.m. It's facilitated by a Nurse and a Social Worker. Please write back if interested. Take Care of yourself!!

Ed1937

Susan, it is often difficult to get a doctor to specify the type of dementia because it is so hard to get it right. First diagnoses may later be diagnosed as a different type than originally thought, or they might have more than one type of dementia. So basically the diagnosis might be thought of as a professional best guess. There are certain things they look for.

When dealing with younger people, doctors will often try to pin the problems on many different things. People that young are not supposed to have dementia, so that might be the call of severe depression.

I really feel bad for younger people who have to deal with this disease. I feel bad for the older people too, but the younger ones have more to lose, and with a different set of problems.

Pat6177

Newcomers to the forum are often advised to make sure their legal affairs are in order. If you haven’t already done so, it’s a good idea to see a certified elder care attorney. Is your DH still able to sign legal documents? Do you each have wills? A trust if indicated? Medical and financial powers of attorney? HIPAA release forms? If your DH is not competent to sign documents then the CELA (certified elder care attorney) can advise you what steps need to be taken. The CELA can advise you on the best ways to arrange your assets and qualify for Medicaid. You don’t say how old your husband is. If he’s under 65, have you applied for social security disability for him? From what folks have said on this site, once you have a diagnosis of dementia, the application gets processed and approved pretty quickly.