New here(13)

sandwichone123

Hi. I'm Diane and I'm new here. My dh and I are in our late 50's, and he's been having increasing trouble with speech (finding words, etc.) and now some memory issues. He has trouble remembering skills he doesn't use often, and recently had trouble with a routine task for work and trouble signing in to his favorite computer game. He likes to drive, but he's increasingly distractible (goodbye Christmas decorations!) but seems ok for now.

We don't have a diagnosis yet but are in the process of evaluation (MRI and CT done, EEG done, waiting for other testing). We're both still working from home full time, but it seems clear to me that he can't maintain it for much longer. I just hope he can keep his job long enough to get some disability set up or something, and that I can keep working.

CStrope

Hi Diane, I feel like you and I are at about the same point in our diagnosis with our DH.  I too am in my 50's, while DH is 66.  Hopefully we can be good info and support for each other and we begin this unwelcome journey.

We have cognitive testing scheduled in 2 weeks.....not looking forward to that.

Hang in there

Joe C.

Hi Diane, Welcome but sorry you had to seek us out. There are lots of great & caring people here that will willingly share their experience and advice with you. One thing I always suggest to new members is to meet with a Certified Elder Law Attorney to get your legal and financial house in order. Putting this off to long can have devastating consequences. You want to have your wills, health care proxy, durable power of attorney in place while your husband to still competent to make legal decisions. The other suggestion I give is find a local caregiver support group which you can search for on the ALZ home page. These groups can be a great place to find what resources are available in your local are and find people who will understand what you are going through. All the best.

[Deleted User]

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Ed1937

Diane, welcome to the forum. Sorry you need to be here. Follow Joe's advice above. It is spot on. 

You will come to like it here because you can ask any questions you might have, you will find understanding and support here. And you will learn more about dementia here than you will from a doctor. 

Learn all you can about the disease. It will help you understand why things happen, and how to handle them. Here is a good link for you to get you started. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

amicrazytoo

Follow Joe’s advice it is spot on! Sorry you have to be here, but this is a place that can help you more than you know. You are not alone.

Crushed

My wife was MCI at 58 and EOAD at 60 . Early onset alzheimer's is a scheduled disability  disability under Social security compassionate allowance

https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022385

 Diagnostic testing: There is no specific clinical or laboratory diagnostic test for AD. Diagnosis can only be confirmed by brain biopsy or postmortem examination of the brain. The diagnosis of early-onset AD is based on the combination of clinical and family history; neurological, cognitive, or neuropsychological examination; and neuroimaging.

Pertinent clinical information includes history of onset and description of cognitive and functional impairments at home and at work. A decline in Mini-Mental Status Examination (MMSE) scores over time is a likely indicator of possible dementia. Neuroimaging, such as computerized tomography (CT) or magnetic resonance imaging (MRI) is useful for observing changes in the brain and excluding other causes of dementia.

ICD-9: 290.0, 290.1, 290.10, 290.11, 290.12, 290.13, 294.1 and 331.0

ICD-10: G30.0, G30.8, G30.9

Iris L.

Consider short term disability pending completion of the diagnostic process and possible trial of medications.  If the diagnosis is determined to be one of the dementias, he can apply for long term disability.   

Iris L.

sandwichone123

Thank you, CStrope. We also have have cognitive testing in two weeks, and a followup in March, but I hope we'll at least get some feedback sooner. Good luck! Are you still working?

sandwichone123

Thank you, Joe! I'll call my Employee Assistance line Monday and see what I can find out about resources. Other than POA and healthcare POA, are there specific other things I should be asking about?

sandwichone123

Thank you Victoria. He's a federal employee, which means there are at least processes that are (theoretically) understandable before firing. I'll call my employee assistance line on Monday to try to find out what resources are available without getting his employment involved (that, and I ask clearer questions). One of the difficulties I'm having is that I can intercede with most situations, but not really with his work.

sandwichone123

Ed, thank you for the link! I read it and will send it on to my son (23, underemployed, living back home now). I feel like I understand how to cope with AD (or whatever it proves to be) better than many, but coping with work and finances around that has my attention.

sandwichone123

Thank you, Iris. Is short-term disability a benefit from his employer, or a government program?

Joe C.

Diane wrote:

 Thank you, Joe! I'll call my Employee Assistance line Monday and see what I can find out about resources. Other than POA and healthcare POA, are there specific other things I should be asking about?

Diane, The laws in every state differ when it comes to what assets you can protect and everyone situation is different. For example in MA the custodial spouse can protect $128,000 in savings and the primary residents from Medicaid spend down in other states the rules are different. Some individuals will find it beneficial to set up a trust others do not need to go this route. I realize you think these decision are a long way off but the sooner you understand what you need to do and get a plan in place the better off you will be. You really want to find some who specializes in Elder Law and understand all the rules in concerning wills, trust, DPOA, etc. For this you do not want to use the lawyer who help you with a real estate transaction or previously set up a simple will, it is important to have some focuses primarily on Elder Law.