59 yo DH dx w/ EOAD April 2023

macjetta54

Hello, I am 54 yo and my 59 yo husband was diagnosed today with early onset Alzheimer's dementia. He's getting an EKG before starting on 5 mg of Aricept. He has also been prescribed speech therapy and genetic testing.

I would like to connect with people going through the same, or have gone through similar, who maybe haven't had a great marriage. I just feel so angry and trapped. He's been a bear going to the neurologist and accusing me of being a Benedict Arnold if I mention any of his paranoid delusional comments about the neighbor trying to kill him or how his driving is questionable. I really hate this situation. I'm not a nurturer, he was the nurturer when we got married. Now knowing that I'm stuck in this horrible situation that's going to get worse and could last 10 or more years, I feel deep despair. I'm only 54, I still have 10 plus years until I can retire! How in the world am I going to do this? I love him, and would never abandon him, but he's been emotionally abusive to me throughout our marriage, and now I'm so angry!

Our story: We've been married for 26 years. His second marriage, my first. He has a grown daughter, who is married with two girls. We bonded over drinking and boating and having a great time. The drinking got out of hand and he suffered a cracked skull in a fall in August of 2014 and has had many concussions from sports and work in his life. We noticed trouble with word finding, confusion, and memory in August of 2021. He lost his full time construction job in February of 2022 and has been out of work since. The situation has been rough on me emotionally and caused me to lose my full time account job. I do have a new job starting in May but I'm scared about how I will manage being in an office an hour away for three days a week. His sister's are all retired nearby and two have offered to help. He is still highly functional so I don't know what help I would even ask for at this point.

I've been managing the finances for us both completely so that is not an issue. He used to cook a lot more than he does. I feel like I need to oversee when he does cook because of his behaviors, like forgetting to turn off the stove, putting dirty dishes in the cabinets. He is still able to dress himself. He also drives infrequently (I think he knows that his driving is not as good as it used to be).

Tell me your story please and please offer advice on how to cope!

Crushed

DW was 58 with MCI diagnosis changed at 60 to EOAD

1) apply for social security disability yesterday Diagnosis of Alzheimers is all you need

Compassionate Allowances are a way to quickly identify diseases and other medical conditions that, by definition, meet Social Security's standards for disability benefits. These conditions primarily include certain cancers, adult brain disorders, and a number of rare disorders that affect children.

Effective Dates: 09/16/2020 - Present Previous | Next

TN 38 (09-20)

DI 23022.385 Early-Onset Alzheimer's Disease

COMPASSIONATE ALLOWANCES INFORMATION

EARLY-ONSET ALZHEIMER’S DISEASE ALTERNATE NAMES

Presenile dementia; Presenile Alzheimer’s disease; Young-onset Alzheimer’s disease; Familial AD; FAD; AD; EOAD

DESCRIPTION

Early-onset Alzheimer’s Disease (AD) is the diagnosis of AD for a person younger than age 65, and accounts for approximately 5 to 10 percent of all cases of AD. AD is a degenerative, irreversible brain disease that usually affects older people and causes a dementia characterized by the gradual loss of cognitive abilities, such as memory, language, judgment, and the ability to function.

Physiological changes in the brain include the rampant growth of two abnormal structures, amyloid plaques and neurofibrillary tangles, which interrupt normal brain activity.

The onset of AD is subtle; memory impairment is frequently its earliest manifestation, quickly followed by learning and language impairments. Because people with early-onset AD are often in the work force, it is not uncommon for the disease to first manifest as a decline or loss in their ability to perform work-related activities. In the earlier stages of AD, depression is a common complaint. In later stages, agitation, changes in personality and behavior, restlessness, and withdrawal become evident.

DIAGNOSTIC TESTING, PHYSICAL FINDINGS, AND ICD-9-CM/ICD-10-CM CODING

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

PROGRESSION

People diagnosed with early-onset AD experience gradual cognitive decline until death. Death usually results from pneumonia, malnutrition, or general body wasting. The average time of survival after diagnosis of early-onset AD varies but generally is 8 to 10 years, and many people with early-onset AD require institutionalization.

TREATMENT

There is no treatment to cure or slow the progression of early-onset AD. Treatment for the symptoms of early-onset AD may include drugs such as cholinesterase inhibitors (galantamine, rivastigmine, or donepezil) and an N-methyl D-aspartate (NMDA) antagonist (memantine).

SUGGESTED PROGRAMMATIC ASSESSMENT*

Suggested MER for Evaluation:

• •
• Clinical information documenting a progressive dementia is critical and required for disability evaluation of early-onset AD. The preferable source of this information is the clinical records from the claimant’s medical source(s).
• •
• Activities of daily living report or a similar report completed by relative or caregiver.
• •
• Documentation of dementia by standardized testing such as the Clinical Dementia Rating (CDR) scale with a score of = 1, MMSE with a score of = 24, or equivalent test is helpful but not required.

Suggested Listings for Evaluation:

DETERMINATION

LISTING

REMARKS

Meets 11.17

​ 12.02

​ Equals ​ ​ * Adjudicators may, at their discretion, use the Medical Evidence of Record or the listings suggested to evaluate the claim. However, the decision to allow or deny the claim rests with the adjudicator.

To Link to this section - Use this URL:

http://policy.ssa.gov/poms.nsf/lnx/0423022385

DI 23022.385 - Early-Onset Alzheimer's Disease - 09/16/2020

Batch run: 07/21/2021

Rev:09/16/2020

loveskitties

One of the difficulties with this disease is a true assessment of the LO's capabilities. The best advice is to do it based on worst days, not best. If you keep a diary of his inabilities daily, you may be surprised to find that he is not "high functioning" consistently.

You mention several things that are of concern, all having to do with safety. If his driving is questionable now, it will only get worse. Make a plan to get him to stop driving before an accident occurs potentially harming him or an innocent. If he is leaving stove on and unable to know where dirty dishes go, he should not be unsupervised in the kitchen. It only takes one lapse with the stove or other appliance to put him, you and all you own at risk.

You mention that he has sisters who are willing to help. A rare situation as many have no relations who will help. At the very least on the days you work they could "visit" to make sure all is ok, or come to fix lunch, or to do any activity with him to keep him occupied.

You cannot reason with a person with dementia...their world is different and no efforts to correct their perceptions will work...it will most often lead to conflict.

You say you will not abandon him...do you mean divorce or placement in a facility? With a prior history of verbal abuse, it is possible it will only get worse. You are at the beginning of a long process, but it is never too early to formulate a plan for when things get too hard for you to handle alone.

If you are not a nurturer (not everyone is) then you are going to find this journey of dementia extremely difficult. Dementia causes regression of mental and physical capabilities...if you feel you will not be able to handle that emotionally, you need to seek advice on your options for his well being and your own mental and physical health.

There is no list of "this is how it will be" as each patient is different. Some patients become child like and easy to manage...others (even with no aggressive history) will become a danger to themselves and/or others. That is what makes it so difficult to handle as a caregiver.

Please continue to post your issues and concerns. The membership here is so very helpful in offering their advice and what has worked for them.

jfkoc

Let me add that the journey is difficult but made much easier through your education....dementia 101.

You get legal and financial matters taken care of while your husband is still able to sign papers.

Then you learn not to reason, argue or explain. You find work-arounds to keep things moving and you learn to lie when it is in the best interest of your husband.

You come here for information and support. We will share everything we know.

We understand and we care about both of you!

JudyMorrowMaloney

I too am in a marriage that has never been that great. My DH has always been an angry person and verbally abusive and I can honestly say it got worse. He got more hostile toward me, started acting out in public, and throwing things around the house. I called the police on him one time and had him committed then placed in a facility for a while. If he gets violent, don't be afraid to do that. Its very hard and I know, I love my DH despite himself, but you need to keep yourself safe. He seems to have gotten past the violent and nasty stage but has physical problems. He feels weak all the time and can hardly walk anymore. Being physically inept is actually a blessing for me I hate to say because he can't wander anymore or come after me. Its scary. I can remember sleeping with keys in my pocket in case I had to make a run for it. Apply for disability as soon as possible and medicaid. Medicare does not pay for a care facility but medicaid does.

macjetta54

@Crushed Thank you for posting all of the information on SSA disability. Thankfully, we already have an appointment today with social security to apply for disability. @loveskitties I have been emailing myself notes about his bad days, and yes I should keep track every day. He has said that the neighbor is trying to poison him and kill him, and can be a bit paranoid about the neighbor in general. So yes, he is not always high functioning. When I say I won't abandon him, I mean divorce. As far as formulating a plan for when things get too difficult, do you mean adult day care? I can see him doing both, becoming more child-like (he kind of follows me around) and more aggressive and abusive. I so appreciate your feedback and advice.

JudyMorrowMaloney

Macjetta, also you should consult an eldercare attorney as soon as possible. They can guide you through the application for medicare and what you need to do to qualify.

macjetta54

@JudyMorrowMaloney Thanks Judy. We have an appointment with an eldercare attorney in two weeks. Do we need to apply for Medicaid or Medicare too?

macjetta54

@jfkoc Thank you! 🙏

loveskitties

Adult day care is certainly an option, but not a success for all.

By having a plan in place, it should probably be a more long term one with placement in a facility. I am not saying that needs to be now, but definitely the sooner you start looking at places and getting a feel for their care, staff, and costs...the more prepared you will be if it becomes a necessity. You may find that that option is not for you...either financially or emotionally...better to know now than in a crisis. It will also allow you time to ask for local assistance to determine other options.

Wishing you the best as you begin this journey.

Jgirl57

Glad you have his sisters nearby. Have him get used to them being around more by scheduling them “to visit” . So sorry and know that the despair feeling you are feeling is common and be sure to talk to your own primary care doctor about what is now happening with your husband. My anxiety increased after my HWD/Alz diagnosis . Come often to this forum .

M1

The attorney will help you figure out. If he qualifies for SSI disability (and he should) he will be eligible for Medicare even though he is not yet 65. BUT: yes, unless you are independently wealthy and can afford $10K+ per month for memory care (sadly that's what it costs these days), most people in this county have to also apply for long-term Medicaid coverage (different from Medicare) in order to be able to fund institutional care if it's needed in the future. Medicare will provide medical insurance and hospital coverage and Hospice care, but it does NOT cover long-term nursing home care or memory care, and it does NOT cover home health aide care. Medicaid programs (they vary from state to state, unlike Medicare which is Federal) do cover these things, but they are all "estate recovery" programs, meaning that they will try to recover some of their costs from your LO's estate after they die. The lawyers know how to assess your assets, protect what they can, and develop a plan that will help you to qualify for Medicaid in your state if you need to. How you spend your money matters--you can't just give it away, they look back for five years before you qualify for Medicaid. So the attorney help is usually quite important to be sure you do it right. Good for you that you've already got the appointment. And remember--you need a will and an. assigned power of attorney too, and your DH cannot serve in that capacity for you. You need to figure out who else could perform those legal offices for you if something happened to you., and who would be your backup if you could not serve in those capacities for your DH. Very important to think about. Good luck. These are the critical early steps after a diagnosis.

Denise1847

Did your husband have an MRI? I ask because you indicated he has had head injuries. It is possible that he may have normal pressure hydrocephalus, which can be treated via a surgical procedure. I am new to this site and trying to learn everything I can from the members and they are terrific.

My husband was diagnosed in 2018 but was showing signs 2 years earlier. His doctor at the time would ignore my expressions of concern about his memory. I changed doctors and then he immediately was diagnosed. We are in our early 70s. Try to keep connections with friends, family etc. as being able to talk to people (no dumping on them) that you can have an intelligent conversation with. Take care of yourself in whatever way you can. I read, pray, walk, nap etc. I was very depressed and went for counseling and the counselor said I was grieving as I was crying all of the time. So if you feel yourself going into depression, get help.

We have been married for 50 years and I am pretty sure my husband would not be sacrificing his remaining years caring for me. At any rate, I get your anger and fear. I used to mentally blame my husband for his dementia because he has sleep apnea and would never use a CPAP. He also refused to take responsibility for filing out form, managing anything involving business matters our entire marriage. I have gotten over anger because I think he would have done whatever he needed to to prevent his current state. Try to take one day at a time. Otherwise, you will get overwhelmed. Don't bury your head in the sand about his driving, violence etc. Whatever you need to do to keep him from driving and from harming you is what you need to do. I wish I could offer more. What has helped me most is that I have gotten very close to God. I have been totally broken by my husband's disease and that has made me become totally dependent on God to get me through this.

Crushed

use a good lawyer who can back date the allowance to the first symptoms |legal fees are fixed and resonable

social security will do naythng to use TODAY as the date of disability Do not accept that YOu can backdate for 9 months with adequate evidence

Crushed

Now to money

you have effectively become instantly poorer than you ever thought possible .

You need instruction in medicaid qualification

Keep working your income does not affect his institutional medicaid

You are a community spouse. Do not reject divorce as a method of protecting yourself. and getting him the care he needs

JudyMorrowMaloney

Macjetta, your attorney can guide you through the process. I don't know what the laws are in your state but he/she won't steer you wrong.

Ed1937

I would just like to add one thing. Make out a list of all questions you might have for the lawyer. Make sure you take it with you to your first meeting. If you leave it at home, you might not remember to ask all the questions that need answers. It is not uncommon for the first visit to be free of charge. Verify that when making the appointment. If it is not, or it is more than you want to spend on it, call another CELA (certified elder law attorney). At the end of the meeting, you will have a good idea what assets he/she can protect, what legal papers you will need (like POAs), and you should have a good idea how Medicaid works in your state. They will also give you a price for further consultations. You need to do this before long because if you wait too long, you will surely regret it.

sam2021

I’m in the same boat as you are . I’m 53 and DH was diagnosed at age of 57 .. now 59. It’s not easy.. sometime I hate him and want him to go.. trying to keep up my spirit and go on.. just hang in there, something good will come up.

macjetta54

Update: DH has already been approved for SSDI! It has to be a record. I was surprised it happened so fast. He is so happy. They made it retroactive to July. 

I have an appointment with the elder law attorney next Friday. Do l patients like DH normally join those conversations? I'm torn because I don't want to upset him. He seems blissfully ignorant most of the time. But I also want to be fair to him. 

I would like to understand more about medical assistance. Is that through Medicare? Or the VA? He was in the Navy Reserve for 6 years. He doesn't get a pension from them but may be eligible. Is this something the lawyer can help me with? We are already both on Medicaid assistance for medical. I will be eligible for health insurance through my new job in June.

Marta

That’s awesome about approval of SSDI!

Your husband will receive Medicare two years after the date of SSDI approval, so July of 2024. This is for outpatient and hospital medical care.

Medicare doesn’t pay for long term care or custodial care in the home.

it’s great he is already on Medicaid - Medicaid for long term care is different from what he already has, and has its own hoops you need to jump through. Be sure to ask the elder care lawyer about Medicaid for long term care.

I would definitely contact the VA about any benefits to which he is entitled.

If it were me I would not bring him to the appointment. He likely would not be able to process this meeting, and it would likely fuel his paranoia. You wouldn’t be doing this behind his back - you HAVE his back, as we often say on this board.

macjetta54

@Marta @sam2021 thank you for you encouraging words. The official letter from SSDI said he was deemed eligible as of February 2022, which is better than we expected. @Ed1937 @JudyMorrowMaloney I spoke with the CELA and she was very helpful. Thank you!

macjetta54

@Denise1847 I have been very depressed and feel very isolated. I just hate to think that this is going to be my life going forward and that it will get worse. I need to change up my meds and go to counseling.

CStrope

Macjetta54, I feel like there's a group of us here that are (or were) in the same boat as you. Not so great marriage, younger than our spouses with dementia, feeling stuck in this horrible journey. I am 60, DH is now 68. I am hoping to hold out until the end of summer before placing him, but there are many days when I want to do it NOW! My hubby too had some sports concussions, and an accident that caused a much more severe one. At first he was diagnosed with Alz, and now they have determined that it is more likely Frontal Temporal Dementia (FTD), or mixed dementia of the ALZ and FTD together. It took over 2 years before they finally came to that conclusion. There are definitely things that are different between the two, so my suggestion is research them both, talk to the doctors, and make sure you're headed down the correct path. Aricept can do more harm than anything if he does have FTD. I still struggle daily wondering if I'll have a life after this is all over, most of us dealing with Younger Onset situations do. Hang in there, and remember you are not only an advocate for your husband's welfare, but for your own too.

Iris L.

Re: him being blissfully ignorant most of the time. This is anosognosia, a characteristic of dementia that causes the PWD to be unaware of having dementia. You will have to learn and use the work-arounds that the members mention. This will be fair to him.

Iris

Noemit1966

Hello MacJetta, I'm sorry you are going through a hard time. I totally understand where you are at right now and how you are feeling. My husband was diagnosed with Alzheimer's at age 57. He is 60 and I can see more of a decline in his disease even though he screams that there is nothing wrong with him. I am 57 and I had to retire with 22 years of service from a job I adored, and I am still angry, sad and emotional about it. We had future plans that have been crushed. I am being understanding and loving because we have been married for 40 years. He is on Donepezil & Memantine for the Alzheimer's treatment, Sertraline for the depression and many supplements that were suggested by the Neurologist and PCP. Please let me know if you need a list of them. Stay strong! Take care, Noemi

Dio

I know this may be off topic, but for those who have LOs with Early Onset dementia, please remember to look into applying for SSDI. I think the rule is that a person needs to be under 65 yrs old and is declared incompetent to work in the future. The wait period is 5 months since last day of official full time employment. I learned this the hard way, but thankfully I read the section about this in my DH's retirement handbook.

Denise1847

Dear MacJetta,

Please take care of yourself. This is such a difficult process to go through. Please take care of yourself. Get the counseling, meds etc. You will find that you will go from crying jags to anger to saddness and sometimes peace then it will recycle. I am focused on gratitude and what we do have to be content in the situation. I find that if I look at other people's lives or what I had plans to do (lots of travel), it takes me down so I don't go there anymore. I have really gotten most of my peace from reading the bible and praying. I remember lying in bed feeling like I was in a dark pit (I also live with a failed back surgery and chronic pain) and begging God to help me. Because you don't get the answer you asked for may just mean "no" or "not now. "