Newbie - My D/H Dx MCI in April

Terri 2.0

Hi All,

Let me start by saying that we're both 69. My DH was diagnosed w/ MCI in April. July 12th we go to a Memory Care Facility for a full workup and hopefully find out which dementia he has.

I've noticed his memory issues for the last couple of years, but he's a lifetime alcoholic so I attributed his bad memory to being drunk.

He's had many falls and hospital stays due to drinking. Broken shoulder, multiple ribs several times, 12 staples in the back of his head, broken ankle, etc. In January he was in ICU for 6 days for withdrawal. He had complete weakness, just collapsed, so I called 911. His doctor in the hospital told me that he was taking it hour by hour to see if could recover.

We were told that he almost died; and that the next time he probably would. Since January he hasn't had a drink, but his cognitive issues are worse. In April he lost his job because he kept doing wrong things, and was belligerent about it. Three warnings; 4th time he was out.

Now he's angry at me all the time; gaslights me constantly. He tries to pick fights with me daily. For the first time he went into a wild rage, scared me, and I left for a few hours. I had a mani-pedi and massage, so I'm trying for self care.

He can't stand it if I try to go out with girlfriends, insists on coming along. If we order different dinners at a restaurant, he gets mad and says that we always eat the same thing. He despises being alone, and I still work part time.

He refuses to let me drive, gets angry if I suggest it. Yesterday he drove to the farmer's market, and got lost coming home. He got angry when I said we'd gone the wrong way, screaming at me to shut up. I put Siri on to navigate, which made him angry again, but we did get home.

He seems to betting worse exponentially, anger is intensifying, and he suddenly has OCD through the roof. Never had OCD before.

I know that he's frustrated, but I am too. The MC has a separate program for caregivers, but I can't start that until he's evaluated. I'm concerned that he will drink while I'm out; the liquor store is 50 yards from our house, right on the corner of our neighborhood. Will he forget that he can't drink? Or not care?

I know this is long, but I need help on how to cope, and help him. We have no living relatives, never had children.

ThisLife

Hi Terri WNC,

Welcome! I'm glad you found this forum but sorry you have a reason to be here. There are many members on here, and you will find information and support. It's a very caring community that does not judge.

You have several moving parts to your situation. I'll address a couple and let others join in on topics I am not as familiar with.

1. Do you have all the legal documents in place such as wills, trusts (maybe), DPOA, health care proxy, advanced directives etc. If not, you need to make an appointment with a CELA to get these done. This costs a bit but usually a consultation is free. Due to DH behavior, you may want to initially go to an appointment on your own. If he is your DPOA, you need to get that changed ASAP as he is probably not competent to make these decisions for you.
2. Leaving for a few hours when DH went into a wild rage is a good choice. For your safety, you need to keep car keys and a charged cell phone on you at all times. You need to have a room that you can lock in case you can't get out. Some people just go into another room, outside, sit in the car, etc. I like your self-care though.
3. Driving is a big red flag! There a serious liability issues for drunk driving and driving impaired (dementia.) You could be sued for everything you have as well as the possibility of injury or worse to others. Sounds like this is going to be a touchy issue. A few states mandate doctors report the diagnosis to the DMV. A few others allow someone to anonymously report this to the DMV and will then pull the person in to be assessed. Check with your state. Will the doctor who diagnosed him with MCI tell him he can't drive?

These are just some basics. Others will be coming along to expand on what I have and other facets of your DH's behaviors.

Best

Ed1937

Terri, welcome to the forum. Sorry you need it. This life gave you some good information. The very first thing you need to do is to get him to stop driving. There is no doubt about that. Make a call to his doctor to see if he/she will give an order to stop driving, and find out if they will contact the DMV to make sure this happens. Even if you have your own assets, you can be held responsible if he gets in an accident because you are his caregiver. It's possible you could both lose everything. Try your best to blame someone else for him not being allowed to drive (blame it on the doctor).

Then you need to see a CELA (certified elder law attorney) if you haven't already. They can protect a lot of assets, draw up necessary legal documents such as DPOA, financial and healthcare, etc. You will also find out how Medicaid works in your state. This could be in your future unless you are pretty wealthy.

Wernicke-Korsakoff syndrome is a type of dementia that is at times reversible. It is a lack of vitamin B-1, and is often brought on with alcohol abuse. But for any chance of reversing it, he will have to quit drinking alcohol, and be treated medically.

One of the best things you can do is to become as knowledgeable as you can about dementia. Read a lot of posts, ask a lot of questions, and read a lot of posts again. There are also a lot of good videos on youtube for caregivers. Two of my favorite go-tos are Dr. Teepa Snow and Dr. Natalie Edmonds, who you can find by searching for "Careblazers".

Here is a good link to an article for understanding the dementia experience. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun  

I'm sure you will have more replies to help.

Iris L.

You are thinking of him as a normal but stubborn person. If you start thinking of him as brain-damaged with a terminal illness, it will be easier for you to follow-through on what to do. Notice, I did not say "easy", but "easier". Meaning, easier than letting things progress the way they are now, because you and he are heading for a crisis.

There are many threads regarding dementia and alcohol abuse. You might want to read them. Also read about anosognosia. It means he does not know how compromised he is. He will never know. Read a lot of threads, many answers are here.

Iris

Terri 2.0

Thank you guys; some eye-opening facts. We do have the paperwork This Life and Ed mentioned, but I know nothing about Medicaid (we're not rich) so I'll look into that. Also, he's my POA, and I don't know who else it could be. Iris, you nailed it; I do think of him as a normal, stubborn person. He's always been the most stubborn person I've ever known, so this is no surprise. He's always had anger issues, but now it's over the top. He definitely knows that he's compromised; he talks about it with me.

He had an (automatic with age) evaluation driving exam a few months ago, and passed with flying colors. When we go the MC in July, I'll be sure to bring it up in my private session. I already brought it up with his GP, but he didn't seem alarmed at all.

He's been sober for 6 months now, and had a pretty thorough work up last month. All of his numbers were great, bloodwork was completely normal, so his body has recovered, very surprising. He's Type 1 diabetic, and his A1c was good.

He has a part time job again, working for a friend who's aware of his MCI. If he has to stop driving, he won't be able to work, and I hate to imagine what would happen. It was difficult when he broke his ankle and couldn't drive for 2 months; 2 surgeries on his ankle and leg, long recovery time.

I feel stuck, like I'm frozen in time until we go to MC in 2 weeks. I'm a very laid back person, not much bothers me, but I'm rattled now. I'm a fixer, and I can't fix this. Not knowing which type of dementia he has is driving my research brain nuts. We'll be at MC a full day for evaluation for him, and caregiver sessions for me, and meet with the doctor together, both first and last for an hour each. Then I'll have continuing education in-person classes. I'll feel better if he gets a diagnosis.

I'm walking on eggshells, careful what I say or do that might anger him. I always seem to set him off with the little things.

I will contact a CELA, for sure. I need to be sure that all the legalities are in place. Thanks, I hadn't thought of it.

I have so much reading to do!

Iris L.

Terri, I've been a member here for many years with a diagnosis of cognitive impairment from my neurologist. A geriatrician tried to get me to accept that I had dementia, that did not go well. I fell into a deep depression for nine months. For the record, I do not have Alzheimer's Disease. A minority of PWDs don't have anosognosia and may have some awareness. Since all of the current public awareness of dementia is totally negative, patients are rightly scared to death. The dementia journey will be rough, but there are ways to make it not as rough as it could be. These are the many issues that the members post about.

You say he talks about his diagnosis-what does he say? He does not have to be completely passive in his own dementia journey. He can get information and make decisions. Of course, this will depend upon his understanding. Frankly, I would not get my hopes up, because alcohol abuse complicates dementia.

Be aware that most GPs are not familiar with the complexities of caring for a person dealing with dementia and certainly not dementia plus alcohol abuse. The members here are very knowledgeable and experienced about all aspects of dementia. Read a lot and post whenever you have a concern.

Iris

Terri 2.0

Iris,

He'll readily tell people that he has cognitive issues, and that he forgets things. He'll tell me when he's lost an item, that he "stuck it somewhere again, "curse, curse". I've learned to either joke about it, or quickly replace it. This won't work if he loses something major, I know.

He forgets what things are called, so his conversation often is full of "whojie wajies, hoo ha's", etc. If I ask him which hoo ha he's talking about, if he slows down and thinks, he'll remember. Sometimes he'll just say that he doesn't remember, and curse about "losing his "curse" memory".

This morning we went out to breakfast, and he couldn't decide what to order. He looked at me and said that he seems to have lost his decision making, and told me to just order something for him. We were headed to play putt putt, but he decided that we didn't have time, he had to get to Walmart to buy bleach. I said ok, but I was disappointed. I thought it was OCD, because once he thinks of something, it has to happen NOW. Certainly not the first time that's happened. I don't make many plans with him, because he can decide last minute that he doesn't want to go. That can be expensive.

So we talk about it, not really at length. I'm not sure how he feels about going for his evaluation; sometimes he thinks they'll decide nothing's wrong, and other times he he resents it, and talks about how he's so healthy now, he can't understand why he's having issues.

He has never wanted to talk about negative things. His parents died in an accident when he was 12, his only brother died before I met him, and he's rarely talked about it. Probably 3 times, briefly, in 20 years. So I'm surprised that he talks about his MCI at all.

I'm learning a lot from reading here, and I downloaded The Dementia Experience recommended, and I'm half way through it. I feel like I've been punched in the gut. Reality is poking through my denial, and I don't like it one bit. I'm scared actually.

All of my close friends have passed, except the last one who has dementia, and doesn't know me anymore. Until now, I've had no one to talk to. The support groups here all meet virtually, and since he's always here, I can't do that. I tried to see a therapist virtually about a year ago, and it wasn't good then; upset him terribly.

I still can't wrap my head around what's happening.

Iris L.

You and he might look into Best Practices. These habits may prolong the early stages and improve functioning. Read about and adapt to your own household.

--take medications as prescribed

--eat the Mediterranean diet with antioxidants (fruits and vegetables) and omega-3 fats (fish and nuts)

--exercise vigorously to tolerance

--continue to stimulate the brain with new learning

--continue to socialize in small groups, avoid crowds

Also avoid stress, get restful sleep, and consider alternative or complementary therapies as desired.

Note: these are not promoted as a cure, but as possible helps.

Iris

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SDianeL

Get the book "The 36 Hour Day" it helped me so much. My husband was diagnosed with vascular dementia 2 years ago. The Neuro-Psychologist said he should not drive. She said he had visuospatial difficulties and could not judge speed, distance or time. He probably could have passed a driving test. The only thing I noticed was that he drove very slowly. Once they list the memory loss diagnosis in his medical records he should no longer drive. I told my husband what she said and that we could be sued and lose everything and he agreed to stop driving. That was one year ago. He's NOT happy but he agreed. MY DH has the exact same issues that yours does. He can't find the words, he loses things, he doesn't understand relationships (mother, daughter, etc), we haven't been out to dinner in years because he couldn't decide what to order, now he doesn't recognize certain foods and has a food aversion screaming at me that "he's not hungry" but after I fix it and put it in front of him he will eat. He's not angry at you. He's angry at the disease. You become the parent. He becomes the child and he resents it. He's not stubborn. He's lost his reasoning and logic ability. His mind doesn't go from point A to point B anymore. It short circuits. My DH wouldn't shower. Not because he was stubborn but because 1. he didn't remember when he showered last and 2. showering is a complex task. I learned that in the book. So I told him "let's shower on Wed & Sun when we go get your newspaper. (for some reason he finds comfort in reading the paper). Then on "shower" days I get his shower ready, body wash, wash cloth, even turn on the water for him. Just tell him that his shower is ready and eventually he'll go take it. Arguing doesn't work because you can't reason with them. It's exhausting and terrifying. I finally got caregiver support through the VA and have one afternoon a week to get my errands and doctors appointments done. Last important thing: In many states you can have both Medicare & Medicaid if you financially qualify. They don't count your home in the calculation. I know FL & LA are states that do it. You get much more help with Medicaid and Medicaid pays what Medicare doesn't.

Terri 2.0

Your husband does sound like mine. I downloaded "The 36 Hour Day", and will read that next.

I wonder if DH has vascular dementia? In March, 2010 he had a Left Basal Ganglia stroke, which he mostly recovered from. He also had a femoral artery triple bypass 3 years ago.

He seems much worse than he did in April. I'm wondering if he's not trying to hide it as much since his dx, if I'm just more aware, or if it has progressed. When he was dx'd, the first appt. that we could get at MC was in July; it's been a long wait. Hopefully we'll get some answers.

I didn't know the CELA could recommend someone to handle my affairs, if necessary. I'll need to do that; it is a big concern for me. Thank you.

Luckily we decided to do our traveling while we were in our early 50's. We were all over the place for a few years, which I'm grateful for. If I do convince him to go away for a night or two, I see that it was a mistake. Now I don't make plans at all.

He still enjoys restaurants, just not as much, in a hurry to leave. He seemed ok yesterday with asking me to decide for him, so we'll do that until we can't.

We switched to a Mediterranean diet last summer when his A1c was way too high. We still follow it albeit with some cheating. We go for 2-3 mile walks 3x a week, weather permitting. We have a treadmill and weight station in a spare room, and we both enjoy that for now.

He was a great cook, but that's dwindling. He made breakfast the other day, and each item was served separately, instead of together. Now I understand the "one thing at a time".

I don't know what will happen when he can't drive anymore, maybe now. He was such a bear when he couldn't drive after he broke his ankle. If I wasn't home, he'd sneak out and go somewhere with his big airboot; not safe. I worry that if he loses his license that he'll just drive anyway.

I've always handled everything financial, and we have no joint accounts of any type, and our vehicles are titled in one name only - the primary driver. Our house is joint, nothing else. That was my decision when we got married, so nothing will be different there.

For a while now I thought that he hated me, blamed me for everything, always seemed like he was seething below the surface. Now that I'm aware, we haven't argued. Yet. I'm trying.

Until now, I haven't had anyone to talk to about this. This forum has really helped.

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Terri 2.0

The MCF is outpatient only; their name is confusing.

I don't believe that DH will refuse to go for his evaluation. He knows that I'm going with him, and he thinks that in our separate sessions that I'll be tested too.

I just hope that he doesn’t convince them that he’s fine; he’s good at that with his doctors.

jfkoc

Please be certain that all treatable possibilities have been ruled out. This is the first step in diagnosis and all too often it is not done.

Iris L.

Let the doctor know what you have been observing, all that you have posted here. Send a brief FAX the day before the appointment so the doctor can read and be prepared. This is one of the work-arounds.

Iris

Lgb35

Great idea Iris! My DH tries to minimize the impact of his MCI and if I tell the truth in doctors appointments he then is mad at me as if I was criticizing him.

Iris L.

Terri, I did not review the entire thread but be sure you familiarize yourself with anosognosia. The PWD is unaware of having dementia and will resist and become upset if you try to convince him of it or talk about it. This is why you must learn work-arounds. Some family members have a technique of signaling the doctor to confirm or not confirm what the PWD states. Some PWDs may be aware of having a bad memory, but they do not appreciate the full meaning of dementia.

Iris

Terri 2.0

Iris, thanks for opening my eyes about anosognosia. After several hours of reading about it, I'm convinced that's part of his issue.

Sometimes he talks about his memory and going to the Memory Center for evaluation, other times he'll say that it's just normal aging. Either way he believes that our insurance is requiring memory testing for both of us, so he's fine with going.

Since the evaluation is Wednesday, I bought movie tickets to see the new Mission Impossible movie on Tuesday, make it a date day. I wanted to keep his mind off of our appointment, just in case.

I didn't realize that with anosognosia a PWD could go back and forth with knowing, and not knowing. Now that I've read about it, it explains a lot of what's been happening. The days when he doesn't remember he clowns around like always, both of us cracking up at each other. He's the opposite when he remembers.

Every day I learn something new, just reading posts on here.

Iris L.

Terri, I read your initial post. Don't get your hopes up too high for your July 1th appointment. It is difficult if not impossible to make a concrete diagnosis after one visit. Be prepared for further testing. Your DH has the complication of chronic alcohol abuse, along with possible brain injury from his many falls. If you do a search, you will see many threads regarding alcohol and dementia.

For future reference, be aware that many PWDs become overstimulated from viewing disturbing media, such as action movies or TV shows, even the evening news with stories of mayhem. You will have to observe his response to these.

Caregiving is a learning process. It will help you to read a lot of threads. Don't hesitate to post questions here, because the members know the answers!

Iris

Iris L.

Terri, the important thing to know is that with or without a concrete diagnosis at this time, there are many steps that you can take in the legal and financial areas that will serve you well. Don't wait on getting a definite diagnosis.

Iris

Terri 2.0

DH got his "most likely" diagnosis. For right now his geriatrician says she's leaving the diagnosis as MCI, likely leading to vascular dementia. We're waiting for an appointment for an MRI, then another follow-up dr. appt. His worst score was on the executive function test, but she said there's no reason for him to quit driving.

She did start him on Zoloft, and we'll see if that calms him down a little.

Funny, she said that his high IQ and education level was skewing the test results, and she called him a Rock Star because of it. He's just thrilled about that, and is still dancing around the house singing "I'm a rock star".

I attended my first caregiver class yesterday, and he forgot where I was. When I came home 4 hours later, he was Mr. High Anxiety, ran outside when I pulled up. He calmed down when I told him where I'd been, and now he's saying that he's glad that I'm learning about his issues.

We're getting somewhere, but I'm not sure where yet.

M1

Terri, the other term to become familiar with besides anosognosia is "showtiming"--people with dementia can put on a good front in certain circumstances, including doctors' offices, and those with high congitive reserve can be especially good at it. Sounds like your husband does that, too. Providers almost always say "MCI" first---it's as if they want to "ease" you into thinking about the diagnosis, rather than coming right out and saying dementia. I also think it's a natural human reaction to this common "shoot the messenger" situation.

I'm glad he's at least willing to cooperate right now and glad you have the local group to attend. Keep us posted.

Terri 2.0

M1, thank you. I felt like he gave an Oscar winning performance for the doctor. Thankfully she was going back and forth between us, so she would check with me to see what was true. But he did well on most of the tests, a couple were pretty bad.

I was sure he's get a demential diagnosis, and after his MRI he may well. I've seen a difference in the last few days, not in a good way.

He brought it up this morning, so we decided to go shopping and buy a few of the games that the doctor recommended. He seems happy that he's "doing something" to help himself, and some of them we'll be doing together.

I was sad for him last night. About a year ago he said he was tired of working the tv remote, and said that it was my turn. Last night I handed it to him while I cooked dinner. He brought it to me and wanted to know which button to push. That happened twice, then I went with him to "help". I realized it's too complicated for him and teared up.

The day before he wanted to replace the insides of my toilet tank (they were worn out). Two trips to Lowes, many hours of cussing, and he finally broke the toilet. A $20 repair has turned into a $600 full replacement. So now I have a plumber and a new toilet coming, hopefully next week. Thankfully we have 2 bathrooms.

This is getting too expensive for him to DIY repairs, so this morning we agreed that DIY is off limits for him, that I'll handle it from now on. He was so relieved to have that off his plate. Last month it was the kitchen faucet after he tried to repair it, then to replace it with a new identical one. I had to buy a 2nd new faucet and hire a plumber for that too. Some things I can do, but I know my limitations.

Anyway, I needed to either vent or cry, so here I am.

ButterflyWings

Terri I am sorry you are joining us on this one-way journey for your LO. You are in good company here as we all truly get it. I applaud you for your proactive approach. The advice you have received here is excellent, and there are so many great resources to educate yourself. You will be the expert on your DH's condition very soon if not already. The Dr's don't see what you see and will need to be guided by you. Trust your instincts.

For example, I encourage you to update the Dr. *urgently* by sharing the detailed information (observations, evidence) that you outlined in your last post. If he cannot operate a TV remote, how in the h*ll does a Dr. tell him he is OK to drive a large, heavy metal vehicle at high speeds with other moving vehicles and people? This makes me frustrated beyond belief as it is such a terrible risk. I originally thought the driving issue was about my DH's declining memory and that he might get lost. That is because dementia is misunderstood and stereotyped as just forgetfulness.

This forum helped me realize so many other aspects of dementias -- brain disease -- that affect judgement, vision, reflexes, spatial awareness, attention, mood (e.g., road rage). Siri can't alert him to the child in the crosswalk or the car that made a wrong move, requiring your DH to make a split-second defensive driving maneuver. Driving and finances are HUGE areas to protect our PWD LOs from themselves & their disease.

Given your DH's turning his anger on you at times, I encourage you to use fiblets, a don't ask don't tell strategy, and find ways to do what is necessary (like losing the keys and disappearing his car) without letting him know you are behind it or trying to reason with him.

harshedbuzz

@Terri WNC

I am so sorry you are dealing with all of this. I agree with @ButterflyWings on the driving issue. I can appreciate that you anticipate him being unhappy when he has to quit, but I agree that if he can't operate a TV remote, he's past driving safely. People think about dementia in terms of memory loss, but the losses in judgment and executive function will be impacting his ability to operate a vehicle safely. IME, cognitive reserve does preserve these critical "adulting" skills. This is complicated by the possibility of his likely vascular dementia which tends to progress in a series of plateaus and abrupt declines compared to Alzheimer's which tends to be a more linear decline. The separation of your assets does provide some protection if he were sued for an accident, but as his wife and/or POA you could be held liable for allowing him access to a car in a lawsuit.

That's not to say this will be easy or pleasant for either of you, but it will need doing. FWIW, my dad never let up on his quest to reinstate his license. Hours before he died, he asked me to bring a car to the MCF in case he needed to go out somewhere. He was far enough by this point, that I was able to indulge him with the conversation about which car promising to have it washed and gassed up before parking it in the employee lot which made him smile.

My father brought a lot of cognitive reserve to the party. At his last outpatient geri psych appointment some 6 months before he went into MC, he "aced" a MoCA. At this point he wasn't reliably continent and was delusional much of the time. His score was on the cusp of MCI despite fairly well progressed mixed dementia. His doctor said it was "off the charts" which dad repeated gleefully all the way down the hall and in the elevator until we got to the valet stand. I turned in the ticket and turned to watch my dad-- the life-long motorhead-- get into a car being driven by some random startled little old lady.

HB