Our Descent into the Rabbit Hole

Dio

Lately, I've been reading blogs and watching YouTube clips on caregivers’ journey with their LOs. Does anyone care to share yours? If too painful to stroll down this path/memory lane, please forgive and ignore me. Mine has been quite unusual and I wonder if others might have experienced something similar. Please be forewarned that my recap is long.

Our journey began last year as a mental health problem, or so it seemed:

Jul/Aug—A poster child of fitness with 6-pack abs and eating healthy, DH was plagued by severe insomnia (avg 2-3 hrs sleep) and anxieties due to work stress; personality changes included unusual irritability and irrational anger.

Sept—DH practiced meditation and sought inspirational quotes to combat stress. Missed paying a large bill; incurred big penalty and interest charges. Stopped driving due to a near miss. Panic attacks galore from work text messages or emails, thus, all electronic devices were removed from his reach.

Oct/Early Nov—Commenced short-term sick leave from work to combat stress.

• Began training me on paying bills and access to accounts while struggling to remember access codes (said in case something should happen to him; I believe he knew something was wrong); scribbled reminder notes in the middle of the night.
• Auditory hallucinations involved voices chiding and laughing at him. Once, a little after midnight DH spoke in 3 different voices (evil, sinister, his own) to each other and me…scary as hell!
• PCP prescribed .5mg Ativan to help him sleep (slept some but not through the night) with referral to psychiatrist.
• Didn’t want to stay in our home due to extreme fear of hurting his beloved tropical fish tank or doing something bad. Asked me to remove all “dangerous weapons.” So we stayed in a nearby hotel. (Toward end of Oct, was afraid of staying at hotel too.)
• Panic attacks hit more frequently and lasted longer; described feeling a rush, then panic starts. Believed that I was deceiving him; much resentment and anger directed at me.
• Confused about day/date; fear of doing something stupid; catastrophized all outcomes; lost confidence in everything—can’t brush teeth, go to bathroom, wash up, etc., without first asking me.
• Described fading in and out of reality, that he was awake, but really not: “I’m in, then out. It’s coming faster.” Repeatedly said, “Don’t listen to what I just said. That wasn’t me!” But each time, he hadn’t said anything prior.
• Once, while lamenting about his mental meltdown and fear of being taken away and locked up, he suddenly pointed to the window and yelled, “They’re here!” I replied, “Who? Who are they?” He responded that he didn’t know why he said that. (I was livid! He scared me so.)
• Mobility became stiffer and slower toward month-end, his walking was shuffled/labored, and speech was slow. One evening while eating, his arm abruptly stopped midway and couldn’t continue to put food into his mouth, frozen in place, as if someone had taken over control of his arm, preventing it from finishing its motion. That night, at the hotel, he told me to put away a pen and mini flashlight for fear he might hurt me with them. Worried and scared out of my wits, I took him to ER next morning.

 

(Throughout the month, I had tried to get him help and had contacted countless psychiatrists, who either were not accepting new patients or turned us away due to “insufficient time to spend on a case such as this” or “not a good fit” for the provider’s area of expertise…heavy sigh.)

ER/Hospital Stay

Very confused, scared and wanted to leave every minute upon admission. Neurology ran a battery of blood tests, ECG, CTScans, MRIs, spinal tap—all came back negative or unremarkable, except moderate atrophy of frontal lobe but was deemed normal for his age. DH at first couldn’t do the subtraction of 7 backwards but was able to the next round. (One doctor in ER suspected Huntington’s Disease; I nearly had a heart attack upon hearing that.) After a couple days in Neurology, DH was to be transferred to the psych ward.

While awaiting transfer, without any visible causal DH’s mental state plummeted into comatose-like. His head started shaking side-to-side then nodding non-stop, and his left face started twitching uncontrollably. He was awake but eyes were shut with tremors in hands and legs. A flurry of doctors surrounded him, but he was unable to follow instructions and had waxy flexibility while standing. This was so awful to watch. I was totally mortified! Finally, the lead neurologist proclaimed that he was catatonicking and injected 1.5mg of Ativan via IV. Within 30 seconds, DH recovered! He was lucid! He was back—mobility working, counting backwards swiftly and accurately, talking to the staff a mile a minute of his recent ordeal. Described that earlier he saw the clock’s handles moving at different speeds and that the clock was warped.

Unfortunately, next day I found him in the psych ward half comatosed and hooked up to an EEG machine. Ativan injection had worn off. I sat there for 6 hours watching his face twitch and legs shake while the EEG and video recordings went on. When he finally awoke he said, “I love you. I want to tell you before I fade again. I can see you from the corner of my eye. I hope you can forgive me.” Then he faded out. And I cried me a river.

Next day, he was walking using a walker and assisted by a nurse. (He suffered from bad leg cramps for several days during his hospital stay and was unable to walk the last couple days.) He kept asking, “Are you really here or am I imagining it?”

Well, the EEG showed no signs of seizure or abnormalities. Baffled all the doctors. They also didn’t think the catatonia was caused by meds cuz dosages were so low. DH was really agitated this day. He was crying and said just to let him go. My heart ached to take away his pain.

Over next 10 days, he fluctuated between being alert and fearful, confused and somewhat aware. Cognitive MOCA test improved from 6/30 to 24/30 to 25/30. After 2 weeks in the hospital, he was discharged with referral to memory care (which subsequently was denied, reason unknown) and to attend CBT. On day of discharge he couldn’t pass drawing the clock test. Dx was “unspecified anxiety disorder.”

 

Mid-Nov/Dec/Jan/Feb—

He was very happy to be home! But needed my help to lay out his clothes every morning. Occasional night sweating started. Memory gaps/lapses, unfounded fear and anxiety continued. Fluctuations in mood raged on; developed a fear of me leaving him due to his condition. (As I look back, I now realize so many of his fears were delusions.) Mood worsened over time and confusion more loopy in evening hours.

Saw a psychiatrist who believed DH’s condition was not a mental one but a neurological disorder, maybe FTD, or at least to rule it out, so he refused to accept DH and referred us back to Neurology at the hospital (which got rejected again, reason still unknown) and ordered DH to be weaned off of Ativan. We were left hanging at this point. So DH tried CBT for 30 sessions, to no avail. In fact, as the program progressed he grew more agitated and “intimidated” by the group including facilitators. Dx at this point was “Major depressive disorder, recurrent, severe with psychotic symptoms” and that he had pseudo-dementia.

Although anxieties and fears abound, plus repeating things to no end, he was able to make coffee and cheese omelet on his own, and maintain fish tank, feed the fish, clean house, wash dishes, do laundry and yard work, plus maintain personal hygiene. Started driving again, encouraged by folks facilitating CBT.

 

Mar/Apr—After 5 mos. of sick leave, he took early retirement at age 60 after 38 years with the company.

As “retirement being jeopardized” was one of his biggest fears, I thought seeing his pension check would bring him some peace/calm … I was wrong. Although he showed signs of improvement, Jekyll and Hyde became the pattern alternating every 2-to-1 days. On a good day, he seemed almost normal. On a bad, the fear dug in its ugly claws and wouldn’t let go, with new fears surfacing every day. Then the cycle became every other day, and then more Hyde days than Jekyll days. Would often state a concern then immediately follow up with “that’s not it.” Again, didn’t want to go home, and wanted to stay out as long as possible.

Then sundowning reared its ugly head (I was clueless then as to what was happening; obviously, I didn’t react well). It started one evening when he stood for over half an hour in the kitchen, unmoved like in a stupor. On bad days, especially, he wanted my full attention in the evenings. No matter what I did—turn on TV, listen to music, or open a book, he’d demand that I stop but wouldn’t say what he wanted. Needless to say, there were lots of yelling from me as my patience wore out.

Finally, we found a caring psychiatrist who suggested doing a neuropsych eval on DH. Results showed executive and cognitive functions severely deficit not due to pseudo-dementia but indicative of a neurological disorder such as FTD. Psychiatrist then referred us to a medical center to participate in research/clinical trial for FTD. After our forms were submitted, they dropped us like a hot potato without so much as a professional no thanks reply. We think the director didn’t think DH had FTD. Still, utterly unprofessional.

Toward end of April, sundowning got worse and lasted longer, and Hyde days occurred more often. Became more suspicious and paranoid toward me. Accused me of lying and acquiring divorce papers. Wouldn’t sign any papers/forms I placed before him. Resisted taking meds, called them placebos. If I offered suggestions to help him, his response was “You don’t have to do that!” His eyes looked hollow, like a deep black hole, devoid of emotion, spark and life.

 

May—the month from hell.

Sundowning got so bad that DH wouldn’t let me sleep. Once, he stayed awake for 36 hrs. He was a complete stranger during these times. The anger in him, the devil look, the bear hold on me and shoving, grabbing my wrists so hard that bruised them. I was scared. If I tried to lie down, he’d pull me up. If I went downstairs, he’d push me upstairs, and vice versa, repeatedly like a yo-yo. During a 2-week span, I had to call the police 3 times to de-escalate. They took him to ER, but each time once he calmed down he presented his angelic side, so the hospital discharged him. At least I got several blessed hours of sleep while he was in the ER.

By this time, his psychiatrist suspected LBD and prescribed rivastigmine along with Ativan. The combo worked! DH slept soundly through the night. With the new cocktail, he seemed more aware, but not necessarily in a good way. One night, he asked, “I’m not going to get well, am I? I should just surrender and accept it.” My heart just lost another piece. Also, many of the prior fears returned and started recycling into his purview. While the cocktail didn’t alleviate his anxieties and fears, it did stabilize his mood some and allowed us to sleep through the nights. No more calls to the police, so far.

 

Jun/Jul/Aug—Ran more tests to rule out other possible causes of his dementia.

Saw a neurologist to rule out epilepsy seizures; he concurred with possible LBD. Increased rivastigmine dosage. DH presented well on brief cognitive tests. With the return of some of his cognitive abilities, his stubbornness and willfulness also returned, along with old fears and anxieties. Wanting/demanding to drive again, but no way will I allow that. His mood still fluctuated but nothing compared to May.

 

Sept/Oct—It’s been a year since our journey began, so to speak.

His long-term memory is still in tact, even better than mine. But short-term is definitely problematic and declining. Thankfully, he still can maintain, even conscientious about, personal hygiene. And he is more amenable these days.

But he’s progressing into the disease in so many other areas. In addition to not being able to choose what to wear for the day, he cannot execute the steps necessary to get dressed without asking whether to put on this or that first, t-shirt tucked in or out, etc. He’s lost interest in watching TV, maintaining his tank, feeding his fish, engaging in any hobbies or working out at the gym. Other than enjoying walks and going out to eat, he just sits or paces at home, and is completely glued to me—if I’m not within earshot, he’d start panicking. He can’t operate his cellphone, computer, remote controls, or pay bills. He doesn’t remember how to cook omelets now and has trouble completing the task of making coffee. His right hand shakes when exerting little strength and has difficulty using chopsticks. Like Russian roulette, his fear of the moment can change and strike without rhyme or reason. He asks questions and vocalizes fears repeatedly. Like a young child, he must be reminded of what to do step-by-step. And like a rebellious child, he resists doing what you ask and often would do exactly the opposite. On his Hyde days, it consists of endless looping of questions and fears (btw, his list of fears can fill a book), antagonizing what I say, suspicious of my every action and word, and resisting taking meds. On his Jekyll days, he’s sweet as ever. No one would suspect he has dementia.

Recently, we saw a memory disorder specialist who was unconvinced that DH has LBD and ordered an MRI to compare to last year’s. He proclaimed this was a challenging case. All I can hope for is, no matter what the diagnosis will be, that we can develop a solid treatment plan going forward.

 

As I look back on all that transpired prior to and during his hospital stay, DH certainly possessed the many symptoms of LBD, IMHO. Oddly though, these symptoms seemed to have dissipated. Did his symptoms regress? Anyhow, this past year I’ve gone through hell and back, and had to learn so much more than I’d ever want to. Most importantly, I am working to become a better caregiver.

 

And so our arduous journey continues… I’m scared to death as to what lies ahead. But in a strange way, recapping this past year has been rather cathartic.

 

If you are still here, thanks for reading my post.

M1

I was thinking LBD as I read your description; my sister in law died of it in December 2020, and so many of the early manifestations were motor in her case (couldn't stand up straight).  I'm so sorry Dio.  Hard to believe it was all attributed to anxiety.

Crushed

Mine began in 2009.  DW has just been appointed to the highest position in her medical area in the Federal government. She was 57.  Her new position was policy and future oriented  and she no longer had 60 people reporting to her for operational tasks. Much could be done "remotely"   So we finally had time for some real vacations and couple activities.  We went to South Africa and scheduled trips to Hawaii and Alaska and diving in Bonaire.   

 Personally she was being friendly romantic and seemed to always want to be with me.   So I was completely happy and missed certain signs which my daughters noticed.  Finally in Alaska in Sept 2010 I discovered she had lost all mathematical ability.  I brought her home and she failed the clock drawing test. We took her to Johns Hopkins and they called it MCI -Amnesiac  but they knew and I knew it was EOAD

 That began 7 years of downhill sliding  until psychosis and wandereing led to Memory care in late 2017  She is still there.

David J

Dio, it sounds like you’ve been through the wringer this past year. What you describe is way different than what we went through (dx Alzheimer’s Disease). My wife exhibited movement and cognitive issues first, several years before behavioral issues and severe memory loss. As I was reading your post, I kept thinking “this isn’t like anything I’ve read about here on the forum” and kept hoping I’d read that the doctors finally made a diagnosis. I’m sorry they haven’t found anything definitive. It’s hard not knowing what is causing his symptoms, and I know what it’s like having multiple diagnoses from each doctor he sees. 

You’ve done great job of caregiving so far, and should be proud of yourself. This group of people in the forum can be very helpful and comforting as you go forward. I don’t write as well as some of them, but I was struck by the description of your last year, and had to respond. Keep up the good work and come back to the forum when you need to.

David

Ed1937

WOW! This is just mind boggling. I don't know how you were able to make it through this so far. I'm so sorry for both of you.

MaryG123

Oh Dio, I’m so sorry.  What a nightmare!  You must be exhausted and so sad.  Are you able to get some help so you can take a little time for yourself?

Sally56

All I can say is Bless you.

Iris L.

Dio, my early story is like your husband's except I didn't have seizures.  I had "frozen" limbs, trouble walking, I couldn't hold a pen in my fingers to write.  My memory was gone and I had bad, harmful thoughts.  I thought I might have had Parkinson's Disease, but evidently I don't.  I have a lot of comorbidities.  I have been on the memory meds for 12 years or so and they have helped me a lot.  I won't go into all my diagnoses or therapeutics, but my neurologist diagnosed me as cognitive impairment not otherwise specified.  

You said something about atrophied frontal lobe.  There is a book called "What if it's not Alzheimer's?", which may help you as a caregiver.  IMO, 85% of dementia caregiving is the same, so you need the same preparations.  Don't expect too much from a specific diagnosis.  The Alzheimer's Association says there are over 100 dementia diseases.  Doctors can't keep up with all of them.

Iris

Beachfan

I can’t imagine how you are able to function from day to day.  I hope you can soon get a definitive answer and a care plan.  You can’t go on like this much longer.  You are so brave!  Stay strong, but keep pursuing an answer.

Joydean

Dio, like others I don’t know how you survived the past year. My heart goes out to you and your husband. I pray you will get some answers, right meds to help your dh and give him some relief. Thank you for sharing. 

Iris thank you for sharing some of your story. How you have managed all by yourself is a true miracle. God is definitely watching over you! 

Gig Harbor

Dio I absolutely don’t know how you have managed for a whole year. He sounds very much like my friend’s husband who has LBD and has been helped by rivastigmine and Ativan. He has an ongoing delusion that he is going to be arrested. He actually knows it is a delusion but gets totally involved in it. On the days he is clear he is very capable. I don’t think he is as far along as your husband. LBD is probably one of the worst forms of dementia. Two things I would suggest is get a caregiver in for a few hours several times a week to get him used to the idea and start looking at facilities. It is never too early to do that even if you have no plans to place him. You sound like one of the strongest women I have met on this site. Praying for you.

jmlarue

I can only echo the other sentiments expressed here. I don't know how you've managed to handle such horrific behavior, especially being pushed and pulled around or being afraid to close your eyes to sleep. I simply could not handle it, myself. You've been a tower of strength and resilience that few of us could match. You have my utmost admiration and my sincerest sympathy.

Pat6177

Dio, thank you for taking the time to provide such a detailed description of the journey that you and your DH have been on. It is really educational. You are a strong and courageous caregiver. What you have had to deal with is challenging and then to add lack of sleep is over the top. I’m very glad you are on this forum.

terei

Your journey sounds hellish.  I am so sorry you are both going through this.  Much of what you relate is very very bizarre, even for dementia.   This is a very long shot, but has your husband been tested for heavy metal poisoning?  There are so many neurological symptoms you  mention.

 https://rarediseases.org/rare-diseases/heavy-metal-poisoning/

Dio

Dear Friends, thank you for reading my story and responding. My sincere gratitude!

I had hoped someone might have experienced a path similar to ours where extreme psychosis preceded the onset of memory problems. Anyhow, just trying to find answers--none of the doctors could explain it. Maybe getting a diagnosis isn't the key, after all. I don't know. I just need to survive. It's only been a year and already there were too many times I've been on the verge of collapse. I'm not that strong. I'm not that brave. I feel like a wimp compared to so many of you warriors.

Iris: I honestly don't know how you've been able to manage by yourself battling this cruel disease. You are one of a kind miracle. Thanks for the book recommendation.

Gig: I can't even begin to list all of his delusions, which he absolutely believes are the truth...sigh. Thanks for your recommendations.

Terei: Our case is in deed "bizarre." Doctors are all baffled, but they don't want to dwell on the history of progression. I suppose they have a point. It's more important to deal with the present going forward. Btw, our psychiatrist saw that the hospital had missed doing a heavy metal toxicity test and ordered one; result again was negative, including a UTI test.

ImMaggieMae

Dio, I don’t know how you’ve survived this year. You are definitely not a wimp, you are a strong person just trying to find answers and some sort of treatment plan to help you and your husband cope. You’ve posted pieces of this journey before, but after reading this about last year, I can see why you were asking about some sort of diagnosis. The medical community has failed your husband in many ways by refusing to treat him or continue in several cases. I hope you have a doctor/doctors now that you can trust.

My husband has many of the same short term memory issues as yours, but no delusions or hallucinations. His diagnosis was Alzheimer’s/bvFTD but I think they may be rethinking the FTD since the main characteristic was the fast movement from years of MCI to moderate dementia. He too, had several CT scans and MRI’s as well as a PET scan that revealed little. The CT scans have all been “unremarkable”.  So I can’t offer any advice there. 

I’m convinced that after a point it is medications that can keep things under control and even enhance cognitive functions. From what I’ve read, when PWD are kicked out of MC facilities or nursing homes due to aggressive or disruptive behaviors, it is increased or different medications like antipsychotics that get them under control in whatever facility they end up in. Finding a good neurologist or psychiatrist who knows these meds seems to be the key.

I wish you the best in getting answers and effective treatment.

CD5

I wish I could give you an insightful helpful response, I’m sorry, I can’t.  Just want to send you a virtual hug and let you know that you are an amazing caregiver. When I get frustrated for repeated questions, I will think of you and that will put things in a proper perspective.

Iris L.

Dio, I am not doing well and I am on the cusp of a catastrophe.  The only thing that is saving me is that I still retain some of my medical thought processes and I am able to use the internet to try to figure out what to do for my various illnesses.  IMO, current doctors are not holistic or patient-oriented like Dr. Marcus Welby, but they tend to focus on only one symptom or disease.

For your husband, speaking medically, with a complicated case, we would at times focus on a trial of treatment, even without a definite diagnosis.  We would go with a "working" diagnosis and follow-up based on the patient's response.  Since psychosis seems to be most troubling, a consultation with a geriatric psychiatrist might help.  I don't know if you have done this already because I did not reread your original post.

In any case, don't give up!

Iris

Dio

MaggieMae: Thanks for sharing your experience! From what I've read on various discussion forums and support groups, I'm not holding high hopes on any positive outcome of next MRI. The best is if we get into a research program or clinical trial. If not, so be it. I firmly believe that our path is already set in motion, call it destiny or grand design. Whatever will be, will be, which has been preordained.

In all of the darkness this past year, we were given a bright light to help us. We are extremely fortunate to have found a compassionate psychiatrist (old school, whose specialty is in PTSD, which at the time was what I thought DH suffered from) who has been our fierce champion in pushing doors to open for us. He doesn't have any dementia experience but has doggedly researched the subject and reached out to his colleagues to learn. He ordered the psych eval for DH. He prescribed the right meds that curbed DH's sundowning. He personally contacted the memory and aging medical center's research director to get DH into the program--unfortunately, that didn't work out. He then directly contacted the epilepsy specialist (at the hospital where DH had stayed in and the same dept that rejected our referral) and got us on his appointment book. When we were subsequently referred to a memory disorders dr and the first appt was May 2023, he got back on the phone with the epilepsy dr and worked his tenacious attack once more... So the appt got moved up, not only was it with the medical director of the memory and aging dept himself but the appt already took place 2 weeks ago. It was surreal what our psychiatrist has done for us. He's also the one who had found and recommended to me this discussion forum support group among other resources. My guardian angel hasn't completely abandoned me.

CD5: Thank you for your kind words and support.

Iris: I'm so sorry to hear you're not doing well. I hope you have friends nearby or some kind of social support to help. We haven't reached out to a geriatric psychiatrist yet but will keep that in mind.