How normal is it?
How normal is it to have someone go from mid to late stage 5 back to a 1 or 2 for what I think has actually been weeks now? My DH is almost himself. Though I'm grateful, I'm trying to figure out what I'm dealing with. His mother died of dementia. His sister was DX'd with EO 3 years ago, given a 4 year prognosis, took the experimental meds, made no other changes and is now facing MC. My husband seems to be reversing… It's very strange.
Comments
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Have you had him evaluated for Lewy Body? There’s no way to definitively diagnose it without an autopsy, but a good neurologist should be able to tell you if he has “probable Lewy Body”. It’s not unusual to see cognition, behaviors and stages change. The end result is unfortunately the same: the progression is slowly relentless, but it’s not always a constant downward; there are peaks and valleys along the way.
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No. I have kept him out of the medical system for a very long list of reasons. We've been going by symptoms and experience with his and my family members who have gone out this way who did have medical diagnosis and treatment. I'm just stunned that my husband is mostly "back". It's a little awkward as I've already "let go" as a wife and taken on the caregiver role. I'm trying to switch gears to match his condition. It's really hard to do this. I'm going to have to go back through all this grief again. But I am so grateful to have him. I've been so alone.
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there are many things that can cause dementia like symptoms that reverse when addressed. Some medications like Prednisone can cause it. Or it could be just a pause in progression. I would have him evaluated by a Neurologist to be sure. Glad you have him back. 🙏💜
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My DH probably stage 5 or 6 is going through a normal patch. If he didn’t have Aphasia most would think he is pretty normal. I of course know he’s not but I am enjoying this interlude. I dont care about more doctors visits, we have an occupational therapist who visits every 6 weeks I’ll let her know if I have any concerns, apart from that I’m enjoying this relatively ‘normal’ period and just hope it lasts for a while. Take care.
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I must add to my earlier response to How Normal Is It. My sweet DH to me is going through a normal phase. He still puts his shoes on the wrong feet, clothes on back to front and inside out, two or three pairs of undies at the one time, cannot shave himself or use a remote; but to me he’s normal. I miss him, I love him, he’s mine and normal reigns surpreme. Rather sad isn’t it.
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Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.
A couple of things in your post struck me as odd.
Firstly, the sister. While early onset does tend to progress more quickly than Alz in older folks, never have I ever heard of a doctor giving the sort of life expectancy you are describing at the time of diagnosis. Your tone suggests there was something your SIL could have done differently to avoid progression and for most dementias that simply isn't the case. It's hard to comment on "experimental drugs" without knowing what was given.What you are describing with your husband is quite unusual. Since your husband wasn't evaluated for Alz, a process that includes ruling out other conditions that have symptoms that mimic dementia, it's hard to know if what you think is dementia is dementia or something else. Normally, a PCP will start the dementia workup by ordering blood tests for vitamin/hormone deficiencies and imaging to look for strokes or lesions.
FWIW, both of my parents had others condition that had dementia-like symptoms caused by something else. Dad had mixed dementia, he did have early-stage Alzheimer's when diagnosed as well as an alcohol-related dementia called WKS which can be reversed to a degree with IV Thiamine treatment. While alcohol use disorder is the most common cause, bariatric surgery, eating disorders, cancer, HIV and extreme morning sickness can also cause this. With treatment, dad's presentation of dementia changed from stage 6 to about a 3 until he began drinking again.
When mom started with significant word finding and memory issues, I started with her PCP who did bloodwork and imagining as well as a quick cognitive assessment. Turns out, she had untreated Lyme Disease which resulted in cognitive issues which did resolve mostly with a course of antibiotics. I've also seen her display cognitive and emotional issues with so-called silent UTIs. Like SDianeL mentioned, my mother could pass for mid-stage dementia on higher doses of IV steroids— she hits 40mg every 6 hours and the wheels come off the bus.
Whatever this is you're seeing, I hope it continues.
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There are treatable things that can cause dementia like symptoms. If these things have not been ruled out I would look into it. I believe there is a vitamin deficiency and some other things that could be easily ruled out with a simple blood test. Its my understanding there can be ups and downs as things progress, but what you are describing seems more extreme than that.
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Maybe there's no such thing as normal with dementia sufferers. When DW was diagnosed with Alzheimer's eight years ago, the gerontologist estimated she would either pass away within two years or have to be in a nursing home. This Dr was a highly respected and competent expert in his field, incredibly thorough in the evaluation process leading up to diagnosis.
DW has good days and bad days, but the trajectory is downhill mentally and physically, although much more slowly than predicted. Good caregiving may be a factor.😊
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Hi HB,
I appreciate your comments and wanted to address a few things.
About my SIL, we received a phone call from my husband's parents 3 years ago giving us this very specific news. Because I have a disability that keeps me mostly home, I have not had as much in person exposure to her as would have been helpful. What I can say is that, in listening to phone calls with my husband, she has advanced rapidly. Her symptoms are similar to my husband's with the constant repetition, inability to dial a phone on her own, needing constant prompting from her husband to be able to hold a conversation. My husband's symptoms require my help in making phone calls (up until a few weeks ago maybe?) and have required help with details and sometimes correction of his memory of events (not long ago he was mixing up memories of trips with his brother in his youth with trips he thought he'd taken with his son). My husband's parents spent time with both she and my husband on a family trip. Their assessment was that my SIL was far more advanced but they definitely saw my husband's deterioration which broke their hearts. When I did ask my BIL and my MIL about my SIL's official diagnosis, they didn't think it was important. Relations are pretty strained because they don't understand my own health conditions that keep me from participating in family events.
As far as my husband's lack of diagnosis, when we first started noticing symptoms in his 50's, we weren't as experienced with what we were seeing. My own mother developed symptoms probably around 2012. Unfortunately this was around the time that I became disabled and that disability was brought on by medical treatments that damaged my brain. I personally had symptoms that were similar to both autism and dementia. It's taken me a very long time to recover some of who and what I was pre-damage and it's led to deep research into allopathic medicine and alternative treatments. So, for us, it's definitely not your conventional route of ending up on this forum.
My husband's mother was found to be having significant issues living on her own about an hour from where we were last living before moving to the country. She'd been very much estranged from her kids so the closeness that might have caught her deterioration sooner just wasn't there. However, in 2017 we received a call from her neighbor informing us of how far she'd deteriorated. We brought her to our home for about 7 weeks before realizing I was over my head and would not be able to care for her. My husband was working at the time. Another sibling took over care and moved her out of the area where she was placed first in AL but soon after was placed in MC. I never got an official diagnosis. Her death was actually unrelated to her cognitive/memory decline.
My husband's condition was horrendous to watch over the winter and into the spring. I was taking over all the driving. I couldn't send him out on his own even to the corner store with a note and have him come home with the one thing on his note. I stopped sending him at all when he forgot where he was going and ended up 10 miles away from where he was supposed to be. In June we had a project that needed done and I got a three step process going to make it easier to get it done. My husband couldn't manage those three simple steps without literal constant instruction (dig, pull, backfill - we were digging up an electrical connection in a field). Things have been rather messy in life these last few months so I wasn't watching closely enough to get dates down on paper but I would say he's been almost back to himself for 3 or 4 weeks. It was just last night I realized it had been more than just several days which is what prompted my post. He still has issues but he's able to remember how to operate the TV setup when he couldn't follow written instructions to do that himself at least two years before that. And he's been able to call me on the phone by himself which is not something he was able to do when really bad. The big thing is we've been able to have some real conversations again. He's not really capable of decision-making but he's capable of hearing me and responding with actual understanding and concern for what I'm saying. This is something that was also gone for so long I couldn't tell you when it was the last time we could talk like we've been talking.
I had a friend come and stay with us in May for a few weeks. Their assessment of his condition and stage according to the Alzheimer's site was early to mid stage 5. He got worse from that time for a short while but then started getting better. He is on homeopathic medications to treat other conditions and those have not changed. Our diets have improved though. He's eating far less sugar than he used to and I have him consuming some raw fresh juices as I'm making them for myself. I don't know if that's made a difference.
My husband's condition and deterioration really became pronounced in late 2019 into 2020. He had to be off work for knee replacement so, when COVID started, he was already at home. He took longer to heal than anticipated and during that time we made the decision to retire him early so he'd have time to enjoy some of life before the cognitive decline really took over. We did not like what we were seeing in terms of behavior of the medical community as things progressed with COVID so we opted to remove ourselves completely from the medical system. People can judge and fault us for our decision but it was made together over many years and for well-informed reasons.
As far as my comments go regarding frequencies, I would say the most important lecture I have listened to on this topic was one from Dr Martin Pall where he was addressing a crowd in Estonia. I can no longer find this specific video on YouTube though there are others there. This one is on Bitchute.
As someone who has become extremely sensitive to EMF, I can say that I get extremely fatigued and I get severe brain fog and can hardly function. My husband is starting to report similar symptoms and tells me he feels "stuffy" in his head. When he tells me that, he usually is going to have a bad day.
Our views and course of action may be far different than the majority on this forum but I hope it's still OK for me to be here to find support, to learn and to participate in this important community.
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Hi there @Joyful Heart
Welcome! I hear you! I too am in favor of naturopathy and holistic medicines. However, the way I choose to blend both conventional and naturopathy is that we visit our PCP to get a diagnosis FROM the conventional healthcare system, to then be able to treat whatever ails us, naturally.
You mentioned dietary modifications. I just learned that Rosemary, the herb, is a natural anticholinergic, on par, if not more superior to Aricept. I was curious if maybe hubby's changes could have come about because you unknowingly increased your usage of Rosemary.
My DM is the one with dementia. My concerns for her is what led me to this site. The family had been seeing decline in her cognitition for the past 3-5 years. She was just officially diagnosed in December. I fought to get her a diagnosis, though.
She failed an in-office cognition test. Her Kappa/Lambda ratios were elevated, indication possible amyloidosis which causes alzheimers. She just had an MRI which reveals she has vascular dementia.
She is also NOT interested in taking any pharmaceuticals. She is interested in dietary modifications and the use of Rosemary in her salads as well as using it as a tea.
I pray that your hubby's reversal is permanent but like others have stated, it sounds highly atypical. Perhaps you can seek out comprehensive testing and get an official diagnosis; not because his mother and sister had it, it does not mean he does…ijs🙏🏽
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It's interesting about the rosemary and we did just have some for the last few days. I should have thought of that myself. But I don't think that's the reason for the improvement as it started before I made the dish that had rosemary in it.
I hear you on the benefit of getting that diagnosis. We used to go that route pre-covid. When we decided to have him retire, he did so early. For both financial and personal reasons we opted not to have full medical. The insurance he had at his work prior to retiring early was nothing but catastrophic that covered little. And, as we had zero faith and trust in the system, we didn't want to pay to have that terrible coverage and still end up paying out of pocket. It made zero sense for us. I've looked for a reasonable provider outside of our hospital system as we live fairly rural. I haven't had any luck finding someone in a place I can safely get him to in my own condition. I'd taken some chances a few months ago to get a diagnosis for myself as I have my own concerns over what's likely cancer. I came away completely empty-handed and am still left guessing. With our finances and zero help, every last dime matters because it's going to be a long journey for us both and we don't have enough as it is.
He started fading back to his compromised self again last night. He's not all the way gone again but he's rolling right back down that hill. :-(
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I am so saddened to hear of his regression. Maybe the continued use of the Rosemary may help prevent a total regression.🙏🏽
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He'll be having some rosemary tea in the morning. :-) My fingers are crossed. I'm having some too! Thanks for the hope on that, Juliette! Love that name! :-)
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Thank you! You are welcome! Here is to keeping hope alive.🙏🏽
Having a strong family history, I too have added it to my diet. Maybe it will stall what I fear maybe my own fate.
May God be with us all.🫂
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Joyful Heart, I'm so glad you started this post. I'm not a doctor but all of my research in learning about the various dementia diseases, I'm guessing it seems your DH's story may fit the Lewy Body type where fluctuations in the early stages make it difficult to diagnose.
My story is that DH had many symptoms of Lewy Body Dementia but it took 9+ months to get an initial prognosis. It all started with a diagnosis of major depressive disorder severe with psychotic symptoms. He was not depressed, not bipolar, not schizophrenic. He was an anomaly. Four psychiatrists later, including one who refused to take DH on as a patient citing that DH's problem is neural and not psychiatric, and a battery of tests and MRIs later—which showed shrinkage of his frontal lobe, his last psychiatrist finally thought it might be LBD and prescribed Aricept. It worked like a charm the first night but DH starting going downhill fast with other behaviors and symptoms. Even Ativan didn't work. Epilepsy was ruled out including vitamin B deficiency and toxic chemical…the list went on. He was placed in MC because I feared for my safety, and his, for I might have had to hurt him to protect myself. Then he became violent in MC. The MC Director doggedly pushed the neurologist to prescribe Depakote. It worked like a charm. Over time, DH is almost normal now, although there are many things he doesn't remember. It's been 1-1/2 years since he started on Depakote. So now the neurologist thinks it's not dementia but some other autoimmune disease. Good grief! At this point, I don't give a hoot what it is. The combination of meds are working, so just let us enjoy this period. I've been warned by others about the unique fluctuations of LBD and not to think that DH is "cured." Some have reported that the patient could plateau back to normal for a period and then take a sudden dive when the medication stops working. The MC Director also said the same. In his experience, and he doesn't know why, but the Depakote may hold for 2 to 3 years and without warning the patient can become volatile again.
I truly don't have much faith in the medical world anymore. DH's neurologist is a renowned doctor at Stanford but his specialty is Alzheimer's disease. I'm grateful we were fast-tracked to getting on his patient list. Still, it seems his experience with LBD is limited. It has been such a guessing game.
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Thank you for your detailed description of what you've gone through in trying to help your husband and to get real answers. I'm so happy to hear you found something that has helped. I've been reading up on LBD. The movement issues and change in mood etc don't really fit what I'm seeing with my husband and I wouldn't call his condition early stages at this point despite his improvement that gave me some hope these last few weeks. However, I'm not ruling anything out. I'm continuing to try to research the types of dementia and any "alternative treatments" that have worked for others. It's about all I can do today. We're trying to figure out where we go from here given a long list of problems and large financial requirements to fix any of it. I'm feeling beyond overwhelmed today. Your response has really helped me though. I don't feel like such a lone ranger knowing I'm not the only one here who has felt let down by our medical system.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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