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He’s 82 and in January this year finally admitted he was having severe memory problems. I thought it would be years before he would get to this stage. I don’t understand what’s happening and wasn’t prepared for this rapid decline.
This very thing just happened to my mother. In a very short time she went from about stage 3-4 Lewy Body Dementia to end stage dementia. She no longer remembers me or my daughters. She can no longer really speak and just lays or sits there watching tv. The point is, I 100% understand where you are coming from. It’s so hard to witness. I’m extremely sorry you are going through this.
Cattlei, I thought I would absolutely die when I realized he didn’t know who I was. We’ve been married 24 years and all of a sudden I’m a stranger to him. There have been moments that I’d think he knew me, and in a split second he’d ask what my name was. It’s just gone bad so fast. Thank you for caring.
It *might* be natural, but swift, decline. But I would look into other possibilities immediately. Urinary tract infections (UTIs) are *notorious* for mimicking a shift downward, or outright psychosis. But medicine imbalances (even when things have gone along fine for awhile) or other, treatable, biochemical issues may also be at play. Hope you find good answers, and hope they're as happy as possible.
I agree to first have him checked for something treatable, but I wonder if he has a history of cardio vascular disease and/or TIA or stroke, vascular dementia is known to progress in a step wise way with sudden declines followed by plateaus.
Cwillie, he had a heart cath two years ago for an arrhythmia issue that showed zero blockages. Ct scan showed no stroke with mild shrinkage. He’s always had high blood pressure which is now under control. His older brother died st 81 from dementia. He started with memory problems, paranoia and being suspicious of everyone. These last two months, especially August, have been like falling through a rabbit hole. Many days he can’t feed, dress, bathe himself or understand the simplest thing I ask him to do. I have an appointment Monday for him and I’m going to see if his doctor will admit him for tests, because he’d never stand for them on an outpatient basis. He’s not been officially diagnosed with dementia. Thank you for your help.
I’m glad you’re having him seen by his doctor. Sudden changes in ability to understand and speak can be several things, stroke among them. Hoping you can get some answers and help for you both
All of the responses here are helpful: UTI, TIA, but yes, I have seen sudden declines take place and they are real. Did anything stressful or traumatic occur just before this sudden declines that would have caused an emotional/psychological shut down? I have seen declines brought on by fear, anger, depression, loneliness. If it's VD, sounds as if it could be more vicious atrophy. Have your doc rule out the physiological concerns first. If there is no underlying health issue, I'm sorry to say it must be a particularly agressive decline. I'm sorry you're going through this. Please know you are not alone in this. You're not. Reach out for support. Our hospice social worker was here for three hours last week and just sat and listened to my daughter and I because we needed the support. You are providing your husband with the ultimate gift: love, safety, protection, compassion. You are his hero. This does not go unnoticed or unappreciated. And just because he doesn't remember doesn't mean you don't. Cling to that. Hold on to it and love him for the man he was and the man he is now. You can do it. You are braver and stronger than you know. Take care, sweetie.
Dorian, thank you so much for replying. Nothing stressful or any changes have occurred. I was looking at his CT scan report today from January, and it said there were chronic microvascular changes in the white matter from two years ago. Do you think another CT could confirm if it’s VD? I’m just astonished that he doesn’t recognize hardly ANYTHING. Less than two months ago he was walking daily saying he wanted to lose some weight, and now he doesn’t understand what the word means. I’m hoping his doctor can tell me something Monday. I’m here 24 hours a day with him and wouldn’t have it any other way, but sometimes I need someone to talk to who understands this horrible monster that’s destroying people’s lives. Thank you again Dorian.
"chronic microvascular changes in the white matter" would be damage from TIA's/silent strokes.
When my mom had an MRI her doc told us that it "lit up like a Christmas tree" and sent us off to a neurologist who treated her aggressively with stroke prevention in mind. No one ever explained that all those mini infarcts could cause cumulative damage, like most of the population I had never heard of vascular dementia until I started searching the web trying to figure out what was happening to my mother, who was fine until she suddenly wasn't. Because her doctor left his practice my mom fell through the cracks in the system and was never diagnosed, but you have the opportunity to keep pressing your doctors for an explanation. Sometimes you need to channel your inner xena warrior princess to get what you need. And read read read everything you can about micro infarcts.
My sister did the same thing. She had frontal lobe problems and it affected her speech functions. It was very upsetting and very frustrating. All I could do was try to read her eyes to see if she could comprehend what I was saying to her. We kept her in her normal routine and just did the best we could.
Merrij, it is a horrible thing to not be able to communicate with your lo. It’s also so very sad when he tries to tell me something and it’s as though he’s speaking a foreign language. I lie down to try to sleep and just keep saying over and over that this can’t be happening, and that when I wake up, it will be better. When I do wake up, It never is, or it is worse.
My 82 yr old dad declined from understanding calculus to his parallel universe of dementia in two short months also. We were baffled the same as you because most of what we read about is a steady slow decline over years.
Dad's brain MRI showed advance white matter lesions, kinda sorta like a stroke in slow motion. His small vessels in the brain rupture intermittently, doing irreparable damage to nerve connections in white matter. It makes strange silent type stroke symptoms. He enunciates completely normal, yet lives in a different world that includes extreme paranoia.
Hard to believe just three months ago he was driving and walking and shopping all day without a cane. Now he needs a walker or wheelchair.
It is interesting to hear other fast track stories. I wish you comfort with kindred people here. Take care of yourself.
hannahBN, my husband was an extremely intelligent, well educated man and today he doesn’t even recognize the electronic products he designed. He also was driving long trips and making good decisions a few months ago. In late March, on my birthday, he drove to town and bought me flowers and candy. Now he doesn’t know me. Today I asked him if he could count backwards from 10 and he couldn’t even understand the question. Thank you for your reply.
A rapid, sudden decline happened to my Mom in 2012 . It started on New Year's Eve when she was talking along and all of the sudden her sentences were coming out backwards. We rushed to the ER expecting a stroke or something equally scary but there was nothing of note on any of the tests she had. Over the next 6 weeks, she continued the rapid decline to the point that she barely knew her family, had trouble walking, was sundowning, etc. She was diagnosed at a reputable hospital's Alzheimer's unit as having both Alzheimer's and Parkinson's even though we told the doctors that she had made Thanksgiving dinner for 26 people just 2 months prior. The doctor said, "It's definitely Alzheimer's - I'd know that look anywhere." At the rate she was declining, I didn't think she'd live for more than 6 months longer. That is when I joined this forum. Long story short, it took about 5 months but she gradually got back to normal. I remember being so ecstatic the first time she set the table correctly. Now it's believed she had delirium. No doctor could give a reason for it but she had just come off a very bad year both physically and emotionally and I felt her brain just finally shut down from the stress of it all. Over the last 6 years she has gradually declined and that's awful to watch but the speed at which she went downhill for that five months was truly scary. Of course, have all the usual suspects checked out - UTI's, TIA's, etc. as a rapid decline like that could be delirium brought on by any number of things. I'm so sorry you're going through this. I wish you the best and hope you can get some answers so you know what to expect going forward.
My best friend's husband seemed to be fine, a little tired just before Thanksgiving, He died January 15th. All of us were shocked at how fast he went. I agree with being sure he doesn't have a UTI or something else, I hope for your sake that he pulls out of some of this. He will never return to "normal". I urge you if you don't have your legal ducks in a row, do it ASAP. My heart goes out to you. They have decided my husband could take 10 years or so to die. He is 86, I am 84. It is scary to think I might not be around to take care of him. He has no children and mine live a long way away. Sometimes, you don't know which way is the worse. When I was having chemo years ago, I was grumbling to my pharmacist about the side effects. He said, "Mary, it is either bad or worse". I always remember that.
MaryKathleen, your pharmacist was spot on in this case also. As soon as he realized his memory problem was going to get worse, and his doctor had advised him also, he took care of all legal issues. I’m so thankful to God that he did. I sure would not want to have to worry about those now with all the other things I’m trying to manage.
Hi Pandarose. This is a very tough time for You seeing Your Husbands rapid decline. I know for sure if I will be diagnosed with alzheimers or dementia I would want the end to come quick as it robs the Sufferer of every thing. Memory, balance, speach, and leading to organ failure towards the end. UTI's are lethal and a Nurse told me Tia's leave a mark as each shorten the life of the Sufferer. Try to organise Carers to do day and night shifts if You have the means to do so as You could never manage on Your own. I did Care for my late Mother for two years and ten months with out any break but It is dreadful tough on Your own. It's the sleep deprivation that wears the Carer down. Keep in touch with this wonderful Site as it is a road map for all Carers since it was a life saver for me as all Carers genuinely do their best to help.
Johnjoe, unfortunately, sleep deprivation and I are already good friends. At this time, I have no help and trying to manage on my own. My father died with his first and only heart attack at 52 and I thought it was the cruelest thing that could happen. I now see that it was truly a blessed way to go. Thank you for your reply.
I've been managing the care for my 95 year-old father for 10 years. He has both Parkinsonism and dementia. I have learned to be a keen observer of his cognitive functioning as it provides clues to his general health and well-being. For him, any significant change in cognitive function has always been due to an underlying health problem such as a UTI, anemia, other metabolic imbalances, infected bedsores, hypertensive episodes, etc. My dad has great insurance which covers the cost of an ambulance so I regularly send him to ER to get him quick attention. Because of his age and underlying conditions, they always admit him. So far, they've always been able to diagnose, treat, give him some physical therapy, and send him home much improved. I pray you will find answers and some successful intervention quickly.
Pandarose, my heart so aches for you, What happened to him and to you is awful. First, you must get some help. If you don't I fear you won't be able to be there for him like you want to be. Understand that most of us watched our lo decline slowly. It's been 6 years and he isn't in your husband's state yet. We had some really good times in those 6 years, I am now getting discouraged, but this is not about me. You need to know that you need also to talk to a professional because of what you have gone through and are still. It was too much of a shock and it is something like PTSD. At the very least talk to someone close to you and YOU MUST GET HELP WITH HIM. I agree with checking him for illness and/or medicine problems. Do you have access to a neurologist? Please find one if your doctor does not have good answers. Please keep us informed of how you are making out!
Greatgrandma82, thank you so much. I took him to his doctor Monday and asked him to check for a UTI and he also checked his thyroid. He does have a UTI and was placed on antibiotics. Also, he has another CT scan scheduled for this Friday. I’m so anxious to see what changes have taken place. The changes in him have just seemed to compound weekly. A few months ago he sat with a pistol hiding behind a file cabinet all night, waiting for me to walk through the door so he could “shoot at my feet” because he was angry at “that woman that comes here.” He thinks there are 3 of me and doesn’t recognize any of the “3” being his wife. Today, he put our dog in the backseat of our Jeep in the middle of the day in 90 degree heat with the windows up. Luckily, he told me a few minutes later (in fragmented words that I pieced together) that the dog was in the car waiting. I have to hide my purse and my keys from him, and now I have to keep all doors locked on the vehicles to protect my dog. Ive had to lock up everything including my scissors... he cut up two new pairs of pajama bottoms 2 weeks ago. Last night he said he saw his mother (passed) standing upstairs on the landing. Today and tonight he’s done nothing but walk the floor and talk incoherently. He doesn’t have a neurologist, but he does have a good doctor that’s treated and controlled severe hallucinations and many other issues and sees him monthly. I was given a number yesterday to call for advice and to have someone come to my home to evaluate him. I know I need help and as I said earlier, I wasn’t prepared for the fast decline. I’m mentally and physically exhausted, but if I could just get some answers it would help me a lot. Everyone here has been so kind and wonderful and I’m so thankful I found this place and these great, knowledgable people. Thank all of you for your help.
Hi Pandarose. I'm so sorry you are going through this with your husband. Please be safe. Please buy a safe to lock up firearms or rid of them for the time being. (Family safe outside the home?) Our counselor (family counseling LCSW) says in order to take care of your LO, "oxygen mask on you first"- Like on a flight, the stuartess will explain to put it on you before your loved one so that you can help them. That saying sat heavy with me in caring for mom. I'm not one to put myself first, honestly- not when it comes to caring for my family. Mom's neurologist said diagnosis is very hard to be definitive of when it comes to neurological changes. I don't mean to scare you. You need help. My mother experienced what you are experiencing now within a short period of time. Our biggest hurdle was having a possible diagnosis put on record. We urged to have something on record with all the behavioral changes happening so quickly so that we could have a direction rather than UTIs with antibiotics. The reason why is, mom's stages were so close together and I expected the next phase and we needed help. We've done countless hours/days of research listing symptoms. There are stages in every type of dementia but no real time frame in each. Take notes. Journal your husband's experiences so you can share them with your medical team. You need a team of doctors when it comes to neurological changes. Hospice will provide help given the rapid progression but will not without a diagnosis. Mom was on chemotherapy for a blood disorder (polycethemia) which threw off her labs on white blood cell counts. Her oncologist compared it to other labs which equated to labs for UTI so they ran cultures instead and it showed up negative. It is common to think UTIs because of sudden mood changes rather than back pain or constant urine breaks with little output. Another friend here mentioned Lewy Body dementia which was our "possible" diagnosis because of the rapid decline. We were working with her neurologist to try to figure out what it might be. He explained we may never know because a lot of tests to confirm could only be run post-mortem. The rapid decline most definitely resembled Lewy Body dementia. Our experience was harrowing as mom was homicidal & suicidal 6 months prior but still walking and talking- functioning. Safety was a concern too with her wandering at 2:30 in the morning with wallet in hand and lots of cash to "feed the homeless". We installed a confounding lock on the front door and installed security cameras because she was quiet when wanting to wander. My husband slept in the living room to watch the front door until we installed that. Those with dementia cannot open it when they are in that state. Anti-anxiety meds and sleep medications (i.e. Roserem- melatonin based sleep aid) helped with the paranoia because mom would be up over 24 hours straight. Hallucinations were constant. Mom had petite mal seizures (aka mini-strokes) for years with pinhole vascular changes but that was not it. Medication helped with that to stay at bay but her neurologist suspected Creutzfeldt Jacob disease (aka CJD) which mimics Lewy Body but at a more rapid pace. Please work closely with her primary care doctor and neurologist. Ask for hospice to step in. I've done extensive research on every type of dementia out there. You just have to ask the right questions. Is it reversible? We tried everything. Changing meds, extra hydration, labs after labs before hospice stepped in. I don't know if there was a way to do it differently but I did learn, throughout it all, we found the most support within this forum and working closely with her team of doctors (geriatrician, psychiatrist, counselor, neurologist, and supportive staff). I wish you well. Please ask for help as much as you can and share your experience with your team. It'll help you on tremendous levels. God bless and be safe.
Two years ago, in a discussion with our children, we all shared concerns about my husbands mild but worrisome symptoms being lethargic, trailing off conversation, etc. At a routine check-up with his cardiologist, I had scribbled some phrases - sloppy at best - and impulsively handed the paper to the receptionist to pass on to the doctor before the visit. When she entered the room she seemed like normal but asked him some very explicit questions and waited for answers. He was great on all his vitals, EKG, etc. Then she wrote a referral for a neuro work-up. A brain tumor was found, which we never would have expected. There had been no pain, which was astounding to the doctor. No vision problems, either. So, in the end we realized that some seniors don't feel or acknowledge some symptoms and don't complain about things that have come upon them gradually and they have learned to tolerate. The tumor was benign and he snapped right out of it after all the medications wore off. He amazed everyone. He is 80. My point, instead of watching, make a list of symptoms and see the doctor. Don't be reassured it is old age. You didn't mention any investigation, which is why I give this detail. We weren't prepared for this behavior but began to accept it, until I realized that his medications and symptoms needed to be evaluated by a doctor. The MRI was done, and that told the story. LATER: Pandarose, I'm so sorry I didn't notice beyond your question (In bold print) and just went blathering on. Some of my comments were unnecessary since reading the whole string. If you only gain some encouragement from all this, then that's good. Do you have access to Area Agency on Aging benefits? There is a respite program. Otherwise, they may know of a small facility where you could place him for a couple of days while you get some hopefully peaceful sleep. This may upset him, but he would receive care and be safe. m
Rocketcat, he is no better. His hallucinations have just resurfaced and he continues to get a little physically weaker. I can’t take my eyes off him because he puts things in his mouth and tries to eat things that are not food. I made homemade chicken curry for him last night and had to watch every bite he ate and encourage him to swallow because he was pocketing it. He doesn’t do this with all foods. He also has mentioned wanting to go home where his mother (died when he was 12) and brother (died two years ago with dementia) are. He continues to get up all night long and nap during the day. His doctor has had home health send a nurse, a speech therapist, and a physical therapist out in the past three weeks. The nurse is a psych nurse and she’s recommended his doctor give him a neuro consult and make some med changes. He goes back next week so I’ll discuss it with him then. Thank you for thinking of me.
Panda rose if he hasn’t improved and has stopped eating I think I would call 911. If he’s not drinking he could be dehydrated which symptoms appear like uti dilerium.
I just wanted to let everyone know what has happened since my last post. PET scan of his brain was done last Wednesday and I had follow up with neurologist Friday. She said the scans were worse than the worst, late stage Alzheimer's scans and that the report had not been written because of how advanced it was. Said they would have to get really creative to write the report and was amazed he hadn’t been showing severe symptoms years ago. She said the very back of the brain and a few small deep parts of the brain was all that was functioning. She told me he needed to be on hospice now and got it ordered before I left. She said he wouldn’t live six months because of the fast progression. Hospice came Saturday and admitted him, ordered supplies and new meds. I felt like I was watching a movie and I wasn’t the one hearing and responding to this. I managed to get back to my car before falling to pieces. Social Worker is getting him set up with VA. She said they would pay for nursing home if it got so bad I couldn’t take care of him at home and I’m praying that doesn’t ever happen.
Pandarose, I'm so sorry. I know hearing this news about your hubby has to be heartbreaking. Hopefully the hospice nurses can help you keep him as comfortable as possible. My heart and prayers are with you and hubby as you walk through this journey.
May God grant you strength and peace for this journey.
I am so sorry that you and hubby are going through this but I can't help but believe that you and your husband are very blessed that this is happening so quickly.
Pandarose, I know we have crossed paths in different parts of the discussion forum. I'm so sorry to hear of these dramatic developments.
I too just put my dad on Hospice December 13. So far the Hospice experience is even more head-spinning than everything I've dealt with for the past nine years. Nothing has prepared me for the whipsaw effect of all that is happening with my dad and his daily care needs.
So far I've learned two important things I can share to help you. 1) One day I thought he had only a matter of days, and the next day he was out of bed for the first time in about 10 days like it was no big deal. I was equally shocked by that turn of events. The Hospice nurses tell me that it isn't uncommon to see a rally after the medications take effect, in my dad's case, Methadone and Oxycodone. It's easy to get attached to the good days and hope that they'll continue for a while but it will likely be followed by a very bad day. 2) A friend who is a former Hospice nurse told me not to be shy and call whenever I have any concern, so I have and they're very responsive. As an example, I called because he's not drinking so his lips are cracking and painful. They brought out moist mouth swabs and lip balm. Not only is that the right response to help your husband with anything at all, but it will give you some peace as well. I've found that they also know to calm and assure the caller.
I'll be keeping you in my thoughts during this sad and difficult time. Blessings.
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He started with memory problems, paranoia and being suspicious of everyone. These last two months, especially August, have been like falling through a rabbit hole. Many days he can’t feed, dress, bathe himself or understand the simplest thing I ask him to do. I have an appointment Monday for him and I’m going to see if his doctor will admit him for tests, because he’d never stand for them on an outpatient basis. He’s not been officially diagnosed with dementia.
Thank you for your help.
I’m here 24 hours a day with him and wouldn’t have it any other way, but sometimes I need someone to talk to who understands this horrible monster that’s destroying people’s lives. Thank you again Dorian.
When my mom had an MRI her doc told us that it "lit up like a Christmas tree" and sent us off to a neurologist who treated her aggressively with stroke prevention in mind. No one ever explained that all those mini infarcts could cause cumulative damage, like most of the population I had never heard of vascular dementia until I started searching the web trying to figure out what was happening to my mother, who was fine until she suddenly wasn't. Because her doctor left his practice my mom fell through the cracks in the system and was never diagnosed, but you have the opportunity to keep pressing your doctors for an explanation. Sometimes you need to channel your inner xena warrior princess to get what you need. And read read read everything you can about micro infarcts.
It was very upsetting and very frustrating. All I could do was try to read her eyes to see if she could comprehend what I was saying to her. We kept her in her normal routine and just did the best we could.
Dad's brain MRI showed advance white matter lesions, kinda sorta like a stroke in slow motion. His small vessels in the brain rupture intermittently, doing irreparable damage to nerve connections in white matter. It makes strange silent type stroke symptoms. He enunciates completely normal, yet lives in a different world that includes extreme paranoia.
Hard to believe just three months ago he was driving and walking and shopping all day without a cane. Now he needs a walker or wheelchair.
It is interesting to hear other fast track stories. I wish you comfort with kindred people here. Take care of yourself.
As soon as he realized his memory problem was going to get worse, and his doctor had advised him also, he took care of all legal issues. I’m so thankful to God that he did. I sure would not want to have to worry about those now with all the other things I’m trying to manage.
speach, and leading to organ failure towards the end. UTI's are lethal and a Nurse told me Tia's leave a mark as each shorten the life of the Sufferer. Try to organise Carers to do day and night shifts if You have the means to do so as You could never manage on Your own. I did Care for my late Mother for two years and ten months with out any break but It is dreadful tough on Your own. It's the sleep deprivation that wears the Carer down. Keep in touch with this wonderful Site as it is a road map for all Carers since it was a life saver for me as all Carers genuinely do their best to help.
The changes in him have just seemed to compound weekly. A few months ago he sat with a pistol hiding behind a file cabinet all night, waiting for me to walk through the door so he could “shoot at my feet” because he was angry at “that woman that comes here.” He thinks there are 3 of me and doesn’t recognize any of the “3” being his wife. Today, he put our dog in the backseat of our Jeep in the middle of the day in 90 degree heat with the windows up. Luckily, he told me a few minutes later (in fragmented words that I pieced together) that the dog was in the car waiting. I have to hide my purse and my keys from him, and now I have to keep all doors locked on the vehicles to protect my dog. Ive had to lock up everything including my scissors... he cut up two new pairs of pajama bottoms 2 weeks ago. Last night he said he saw his mother (passed) standing upstairs on the landing. Today and tonight he’s done nothing but walk the floor and talk incoherently.
He doesn’t have a neurologist, but he does have a good doctor that’s treated and controlled severe hallucinations and many other issues and sees him monthly.
I was given a number yesterday to call for advice and to have someone come to my home to evaluate him. I know I need help and as I said earlier, I wasn’t prepared for the fast decline. I’m mentally and physically exhausted, but if I could just get some answers it would help me a lot. Everyone here has been so kind and wonderful and I’m so thankful I found this place and these great, knowledgable people. Thank all of you for your help.
LATER: Pandarose, I'm so sorry I didn't notice beyond your question (In bold print) and just went blathering on. Some of my comments were unnecessary since reading the whole string. If you only gain some encouragement from all this, then that's good. Do you have access to Area Agency on Aging benefits? There is a respite program. Otherwise, they may know of a small facility where you could place him for a couple of days while you get some hopefully peaceful sleep. This may upset him, but he would receive care and be safe. m
His doctor has had home health send a nurse, a speech therapist, and a physical therapist out in the past three weeks. The nurse is a psych nurse and she’s recommended his doctor give him a neuro consult and make some med changes. He goes back next week so I’ll discuss it with him then.
Thank you for thinking of me.
I am so sorry that you and hubby are going through this but I can't help but believe that you and your husband are very blessed that this is happening so quickly.
Hugs!
I too just put my dad on Hospice December 13. So far the Hospice experience is even more head-spinning than everything I've dealt with for the past nine years. Nothing has prepared me for the whipsaw effect of all that is happening with my dad and his daily care needs.
So far I've learned two important things I can share to help you. 1) One day I thought he had only a matter of days, and the next day he was out of bed for the first time in about 10 days like it was no big deal. I was equally shocked by that turn of events. The Hospice nurses tell me that it isn't uncommon to see a rally after the medications take effect, in my dad's case, Methadone and Oxycodone. It's easy to get attached to the good days and hope that they'll continue for a while but it will likely be followed by a very bad day. 2) A friend who is a former Hospice nurse told me not to be shy and call whenever I have any concern, so I have and they're very responsive. As an example, I called because he's not drinking so his lips are cracking and painful. They brought out moist mouth swabs and lip balm. Not only is that the right response to help your husband with anything at all, but it will give you some peace as well. I've found that they also know to calm and assure the caller.
I'll be keeping you in my thoughts during this sad and difficult time. Blessings.