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Hi. I am wondering if anyone has dealt with this before. My dad died in August of this year and he suffered from LBD. My mother had a very hard time as his caregiver. My dad was 86 and my mom is 81... he died at home. My mom is having a tough time dealing with my dad’s absence and suddenly is showing signs of dementia. She asks me every night where my dad is. She was there when he died... she was there when we buried him... he was a veteran and the flag sits in a case in the house yet she still asks. Could she suddenly have dementia? Is this part of loss? I had her get an MRI done and it showed some shrinkage but doesn’t everyone’s brain shrink a little with age? Why is she only forgetting about my dad's death? Could this be a way of coping? How will I go through this again if it is dementia....

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Your mother might still be experiencing some of the shock of a spouse's death. For a few months after my own husband died, I doubted my sanity and ability to cope with the world, but I did eventually return to normal. (at least to my own normal). At least some of your mother's confusion may fade over time.
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I'm very sorry about your father.

My sweet mother in law was thrown completely out of loop when her husband died. She was 81, he was 89 . Besides bad knees he was in good health, still mowing 2 acres, driving and cooking, she didn't have to care for him at all. She knew he died, but couldn't remember where he died! She was confused on a lot of things. It was literally like parts of her memory were completely wiped away! It REALLY concerned my husband and I, but after a few months she was fine, albeit never remembering key parts of the last few weeks surrounding his death. She does suffer from anxiety issues now.
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in my case, when my dad died it seemed my mom started getting dementia. She has other issues as others here may know. But as time went on, it seemed she was not forgetful as I had once feared. In her Grief Share class they told her depression from losing a spouse can exacerbate dementia type symptoms.

I obviously dont know if that is the case here, and I think others have given you good advice to rule out other potential causes, but I do think these symptoms can be part of grief and mourning.
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So sorry for your loss.
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So very sorry for your situation. When older folks experience trauma and stress, the onset of memory lapses and confusion are common. They might be temporary - time will tell. My mom experienced this when my dad suffered a sudden, unexpected healthcare crisis (heart attack, bypass surgery). Her issues resolved. Two years later, however, she clearly demonstrated signs of dementia not related to stress factors. She died before my dad - following her death, my dad became very depressed and suffered healthcare issues within a couple weeks (severe pneumonia, blocked colon/colon cancer, cellulitis, gout - requiring a total of several months hospitalization/re-hab in skilled nursing facilities). He lived another year after that long period and eventually confessed that he had no memory of those first few traumatizing months after my mom’s death. He regained his mental competency once he was home and things settled down.

One of the issues I confronted in his care involved the first facility my dad was transported to for re-hab after colon cancer surgery. It had been 8 weeks since my mother’s death, five weeks after a severe bout of pneumonia and two weeks after surgery (which required a stay in ICU after complications). The staff at the re-hab facility did a cognitive functioning assessment upon his arrival, diagnosing him with dementia. Among the questions they asked him were, “do you know where you are, what the day is, date”, etc - all of which were irrelevant to an 87 year old man who’d just been put through the wringer, so to speak. I challenged their conclusion. Within a few days of my dad’s objections to getting out of bed for re-hab at that highly-rated facility (because of severe pain), he was diagnosed with gout and cellulitis. The nurses and aides actually chastised and belittled him for demanding “put me back in bed”, refusing to acknowledge his severe pain. The gout diagnosis had not been made at that point. He was sent back to the hospital for a couple more weeks, where he developed bed sores after weeks of being weak and bed-bound. The wonderful hospitalist who’d recommended hospice, soon determined my dad was over-medicated and started weaning him from several meds. My dad suddenly became more alert and aware. His mental fog started to dissipate and once aware he had a bed sore, he immediately took responsibility for frequently changing his position.

He was discharged to re-hab once again, to a different facility at my request. Their policy was to wait at least a week or longer to do a cognitive assessment, recognizing the a period of acclimation to new surroundings and routines was needed. An immediate assessment would be skewed, they told me, as confusion and temporary memory loss resulting from episodes of dramatic change, stress, health, and trauma is quite common among the elderly.
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This same thing happened to my mother. After her husband died, she went into a deep depression which morphed into dementia ,and she never got better. Very sad. I think his death definitely triggered her decline.
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Looking4Help, wondering how you are doing. I know you will meet with your Mom's doctor to discuss her scans this week but think you didn't tell us what day. Want you to know we are hoping for the best for you and hoping you will update us when you know more.
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My mom did the same, only her questioning 'where dad was' turned out to be her questioning if he was in heaven or what had happened to his soul. This was a part of her grief. I too thought it might be early onset dementia, as she would also do or say some other things that were alarming at times. A year and half later she no longer asks. So sorry to hear about your loss. I'm glad you are here for support. Hugs to you!
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I've seen it go both ways. You may need to give it a little time.

My boyfriend's mom had some dementia issues. Little things, but still able to communicate. Just a few things that made you aware her mind was not always clear. Her oldest son died unexpectedly and she totally separated from reality. He died in March. Toward then end of the year, she couldn't remember how to walk. By December, she recognized boyfriend's face, but couldn't recall how she knew him. She passed on Christmas Eve. We never thought it would progress that quickly. She was in her 80's..

On the other hand, my brother passed unexpectedly in July 2020. My mom is 96 and pretty sharp mentally. She didn't recognize my sister who she sees on a regular basis. The neighbor happened to be here when mom asked who the lady was in her living room. Then mom said, oh yeah, I know that. She seemed a little foggy for a couple of weeks after the funeral. Fast forward to November, and she's back to her old self pretty much. A little more teary about things, but recall has returned.

Perhaps it is a way of blocking some pain. Be patient and try to get her mind busy with things she enjoys (or used to enjoy prior to being a full time caregiver). She has lost her husband and her daily routine of caring for him. The caregiver role creates it's own havoc on the brain because you are constantly starting and stopping your thoughts midstream. I find myself dealing with 'feeling lost or what was I doing' all day long as I manage the 24.7 care for my mom.
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I am sorry for all you have been going through these past few months. My father died Sept. 27 at the age of 82. He was my 81-year old mother’s caregiver. She has Alzheimer’s. As an only child that care has not been deposited into my lap. She was there for his lengthy hospital stay, his two weeks in hospice, the funeral with military honors and continues to ask where he is daily. I can’t properly grieve and mourn his loss having to relive it daily for her. So, with much trepidation, I have begun to tell her he is traveling with his sister (which he use to do frequently). She is fine with that answer and my days are calmer. This was done for my own self-compassion. We will be getting in-home care for respite for my husband and me and she will eventually end up in a nursing home when we can no longer take care of her properly. The takeaway from this is that you have to take care of yourself first. It’s the old oxygen mask in the plane scenario. My heart goes out to you. Please take care of your own mental health.❤️
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This is not a sign of loss. What I would do is check around for some in home nursing care for your mother. I went through the same thing with my parents . My father had Dementia and my mother had a hard time taking care of him, so we hired an in-home nurse to help. Not only did they take care of him during the day but she also did some light housework.
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My Mother passed on 9-16-20 at age 91. My Dad knew it, saw her at funeral, but then would continue to ask where she was. I know that in my own grief My mind was cloudy and scattered, so I can only imagine how his felt. He had good days/bad days. Five weeks to the day my mom died, 10-21-20 he died. I think he willed himself to go. We had a wonderful day that day, but late that night, he was gone.
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Marcia732 Nov 2020
That is very hard. My sincere sympathy to you and your family.
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She should be evaluated by a neurologist. MRI showing brain volume loss is one sign of Alzheimer's and/or other forms of dementia.

Same thing happened with my parents, although they were in their 90's. Mom's memory and behavior declined over a period of about 15 years prior to Dad's passing. She had a minor stroke at age 75 and that's when the decline started.

Her short term memory was completely missing by the time Dad passed, while she was in the room. She attended his funeral. She has his military flag hanging in plain view. She sleeps in their queen bed alone. But she continually asks where Dad is. She has formed long term memories, so could perform repetitious tasks learned years ago. But she could not plan anything, could not prepare a meal, can not attend to personal hygiene, or follow written directions without prompting and supervision...Dad kind of supervised her and propped her up until he died. But afterwards, the full extent of her mental deficits was very apparent. We moved her to memory care.
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Quite often couples pass away shortly after one another. Mom had passed away 5 years earlier, then her dog & Dad both declined about the same time. The dog, that was their empty nest child ? Once the dog passed away, the decline Dad was experiencing, I knew he wasn't far behind both of them. As caregiver, my goal was that the dog get to 20 yo & Dad to 100 yo. The dog 18+, Dad 96+ yo. Both seemed to know when. They both seemed to stay up later and nap more often. I think they were trying to get the most out of every day ? I became somewhat nocturnal myself for 2 years and it's a cycle I haven't been able to break nearly 3 years later.

From what I've both experienced & observed, society takes the most productive & best years of anyone's life, forces them out and then it's whether one has enough as a reserve & how long they can stand the back end of their life. Often eating more pills than food.
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I am sorry for the loss of your father and what is to come with your mother.  She was probably on auto-pilot taking care of him and therefore you just didn't notice that she was having some mental decline as well.  Experiencing a traumatic loss, like the loss of her husband and change in her every day routine of taking care of him could definitely exacerbate her symptoms.  I'm sorry.  I hope you have some idea of care for her and help from other family members to navigate these rough waters.

Start with a doctor visit for her ...it could be a number of issues.
Take care.
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My father also had a very long and difficult LBD. After he passed, the nurse who runs my dementia group warned that now I would notice my mother’s deficits. Recently diagnosed with dementia, she is having delusions that make me realize she’s been having them since before he died two years ago. I know exactly how you feel. I haven’t recovered from my fathers dementia and here we again. I am an only child living in a different state with two more years before I can retire and negotiating a health issue of my own. Not to mention COVID. I am so sorry for anyone who has to experience this even once. Twice just seems too cruel. Find a good in person support group once the pandemic is over. It will save your life.
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It took me months to begin functioning anything like normally after my mother's death, and I was fifty-something and hadn't been married to her for decades.

I think you're right, that this is - not so much a way of coping, because that almost sounds like there's a choice - but your mother's emotions and sense of self being in complete free-fall. She must feel so disoriented, after years of strain and then total absence.

If, just as a suggested example, instead of directly answering your mother's question about where your father is, you were to take her hand and ask her what she's thinking, what might she say?
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I am so sorry for the loss of your father, and hope your mom will improve in her memory. I had a similar situation-mom was suffering from memory loss (we all knew it but dad did not address it before he died), father passed away 1 day short of their 60th anniversary (at home also with liver cancer), I took her in to have her blood pressure medicine prescribed (she wasn't on it but had high blood pressure), and the PA requested blood analysis showing she had severe anemia. Long story short, she had esophageal cancer that was bleeding! and it was metastisized to the liver already. So she had also been sick while dad was sick but wasn't showing symptoms. She rarely asks about dad, and has never asked to see his grave after the funeral. She does have pictures out, so that is good. And now she was admitted this past week to hospice and a memory care facility with dementia (Alzheimer's) and the liver cancer getting worse. But for 2 years she lived with me and could care for herself even with the memory loss and cancer. So, I am having the guilt that goes with having her in a facility instead of passing away at home-but with the memory and the disease it is one too much. She doesn't remember she has cancer, says the memory loss was sudden (it wasn't but maybe got worse with the stress). At home, she wants to get up to use the restroom, then can't get up to get back to bed and has a panic attack and it was too dangerous if she fell, etc.
So, make sure mom gets a good medical workup, check for UTI (she has had several also), and figure out a set answer for mom so she doesn't get upset all over again but is truthful. It is sad when our mother's aren't the same as all of our lives, and I really think dementia is the saddest thing. But also, for mom, it is a blessing since then she doesn't dwell on the cancer. Use the caregiver resources your community offers-it helps a little to know you aren't the only one. Here we have the Alzheimer's Project, the Alzheimer's Association, Elder Care Services, and yes, check with hospice about bereavement assistance, since you also are still grieving. See if there is a care facility mom can be in to be sure you can provide the best care without sacrificing the care of your daughter. Good luck with mom, and she is lucky to have a caring daughter.
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So sorry for your loss. In short Yes, your mom could be showing this sign after the loss of your dad, but you need to look at how things were prior to your dad's passing with her memory. Was this something that you noticed before that she was having difficulties? Your dad's death is still quite new for your mom. It could be the way that she is coping. Keep your eye on mom, try to get her to her PCP doctor and if possible into some type of support system to help her deal with the loss.
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I'm so sorry for your loss of your father. And, and your mother certainly feels her husband's loss.

It's true that depression among older adults can mimic dementia, but it's more the short term memory vs. longer term memory that's affected.

My guess is that your parents worked well together in managing care for one another, and that your father could fill in for your mother when her memory began to wane, but that it became challenging at a certain point.

I suspect she has some form of dementia, likely Alzheimer's. But, only an eval. to rule out other causes can confirm. It seems sudden because you're seeing her now without your father physically present. I saw this so often among our older couples seeking home care services.

I know this is not what you needed after your father's death. But I hope you can connect with some support and don't lose site of some options that can be helpful in terms of care for your mother--day care, respite care, and just as importantly your circles of support.
Much luck❣️
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Many things can cause your mother's confusion: brain trauma (as in stroke), dementia, grief, infections and imbalance in electrolytes. Please have her evaluated by her primary care doctor to make sure that all possible causes are checked out. Also, 75% of people 75 years old and older have some form of dementia so the older your mom gets the more likely she will have some dementia.

As for how to cope, every person is an individual and your dad's LBD may not be your mom's type (usually Alzheimer's is most common). You address the needs she has at this moment in her life. Please consider having a group of people involved in caring for your mom, so you can make sure to take time to care for yourself as well.
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So very sorry for the loss of your dad. Wishing you all the best with your mom. That’s so sad.
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Dear looking4help. I responded earlier but after re-reading your original post, some of your statements I missed concern me. There's a whole lot of comments made below with the intent to maybe help explain your mom's behavior and to somehow offer you comfort and even hope. I don't know if any of them struck a chord with you or not. I hope so. You have a right to all your emotions, your denial of the obvious, your mistrust of drs etc., but what concerns me are your statements of “How will I go through this again”, “another person with Dementia might just be the end of me.” and “I have a young daughter and she needs her mother but I can’t do it all.” Your first responsibility and your only obligation is to be the best mom you can be to your daughter. That's not likely in your present state of mind. YOU come first!! Seek help for yourself. If you have a church talk to your pastor about your feelings. Call your local Area on Aging (every state has at least one) to get suggestions on caring for your mom. Call the Alzheimer's Assn 24 hr hotline (800-272-3900) to see if there are any dementia support groups in your area (during covid they're almost all virtual but there are some out there.). I'm sure there are many professional counselors in the Anaheim area, you might call one who is trained in psychotherapy or CBT. If you're not in the best of health you can't very well care for your daughter or your mom. So seek help and know your caring limits. Know when to say “enough is enough” (Is it now??). At that point you look for a care facility for mom.
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Hopefully the doctor gave her a full checkup, blood tests, urine test, etc before the MRI. There is a mini-exam they can do to test for cognitive decline, but they should also rule out other causes for the decline as there are treatable conditions that mimic dementia. If she's on medication, has she been taking it regularly? My mother would forget if she took them, which can result in missing doses or taking too many. Hearing loss and loss of socialization can also sometimes contribute. If she lives alone, until there's a definitive Dx, she should have someone there, whether it is you temporarily or someone you can hire. Alternative is take her in temporarily. If she does have dementia, she shouldn't be alone.

That said, if all other tests are negative, it is possible that she remained very focused on the tasks needed daily to care for your father (sympathies for your loss!) and perhaps seemed okay. Once that went away, she may have lost that focus. Many times people can fool doctors or others who don't see them on a regular basis - they can pull up their socks for long enough to seem to be okay. They can have a "routine", but that gets broken when he's no longer the center of that routine. Doctors can miss or dismiss the signs. BUT, that doesn't mean she has dementia. It may be the compilation of stress during your dad's decline, grief, sense of loss. If there was hospice involved with your dad, they should have reached out to your mother regarding counseling and/or religious support. My mother was just approved and within days a clergy member contacted me. In your case, perhaps that wasn't passed on to you - if your parents lived alone, they likely only contacted your mother and she might not have thought to tell you. If there was hospice and you know what agency, contact them to see if they can set up something for your mother.

Hoping that the docs find something else causing her confusion. Terminal medical issues are bad enough, but the various forms of dementia are just so difficult and heart-breaking. If it does end up being some form of dementia, be sure to have some kind of support for yourself. Raising a child and trying to care for an adult who will need more and more support would be overwhelming! I found it hard enough with grown children (and mostly useless brothers.) Thankfully mom had enough assets and proceeds from the sale of her condo that I found a very nice MC place for her near to where I live and have been able to manage her finances and other needs, while visiting often (b4 virus.)

Wherever this new journey takes you, know you have us thinking and hoping the best for you and that everything will eventually work out okay.

(As for why, the "experts" don't even know why some get a form of dementia while others don't. It might seem odd that both parents end up with some form of this, but there are others on the forum who have had to deal with it in both parents. Although I don't think there was any real testing done on my dad, he had a lot of the signs. I knew nothing about dementia before my mother started down that path, but it was at least 8 years after he passed, and he was in NH for about 2 years prior to that. In her case, no real testing done, but I suspect vascular, as she has been on BP meds for as long as I can remember. I think this might pre-dispose one to vascular dementia - it's even possible she might have had some mini-strokes before I realized she was having issues. She lived alone, so some "signs" were missed as we weren't there all the time. She's just finishing year 4 at MC, hit 97 in Aug and had a stroke early Oct. As someone else mentioned, this type often has "steps" down in memory. First for her was forgetting her condo 9 months after moving to MC, and becoming focused on her mother and previous home. Comments made about a younger sister allows me to peg her living in memory around 42-45 years ago.)
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Hello Lookin, So sorry for the loss of your dad. My thoughts and prayers are with you during this difficult time. People grieve in different ways. When my father died, my mother seemed to be in left field somewhere. They were married almost 60 years. My mother would ask where my dad was frequently. Finally she accepted his death and was not in denial any longer. At that time she not diagnosed with dementia and was quite healthy. We all took my dads death very hard and I think we were all off a bit for that matter. Time usually heals but if your mother continues to decline I would have her checked out as JoAnne advised. I am sorry you are going through all of this with your mother. You have a lot on your plate. Please take care of yourself and give yourself time to grieve as well. May God give you strength and peace as you move on to anther chapter in your life.
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My condolences on the loss of your dad, and to some extent, the loss of the person your mum was. Your mum's change in behaviour could be part of loss, it could be a mixture of both, she may have a UTI. In fact it can't really be just dementia or a UTI as she is definitely going through grief. A test for a UTI and a though neuropsych evaluation will likely sort that out.

"How will I go through this again if it is dementia...."

This question is the one that concerns me most. Obviously you need a professional opinion/diagnosis about your mum. Then you have some decisions
make. If it is grief only, likely she will heal in time, but may never be quite the same again and will, due to age, decline and need more and more help. If it is dementia, exacerbated by grief then you have to consider the nature of the care and support your mum does and will need in future. In either case, she will need more and more help. If it is a UTI there is an easy solution

Perhaps, for yourself, a few counselling sessions would help you work through this. You need to figure out what you can and can't do for your mum, and what you need to do for yourself.

Again my sympathies on your double loss. (((((((hugs))))))
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I would go with that no one noticed Moms slight decline because of Dad or she covered it up very well. You may have seen it as an age decline. Then Dad died and she was free to let go?

I would take her for a good physical. Bloodwork and labs. Get a referral to a neurogist. This way you rule out the physical stuff. Is she on heart meds. Water pills? This will deplete your potassium. My Aunt and Mom had problems with their thyroids. Diabetes will cause problems.
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disgustedtoo Nov 2020
I also mentioned potassium in a reply to someone else. Before dementia came into play, my mother was in a very confused state. I had to skip work that day and take her to the ER. She was drinking too many fluids and washed her system out. Low potassium can, among other things, show up as confusion. Once treated, she was fine (well, at least back to normal, for her!)

Any number of things could be off in her system or it could be a UTI. Rule those out first.
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Listen, both of my parents wound up with non-diabetic neuropathy in their legs & feet. BOTH of them, for no apparent reason, with no cure, no real treatment, and chronic pain that doesn't let up. My mother is almost 94 and wheelchair bound now as a result of the neuropathy. Questioning 'why' things happen the way they do doesn't result in an answer or a cure...........just more questions and more refusal to accept what is.

If your mother is diagnosed with dementia, it won't be due to a vitamin deficiency or pure grief. It will be due to medical testing of various kinds, and not just MRIs, but tests like MoCa which is cognitive and asks questions of her. If she's unable to work everyday appliances like phones, microwaves, tv remotes..........that's a sign of cognitive impairment. After a traumatic incident like a death, of course everyone is going to be MORE off than they usually are. But not to the point where they keep asking the same question over and over again, and not realizing their husband has passed away. At least I wouldn't think so.

If your mother is diagnosed with dementia, then you will decide if you want to keep her at home for the duration or if she'd be better off in a Memory Care Assisted Living. My mother lives in one of them and she's very, very well cared for by a team of people who work in 24/7 shifts. There are only 23 residents so they all get a huge amount of individualized attention. This is NOT something you must decide today or even tomorrow. Just something you can keep on the back burner of your mind for future consideration

Try to relax a bit and give your mother some grace. You've both suffered a huge loss and for that you have my deepest condolences. I lost my father in 2015, and my mother her husband of 68 years. She took the path of getting rid of ALL of this things immediately and refusing to even talk about him. Ever again. We each grieve differently; and some do not grieve at all. Nobody can really tell you exactly what your mother is going through right now; it could be a bit of dementia and a whole lot of grief combined.

But for you to start ramping up YOUR anxiety now, in addition to going through such a profound grief period, won't be helpful. Show YOURSELF some grace as well and try to just do the best you can without overthinking anything. Take things one day at a time and when your mother questions where your dad is, tell her he's visiting a relative in another state. Continually reminding her of his death will not help her in any way, especially if there IS dementia at play here. It will make her relive the trauma over and over again, you know? Just tell her whatever she needs to hear to keep her CALM!

Sending you a big hug and a prayer for peace; that everything will work out well for both you and your dear mom.
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Lookin4hlp Nov 2020
Listen, it is my nature to ask questions and there is nothing wrong with doing so. I ask questions and wonder “why” so I can look into how to avoid it happening to me or others I know. Don’t jump to conclusions or make assumptions about why people do what they do. My dad had dementia and I handled the situation as perfectly as possible... I am ready to do that again for my mother. I have not succeeded well in life by accepting and not questioning... and I THINK... not to be mistaken for OVER THINKING. Thank you for your comments.

Consider not starting off with “listen”.., it doesn’t make someone want to read on... it’s like scolding someone... makes a person feel stupid for asking.
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My mother -- already diagnosed with dementia before Dad's death but not terribly bad -- went straight downhill after he died. Within two months of his death she'd completely forgotten him in spite of having been married to him for 66 years.

With dementia -- at least in my mom's situation with vascular dementia -- she doesn't decline gradually; she does it in large downward steps, then plateaus for a while. The downward steps tend to be as a result of some trauma -- it first started after a serious illness and the loss of her beloved sister in 2014, then Dad's death in 2018, then her move to a memory care facility seven months later.

I wouldn't be surprised if your dad's death was one of those traumatizing moments that will have affected her permanently.
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If you were really focused on dad's care for a long length of time, you may likely didn't even notice that mom was slipping. Double down on the care and the CG's get a little 'demented' too.

But def check for a UTI, talk to mom, walk her through this grieving process. Making sure it's NOT a physical thing or is a physical thing will help you to know how to handle it.

I am sorry for your loss. It's like you lost both parents at once.
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disgustedtoo Nov 2020
I second the motion on checking for UTI - been there done that! It can show up as odd behavior in older people. I was skeptic until mom had her first after moving to MC - she was out of control with sun-downing, which went away after treatment. Subsequent UTIs show up as night time bed soaking. Treatment, problem goes away.

Also, yes, check all her blood and urine balances are in check. Before dementia, mom was in a confused state. I took her to ER and they diagnosed low potassium, which can cause confusion. After one night with treatment, back to her usual nasty self! In her case, she was drinking TOO much water and getting other fluids, which washes out the system. Most don't drink enough.
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