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It can happen this quickly, but other issues can cause her increased confusion. Please have her checked out by her doctor for an infection.
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texasrdr22 Aug 2020
I had a home medical company come out to check her yesterday. I had managed to get a urine specimen that morning and put it in the fridge to take it to her PCP's office to be tested. Instead, I called a company that sends a PA or NP out along with a med tech. They used the sample I had for Mom and dip tested it right there in her living room! Yep, she has a UTI. The PA gave her a shot to get the meds into her system quickly then called in an Rx for Bactrim (although we got a medication that did not have a name--only numbers and letters.) The pills are huge and I half to cut them in half for her.

After the shot, she actually seemed more aware of her surroundings. But, then night came! She again was up and down all night----once to go to the bathroom, once to try to "sell" her pillow, and other times, just because. She is awake most of the night and yelling, moaning, groaning, coughing and sometimes having a conversation. I hear her on the baby monitor I have by my bed. I don't know how to get her days vs nights straightened out. I woke her this morning to take her antibiotic and change her undergarment, then she went back to bed. She is still there at 11am.

Hopefully, after this course of antibiotics, she will be better? I think she has had a UTI for months. We have a virtual visit with her PCP scheduled for later this afternoon. It is a phone visit and not computer. It will be useless for Mom. I plan to ask about getting something to help her sleep at night.
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People with dementia have locational dysplacia and that's what happens when they move to different places. I found that out after my mother went to stay with my sister for a few weeks.
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Yes, it absolutely can. I took my father on a road trip to visit my sister, after one day he was ready to go home, we stayed for 2 weeks. On the way home he kept asking if I was taking him home. I reassured him many times that we were going home. On arrival he asked me if we were at home. He was relieved and happy to be home, but for about a month it seemed as if everyday he declined a bit more. This eventually leveled out and he had entered another level in the disease. When a person who has Alzheimer’s is moved frequently it can keep them confused. I think it’s great that your brother switches off time with you for the care of your mother but you may want to consider reducing her moves back and forth. Also don’t be surprised if she starts asking to go home when she is at home, the home she is remembering then is an earlier home in her lifetime. I had to put locks on all the gates of our fence to keep my father from trying to go “home”.
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texasrdr22 Aug 2020
I understand about the locks. My Mom's father had Alzheimer's and passed away at the age of 84. He was still physically strong but could not see or hear well. He was always grabbing his hat and heading out the door to"go to Arkansas!" I remember several times going with my Mom to pick him up after the police had found him wandering by the side of the highway. We put up a fence around his front yard and even bought him a dog so we would have an excuse for adding the fence.

It is obvious: we have to come up with a new solution for Mom's care.
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Is a trip to her doctor possible? Just to make sure nothing else is going on and adding to the confusion and decline (bad urinary tract infection, mini strokes, etc.)? Just a thought.
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texasrdr22 Aug 2020
I had her tested for a UTI and it was positive. No surprise to me. She is now on antibiotics and hopefully they will help. We have a "virtual visit" with her PCP scheduled for this afternoon. That will be an interesting experience!
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Moving a person with dementia can cause them to become more confused and decline more quickly. Or at least returning from a decline is not as fast. It may have been that she would be “off” a day or so after returning and now she may not return to her “baseline”.
I would either not move her and hire caregivers to help out or if possible you and your brother switch houses for the 2 week respite.
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My Mother had Alzheimers and I learned, right off the bat, that moving her, caused the decline go worsen. By moving her, I mean any time I took her out of the normal routine of her environment.
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texasrdr22 Aug 2020
Thank you for sharing your experience. My brother and I will be talking about how we can make this situation work for everyone, ESPECIALLY Mom.
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Yes is can one day my mother was fine the next she didn’t know who I was called me her sister. There were little signs along the way I missed. This was 3 years ago now she is totally dependent on me totally can not walk stand, she will yell help I go to see she denies it. She denies everything basically. She doesn’t know who I am but calls me by my name.
i am a good friend she says. I will tell her it’s time for bed she says she has none but she is sitting right next to it. Her memories are when she was a child up to her early 20’s. I can walk out of her room and return 5 minutes later and I am a different person. She has lived with me 30 years. So yes it can be rapid.
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texasrdr22 Aug 2020
Your story sounds painfully familiar! Mom just stares at me when I wake her with that "who the heck are you?" look on her face. The fact she has lived with you for 30 years is certainly a testament for your patience and love. Just thinking about that makes me VERY tired! Do you have outside help? If not, how do you do it alone?
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Hi,

I am in the exact same situation that you are in. I live with my mother (81 years old) and am her caretaker. She was just a little forgetful for the past year but in the recent months since I have been working from home due to the pandemic she has had an extremely rapid decline. Like your situation, she thinks I am someone else. She has called me the double or thinks I am her mother. There are times where she is perfectly fine and knows who I am and I get encouraged and by the next day it starts all over again.

We have lived in the same house for 47 years and she does not remember where the bathroom is and will ask me to take her home when she is home. The other day she was insisting that we stayed at a house in another town when we were in fact in our own home that night. She talks to me as if I were a stranger and asked me if I remember her ex husband, who is my father. She also asked me if I know her daughter's friend (my friend).

It is extremely scary because the neurologist cannot do anything for her. What she is going through is vascular dementia which is more rapid than Alzheimer's.

I am extremely scared since I will need to go back to work soon. I know how you feel and I have been speaking with a psychologist because it is extremely hard for me to see her decline like this and she has also gotten verbally abusive. I realized I needed help in learning how to deal with someone in her condition.

I wish I could tell you it would get better but it doesn't. The most important thing is for you to take care of yourself so you will be there for your mom.
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Yes. It can happen over night, but later some of the mind might come back as if nothing happen. Dementia is unpredictable, but it never it gets better. You can even see different personalities arise.
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It will be the new normal, that might change for the both of you, every day .. There are no rules of decline. Every case is different. My husband who is only 77 got up the other day and wondered about the house we live in .. Questions like , how long have we lived here? Who’s house is it ? Is it a rental? Where did the furniture come from ? It took me a long time during the last 4 years to understand that he was not pulling my leg or making jokes ..His brain is breaking and there is no chart on the speed of decline . Teepa Snow has some great videos giving insight into what is happening to them and how to manage your relationship with them ..
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sassyisie Aug 2020
You are correct in saying there are no rules of decline! My sister is 76 & no longer know me ! She has had Alzheimer’s for 8 yrs that we know of! They say a person can have dementia 3 yrs before one realizes that that person has Alzheimer’s! There is nothing else wrong with my sister !She does not take medications for anything!
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I would definitely have your Mom checked medically. It's possible that your Mom has a medical problem that can be improved by medications. Check for UTI and have her doctor do complete blood work. UTI's take a terrible toll on the elderly. Low potassium and other imbalanced can also have a negative effect. My Mom's potassium was low and when she began potassium supplements, I noticed a positive change in her memory and alertness.
Best wishes to you and your Mom.
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DianaMarshall Aug 2020
Very good advice. I am glad you mentioned this. My mom had signs of dementia and it was a urinary track infection she had undetected for 6 months. It took a toll on my family living with her just in that short time.
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She should be checked for a stroke.
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texasrdr22 Aug 2020
She has had several mini-strokes and possible has had more recently. Not sure what good it would do to check her again. We know the damage has been done previously and it would not be unusual for her to have more strokes. Treatment would be the same, right?
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It sure can. My wife is 62....2 years ago we were in Paris on vacation (she had signs of Dementia then, but was pretty much ok). Now I dress her, wash her (including cleaning of personal parts- she started wearing Depends because she keeps soiling herself) and she is incapable of carrying on a coherent conversation. I have in-home care 7 days a week. The delcine has been very fast- she is now "advanced", 18 months after the initial diagnosis. (which was "moderate" stage at the time) This disease has its own timeline and nothing is ever out of the ordinary. She was bad last summer too, but could still dress herself- even though her clothing choices were odd. Now, she often doesn't know who I am, where she is (keeps asking to "go home")

So yes. I feel for you. It would be a fascinating study of the human brain if i weren't living it. Take care of yourself.
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texasrdr22 Aug 2020
Wow! That is a rapid decline but is similar to what is happening to my 90-yr-old mother. She has not progressed to the stage of your dear wife yet. She still showers and toilets herself (with my help). I truly believe that the general anesthesia she received with her hip surgery in 2018 was the beginning of the decline for her. Unfortunately, I recognize a familiar progression in your post.

Your wife is lucky to have you.
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Yes, the decline can happen very quickly. At her stage, it may be be less disorienting if she stays in one place. Moves can be disorienting. She'll have good days and bad days. She may do illogical things. My mother tried to wash everything, including her leather shoes, and other things that shouldn't be washed. Be patient with her and don't take it personally if she can't remember your name or how to do things. Prepare for a time when she may need someone to watch over her constantly if she wanders or becomes incapable of doing things for herself. You may have to "elder proof" the house. My mother now needs total care, she cannot walk, feed herself, dress herself, shower by herself, or talk. Be sure all of her paperwork is in order (if it's not too late). You or your brother should have POA, there should be a living will (with her medical directives), a will, etc. Banks often have their own POA forms. I found that it was easier to handle everything if the accounts were joint accounts with my name on them. There may be a time when you'll need caregivers to come in and help, or she may need an assisted living facility. Be prepared for the worst, but hopefully it will not happen! You are good daughter and a hero! All the best to you.
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This happened with my 96 yr ikd Dad but he had gotten dehydrated and wasn't urinating and had to go to the ER and be Catherized. After that his decline was within a week
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texasrdr22 Aug 2020
Dehydration could be a possibility. Mom drinks very little fluids during the day. I have now started a plan where we "toast" each other with our water bottles several times a day. It helps me to drink more fluids, too. Win/Win!
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Sorry that you’re going through this. It’s really hard. This resource may help you respond to some of the things that are happening. It helped me.
https://www.agingcare.com/articles/caregiving-tips-teepa-snow-180395.htm
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texasrdr22 Aug 2020
I really enjoy and learn from Teepa Snow. How wonderful would it be to find a caregiver like her?!
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Yes, it is normal. Same with MIL.The changes happened from one day to another. There is a possibility of her coming back and forth from her previous stage.
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I'm glad you checked for a UTI. If her PCP is not currently seeing patients due to the pandemic, then he/she should be prescribing antibiotics. My MIL with advanced dementia had a rapid decline just as the pandemic hit. Because her AL/MC community would not allow her personal caregivers, we moved her out because no one would be able to monitor her and provide the supervision she needs. Well, we almost had her on hospice until her urine culture came back. Turned out she had a UTI and once the antibiotic took affect, both her awareness and physical condition improved dramatically. It didn't improve her dementia, but it was a lesson learned on just how bad a UTI can affect our elderly, and it's especially dangerous for those with dementia who can't communicate. Wishing you all the best with your mother - it's a hard place to be.
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Absolutely. My mother went from moderately confused but physically active enough to "escape" when we thought she was in the bathroom (she walked a mile and almost got to the BART station before she was found) to being unable to read, talk, or feed herself less than a month later. She left the house she'd owned for 54 years to go "home" too, to the flat where she grew up, which was a BART ride away. It's interesting what they manage to remember. Her urge to go home was powerful in the last four or five months before she became very ill.
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jacobsonbob Aug 2020
WOW! If she had caught a train, it's anyone's guess as to where she would have ended up! (However, maybe the mechanics of paying the fare, etc. would have been too much of a challenge once she got to the station.)
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Dementia sufferers take steps downward.........some can be large while others are smaller. Your mother is overly confused because, as others have said, she's in too many places to keep track of. Her brain is addled to begin with, then add in several different houses to remember and it's all too much. Wanting to 'go home' is very common with this affliction and it doesn't mean they want to go somewhere like their childhood home. It generally means they are in need of comfort of some kind and it's up to you to figure out what kind. Wandering is common, so is sleep disruptions and packing their clothing to 'go home'. I worked as a receptionist in a Memory Care ALF before the plague hit, and we had one resident who packed her bag daily, put on her coat, and waited in the hallway for her son to pick her up. No amount of telling her that wasn't happening would change her mind. So she'd sit there all day and only leave to go have lunch, then come right back to her post by the lobby doors.

There's no arguing with dementia; there's no rhyme or reason to it, and there's no coming back to a normal place from it. Sometimes I think it's harder on the family members than it is on the person suffering from the dementia! They are usually unaware of having an issue; it is WE who have to learn how to cope with them forgetting who we are, our names, and every other memory that was held dear to them during their lives. I hate dementia with every ounce of my being, and I have zero regrets that I placed my own folks in Assisted Living back in 2014. My dad passed in 2015 and my 93.5 y/o mother still lives in the ALF, but in the Memory Care wing nowadays. She's well cared for over there, and if she's up all night asking for various things, the night staff has no problem with it. She can't leave the grounds and get lost, she gets 3 hot meals a day and 3 snacks, and as much entertainment and activity as they're able to provide these days with the virus being an issue. It's truly a win-win situation for EVERYONE. The elder is NOT the only one to take into consideration here. Everybody matters, and everyone deserves a good quality of life; try to remember that moving forward.

Wishing you the best of luck.
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Don't feel guilt about considering MC for her. You're caring for her now, and placement is also you caring for her. In fact, she'll be getting better physical care than you can give, and with that you'll find some peace and can concentrate on just providing the love.

My dad would never have put Mom in a MC, because he felt it was his duty to care for her. He died first, though, and my mother's health improved significantly since I moved her to MC. One person cannot do the work of a round-the-clock staff, no matter how much you hope you can.

Also, my mom has vascular dementia, too, and stopped talking about my dad within a month after his death in 2018. They were married 66 years, and her heart was broken. Don't blame your mom -- it might be the dementia, and it might just be easier on her heart not to talk about him.
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texasrdr22 Aug 2020
Your mom's situation sounds familiar. My Dad always planned to move Mom and himself into "step" living where you start out independent, then move to assisted if necessary, then skilled nursing or memory care should the need arise. All this care is in the same location so moving is not so traumatic. That didn't happen and Dad's dying wish was for us "to take care of your mother and let her live with you or your brother." I do agree with what you say about placing her is caring for her. I read somewhere that if you care for your loved one alone, you are doing the work of about 140 people who are on staff at the care facility!

I think my mom's memory is gone. She does not talk about the present, the past or the future. As a matter of fact, she does not talk much at all because of the aphasia.

I do the best I can. I am certainly not trained to be a caregiver. Some days are better than others but I see big challenges coming around the corner. I am 71 and did not plan on my "golden" years being spent this way. But, you do what has to be done. I find myself wishing that my parents had had lots more kids! Thanks for your reply.
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Moves and any change are very disorienting for those with dementia. And every two weeks a major change like that must be very hard on all of you. Would having mom in the same home and you and bro trading off each two weeks be possible? I would think that would be disorienting and hard for you and bro as well.

Some facilities are allowing new residents. Have you called the facility you are interested in? Have you checked their ratings on the Medicare site or the department of human services site or talked with the ombudsmen at the Area Agency on Aging?

A UTI is possible and will cause major decline, rapidly. Maybe she has had more strokes? Is her doctor a geriatrician? Start with calling the doc, many appointments can be held virtually, no need to leave home.

Concentrate on getting mom into a stable and unchanging residential placement. Or think about having mom stay put and you and bro swapping home for two weeks at a time. Though even the change of person caring for her could cause confusion, and it sounds like that does as well.
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texasrdr22 Aug 2020
I have been in contact with the facility and they are taking new residents currently. I will also take your great advice about contacting the Area Agency on Aging and the Medicare site for ratings. As much as it costs to place her there, you would think it would have a 10-star rating and be the Ritz Carlton of Memory Care!

I am fairly certain that she has a UTI as I tested today with a home kit and it turned the same color as the Positive indicator. I have notified her PCP (who is not a geriatrician) so maybe he will call in some antibiotics for her before Friday. I also would not be a bit surprised if she has had more mini-strokes. Thank you so much for your helpful reply.
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This sounds painfully familiar, and I think you are right in your supposition that the culprit is vascular dementia. It is always worth ruling out a u.t.i. but to me this does indeed sound like the classic "step-plateau-step" of vascular dementia, with this time's being quite a big, marked step.

As it is a marked change, do report it to her doctor and discuss possible investigations. But don't gallop ahead with those: it's important to pause and think what useful information they might provide before you put your mother through them.

If it has been what I came to think of as a "big bit of sponge crumbling this time" you might also find it gradually settles down again, somewhat; but to repeat I do urge you to report it, because there could be something nastier on the way.

The to-ing and fro-ing must be quite difficult for all three (four inc SIL!) of you. Would there be any way of sticking to one venue and still sharing the care?
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texasrdr22 Aug 2020
I was able to do a home UTI test today and it did turn out positive for a UTI. I plan to try to get another sample tomorrow and take it to the doc's office for them to test. I have given up on a "clean" catch and feel lucky to get any urine at all. Mom does not grasp the whole collection process and can not stop and start her stream. We have a virtual visit scheduled with her PCP on Friday afternoon. It will be via telephone, which will prove difficult for Mom to understand. Computer would have been better, but they only offer phone visits.

I am sure the living situation is difficult for her. Heck, it is difficult on ME! I leave my home and significant other for two weeks every month to stay at her home, where I thought she would be familiar with her surroundings. Unfortunately, my brother would NEVER consider coming to stay with Mom for two weeks. After all, he has a life to live and a lawn to maintain! (Sarcasm if you couldn't tell.) I know it will turn out that he will withdraw from the caregiving process completely leaving Mom's care entirely up to me.

I would truly like to know what type of dementia Mom has but there will be no big tests run or anything invasive done. I really appreciate your informative and thoughtful reply.
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Sorry, I posted this reply in the wrong "box"!
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If you haven't already, I would take her in to get tested for a UTI. UTIs are extremely common in the elderly (especially women) and often have no other symptoms except confusion and changes in behavior/personality. Antibiotics will clear it up. Untreated it would eventually cause sepsis.

It is possible that as your mom's decline progresses, the movement between the 2 homes is more and more disorienting to her. If she also has increasing short-term memory loss, this too would add to the soup. Has your mom's dementia ever been identified as a specific type? This may give clarity to its trajectory. I'm so sorry that you must be on this difficult journey. Your mom is very lucky to have such hands-on TLC from her family. May you have peace in your heart as you care for her.
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texasrdr22 Aug 2020
Thank you for your kind and helpful reply. As a matter of fact, I just purchased a "urine hat" to place under the toilet lid and some specimen bottles to get a urine sample to take to her doctor to be tested. I bought an Azo home test kit, but was never successful in getting her to understand the concept of peeing on the test strip! Plus trying to get a "clean" catch is almost impossible since, with her incontinence, she can't start and stop urinating at will. The antibiotics prescribed for her last UTI gave her really bad diarrhea (not that there is a good kind!) which was difficult for both of us.

We do not have a diagnosis of dementia type. I do think it would be very helpful to know what we are dealing with more specifically. My guess would be it is vascular dementia as an MRI of her brain a few years ago showed evidence of several mini-strokes and resulting damage. Which would be the best type of doctor to determine what type of dementia? Neurologist? Her PCP just calls it "cognitive decline" and has left it up to the family (my brother and me) to decide when it gets worse.

She really does not seem to have any memory at all. She does not even ever mention my Dad, who passed away in 2013, and to whom she was married for 68 years. She does not talk about the past or ever mention anyone's name from past or present. Sadly, she does not even remember where her bathroom is from one minute to the next. I have pretty much removed the word "remember" from my vocabulary.

Again, thank you for your kind words. Peace? If only.
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Changing her living arrangements every two weeks likely confuses her greatly, dementia sufferers do not do well with change. This can hasten the decline. Consider some form of facility. Roaming around at night like that can be extremely dangerous for a senior w dementia.
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texasrdr22 Aug 2020
Thanks for you reply. I am slowly coming to realize that, as her disease progresses, the change in living arrangements twice a month is very confusing. The roaming at night is a fairly new occurrence and I have now placed an alarm mat beside her bed to alert me if she is getting up. I think I have found a great facility for her but, with Covid, facility tours are not available and I have never seen the facility. I am already overcome with feelings of guilt and I am only THINKING about placing her. Can you imagine what I would feel if I DID place her?
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