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It seems over the past two weeks, my 90-yr-old mother with dementia has declined quickly. She spends two weeks at her own home with me there, then goes to my brother's house for two weeks. During the last stay with my brother, she walked into his and his wife's bedroom at 3am, talked to their pit bull who was sleeping in his crate on the floor and that woke my brother up. She was in her pajamas but had her tennis shoes on and some of her clothes were in the basket of her walker.


When he asked her what she was doing, she said she was ready to "go home." She said that there was "a lady at her house who stays with her sometimes that would be wondering where she was." That "lady" would be me. Mom does not know where she is when she is at his house, nor why she is there and asks him about it the entire time. Sometimes she thinks he is her brother (who died 2 years ago) and she never remembers his wife's name. She can not find her way around his house (although she did get to his bedroom!) and she has to be led to whatever room she is trying to find. She has been visiting his home for over 25 years!


When she came home from his house this past Sunday, she did not know she was in her own home and did not know where anything was. She "toured the house" from one end to the other, commenting along the way about what a nice house this was and how she loved all the decor. I try to get her to go to the bathroom about every 2 hours or so but, to this day, she does not know where it is. After she uses the bathroom, she always asks, "Where do I go now?" This is a house she has lived in for over 45 years. Her inability to find her way around was not the case before this last trip to my brother's house.


Since she has been home this time, she has not used my name once. I asked her if she knew who I was and she hesitated then said "my daughter." When I asked her what my name was, she did not know.


She has severe aphasia and is difficult to understand in the best of situations. It seems to have worsened in the past few weeks.


I guess what I am asking is if this rapid decline is "normal" for this awful disease? It seems I got a different mother back this time.

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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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Reply to lealonnie1
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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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Reply to dazam1
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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 7, 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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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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Reply to Grandma1954
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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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Reply to NYCdaughter
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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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Reply to DavidFindlay60
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texasrdr22 Aug 7, 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. 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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Reply to Ricky6
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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 8, 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, 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 7, 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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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 7, 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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