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I live with my mother who has Alzheimers(I'm the caregiver)At times she thinks my father is still alive(he's been gone 7 yrs) and my 2 younger brothers live here-which they may call ( for 5 minutes)once a week or stop by once a month for a qiuck visit.
My mother every so often,is now saying she doesn't live here, and wants to go home. I tell her, she is home, but keeps insisting that she lives somewhere else and is not going to stay here. I'll call my brothers and tell them whats going on and they tell me- try and distract her into thinking something else-which for some reason she keeps bringing up about going home. Does anybody have that problem- which they found out how to handle it?
Yesterday, she said about going home-so I took her out driving for about an hour-and she said it's getting late we can find the place tommorrow.
This is driving me crazy-I've got 3 brothers and 1 sister and when I tell them I need help-they say your living there-your the caregiver-what a caring family I've got. I don't know what to do?
Jim

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My mother is 91 with vascular dementia following a massive stroke in 2014. She is in her home which she purchased 24 years ago. Every day she says she wants to go home. She sees her things here, but she says that is just a trick; someone put things in the house that are identical to hers. I can usually handle it. She will get distracted and forget about it for the time being. The worst is when she gets agitated and insists she is going home and wants to climb over the bed rail to go home. I have to watch her all the time so she doesn't do this. She is unable to stand or walk on her own so this is almost a guaranteed trip to the ER. I don't think there is a good answer to this. It just requires dealing with it every time it comes up. A good day for me is when it doesn't come up. Then I can just deal with all the other issues.
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do you think she's comfortable with her sitters? my mom got more like this after she had her hip surgery and she'd been on Ativan for years; how strong a dose is she on?
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We live in a small rural area, so someone that specializes in this is pretty much nonexistent. It's kind of like a trial & error kind of thing.
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Bev1961, have you discussed the change in symptoms with her doctor? That is the place to start for medicine suggestions. Is her doctor experienced in the care of dementia?
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My 88 year old mother at one time only asked about her "Mama & Papa" late in the evenings. After recently fracturing her hip and having surgery, she has progressed to sundowning all day long. It still becomes worse in the evenings but it seems as though she cannot enjoy anything anymore because she is always looking for her family members that have died. She has been on Ativan for the hyperness/agitation for over 2 years but recently it seems as though it is making it worse. We try to make sure her physical pain is managed, thinking this is why it was worse, but nothing helps anymore. From 3 PM on every day is pure hell for me or her sitters. She is agitated, constantly asking where her "family" is an trying to go and look for them. Does anyone have any suggestions for medicine regimens that work?
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My mom does this all afternoon, every day, literally every 2 minutes sometimes for an hour. Then it stops and starts up again. Redirecting works - for 2 minutes... I just tell her we will talk about her 'going home' more tomorrow and she accepts that. But then it starts up again the next day or hour....
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joycetavolacci, in Ohio you can have up to a certain limit to qualify for Medicaid. I'm not sure what state you're in, but you may want to contact your local department of human services to see what the qualifications are for your state. You can usually apply on your own if you get the forms, or you can help represent someone else. All you do is get their information but where the signature is needed, you're just fine as an authorized representative for that person. Again, depending on your state, you may want to check to see what the laws qualifications are over there. If the patient is hospitalized or admitted to many times to the ER, social services may get involved and they may be the ones to suggest the nursing home. They have just as much resources as the average person, maybe more. The goal right now maybe to the hospital social services to get the ball rolling since they can help you. Your mom is most likely getting Social Security, so her check would definitely need to be turned over to the nursing home. When the money runs out, then Medicaid would definitely have to take over as long as there are no other assets that can be liquidated
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I have the same problem but haven't figured out yet how to answer ... I loved reading your answers
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My mom is 93 and fell resulting a contusion to her head and two fracture ribs. She is home and on pain medication. She has later stages of dementia and previously, came home from Re-Hab. They changed her one medication due to itching so much it helped but made her more sleepy and may been a factor in her fall. Its like your damned if you do and damned if you don't. I was thinking about putting her in a facility but they can be expensive. I don't know how much Medicaid would pay if it came to this! Can anyone tell me their experience with Medicaid and what is the protocol to get on it.
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As for someone asking about the cab, anytime a cab is dispatched, it's their job to arrive to whatever destination they're called. In our town, our cabs require cash payment, this may be different in other areas, so I don't know if the cab in this other area will even take a check. I'm sure if she has any trouble getting transportation, she may take matters into her own hands and just walk out and start walking back up the street toward where she used to live. I'm sure this kind of thing has happened (depending on a person's capabilities). I don't see her forgetting about her house and her bank account because I'm sure she's going to wise up sometime and realize something's off when she realizes she's not being taken home. This is why some people walk out the door and head back home even if they must walk. Some people will take this route when they have absolutely no other choice because they just can't get a ride. Yes, sometimes they get desperate because they know for a fact they have a house and money in the bank. Dementia and Alzheimer's hits people differently because they don't necessarily forget certain things such as a house or money. If you've lived in one spot for long enough, you're not as likely to forget about it. In fact I'll explain a perfect example of what I'm talking about:

A friend recently told me he thought he saw my foster dad in his old neighborhood walking past his old house. I thought this must be impossible since he was previously placed into the Alzheimer's unit of a neighborhood nursing home, and usually when you end up there with dementia or Alzheimer's, you don't get discharged alive because you're there for the rest of your life. People don't usually come back from dementia or Alzheimer's. My friend did describe what my foster dad was wearing and that he was carrying a bag like he always did. He described the person was wearing gray hat and coat, but my foster dad always wore dark blue hat and coat. Perhaps the nursing home gave him new clothes and I would be very shocked if they found a way to reverse dementia or Alzheimer's if I happened to see dad in his right mind again and once again living on his own. When I heard what my friend had to say, I was not only shocked but in disbelief knowing what many people know about this disease. I'm sure if not only my foster dad but other patients were somehow cured, I'm sure there'd be an awful lot of shocked people. I'm sure many people know there's already research being done for a cure, but I'm sure if that cure came, it'll probably come when most people aren't even expecting it. This is why I'm sure that if a cure unexpectedly came, this is what'll shock many people, because most people won't be expecting it and they'll be in shock and disbelief. Finally, I'm sure many people will be wondering where the cure was and why it wasn't here sooner since it could've saved so many lives all along
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Thanks for the responses. To debdaughter: The home will let patient's call someone if they have the phone number, but they would not let her call a cab. She is in a unit which needs a password to get in and out and changes monthly. But mom just insists she's call a cab. Alzheimer's is the worst thing that can happen to someone. I hate it!
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would a cab take her from a home like that anyway?
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All you can do is keep skirting the questions, yes tomorrow we will go home etc. there's no other way, I have the exact same problem with my husband (85) except I hear it all day long. If he really gets to rambling I leave the room that helps too. I pray all day for his bedtime to come as he sleeps about 12 hours. 💜
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My mom has Alzheimer's. Oct of 2015 my two sisters and myself put mom in a home. She is 87, our dad passed 16 years ago. We had been taking care of her daily for about 6 years, going to her hoyse evety day and spending time with her and getying dinner. We had meals on wheels coming at lunch time to deliver a hot lunch for her. We all have family's of our own. It was getting to be too much for us so we decided it was time for mom to go into a home where she would be safe and cared for 24/7. Also her money was running out and you need mney to get into a facility. We all have POA. We have to sell her house to be able to continue to pay for the home she is in. We now habe her home (which she loved) up for sale and it is empty. She doese not know we put the house up for sale. When we go to see her all she wnts to do is go home. She remembers sitting on her pourch, and that she has a pool and how much money she had. She also remembers she went into the home in Oct. But she sometimes thinks i am the oldest child when i am the youngest. She does not remember my son who she used to babysit for a few year while i was at work. She always fought with us to bath and wash her hair she wore the same outfit for weeks. If we would ask her to wash or change she would get mean and say we are dirty and that she washes more then we do, and how can we hurt her like this. Now thats shes in the home she does change her clothes daily and does not stink anymore but she must give them a hard time about her hair cause its always dirty. Every time we go to see her all she talks about is going home. And how much does this place cost, how much money do i have in the bank, etc. She can remember those things but cant remember her parents and brother and sisters are all deceased. I feel like i have pull the rug from under her by putting her house up for sale and cant tell her. I love my mom dearly but the visits are so stressful. I try to change the subject or tell her the dr said she camt come home yet. But she says she doesnt even see a dr. She has excuses for everything. Its just hard that i know this is where she belongs and that she cant go home anymore but im frustrated at her asking to go home all the time. She tells us if we dont take her home she will call a cab and that she needs her checkbook so she has money to pay the cab. HELP does anyone have any suggestion what to say to her anymore. Deb
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What I was thinking is maybe a home for this person is not in this world but perhaps in the afterlife. This is a mediately what struck me from your description. Since your dad's gone, your mom probably wants to go where your dad is because she probably misses him. Home for her may very well be heaven, which may very well be what she's referring to
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Overlyblessed, I am retired and half the time I don't know what day it is either. Giggle, I have a calendar I have to look at a couple of times a day to see what day it is and what I have to do. Reading the daily newspaper also helps me. When each day is the same, it is hard to know what day it is. Perhaps, the daily paper, if you go to church, the regular routine helps.
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I was actually responding to a post earlier from "Overlyblessed" who made enquiries re dementia/seizures.
Like you and others, I too am overlyblessed/greedy, I say "some folk collect stamps, teapots, not me I collect autoimmune illnesses with side tracks into other stuff."
I do find that this approach makes it easier for other folk to accept what is wrong with me :~)
I enjoy your posts, as my diagnosis is new, though I've been living with LBD over 10 years it's good to read someone who absolutely knows what I mean. Sorry you have membership to the club though.
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I, too, am overly blessed LucyCW--or as another patient put it, "too greedy". Lewy Body Dementia + Frontal Temporal Dementia + Complex Partial Seizures.

The one other point I forgot to include in my previous comments about "Home" is -- if the patient is 'end stage', regardless of what the rest of us want to hear or think, he/she may be saying "I want to go home" meaning "I'm ready to die".

Again, who knows. LBD is a totally different ball game, even if it is the second most popular of all the dementia's (a lot of us must have voted for it).
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Overlyblessed, I have Lewy Body Dementia and it gives me seizures.
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For me "home" is 40+ years ago when I was safe, happy and didn't have to make decisions, though when I want to go home I could not be this lucid about what I mean.
But as Mrranch2 says, welcome to our world, a weird, at times scary and rarely logical (in anyone else's world).
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Obviously, as demonstrated in all the answers, "Home", to us as patients, is a state of mind, not necessarily a place.
"Home" may be a physical location, such as where we live now, or where we lived when we were five years old (a memory), or a dear memory such as a grandparent's house.

"Home" may be a state of mind or routine--it's dinnertime, this is not my kitchen, I want to go home; again, based on memory, which all the dementia's affect.

"Home" may refer to people. If you have moved into my house to take care of me that's ok--we're "home". If you have a friend over to visit and I don't know or remember them, it's no longer my home. If you host a Christmas Party while your living with me and 25 people (relatives, strangers or friends is of no consequence--people make a crowd!) that's not ok and, though I've isolated myself in my recliner in my den, I want to go home (actually, all these people don't belong here so I must not be at home). In the same way being in a crowded location, such as the mall, a theater, or even a small restaurant (I've had that experience) may be. It's not so much I want to go home--to me, it's too crowded, too confusing, too overwhelming, get me out of here before I panic and cause a scene.......

To us, as patients, "Home" usually refers to a familiar setting where we feel safe. It may be our kitchen table, my recliner in my den, or a park bench where I like to watch the birds fly and the kids play. Your job, as caregiver or loved one, is to be supportive, don't argue, and try to figure out what in the world I'm thinking.

On behalf of all of us with dementia--I'm sorry, that's just our world. Welcome to it.
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Yes in their late stage a lot of times, my husband too will say he has to go home or wants to go home. Distraction and patience is the key to caregiving a loved one with AD. No point correcting or arguing with them. It will only exacerbate the problem and agitation and frustrating yourself. Whenever my husband says he wants to go home, I will just walk him and go to another room and tell him here we are, he is now home. In fact whenever I need to take him to another room or out of bed, I will ask him if he wants to go home and then he will get up and he will follow me to the bathroom which is home.
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ohmeowzer, did you read the other comments? just go along with her - my mom used to see things - that is, and I don't think this will happen with her, unless she knows it's not real but that was a different situation with my mom - my dad was the one who wanted to go home; the reality approach won't work
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My mom is doing that now , she is also insisting that dead people are talking to her. Sometimes hears singing and she is deaf . She is also insisting we live upstairs in a apt and the kids live downstairs .we live in a 1 story private home , my home for the past 11 years. She wants to go home she says she hates it here ... Her room has a beautiful new bed that the head goes up and down. My home isn't a palace but it's clean and nice . She said she's going back home. I am worn out , I am sick also . I tried the reality approach and she ends up calling me names the b word or I'm a jerk.she would wake me up from nap after I take my chemo yelling uncle Rolly ( her brother who's been dead for 20 years) is outside talking to her. Ughhhhhhhh .....she was Dx with Alzehemiers and is on medication, the dr wants todo another eeg, which I will get her into soon. I am at my wits end. Mom is usually a good patient and she's easy to take care of except for these problems. My brother is no help I'm doing this alone and working full time as a RN. What do I say when she hears the voices ?
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yes, joyce, agree with vstefans, allow yourself to grieve the mom you had; I know I did with dad, it was so hard and angel, he would do the same thing, go down his driveway "going home", just so glad he wasn't driving by then; in his case, for one, he and mom had moved quite a while after I had left home but he kept saying I was supposed to be living there - he wasn't by himself, his grandson was living with him so I told him I thought he was thinking of home as being the home I grew up in and he knew that where he was wasn't it, so to quit "being logical" and trying to convince him he was home, maybe tell him he was living with him - as in dad living at grandson's rather than other way around - though, in my case, didn't really want grandson to get too comfortable with that thought since, and now that I think about it, guess this must have been earlier, he had tried to get dad to sign the house over to him and he wouldn't do it, not sure what would have happened had he tried it at that point, hm...but I have a question, vstefans, somewhat unrelated to dad but not to grandson, what are you saying about Topamax? - he was put on that for migraines
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Joyce - I think maybe you are mixing up natural, normal GRIEF with "feeling sorry for myself - this is a SAD time seeing your mom like this, whatever her age....some people age much better than others and it can be extra hard, missing your Mom the way she was, while she is still alive and here with you. I say cut yourself some slack. Hugs, and thank God your mom has you and you both have a good caregiver in your lives right now.
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My mom been saying she wants to go home and her mom is talking to her. My mom has later stages of dementia and is going to be 93. I feel she may be upset with me and I may be pulling away from her emotionally and I just need a break and maybe I am feeling sorry for myself. I been feeling like this for weeks now! I am sure I am not the only one who goes through this and I am the only one who cares for my mom and thank goodness for her caregiver she is wonderful. It is funny how people come into your life when you need them. My mom lives with me and she is mild compared to some I have heard about. I just have my moments of feeling sorry for myself.
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I am in same situation as you are. I have a brother who doesn't want to help and my mom claims to want to "go home" every afternoon.... She'll even set out walking until she gets tired and turns around. Neither me or my dad know how to handle the situation.
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Go home question? Change the subject, quickly, you don't want to go there via conversation
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Overlyblessed, I have had adult friends with seizures and they report that on days with seizures especially their memory and ability to organize anything is quite poor. Kids who have bunches of seizures have a heck of a time learning new material at school too. Maybe that's what it is, versus medication side effects - Topamax is notorious and even gets called "dopamax" a lot.
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