Mother Says "This Is Not My Home"

Hi Robert,

I sure sounds like your dad has his hands full.  I'm sorry for both he and your mom that they're having to deal with this disease.  :-( 

Is it possible your mom is experiencing sundown syndrome?  Here is an article about it, as well as some tips for minimizing it.  http://www.caring.com/articles/sundown-syndrome

I'm hoping someone else posts with some firsthand experience for you.

Hi Robert,

I'm glad you've come by. I'm so sorry to hear of the difficulties your mother is having, and what a strain that must be on your father and yourself and your other family members. What great cousins to come and help like that; family is so important and it sounds like you have a very strong and loving one, and that's wonderful.

When I was a child - teenager, really, I think - I can recall visiting my great-grandparents and my great-grandmother Mabel did the very same thing - insist to my great-grandfather Charlie that they should leave and let these young people have their house back, they didn't need them overstaying their welcome, etc. And she'd stand up with her walker and try to leave. When asked about her house (since she didn't believe this one was hers, and it had been for many years at that point, and before that, the house directly across the street) she would describe some house from much further back.

I don't know how to help for I don't know what might distress her, but I know that I would likely be curious as to where she feels home really is - is she remembering a childhood home, maybe?

Best wishes to you and yours, and do keep us updated on how things are going.

LauraL 

Hi,

My mother in law did the same thing that your mom is doing.  She had Sundowners and the care facility she was in was so helpful.  We stopped calling her after 6:00 p.m. as she would be so confused.  If we spoke to her during the day, she was much more reasonable.

With her, the staff could tell that we were staying in a hotel and would be going home tomorrow and she would immediately calm down.  She first started this when she was still in her own home.  She told us she stayed at a farm(which was 2 miles away), the county courthouse(now has housing in the basement), the local prison (it was newly built and very clean) and also had a room in the basement of the local funeral home(Motel 8 was full that night).  It got to be funny after a while and we were anxious to hear where she was staying next.  She was only this confused at night, during the day she was fine.

Calmly assuring your mother that she is well cared for and that she is loved is usually enough to get them through.  We could quickly change the subject by asking a question about her childhood or a sibling.  She would quickly divert to that and forget about the housing questions.

Trust it is going well for you.  I have three siblings and we cared for both of our parents plus a mother in law, a grandmother in law and a dear aging friend from our church.  It is a privilege to serve our seniors!  They have worked so hard to serve us!.

Hi Robert,

For years I worked in nursing homes. One of my favorite "residents" (she had AD too) used to always say "I finished my job, I have to go home". We did our best to assure her that she was home. Eventually, she passed on. Then I used to think, she was right. She was finished and had to go to her new home, in heaven.

If you have not already done so, please have your mother checked for a urinary tract infection.  It's symptoms are quite similar to and can amplify the existing dementia, if any.  In just a few days of antibiotic treatment, you will see a significant improvement in behavior.  Good luck.

Hi Robert.  I have been taking care of my mom for 8 yrs. now.  She has Vascular dementia--late stage, Parkinson's, strokes and other physical ailments.  It  sounds like your mom may be having some sundowning and is obviously feeling very anxious at bedtime.  My mom, after all this time still wants to go home.  I have found that the more anxiety she has the more she wants to go home.  It really does no good to insist that she is home since the cognitive ability to recognize the familiarity of her home  is not there.  I have found that instead of trying to bring her back to reality it is much easier on the both of us to go into her world.  I start out by asking what she is feeling.  It is usually fear.  Fear that no one knows where she is.  The people she is worried about are all passed on.  I reassure her that they know where she is and that because it's gotten late would she please stay with me for the night and keep me company then I can take her home in the morning.  This helps most of the time.  There are times when I have to give her medication because she sometimes gets so upset that she can hardly breathe.  We also have a routine every night before bedtime, at the same time, Tea and a small snack and I remind her that it's her bedtime snack.  I keep the house pretty quiet during this time so she doesn't get overly stimulated and have a quiet conversation about pleasant things during the day---even if I have to make them up!!  Music also helps--something soothing.  Mom picked out her own at Wal Mart and she listens to it when she gets in bed.  I hope some of this helps.

Hugs to you and your dad & mom,Terri

After receiving some caretaker counselling (my mom has dementia), I find that the most important piece of advice I was given is to ENTER THEIR WORLD. . . do not argue with them, you will lose and it will only upset them further. . . they need reassurance and comforting. . . hand holding helps as well as does listening to their favorite music. .  . .hope this helps.  .

My 94 year old mother has recently been asking to leave and go home.   She was really aggitated, not like her at all. I am so glad this was posted.  I enter her world with her which is in the 1920's and talk about the house the family lived in then.   I do hug her a lot and this seems to help.  I will try the late night snack, etal.  Thanks for the advice.

"Enter their world". What  wonderful piece of advice. And perhaps, you will get to see a slice of the past...

My mother has a few times mentioned that she didn't know that this was her house.  But the most obvious action was when I get her ready for bed at night.  I would have her sit on a chair in her room of 55 yrs while changing her clothes and her Depends.  When I finished and she was ready to get into bed, I would tell her to go to the bed while I went to wash my hands.  She would get up and walk right past the bed and out of the room.  I would correct her and she would apologize for being confused.  My thought was that the bed in her head, which is from her childhood, was in a different position within the house and/or room.

Don't move furniture; get rid of clutter; keep it simple.

I would highly suggest you not remove any of her belongings or you may be dealing with another problem. My mother-in-law lives with us and is always saying she wants to go back home. She started out living with another son when my father-in-law passed away a few years ago. This only  lasted about 5 months. She packed her bags and said she was going back home then.  Another son took her in. This lasted a couple years before she again packed her bags and said she was leaving. She has since been with her son (my husband) and I for 17 months now. She is always saying she wants to move out and go back home. She wants to be back with her friends who she cannot remember their names or where they live. I have not yet figured out what time frame she is in. I just tell her that until she can tell me who this person is and where they live, she will just have to be satisfied living with us. She usually says she doesn't want to be a bother and I reassure her she isn't. She then forgets about it for a while.

The reason I suggest you do not remove her stuff is that she is always looking for everything she has ever had. If she doesn't find it, she claims someone stole it. She hides things constantly, again claiming someone stole whatever it is. As long as it has not left the house, I can always find whatever she is looking for and ease her mind that there is no one here that would steal her stuff. If I rearrange things on her, she gets really upset.

The real problem here is that she had a stroke due to a flood that destroyed most everything she had so she doesn't have a lot of things she claims she should have. I have to remind her of this which, sometimes doesn't go over to well but I do the best I can under the circumstances.

The idea to enter their world, is hard. The concept is nice, and no truer word was spoken that you won't win the arguement and they'll be even more upset.  Does this include when they see things that aren't there??

I want to respond to Ninajean and her questioning our elders when they mention things that are "not there."  My wife's grandmother was still living when we were married 25 years ago.  At age 80 she traveled to Israel to ride a camel.  Was the highlight of her life to make that trip.  When she was around 88 she started to imagine things such as wild buffalo across the street in a field.  She would often laugh out loud as "the buffalo were frolicing in the fields."  At first we tried to correct her which made her angry.  She did see them and "you cannot tell me they were not over there. It is as plain as the nose on your face" was her reply.  As a family, we agreed to not correct her, within a few weeks, the buffalo disappeared.  If we had insisted on correcting her on this issue, it would have made the situation very difficult.

However, if she is imagining people breaking into her home, unusual fears such as "no heat in the house, no food on the table" then it is time to see a doctor and discuss it with them.  There are many causes for confusion that are medical related.  Call your doctor, they are usually very helpful in solving the mysteries.  If not, get a second opinion.  Another idea would be to review all the medicines your loved one is taking.  Are they over medicated?  Is one medication reacting to another?  Many times, your pharmacist can assist you with this.

Have a super day and be encouraged. 

In caring for my own mother, she insisted that she was moving.  This was especially true at night.  I would ask her where she was going.  She was going home - and for her she was moving back to her childhood home- or she was getting an apartment.  I usually did enter her world and asked her when she was moving and how she was going to do it.  I am grateful that she always told me that my brother was going to get a truck - "no heavy lifting for me" I would respond.  She would smile and agree that Paul was always stronger than me.  Many times, I told her we would do that in the morning if that was ok with her.  By morning, she would forget all about it.

She spent the last two years of her life in a person care facility.  To make it seem more like home, we took some of her furniture, her favorite rocker, her bedside crystal lamp, some of her art work and pictures of her family that were always in her home.  On one visit, I found all these items in a box in her closet.  I asked my mother and then the care staff why they were there.  "She is getting ready to move home" was the responce.  I put the items back on the wall.  On my next visit three weeks later, they were again in the box.  Finally, one care taker asked if they had to be put back up.  My mother had packed them five different times.  For the last year of her life, they were in the box in the closet.  She was moving home soon.  She was happier with the items in a box.  It is about her happiness, not my mine.  My mother has passed away about 14 months ago.

Thanks for all the replies. They have all been helpful. Mother's obsession with going home has not gone away and we have tried many tactics, some of them successful, some of them not successful. Unfortunately, the latest episode ended in an injury. I had been with my parents over Christmas and it was a good Christmas. Mother was again saying she wanted to go home. I took her for a ride and brought her back one day. That seemed to settled it temporarily. Other times I said we'll go home in the morning.

On New Year's Day, in the middle of the night, she began saying she wanted to go home and packed some things and headed out the door. My father went after her. It was freezing cold and she was not properly dressed.  When my father went to get her, she said, "You're not my husband" and refused to go inside. My cousin Grace (mother's niece) was called and came over. Meanwhile, Mother had fallen outside and injured herself. Even though she is small, both my father and cousin had trouble getting her into the house. They got her in bed and calmed down, but she was in pain. By now it was about 3 a.m. They were so exhausted, we decided to wait until morning to call an ambulance. I was out of town on a business trip, but I made the call at 9 a.m. to the ambulance and they came over and took her out on a stretcher. The doctors x-ray'd her and found she had a cracked pelvis -- but would not require surgery. She was in the hospital for a week and just yesteday (January 7) was moved to a nursing home where she is to undergo physical therapy.

She has recovered her faculties to the point of where she was before fall. Indeed, It talked with her by phone three days ago day at the hospital and she knew who I was and wanted to go home. I'm headed to my parents house today and will visit her tomorrow with my Father. He and my cousin visited her last night for the first time since she was moved. She's been asking about her toy poodle by name, which is a good sign. She can sit up some, but obviously needs care and therapy as her pelvic bone needs to continue healing. Clearly, the challenges ahead are more and more difficult. Someone besides my father will have to be with her 24/7, even after she returns home. I'm trying to convince both of them to go into assisted living. My father has strongly resisted assisted living for many years. As a dear friend of my wrote me yesterday, "Growing old is not for sissies."

My Mom sees a mix of things. There are people in the neighbors tree and every night rescue attempts are made to help them.  The help is a huge light across the lake and cars on a road over there. There are tiny birds she is throwing food out for, and people who hang out at the end of the drive. None of these upset her and she finds it comical most of the time and anoying the rest. These I can laugh with her, but I never admit seeing it. My problem comes from the others she sees. My husband will be outside and she sees him talking to people, he doesn't see. She is determined he is letting people take trees, selling her house, and raking in the cash at her expense. She turned on him with a vengence. Swears he steals her mail, and says she is afraid of him.  He has signed an affidavit saying he has no right to do anything, and wouldn't. I try to assure her I would never let anything happen to her home ect. He stays away from her, which is hard since we live in a remodeled 2 car garage at the house. She hid her ss check and swears he took it. Yesterday we had a good day, and I am hoping some has been the stressful holidays. She says she trusts me, and so far it's her and I against the world. The worst part was since I made more, my husband quit his job to stay her with her. Now he is trying to find a job so I can stay home. On the up side it has brought me back to having faith, so I know we will muddle through.

It sounds like your mother's dimentia is getting much more severe.  Let me encourage  you to seek out a doctor and talk with them.  Be sure she is not experiencing some type of physical issue that is taking a toll on her mentally.

The other thing I would mention is what I call "Good Child - Bad Child" Syndrome.  As parents age, they form a catagory for the good child and one for the bad child.  In many cases, the main care giver is placed in the bad child catagory.  Nothing they do is every right and usually they are blamed for things.  In our family, my sister was my mother's main caregiver.  She was the bad child even though she was wonderful to my mother.  When we had to have difficult conversations with my mother such as the transition to personal care and downsizing her home, I told her the news.  However, being the good child, she blamed my sister for the decisions.  Once that is engrained in their minds, it is a tough one to change.  I am not totally aware of your situation but I do wonderful if she has placed your husband in the bad child spot - even though he was kind to move and to quit his job to care for her, she has placed him in that catagory.  This was helpful to us to understand and really helped my sister cope with the stress it put on her relationship with mom.  For many years, my sister and my mother were good friends.  It was as she aged that my sister was placed in this "new" catagory.  Many times I personally think, that they make that adjustment because the caregiver is making decisions that are taking some of the control out of their own hands.  Once that starts, they want to blame someone.  The caregiver unfortunately gets the blunt of it.

Thank you!!! That makes so much sense. My Mom was always independant in every way even when Dad was a live. He drove truck and she had to do so much on her own. I see where she might see my husband as trying to take over. Today she and I decided I would get the mail from now on as she feels he is hindering her getting any mail. This site has been really helpful. I am also learning to respond to a situation rather than reacting it's al making a difference. I can't change Moms issues, just my ways of dealing with them. 

they actually have a name for the night time wanna go homes? sundowners seems to be a symptom my m-i-l popped out a few times. she is 84 now and still insists her apartment is in california yet she remembers moving to arizona. some times she makes me laugh sometimes i get worried and i cannot talk to her because she only speaks spanish and i do not with out a menu;lol; we were told 2 years ago that she had progressive dementia and just as of 12/01/08 we were told it was Alzheimer's. my husband and i are horrified in the fact that the brother we trusted to care for her has done so poorly that she fell and was in the hospital for 5 days before we were notified(by the hospital as she was being discharged to a facility) and now there are other things we are finding out about her care that bring me to tears. i keep telling myself that all i caqn do is love her and that will help.we left arizona (my husband and i) telling his mom we would see her soon and she said " i like it when you visit me in watsonville". she made me laugh with that and we said see you in watsonville as we walked away. 

i think by "joining them in their world" is a good thought but i am am not sure if my mom in law even knows which state (OF MIND OR COUNTRY) she is in;lol; i want to hug you and tell you laugh at life and urself; crying only makes ur face red and eyes puffy.

hi Robert,

You have many suggestions noted here, hopefully one will work for you.

When I was working with some residents a while back, I had something similar happen. There were four of us at the table and we were working with my Memory Jogging Puzzles and Memory Exercise Cards. All of a sudden one of the men asked, where am I and how did I get here?

One of the other residents told him to be quiet, but he kept asking the same questions, only louder.

Finally, I said well Bob, you might be visiting here like I am, there are many visitors here. He seemed satisfied with it and we talked about it for a few minutes and then went onto another topic, then back to the activities.

Sometimes it is easier to go with the flow than to try to explain something they don't want to hear or don't understand. That just leads to arguing and bad memories for you, they will forget. You know what is correct and it really doesn't make any difference.

You might try asking her why she feels that way or what she doesn't like.

If your mother is leaving the home, you may want to make it more secure where she can't get out. I remember my mother had to be watched very carefully, not only for her own protection but for the families.

takeCare. karen

So many of the above comments are familiar.

My 57 yr old husband has demntia induced by a traumatic brain injury. I am his at home care giver. At times, he too asks where he is, is angry about changes I made while he was in the hospital and nursing home. At times he will look at me and ask "who are you"? - over and over.

He thinks I am stealing from him, and hides his wallet in all different places. Last month he said he was going out to visit someone. Within a few days, our spare set of keys was missing. Alsoour spare cash we keep in the house. He had hidden the cash but couldn't remember where. The keys I later found in his coat pocket.

He is mostly rational during the day. At night he can become agressive and angry to the point of being frightening. lately, we've been trying to space his medication out more evenly during his waking hours and that seems to help. He is on valproic acid syrup.

What I find difficult is the swings between normalacy and agression. Normalacy and not knowing where he is or who I am. When hes acting rational, he wants to plan for starting his business again, renovating the old house we bought for our retirement, buying a boat for recreation. He seems so normal at those times, that it's tempting to think that we could do it. By evening, he'll be telling me to get out of his room, out of his house, and out of his life -  is easily aggitated. He says he's afraid of me. Afraid I'll harm him.

The swings beteen personalities are very difficult for us both. When he returns to normal and sees what he has thrown and broken the night before, he is appologetic and sorry. It's a roller coaster ride that came on suddenly after his fall and brain injury.  I just try not to aggitate him at night. I don't discuss household problems with him because he gets frustrated and angry. Our relationship is no longer a partnership. It can't be. Recently he told a former employee to return from California becaue he is restarting the business. I have to call this person and tell him not to return.  There are no answers. Little things can make little improvements - like knowing when and what to talk about, or reading other people's comments. But it's a one way journey. Particularly sad when it happens to a man in the middle of his life. I am trying to keep him at home as long as possible, but his doctors say eventually that will not be possible.

hello,

No two people are alike or react the same way in any circumstance.

You have heard that phrase, walk a mile in my shoes. . .then talk to me. I am sure that is how you feel.

It is a learning process and it sounds like you are picking up on some trigger moments. Don't be so hard on yourself or him. The person that you have to call will understand and is probably already questioning it himself. It's okay.

You have a sentence or two which in my eyes are key.

"Little things can make little improvements - like knowing when and what to talk about, or reading other people's comments."

They are little things and improvements are baby steps. Sometimes how we react can cause one to become more upset. Stay as calm as you can, pray and praise. Realize you are doing the best you can.

"But it's a one way journey."

We are all on a one way journey, someday, someone might have to care for you the way you are caring for him. takeCare. karen

http://www.memoryjoggingpuzzles.com

Dear Puzzles; Thank you for your sensitive and thoughtful respone. Yes we are all on a one way journey indeed. As my husband's sole care giver, I do get tired and "down" at times. I am making plans to move closer to his family. LIving several States away is now no longer feasible as it was before the injury.

There is a helpful article on this web site by Carol Levine, who was her husband's caregiver after he developed dementia from his brain injury.  She spoke about the Post Traumatic Shock that she suffered through after the car accident she and her husband were in. I'd never heard it expressed that way, because we think  only soldiers who witness sniper deaths get  PTSD, but civilians get it too.

I witnessed my husband's accident, and there is something about the immediacy of watching or hearing the 'unthinkable' unfold before you -  in real time that leaves a very special kind of shock. My husband was on a 3,000 lb. piece of equipment that rolled, hit the ground and threw him 15 feet. The impact made the house shake beneath my feet. Like many traumatic brain injuries, his breathing was already shutting down when I ran to his side. I remember squeezing my eyes shut and reopening them repeatedly as though I could erase what I was seeing.  I could not believe the horrible thing that was happening before me - on such a beautiful Spring day. How could the sun be shinning and the new leaves look so green, when my husband lay dying? My senses became  accute and clear. How could the unthinkable be happening on such an ordinary  Saturday, full of new promise? Well, he stopped breathing but he didn't die. I begged him not to leave. When the ambulance came they resusitated him and he was intubated at the ER. I stood on the hospital lawn, phoning  the news to his mother,  watching the giant Medivac helicoter blades whirl and slowly lift off. I held our little Terrier Jack, as my husband disappeared into the night sky, on his way to the regional Trauma Center. Those pilots and crew who risked their lives to save his, are heros. He came out of his coma 2 1/2 weeks later.  For the first year I had that 'deer in the headlights' look that Jackie Kennedy had on Air Force One.

Like Carol Levine, I too thought that with enough time, love and therapy, my husband would recover. Last Summer his recovery slowed. Four mos ago, he was diagnosed with TBI induced Dementia. His left frontal lobe is attrophying.

I look at my care giving as a gift - not to him, but to me! For the last year and a half I've had the opportunity to help someone and in a way return all the times I've been helped by others in my past. A year and a half ago, I didn't think I had the emotional strength to stay after such a loss. Every fiber of my suvival instincts said "flee". When I made the determination to stay and accept his Guardianship, a courage I didn't think I had was uncovered. That is the gift I have received; finding that I am stronger than I thought and developing new strength every day. It's hard, no question about it. But it's also such a blessing to have this borrowed time.  I've also always been a very self centered person. These last 18 - 24 mos have helped improve my character. My husband's injury is a second chance to act more nobly than I did at other times in my life. Almost a chance at personal redemption. What's most important is,-  no matter what happens, I know that in the end I'll be able to look at myself in the mirror. Know that I acted the way I hope someone will do for me should I ever be helpless to help myself. 

goodMorning,

You are an inspiration to many.

Remember to take time for yourself and some walks with "jack". I have a wire haired terrier named "jack",  he takes me on many walks.

I love the early morning ones especially, when I take time to be thankful for the blessings given to me, that for many years I have taken for granted. . .all of my senses. Seeing, hearing, walking, talking all of them are so precious and they can be taken away in a second.

While walking I close my eyes and just listen to sounds. When I hear the birds chirping I can't help but smile and I am grateful that I can hear and I go down the list. When we see loved ones lose these precious gifts we develop more empathy towards others and this is a wonderful gift.

You have witnessed a horrific tragedy and living it with daily. I'm sure the emotions you are feeling are the same as a veteran coming home from war.

Hopefully, the flashbacks from that day, will become easier for you to handle. takeCare.karen