insisting to go home nightly

MistySmithPhD

I have cared for my 86 year old mother with Alzheimers in my home since her initial diagnosis with vascular dementia approximately 5 years ago.  In the last 3 months my sister has moved cross country to live with mom and I in my home to assist with her day time care so I can return to my work in person during the day now that COVID-related working from home is no longer permitted. About 2 weeks ago mom starting having difficulty sleeping and increased agitation because she never felt rested and her hip/low back was painful. She had broken her hip last year and she now has arthritis/osteoarthritis in her lower back and hip which causes her pain.  She is usually not an aggressive person.  Until recently, she did ok during the day time recognizing she was with family, in our home, and was interactive during the day but as she sundowned as the evening progressed she would be less interactive but would go to bed without much argument.   The aggressiveness and insisting on leaving started about the tie the mirtazipine was started by her primary care doctor to help her improve her sleep. It would take 2-3 hours to begin making her tired and during those 2-3 hours she was extremely agitated, aggressve and insistent of going home (i.e., wanting her car keys, jacket, shoes, etc. and tryign to push past us to go outside at night even when we tried to calm her and assure her she was safe her and she was meant to be here and everyone she cared about knew she was here.) During this time she was insistent my dad (whom passed away 11 years ago) and/or her parents ( whom passed in 1985/1986, respectively) were waiting up for her and worried about where she was at so she had to get home. She would get so intensely angry at any suggestion of staying here.  I don't think she realized we were her adult  children. She would push,  shove, make threats against us and herself all in hopes of leaving.  Each night as the mirtazapine finally kicked in she would eventually end up sitting down, closing her eyes and falling asleep on the couch. After about a 30 minute nap, we could rouse her long enough to help her into bed.   Next night, same thing all over again.  None of this had ever happened before so we called her doctor about her difficulty sleeping comfortably.  The doctor  advised us to stop the mirtazipine and  she switched her to a nighttime prescription of trazadone.  Last night was our first night with the new prescription.  The wanting to leave behavior started again last night. We tried talking with er for awhile to calm her and eventually got her t take her night time meds a little early (8pm'ish) and within 20 minutes she was asleep on the couch so it didn't progress to the extremely agitated/aggressive/threatening level.  She slept through the  night without getting up, so I believe her quality of sleep was improved. I am hoping the sleep will help her to be less agitated and less aggressive after dinner.  I hope this "i have to go home" phase will subside.   I am wondering how others comfort their LOs in the mid/lated stages when they insist on "going home" or that deceased loved ones are waiting on them.  She has even gone so far as saying she "spoke to them this morning and they are expecting her home."  She is not showing signs of UTI or constipation. In fact she is quite regular in her BMs.   She is diabetic but we monitor her glucose throughout the day so it is well managed. Her osteoarthritis pain is still giving her trouble, but I am using tylenol and topical lidocaine to help her and a heatling pad when I can get her t sit down with it. In her earlier stages I could remind her my dad and grandparents had passed,  but these days I just assure her that they all know she is here with us and that she is safe staying here with us in Utah (she forgets and thinks they are is back in WV where I grew up and she can walk or drive to them in 5-10 minutes). Any advice, suggestions, or other approaches to prevent or reduce her anxiety would be appreciated. Thanks.

Arrowhead

I went through the same thing with my wife and it lasted over a year and a half. She didn’t just insist on going “home” (her childhood home), she made every effort to make it happen. Ten times she got away before I knew she was gone and three led to a Silver Advisory Alert. She attempted to leave our house every day, several times a day. For a short while I would let her walk a mile or two while I followed in the car. Nothing I could say or do would deter her. Putting alarms on the doors helped. She stopped trying to leave the house a couple of years ago, but when we visit family and friends, she still tries to leave. Eventually I bought a portable locking device to put on the door which she can’t figure out how to unlock. I bought it on Amazon for less than $20.oo and I attached pictures of it here. It would work at home as well. You may never find a way to talk her out of wanting to and trying to leave, but you can take steps to keep her from doing so.

Ci2Ci

Ugh, my exact same experience, MistySmithPhD. Recent introduction of Mirtazapine, too. Although, she'd started having these "needing to leave" episodes, on ocassion, shortly before that. I call it time travelling: needing to get back home to her young children; back to work; etc. Since the past several weeks, she is just trapped in her timeline (of like 40 years ago). No longer able to re-orient her. Sadly, the attempts to flee have come with agitation about not being allowed to do so. And, further developing to #StrangerDanger and claims of being kidnapped or imprisoned, as her brains way of explaining the confinement, I guess. *sigh*

CanyonGal

My mother has incidents of "sundowning"  and mixing day and night times up (internal body clock is off). Not getting enough sleep (overly tired) seems to trigger it with her - also leg pain, boredom, or some unmet need (hungry,thirst). Triggers can be difficult to discern. With my mother, she gets fixated on things and it is difficult to reassure her that everything is okay and we will "fix" it in the MORNING.   Lately, there is lots of confusion in regards to separating dreams and reality, especially if she is dreaming of past events.

It is difficult to deal with and wears everyone out but reassuring that whatever the issue is you will take care of it. (My stepfather sundowned and there were some wild stories on what I needed to resolve, like a horse trading operation going on in the barn, or feeding chickens and milking cows.)

Tips for Coping with Sundowning | National Institute on Aging (nih.gov)

Jo C.

The kindness of using therapeutic fiblets can be of assistance.  Telling her that her parents are coming tomorrow, or that the parents are on vacation or visiting a relative, or that they have a cold or whatever to hold her off but not put her off may help.

Just wanted to say that it may be that her pain is contributing to the increase in negative behaviors to a degree.  For the back issues, it would be good to speak to the physician and ask him/her about using Interventional Radiology to do an injection under fluroscopy to the affected area to relieve her. It can be dramatic, BUT I would insist on Interventional Radiology with the physician specially trained in that field AND that it is done under fluoroscopy so that the injection goes to just the right spot.  It is quick and no need for recovery as there is no need for anesthesia; howver, with dementia they may want to do a little relaxing med.

The results from a successful injection is most often immediate.  My mother who could not stand much less walk due to the severity of her back pain had this done and she was up and walking without difficulty very soon after the procedure.

Fast forward to beginning of 2021; something happened to my hip/spine; don't know what but I could not move and pain was excruciating with no help from lesser measures..  I had the injection procedure done in Interventional Radiology under fluoroscopy.  It was not painful, took only a few minutes time and I too had immediate relief.  Thankfully I am still fine with no recurrence.

It may be something to look into and see if it would be appropriate for your mother.  No way would I let anyone do that without fluoroscopy and would be much more comfortable to have the specialist do it for best outcome

Best of luck; let us know how it goes , we will be thinking of you.

J.

CanyonGal

I think I need to get a door locking device to keep grandkids wandering out of a hotel room on vacation.