ME OR NOT ME, that is the question.

ClarkEb

ME OR NOT ME, that is the question.  Whether it is better to….thats all i can remember, i think it was Shakespeare.  Anyways.  I have been doing fairly well adjusting to the various nuances of this here disease. I am doing better with recognition situation.  I have worked hard on my responses, although it is a bear trying to figure out who she is talking to so i can have a decent response.  I read somewhere about living in their world - which one!  I have been ME, NOT ME, Her DAD (a lot lately) and once i think her mom, three times in recent days I have been our son Eric.  We do not have a son. But, Trips home still fascinate me and get me in trouble at times.  My spouse will come right out of the chute in the morning with stuff to put in the car, take a break for breakfast, lunch or an errand and be right back at it until we finally leave.  The longer it takes to leave the more stuff is brought out.  It was all the lawn furniture easter Sunday.  Redirection, distraction is hopeless.  She packed up in the middle of the family Easter egg hunt the other day and sat in the car until we left.  (Luckily family and guests understand the situation.)  Attempts at distraction of redirection are usually met with negative feedback or the dreaded, “OK, I’m  walking home, to parents, to school,” etc. and when we get home i usually get “who put all this stuff in the car.

But the thing is am having the greatest trouble with is the dreaded “Thank you for bringing me home”, “you may come in if you want”.  Puts me on edge, because it has lead to being asked to leave numerous times.  This is routine for almost all post-dinner trips.  The later the trip in the evening, the greater the risk of being asked to leave.  All of which leads to a line of questioning (Perry Mason style) about who i am, family, schooling, where i live where i am staying for the night and so on.  The questions are rapid fire, leaving me floundering (deer in the headlights) for answers.  The all-clear comes when she will offer me a place to sleep.  I have tried leaving, changing hat, jacket (keep a supply in the shed and trunk) doesn’t always work. If asked to leave, the kids usually have to intervene, looking for their dad, will usually get ME back from NOT ME.  Sometime the trips are back to back.  Get home put stuff away, sit down, get up and start all over again, and again , and again.  There are most likely no standard answers, but maybe some suggestions.  My Play Book is getting pretty thin.

My apologies if this is a little disjointed, it has been a tough couple of days.  But the sun has been out (yay), great college sailboat races at the local college (she loves sitting and watching them) (yay) and the lawnmowers is finally fixed (maybe a small yay) and I was able to attend a all day Care Givers Conference presented and sponsored by: St. Mary’s County Department of Aging & Human Services.  Good info and networking.   (BIG YAY) 

Feedback and thoughts greatly appreciated, take care.

LJCHR

I have not experienced any of this but am so sorry that you are. There are no answers - as someone posted on this forum “you see one person with dementia, you see one person with dementia”.
I can only suggest to keep coming to this forum for the best support from people who know from experience.
I wish I had more encouragement but it’s where we’re at as caregivers. Take care of yourself.

Quilting brings calm

Are all the trips necessary? If trips ( even short errands) stress her out, then you might try to reduce the number and length of them. Have one of the kids run the errands or stay with her while you run errands.

Kat63

I have been experiencing the same thing with my DH. He packs (and unpacks) the car constantly. He is wanting to go home (the home he grew up in). Many times I have taken him for drives as he is insistent that I take him home. Some times just one drive will work, sometimes not and like you, have to take a couple of drives before he settles. Some things I have done that helps is tell him I’m not sure where he wants to go and can he show me. He will guide me back to our house, as we are in different city and state from his childhood home. But it helps him feel in control and he will be settled for that evening. Sometimes taking the drive and then stopping for ice cream helps. Just say do you mind if I get an ice cream first, and then just the redirect will help. I have not had the issue of being asked to leave. My DH doesn’t always know who I am and thinks I’m someone else, but might ask if I’m lacing. I just say I was planning to just stay here tonight and that’s always been ok.

Pat6177

I haven’t had to do the trips but I sure get the Me, Not me a lot. I am never sure anymore who he thinks I am and it changes on a regular basis. Sometimes I am his wife. Sometimes he will call me by my first name but from the way he talks, I am definitely not his wife. For instance, he’ll ask me if I am coming back tomorrow. It is easier when the PWD is a male and the caregiver is the female. I haven’t been asked to leave tho one night as we were getting ready for bed, he asked me where my husband was. A few nights, I could tell he was reluctant to come to bed but one of his ways of dealing with his dementia is to just go along. So if I act as if it’s perfectly natural, he will go along with it. I agree with entering into the PWD’s reality but it requires a lot of flexibility to do that when their reality changes so fast!

White Crane

this is tough. Have you contacted her doctor or neurologist to see if there is a medication that would help with her agitation?

M1

Agree Clark, I think medication might help. I think the suggestion about minimizing car travel might also help. The more they progress, the more you have to maintain stable routines and forego things. Family Easter egg hunts may end up having to go by the by..too much stimulation.