anyone dealing with this??? - Alzheimer's Disease & Dementia Message Board

Jess22 · 08-10-2006, 03:02 PM

Hi All,
Things with Mom are beginning to change somehow and Im requesting info. from some of you who's loved one may have done this and what could this new change mean????? Most days when we visit mom she is happy and sassy as a little lark but it can change in a few hours or even minutes. Yes I went through all of these behavior things even before she was placed as she lived with me for two years prior as most of you alreay know. Im going to try to describe what is happening as follows...... Always it seems during a visit in some part of the conversation she will ask to go home or now even say she doesnt have a home. She is Im almost sure back to her teenage years and she is constantly asking me to bring her brothers for a visit, asking about her Dad, describing her apartment she had that my papa built for her when she was 16, which she still owns and is located in the yard of her big home that she never refers to. She talks about me bringing her chevy coupe green in color which she owned as a girl all the time. She always thinks my Dad is off working building bridges which he did when they were first married and we were babies. The other night she kept telling me dont you remember when you lived in my little apartment with your mom and Dad???? For the most I let her babble about stuff and just go along with it "Stopped a long time ago trying to REMIND her of reality now. I can live with that, the thing is she is starting to get upset and a bit irate with the workers, refusing her meds, trying to get out the door when visitors are there, and making them call us so she can just hollar at me and say they have locked me up over here and they tell me I cant get out and I will leave here. I want to come home they can have that room and all that stuff it isnt my stuff anyway!!! she gets hard for them to deal with and it troubles me. They as good as they are may become tired of it all and make us take her to a new place with a locked unit. Mom is very claustrophobic and I did not want her in that type of facility. They are so good to her there and I appreciate it and all the kindness they show her but frankley they are beginning to not only call me at home at night but also in the daytime at my work. Today ( IM a finance rep.) and with two customers doing business when they called and said they couldnt calm her and could I talk to her !!!!!!!!!! Here I am asking customers with the two finger sign (HOLD ON A MINUTE ) trying to calm down my screaming mother who is saying Im getting out of here !!!! This place is getting ready to close and they lock the door in a few minutes I want to come home with you Jesse! Come and get me or I'll walk from here and these fools can have my stuff!!!
Anyway I know it passes and eventually she forgets it even happened but is this some part of her forgetting reality more or getting worse in this disease or what? The doctor already has her on ( Namenda, Aerocept, buspar, something for sleeping and anxiety, antidepressants a prn as needed and recently started her on a new med for helping with sundowning because she was having more trouble at night about leaving. She also is forgetting how many grandkids she has (five grandsons ) except of course always Brian who helped take care of her. Has completely forgot her great grandson and doesnt know our husbands if they show up alone which they dont anymore. Im just asking because it seems to be shifting agian somehow almost like it was before I placed her and she was so unbearable at home. I want to continue to let the staff there call when she needs to talk to me because they say it helps calm her somehow even though I cant picture that since she usually throws the phone down and walks off BUT it is beginning to HONESTLY BUG ME!!!!! I mean we are paying them almost 6000.00 dollars a month and if I have to do this once or sometimes twice a day it's getting under my skin... but it's still a blessing all in all. I will come to an understanding with them on their part but Anyway try those of you who can help to focus on the behavior part especially my vets Im very concerned this may be a new stage and also she has to start wearing compression stockings for swelling in her feet and legs how do I deal with that???? She hates stuff on her legs as is!!!
Thanks all
Jess22

angel_bear · 08-10-2006, 04:17 PM

sounds to me like she's over her 'best behaviour' bit, which I have found happens when our loved ones are placed ... it seems to me to be a bit of a pattern:

On Placement: Anger, resentment, betrayal, shock

Over the next few weeks: Calm, obliging, happy

On Staying there: Anger, resentment, betrayal, shock

Over the next few weeks: Acceptance, anger, calmness, shock

They run the whole gamut of emotions which is exhausting to everybody involved!!!

One dear gentleman I know who wasn't told he was being placed roams the facility day in day out, night in, night out, looking for his wife. This lasted 4 weeks. Now, he's not asking so much (more on weekends, and only during the daytime now) for his wife, but how to get home. When he asks to go home, he's taken to his room, and except for packing up all his stuff on a regular basis, he's happy with that explanation. It doesn't last long, but he is happy for a short while.

It's not easy .. far from it .. but remember, as long as she is safe, dry and fed, THAT'S the goal.

Hugs

georgie04 · 08-10-2006, 04:21 PM

Oh Jess, how awful, I am so sorry this is happening, especially when you have made such progress over the last few months.

As far as I know, this sort of "chronological backpedalling" is very much a part of the disease. I had a bit of an insight into it recently when I took SIL to the ER. As part of their exam, they gave her a mini-mental. When they asked her what year it was, she replied (as though they were stupid for not knowing) "1964 of course!". Then she managed to somehow snap out of it, and said "no, wait. it's ummmm 2000 and.........6". It is my understanding as the disease progresses she will lose the ability to snap out of it.

It does affect their behaviour, she thinks she is slim and fit (like she was 40 years ago) and is totally bewildered when she can't fit into clothes from that time. So, it may follow if your mother, in her mind, is a young woman with children and responsibilities to take care of, she cannot understand at all why she is where she is - and is doing her darndest to get back.

hugs
Georgie

LuvMyLilDoggie · 08-10-2006, 06:36 PM

Remember too that the slightest little change in her routine or environment can have a HUGE impact. I think if I were you, I'd ask the staff if anything has changed. A new worker, a change in eating time, anything that has changed recently. Could any of the new medications be having a negative affect on her?

I had a child on my bus route who was autistic. Because of the way my route ran, we had to pass up a certain house twice on the way to school. This particular house had a blue garage door with a big yellow smiley face painted on it. I had grown so used to it, I never gave it a thought. One day, my autistic child started talking about death and dying and was acting depressed and agitated. I was trying to think of a way to get this child calmed down. I knew that certain things he saw outside of the bus could affect his mood. When he was agitated at the end of the school day and didn't want to get on the bus I'd say "Come on, R. Let's go see the pumpkin house." (a house we passed every day that was painted pumpkin color). He'd say "Ok." and get on the bus. Well, back to the smiley face...I figured out that R was upset because the smiley face had a frown on it that day. That's all it took to turn this happy loving 12 year old into a depressed child talking about death and dying. I spent most of the ride home talking to R (much like you do your mom) trying to reassure him that the person who did that was probably sad about something but that the smiley face would have a smile on it again very soon. And he accepted that. Three days later, the smile was back.

That day I wondered (and still I'm wondering) how much just a tiny little change, one that you and I might take for granted, can totally disrupt the AD person's day.

Love, Barb

BarbaraH · 08-10-2006, 10:42 PM

Hi Jess,

((((((((( hugs )))))))))) You know we understand.

My mother mentally "youthened", too, and wanted to go home to her parent's home, worried she'd be late for school and that her mother didn't know where she was. One thing I mentioned here long ago that really helped her was that I found 2 photos taken in the early 1940s of mom, her parents, and her brother and sister. I took them to Kinkos, enlarged them to 8x10, and put each in a plastic picture frame (not breakable). She couldn't name the people in the pictures at first, and repeated "It's them...him and him and her. In large block letter, I wrote the names Daddy, Mama, Frank and put that in the front bottom edge of one photo so Mom could read the familiar names. I did the same for the 2nd photo: Mama, Dorothy, Connie, Daddy. Mom was delighted to have those pictures as if her wish had been granted and she carried them with her for weeks.

My mother also had to go to a locked unit and it was not anything closed in that would feel claustrophobic. It was a hospital-like setting, with a large day room, semi-private rooms, private rooms, a dining room, and a nurse's station but it did have locked exterior doors and you had to be let in. The residents didn't have a clue they were locked in and didn't care. My mother thought she was on a cruise because the only time she shared a room was on a cruise to Alaska (I guess that's how she came to that conclusion). It didn't cross her mind to ask how I got onto the "ship" or why the scenery never changed, but she was having a lovely time, everyone was so friendly, and the food was good, so I didn't correct her! About that same time, she began having visits from her deceased sister. Again, I didn't correct her.

If it is suggested your mother needs to be in a locked unit for her safety, she will be in a new area and with a different staff anyway, so that would be the ideal time to move her to a facility closer to your home. Change is change and she'll adapt to where ever she is. You could do with a much, much shorter commute!! You deserve that.

I suggest it's time for your mother's anti-depressant to be administered daily and certainly when she's aggitated as she has been recently. If that's not an appropriate time to give a PRN medicine, I don't know what is!

Seems to me the staff should be able to distract your mother so she doesn't call you so often. You can tell the staff you can no longer get calls at work because you really don't need that disturbance and that's okay. You should not have to endure that even for your mother. Besides, your mother won't care for more than for a few minutes and she'll probably behave just like she does after she actually talks to you.

Take good care of yourself, dear heart. Barbara

P.S. belated thoughts -
Perhaps if it seems reasonable to move your mother closer to you when/if she needs a locked residence, you would make good use of this time to scout out a few such facilities in your area and put her name on the waiting list of the one that you like best.

Maybe the cost would be less, too. I paid only (did I write ONLY??!) $2700/month for Mom's care in the locked unit and $2500/mo. when she was back in the open unit. She'd forgotten how to walk as was in a wheelchair then and they deemed she couldn't escape.

Just a thought.