Mom has been in the AFH for 1 week. The first couple days she was settling in pretty well, I thought. Then her emotions started going up and down like a roller coaster.

From day 1, we were trying to get her more/different medication. Zoloft was no longer working for her anxiety. That's a different story, but finally yesterday her doctor called in new meds. I'm not even sure what they are yet. The AFH picked them up and started them last night.

Progressively, she's called me more and more often. Yesterday she called 4 times; telling me her bags were packed, cussing and ranting that I have to take her home, she's fine, has no problems.

I visit every morning for 2 hours, yet she never remembers that I've been there. I took her crochet and coloring books one day and she called as soon as I got home saying, 'how could I bring her things and drop them off without even saying hello to her.' I was there for 2 hours!

While I was there yesterday, it was just stunning. She was angry and ranting about what a horrible place it was, how awful they treated her, the manager yelled at her and the staff stole from her. I swear, in the middle of this tirade she turned around and her face softened and she went into a litany of praise. They were the sweetest people, her room was great, the people were great, she loved the food, they gave snacks constantly.

I was just shocked, how quickly this rage comes and goes. It's almost like she has no control of her thoughts or words at all.

My question is.......will this continue or will the new meds help. She honestly believes that if she goes home, her life will be as it was 10 years ago. Everything will be back to normal. She just needs to go home.

I've warned my brothers, but when they hear this sobbing, reasoning, I wonder if they'll believe her. They haven't seen the rages, like I have.

Do we have to just wait this raging out....or do meds help....will she eventually adjust to this place. Even the AFH says she absolutely refuses to shower. I thought they'd cajole her into it, but she won't.

Another week with no shower. Sheezzzzzzz........

I can't wait to go see her this morning, oh I hope these meds have made some difference.

Dear Sandy,

Meds will help. She will improve, she will let them shower her. Meds take time to kick in. Hang in there. You did the right thing. No second thoughts. Do NOT take her home!
Good luck! We're all rooting for you!

Love,
Martha

Oh thank you thank you, Martha.

I think I just had to hear someone say the meds would work. Zoloft is just useless now, at least her dose. The doc did say that we would see a marked improvement over the next 2 weeks. Oh, I hope so. All the other ladies are so sweet. They roll their walkers back to her room and try to talk to her all day long. If she'd just give a little, she'd like them.

I swear, I jump everytime the phone rings.

Sandy,

I 2nd everything Martha said. You know full well that bringing your mother to your home would start that awful merry-go-round again and if you took her to her home, the dangers would be incomprehensible. Your mother's brain is just fixated on "home", as my mother's was. I just told my mother that some really messy repairs were being done and she could go home when that work was finished. I told her a water pipe had flooded everything. I used that same excuse for weeks and then Mom forgot to be unhappy.

Say what you need to so your mother is relunctantly willing to stay. Your car has a flat, you have a meeting, you have to take the dog to the vet, whatever! She won't know you didn't come, that she didn't go home for a visit, or not. Sad, but true.

Don't back down. Your mother is where she needs to be. Whew!!!!

(((hugs))) Barbara :)

Sandy, I hate to say this but maybe it would be best for your mom if you cut off contact with her-at least for a few days or a week. No visiting or talking on the phone. I've heard from many people that it seems to be better for the AD person to adjust to NH's and such if there's no contact at first. Of course I don't know because I'm not in that situation myself yet. But that may be something you want to ask G about.

I hope your mom adjusts well to the new meds (and quickly too).

My dad does the same thing with not showering. What a PAIN! And STINK! He doesn't think he needs a shower EVER! But when he was with me, I used to tell him "Ok dad. We're going to the grocery store in a little while. Time for your shower". If I ever asked him to get in the shower, that left room for him to decide if he was going to or not.

That scheme worked for my sister until recently. He won't shower for her now so I doubt if he would shower for me. But he will shower for my sister's husband if he tells him he's going to take him somewhere.

Go figure. Sometimes I think this awful disease confuses me as much as him. :confused:

Love, Barb

Well, Mom hadn't called by noon, so I think I was holding my breath a little. Finally headed down there. I swear, my head is throbbing and my stomach hurts every time I go down there now.

G was in the living room and said, "We're having a really good day!" I'm thinking..........Oh yeah, right!

I'm tellin ya, she was "sweet as pie." I could hardly believe it and felt like jumping up and down! I was prepared to see NO results for 2 weeks.

She only asked to go home once and when I made an excuse, she said, "Oh well, I'm sure I'll go later. This is a nice place."

I'm tellin ya, that was the biggest relief I've had in weeks! I was totally stunned. She was saying the same things over and over but she was smiling and happy. No tears or cursing or raging at all. Her eyes were their natural pale pale blue. Oh, I'm telling you, it was such a relief. Just awesome.

I don't know if she'd taken a shower but I think she will in this mood. She was showing me all the clothes "SHE" had brought, like she had packed them herself. And she took them all out of the bags and put them away while I was there. They've been in and out of that bag about 20 times in the last 7 days.

She told me, "I'm gonna be a good girl. I've learned that if you're a good girl, they treat you a whole lot nicer." Cracked me up with that one!

Yep, Barb, when Mom was with me, the only thing I found that worked was to put a towel and face cloth prominently in the bathroom. She'd come out and say, "Do you think I stink." I'd say, "No, you asked me to get you a towel, said you wanted to take a shower."

She'd say, "Oh, that's right. Okay." She wouldn't dare admit to forgetting that she asked for a towel. I wish I had thought of it sooner.

GREAT! What a relief!

I am so happy for you. My heart felt for you because I have gone through the same thing with my husband. He is not in nursing home but was in the hospital. They were trying to get his medications regulated because the ones before stopped working. He would call and beg me to pick him up, get upset, and say all kinds of things when happening there and he was scared. I would just shake after getting off the phone and it was the same visiting him too. They kept telling me to try and not worry, just ignore what he was saying. I kept thinking I cannot handle this if it is always going to be like this, it hurts to much. But he did come around and became very pleasant and passive. The meds finally took hold and calmed him down. So there is light at the end of the tunnel, and there will probably be some dark days, but for now enjoy the good ones.
Diane

And just on the tail end of things .. be prepared for erratic behaviour for about 6 weeks, the good girl will come and go as the med's kick in. It's a HUGE new change for her and that brings about erratic behaviour .. AD patients do NOT cope well with change but they DO adjust .. you just have to be patient.

If you find she's getting over the top again, stop visiting for a few days, let "G" sort it out, she's trained in these things .. your visits remind your mother of her 'other' life, and that's what's making her so insistant on going home .. your her reminder of home, which, if you think about it, is really sweet.

By the way .. the Nursing Home I now work in is putting me in the special care wing for the week because I'm "experienced" in Dementia .. *chuckle* .. yeah ... I've learnt HEAPS !!!!!!!! I'm also thinking of going for the job of "Dementia Champion" which means doing in-house service for families of residents and staff members .. I think between all you guys here and my own studies, we could teach the world a lot .. why not start with my place? LOL

Hugs to all

Sally

(PS: My ex-charge who was a screaming, biting, kicking, punching little banshee settled into her nursing home within 3 weeks ..... her new med's kicked in (anti Psychotic med's) and the farce of being 'normal' was no longer expected .. hang in there, it DOES get better)

Sally,

I'm so glad you mentioned not visiting every day. Several others have said that it might be wise. And a few have said that the nh requested it the first week. G has never told me anything about visiting one way or another.

Sometimes I just feel like staying home one day so badly. Then, the old guilt creeps in; will the nh think I'm a bad daughter, will mom think I'm a bad daughter, will family think I'm a bad daughter.

It's like I have to have permission to NOT visit every day.

I thought the meds thing would be up/down for a couple weeks. So I'm ready, if I see that angry woman again. At least I've seen a little of the calmer person and hope she stays that way more and more as the weeks go on.

I'm very proud of you, Sally. Look how far you've come from a tired caregiver to an outstanding Career! That's great!

I give you my persmission to stay home! :D

You can never be seen as a 'bad daughter' by any rational person. You went above and beyond the call of duty trying to make it possible for your Mom to stay home. Didn't a light go on when you saw how difficult she was being with the NH staff, not only with you? You have to go from 'what did I do wrong' to ' I did the best anyone could have done, and I'm proud of it!'

Go every 2 or 3 days; Mom will not remember. She will tell everyone nobody ever comes. My Mom does that even though my brother goes almost every day. She also says no one ever calls, but we do. She doesn't remember, and it's also a way of feeling important - my bad family did this to me (took car away, made me move,etc) - in other workds playing the poor poor victim. Anything to feel like a normal person who has something to say!

Relax now and enjoy your days, so different from just a week or so ago!

Love,

Martha

Okay Martha!
I'm going to stay home today, relax, read. And tell myself, Martha said I could!

I was reading in that book "The Forgetting," the other day. And it said that Caregivers develop something known to Doctors as, "Caregivers dementia." Wholly cow!

But it's all those irrational thoughts we have, irrational expectations that we put on ourselves; we can take care of it, we can stop it/cure it, we can handle EVERYTHING and it's all our fault if they don't get better!

Been there, done that. You're right. It was such a relief to see that she behaved the exact same way in the NH as she did here. I just knew I was doing something wrong.

I'm gonna take some deep breaths today and stay home.....

Thanks all!

I am going to mention something here, knowing that it is anonymous and won't go further. In Fall (2004) before Mom got an Aide to stay with her for part of my work day, and I was in a constant state of fear and apprehension about what would happen to her while I was at school, I was so deeply in thought that I got off my subway train one stop too soon to make the change to my other line I needed. Not noticing, I walked down the stairs and stood there in shock because that station was entirely different and I couldn't figure out why the stairs down to my other subway line were not there. Finally it dawned on me that I had to go back up and wait 10 minutes for the next train, take that, and then change at the following station (thus getting home even later, with even more danger to Mom.)

I sat on a wooden bench and worried. A train approached and one horrible thought came into my mind: if I jumped in front of this train, all my worries would be over.

I never told this to anyone but my brother. That was when he and my sister agreed to get a home health aide for Mom.

The background was:

a day Mom disappeared from 7 AM until 4 PM with no recollection, not even a made up story about where she had been.

a day she got on a bus to go to Manhattan, got there, didn't know why she had gone, got on a return bus over the bridge to Queens and didn't know which stop to get off... got off "somewhere" and wandered around for hours. Finally went into a bar asked for a drink of water, and the smart bartender called a taxi for her and told him where to go (mom had ID on her!)

Several burnt pots and pans and a toaster oven fire.

People on the street coming up to me telling me 'your Mom really can't be alone any more! I saw her putting her key into the door of a building a few blocks from here.'

I was so bogged down in worry and sleeplessness (Mom woke me up all night long) that I really think I was paranoic.

iI didn't jump in front of the train but my having had that thought scared me.

Yes, caregivers dementia. That was it.

I am so happy that both Mom and I are in safe places now.

Love,
Martha

It's like I have to have permission to NOT visit every day.
Sandy, I'm so happy you've decided to stay home at least for a day. Once you give YOURSELF permission to not visit every day, you'll start to feel the grip of guilt loosening. That's not to say you won't feel bad once in a while about not visiting. But you must do whatever you need to in order to stay healthy yourself. You're close enough to visit often if you wish and maybe shorten your visits on days that you're busy. I wish my dad was so close. He's with my sister 700 miles from here now and I haven't seen him in 8 months, almost nine. And when he comes back here, God only knows how long he'll stay with me (last time was 15 months). So I go from everyday caregiving to no caregiving. I feel guilty when he's here for wishing that I had some time away from him. Yet I miss him when he's away.

Love, Barb

Sandy,

Yes, it will do you and your mother both good for you to back away a little. Go visit maybe 2 days a week and live your own life the rest of the time. For this period of medication adjustment, I'd say stay away for a week. You can call G and tell her of that plan and why, and call at other times to check on your mother, too.

You mentioned that your mother doesn't remember that you visit at all. In the NH where my mother ended up, she had a roommate who was as ditsy as Mom was. The roommate had a large family and had frequent visitors but also didn't remember any of the visits. She'd complain to each visitor that no one ever came to see her. The family members were getting irritated with each other, until they had a meeting and discovered they'd all been visiting. Their solution was to put a clip board on the wall behind the door and each would sign in with date and name. The next visitors who signed in could read who had visited last and then talk with their Mom about that person's visit. It saved lots of family dismay and anger when they realized their mother was an "unreliable historian", meaning her answers and complaints were likely to be completely wrong.

On another subject, you've heard about folks who survive crashes where others died having "survivor guilt"? I think there's also "Caregiver survivor guilt" - you no longer have the draining responsibility of caregiver, but have a hard time letting go and feel guilty that you aren't still doing your job as you "should". Tell that negative little voice to hush!! Refuse to listen. You who have delegated the care to others have done what's best for your loved one. It's just that simple. Be at peace.

Group hug!! Barbara :)

MarthaH,
I'm so glad you and your mother are safe. I've had those type of thoughts before (from different kinds of reasons) and it is really scary. It's especially scary when you know how short a step it is between thinking the passive thoughts and beginning to have the more active planning thoughts. I know it's not pleasant to even recall being at that point - but you may help someone else avoid getting that stressed before getting caregiving help. Hugs, N2E

Martha, I can understand those thoughts, totally. We just become so flooded with a multitude of conflicting feelings that we wouldn't normally have. It's just overwhelming sometimes.

But.....I'm so glad you're here! You've helped me many times and countless others. I agree, I'm happy that it turned out well and both of you are in a safe place!

Barbara, that is a great idea! The record of visitors. For more than a year, each of my brothers and me thought none of the others were visiting mom in her home. She would always say that no one had been there in months. When we finally got together, we learned that all of us visited each week, just on different days.

Barb and all, I know that I just can't keep it up. I have to stop going every day and it will probably be best for Mom and me. I didn't go today and she called at noon; for 45 minutes she cussed and ranted and called me names and put me down. Finally, she was screaming and they heard her and took her to her room. I was trembling when she was done and finally decided, I'm not going to do this anymore.

If she calls, and is not calm and medicated, I'm going to hang up. It sounds awful, I know that, but I just can't do it anymore. I can't hear it anymore. She doesn't hear anything I say and has no memory of the calls later. So I'm not going to take part in this part of it. After awhile, I feel like I'm perpetuating it by trying to reason with her. There is no reasoning and it's a waste of time and leaves me with hurt feelings. I just won't do it again.

I feel better already, just saying it. I hope the meds gradually calm her in the next few weeks and I'll wait for that.

Sandy, you are learning, and so fast! Star pupil! You are exactly right - you can choose peace instead of that!

Love,

Martha

Hi Sandyspen,

That is good that you have learned that sometimes you just have to let go - sometimes for just a while and sometimes, for good! If my mom is being mean to me on the phone, I just make the conversation short! She does not yell too often, just says sarcastic things and disagrees with everything you say. It is not pleasant.

I can take it more easily when I am at their house, but not on the phone at mine!!! I guess that I am sort of prepared for it the other way.

In most NH, Alzheimers places here, they will not let them talk on the phone. Do you know if she dialed the phone??? If you call - they say they will go and get the patient, if ambulatory. But, not let them call out or have a phone in their room.

I also think it is good (for you and your mom) that you stay away for a few days, at least.

Take care and rest.

Love, Wannabe

Wannabe,

Yes, she used to do that to me when she lived alone. She could never remember that I had been there to visit her. She would threaten to kill herself if we kept leaving her alone. When I brought her to live with me, it was fine for many months then she was making the same threats if we didn't take her back to her place to live alone. No reasoning.

No, she doesn't have a phone in her room. She wants one, but I can tell you, that isn't going to happen. I think she's sneaking back into the office when no one sees her. They are allowed to use the phone anytime they like. All the other ladies are very pleasant, and they may not have had this problem recently with any of them.

I'm going to call G this morning. Tell her about the phone and suggest that I'm not going to visit as often. See what she thinks. I'm hoping, since she's been doing this for 16 years, that she's had someone as rowdy as my mom previously!

Oh I think you can bet she has! ;) My grandma was a sweet old lady who loved her grandchildren very much. She even raised one of her grandchildren and one great grandchild. But when AD took hold of her, she was totally unpredictable! Once, she wanted to go home to her mama who'd been dead for about 40 years. I was the only person with her. I told her that her mama was busy and said she would come get her later. She threatened to throw me out the window if I didn't let her go. She cussed and screamed and ranted and raved and carried on for what seemed like HOURS! She even pushed me! And then just as quick as she turned into this lunatic, she went back to my sweet grandma.

That's when I found something that would always calm her down for me. I had forgetten about it until just now. 21 1/2 years after her death and I remember this now. She'd be yelling and I'd give her a sarchastic look with a smile. I'd tilt my head to one side and put my hands on my hips and bend one knee and say "Oh Grandma! You KNOW you love me!!!!!" She'd burst into a laugh every time! It never worked for anyone else but it always worked for me. :)

Thanks for helping me to remember that. A very sweet memory amongst the pain of AD.

Love, Barb

Barb, What a sweet story to remember. I may try it, I'll try anything.

I called G this morning and she said YES, that would be a good idea, not to visit every day. What a relief!!!!!! I was so afraid she'd think I was awful. She said mom does pretty well in the morning but gets very agitated in the afternoon and evening.

She said it would still get better when the new meds are in her system for longer, but don't be surprised if these agitated times recur occasionally.

I know if I have a little more time between her tirades, it will be easier for me too.

This morning, (the second day to stay away) I can actually feel myself relaxing a little.

Thanks to everyone for your patience in listening to all this.

Do you know how many people you've helped by starting this thread? If it weren't for you, I may not have ever recalled those memories of the laughs my grandma and I shared in all the turmoil. THANK YOU! This means a LOT to me.

It gets easier. Staying away I mean. All you needed to know was it's perfectly normal feeling the way you do given the circumstances and that others feel or have felt the same way. You're starting to relax now. GOOD! That means you're starting to let go of the guilt.

You've done well!

Love, Barb

Barb, What a sweet story to remember. I may try it, I'll try anything.

I called G this morning and she said YES, that would be a good idea, not to visit every day. What a relief!!!!!! I was so afraid she'd think I was awful. She said mom does pretty well in the morning but gets very agitated in the afternoon and evening.

She said it would still get better when the new meds are in her system for longer, but don't be surprised if these agitated times recur occasionally.

I know if I have a little more time between her tirades, it will be easier for me too.

This morning, (the second day to stay away) I can actually feel myself relaxing a little.

Thanks to everyone for your patience in listening to all this.

You may want to consider making your visits in the morning as well. When my FIL was adjusting to his meds after exhibiting violent behavior his NH recommended we visit in the morning and make the visits short.

Apparently, "sundowner's" sets in later in the afternoon (obviously) and the long visits by his girlfriend in the afternoon made him agitated when she left. Also, he wanted to sleep more with the new medications and napped in the afternoon. Just a thought.

Jane

Just a note,

When I go to my parents house to help them. I always get there by 9:30. No earlier, because of rush hour and because my dad sleeps late. We get our "work" done in the am and go to lunch. Then, they usually take a nap. I finish up and leave, usually while they are sleeping! It does seem to work best this way. If they do not have a nap, they are not very alert or thinking very well.

Take care all.

Love, Wannabe

Jane and Wannabe,

I think you're right. I did visit around 10am but would stay till noon. G says she's better in the mornings and worse in the afternoons. I think I'll try for 9:30 or so, and maybe stay for an half hour instead of 2 hours.