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Day One and no relief
Posted: Friday, February 8, 2019 10:05 PM
Joined: 1/28/2019
Posts: 22

So we got mom to go to respite care and yesterday when we finally got her there she was really quite impressed with the place and was willing to give it a go. We think she may have figured out that this may not be temporary and none of us are giving her an end date, we're just saying this is to give her daughters a break and try to figure out what is going on with her and get her back on her feet so she can manage being home alone.  We thought maybe, just maybe we'd be okay.  But she just called and was stunned we hadn't gone somewhere for a couple of days and that no one told her we were "back" and she was pissed.  Hung up on my sister.  We both know it's the disease (it was quarter of 10pm when she called) talking but even if she will probably forget, it's hard for us.  This whole thing is so darn new to us - and it's like it's a big secret club and we don't have the decoder ring to know the code.  Mom can be completely lucid at times and know exactly what is going on and understand why we are concerned - and didn't fight us to give us the respite (and her therapist knew to frame it as "giving your girls a break" because mom is all about taking care of everyone else.) but then the disease grabs her and it's this horrible angry stuff and we feel terrible again. As I said in another post, this comes on top of losing a nephew to cancer in Feb and our dad in July.  We've spent two months staying with her and sleeping on a couch and we're beyond exhausted.  We know our "real mom" would commend us for getting her somewhere where they can help her, but when this other "mom" surfaces, it's so hard to not take it to heart and feel horrible.  The AL facility is lovely and we just keep hoping we can keep her there but now I'm questioning my decision to put a phone in for her to call friends if this is the result.  It's a couple of hours later and she hasn't called back so I'm hoping she's gone to sleep and totally forgotten about it.  Question is, how do we forget?
Posted: Friday, February 8, 2019 11:19 PM
Joined: 11/13/2014
Posts: 2117

I'm so sorry. This really hurts I know. Do we forget? No, and it's all heartbreaking. 


Posted: Friday, February 8, 2019 11:28 PM
Joined: 1/28/2019
Posts: 22

Thank you, it does help to know we're not alone.  We know deep down we're doing the right things - people are telling us that as well - and we know that at some level mom knows we're doing the right thing and what she would've wanted but the reality is a horror show.
Posted: Saturday, February 9, 2019 12:57 AM
Joined: 7/11/2012
Posts: 93

Hi Cam,

I am so sorry that you're going through this, Alzheimer's disease is just a long road of questioning, guessing, anger, sadness, and continual changes.  There are some moments of laughter, some of the things they do, or say are just funny, we enjoy those moments.

But to your current situation.  My mom was mid stage 5 when we put her in an assisted living.  We didn't tell her until the day of the move, and we rationalized (I know, lol) it with her saying that her doctor said she needed to be there, not stay, sometimes the word you use is very important.  And that her doctor would decide when she was up to leaving.  We told her that he said due to her balance issues, the recent falls, and some confusion, he felt it would be best for her to be there for awhile so that medical care and rehab would be available to her 24/7, plus lots of fun activities to enjoy.  She accepted that.  For about 3 days.  We did not have a phone put in her room, because who knew who she would call, and when.  She did have her cell phone, but most days she wasn't quite sure how to use it.  However, on the 4th day she called me, on her cell, to tell me that she was not staying there forever, and that she was going to call her lawyer if I thought she was!  She was NOT HAPPY.  However... she didn't an attorney's name or number to call, did not know how to find a name and number, and I had POA.  She ended up hanging up on me.

We continued after that day as normal, visited her 2-3 times a week, just for an hour or so.  I should mention that we did not visit her at all for the first 2 weeks, that seems to help with the initial adjustment.  When we did visit, we always came in with some kind of little gift for her, candy, chips, ice cream, just a little fun something to start off on a good note.  Lots of subjects to be avoided, I found myself thinking of what I was going to say and the ramifications of the subject before I brought it forth.  Very tiring, but it does become second nature after awhile.  We learned diversionary tactics very quickly and have become quite expert at it.  It's been 6 years, and for the last 2 years we've moved mom in with us, I didn't like the memory care she was moved into so we brought her with us.  She is now is the early stages of stage 7, and we just brought in Hospice.  Not that she is bedridden, or not eating, but enough significant changes that we felt an assessment was warranted and she was approved.  

We've found that trying, sometimes multiple times, to change the subject when they become agitated or angry, is usually far better than trying to explain.  Or we would suggest a walk around the facility, or outside, just to change the environment.  That usually worked pretty well.  Or ask what she'd like us to bring for her at our next visit.  My mom had a dog at home that we would occasionally bring in to visit with her.  I wasn't quite sure that would actually be a good thing, but she did love seeing him when we did!

I hope it works out well for you and your mom, its never easy and is very often sad and heartbreaking.  But, my mom still smiles and laughs enough that I feel we're doing our best for her, so for now we're good.  Take care of yourself, too!

Posted: Saturday, February 9, 2019 1:00 PM
Joined: 12/4/2011
Posts: 17061

I would not assume that it is the disease. She might just be very angry with you because she kind of knows what is going on.

This perspective does not make it are in a tough place.

Posted: Saturday, February 9, 2019 5:46 PM
Joined: 12/15/2011
Posts: 3908

Cam, It's awful.  My mom ripped into me because her doctor told her she had dementia and she claimed that me and dad and my husband had all turned against her, didn't love her.  She said terrible, hateful things to me that I had to make myself forget otherwise, I would have to wonder if that was really how she had always felt about me.  This went on and on for over 2 weeks and then happened intermittently over the last few years of her life.  I had never been around anyone with dementia before that.  Not my grandparents, or any other relatives.  

Then there was the time I had an emergency appendectomy and she called me once I was out of surgery approximately every 10-15 minutes and would not stop ringing the phone although I repeatedly explained I was fine and just needed to rest.  If it went to VM she would immediately dial back.  I think she called me in the hospital upwards of 250 times on the night of my surgery and started up again the next morning. My father did nothing to help, took no control of her.   The nurses could not wait to get me released from the hospital as the constant calls were annoying them to no end.  This resulted in me getting discharged by. 7:30am!  (Actually, that. part was good as once home I unplugged the phone and went to sleep.)

I was weak then and thought I needed to cater to her, keep her happy and keep my dad happy.  But I learned that you cannot cater to this disease.  You cannot control it nor stop it nor make the patient happy.  It simply exists and all you can do is protect yourself and make sure your parent gets the care they need.  Your mom is in a safe place where all of her needs are being met.  If the phone has become an issue, disappear it.  Keeping your mom at her house and. you  sleeping on the sofa at her place is NOT a solution and I think you have all figured that out which is why your mom is now in respite.  You have done the right thing.  Your mother gave you life to live it.  Things are not going to get better for your mom, it's a one-way ride and she will go downhill as she follows the arc of this disease and there is absolutely nothing you nor anyone else can do to stop it.  All you can do is make sure she is safe and cared for and then, for her sake, take care of yourself.  

So how do you forget the horrible things she has said?  The guilt?  The blame?  You choose to. take action to protect yourself from it in the future including hanging up the phone, walking away from her when she is "like that" and anything else you need to do to protect yourself.  And you ALWAYS ALWAYS remember it is the disease that is talking, not your mother and it is OK to walk away from the disease.


Mimi S.
Posted: Saturday, February 9, 2019 7:56 PM
Joined: 11/29/2011
Posts: 7036

Hi Cam

From your library ask for a copy of any book by Naomi Feil with the word Validation in the title. It's not an easy read but worth the time. Ask if staff are trained in her Validtion method. In my opinion, all staff should be.

Adjusting will take time.  Good luck.

Posted: Saturday, February 9, 2019 9:23 PM
Joined: 7/6/2014
Posts: 1335

YOU DON'T.   When your heart is involved ONE day is not ENOUGH TIME .  3 MONTHS is  a more realistic approach to settling in for A LOVED ONE. You need to remember that their mind is  BROKEN AND BEYOND REPAIR---it will never return or be the same again.   

You may have to re-asses the phone issue.



Dahlke (Cynthia)
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