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Just Hateful
ddchristian72
Posted: Sunday, October 6, 2019 10:43 AM
Joined: 1/29/2014
Posts: 5


First time posting....my Mom was diagnosed with Alzheimer's 6 yrs ago at the age of 62. My folks retired early to do some traveling and enjoy as much time together as they could. For the most part my Mom had the same symptoms that most people associate with Alz and dementias and we have learned to cope.

 After retirement my folks spent every winter in sunny AZ, last winter included. I knew by conversations with my Dad the trip wasn't going well. My Mom stopped wanting to participate in fun outings with friends and just wanted to sit and play games on her tablet. She refused to exercise and began drinking more and more. She also became very jealous and territorial over "things" and my Dad.

By the time they came home in April this year I could tell my Dads health had really taken a toll mentally and physically. In a nutshell the stress of caring for my Mom almost killed him, he spent the better part of the past 3 mos in the hospital and ended up having major surgery from which he is still recovering. The surgeon says 6-12 mos process.

While my Dad was sidelined as a caregiver in the hospital others had to step in. I knew Mom had declined and her personality was very changed but I had no idea how bad the situation was until I became that caregiver.  She becomes explosive and aggressive, just flat out mean over small things. Her ability to rationalize is completely gone now. Other family members (her favorite brother along with Moms lifelong BFF, my oldest son) all came in and tried helping. No one realized how bad things were, my Dad had been dealing with this all alone. My guilt is overwhelming at times because of that.

As a family we made the decision to place Mom in a local NH, where we know she is well taken care of. They recommended taking her for a medication evaluation which we did and they did change some things...but nothing is different. She is still mean and hateful to those closest to her but pleasant to the NH staff. Getting her in the NH was an ordeal and at first she called us at least a dozen times a day demanding go home. She would send scathing emails one minute then another 10 minutes later that broke our hearts. This has been a heartbreaking and exhausting experience for the whole family but especially for my Dad. He wrestles with the guilt of placing his 68 yr old wife of 48 yrs in a NH so young. 

You may ask why we didnt just have home health care come in....we tried but my Mom wasn't having it.  

So here we are today, no one we have talked with has not encountered these types of behaviors and we are at a loss. The local support group doesn't have anyone with this experience either. The leader is wonderful and helpful but can only counsel to what he knows and offer other tools to cope. We hate that my Mom is in a NH even though it is a great place and is good for her but we still wrestle with wanting to try and bring her home for awhile longer. My Dad still hasn't been able to go see her, he isnt emotionally there yet. 

We are desperate to find folks who are going through similar issues with their loved ones behavior. Just talking with someone going through similar stuff would be helpful. 


CaringMate
Posted: Sunday, October 6, 2019 11:01 AM
Joined: 9/5/2018
Posts: 44


dd...welcome to the group that no one wants to belong to.  You are in good and safe hands here and please know that you are not alone and what you are experiencing with your mom is not uncommon.  With that being said, just because it is a common behavior doesn't make it any easier to deal with.  The behavior you describe sounds more like Frontotemporal Dementia (FTD) which is known to strike at an earlier age than Alzheimer's and is also much more aggressive and angry.  I lived it as a 24/7 caregiver for my partner and it took many years before I was able to get him properly diagnosed.  Many doctors don't even know what FTD is, let alone diagnose it.  My recommendation to you is to do a little research yourself and look up the symptoms of FTD and see if they fit.  If you find that you are checking the boxes, take that information to a qualified neurologist and get your mother evaluated for it.  While it is still dementia, it presents with different symptoms and there are medications that can be prescribed to help with the anger and aggression.

I feel for your dad...after ten years of non-stop insanity at home, my partner passed away last November.  Two months later, my body collapsed under the stress and strain of being his sole caregiver for over a decade.  I too was told it would take many months for my adrenal system to return to some sense of normal...and hopefully it will.

So, in a nutshell, I would say start doing your homework and learn all that you can about FTD and then find a qualified doctor to start working with her and place her on medications that will at least temporarily help with the symptoms.  My partner was placed on Celexa which is an anti-depressant, but works well for FTD patients to help ease the aggression.  My prayers are with you and your family and I hope this information is helpful.

Elaine


Sayra
Posted: Sunday, October 6, 2019 11:48 AM
Joined: 8/10/2016
Posts: 1598


Welcome   You will find all kinds of people here going through what you are dealing with.  Hopefully they will be along to talk with you and share their experiences.  Keep hanging out and reading and you will learn.  

I always say no one understands unless they have lived with it.  Don’t feel guilty about it because you can’t know unless you have walked in those moccasins.  My mom has little memory issues, can talk and act super aggressive, cannot balance her checkbook, has wasted almost all of my dad’s hard earned money, reasoner totally broken - it is impossible to reason with her about even obvious things, acts like strangers are friends, invites herself to the neighbors, asked a man she does not know to marry her twice and I imagine she will ask him again.

I had to move out of my home and buy myself another home after her living with me 15 years.  Rarely have heart palpitations or stomach spasms now.  Still have down times from dealing with the wearisomeness of dealing with the unreasonableness and aggressiveness.  My hope is she really has no control over this.  Sometimes things seem so purposeful, I hope they aren’t.

My mom has no diagnosis as she is totally medically noncompliant.  Had a stroke in March, had very high blood pressure but says she don’t have anything wrong that doctor and RN made it up.  Refused all medication.  Was very aggressive at hospital.  My sister next to me started trying to reason with her.  I suggested to my sister that she not say anything.  She said to me that is the problem you were quiet for 14 years.  She tried probably for 30 minutes.  Thankfully she finally gave up and apologized to me later.

So don’t feel bad about anything.  You and your dad will now be able to work together better hopefully.  Hope your dad has a good recovery.

Take care


gubblebumm
Posted: Sunday, October 6, 2019 12:35 PM
Joined: 7/12/2017
Posts: 1310


There is more than one person here, you and your dad count as well.  You deserve health, rest, some joy, relaxation and peace. 

If she is safe, comfortable and doing well with the staff, that is what we want.  If she loved your dad, would she want him miserable, sick, having an early death because of her illness? 

PS no one thinks having someone come into the home is always best.  So no judgement from anyone here for having to do what you did to keep EVERYONE safe, healthy, able to sleep,

If your dad is willing, have him check out the spousal dicussion board on this site, its for couples, and their very special difficult journeys, he will see he is not a bad person, but that this is best all around


harshedbuzz
Posted: Sunday, October 6, 2019 2:12 PM
Joined: 3/6/2017
Posts: 1684


ddchristian72 wrote:

First time posting....

Welcome. I am sorry you have a need to be here, but so glad you found us. 


my Mom was diagnosed with Alzheimer's 6 yrs ago at the age of 62. My folks retired early to do some traveling and enjoy as much time together as they could. For the most part my Mom had the same symptoms that most people associate with Alz and dementias and we have learned to cope.

 After retirement my folks spent every winter in sunny AZ, last winter included. 

What a wonderful gift your dad was able to give them both- some semblance of a proper retirement. That is huge. 


I knew by conversations with my Dad the trip wasn't going well. My Mom stopped wanting to participate in fun outings with friends and just wanted to sit and play games on her tablet. She refused to exercise and began drinking more and more. She also became very jealous and territorial over "things" and my Dad.

I had this situation with my parents as well. Almost 20 years ago, in retirement, they moved to the beach and then started to spend the winter at their cute little Golden Girls house in FL. Early on, they had a blast but over time dad became more unfiltered and his behavior more off-putting. Drinking had been an issue for dad once he cut back to part time in his 60's, but once he hit the early stages of dementia he drank enough to end up with an alcohol-related dementia, Wernicke-Korsakoff's Syndrome, in addition to Alzheimer's. It's a testament to how unpleasant dad was that not a single friend or neighbor asked after him when I went to sell their homes; everyone asked me to remember them to my mom. Despite this, dad talked about FL as if he had a full and active social life and was life of the party there while railing that he was going back. 

By the time they came home in April this year I could tell my Dads health had really taken a toll mentally and physically. In a nutshell the stress of caring for my Mom almost killed him, he spent the better part of the past 3 mos in the hospital and ended up having major surgery from which he is still recovering. The surgeon says 6-12 mos process.

While my Dad was sidelined as a caregiver in the hospital others had to step in. I knew Mom had declined and her personality was very changed but I had no idea how bad the situation was until I became that caregiver.  

Same here. While in FL my mom developed an autoimmune hepatitis and nearly died. Had a neighbor not stopped by to see her and recognized jaundice, she would not be here. I had to fly down for a couple weeks and then send one of their granddaughters as dad, pre-dx, would not agree to caregivers in the house. Part of the problem was that mom was very tight-lipped about dad's antics; I'm not sure if it was some warped sense of loyalty on her part or trying to protect his reputation as he and I never got along well. 

She becomes explosive and aggressive, just flat out mean over small things.

This is pretty common. It sometimes happens when someone who has always been difficult has their personality distilled by the disease process making it hard to see it in the context of brain damage. Other times, the disease progresses in a way to destroy the gentle nature of a kind and loving individual which must be devastating.

 Her ability to rationalize is completely gone now. 

Higher order thinking, reasoning and executive function are some of the earliest skills lost. Sometimes, when a person has been quite bright previously, they can seem much less impaired than they are because of cognitive reserve.

Other family members (her favorite brother along with Moms lifelong BFF, my oldest son) all came in and tried helping. No one realized how bad things were, my Dad had been dealing with this all alone. My guilt is overwhelming at times because of that.

No guilt. You did the best you could operating on the information you had at the time. I'm sorry for you dad's situation; my mom was similar even when I called her on the craziness. I think she was like the frog in the pot of warm water set over an open flame. She was too "in it" to recognize the water was starting to boil. 

As a family we made the decision to place Mom in a local NH, where we know she is well taken care of. They recommended taking her for a medication evaluation which we did and they did change some things...but nothing is different. She is still mean and hateful to those closest to her but pleasant to the NH staff. Getting her in the NH was an ordeal and at first she called us at least a dozen times a day demanding go home. She would send scathing emails one minute then another 10 minutes later that broke our hearts. This has been a heartbreaking and exhausting experience for the whole family but especially for my Dad. He wrestles with the guilt of placing his 68 yr old wife of 48 yrs in a NH so young. 

Dad was pretty angry and anxious in stage 5-6 of the disease. It was a terrible time for all of us. We were able to keep him home for a time, but even with help, caregiving was killing my mother. She neglected some health issues dealing with his and lost the vision in one eye which cost her driver's license and independence. But at least she is compliant with staff; that is huge and suggests she might, at some point, settle down a bit. I was shocked that dad did. 

You may ask why we didnt just have home health care come in....we tried but my Mom wasn't having it.  

I would never presume to ask. Your family would know better than internet strangers whether HHC was the best option for your particular situation. 

For us, it was a stop-gap that was very expensive and didn't buy my mother the kind of rest she needed- dad was up at night and would not cooperate with hygiene, eating or medication. 

So here we are today, no one we have talked with has not encountered these types of behaviors and we are at a loss. The local support group doesn't have anyone with this experience either. The leader is wonderful and helpful but can only counsel to what he knows and offer other tools to cope. 

Bummer. Mom's and my stories about dad's antics were generally the most extreme at our IRL group, but we felt supported and our moderator had previously known other families who dealt with a presentation like dad's.

We hate that my Mom is in a NH even though it is a great place and is good for her but we still wrestle with wanting to try and bring her home for awhile longer. My Dad still hasn't been able to go see her, he isnt emotionally there yet. 

This was really hard for my mom, too. Dad saved his worst for her. The first 4 weeks or so, I took her to any visit and made sure we stayed in a public area where dad was more likely to be on his best behavior. It also helped to bring him treats. 

We are desperate to find folks who are going through similar issues with their loved ones behavior. Just talking with someone going through similar stuff would be helpful. 

Dad's gone now. But those days are kind of seared into my brain. You are not alone. 



ddchristian72
Posted: Sunday, October 6, 2019 7:28 PM
Joined: 1/29/2014
Posts: 5


Thank you so much Elaine! Scarily, after reading just a little info FTD sounds a lot like what my Mom is exhibiting behavior wise right down to the hoarding. I talked with my Dad today and we are both going to to some research and get back together for a brain meld later this week.
 I am heart sick for your loss and hope you are learning how to live for you again.  Take care of yourself and God speed to regaining your own health.

Deanna


ddchristian72
Posted: Sunday, October 6, 2019 7:47 PM
Joined: 1/29/2014
Posts: 5


All who have replied, thank you so much for your words of strength. I went for a visit with Mom today and she was pleasant and happy to see me.
I took her some cooler weather clothes, and immediately i could see the glint of rage in her eyes....just like a switch "why I wont be here long enough, I'm getting OUT as soon as Dad comes home"!!! I just nodded and diverted the conversation and just like that, fortunately (for today) it was gone as quickly as it came. 

Victoria2020
Posted: Sunday, October 6, 2019 7:59 PM
Joined: 9/21/2017
Posts: 924


Glad you had a good visit. And on the deflection too- it's like Mom the Pinball game- we have to use flappers to bounce the ball the other way -watch out for the bumper! - she's stuck-- wheee made it out of there ......
abc123
Posted: Monday, October 7, 2019 6:58 PM
Joined: 6/12/2016
Posts: 525


I hope you can all move past the guilt. Please try to remember that some PWD just need too much care to be kept at home. This disease is the worst.
King Boo
Posted: Tuesday, October 8, 2019 6:59 AM
Joined: 1/9/2012
Posts: 3041


The upside - you say your Mom is pleasant to nursing home staff.  A definite plus.  Her behavior is not influencing her care.   Many have had their LO tossed out of facilities due to behavioral issues.

The hardest part of this is being a cool, clinical decision maker in the face of great emotional upset.  It's Mom.   But the next time that little question about wanting to bring her home to try again, take a look at your poor father lying in the hospital bed.    Does he really need your guilty conscience to impose that back on him, subjecting him to the 24/7 stress of her care again?   If you bring her home, you are telling your poor father he didn't try enough.  Rather an unintentionally cruel thing to do.  Your job is to support him; make him understand he didn't place her, the care needs of her disease did, and you would have 100% done the same thing.  It will help him cope and eventually visit.

Phones, computers, e mails, are often portals of distress from a former level of function that can torment our LO with dementia.  If she's calling or e mailing frequently, remove the computer and the phone.  Out of sight , sometimes out of mind.

Or at least call block her number and e mail on Dad's phones and e mail account.

The boards are full of similar tales of adjustment and heartache at placement.  It would be an amazingly good thing for your Dad if you can connect him with a support group near home that had some men in it.   

 


Syoo38
Posted: Thursday, October 10, 2019 4:02 PM
Joined: 6/22/2019
Posts: 1


Hi,

I feel like my mother in law may have the same dementia. She is turning 70 in 4 days and was diagnosed with dementia about 4 years ago. She had recently moved in with us the beginning of this year due to how fast her decline has come. My father in law’s health had deteriorated when he was caring for her all of last year. We believe she is in mid stages of 6. I had recently quit my job to care for her full time. My husband, his brother, and myself had been juggling to care for her when I was still working. The first two weeks when I had stayed home with her full time, she was resistance and combative with me. I had learn to choose my battles with her just because I didn’t want to agitate her. She mumbles the same thing over and over again and makes no sense of what she is saying. My father in law came to visit her and her personality completely turned into 180 where she was happy and laughing all the time. He stayed for a week and left. After he left, for 2.5 weeks she was still in this happy mode and we were able to get along just fine. Recently of last week, she started to become resistance and combative. Then this past Sunday was when I first hand dealt with her physical aggressive. She had pulled my hair when I tried to take her shoes off and then she almost bit me when I would help her to use the bathroom. We have her go use the restroom every two hours because she is incapable of remembering to go when she needs to (also to avoid her getting a UTI). She has become more aggressive towards just me this week. I had my brother in law pick her up and she was in awe happy to leave with him. I’ve done a lot of research of how to avoid my mother in laws triggers and learn to walk away if she is getting agitated. Now I feel like us being in the same room, she would yell at me and then laugh and then tries to throw something at me. It’s obvious that it’s a danger to my safety. I just expressed this to my husband and we are currently waiting from a call from her neurologist. I’m glad I came up on this forum to know that I’m not alone about this. I feel like I’m the trigger for her because she’s either forgetting who I am or why I’m helping her do the necessary things. I don’t take any of her aggression or actions personally because I know it’s the disease. I’m just glad I was able to read your story and didn’t feel alone about a LO dementia aggression. 


 
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