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Losing Grip with Reality
swimchick0425
Posted: Monday, August 26, 2019 7:29 AM
Joined: 8/16/2019
Posts: 11


My LO (my mother) was diagnosed with ALZ at 54, she lives with me and my husband. She is on medication and right now mostly for mood, voices, and sleeping. Although lately she has taken a turn, to where she cannot tell the difference between a dream and reality. It becomes frustrating for me and my husband because she constantly wants to go home or with her parents (they live in AZ, I live in NJ), we have had numerous discussion that this is her home now and her doctors are here, and sometimes works and sometimes it doesn't.

How can we help her with this loss of reality? Is there anything we can do? Another thing, if her parents do come and visit, will she be okay if they leave? I am worried that she will have a break down or think they are abandoning her.

Also lately she has voices that tell her where her missing jewelry is, or that belittle her, and it is so hard to watch her and help her work through this.

My mother is very young and I think she is at middle stage right now, I am calling to find her a new neurologist to get a timeline (if that's possible?).

 

Thank you so much for all the help. I recently found this support group and it has been great to express these things.


romiha
Posted: Monday, August 26, 2019 8:23 AM
Joined: 12/21/2014
Posts: 565


I'm sorry you are going through this!  Your mom is younger than me!  I'm glad you found this community though.

Here's a 3-minute YouTube video to watch that explains rather simply what happens to the brain of one afflicted by Alzheimer's disease.   Remember that the earliest/first memories formed are the last memories to be destroyed.  So, your mom might be remembering a "home" from earlier in her life - she simply cannot grasp the fact that she is "home" right now.  

 https://youtu.be/Eq_Er-tqPsA 


BarbaraG
Posted: Monday, August 26, 2019 8:24 AM
Joined: 3/24/2019
Posts: 9


Hi swimchick0425

 It's Monday morning, let the fun begin.  The caregiver just called and said my MIL is really out of it today and doesn't even remember that her weekend caregiver was there Saturday and Sunday.  She told today's caregiver that no one visited over the weekend. She's been wearing her underwear and a light jacket around the house the last couple of days (we can see on the nanny cams). It is so sad to see our LO losing grip with reality.

Kudos to you and your husband for taking care of your mother.  It takes a special person to be able to do that.

The people in this group seem to have a lot of knowledge and experience.  I hope someone can give you some good advice.

It's good to know we are not alone in dealing with the nightmare disease.

Barbara



SunnyBeBe
Posted: Monday, August 26, 2019 10:51 AM
Joined: 10/9/2014
Posts: 701


It sounds like you really are listening to your mother's concerns and trying to help her and that's so good. I might also consult with a psychiatrist who focuses on patients who have AD.

 I know it's tough to know what the best route is. When my LO was first diagnosed, (she was 62 years old, and was diagnosed with VD. It was substantial, but, a few years later, her psychiatrist thought that she had mixed with AD. I am not sure.) she had confusion with reality.  She would sometimes tell me that it was like she was in a dream.  She would ask me what was real and not real.  It didn't seem to scare her if I was nearby or she could talk to me.  I would tell her that things were real and that all was okay. Later, as she got things mixed up, I would just agree with her.  If she thought she was working at the MC in the office, I said that was okay, as long as she wanted to work there, but, if she wanted to take a leave of absence, it was okay too.  When she thought her doctor slept on the couch of her MC, I said that he worked late, but, would get more rest later that day when he got home.

I suppose there's no way to know if she would get upset if her parents visit and then leave. You might have an explanation in place that they have to run an errand and will return later and not make a big deal of their departure. 

Sometimes, you just try to say things that are supportive, understanding and kind and see what works.  Even if they don't really make sense, if they help her process things and stay content, it helps her feel better. That was important for me with LO.  Just trying to keep her content and not stressed out. I often complemented her because she was somewhat aware in the beginning that things weren't right. I reminded her of how much people loved her and admired her.  As she progressed, the conversations were not really about reality, but, what she was thinking, so, I just would encourage her with comments like, "How about that. My goodness.  That's amazing. You have certainly been busy. Tell me more."  etc.  With her, this period eventually ended and she stopped saying much at all.  

 


Dot9000
Posted: Wednesday, August 28, 2019 7:51 AM
Joined: 6/12/2019
Posts: 44


swimchick0425 wrote:

How can we help her with this loss of reality? Is there anything we can do?
 ~~~~~~~~~~~~~~~~~~

My heart breaks for you, she is so young.

Unfortunately, her reality is it. There is no other. There may be good days where she seems okay, but then not so good days where robbers are coming in to steal the Tupperware (been there, done that). It's best to keep her calm. If she says, "The dog ate my sandwich" and you don't have a dog, just say, "Oh, I'd better feed him. He's hungry" or something like that. In her reality, there really truly is a dog. You learn to deflect, distract or just go with it. 

As the disease progresses, more recent memories are lost. They go back in time. Wanderers try to find their childhood home, because that is their reality. That is where they live now and they want to go home. They don't remember grandkids or even their own children (because they don't exist in the past). If they see their parents, they may not recognize them now because in their minds, the parents are still young. Explaining does no good and often causes agitation. If they don't recognize a family member, caregivers just tell the LO the person's name and say they are a friend who has come to visit. It keeps the LO calm and they don't feel bad for not remembering.

I'm really sorry you have to go through this horrible sh*t. Know you are not alone.Read up on the disease, watch YouTube videos, call your local Alzheimer's hotline and come on here often. The people here are so helpful! IMPORTANT: take care of yourself so you don't burn out. Here are some things that may help you:
 
 • Understanding the Dementia Experience by Jennifer Ghent-Fuller (Google search and download free pdf)

 • The 36 Hour Day by Nancy L. Mace (Amazon)

 • 24/7 Helpline: 1.800.272.3900. Alzheimer's Association (USA)

 • Teepa Snow (YouTube videos)
 

 Hang in there. You are a hero. ♥♥♥
 
 Dot

 


harshedbuzz
Posted: Wednesday, August 28, 2019 8:43 AM
Joined: 3/6/2017
Posts: 1699


swimchick0425 wrote:

My LO (my mother) was diagnosed with ALZ at 54, she lives with me and my husband. She is on medication and right now mostly for mood, voices, and sleeping. Although lately she has taken a turn, to where she cannot tell the difference between a dream and reality. 

Gosh, you people are all so young to have all of this on your plate. There is a Yong Onset Board you might want to visit as well if you haven't already. 

My dad got confused around dreams and reality as he moved into the later stages of the disease (stage 6-ish). He also confused what he saw on TV as being part of his personal experience. This wasn't a huge deal when he was at Sunday dinner with the folks on "Bluebloods" but it was a problem when he took on the plot from mom's beloved CSI and even those dire warnings on TWC. You might want to keep an eye on TV viewing at this stage. 


It becomes frustrating for me and my husband because she constantly wants to go home or with her parents (they live in AZ, I live in NJ), we have had numerous discussion that this is her home now and her doctors are here, and sometimes works and sometimes it doesn't. 

As the disease progresses, "home" isn't so much a physical place as an feeling of security. It's very common for PWD to want to return to their parents; it's unusual for those to still be alive. I'm not sure if it would work for you, but many promise to take their LO home at some later date. Perhaps tell her you'll do when you get some vacation time or that Dr. So-and-So wants her here for a while so he can make sure she's getting all the help she needs. Some people redirect to another topic or the offer of a treat to distract. What worked for me was using "home" as a segue to connect with dad about something he seemed to sense he was losing memories of- so I told a story about it which seemed to help. 

How can we help her with this loss of reality? Is there anything we can do? 

If she's already on an appropriate medication cocktail, reassurance and validation of her feelings is all you can do really. It's best, as much as you can, to join her in her new reality. 

Another thing, if her parents do come and visit, will she be okay if they leave? I am worried that she will have a break down or think they are abandoning her. 

This is a tough call. Depending on how the disease is impacting her brain, this could be a non-event. There's a possibility she has time-traveled to a different era in her life and might not recognize these old people as her parents in the era where her reality is now. My dad sort of slipped in and out of recognizing people he didn't see often. He always recognized my mom, his brother and me- but he was sometimes confused by his adult grandchildren (39, 36 and 25) who he believed were preschool aged. And even though he recognized my 60 year old self, he forgot that I was married (30+ years) and would ask who the guy I was shacking up with was. 

Also lately she has voices that tell her where her missing jewelry is, or that belittle her, and it is so hard to watch her and help her work through this. 

That sounds so hard. Medication and validation should help. Dad constantly thought my mother was leaving him or cheating. He would visibly brighten up when I assured him how much she loved him. 

My mother is very young and I think she is at middle stage right now, I am calling to find her a new neurologist to get a timeline (if that's possible?).

I don't know that any neurologist can offer you a timeline. I have heard all manner of thoughts about life expectancy and EO- from those who say the disease progresses more quickly on average to those who say younger people are more likely to live through all the stages because they have fewer co-occurring illnesses which could shorten their lives. In terms of staging, you probably have a better sense of where she is based on behavior as you live with her. This would be especially true if she's one of those individuals who can seem more with it for short periods of time with the doctor. 

My only advice would be to seek a geriatric psychiatrist to manage her medications. We found dad's to be the most useful member of his medical team after getting a complete diagnostic workup. 

 

Thank you so much for all the help. I recently found this support group and it has been great to express these things.