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early dementia, denial. How do I get my family to see? Help a caregiver out!
Nikki_
Posted: Wednesday, February 7, 2018 11:35 AM
Joined: 2/7/2018
Posts: 1


Hi! This is my first time using the resources on the alz site.

My grandmother is 85 years old and was recently diagnosed with Dementia in December 2017 and moved in with my boyfriend and myself at the same time.

I am her caregiver and it has definitely been a roller coaster. 

I dont know what to do. I try my best to be patient and agreeable with her but it is hard and draining.

Diagnosis is early and my grandmother seems to be in denial, which doesn't help. She tells family and friends that I treat her like a baby and that she is fine. Some days she screams when I cook for her saying she can do it on her own but she has been with me two months now and hasn't made herself anything other than a bowl of cereal or PB&J. If I don't make her a meal or put it in front of her...it's like she doesn't even know she needs to eat.

Anyone else experience this?

The one night she said she wanted to make dinner. This was around 5pm. Just to see if she could I said I'd love that. She never stepped foot in the kitchen but kept saying she would cook. Around 8pm my boyfriend started cooking and she went on a rant about how starving she was and didn't think she'd eat tonight. Other times I've made myself a lunch, when she's told me she wants to make her own or isn't hungry,  and then I hear her mumbling under her breath....well I guess I'm not eating today.     

She'll ask me to take her to the bank. Before we get up to the teller she generally forgets why we are there. Almost never remembers her act #. She's had the acct for at least 40years.

She tells me she needs SO MANY things from the grocery store, so I take her. We walk up and down every aisle and she doesn't get a single item.

Family and friends all think she's fine but they don't see her getting up at 3am putting her sneakers on like she's going somewhere.          
          Any advice on how to get family and friends to see what's going on? I' m sure it's weird for them to hear my grandmother say one thing and then me tell them something totally different.

kellly
Posted: Wednesday, February 7, 2018 11:54 AM
Joined: 6/12/2015
Posts: 1134


Her "denial" might actually be due to a common condition in dementia patients - anosognosia. It's a lack of self-awareness and it's not that she's deliberately denying that anything is wrong, it's that she's not capable of seeing it. If you try to convince her, she will likely get mad and argue with you about it. But you can possibly convince the rest of the family if they spend some unsupervised time with her. Maybe you can tell one of them that you and your boyfriend are going out of town somewhere for the weekend and you need to bring her to their house so someone can watch her. A weekend's worth of caregiving experience ought to give them a different outlook on her situation - and yours.
omnizero123
Posted: Wednesday, February 7, 2018 12:25 PM
Joined: 2/6/2018
Posts: 14


 

Nikki,

I just signed up here last night.  The stuff you described your grandmother, my mom is doing to.  She recently came to stay with me so it’s all new to me also.  She will scream bloody murder that she is hungry but all she can accomplish is cereal or a p&j.  Her go to thing is a plain loaf of bread, she can and will eat the whole thing. I utterly refuse to let her try to cook anything, as she started a fire in the place she was at before.  She would start it, forget it, and BAM whole house burnt down.  My mom makes snarky comments as well constantly “guess I’m not eating today” etc.  She constantly wants to go to the store sometimes screaming she needs stuff.  My wife son and I walk through all of Walmart for an hour to find her outside smoking with like three things. Thankfully the times she goes wandering (outside) is during the day when I’m home and I can fetch her.

 

Before my mom came to stay with me I knew something wasn’t quite right upstairs for her.  My wife was in denial and thought she was just being stupid and making bad choices.  After 3-4 weeks of staying with me, my wife is actually more understanding of just how bad off she is.

 

My thoughts are just track everything “off” perhaps keep a journal of events.  When its time to talk about it with someone you don’t have to remember it all yourself.   I started that recently (dunno if it will do anything really).

 

 


kellly
Posted: Wednesday, February 7, 2018 1:54 PM
Joined: 6/12/2015
Posts: 1134


omnizero, the list can be very helpful for a neurologist to help make a diagnosis if she hasn't been diagnosed already. That's what I had done and the neurologist was very glad to see the list of things I had observed.
Iris L.
Posted: Wednesday, February 7, 2018 2:29 PM
Joined: 12/15/2011
Posts: 15302


Welcome Nikki and Omnizero.  Everything you post about is common for PWDs (persons with dementia).  If you read about a week's worth of threads you will see the same stories over and over again.  As Kelly posted, the existence of  anosognosia causes the PWD to be less able to participate in her own care and planning.  She truly believes she is fine and becomes upset if you say otherwise.  You will have to use work-arounds to get things done, and you will learn the work-arounds from the other members.  If you read this article, you will learn more about anosognosia.

http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf 


Iris L.


Iamnumberfour
Posted: Wednesday, February 7, 2018 2:39 PM
Joined: 2/29/2016
Posts: 888


Hi Nikki. You have a lot of responsibility on your plate; taking care of someone with dementia is hard work. What you describe is typical behavior for dementia. As kelly said, your grandmother likely has anosognosia, the inability of the damaged brain to recognize that something is wrong. Think of it as having a broken reasoner. A person with a broken reasoner can't make good decisions and has trouble with complex tasks.  Initiating activities becomes difficult as well, as you observed when your grandmother said she would cook dinner.

 It is important to learn some communication strategies. I am putting a list of communication strategies at the end of this. Arguing and logic do not work. Instead agree, acknowledge your grandmother's feelings, and use a pleasant diversion. For instance, if your grandmother is acting angry and says she can cook, you might agree that she is a good cook, reminisce about something she made that you like, and bring her into the kitchen with you, and give her something to do so that she is 'helping' you...preferably something that doesn't involve a flame or a knife. Also be aware of triggers that might affect her mood. My mother is much further along the long and winding road of dementia; I am aware that if she gets hungry, she might not be able to tell me, but she does get agitated. That is a good indicator to get her meal ready, or to give her a light snack until I have the meal ready.

If you bring your grandmother to the store, you should have a list; don't rely on her to say what she needs. I can't tell you how many cans of pineapple and bottles of dishwashing liquid I found at my mother's house; she kept buying these items. The bank (and money in general) is a a tough topic; a lot of PWD get fixated on concerns about money. Do make sure that you or another reliable family member have POA and all of the legal documentation you need to manage her finances and make decisions. If you haven't already done this, contact an elder law attorney ASAP.

If your family members are there only briefly, they will not see what you do. Generally, PWD in earlier stages of dementia can hold it together pretty well for short periods. They probably believe her when she says she is cooking, shopping, and banking for herself. You can make a list of what you see happening and give them the documentation; this will also come in handy for medical and legal appointments. Or get the non-believers to spend a day with Grandma.

This is hard work, and unfortunately it gets harder. Hang in there and please come here often.

 Never ARGUE instead AGREE

Never REASON instead DIVERT

Never SHAME instead DISTRACT

Never say YOU CAN’T instead DO WHAT YOU CAN

Never COMMAND or DEMAND instead ASK or MODEL

Never CONDESCEND instead ENCOURAGE and PRAISE

Never say REMEMBER instead REMINISCE

Never say I TOLD YOU instead REPEAT

Never LECTURE instead REASSURE

Never FORCE insead REINFORCE


Eric L
Posted: Wednesday, February 7, 2018 2:51 PM
Joined: 12/5/2014
Posts: 422


Don’t hesitate to ask for a referral to a geriatric psychiatrist when you are all squared away with the neurologist and an accurate diagnosis. Compared to some of the stories I’ve read on here, my MIL has been relatively mild mannered. However, her agitation levels have increased as the disease progressed. She’s nicer to me than she is to my wife and her brother, but there were days that she would snap at me when I made her lunch (she could do it herself - if she remembered). I got snapped at one morning for putting my kids dishes in the dishwasher after breakfast because ‘I DO THAT EVERY MORNING!’ which of course was only partially true. That was the one of the few times I snapped back. I told her that she didn’t need to get angry with me because I was cleaning up after my kids. Can you imagine what is going on in their heads if they get upset with someone making them lunch or loading a dishwasher?

Things got a little worse than that. Thankfully, she was able to get into a geriatric psychiatrist and he adjusted her meds. A ‘small’ change to her anti-depressant has made a huge difference. She is far less agitated now. Of course, now that we’ve lived with it for a few years we’ve also learned how to deal with things a little better.


msh7089
Posted: Wednesday, February 7, 2018 5:49 PM
Joined: 2/7/2018
Posts: 21


Iamnumberfour wrote:

Hi Nikki. You have a lot of responsibility on your plate; taking care of someone with dementia is hard work. What you describe is typical behavior for dementia. As kelly said, your grandmother likely has anosognosia, the inability of the damaged brain to recognize that something is wrong. Think of it as having a broken reasoner. A person with a broken reasoner can't make good decisions and has trouble with complex tasks.  Initiating activities becomes difficult as well, as you observed when your grandmother said she would cook dinner.

 It is important to learn some communication strategies. I am putting a list of communication strategies at the end of this. Arguing and logic do not work. Instead agree, acknowledge your grandmother's feelings, and use a pleasant diversion. For instance, if your grandmother is acting angry and says she can cook, you might agree that she is a good cook, reminisce about something she made that you like, and bring her into the kitchen with you, and give her something to do so that she is 'helping' you...preferably something that doesn't involve a flame or a knife. Also be aware of triggers that might affect her mood. My mother is much further along the long and winding road of dementia; I am aware that if she gets hungry, she might not be able to tell me, but she does get agitated. That is a good indicator to get her meal ready, or to give her a light snack until I have the meal ready.

If you bring your grandmother to the store, you should have a list; don't rely on her to say what she needs. I can't tell you how many cans of pineapple and bottles of dishwashing liquid I found at my mother's house; she kept buying these items. The bank (and money in general) is a a tough topic; a lot of PWD get fixated on concerns about money. Do make sure that you or another reliable family member have POA and all of the legal documentation you need to manage her finances and make decisions. If you haven't already done this, contact an elder law attorney ASAP.

If your family members are there only briefly, they will not see what you do. Generally, PWD in earlier stages of dementia can hold it together pretty well for short periods. They probably believe her when she says she is cooking, shopping, and banking for herself. You can make a list of what you see happening and give them the documentation; this will also come in handy for medical and legal appointments. Or get the non-believers to spend a day with Grandma.

This is hard work, and unfortunately it gets harder. Hang in there and please come here often.

 Never ARGUE instead AGREE

Never REASON instead DIVERT

Never SHAME instead DISTRACT

Never say YOU CAN’T instead DO WHAT YOU CAN

Never COMMAND or DEMAND instead ASK or MODEL

Never CONDESCEND instead ENCOURAGE and PRAISE

Never say REMEMBER instead REMINISCE

Never say I TOLD YOU instead REPEAT

Never LECTURE instead REASSURE

Never FORCE insead REINFORCE


 So much great advice on this thread. I really like these words and suggestions. 

I am in the same boat, and it is hard, getting harder as time goes by. Definitely find a way for respite. That is where I am right now. Looking into daycare, just hoping my 87 y/o father will eventually agree to go. Senior centers can be helpful, as well, to give you some respite. Possibly even some churches might have something. Dinners, lunches, senior activities, that sort of thing. We have an elderly neighbor who goes to a church hall 3x a week to exercise with fellow elderly folks, and he's not even a member of the church. There are some programs. Do you have an area on aging to offer suggestions for options in your area? 


longestgoodbye
Posted: Wednesday, February 7, 2018 5:58 PM
Joined: 2/6/2018
Posts: 4


This disease is a horrible roller coaster ride.  In addition to the comments below I would highly suggest that you get used to telling white lies to your grandmother.  Just go along with her stories and try to divert to something else if she is getting hostile.  My mom will say things that make no sense or that never happened and I just go along with them and have a full conversation about something that isn't even real.  It doesn't matter because it makes her happy and keeps her calm. 

 You're grandmother is almost like having a child.  You are going to be her memory for her.  It's a lot of work.  If she says she needs stuff at the store maybe make a list with her before you go and help her get the things on the list.  You will get used to the things she likes and will notice when she needs things so that when you go to the store you can help her.  Don't even bother to tell your grandmother she has dementia.  It will just upset her.  Include her in the cooking - maybe say "grandma will you help me cook dinner tonight" or "grandma can I help you cook dinner"... you will end up doing most of it but give her tasks so she is included.  You will learn what keeps her calm.  Just keep her calm.  The lines at the end of "Iamnumberfour's" post are perfect.  

When my mom was first showing symptoms nobody in my family agreed with me.  For two years!!  Even the dr.'s told me it was normal aging.  It took me 2 years to find a dr that agreed with me.  It was very frustrating. I knew my mom had a problem and I was on my own with it.  Fast forward and now everyone agrees but the first two years were tough.  I think your grandmother is further along than my mother was when I noticed changes so if your family spends time with her they should catch on real quick.

Good luck.  Hang in there. 


STRINGERBELLSMOM
Posted: Wednesday, February 7, 2018 9:31 PM
Joined: 2/7/2018
Posts: 4


The best thing I did was take my mom for an evaluation with a neuro-psychologist. She failed spectacularly and that put the issue to rest. Next I had her spit into vial and sent to 23 and me and she tested positive for late onset Alzheimer’s. No more arguments with family over her issues. But she herself had no clue.
Iris L.
Posted: Wednesday, February 7, 2018 11:42 PM
Joined: 12/15/2011
Posts: 15302


STRINGERBELLSMOM wrote:
But she herself had no clue.
 
 
 
 Welcome, stringerbellsmom.  This is anosognosia--cluelessness.  This article will explain more.

http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf 

Iris L.

elruth
Posted: Thursday, February 8, 2018 1:28 AM
Joined: 12/17/2016
Posts: 50


What is 23 and me? I never heard of spit being used to diagnose Alzheimer's. Please explain.
cmf13
Posted: Thursday, February 8, 2018 6:09 AM
Joined: 7/10/2017
Posts: 30


Hi Nikki,

First, I want you to know that you are not alone.  Lots of us have been where you are, or are still there, but with a bit of experience under our belts.  It's not easy, but you've been given some great advice already.  What I've found is that there is usually a lot of trial and error that goes into creating a peaceful life (or as peaceful as it can be.)  So keep trying, and you'll find what works best for you and your grandma.

My mom came to stay with us just over a year ago now.  What a year its been.  There have been times that I've wanted to run away because things seemed so bad and I couldn't figure out what to do to make it better. But I've taken others advice and kept at it till what ever the issue was worked itself out.  I cant change my moms behavior or beliefs, I can only change how I approach the situation.  I've learned alot in the last year.  You will too.

We had/have food/meal issues too  A few things that have worked for us include:

We always sit down for a family evening meal together.  I cook.  Mom wipes down the table and brings the dishes over to the sink.  She feels like she is contributing and not being taken care of like a baby.  She cant tell you what she just ate, but she never forgets to wipe down the table.  Its very important to her to feel useful.  (How would you feel if most of your independence was taken away?)  This also helps ensure that at least mom is getting one really good, nutritious meal a day.  Mom does make herself a cup of tea and a bowl of cereal every morning.  If she didn't I would probably leave muffin/fruit in a bowl near where she likes to sit.  I've found that if I leave a bowl of grapes, cut up fruit, popcorn, etc. in convenient locations, she will eat it.  I don't say anything, I just make sure the food is where she can see it.

Lunch is trickier.  We did battle for months.  Me asking her what she wanted to eat, her telling me she already ate (no she didn't), she can cook for herself, etc..  Finally I decided that she was eating something for breakfast, I was leaving lots of snacks around that she was eating, and she was eating a really good evening meal.  (her weight was down to 75 lbs when she moved in, and at that time she had put back about 10 lbs-she is now 93 lbs) so, I should just stop doing battle and give us both some peace.  Some days I let her fend for herself, while always making sure "snacks" are in her line of site.  Some days I bring her a plate of food and just set it down in front of her (say- thought you might like some leftovers from last night, and then I walk away.  No time for an arguement.) Sometimes I'll suggest we go out, or just eat outside, anything different. Usually I give her an assignment like setting the table, or carrying out a bottle of ketchup- again, make her feel useful.  At some point we might settle into a peaceful lunch routine, but for now this works. 

Mom always needs something at the grocery store, NOW.  I do my best to accommodate, but I've learned to say "ok, why don't you make a list of all the things you need and then we will go.  After you have your list come get me.  "  It can take her hours to make a list.  If she remembers to come get me, I will then say, lets check and see if there's anything else we need.  I then go through her list while checking to see if she already has the items.  If she does, I'll say "oops, you must have missed the lemon juice, see it's right here"  then I remove the item.  If there are still items on the list and its convenient, I'll take her to the store.  If not, I'll suggest that we go tomorrow/later so that I can make a list of things I need.  Then suggest that she do a puzzle/watch tv, etc.  The immediate need is usually over, and the distraction works.

Hang in there.  You do get better at dealing with things.  Remember, you are not alone.  Post as often as you need, even if it is just to vent.  We all need to do that at times.  Good Luck.

Cyndi


Sather56
Posted: Thursday, February 8, 2018 1:01 PM
Joined: 5/30/2016
Posts: 477


Welcome!!. First of all, I strongly recommend reading "Understanding the Dementia Experience." It goes through the behaviors and ways to be able to communicate with your PWD. You never ask if they are hungry; they cannot tell you most of the time. Your grandmother has brain failure. She cannot respond to you the way you are used to. You cannot reason, argue or challenge a PWD.  She is unable to manage her life. You must be her advocate. By doing so, you will do everything to keep her safe. You have to get her tested. The sooner, the diagnosis, the sooner she can gets on medication. It will not cure it, but will slow the progression.
ruthmendez
Posted: Thursday, February 8, 2018 2:54 PM
Joined: 9/8/2017
Posts: 749


answer about 23 and me.
 https://www.23andme.com/

IndCareSon
Posted: Thursday, February 8, 2018 3:43 PM
Joined: 1/22/2018
Posts: 11


I thought alz could only be diagnosed definitively through a brain autopsy, or has that changed?
ruthmendez
Posted: Thursday, February 8, 2018 3:58 PM
Joined: 9/8/2017
Posts: 749


my guess they're getting much info. About you and past family health issues, and gather similar genes and say you are likely to have, but not necessarily have. Not sure. But so far an autopsy is definite
Unforgiven
Posted: Thursday, February 8, 2018 11:24 PM
Joined: 1/28/2013
Posts: 2497


23andMe is a genetic testing site that will tell you your ethnic ancestry based on the genetic material in saliva.  But for some extra money to buy the health option, they will also tell you what illnesses you might be genetically predisposed to.  This was wonderful for me, as 23andMe recently told me I did not have the marker for later in life Alzheimers, good news for me, as I have bedn caring for a mother with mixed dementia.  The bad news is that I havd inhdrited her gene for macular degeneration.  Knowlege is never a bad thing.
 
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