Caregiving resources for every stage of the disease.
RSS Feed Print
Do we use the "A" word?
Gretchen57
Posted: Wednesday, January 23, 2013 4:45 PM
Joined: 1/23/2013
Posts: 6


 I'm brand new here and don't know quite how to get started so I'll just jump in. I'm caregiver to my Mom and Dad.  Dad has level 3-5 Alzheimer's (based on a quick review of the info here), depending on the day. He's on Aricept and Namenda for 2 years or so, which I think have helped slow things tremendously. 

 

We still talk about his "memory" and we haven't come out and put the A word on it in his presence. His Mom died of Alzheimer's after years in a nursing home, and this is his worst fear coming true. He's compliant with his medicine and knows his head isn't what it used to be, but he often says, "I don't think I forget as much as everyone thinks I do."

 

We're fast approaching the tricky part, where we take away his keys (he drives very rarely but still drives) and start to manage him more and more. Mom is 83 and in less than great health with mild dementia of her own. (They live together, alone). 

 

Bottom line question (one of them anyway) - do we have a sit-down and say, "you have Alzheimer's", or do we go along the way we are? (My family hasn't been the up front sort by nature.)

 

The DOCTORS haven't even used the A word - until I asked them directly. 

 

Thanks for any thoughts. 

 

 


DZ
Posted: Wednesday, January 23, 2013 5:04 PM
Joined: 12/7/2011
Posts: 1736


Gretchen57 wrote:

 I'm brand new here and don't know quite how to get started so I'll just jump in. I'm caregiver to my Mom and Dad.  Dad has level 3-5 Alzheimer's (based on a quick review of the info here), depending on the day. He's on Aricept and Namenda for 2 years or so, which I think have helped slow things tremendously.  

  

We still talk about his "memory" and we haven't come out and put the A word on it in his presence. His Mom died of Alzheimer's after years in a nursing home, and this is his worst fear coming true. He's compliant with his medicine and knows his head isn't what it used to be, but he often says, "I don't think I forget as much as everyone thinks I do." 

  

We're fast approaching the tricky part, where we take away his keys (he drives very rarely but still drives) and start to manage him more and more. Mom is 83 and in less than great health with mild dementia of her own. (They live together, alone).  

  

Bottom line question (one of them anyway) - do we have a sit-down and say, "you have Alzheimer's", or do we go along the way we are? (My family hasn't been the up front sort by nature.) 

  

The DOCTORS haven't even used the A word - until I asked them directly.  

  

Thanks for any thoughts.  

  

  

Take away the keys NOW

It is difficult for us carers to accept LO's mind is damaqed by Alzheimer's Disease. develop boundless patience.

Forget about rational speak. Not only is memory damaged their ability  to process thoughts and conversations is impared.

      


 


Mom's Baby
Posted: Wednesday, January 23, 2013 5:25 PM
Joined: 12/19/2011
Posts: 940


Hi Gretchen--


I think it just kind of depends. I personally would never use the "A-word" around my mom. But her Alzheimer's has manifested itself by making her a million times more emotional than she ever was before developing this disease. She would cry and quite literally freak out if I told her she had Alzheimer's. 

Some other Alzheimer's patients are not as affected by the truth. But, as DZ posted earlier, I guess you really have to look at it from these angles:

1) What do I hope to achieve by telling my loved one he or she has Alzheimer's?

2) How will he/she most likely react? 

3) Is he or she far enough along in the illness that he/she won't remember the diagnosis anyway? 

If you're hoping to get your dad to be more compliant with meds, caregivers, taking away the car keys, etc. by telling him he has Alzheimer's....that usually doesn't work. Most people with the illness have anosognosia--a fancy medical term that means they do not believe there's anything wrong with them and they never will. I would personally play it safe and just go along with your dad. He says he has memory issues, and that's more than most people will admit to. 

The best way to work with someone with dementia is to agree with them, not upset them and figure out ways to do what needs to be done without them knowing about it. That may sound disrespectful, but they are usually past the point of being able to be rational or logical. If you try to get them to "buy in" to things, you're typically going to be disappointed. Just my two cents!


Tomc5592
Posted: Wednesday, January 23, 2013 5:52 PM
Joined: 11/17/2012
Posts: 1203


Mom's Baby wrote:

Hi Gretchen--


I think it just kind of depends. I personally would never use the "A-word" around my mom. But her Alzheimer's has manifested itself by making her a million times more emotional than she ever was before developing this disease. She would cry and quite literally freak out if I told her she had Alzheimer's. 

Some other Alzheimer's patients are not as affected by the truth. But, as DZ posted earlier, I guess you really have to look at it from these angles:

1) What do I hope to achieve by telling my loved one he or she has Alzheimer's?

2) How will he/she most likely react? 

3) Is he or she far enough along in the illness that he/she won't remember the diagnosis anyway? 

If you're hoping to get your dad to be more compliant with meds, caregivers, taking away the car keys, etc. by telling him he has Alzheimer's....that usually doesn't work. Most people with the illness have anosognosia--a fancy medical term that means they do not believe there's anything wrong with them and they never will. I would personally play it safe and just go along with your dad. He says he has memory issues, and that's more than most people will admit to. 

The best way to work with someone with dementia is to agree with them, not upset them and figure out ways to do what needs to be done without them knowing about it. That may sound disrespectful, but they are usually past the point of being able to be rational or logical. If you try to get them to "buy in" to things, you're typically going to be disappointed. Just my two cents!

Very well said!

CarolPA
Posted: Wednesday, January 23, 2013 6:21 PM
Joined: 3/7/2012
Posts: 218


I decided back in 2007 (Mom passed away Dec 2012) -- to specifically tell Mom she had Alzheimers.    I thought the conversation went very well.    Then we had the same conversation again - and I wrote the word Alzheimer on a yellow sticky note for her because she said it would help her remember. 

   

 

Long story short... a couple of weeks later I collected all the various yellow stickies and put one on each finger and waved them and said "Yes, we talked about this, you have Alzheimers". 

 

My point is that it really didn't matter if I used the word Alzheimer.   What mattered was the plans I started to put in place to care for her during the long, long journey of care. 

 

 

 


Iris L.
Posted: Wednesday, January 23, 2013 6:32 PM
Joined: 12/15/2011
Posts: 13094


Gretchen57 wrote:

 . He's compliant with his medicine and knows his head isn't what it used to be, but he often says, "I don't think I forget as much as everyone thinks I do." 

  

  

  


Gretchen, here is a link to an article which explains anosognosia.  It's not denial, it's actually a feature of dementia and a few other brain diseases.
 

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

Iris L.
 


dj okay
Posted: Wednesday, January 23, 2013 7:29 PM
Joined: 11/29/2011
Posts: 1837


Welcome, Gretchen!

 

I'm so glad you have reached out to this wonderful community of folks!  You will find a lot of information and support here in the form of experience...from people that understand what you're going through and have been there, or will be someday.

 

My mother's sister had Alzheimer's and my mother was terrified of the word.  I personally NEVER used the word around her.  I rarely used the word dementia, but I would if I absolutely needed to.  I didn't need to very often.  During the phase when Mom was about like your dad is now, she was pretty aware that there was something wrong with her brain.  For some reason, every dementia patient doesn't get anosognosia.  Later in her journey, she didn't really think anything was wrong with her on most days.  I consider myself very fortunate that she was never adamantly convinced nothing was wrong with her.

 

One thing I did learn was that logic and reason no longer worked.  That was one of the first things that my mother lost, the ability to look at a situation and come to a sound conclusion, even with much explaining and reasoning. 

 

Mom's Baby is right, most of us just have to learn to figure out another way to make the things happen that need to happen in order to keep our loved ones safe and as content as possible.  Keeping them content is hard, but every effort you spend on that goal is well worth it in terms of caregiving difficulty.

 

Do come back often.  Someone is always around to help.


Missoula1967
Posted: Wednesday, January 23, 2013 7:59 PM
Joined: 1/21/2013
Posts: 4


Hello, I am also brand new and this is my first post. My sister was diagnosed while she was able to process the meaning of the disease. We later said she had some "memory issues" and that seemed to be acceptable. At this point it is pretty evident that she has no short term memory, and there is no need to discuss it. She does not realize that she doesn't remember anything. 

Getting her to stop driving was difficult but it was past time for her to stop. We realized that she (we) were putting the public at risk.  I encourage you to work on taking the keys away or getting rid of the car any way you can. Good luck, it is not easy but if you can still appeal to his sense of safety or if he is still able to reason, then maybe you can make progress by continuing the discussion. 


amandams
Posted: Wednesday, January 23, 2013 8:07 PM
Joined: 12/20/2011
Posts: 60


I didn't use it with mom because I knew it terrified her.  she was happier saying she had short term memory issues.

 

the only people who wanted to put a label on it were her friends,  but it wasn't their business.   i think they just wanted to gossip aboout her.

 

in my opinion, only the caregivers ( me, dad, my husband and my daughter) needed to know it was Alzheimers.  mom couldnt change it or remember it.  We needed to know what we were up against.

 


bela
Posted: Wednesday, January 23, 2013 11:16 PM
Joined: 12/15/2011
Posts: 3457


with the C word there are often treatment options to irradicate the disease, i.e surgery, radiation, chemo and many people have survived cancer with these treatments.  this is not the case with A so what is the point of naming it to the people that have it...

do you really want to scare your dad to death (his worse nightmare)....I don't understand what the objective to doing so would be....maybe family members can discuss the disease/word but the people that have the disease need not know...


Missoula1967
Posted: Thursday, January 24, 2013 7:19 AM
Joined: 1/21/2013
Posts: 4


I should mention that the family does not use the "A" word anywhere except at the doctors. My sister was the one who first used the phrase "memory issues" and it seemed appropriate and acceptable. When she last asked about driving or getting a new car, I was able to suggest that with her memory issues, it might not be a good idea.   

(Please forgive my choppy posts from my mobile phone)


Homer_E_S
Posted: Thursday, January 24, 2013 10:25 AM
Joined: 2/9/2012
Posts: 390


The Credo for Doctors is, First do no harm.

So the answer to your question is he harmed by identifying his changes as Alzheimer's. 

Does it change how you treat him?

Does it change how others will treat him?

For a person who has seen Alzheimer's in his family it may add stress and fear

in his mind, that could in turn make caring for him harder.

His sliding into depression would also make care taking harder.

.

My wife was completely closed to any talk of Alz. I respected that.

I also realized, that by the it was clear she had Alz, she had already lost some of the ability reason out all this meant for her life. We weren't close to the start of this, it had happened years before.

.

I will say, through this whole thing, I have wished we could sit and honest conversations about now and the future. 

But she was just unable to talk about so I wasn't going to force that on her.

It did leave me making decisions alone, but you will being doing that anyway sooner or later.


Gretchen57
Posted: Thursday, January 24, 2013 10:48 AM
Joined: 1/23/2013
Posts: 6


That is hugely helpful. I want to be as respectful as I can of his intelligence (which is still there, sometimes) but you're right, there isn't anything to be gained by it, other than adding distress and stigma.

 

Mom (with mild(er) dementia of her own), of course, is a complicating factor.  It's hilarious (?) to watch them argue over who forgot what.  When DAD is the one who remembered correctly, he's like a kid who just won first prize.

 

And of course, when I'm the one who doesn't remember, well... I think I need to start on Aricept NOW.  We joke (?) that it's "catching."

 

Thanks so much for the insight.  It also will help me explain to my siblings that this is the best course of action - or at least a perfectly acceptable option.

 

 


KML
Posted: Thursday, January 24, 2013 10:51 AM
Joined: 11/30/2011
Posts: 1989


When we took my dad to the neurologist to figure out what was going on, the doctor did not use the word Alzheimer's in front of my father.  She spoke with my sibling and I separately, I asked her what was happening and she said most likely Alzheimer's.  I asked her if she should tell my dad, she said it was completely appropriate to tell him he's having difficulties with his memory.

 

When we got home from the doctor visit, my dad started to cry and said it's sad.  He called my uncle and told him he had Alzheimer's.  No one ever mentioned that word to him, he just knew.

 

We never mentioned the word even after that to him, because we knew it would upset him.  He would always say he thought he was doing pretty good for his age and he would say everyone forgets things and he was right on both counts.  He progressed and as he did, we told him he's older and he's having difficulty with his memory and this happens to many of us, me included, that made him feel a bit better I think.  Each step when it was clear he couldn't do something any longer, driving, walking alone outside, using the microwave, living alone, we always stressed that getting older is tough sometimes and we have to try something different.  I would always tell him we all need help sometime in our life and I told him I would, too, that there was some things I just couldn't do anymore like I used to.  I never wanted him to feel less of a person or that he was failing by something he caused.   I think it helps to try and do the things for them that they used to enjoy for as long as you can and they can, do your best to preserve their dignity as long as you can, always tell them you love them, always praise their victories and abilities.   Try and always consider their feelings, they will continue to feel, they may not always understand, but they will feel and sense.

 

Looking back at my dad now, he was a very independent and proud man, sometimes he kicked up and got upset about what he was losing, but overall, I'm very proud of him, he tried to do his best and get along.  I don't think I would be as gracious as my father was. 

 

It's a difficult journey for all involved with twists and turns and it won't be perfect, it will be raw and emotional at times, it will be sweet, it will be terrifying at times, it will be frustrating, it will be satisfying, it will be humbling, it will be happy and as my dad said, it will be sad.

 

I remember one time, I was leaving my dad's house and when I got to the car I couldn't find my glasses, my dad asked he what's wrong, told him I can't find my glasses, "where did you put them"?  I don't know, I don't remember, I looked upstairs, downstairs, all over.  Well they were slid into my sweater near my neck.  I looked at them, I looked at my dad and he said, "welcome to the club."  We got a good laugh at that one. 


Gretchen57
Posted: Thursday, January 24, 2013 11:10 AM
Joined: 1/23/2013
Posts: 6


Homer_E, you bring up a good point, and something I didn't even realize I long for - I wish I could talk to him about how he would like me to handle things, how we should DO this. (If he tells me, then I know I'm doing the right thing, right?) Or some such backwards psychology on my part.

 

I also know he's frustrated and scared with how his brain is acting ("Do I have it? Or don't I?")  - which is heartbreaking -  and in some ways I will be grateful for him to get to the point where he doesn't know the difference, for his sake.  (That must sound horrible and naive)

 

I hate this disease.

 


Karenz
Posted: Thursday, January 24, 2013 12:34 PM
Joined: 2/9/2012
Posts: 376


One of my SIL told my MIL she had Alz and my MIL went ballistic (since she lives with me I had to get her calmed down).  She also became upset when she read on her medic alert bracelet the diagnosis "dementia".  I just told her "that's what the Dr said" and changed the subject.  Whenever she says she doesn't remember something, i just say "that's ok, i'll remember for you."  Since she has anosognosia, there's no point in arguing with her to trying to convince her that anything is wrong.
J's daughter
Posted: Thursday, January 24, 2013 7:33 PM
Joined: 9/20/2012
Posts: 450


Mom knows she has "Memory Loss".  Yup.  Memory Loss.

uuummmmm....not really.  It's Alz.  And for some stupid reason early on, I thought it would be a good idea to tell her.  Really!!!!!  What was I thinking.  Poor Mom fell apart.  I certainly wasn't helping her any and I felt horrible. 

We stick with Memory Loss.  She can handle that and it makes absolutely no difference in how we deal with Mom with what "label" we use.

Family and others know that Mom has Alz.  and there are times I need to tell strangers if Mom is having one of those days and she is just not making any sense.   But so far, we are keeping an even keel.

Every person is different.  Every situation is different.  You will know what to do and how to proceed.  But the advice of the others above is solid.  Think about what your goal is, what the needs are and how to meet your Dad's needs first. 

 

My Mom is happy and safe.  That is my goal at this point.  Goal met so far!


worthington
Posted: Thursday, January 24, 2013 8:52 PM
Joined: 1/7/2013
Posts: 71


This sight has been so very to me helpful to me. But I think I am learning that I'm doing a lot of things wrong. From day one I told mom that she was diagnosed with Alzheimer's. She seemed to handle it pretty well, she knew she was being tested for her memory and I told her its ok. Maybe I was wrong I don't know she is still aware that she has Alzheimer's because she will bring it up from time to time. Some days she tells me she doesn't think she has it anymore. From looking at the 7 stages she has a lot of stage 6. I would never want to hurt her.
J's daughter
Posted: Friday, January 25, 2013 5:40 AM
Joined: 9/20/2012
Posts: 450


Dear Worthington,  One of the specific aspects of this disease is that every family and every LO is unique with their own needs and challenges.  If your Mom is ok with the word "alzheimers" what harm is being done?  She may find (at some level) solace knowing that  the changes in her abilities has a cause.  And possibly the word alzheimers is an abstract word that she has applied a different meaning that really has nothing to do with the actual disease.

Because my situation with my Mom works one way does not mean that is the way for you.  My Mom had provided years of pastoral care in nursing homes through our church.  Alzheimers is a disease and a word that she knows very well.  And she is just cognitive enough to know what it means.

My best advice is to love with patience and kindness and keep fighting the good fight.  In whatever way and down whatever path that means for you all.

hugs

karen

 


Gretchen57
Posted: Friday, January 25, 2013 7:38 AM
Joined: 1/23/2013
Posts: 6


Worthington, I would want to know, if it were me. Clinical details give me comfort, as I think they do a lot of people. But I'm grateful to know that not using the A word is okay, too. 

I think it's wonderful you were able to talk on those terms with your Mom. 

 


CME
Posted: Friday, January 25, 2013 8:26 AM
Joined: 1/6/2013
Posts: 52


With my mom, there are times when she knows she has dementia and at other times, she tells me "You know, I think there must be something wrong with my brain.  I can't seem to remember anything."  She is usually crying when she tells me that and it is at those times when I tell her "It's because you have dementia, Mom.  "  Then she thinks she must have been a 'wicked" person for this to happen to her.  I try to reassure her that dementia happens as part of the natural aging process to all of us as we age....to different degrees in each person, and at different ages.  She is 87 and was diagnosed ( with dementia) about 8 years ago. I have never used the Alzheimer's word with her even when she asks if she has Alz.  I'm not really fibbing to her as she has not been diagnosed with Alz, only dementia.  (From reading the 7 Stages of Alz,I feel she is probably stage 5-6.  Thankfully, she has not started to wander yet, but I know it may come at any time.  Sometimes she walks around the house looking all around and asks if she lives here.  We live in a split level home and she has her own private quarters on the ground floor (minus a kitchen).  We eat all our meals together.  Keeping her happy is almost impossible.  She just sits most of the time.  She reads alot, but doesn't remember what she read so re reads over and over until she gets frustrated and then just sits.  She listens to tapes and follows along but then can't figure out how to change the tape.  As soon as I hear it is time to turn it over or change it I go to help so she doesn't get frustrated. By the time we get the tpe going again, she doesn't know where she was to follow along.  I guess the time is coming when I should start to read TO her.  I encourage her to play her piano but she says she can't play any more. I have purchased a "Learn to play Piano" book and am going to try to interest her by having her helpme learn. Yesterday she watched Animal Planet on tv all day while putting together a puzzle.  There are times when I know she is struggling to figure out who I am.  So sad, but we are bumping along as well as we can.  

This forum has been great.  I haven't been here too long, but I have learned so much and am grateful to read the posts of others.  Helps to know what may be coming my way.


CME
Posted: Friday, January 25, 2013 8:30 AM
Joined: 1/6/2013
Posts: 52


With my mom, there are times when she knows she has dementia and at other times, she tells me "You know, I think there must be something wrong with my brain.  I can't seem to remember anything."  She is usually crying when she tells me that and it is at those times when I tell her "It's because you have dementia, Mom.  "  Then she thinks she must have been a 'wicked" person for this to happen to her.  I try to reassure her that dementia happens as part of the natural aging process to all of us as we age....to different degrees in each person, and at different ages.  She is 87 and was diagnosed ( with dementia) about 8 years ago. I have never used the Alzheimer's word with her even when she asks if she has Alz.  I'm not really fibbing to her as she has not been diagnosed with Alz, only dementia.  (From reading the 7 Stages of Alz,I feel she is probably stage 5-6.  Thankfully, she has not started to wander yet, but I know it may come at any time.  Sometimes she walks around the house looking all around and asks if she lives here.  We live in a split level home and she has her own private quarters on the ground floor (minus a kitchen).  We eat all our meals together.  Keeping her happy is almost impossible.  She just sits most of the time.  She reads alot, but doesn't remember what she read so re reads over and over until she gets frustrated and then just sits.  She listens to tapes and follows along but then can't figure out how to change the tape.  As soon as I hear it is time to turn it over or change it I go to help so she doesn't get frustrated. By the time we get the tpe going again, she doesn't know where she was to follow along.  I guess the time is coming when I should start to read TO her.  I encourage her to play her piano but she says she can't play any more. I have purchased a "Learn to play Piano" book and am going to try to interest her by having her helpme learn. Yesterday she watched Animal Planet on tv all day while putting together a puzzle.  There are times when I know she is struggling to figure out who I am.  So sad, but we are bumping along as well as we can.  

This forum has been great.  I haven't been here too long, but I have learned so much and am grateful to read the posts of others.  Helps to know what may be coming my way.


worthington
Posted: Friday, January 25, 2013 3:55 PM
Joined: 1/7/2013
Posts: 71


I bought my mom a dot to dot book that goes from 1-10 she has a lot of trouble with this, I can ask her what comes after 3 she can tell me but she has trouble with drawing the line connecting the dots. I have her color the pictures but she just struggles so much it is heart breaking. My husband says I think we need to find things for her to do. I got 24 pc puzzles and she just cant do it, I just don't know what to get her to put in her time she gets so bored so fast. We try in the evening to play UNO I talk her through each of her turns she seems to have fun, any suggestions? I work a full time job and my mom lives with me we started getting home health and that lady plays concentration with her, I really try but just cant sit and entertain all evening. Sorry I'm just trying to figure things out.
Shellasim
Posted: Friday, January 25, 2013 4:15 PM
Joined: 10/6/2012
Posts: 499


I am lucky that my mom enjoys the TBS Channel. She will sit and watch the slap stick comedies on that channel like: King of Queens, The Big Bang Theory, Friends, etc. she wasn't too active in life, and I tried the doing things with her like puzzles, word searches, etc. But found these slap stick comedies are very entertaining for her. Because she doesn't have to follow the whole story line. She sits there and laughs at all the slap stick jokes. Keeps her very entertained. She is sitting there laughing now. She is stage 6e. 

I can recite each episode. Lol. But, she watches them like it is her first time seeing them. 

Shelley


temmom
Posted: Friday, January 25, 2013 5:53 PM
Joined: 10/18/2012
Posts: 25


Gretchen,

Welcome! Wow, it sounds like the exact description of my mother a year or two ago. I would often say "your memory problems", and she also would say it wasn't as bad as everyone thinks it is (anosognosia as mentioned - helpful article!) We may finally be getting through to her as more difficult things happen, that others see it more than she does; you could gently mention this. It's so hard for them to accept, especially when they dont necessarily notice the difference themselves.

 

When we had to change neurologists the new one said "the A word" to her because he thought it was important to discuss what we were dealing with. I was relieved because she'd get angry if I said it and say it was just my opinion. As in your dad's case, her mom died of AD and it was so tough to see her like that. They just can't even fathom that being their fate. So you might want to bring it up if you go with him to the doc, ask leading questions so it would be coming from someone else, a professional.

 

In my opinion, take the pressure off yourself, if he's on meds for it and seeing a doc regularly, he knows something but may not need to hear you say it.

 

Hang in there... there's support for you and you're not alone , as you see!


Iris L.
Posted: Friday, January 25, 2013 6:16 PM
Joined: 12/15/2011
Posts: 13094


Here are links to lists of activities that patients with dementia may engage in:
 

http://www.alz.org/living_with_alzheimers_101_activities.asp   

 

http://www.alz.org/national/documents/brochure_activities.pdf 
 

http://www.caring.com/articles/activities-for-dementia-alzheimers-patients 

 


Mimi S.
Posted: Friday, January 25, 2013 6:48 PM
Joined: 11/29/2011
Posts: 4547


Hi Worthington,

Some less structured activities might work.

Clay. Play-do, in my opinion is too stiff. Craoyla makes one that is softer. Or make your own: 1 cup flour, 1/2 cup salt, tiny bit of water to make pliable. Dye two or three parcels with food dye. If she eats it, no harm. Keep in plastic bag in refrig. Do not model. But you can sit next to her. Leave a big lump in front of her. Just start rolling in a ball, pushing, pulling, etc. See what she does.

Same thing with tempora paints. Better than water colors because it's thicker. Plain paper. Thick pre-school kids brushes. Give her a little of just two colors. You can dabble a bit on your paper, dip a brush in paint and give it to her. many ALF and Nursing homes uses the Aliz. Assoc. Memories in the making.

Soft blocks.

Soft dolls or animals. 

Bring some dirt and some radish or bean seeds. Let her plant them. 


Rhythm instruments, or even an old pot or lid and a wooden spoon, bells, etc. to accompany some familiar music.

Etc. etc.

Let us know what you try and how it works out.


Lovinyou2
Posted: Saturday, January 26, 2013 10:45 PM
Joined: 7/30/2012
Posts: 31


Worthington, I have the same problem with my mom. She is 86 yo and moving into stage 7 . She is totally bored. She hates tv- she just cannot follow it. Her vision is terrible, she can't read, or look at pictures, or sew, or anything. She lives with me and my family, but her care takes so much of my energy and time that I finally just decided that I can't give any more of myself. My husband and teenage daughter need me, as well as my demanding job outside the home. The only thing that really entertains Mom is talking to her about things/people from her childhood, about which I know almost nothing, and simply don't have the energy/patience to do every minute that I'm home with her! She won't "play" with a ball,for example, because that's "silly". She refuses to go for a walk, or exercise in a chair. She will no longer fold clothes, or sweep. I feel guilty because she just sits. Yesterday she stayed in bed for 18 hours. I ask what she is thinking about, and she is going over and over the names of her children (trying not to forget us, because that's all she has left). More guilt. I am trying so hard to keep her out of a nursing home until she doesn't know she's there. Even with her living with me, and me doing every part of her care, I feel guilty. I can't be her brain too.
Myriam
Posted: Saturday, January 26, 2013 11:37 PM
Joined: 12/6/2011
Posts: 3325


As for using the "A" word, it all depends on the person. After meeting people and conversing with them for a while, I will disclose to them that I have Alzheimer's (I am between stages 2 and 3). I believe it is important to get Alzheimer's "out of the closet" if we are to get decent funding for finding a cure. That being said, it's not necessary to tell someone they have Alzheimer's if the result leads to their distress. However, I believe caregivers and loved ones of dementia patients should be advocating for a cure...if for no other reason than that it could happen to them and other members of their family. 
carson2494
Posted: Sunday, May 11, 2014 10:40 PM
Joined: 5/11/2014
Posts: 3


This is my first post, I have been reading posts for several hours and navigating the site. I know this is a very old post, but if you are still out there, I wanted to tell you that your post I truly enjoyed. I have used the "A" word around my mother. Not often, usually when she asks about her illness. We too have had a few laughs when I have misplaced my things I have told her "I have" Half'imers" not "All-imers making light that I am almost in the club. Thanks for a good story!
Shellybell
Posted: Monday, May 12, 2014 4:41 AM
Joined: 9/20/2013
Posts: 1176


Personally, I dont use the "A" word.  It terrifies him.   When he asks whats wrong with him, my response is your memory is slowing down.  May not be the best answer but it calms his down.
bee70
Posted: Monday, May 12, 2014 7:26 AM
Joined: 1/1/2014
Posts: 291


I'm in the same boat with my mom.     We say "memory issues" the majority of the time.   My mom has flat out said she doesn't want to hear the words "Alzheimer's or dementia".      Like others have said, I don't know what would be gained by insisting we use the label.    She has moderate Alzheimer's and there are still plenty of days that she is very aware of her deficits and cries in frustration.    Other days, she insists there is nothing wrong with her memory and is fine.     I suspect that we'll be having more of those types of days shortly.

 


Coyote270
Posted: Monday, May 12, 2014 9:16 AM
Joined: 4/29/2014
Posts: 277


This was a great question and I really loved all the solutions,  I moved my mother and disabled brother with my husband and I about 2 months ago.  Mom is probably stage 6, and mentally disabled brother doesn't have the compression to understand what's happening to Mom.   That's guided our conversation to something simpler for him has turned out to be good for her.  It's been a struggle, but I really feel blessed that they are here and much better than the situation they were trying to navigate before.  And I am really enjoying reading that I am not alone in this struggle.  

 


RinneLBD
Posted: Monday, February 1, 2016 1:00 PM
Joined: 2/1/2016
Posts: 1


Hi Gretchen -- I am curious if a neurologist or a geriatrician has diagnosed your father with Alzheimer's Disease. There are many kinds of dementias and when you stated "depending upon the day," I thought of Lewy Body Dementia which has cognitive fluctuations on a day-to-day basis. LBD is not well known in the public or primary health care professionals, and many group all dementias under the heading of Alzheimer's.

It is critical to have an accurate diagnosis because folks with LBD are highly sensitive to medications that are frequently prescribed to folks with AD.

Other characteristic symptoms include sleep disorders, hallucinations (early in the disease) and physical rigidity (like Parkinson's disease.) You can read more about LBD here:  http://www.alz.org/dementia/dementia-with-lewy-bodies-symptoms.asp.

 

 


Tay46
Posted: Monday, February 1, 2016 1:40 PM
Joined: 9/18/2013
Posts: 167


When my mom was first diagnosed, we did not use the "A" word. We'd use terms such as "memory issues" or "memory problems". However, now that she is in the latter stages (stage 6), we could use the term Alzheimer's and she doesn't know what is  nor does she remember it was even said. Everyone is different. If you feel it would upset him unnecessarily, then don't use it.
 
× Close Menu