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CARENOTES / Past Carenotes/ Discussion Forum

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 03/07/08

I am a caregiver for my mother who has just been diagnosed with early stage Alzheimer's.  She has a hard time accepting this, and is living in denial.  This  makes it  more difficult for me to care for her, as she refuses to see the doctor, take medication etc., always insisting that nothing is wrong with her.

How can I get her to understand and accept what is happening to her?  I know it is difficult, but I am hoping that someone has had this experience and can guide me in the right direction

View Comments


name: Kristina Proctor
location: Phoenix Arizona
Email: kristina.proctor@bannerhealth.com
Date: 07 Mar 2008

Comments

You may not be able to get her to understand or accept what is happening to her - period. In addition to memory loss, Alzheimer's Disease also brings personality changes, behavior issues and other problems to the table. Why agitate her? Make it easier on you and tell her only what is necessary to get her to the doctor and to take her medication. At the end of the day, will her acceptance really change the outcome? Unlike other progressive disease processes, it is difficult to involve an Alzheimer's Disease patient in decisions regarding their care and this difficulty only becomes worse with time. Take care of yourself and make your day to day tasks as simple as possible.


name: Loris
location: VA
Email: Tuppertil@yahoo.com
Date: 07 Mar 2008

Comments

Make sure there is a Power-of-Attorney in place whether it's you or someone else. It will only get harder and, without a POA, it will be much harder to exercise "tough love" which you will have to do if she's already refusing to do what needs to be done.


name: Nancy P
location: St. Paul, Minnesota
Email: npierson@winthrop.com
Date: 07 Mar 2008

Comments

We have the same problem with my mother, although the doctor (very young) is saying she only has the beginning signs of dementia and not Altzheimer's, even though she has all symptoms. She gets mean and cries and refuses to talk about it. Will NOT take any medications. I told her doctor she was not taking them. He had a serious discussion with her and confronted her about it and she just said she did not need them, they did not help and then sat silently. We have an awful battle ahead and unfortunately my father will have the worst of it with her caregiving and her anger to him. We don't know what to do either, sorry.


name: Vincent
location: Maine
Email: vfrazz@tidewater.net
Date: 07 Mar 2008

Comments

I suggest you contact your local Alz organization or local Adult Daycare group to find another woman of similar age in the same situation who would be willing to chat with your mom at her home or?...my wife is a real gabber, and she'll talk to anyone about her Alzheimer's, and she has amazed and comforted 'Zeimer's and caregivers alike with her decade-long "normalcy"...


name:
location: Ohio
Email:
Date: 07 Mar 2008

Comments

Contact your local Alzheimer's Association,there are Chapters or organizations all over the USA. they have booklets, videos etc and can help you get info... Local Libraries will be able to put you in touch with resourses too... you can contact the Social worker at a local nursing home and they will be able to get you info, check out nearby support groups and the internet for more resourses too. Live Each Day don't think of it as she is dying or suffering, just make each Day enjoyable, take notes of memories as you and your mother talk about family and events of the past like a Family history.. Let her enjoy LIFE and don't push her , just encourage her and give her lots of love and Hugs. Take lots of Photos of her Happy moments for you to remember the good times years from now... God Bless You and your Mother.


name: Diane L. Macbeth
location: Boothwyn, PA
Email: dlmacbeth@verizon.net
Date: 07 Mar 2008

Comments

I was touched to read your question. I know what you are going through and it's not easy, but be patient. My mother was the same way 3 years ago. In a way, it's good that your mom is a bit resistant. .at least she has some fight left in her. Three years from now she won't. Although my mom has her moments where she refuses medication and insists she's 'not crazy' - don't give up on your mom and more importantly don't give up on yourself! There was one special moment about two weeks ago that mom and I were sitting quietly just talking. I came to her with her medication and she looked at me and said, "What's wrong with me? Will this go away?" I wanted to cry, but I had to be strong. It was my opportunity to explain to her that what was happening to her was not her fault and that she was not alone in her struggle with this. We sat for an hour and I patiently explained what was happening to her and at that 'moment' she accepted it. Each caregiving situation is as unique as the patient you are caring for. All of us as caregivers have to love our way through this. There is no other way. My mom is 81 and was an artist, craft person, raised dogs, had a Girl Scout troop - you name it she did it. And through all of this she taught me the Golden Rule...'do unto others as you would have them do unto you'. Love her, be patient and take care of yourself. You will have 'moments' that will be so special you will be glad YOU were her caregiver.


name: L
location:
Email:
Date: 08 Mar 2008

Comments

I have worked with Alzheimer's patients for 15 years and am also the daughter of one. Your mom may not want to accept her diagnosis or may not be able to comprehend it depending on how far the disease has progressed, but she should acknowledge that she is "forgetting things". If you simply tell her that the pill is to help her so that her memory won't get worse or simply that it is her "memory pill" this may make it easier to accept. If you refer to her doctor as helping her with her "little memory problem" then this is less threatening to her and you may get more compliance. Often it is the language we use or the emotions we have that cause fear, confusion and denial in the person afflicted. Keep it calm and simple with as few words as possible.


name: LORRAINE CHALMERS
location: Unionville On
Email: lorrainechalmers@rogers.com
Date: 08 Mar 2008

Comments

I have worked with Alzheimers patients for 15 years and am also the daughter of one. Your mom may not want to accept her diagnosis or may not be able to comprehend it depending on how far the disease has progressed, but she should acknowledge that she is "forgetting things". If you simply tell her that the pill is to help her so that her memory won't get worse or simply that it is her "memory pill" this may make it easier to accept. If you refer to her doctor as helping her with her "little memory problem" then this is less threatening to her and you may get more compliance. Often it is the language we use or the emotions we have that cause fear, confusion and denial in the person aflicted.Keep it calm and simple with as few words as possible.


name: Beverly
location: Austin
Email: bevk23@sbcglobal.net
Date: 08 Mar 2008

Comments

I'm in Stage 3 of this illness with my mother and in the beginning it was very hard. We both were in denial until it clicked that I needed to do my best to keep things as routine as possible and then slowly bring it to the surface. I did a lot of research and read a lot of articles, and recommend the book The 36 Hour Day for your journey with this disease. Mine is almost worn out, and I bought a copy for my siblings to read also. I don't know what kind of meds she taking - - as each situation is a little different depending on what other ailments they may have, but in Stage 3 we crush the meds and put it in applesauce or jelly. Maybe that could be an option for you, too. Also, I would tap into your local area Alzheimer's Association ( you can search the web for a local office. www.alz.org) and they are wonderful source of information as well as help. You might also begin attending a support group. The Alzheimer's site may have some listed in your area, and their hotline is wonderful. Hope this helps. Blessings!


name: Callie
location: Iowa
Email: grammydeere3@msn.com
Date: 08 Mar 2008

Comments

I work in an Alzheimer's Unit, and run into this all the time. So far I have not found a way to make people understand what is going on. A lot of times when I go to give medication I have to tell them it is for their blood pressure or any other health problem. Sometimes this works, sometimes it doesn't. I have crush the medication and put it in food, check with the doctor or pharmacy to make sure you can do that as some medications can't be crushed. Alzheimer's is a very hard thing to handle you will have ups and downs, as she goes back in time in her mind. She will see her world a lot different then you do. The easy way to handle this is to go with her and not fight it. It will be a very hard thing for you to do as you see her slipping away. But live for the days when she does remember who you are and how she loves you, I have seen this over and over again, it may be for 5 min. it may be for five days but it does come. And you will hold on to those moments, I know it may sound cruel but if she chooses not to take medication don't push it as it will be one of the last things she can control in her life, as time goes on you will be controlling every thing. Use this time to say the things you've never said or to thank her for the things in life she has done for you, you will look back on it and know this time was one of the best times you had with her. I believe this is one of the cruelest things in life to watch a parent go through. My thoughts will be with you.


name: diana
location: orangevale ca
Email: sacsegal@comcast.net
Date: 08 Mar 2008

Comments

I just discovered this wonderful program called dementia whisperers, my husband and I went to one of their workshops. It's a valuable source of information for your whole family, their web site is www.dementiawhisperers.com. You can contact laura@dementiawhisperers.com to find out in you are where they will be hosting a workshop. Diana


name: Patsy
location: Texas
Email:
Date: 08 Mar 2008

Comments

I agree with Kristina; just do whatever it takes to get her to be cooperative--even if it means agreeing with her--no arguing!--and telling "white lies" to gently coerce her. I have NEVER been a liar, and at first it bothered me greatly to tell Mother "white lies"--but it was in her best interests. Say it's her daily vitamins--"preventative medicine"--or that it's her "well woman check up"--whatever works. A former Support Group friend once told us that "arguing with an Alzheimer's patient was like having a battle of wits with an unarmed person". How right she was! Loris is also right about the POA--VERY important must-have piece of paper. I would also say it is VERY important for you to find a good Caregivers Support Group--it saved my sanity during my years of dealing with it. Good luck and God Bless.


name: Lynda
location: Texas
Email: lyndabwilliams@yahoo.com
Date: 09 Mar 2008

Comments

Have your read the 36 Hour Day book? It was a big help in the early stages with my Mother. You have one group of Alzheimer's patients who know they have a problem and the other group that never knows they have a problem. My Mother was of the group that never new she had the disease. Some of the things that helped me was to stay a friend to my Mother...if she wanted to say the moon was green...then it was green. Try not to divide yourself from her so you can help sit up financial things...like bank accounts, etc. Even if your Dad is still alive if they will sign a Power of Attorney to one of you children and a health care one will help a lot. I could go on forever...best of luck.


name: Priscilla Pittman
location: Arkansas
Email: priscilla.pittman@alzark.org
Date: 10 Mar 2008

Comments

You cannot reason with a person with Alzheimer's. You simply do what you must do as a caregiver with love and respect powdered with love-stories. Sometimes denial is a safe place to be when you are afraid of the things you see happening to you. You may take her with you when "you" go to see your physician. There are so many things that can cause memory loss and many of them are reversible, have you talked about those issues? Some never consent to seeing a physician. A copy of the global-deterioration scale might help you determine loss, and this in turn would help guide your communication.


name: Libby Costa
location: Massachusetts
Email: Lcosta@coastlineelderly.org
Date: 11 Mar 2008

Comments

I suggest you look for a local "Early Stage Alzheimer's Support Group" and a Care Manager who specializes in, In-home Dementia Therapy. This individual could be a great asset to you and your mom, she can be the link between you and the doctor. Your local Area Agency on Aging can also guide you in the right direction. Ask about the Family Caregiver Support Program they can provide support, assistance, respite and education. Here are some websites that are quite helpful www.alzinfo.org, www.alzheimerstraining.com/online_counseling_services.htm this site is for on-line support. Here is a 24 - Hour Helpline number provided through the Alz. Association, 1-800-272-3900. Take good care and good luck in your caregiving journey.


name: Ken Souza
location: New Bedford, MA
Email: ksouza@coastlineelderly.org
Date: 11 Mar 2008

Comments

You can find information on your local Area Agency on Aging (AAA) or Aging Service Access Point (ASAP) by calling 1-800-AGE-INFO or by logging on to www.800ageinfo.com


name: Beth
location: Spring Valley, CA
Email: bethg@cox.net
Date: 12 Mar 2008

Comments

My mother, who has Alzheimer's, has been living with us for 4 years now, and the most helpful thing I have learned is that my mom cannot deal with reality. She lives in a new reality, which doesn't often correspond with ours. So the challenge is to be creative, distract, redirect, reward, whatever it takes to keep her happy, yet cooperative. Give up on making her understand, and just focus on managing each situation in the best way possible.


name: Laura Wayman
location: California
Email: laura@dementiawhisperers.com
Date: 27 Mar 2008

Comments

It will be helpful for you to understand a different way to approach your communication and relationship will provide you with a different and more positive result and response with your mom. From now on if you only tell your mom what she can easily handle emotionally, such as not attempting to convince her she has dementia, but redirect her to what she can accept, will ease the strain. She now exists in a very different dementia wonderland and speaks a different language. I know this perception to your approach will give you immediate relief. Our company, The Dementia Whisperers, is dedicated to supporting, encouraging, and training family caregivers just like you with tried and true techniques and solutions to exactly what you and other caregivers in your position experience daily while caring for memory challenged adults. You can get more information by visiting our website at www.dementiawhisperers.com. We recognize how difficult this situation is for you, and we are here to support you. Laura and Lynn


Name: Elizabeth Quackenbush
Location: El Cajon, Ca
Email: bethcloberiza@yahoo.com
Date: 07/23/2008
Time: 07:33 PM

Comments

Your mother is just on her early stage, lets face it, in every situation problems whether young, adult or old age ...denial is always there. This time you have to be a good listener to your mother let her verbalize what she wants to say, this is the time she needed you most, you have to prolong your patience. Just listen and there will come a certain time that it will be your turn to say what you have to say and she will listen. And i can say also that you have somebody who had pass with this case also you can introduce her to your mom, or other wise go to a support group. But always remember that the best medicine is the care of the family.


 


 







 

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