Mayo Clinic Health Manager

Get free personalized health guidance for you and your family.

Free

E-Newsletter

Subscribe to receive the latest updates on health topics. About our newsletters

• Housecall
• Alzheimer's caregiving
• Living with cancer

• April 26, 2009 2:08 p.m.

  To everyone with or caregiver for AD. I found a message board on the Alz.Association/chat room it is the best thing I have ever seen.

  - ruby

• August 20, 2008 12:53 p.m.

  I recently lost my husband of 42 years who had suffered from Alzheimer's for 7 or 8 years. As his condition worsened he no longer remembered who I was, he did not know his way around the house in which we had lived for 26 years, he remembered none of our life together. Being his only caregiver I finally became unable to continue. I placed him in an assisted living facility for Alzheimer's patients, the hardest thing I have ever had to do. After he had been there several weeks he fell and broke his hip, and from that point his condition deteriorated rapidly, soon becoming unable to speak, swallow, etc. No, I do not feel guilty or tell myself that if I had not taken him from home he might still be alive---he fell numerous times at home so he could just as easily broke his hip at home....I say all this to say, don't beat yourself up if you cannot continue to care for a person as ill as to have no memory of any part of his life except childhood---he died thinking I was his mother---find a place where there is staff 24/7/365, who are trained to meet the needs of patients such as those with Alzheimer's. Everyone said to me, take care of yourself....this is the hardest and sometimes the most improbable thing that is going to take place----living with and caring for an Alzheimer's patient is not day-to-day, it is hour-to-hour. Don't feel guilty about having to make the move I made, as terribly difficult as it is to do.

  - bettie

• May 25, 2008 2:04 p.m.

  I have been a Massage Therapist for Alzhermer Clients for 22 years. I have had the privledge of sharing the journey of my clients to the end of their lives. I have read all the coments of the loved ones. PLEASE, dont't stop your Hugs, kisses,sweet talking and most of all, stroking, touching, holding. Always remember, what was the first thing that happened to us when we were born, YES, we were held so close to our mothers heart. Thank you Esther.

  - Marnny

• May 19, 2008 4:09 a.m.

  My wife, Sandra, has Lewy Body Dementia, and now she is more precious than ever. We have been married 53 years, and all of the memories of our life together come flooding back to me. I am not sure how a person reconciles past mistakes in life, but I do know that a person is the sum total of all their accomplishments,hopes and dreams. My wife's dedication to me and our children has never wavered, and she has been there for everyone when someone needed to be there. The most beautiful thing that I have in life now is to be able to hold her, and gently reassure her that I love her dearly, and I shall always try to be there when she needs me. It is too bad that life seems to slip away when we need someone the most;however perhaps as it says in "Ecclesiastics" there is a time and place for everything, and perhaps true love and appreciation is one of those things that comes with time. Roger Plafkin Plafkin Farms(View on Photobucket.com and Webshots.com) Ada, Michigan 1-616-676-0590 plafkin@juno.com

  - Roger Plafkin-Plafkin Farms, Ada, Michigan

• April 16, 2008 7:39 p.m.

  I helplessly watched my mother slip into an Alzheimer fog where she could barely communicate and did not understand her surroundings. She progressed into a 3 year coma that ended this past January. The tragic part was how slowly the disease crept up on her. We saw her becoming more and more emotionally dependent. She became hard to get along with and closed herself off from family members who loved her. We knew something was wrong, but did not recognize the symptoms of Alzheimers. The symptoms are different for everybody. Had we known then that she had Alzheimers, we would have known how to take care of her and her last "good" years would have been so much better- for her and our famiily. As much as we love her, we can't go back and fix things. If you suspect an aging parent/relative has Alzheimers, please seek help. Time is running out and there is help for the patient and family.

  - Sue

• April 2, 2008 4:37 p.m.

  Beautifully written. I will print it out for my children and hope they read it with their heart. I am 81 and have a family history of dementia.

  - Beverly Spencer

• April 2, 2008 6:34 a.m.

  Until a cure for Alzheimers is discovered,people living with the disease deserve a better quality of life because life is not over.Maintaining "emotional memory" made it possible for my husband to have "a life" during the 11 years that we shared his disease, and to recognize our immediate family and say"II love you" until the end.My memoir offers insight and inspiration for meeting the challenges so that the last chapter of life is not wasted in despair. (my book: Everything Will Be Alright: an Alzheimer's memoir will donate profits for research)

  - glory Read

• February 27, 2008 12:33 a.m.

  My wife was diagnosed with early onset Alzheimer's 7 years ago. She was a fiercely independent and intelligent person at the time. During the early stages of the disease she responded well to medications and simply wanted to live life to the fullest, and to be treated as a "normal" person. As the disease took its inevitable toll, her needs evolved, but the need to feel loved and appreciated has persisted to this day. I am unsure at this point as to whether she even knows that I am her husband, but she still has a smile for me when I come home from work, and she still murmurs "I love you" when I tuck her in at night. My point is that people's needs change as the disease progesses, but the requirement for respect and love do not. The method of conveying these emotions may at the end be quite similar to how one would interact with a child, but this does not diminish them in any way. My wife has loved me unconditionally for 29 years, and she deserves no less in return

  - Tom

• February 15, 2008 9:03 p.m.

  I want to bring happiness to my mother that I am caring for in my home, but she can hardly see, hardly hear, hardly walk, gets car sick, gets very short of breath with any exertion. She can't make sense of the stories on tv and doesn't enjoy music. Does anybody have any suggestions?

  - Dot

• January 3, 2008 1:08 a.m.

  Exactly correct. The words I had to read many times. I am the only daughter of george 87 who has AZ and my mom jean 79 is caring for him at home n spain. He swears at her and gets aggressive and he would be so ashamed of himslef if he knew how he is acting and it is so sad as all the things we wanted him to enjoy he cannot. His great grandchildren are a great comfort to him but ocasionally he gets angry with them for no apparanet reason. I wish he didnt have to get worse as he would hate himself. My mothr is depressed but keeps on doing her best. I never realised it would be so hard it seems cruel to make him and my mom suffer. He was such a gentleman and a loving dad and still is underneath I suppose. We love him dearly and want to care for him ourselves. My mother is a wonderful carer but she is wearing out .

  - Linda Jean

• December 15, 2007 8:04 a.m.

  No one wants to stand with empty hands and unfulfilled hopes before their creator at the end of this life. This declaration applies to everyone around you and people you have yet to meet. If we respect each other daily with these values our society would change. My mother-in-law, Anna, has AZ , she is in final stages of AZ and is receiving hospice care in her home and my spouse has chronic Cirrhosis of the liver which is was diagnosed as terminal and he is receiving dialysis. The declaration applies to all loved ones that we are privileged to have in our lives. Mayo Clinic has served our family well and I am also grateful for this website resource. May you and your families find peace.

  - DONNA E CARTER

• December 8, 2007 3:08 a.m.

  This is the sweetest poem. When my father had this terrible disease my brother and sister took advantage of him. Took him to the lawyer and changed his whole will. My sister was very evil to him all his life. My brother did not want to loose money and became a traitor to his father. All I can say to anyone who does this is SHAME ON YOU.. to take advantage of someone with this disease. He really lost out on a lot of love from children and grandchildren that had always been there for him all of his life. That loved him dearly/

  - MARY

• December 7, 2007 4:09 p.m.

  Thank you, Esther, for your lovely declaration. I will send it to our children and to my support group coordinator. My husband has moderate to severe Alzheimer's.

  - Barbara

• December 4, 2007 12:09 a.m.

  I think it is highly unrealist.

  - Rather not say

• November 29, 2007 8:52 a.m.

  i took care of both of my parents, one with alzheimers, till their death 3 years ago. i also work with hospice and have a soft spot for people with this disease. i cannot tolerate workers treating these human beings like children, on some level i know that they are aware. my father and mother deserved the dignity that anyone else deserves. no one wants this disease and some try to hide it. i have found that sometimes hugging, massasing and kissing and telling them they are loved can make a big difference. i used drugs for my mothers frustation, because i know she would not want to be in that state. but did not go the overmedicated way (seroquel) etc. please remember that these people are not responsible for their behavior and never, never abuse them. take a break first. i made sure that my parents had dignity and care and love till the day they died at home, but that is not for eveyone i know. i have wonderful memories of our days together and it was not a sacrifice a priviledge.

  - kim buxton

• November 28, 2007 11:07 a.m.

  Five years ago I was senile. My wife cared for me. At age 67 I am working on my cure. It is fun. Tennis is a demanding taskmaster. Now I am conscious of my internal clocks. I started focusing on clocks a year ago. I noticed I could follow fast balls easily when I first arrived on the tennis court. Unfortunately, this happy condition lasted only a few minutes. The longer I played, the more difficult it became to follow a fast-moving ball. My playing deteriorated, and there was pain in my head. Perhaps Alzheimer's is insulin resistance. That conclusion fits my experience. My master clock had become insulin resistant. About a month ago I noticed my playing no longer deteriorated as I played. I improved. Unfortunately my performance starts out terribly. At first I can't see the ball at all. I conclude my body is replacing ruined cells in my master clock. I guess it is rebuilding the circuits. When it completes the job, I will play better tennis. That's good.

  - Richard Morrison

• November 20, 2007 10:53 p.m.

  What a beautiful declaration. I sent it to several friends and they cried as they read it, also printed it out and gave it to the care facility my husband is in..they do their job very well... thank you Esther, you described AZ paitents very well!

  - Mary

• November 6, 2007 2:51 p.m.

  Good words to remember. We love our Dad, and it is so hard to see him being cared for by others, kind as they are. I'm forwarding this for the care center staff to share with other families & each other.

  - Jan

• October 31, 2007 10:53 p.m.

  very good article. i am a caregiver of my husband i go to a support group and it has helped me a lot. your words helped also. it's hard not to take what they say to heart, but i do have to remember how special a man he was and our 34 years together were good. thanks shirley

  - shirley

• October 31, 2007 3:28 a.m.

  The comments before me have said it all - but I too need to say thank you for this article - being a caregiver to spouses, loved ones, in my case, my father, is demanding, but the words in this article are refreshing and gives me the boost I need to be patient and sensitive to his needs at all times.

  - jackie (jc)

• October 30, 2007 3:30 p.m.

  Thank you - this is helpful for us who have a spouse, as my husband, who has Lewy Body Disease. the last sentence would read just as well "...be as gracious and loving....".

  - Carole

• October 30, 2007 9:07 a.m.

  Thanks, I will print this and keep it on the refrigerator as a reminder.

  - Ron

• October 28, 2007 4:18 a.m.

  I'm printing this out for my family, but even though I have some short term memory and forget words, I don't think I'm becoming senile, I just have brain overload because I am a caregiver and there is so much to do and consider and take care of that used to be the job of my spouse, plus my own regular obligations. My family needs to read this article so that they will understand to treat my spouse as they should, but hopefully never me.

  - BJ Johnson

• October 27, 2007 11:16 a.m.

  thank you for posting this it is exactly the right words i have been searching for to tell my family when the inevitable happens to me I already have very bad short term memory loss and also struggle at times to find the right words for things.

  - Linda

• October 27, 2007 12:57 a.m.

  This Declaration of Independance is very good. As a caretaker of an Alzheimers patient, I know it's easy to forget that the person feels this way even when their mind is not working like it should. Patience and respect make it possible to remember that your loved one has needs that are other than physical. Thank you for posting this note.

  - T Harper