Alzheimer's disease

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• May 10, 2009 8:29 a.m.

  As I sit here this morning, Mother's Day, thinking of my beloved mother who raised me alone and is now in a nursing home with vascular dementia (not much different than Alzheimer's) I am comforted by reading the comments of others who have dealt with this devastating condition. Vascular dementia is much more rapid in onset and deterioration. I have watched my mother progress from a very strong, independent woman of 81 to a totally dependent, delusional shell of herself. She used to loves to eat- her appetite is gone and she cannot feed herself. She loved to drive,shop,travel - now she can't even move herself to a wheelchair. She adored her grand & great grandchildren now she can barely remember their names. Her appearance was very important to her, nails, hair, clothing etc. - now she can't even comb her own hair and couldn't care less. All of this has occurred in 6 short months! As I read your comments I don't know which is worse, the shock of rapid deterioration or the agony of watching your loved one slip away inch by inch over a long and painful time. The only answer, I suppose, is neither. It hurts like hell either way! My heart goes out to all of you who are coping as I am trying to do and my condolences to those of you who have lost your loved one. Let us all pray for solace, comfort, support and peace as we travel this journey with those we love. God bless us all.

  - Barbara

• May 10, 2009 8:14 a.m.

  When my father passed away in Aug 71, I came home to help my Mother get through it and deal with the wedding of one of my brothers (have 2), but did NOT intend to stay. As time past, I turned to someone who was open to my helping Mom, so I gave up my own plans for a career and opted to marry, instead. My home life, growing up, was far from normal, with violence and controlling chauvanism that did NOT create self-esteem or family closeness. Down through the years, I stayed close to my Mom while still dealing with a strained relationship with her and my 2 older brothers. Eventually, I had to move Mom into town and we (my son and I) shared 2 apartments in a house. When Mom developed a terrible infecton and a broken hip, we had to switch everything around at the house so she could stay downstairs where I was to care for her for 3 years. It was not easy caring for her, so many problems developed because of her deteriorating status of vascular dementia but I had promised Mom that 1) I would never put her into a nursing home as long as I could still care for her. 2) I would never let her embarrass herself in any way, in front of any of the family, in any way. My older, prosperous brothers were minimally in the background and Mom should have had their attention, but she ended up manipulating all of us by turning my brothers against me with terrible stories, just so they woud pay attention to her,...poor old soul (died at 89), leaving me alone,..my brothers unapproachable!

  - Rhonnda REA

• April 30, 2009 8:39 a.m.

  I've gotta tell ya that I wish this was available to me when I was going through the chaos with my parents. In 1991, I got married and that afternoon my mother did not remember the wedding. Later, her memory just continued to snip away and I didn't really see it because she was such a crafty person pushing my father into a head on relationship that "we" use to have. Now my father and I had the stronger relationship and she sat in the back ground. I didn't see that until now. He handle things without a peep until his memory started to go to. In 2000, he retired from a part time job and soon after I had to move them in with me. I became pregnant with my first child and found it increasingly difficult to manage their life and mine. I felt like a slug placing them in a nursing home. From 2000-2005 they progressively declined and passed away in February (9 days apart). The point is that I really thought I was the only one going through this at my age (30s). But, just reading this makes me feel so much better. Looking back it was the venting that I felt I couldn't do, because nobody would understand. I didn't want to go to support groups because I had no time for me, let alone support groups. I could have done so many things differently. What I have learned is "to learn", "to change", "to set priorities instead of feeling guilty". And to stop focusing on yourself and let it be about loving that loved one, who needs you more than e

  - DOROTHEA MILLS

• April 23, 2009 8:59 a.m.

  I took my mom to the Dr. for a routine visit and brought home someone I did not know. It was as if she went into the examining room herself and came out a complete stranger. It was a devasting experience. But there is always light at the end of the tunnel for I was able to care for her for two years and got to know her in so many different lights. When going tghrough with a parent you need tons of support and prayer.

  - Betty

• April 21, 2009 10:50 a.m.

  My daddy was diagnosed two years ago with early alzheimers at age 52.I was 15 at the time.It hurts watching him go.

  - Amanda

• April 20, 2009 6:28 p.m.

  My mom was diagnosed with Alzheimer's disease two years ago at the age of 54. I was about to turn 21 at the time. It hurt me day and night, watching how restless and agitated she became day after day. She knew me because she saw me everyday, but I wasnt sure if she remembered that I was her daughter or just a familiar face. It hurt me everyday to know that soon she will probably not know me at all. The most terrifying part about her condition occured soon after. She started to wander and sometimes she would be lost overnight, while the family would be frantically trying to find her.

  - Cheray

• April 13, 2009 1:36 a.m.

  It feels funny to be researching this topic, reading story's and having tears stream down my face. I am a 25 year old Certified Nurses Aide. I have been an aide since I was 15, working with only Alzheimer's and Dementia people. I found out today that my Great Aunt has Alzheimer's. Knowing what happens when someone has this I think that is what is killing me. It has never bothered me to work with these types of diseases. I loved the challenge. I never thought in a million years I would have to deal with this on such a personal level. It breaks my heart that just in Jan. she seamed "normal" like nothing was wrong. My Aunt now has no knowledge of who I am, who my mother is (who she helped raise) I wish I was a lot closer with my family and could help put my 2 cents in with care choices. I wish I would have spent more time with her. I now have so many regrets... I wish I wish I wish. I guess I can not change the past. I feel so empty now like I could have done more even though I know I couldn't have.

  - Lost and empty inside

• March 25, 2009 11:42 a.m.

  Alzheimer's is a very difficult disease and process to watch a loved one go through. My mother was diagnosed five years ago and is now only 56 years young. I miss her so very much and wish my children could have known her before the disease changed her. I have three children just as she does and they absolutely adore her as she does them also. She has a total of six grandchildren and they all love her playfulness and sweetness! My oldest son who is 12 began asking questions about mom a few years ago he seems to understand but my 6 year old daughter and 3 month old do not. We live 5 hours away and have for 9 years i feel like i may have missed her last "good days" moving away. Dad still works full time and i worry about her being alone he works 6pm-3am. She no longer eats healthy or consistantly. He does make sure she has one good meal a day.He has refused to take her drivers license even though 2 years ago the doctor expressed it necessary. She no longer pays the bills due to her "forgetting" to pay them on time and getting shut off notices but he has not taken the checkbook yet. He has to manage her medications now she was not remembering to take them. He is in denial about alot of things...how do i help him accept this and help him cope? As a nurse myself ive helped countless daughters husbands and sisters deal with alzheimer's but helpng my own father has been more challenging.

  - Heather

• February 4, 2009 10:11 a.m.

  Not one thing in your article I just read even comes close to mentioning money. My mom was planning to move my dad from nursing home care to assisted living until she figured out she would only be saving $1,000 a month. My mother is legally blind. She will take him home on Friday. She was crying so hard it broke my heart when she called this morning. The plan was to move him up to AL this coming MON, but she grieved "I will not go broke to get Medicaid so he can stay at the nursing home for $7000/mo." So, the "bring him home" day is this FRI but he is nonambulatory. How does she get him up the front porch stairs? Seems minor to most, but a major problem here. I am disabled, cannot drive or lift. My daughter has devoted at least 1 day/wk. with mom & dad. She works 4-10hr days & has 3 wkdays to visit-usually WED. My mom during dad's last episode (Alz.,breathing difficulties,diabetes,history of bedsores,total incontinence) said she just couldn't take care of him @ home anymore; was told by his MDs she was not to even consider trying to take him home for care. Because of money, she is again in this situation. She is my hero, but our healthcare system stinks!

  - robininpain

• February 3, 2009 8:30 p.m.

  My mother was diagnosed two years ago with Alzheimers. My parents live in Florida during the winter and try as we could this year we could not talk my father into stay in the area where seven of their children live and could help with my mother. My dad is 79 and my mother is 76. It is so hard to try and talk to my mother, I noticed in big groups she just goes into herself and doesn't talk or participate in conversation anymore. I need some advice in how to help my father realize that he cannot care for my mom all by himself. He doesn't leave the house anymore because he says my mother will forget he went out and worry about what happened to him. We have suggested he leave a note for her to read that he went to the store or what ever, but he is afraid she will not see it. My father also doesn't think he wants help coming in because my mother will not know who they are and she will get upset. Any suggestions on how to make him understand he needs help.

  - Linda Pfeiffer

• February 3, 2009 6:54 p.m.

  I'm a 41 year old that put my life some what on hold to care for my father when my family wouldn't step up to the plate. I need some advice on how I can get my family members to give me a day away with my husband with out the worry about my dad. My brother is the biggest load he won't help me at all. How can I ask for help so he will help me. He works part time, I work full time from home. I'm consumed 24/7 with no break. Some one please give me some advice. Thank you. DWC

  - daughter who cares

• December 13, 2008 11:59 p.m.

  My mother was diagnosed two years ago and it took me two years before that to get her in to the doctor. She lives with my husband and me. She still attends her Bible study once a week (with the help of friends who watch out for her), but other than that, she is with me constantly. I find that I never get to have time alone. She is getting much worse, which is to be expected, but I don't get much help. Part of the problem is that she refuses to go anywhere without me. My oldest daughter tries to take her out periodically (once every three months or so). My brother does next to nothing. It is all on me and I'm so overwhelmed and exhausted that I'm near tears much of the time. My mother is becoming more and more demanding of me. Is this normal? I work from home so I really get no reprieve.

  - Rhonda

• November 19, 2008 11:02 a.m.

  My mother was diagnosed with alzheimer's disease several years ago and she passed away on October 6th. She was 77 years old. She was a wonderful, caring person and I will never forget how she was always there for me. I used to talk to her every day and since we lived out of state we visited her several times a year. When she could no longer live by herself my sister took it upon herself to take over mother's care and also her finances. My sister explained to me at the time they were having financial problems, and I realize now my mother was the answer to her financial problems. After my mother had been with my sister for about 6 months, my sister purchased a new home, had cosmetic surgery, and built her daughter a house, etc. When I started questioning her about mother's finances, she explained to me that she was taking care of mother and it wasn't anyone's business what she did with mother's money. After this conversation, she would not let me talk to or see my mother. It was heart breaking. Finally, the doctor put mother into a medical facility where she could get the attention she needed. I was finally able to visit her, but the disease was so bad by then that she didn't recognize me. This has completely devastated our family. I tried to tell myself that since I hadn't been able to talk to her for so long that when she passed away it would make it easier. I was wrong. A day doesn't go by that I don't think about her. I miss her and I always will.

  - Pamela

• November 11, 2008 9:23 a.m.

  My mom has had Alzheimers for about 4-5 years now. My father has tried repeatly to keep her at home with home only to enter her into another home when she became violent. We finally placed Mom in a home close to where I live so that I may visit her along with my dad. Mom is in the final stages of alzheimers she weighs next to nothing and does not recognize anyone. She has trouble swallowing so is limited to soup and liquids which she often refuses. I did not have the best relationship with my mother before her disease but ironically her disease brought us closer together. In the early stages when I would come to see her she would tell me I came in the nick of time and I was her Angel. I will remember those times always and cherish the fact that we were able to make up for lost time in the last few years of her life. Mom's disease is developing quickly and the home does not feel she will live much longer. It has been a long journey but blogs like this one do help. Thank you

  - Dawn

• September 10, 2008 10:27 p.m.

  This has been building up for way too long..and I guess I have bottled up my pain, anguish and grief and just thoughtthat it would go away. I am 27yrs old and I have been dealing with seeing the slow decline of my mother who is only 62 yrs old.. and has been suffering for the past 9 yrs... I am writing or should I say cryingout tonight as I am getting a touch of reality and now realising that she is entering her final stage....how I dreaded this day. She has lost a tremendous amount of weight, and pretty much will not eat.. ofcourse she is unable to do anything on her own, and her walking has slowed down. Mymother stopped speaking since about 2 yrs now, and it pains me that I would do anything to hear her voice again.. It hurst and angers me that I cannot even remember what she sounds like. I want nothing more than to have her hug and kiss me and say I love you. I can only dream.... I see the love in her eyes although they are dead and dull but I see it.. it will never go away. I am having such a hard night tonight, the tears cannot stop running down my face. I know I will be ok.. I will be. My mother would want me to be strong.

  - Grieving

• June 18, 2008 12:08 a.m.

  Taking care of someone with Alz is at once devastating, and heart warming. I found respite in the humorous moments... and treasure them even now that my Mom has passed. She was a sharp cookie, and even in late stages was pretty good at guessing a right answer or pretending to be toying with me when I'd ask if she remembered my name. I'll never forget our one visit to the hospital, and her confusion. She invented a more comforting reason for being there - a client of her old business had "built the building" & she was sure she was there to help him inspect the place. So, off she rolled in her wheelchair, remarking on every little thing. Then, when I arrived, I saw her wheeled in front of the nurses station, and she demanded to know when I'd be taking her to see her client. While I tried patiently to explain that she was in the hospital, she hollered at me "Oh no, you're behind the times!" Every nurse on the floor cracked up! Those little moments, as sad as they are in one way, are precious relief. Remember to see the soul beneath the disease, and know that in the slightest moments of kindness & pleasure, they DO find comfort. You are making a huge difference by being there. You're helping them feel safe in the most frightening landscape of the unknown & forgotten. Here's to all of you who care enough to devote yourselves to being a loving bridge for them.

  - Morgan

• April 12, 2008 7:43 p.m.

  My loved one was in another state and we thought was being taken care of by her daughter. She meant well but did not sit with her to eat and she dropped to 75 lbs. Was ignorant of the disease and let her drive. I would ask over and over take the keys away..One evenening she walked away from her home and was found in a mall after closing. Could not tell police where she lived but luckily had her id in purse. My nephew went to get her and took her home. He statyed for 2 days then sister took over again. She did not have any patience as a caregiver and put mom in a group home. Mom was very upset and confused. We went to visit every 2 weeks until we felt it was better to get her out and bring her to our state. Hospice told us to put her in an aszheimer facility only. They are trained and that is all they focus on. Mom seemed so happy and loved all the animals they kept on the property. Unfortunately she fell 2 weeks later and had a hip replacement. Was put in a rehab facility and was walking with assistance. We talked her through her therapy until the news of a bedsoar. It got out of hand and the infection is what took her life. A blesssing she did not have to suffer for 10 years, but lack of medical attention when she was under nurses care every day was so hard to grasp. Our hearts were so broken. I want the laws changed to protect our loved ones whom cannot express their pain. All facilities should be required Alzheimer training classes as part of the requirement for hiring. M

  - miss sophie

• April 4, 2008 8:07 p.m.

  My father is in the final stage. I had to move him to a home 2 years ago because he lost all sense of personal safety. After 3 trips to the ER in as many months his doctor took me by the hand & gave me these simple words of wisdom, "You will not be able to do this forever...for his sake as well as yours." He was moved into a home from the hospital 2 years ago. I cried all the way home and for weeks afterwards. Then I noticed he looked better physically than he had with me for a while. I knew the Doc had been right. Soon after he was in a wheel chair as he "forgot" how to walk. A period of having to restrain him followed because he did not know he could not walk. I visit him weekly at random times & days. He is in a loving/caring/spirtual environment. He does not recognize me any more. I am either a stranger or his sister, no longer his daughter. He started to loose weight 6 months ago and This week he has started to refuse food. This is the first week I have felt totally helpless in a while. I cried while discussing his current state with his RN. I love my Dad, I know he is already gone mentally. We are just waiting for his body to catch up. I lost my Mom to this disease in Nov 1997. I was young, my Dad took care of her until the end. I did not realize at the time what her ailment was. They choose not to tell us. I know my Dad will be happy to be reunited with Mom!!! To all of you caregivers, my applause & support!!! Take time for yourself

  - Kathy

• April 3, 2008 8:03 p.m.

  Well last time I wrote anything on this site was just March 17th. Now I'm writing to say my wonderful Dad passed away yesterday. I can't not believe how fast this horrific disease had totally consumed my Dad and now he is gone after only 3 years. Sunday my Dad did not sleep at all, he hardley slept any days, and then finally fell asleep about 7am on Monday. My step Mom tried to wake him up about 7 that night and he wouldn't wake up. She called 911. She called me around mid night and said they were putting my Dad on a ventalater until I got there. He lives in another state. I got there around 4pm the next day. My Dad was so small. This young 57 year old man looked 100 years old. All his organs were starting to fail. We told them the doctor that we were ready to take him off the ventalater, the doctor told us he wanted to wait until the next day because he wanted another brain test done. We were all so upset, no matter what we said they made us wait. So we sat with my dad all night and talked to him and told him how much we loved him. They finally took him off ventalater at 10am and he was gone at 10:23 yesterday. My Dad is a doner and everything that is still good will go to someone in need. My Dads brain will be donated for research for this dignity robbing disease. It has to be stopped. Thanks for listening, I will still visit this site offten. Good luck everyone and may God be with you all.

  - Charlene Milligan

• March 30, 2008 4:40 p.m.

  Soon my parents'62nd wedding anniversary will be here. My father had Alzheimers for several years and died just last fall. We were lucky that he saved money and was able to be cared for in the home along with care from my loving mother, myself and some siblings. My question is, what is the best way to help my mother on the first wedding anniversay after his death? I know she will be sad. Thanks, Megan

  - Megan

• March 23, 2008 12:11 p.m.

  We lost our mother this last October . I will always remember my son calling to tell me. After 9 long yrs she is finally at peace. I triesd for 7 yrs to keep her home but it was really hard on my family and the hardest thing was to admit that it was out of our hands. You know when the time is right to move your loved one from their home in your heart and mind. Remember the person that you really know has shared every thing with you and given you the answer by example or words along the way. Are they safe? Are they eating enough? Are they wandering or falling? Are they driving and could they potentially be a harm to innocent others that they may hit or could they cause an accident and be hit? If the answer could even possible be YES then they should no longer drive!!! Remember they are not able to make the proper decisions sometimes so if you know in your heart that they are unsafe you may have to make the decision. "when you were young I held you close and kept you safe so that one day you could take my place." My mother use to say that as I grow up. I really miss her but find so much hel;p in her teachings that I know she left knowing her job was done and in November we were blessed with a grandchild for us do pass on her wisdom and her teaching to. Please remember Your family member is locked inside of a body that now needs you to lead the way for the rest of the journey. They depend on those around them to keep them safe and help them to live out the rest of thei

  - Debra

• March 11, 2008 2:57 a.m.

  Alzheimers has recently taken the life of my beloved "Nona" who meant the world to me. Once I became an adult I realized the wonderful wisdom and knowledge she had given me throughout her 82 years on this earth. As her granddaughter I was blessed to have her show me four wonderful generations(her, my mom, myself and my beautiful daughter). She gave me more than I could have ever hoped for in a lifetime This disease caused my grandmother to sometimes get very angry because I believe she didn't know what was happening to her mind and that in turn would make very confused and annoyed. I thank god for the love and support that my mother gave her. Because she gave up her life for over 10 years to care for her night and day. Hard part as a family member is that one day they may not remember who you from one day to the next. But always hold on to the memories you hold dear to your heart. Because even though they are not there in mind they are there in spirit.

  - Lisa Medlin

• March 6, 2008 4:56 p.m.

  My dad is 62 and has alot of the symptoms of Alzheimers. Unfortunately he has no insurance and has assets to prevent him from getting covered by the state. I did get a doctor at a clinic to listen to me and he started him on Aricept.This all started summer of 2006-my mom informed me alot of their bills weren't getting paid-he is the sole provider, He was getting lost driving and numerous accidents., hadn't paid any state,federal,or local taxes for 6 years.Needless to say this last year he has been saying the same phrase "I wanna die" over and over and has been getting aggressive with my mother {she called 911 and he was 302ed so sad because he didn't even know why he says that or recall what happened}he's paranoid that when she goes somewhere she wont come back ,daily conversations are repetitive of the same subject,he could spend the weekend at my home and not even remember being there,he doesn't know the day,date,month or year most days. A CAT scan showed atrophic changes

  - Pam

• March 2, 2008 2:34 a.m.

  I am a primary caregivers for a friend of mine,who has been like a brother to me for almost 29yrs,&who has unfortunately diagnosed with early onset Altzheimer's disease,diagnosed about 4 years ago.He's now 60. His level of functioning has steadily declined since that time,lately far faster than expected. He has no relatives here& most of his other "friends" have conveniently made themselves unavailable to help with respite for us even take him out for dinner or for a weekend to give us a break,show him that they still care. This both saddens&angers me too. I work full time. Still, I have kept him with me for the most part,every weekend,evenings days&anytime I am not working for the past 4 yrs.I set up his meds,&MD appointments usually go with him, have in in adult day care 4 days per week,do bills, cook for him,laundary&more.I know he's scared too but today after his 2nd wandering incident in 4 mo's,home again safe&asleep. I think I'm recognizing t

  - Susan

• February 27, 2008 6:38 a.m.

  I noticed Mom "changing" almost ten years ago.She will be 90 in June!My siblings were in denial for quite a while.She still lives in her own home.We take her meals to her and take care of her finances.How do you move her out of her home? When? Mom isn't your usual old lady.Never was content to sit and watch TV or converse! Always busy. When do you make the decision that she can't live in her own home?I think moving to a nursing home would kill her~~my sister disagrees!What is the answer? Bess

  - Bess