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

• November 21, 2009 12:53 a.m.

  having just read kates message i can relate to her. my husband is currently in nursing care and in the late stages of early on set alzheimers he has been ill for the last 5years he is now 56. it has been heartbreaking to see my childhood sweetheart slowly die. how did you cope with the end stages of this illness

  - lynnette

• November 8, 2009 8:38 a.m.

  I had my very 1st agression and walking and not his home,thing going on with him.He wanted to go home but ,it's in another State.I've had problems be fore but so far I could handle them myself,but like others of you, it's mighty tough huh? I know I should get help with him,I thought I was doing ok with 1st alerts on the doors locks and etc.But now it doesn't seem to be enough.I keep him busy and active but he is at the point he still wants to go.[one track mind].He knows me but doesn't if you know what I mean! I feed him,give his meds ,make sure he showers and changes cloths that are set out for him,take him with me when I gro.shop.We're together 24/7.Doctors say he's healthy as a horse.He's just forgetting everything and everybody.I feel bad loseing the one I loved for over 40 yrs,to this Alz.I'm trying to hold on,but to no avail,I know it.I guess I should put it all in Gods hands.And have Him guide me to do the right thing at the right time.Pray for us,and the ones who have gone before us. As I pray for them.

  - Pat

• October 28, 2009 11:04 p.m.

  I am trying to heal from the pain of loosing my mother. She had a slight case of dementia, then she fell and incurred a traumatic brain injury, but was still able to communicate for 3 or 4 months, until a nurse overdosed her on insulin. She went into seizures and was never able to communicate anymore. After the fall, mother was transferred to a Transitional Care Center at a local nursing home. She was neglected, abused and treated awful. I went to see her everyday and sometimes two-three times daily. However, since mother could not communicate, they knew she couldn't tell who mistreated her or abused her. I reported this to staff, lawyers and noone did anything. I was not physically or financially able to care for her at my home, but Oh, how I wish I had done the best I could and tried. My mother died Feb. 21, 2009 after a nurse suctioned her on Feb. 16 and suctioned part of her tongue off and suctioned so deeply her mouth was cover with blood. The nurse at the hospital stated mother had been suctioned too deeply. They said the nurse had suctioned something up into mother's windpipe or lungs and she could breathe except with oxygen and struggled for days to breathe before passing away on Feb. 21, 2009. The nursing home would not tell me what really happened She had a U.T.I., Sepsis, Dehydration and her glucose readings were over 400. Insulin would not even bring it down. I feel the nurse killed my mother and I am having a very difficult time forgiving her

  - Missy

• October 26, 2009 12:41 p.m.

  I'm an alzheimer's survivor. I think we need a term for family caregivers who survive taking care of someone with AD. Cancer has "survivors", and while AD doesn't, what happens to family care providers should be considered a triumph, just like surviving cancer. Family care providers live with grief, often depression, social isolation, loss of income, unplanned for health expenses, chaos and anxiety for many years. My husband was diagnosed with EAOD at 49, I was 43 at the time. He lived at home for 4.5 years, then in long-term care for 18 months until his death in 2003. I spent 6 years caring for him, loving him, and watching my smart, funny, loving & handsom husband disappear and turn into a wraith from endless pacing, combative, unable to epxress himself, all of his front teeth missing from a seizure-related fall, and a big scar across his forehead and nose from another fall. Alzheimer's broke my heart daily for the 6 years he was ill. Since his death, I' struggled with undiagnosed post traumatic stress disorder, that I'm finally getting a handle on thanks to a good therapist. Spouses who care for someone with EOAD have very different issues from those in theor 70's and 80's, yet i see nothing about it in blogs or journal articles. Is there anyone out there who is also an "Alzheimer's survivor" under age 55? It's a very different journey and needs to be recognized accordingly. I just can't find anyone like me!

  - KATE

• October 4, 2009 7:18 p.m.

  My mom has Mild/Moderate Alzheimer's. Her mom did as well. I helped to care for her mom, and now I am helping my stepdad care for my mom. Now, I at 43, I am showing signs of early-onset. My neurologist is setting me up for more testing. I have 3 kids, the youngest is only 9. I pray for the children in our family.

  - D.

• September 30, 2009 5:37 p.m.

  My husband of 40 years is in the last stage of alzheimer's! He has had this for 8 years and I have him at home with me. I was devastated when he was diagnosed and with each stage of the illness, my emotions couldn't seem to catch up with the progression. I would get use to my husband a certain way and in the blink of an eye everything would change and I would have to change as well. I remember telling a friend of mine, the only emotion I feel is sadness. I was worn out from this feeling and my doctor told me I was in a depression and prescribed Zoloft. This has been a miracle drug in my life! My husband goes to an amazing day care facility 6 days a week He loves going every morning. It gives him a sense of purpose in his life and I have my life, which I fill with friends. This is also a disease of isolation, in which the caregiver is taken hostage. I joined an alzheimer's support group and it has been truly wonderful for me. When I am feeling down I call one of the women in my group and we wind up laughing until we cry. I will have no regrets in the care I am giving my husband! I too take it one day at a time. I've learned to live in the moment. This is an "ugly disease" in which the minds of our loved ones are taken and the hearts of the caregivers are shattered! Thank you! God Bless all of us!

  - Barbara

• September 27, 2009 8:00 a.m.

  On July 16 my 6 1/2 year journey down the road from mild to moderate to late stage alzheimer's with my husband of 38 years ended. During those years we grew closer than I ever thought possible. I learned that I was not the most important person on the face of the earth. It became my privilege and my joy to be his 24/7 caretaker, and I learned to reach out to others and ask for help. My faith and my reliance on the Lord deepened and I came to a place of peace with our situation that was comforting. It was not an easy journey, but I found out I could manage each day and find humor and joy in the little things. Thanks to hospice I was able to keep him home until he passed on. I went through a grieving process then, and I am grieving his absence now, but I take it one day at a time, and when I have a good memory, I write it down and put it in a glass bowl. When I'm having an especially hard day, I can pull out a "good memory" and it eases the pain. For those going through the caretaking years, accept help from others, be kind to yourself and know that you will one day be thankful you were there for your loved one.

  - Naomi

• September 26, 2009 5:36 p.m.

  This message is for Cristina. You are not alone, my mom was diagnosed three years ago at 62 and I am 30. It's scary everyday and I often worry that I am showing signs if I forget anything. I have decided to have genetic testing if I decide to have kids to stop it here. If you want to talk - I would welcome it. foxfire_joy@yahoo.com

  - Crystal

• September 8, 2009 10:17 a.m.

  My mother was diagnosed with AD in 2001, when she was 61. I also had an aunt from my father's side of the family who had early onset Alzheimer's. My mother currently lives with me and my husband, which means I can see the devastating effects of the disease every day. I am 29 years old and I confess that lately all I can think about is how likely it is that I will develop this disease and probably pass it on to my children (I don't have any, yet). Seriously, it's getting harder every day and I feel like I have no one to talk to about this. My husband tries to calm me down by saying that a cure is on the way, but I'm really quite desperate. I don't know what I should do or whether or not there's anything I can do...

  - Cristina

• September 3, 2009 11:42 p.m.

  My precious husband was diagnosed with Alzheimer's in 1998 at the age of 54. This has been the journey of my life. I have learned a lot of things during this time, the most valuable being that it is not a bad thing to give up your own life for the sake of someone you love. Some nurses told me a long time ago that I must always show him love or he will know that I am only doing what I have to do, after all he is the one that had to lose everything. To this day he will try to kiss me, although it may end up as a lick on my face. He is home and I have a caregiver 20 hours a week which helps a lot. Our two children have been wonderful to help too, but one thing you learn is to get help where you can and don't worry about who does not want to help, it has to be in the heart to do any good. My husband is unable to do anything, he can not even move his body in bed. He does eat well but it takes a long time and a lot of patience to feed him. I just play some nice music or an interesting video. I am 60 now but I still have to work, lucky I have my own small business and am able to be flexible in time, but find you have to get away from it all sometimes to get renewed to be a good caregiver. I am fortunate to have someone good to take care of him so I can get away for a day or two - I never ask my children to do it because of all of his personal needs - it costs money to do that but helps a lot. We work very hard at taking care of him but have very few complications.

  - Sharon

• September 1, 2009 8:04 p.m.

  I am the oldest of 3 daughters. About 10 years ago our mother passed away after being diagnosed with Alzheimer's a few years before. Now, my darling youngest sister has been diagnosed with early onset Alzheimer's. She is so scared. It is so sad to see her this way. She has been given Aracept and is involved in a Alzheimer's study. She is under the care of a general practicioner. I think knowing what is ahead of her is really the worst thing she is experiencing. The doctor will not prescribe a anti-depressant. I think she needs one desperately. She has a caregiver a few days a week, I take her one day a week. I had her today and it seemed that she was on the verge of tears all day long. Her husband does not seem to realize how severe her depression is. How can I do more for her? I would love any suggestions.

  - Lou

• August 15, 2009 8:40 p.m.

  August 15, 2009 This past Monday evening, my beloved dad passed away from early onset alzheimer's disease. He was diagnosed at age 54, but my mom saw symptoms at age 52. He was 62 years old. My dad was a brillant and caring man that just deteiorated before my eyes. It is hard to lose parts of your loved one each and every day. He had a series of strokes, that finally caused his death. My mom was an angel and cared for him at home and never sent him to live in a nursing home, for which as his daughter, I am eternally grateful and can never forget. I love my dad deeply and need his death not to be in vain. We donated his brain to scientific research to try and find a cure for this disease. No one in his family had the disease, which is unusal. There is not alot of support for eoad, but my mom and I are trying to establish a support group in the area specifically for eoad caregivers and families. To all those with a loved one, you are in my thoughts and prayers.

  - Kimberly

• August 9, 2009 8:21 p.m.

  Aug. 9, 2009 My husband was diagnosed with dementia/alzheimers May, 1950. I was so very shocked as we had just retired and I thought his problem was due to not having much to do. It is now August and I had to put him in a nursing home July 3, 2009 as he was progressively getting worse and trying to leave our home. It broke my heart to see the changes in the man I have been married to for 56 years. One night I had to call the police cause he wanted to leave; they called the ambulance and was taken to the hospital. I was told he could not come home, that he would have to go to n.h. as it would be better for him and for me. He went to nursing home and was so heavily drugged at first I could not talk to him. Now, he is on just one medicine a day for agitation but he can no longer talk to me, nor can he walk and I don't get any answers. He has always been the strong one and has taken care of me. I hurt so badly to see him like this, but know he is being taken care of and I have to care for myself also. We have 5 children, all grown. I pray someday Alzheimers will be eradicated and no more robbing of a person's mind and dignity. I am thankful for the p.c. doctor and neurologist who took care of my husband and encouraged me, and the nurses at the nursing home. My heart goes out to all who witness a loved one go through what I have and am going through. I cry, and then try to be strong, but it still hurts. Please find a cure....

  - Wilma

• July 30, 2009 6:54 p.m.

  After dating through high school and college and being married for 44 years, my husband and I divorced in May 2009 due to damage to his left frontotemporal lobe caused by strokes. After noticing major changes in his personality including chronic major depression, my husband went on to quit four jobs and then became involved with another woman whom he has been living with for two years. With excessive spending and travelling being a big issue, I sought medical and legal counselling and was advised to divorce my soulmate immediately. My husband also wanted a divorce but would not proceed with it. Now, and after years of strong bonding with my spouse, I long to take care of him but am unable to do so. I feel as though my life will always be incomplete because I cannot be with my former husband until the end. Since he also has aphasia, talking on the telephone with him is difficult. Grieving seems to be all that I have left, although I spend time with friends and travel a little. Dating other men leaves me feeling even more empty and lonely inside and brings on even more longing for my former husband. Is this scenario common for others who have/had a loved one with frontotemporal lobe dementia/vascular dementia?

  - Carol

• July 14, 2009 11:27 p.m.

  We have had to place my mom in a nh as she was no longer safe to live alone and wouldn't keep the caregivers we'd hire to help her. Watchin her decline now over the past 2 yrs has been awful. finding caring thorough doc's is impossible and keeping the Md/facility from over medicating her is a challenge. Being in the medical profession myself makes it harder as I've seen how issues affect patients and know the potential damage that can occur.

  - Norma Lambert

• July 10, 2009 9:40 p.m.

  My husband and the father of my 4 children died in 2006. I was depressed to the point where I laid on the couch all day-and slept most of the time. My heart ached. After 51 years of marriage- I was so alone..My children do not live close. This spring- a classmates husband started calling me and his wife had died almost 2 years ago...We talked on the phone a lot- then dated and started talking about marriage, We are both 71. I became so close to him. Neither of us had anybody to love on us for years, and being Christian we wanted to wait for sex. Then we got input from first my children, then his..June 3rd...He came to my house to talk about it, and was the most loving, clinging caring person I have ever known. Or hearts melted together and he left blowing me a kiss as he left. That night he called and said they want me to give it up with you- I wish you the best of everything...Bye To this day I have not seen him or heard a word from him. However- family found out he was seeing someone else - and she has told them he gave her a promise ring...I was so shocked- and my heart aches with pain. I hurt so bad I can't think about anything else and nothing helps. I am on Citrolopram-but I cry all the time...even now.I know he is a liar-and did not have the courage to say I want to breakup with you--I know we would have had problems when the lies started exposing theirselves.I do know he is on Aricept-but I watch VERY close to see symptoms, and saw none. I just want to not hurt.

  - Dolores Long

• July 3, 2009 3:26 p.m.

  What can I add to the pain and hurt that others have already expressed? My mom is in the middle stages and I am her primary caregiver as my siblings are all out of town. They are as helpful as they can but many decisions are left up to me. I make use of the local Alzheimer Society and it's wonderful staff and support groups. I have to take that next step and arrange for mom to go into a nursing home, hopefully the same one where my dad is who is in declining health himself. The burden seems too hard to bear somedays while still trying to work, be with family and friends. Many days I wish to just escape somewhere far and remote and be alone to sort all of this out. I worry that I too may get this awful disease that is slowly stealing away my beloved mother.

  - Sad Sue

• June 4, 2009 9:39 p.m.

  MY DAD WAS DIAGNOSED WITH ALZHEIMERS OCTOBER 1, 2007. WE WERE TOLD HE COULD NO LONGER BE ALONE AS THE DISEASE WAS QUITE ADVANCED. DAD SUFFERED WITH PERIODS OF DISORIENTATION, ETC. FOR YEARS, BUT WE WERE ASSURED THEY WERE DUE TO TIA'S OR MINI-STROKES. DAD WAS LIVING ALONE AT THE TIME, SO MY HUSBAND AND I BROUGHT HIM TO LIVE WITH US. WE HAD HIM HERE UNTIL WE COULD NOT CARE FOR HIM ANY LONGER. DAD HAS 4 CHILDREN OF HIS OWN AND 3 ADOPTED CHILDREN. WHEN I CALLED FOR HELP, THERE WAS ABSOLUTELY NO RESPONSE FROM ANY OF THEM. I THINK THIS HURT NEARLY AS MUCH AS LOSING DAD TO THIS AWFUL DISEASE. IN MID-APRIL, DAD SUDDENLY HAD PNEUMONIA. THE LOWER LOBES OF HIS LUNGS HAD CRYSTALLIZED DUE TO SMOKING MANY YEARS AGO. THE PNEUMONIA SUBSIDED BUT WEAKENED HIS SYSTEM WE WERE TOLD. THE ALZHEIMERS TOOK OVER AND DAD PASSED AWAY JUST A SHORT TIME LATER. WE ARE GRATEFUL THAT DAD WENT QUICKLY AND DID NOT LINGER AS DO SO MANY OTHERS. DAD HAD SUCH A DIFFICULT TIME DEALING WITH THIS DISEASE. WHEN HE CAME BACK TO US PERIODICALLY, HE WOULD CALL PERIODS OF TIME "BAD DAYS". "JUST HAD A FEW BAD DAYS" HE'D SAY. I MISS DAD TERRIBLY, BUT I MISSED "DAD" BEFORE HE ACTUALLY PASSED. WE ALL JUST NEED TO PRAY THAT SOON THIS AWFUL DISEASE WILL AT LEAST BE TREATABLE. OUR THOUGHTS AND PRAYERS ARE WITH ALL WHO ARE DEALING WITH THIS DISEASE. GOD BLESS.

  - ANNA CHRISTINE

• June 2, 2009 3:44 p.m.

  I lost my grandmother to Alzheimer's disease in Feb 2001 and I know what this disease can do to the person that has it and the loved ones that are the family members. My grandparents raised me from when I was a baby. And when she was going through the frist stages of this disease what was hard for me to see her go through the stages of memory loss slowly and beinging able to remember her loved ones names. And my grandpa took care of her as long has he could by him self and it took a toll on his health and he just could not handle the care she needed and that is when he had to put her in a nusring home in Eau Cliare WI. That was the hardset thing that he had to do his soul mate their where together for 55 five years before she pasted away in Fed 2001.

  - Jennifer Leigh Redfield

• May 27, 2009 2:31 a.m.

  Am I the only male caregiver? Is it Alzheimer's disease, or injury produced dementia? Guess it doesn't matter too much, because the results are the same. After 24 years of marriage, my first wife and divorced. I spent a couple of lonely and miserable years as a 50 year old, single man. Then one day a miracle happened and I met the fantastic lady who was to become my new wife! When we had been married for about 15 years and were enjoying a very happy and active retirement, my wife suffered a closed head injury as a result of a horse accident. She spent 3 days in intensive care, 3 days in intermediate care and over 3 weeks in rehab. She left the hospital with about 50% of the cognitave abilities as she had beforte the accident! The doctors said it might take from 6 months to a year for her to recover. Never happened! Although her physical injuries were well healed by 1 year, her memory and cognative abilities continued to decline and she was diagnosed with "probable Alzheimer's disease". At this time, 7 years after the accident, she, at age 66, is under 24/7 care, fortunately at home. She has occasional "accidents" and is quite confused most of the time. She can still feed herself, but needs to be told to eat! I was her sole caregiver up until about a year ago, at which time I could no longer do the job myself and maintain my health. I have been attending a support group since her diagnosis, and am now trying to figure out what to do without her and

  - Richard

• May 16, 2009 11:21 p.m.

  I look at my mom and I see behind her beautiful green eyes the confusion and be wilderness as this disease slowly steals hers memories...My mother had me late in life, She was 40 .... I am an only child and very close to both my parents... I remember as a child I used to always worry that my parents would die before i grew up because of there age. I lost my father in 2000. I sold my house and moved in with my mom so she wouldn't be alone. My mom was always so active independent. She was a branch manager for a bank for 32 years...Watching her struggle to do simple tasks such trying to dress self and even sometimes she forgets who I am is heart wrenching...I Watch her slip away from me a little bit everyday... I did grow up and became R.N so that I would be able to take care of my parents in there later years... Never in my wildest dreams did ever imagine that my mom would forget her daughter’s name...I refuse to put her in a care home... I will care for at home till her last breath… I will cont to maintain her dignity, and remind her of times past... I will hold her memories and mine close to my heart and never forget how blessed I am to have such a loving and wonderful mother.... I pray for every family that has a loved one being ravished be this disease...As I sit here writing this I can’t hold back the tears & deep sadness I feel...I hope that they will find some kind of cure soon and help stop or prevent Alzheimer’s from erasing the memories of the people we care abou

  - A Loving Daughter

• 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