Alzheimer's disease

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• September 21, 2012 3:55 p.m.

  September 21, 2012 4:30pm. Nothing prepares you for this. The woman who once brushed your hair and fixed meals for the family,kept the house clean and pulled weeds in her flower garden, the quiet rock has now been silenced. Besides having to deal with mom's Alz, she is also bedridden, but she is such a gem... She smiles a lot and there are those hours when she can even ask a question, remember who you are and mumble about events of long ago.Did I mention that she is 91 years of age and is not on any meds... I thank God every day that she is still with us and there are the days that I may want to pull my hair out, but I think about when I was a child how she took care of all of us. Didn't she want to pull her hair out as well? It's my turn and my experience with mom is priceless!

  - Jenn D.

• September 2, 2012 6:43 p.m.

  Labour of Love I've been my mom's caregiver for 16+ years and quite franckly, nothing prepares you for this degenerative illness. I think the best discription in a book I read was "a long goodbye". That's how I feel with my mom, as it's as though I lost her a long time ago and started when she could no longer recognise me. That really hurt, but in the ensuing years I've learnt the true meaning of love as in spite of the ongoing challenges in caring for her, a deep sense of commitment to her care and doing just what comes naturally as her daughter help me to find solace in these difficult times. Caregiving is difficult for sure but in the end, the spirtual rewards outweigh the bad times.

  - Denise

• August 21, 2012 6:08 p.m.

  It is frustrating to care for an Alzheimer's patient, whether family or an assignment. I am struggling with my own impatience when she starts to get angry with me because I didn't do something her way. Is there a script for responces for this behavior??

  - Maryelyne

• July 18, 2012 1:44 p.m.

  In my work I never see a battle against Alzheimer disease.This illness I have never in my thinking. Because there is a human, men or lady. So my work is with a human in helpless. If I see a patient with Alzheimer disease, I recognize this. And when I see a human in helpless I recognize a human. So I work with this human in problems for the body, brain, social life and so on, to offering more informations (input) for the brain. And then they have more chance in their life. Because the biochemical systems in there brain are better. So they can do more in the daily life(uotput) This is not the rule to be like a child. They are always grown up human. We must change the mind and the social life.

  - No name given

• June 21, 2012 1:01 p.m.

  As the only child of a mother who has suffered from Alzheimers since 1995 - 82 and healthier than most at 60 other than her demential and a father who had Parkinson's and just went to Heaven in April - mind illnesses are something that no one can truly understand until they are dealing with it! My grandmother had dementia and my mother cared for her in our home so we talked about the care they wanted if/when the time arrived. It is so important to have conversations with your parents and children BEFORE any illness hits. This does not solve the problem for the caregivers but it helps when illnesses are discussed while they are capable. Finding the right Alzh. facility is 99% of the battle. My mom is very happy and it is a joy to visit her, 10 minutes and she is ready for me to leave because her attention span off to another activity she wants to attend which is wonderful, she has to be busy and they make sure she is content. Starting medications early really helped too. I love her dearly and I know she is well cared for and loved and is where she needs to be. I could write a book on the funny (and not-so-fun) things she has done but I try to keep the funny ones foremost in my mind. Yes she acts like a 4 year old at times but she is happy and lives in the moment - maybe we all should. With God all things are possible and He gives me strength to see the good in the worst of situations. We are not alone in this battle.

  - June

• June 17, 2012 9:56 a.m.

  Tears streaming but nice to read that I am not alone. My mum well I have grieved the loss of mum, she is a shell but yes I have learned life's lessons. I have learnt the kindness of friends, family and strangers. With mum she only remembers the good times, no bad times or hard times which is one of the few nice things one can say about the big A. I am facinated that she remembers clearly her life before she got married and had kids, it is like that part of her life never existed even when you show her pics. It is a privilage to care for mum. The big A is the cruelest of illnesses to hit a family may not be the crueliest of illnesses but it is cruel to watch someone you love basically lose all that she knew and had. I hope that some day a cure will be found and that governments work to improve care for patients with Alz because one of us will get Alz or some form of dementia, if moi well presently would rather I was told I had terminal cancer. I have learnt to accept Alz but will never forgive it and I have learnt a lot, the skill of comunication, patience, loneliness, laughter, remembering and yes if a fire broke out after loved one photo albums would be next because they are memories and with Alz these memories mean they had a good life.

  - Marianne

• May 29, 2012 12:27 p.m.

  Barb, you've pointed out a dilemma that many caregivers face. Strange how others are so quick to judge. But also we sometimes think others disapprove when they don't. They are just fleeing responsibility. My mother gave me a book when I was a teenager. It was called, "You Are Not the Target." Step aside and let those arrows flying at you just fly on by!

  - Alma

• May 28, 2012 9:10 a.m.

  I guess the real problem that we all face is not how to care for our family members, but rather our guilt over the resentment we experience. We resent literally giving up our dreams and hopes for our future. Taking charge of our destiny can be scary. Letting go of control can also be scary. Perhaps our dilemma is the Mother Theresa syndrome. We want to be the saints yet we want to drive our own bus (so to speak). My family avoids us. They don't even call anymore and they are mad at me! How very convenient for them.But I guess they found a way out of the dilemma, didn't they. They used anger to justify their freedom. Hey, whatever works I guess. I will not hold a grudge. Would I trade places with them??? Yes, I guess I would.

  - Barb

• May 27, 2012 9:37 a.m.

  Dear Brian: I also have a son whose name is Brian, he is 52. No, I never mentioned son/mother relationship, I never gave it a thought, as we tend to dwell on what we are going through. Yes, it must have been horrible to have to shower your mom, plus any other unmentionables. You are a very special son. I live in Canada, I am asuming you are in the states? Could you not get a nurse in to help with the showering, etc? Our Gov't supplies me with 3 hours a week for someone to look after my daughter, but she refuses to let them give her a shower. I get my groceries at that time. Sorry to have undermined anyone else in their caregiving, I was just concentrating on the fact that most daughters look after or place mom, dad, etc. in a nursing home and with me it is reversed plus she is mentally challenged to begin with but not exceedingly so. Continue to take one day at a time Brian and get help, I am sure it is available. God bless you.

  - margaret

• May 26, 2012 8:46 p.m.

  You mention the daughter/mother relationship, but you don't mention the son/mother relationship when the son is the caregiver. This is the case that I fall into. As you know, it's very disappointing. The first 4 months of giving mom a shower were very difficult for me; It just didn't seem right, but I knew I had to get over it. I take 1 day at a time.

  - Brian McAleer

• May 26, 2012 9:52 a.m.

  Well, haven't been caretaking mom for 2 days because I work when I'm not there but slept over last night and am there with my mother today and 1/2 or tomorrow and am dreading it.I want to spend Memorial weekend having fun with my husband and friends and am going to have to sit with my mother who is very hyperactive today.Some days she's very active and others she looks like she is going to die, she gets so weak.Oh, well. Just another day in Caretaker Hell...When will this ever end?

  - roseann

• May 24, 2012 7:22 p.m.

  My Mother denies having Alz. each time it is mentioned as the reason for her memory loss. It might be just two minutes since the last time she was told the diagnosis. Now my father fell, four broken ribs, hemo-pneumothorax, sub-dural hematoma, possible stroke. The foremost rehab facility in the nation only offers vague advice. I want to know if they can manage alone, as I am disabled and after two weeks of ten hour days am done. So, how does a person get the medical community to offer real help and get the parents to accept it?

  - Linda

• May 24, 2012 3:27 p.m.

  my situation is reverse. I have a 46 yr.old daughter who has not only downsyndrome, but Hep C (blood transfusion 1984 ) and is now entering the realm of dementia. She has 3 strikes against her, mentally speaking as hep c also destroys brain cells and most downs succumb to alz. A mother to daughter bond is the strongest I think there is. She is not able to help herself too much anymore.She was an olympic swimmer/bowler and participated in many sports, camping, etc. She does manage the bathroom to relieve herself, but I have to shower her and that now comes with screaming protest. I have to feed her and she refuses to do anything .I do not want to put her full time in a N,Home, and I have had some negative results with respite. I am 74 yrs old, and have been on my own for 31 yrs. I am not asking for help, sympathy, etc. I just thought readers would like to know, that sometimes it can also happen to your child, one that cannot speak for themselves and never really could. My thoughts are also with those of you who are managing with your mom,dad or sibbling. It is difficult, life has some strange twists, but, we do what we must and seek help whenever/wherever we can. It is out there. My strength cometh from the Lord and I can do all things through Christ which strengtheneth me. So, pick yourself up, dust yourself off and start all over again.Listen to some good music and fly away for a few minutes.

  - margaret

• May 24, 2012 12:42 a.m.

  Caretaking my mother is not a beautiful thing.It is honestly a horrible experience.I am watching my mother become psychotic from either parkinson's drugs or the dementia from the disease.She has osteoporosis, congestive heart failure and macular degeneration to boot.My siblings and I have been caretaking her in her own home for 2 years now and it is very difficult to watch her decline.The only lesson caretaking has taught me is that I don't expect my children to be my caregivers.A Nursing home will suit me just fine.I would never want my kids to have to do what I do.It is depressing, time consuming and frightening to watch.I am burned out and can't see a way out of this.

  - roseann

• May 23, 2012 8:26 p.m.

  I had this amazing journey with my Mom. I knew something incredible was happening, but I could never put it into words as beautifully honest as those expressed here. Thank you for taking me back to where I learned how to be what I needed to be with the lessons my own Mother taught me. It was a sweet and precious time.

  - charlene

• May 23, 2012 5:59 a.m.

  My father has Alzheimers. Sometimes he doesn't know me. I try to play the role of his son at that time.I don't tell him that I'm your son or why you don't me.because I think it annoys him and feels sad.

  - Mohammad Ali

• May 22, 2012 6:03 p.m.

  My mother has recently entered an assisted living facility that claims to have a memory care specialty. Mom has medium Alzheimers. She is healthy enough to understand she doesn't want to be there; she wants to go home which is understandable. She is not belligerent; her agitation manifests itself as begging to go home. She is not eating well. She has been there less than a month, and my father and family expected the transition to be difficult. Mom's physical health is very good for 82 years old. The doctor and social worker there want to put Mom on a medication called Risperdal. Does anyone out there know of a resource where we can find if this medication is commonly used with Alzheimers patients? From what I can read, it's used mostly for bi-polar disorder and/or schizophrenia. My family and I are concerned this is too strong for otherwise healthy 82 yr old Alzheimers patient. We want to be sure that any medication used is for HER benefit and not for the benefit of the staff. Thanks for any advice about a resource where I can check about this drug for an Alzheimers patient. I'm so worried that this medication will simply "drug" my mother and make her easier to deal with for the staff. Thanks

  - Mary Margaret

• May 20, 2012 5:30 p.m.

  I would say the same when A husband has Alzheimers and he was always the "lead one" in the home. Some days are tough but I remember My Lord cares and keep on.

  - Leah

• May 20, 2012 9:28 a.m.

  I had a bad day and needed to vent... No worries... I am better now. I checked with her doctor. He said to get all the alcohol out of the house. Problem solved and I didn't have to make that decision. I have a support group in the area that meets once a month. I'll be going. I checked out day care too. It will all work out. There is a fine line between doing what is best for them and giving them the autonomy of adulthood. We would not allow a small child to leave the house in some ridiculous outfit, but we do allow our parents this option because we respect them when they tell us "I like it." Virginia's comment, "What if our roles were switched?" shows the misconception that people with Alzheimer's are the caring people that we are. Not true. Some may be. But my mother would not be caring for me if roles were reversed. She didn't care for grandma or my sister. She admitted to being sick of taking care of Dad before he passed. He was mentally sharp, just very sick. No doubt, she would not be doing this. So I will not measure my own actions by hers. My efforts already exceed her best intentions. I guess my frustration comes from the dilemma that faces me. Do I give her this day or do I live this day for me? Right now it is a bit of both. I will look for life’s opportunities and decide later which path is best. Until then—one day at a time.

  - Barb-

• May 18, 2012 6:21 p.m.

  Please made a decision, Barb, for your mother's sake and your own to contact the suggested agencies in your area. We have Area on Aging where I live and they have given me so many ideas and suggested avenues of help. They will do that for you. We all have our bad days as caregivers but it seems that you are not getting any relief at the present and that makes one very resentful. Especially when the parent did not parent well. Please let us readers know how you come out with this. I am in my second round with caring for a loved one with dementia. This is much different than my first 5 yrs of caring for someone. There is always something to learn and I feel those lessons could not happen any other way. I do feel loney but not resentful as they cannot help their behavior. What if our roles were switched? I ask myself that and the answer is easy. Forgive your mother and forgive yourself and please seek help.

  - Virginia

• May 18, 2012 4:45 p.m.

  My mom is 81 and Iv'e been taking care of her for over 10 years,4 of those years full-time. I never knew I had the depth or capability of such strong emotional feelings until this disease came along. The sadness, the loss of the mother I once knew, the hurt and pain and yes, at times loneliness I felt when my family members and fiance all walked away. And there I was, wondering why? I loved my mom so much and I just couldn't put her into a facility at this point in time. But I was being told I was putting my life on hold and/or throwing my life away. Well, neither of these were right. I have NEVER stopped living; really none of us have. We get to choose how much help we bring in for our moms or loved ones. We get to choose if we want to try to do something different with our care or not. We always have options and their are always people out their who care who we can reach out to. I learned to feel and deal with my feelings and then let them go. I've become more assertive, more organized, and I truely live in the moment. I don't worry about the small things anymore and can talk about and laugh about the most mundane things. It is my Mother and this disease that has taught me this and a whole lot more. She is my best friend and even though she is at a maturity level of around age 3, she seems to be able to teach me something new each week, if I have my eyes and heart willing to learn. I don't ask "why" anymore. Instead, I am thankful...

  - Therese

• May 18, 2012 8:44 a.m.

  Barb there is help out there. You can contact the Alzheimers Association to assist www.alz.org in your area. They have great resources and advice, and can find help for you and your mother. Maybe it's time to let someone else be the caregiver. It's ok to say you don't want to be that person. It could be the best thing for the both of you.

  - Tina

• May 18, 2012 8:29 a.m.

  Concerned for Barb - you are at wits end and melting down. It happens to all caregivers. But you HAVE TO REMEMBER your mom is not lazy, not nasty or dirty. She doesn't know better. It is the illness. If your resentment is as strong as it appears to be, it is time for your mom to be placed in a facility that understands her sickness. And for you Barb, whatever your mom did to you is in the past..she probably doesn't even remember it. You have to move on and get yourself together. Take care of yourself. If that means placing your mom, than do that. That is the best thing you can do for your mom right now. Then once you are in a better place emotionally, visit her and let her know that you do love her. You may be surprised, this illness affects people differently. And somehow, the person affected with it can still pick up on other people's emotions or feelings. Your mom can be feeling like you don't care. Once that changes, other things may change. But you have to help get her there and yourself there. Patience is so very important in this situation and so is love and passion. Help your mom by letting someone else help her. Help yourself by acknowledging what is happening to you and to her and get help. Nothing but prayers and peace for you--I pray.

  - Lynn

• May 18, 2012 7:17 a.m.

  Dear Barb - You sound at wits end. It is very important that you get some help. Many senior centers have day programs for people with memories issues. Also contact your local elder services for help and advice. Maybe it is time to have your mom in a place where she can be cared for. Your Mom is not lazy. She is very ill.

  - Ann

• May 18, 2012 6:01 a.m.

  From the most difficult things in life come the greatest wisdom. I've learned this from my own mother's 13-year battle with Alzheimer's. Through this tragedy, chaos and great family conflict I have learned the greatest lessons in life. It took many, many years, but fortunately with the maturity and compassion I gained from watching my beloved mother succumb to Alzheimer's I finally saw the light. I choose to think that people are not made to suffer with Alzheimer's but that caregivers are given the opportunity to find what they need to go on with their life afterwards. What did I discover from Alzheimer's? I found forgiveness and a much needed path back home to my family. My wish is for everyone else touched by Alzheimer's to be so enlightened, to find strength and illumination to go on afterwards. It may not happen for many, many hears and much heartbreak. But if you open your eyes and your own heart, you may see the important lesson hidden behind the disease. Thanks for this post, Angela, it helped to confirm my own personal findings with this despicable disease. I wish all you caregivers peace and happiness, may you find it eventually.

  - Kathleen