Alzheimer's disease

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• January 27, 2013 8:58 a.m.

  My father passed away from Alzheimers a few months ago. I was saddened by the way my mom treated the disease. She tried to hide it from her very best friends. Embarrassment and denial took over causing her caregiving to turn to extreme anger. My personal challenge right now is to support and inform others who are in this situation. I never gave up on my dad. He was a fighter until the end. He just needed to be understood and nurtured. I had a hard time when people would say he "wasn't my dad, it is the disease". He was truly my dad the entire time. I had a new appreciation for his character as he tried so hard to cope with his condition. My heart and prayers go out to others who are on this journey. It is truly a part of life. A time to rethink what path your life is on.

  - Sherie

• November 19, 2012 1:55 p.m.

  I am pleased to read empowering articles like this that seek to change the way we are looking at Alzheimer's disease. For the last ten years, I have been sharing the power of music, movement and touch to thousands of men and women suffering with AD. I have documented inspiring stories, quotes and steps on how to improve the quality of life for everyone involved. Alzehimer's Disease: Simple Remedies that Heal Now - How Music, Movement and Touch Can Ease the Disease. I am looking for experts in the field to read it before publication. AlzAlive - It's for all of us.

  - Kat

• November 15, 2012 12:10 p.m.

  Even the hospital staff are sometimes uninformed about the needs of dementia patients. When I read about patients repeatedly calling "help me! Help me!" it brought back a sad memory of when my mother would do that. She would get a staff's name and call "Help me janice" over and over. When I came into her room she would tell me they were making her call people's names.She understood that what was happening was not right but I didn't get it. But I happened to be in the patient's bathroom with the lights off when a staff crept into her room and whispered "Helen, call Mary." They thought it was fun to get her to harass different staff by continually calling out to them. I should have came out of the bathroom right then and confronted the staff but it took me a moment to digest the situation and by that time the person had left. I complained to the hospital but since I didn't know who was doing it, nothihng came of it.Maybe if I had taken it a bit farther at least they would have had a meeting to alert staff that such behavior was not appropriate and I would not still carry the hurt to this day. How I wish someone would have approached mom and given her a hug instead of using her cries as part of some hurtful game.

  - linda

• October 15, 2012 2:11 p.m.

  Continued Oct 15 I waivered for awhile and I got angry about my treatment, and I found myself questioning things of why I felt useless, and out of place, I felt like I couldn't accomplish anything, I felt un needed.My doctor didn't even treat me with respect.My co-workers of 9 years did not talk to me, or know how to react (stigma of Dementia, like we lost our voice and thoughs all at once) I started reading and discovered an advocate for myself as for many other people, it was Mayo Clinic. I now have a purpose in my whole life again,they have helped me discover that I am a real person. I continue to relay to my doctor and CEO of my clinic how important it is to understand our diagnosis, and our treatment,which after 9 months, changes in protocol have just been made for the physicians :). I just recieved an e-mail from our Chief of Staff from my clinic Friday. I start helping next month at our 2 New Memory Cafe's. Helping people to be more useful in their community. We as patients (the same as those with cancer who become too ill to function,(like we may)can all make a difference early, before it's too late. Persons with Dementia do have a message...and can help, we need to listen. This makes me feel whole again.

  - Catherine

• October 15, 2012 1:51 p.m.

  A friendly note for Ruth, Angela is one of the few persons' who can almost see inside of us.She is my "inspiration" to keep doing what I can to help other persons recognize,Their capabilities With Cognitive Impairment,or early Dementia.I was diagnosed 2.5 yrs ago with Cognitive Impairment,I do not look forward to maybe dealing with Dementia later on. At this point I can think for myself, but sometimes my "thinking IS impaired (like bad judgement at times), But as Angela stated: As a society, we fail to remember that although persons living with dementia may be losing their Cognitive powers, their capacity to Experience and Feel as human beings is largely Unaffected. Their need to Give and Receive love, feel useful and worthy and maintain purpose remains unchanged. I add, "Like the stigma...remains unchanged." But trying. To help people understand; I saw this devastation first hand for 9 yrs, my Dad, with Dementia,we cared for him at home, where he passed. When we got his diagnosis in 1972, we practically aided him "disabled",his Dr gave us the book The 36 hr Day and said "bye"( stigma of the unknown) he could still say my name in the 8th year,he Was aware we were there for him,he walked till the last 6 wks. My friend got a cancerous brain tumor, she did not always know us,she fed herself,did that make her not whole? When I was Dx I was discharged at work, my family was scared.I waivered for awhile, and got angry about my treatme

  - Catherine

• October 14, 2012 3:31 p.m.

  I am in total agreement with the idea that people with dementia need to be included, and need to have their emotional needs recognized and met. We as a asociety have not done well with this aspect of dealing with dementia. However, I think the author gets carried away with her rhetoric - to claim that people with dementia are "whole and complete" simply is not true, and to foster that people does a disservice to both the person with dementia and to the caregiver: the practical problems alone would make a caregiver crazy if they were trying to believe that the person they are caring for was whole and complete. The attempt to have a demented person look after their own needs is a total frustration if you do not recognize their limitations. A much more helpful article would be one which would help us to recognize the emotional and social side of our loved one, while assisting with meeting all of the practical needs without trampling on just those aspects of the person we're trying to care for. It's that balancing act which for me is the hardest, along with trying to get institutions and those in the helping professions to recognize the humanity of the person we're all trying to assist.

  - Ruth

• October 10, 2012 9:46 a.m.

  For Rose, I do not understand or know of Pick's disease, but I do of Alzheimer's. I compliment you on your "challenging the care" your husband was getting. It is heartbreaking for a Care-Partner to have to care for their loved one alone, without also having to "figure out" the care he Should be getting from his doctors. We must be able to trust them. I can only say...keep searching, I may suggest also looking at clinical trials if his illness would allow him to paricipate. Keep seaarching, and praying, you will find the answer. If you have family that can help, a sister or brother,ask them to help you check things out, you need some support for yourself,to help "sort things out", or maybe a friend who is still at your side,or as we have,a nurse at our church who may help. Check as many areas as you can, the right path will be shown to you, trust your thoughts,you were right in doing what you did for him, he cannot protect himself. Walk with your faith in this illness. God Bless You in your care giving.

  - Catherine

• October 9, 2012 4:25 p.m.

  My husband is 52 years of age and has Early onset ALZ and Pick's disease. It has been very difficult to get help for someone of his age. Recently we were deceived in believing that he would be put into an ALZ's ward at a hosp. in Dothan, AL. He was put on a behaviorial ward and it was 3 days before the Dr. even called. After a week I took him out. The entire week he was given chemical restraints. Nobody including the Dr. who treats about 32 Alzheimer patients would see that his "negative" behavior was because of some basic need not being fulfilled. After he was released I had him in the ER of another hospital where we were told he had muscle strain, and was in pain. Caregivers, please stand your ground for your loved ones. I was told I was taking my husband out of the hospital AMA. I just smiled and said maybe so, but it WAS WITH GOD's Advice. We still have to find a program for him but we will.

  - Rose

• October 8, 2012 11:14 a.m.

  to Debbie,please take you mam into the care, and drive with her to any places she wants. This is a heavy job, but your mam wants to do anyhting and you help her. So she has a good feeling and can do anything, because this is your thing, shw wants it. In this time your mam need this. And so she will see the wourld, and her brain will work. The information are the input, and then the brain cells are better in connection. I am a caregiver for a long time, I wrote a book Rediscovery Recovery.

  - Susanngab

• October 7, 2012 1:48 p.m.

  Amen on the relationship & medical care. We tend to forget that these folks are still human. THERE BUT FOR THE GRACE OF GOD GOES ME.

  - Nancy

• October 7, 2012 7:59 a.m.

  Thank you so much for all your letters, Help and kind words. "Have a Blessed Day"...

  - mary

• October 6, 2012 11:57 p.m.

  You are an Angel....Angela, we are Blessed to have you on OUR side. Craig, Thank You for the Courageous post.Keep posting, everyone that is a Care-Partner needs your words. It is hard for them to see within the Hearts of their loved ones. You make it possible for them to help "understand" their Importance of their commitment and love. Even though there is no "verbal thanks"....the thanks that can be spoke, are still there! For those of you who can,if you if you "think you can make a difference "you can" Check into any programs or help your physicians have, and if they are still just "concentrating on cancer and heart disease....ask them why. You are a patient too, or a Care Partner, and you DESERVE Help, demand it, make some demands on how your spouse can be helped.It's ok to ask where you can get information, and if they don't have any to offer, ask them why they spend so much on information for other illnesses. (but be nice, ....I got results... after 10 months of not letting them "off the hook" Canvas your personal physician, your Neurologist, your Neuropsychologist,and the CEO of your clinic. (that's where I started with the CEO of my clinic.) We are just as important as a cancer patient. Bless all the Care-Partners and anyone who aids a person with any type of Dementia, look for the Tools that can help. HABIT helped us and Craig.

  - Catherine

• October 6, 2012 11:30 a.m.

  My mom has dementia. In 2010, she took a bad fall and broke C1&C2 in her neck. Before this fall she was experiencing MCI. After the fall, the dementia seemed to speed up. I moved her to a assisted living community in April, 2010 and then in June, 2012 I had to move her again to a community that offered more assistance with dementia. My frustration as her daughter is that she doesn't participate in many of the activities and tends to sit in her apartment all the time. She calls a lot and "wants to move" and get a house or wants to "drive". I know this can't happen. She just can't or won't accept where she is at this time in her life and we repeat the same thing over and over. My husband and I just recently joined a support group at the community where my mom lives and I hope to get some tools as to how to deal with this. Sometimes I am so consumed with guilt...I don't know what else to do!

  - Debbie

• October 5, 2012 2:11 p.m.

  My wonderful wife of 56 years has had Alzheimers for apporximately ten years. It has been painful to see her decline mentally. She was a wonderful writer and communicator. She wrote radio and television commercials in the early sixties. She became editor of the the alumni newspaper while I was a student at New Orleans Baptist Theological Seminary. Her mother and grandmother also had AD. Several months ago I found it was helpful to have her rest in the afternoons for a couple of hours. I discovered our TV cable service has a channel "Music Choice" which has a feature of "Easy Listening" instrumental music of the "oldies". I tune in to this channel as she begins her rest time and find that it is very helpful to calm her nervousness and anxiety. As a retired Minister of Music I know the value of the music she recognizes in helping to calm her during her rest time. MUSIC IS GREAT THERAPY!

  - Ron

• October 5, 2012 11:23 a.m.

  Finding memory care day care is very difficult. It almost seems that she will need to be institutionalized in order for me to keep working. I love my job, but I am unwilling to put her in a 24/7 facility yet. Rochester,MN

  - Ken

• October 5, 2012 10:48 a.m.

  I was shocked to see the # of LBD mentioned. I have found it impossible to find a neurologist who wasn't spaced out, playing God. It is so hard for me, after 51 yrs w/Dennis, to accept my lowered status in his eyes - has trouble remembering my name - wants to go home - I am wife #2 - and on & on. Sometimes we are not married. My feelings get so mixed up. I am terrified I will become physically unable to care for him. I spent a month making a memory book for him - REFUSES to look at it. ALL the "experts" say a memory book is the best thing to have available. Well - there is always one exception. To all of you riding the ferris wheel w/me (up and down), I send you my prayers that we will all be blessed w/the faith, strength to face whatever is upcoming. Bless all of you.

  - Linda

• October 5, 2012 10:00 a.m.

  Never in my wildest dreams would I have ever thought my dear husband of 62 years would be going through this and never would I have thought our friends would become as scarace as they have lately. I agree with Elizabeth's comments. I could have written them myself. I have never been around anyone with dementia and had no idea how to cope or how to act. Seems like every case is different.

  - Helen

• October 5, 2012 8:09 a.m.

  I thought I might share the insight our grandson had , at the age of 9. We have deliberately shared with all friends and family the fact that my husband is on the path of Alzheimer's, though it is still early. And my husband has been able to speak about it with his grandson, giving him permission to ask questions directly, which is very grounding for both of them, of course. But our grandson asked his mom, separately, "Will Papa Phil forget who we are"; (he had experience with his paternal great grandmother and her Alzheimer's). Our daughter's response was, "Well, he might never get to that point, and if he did, you might be a grownup by then. But if he did, do you remember Great Grandma?? Well, at the end of her life, she didn't remember who people were really, but SHE KNEW WHO SHE LIKED and LIKED to spend time with them." Our grandson nodded, thought a minute, and responded, "Yeah...it's like they are still a person, but more...like a cat." I think this reflects his wonderful compassion, and his ability to recognize so well the capacity for the exchange of love and tenderness, without requiring more. I believe his insight reflects great respect, the respect he gives to sentient beings, including their beloved cat.

  - pam

• October 5, 2012 7:21 a.m.

  I have to agree with the comments of JG. Living with spouse who has dementia for past 3 years; it is very clear that he is disabled. No matter how much we want to treat him as a "normal" person it is impossible. The real person I married is long gone. This does not stop the love I have for him, but it changes to a different kind of love. Decision making is at the level of "would you like soup or salad", and even that can be challenging for him. I do appreciate Lund's paragraph re "As a society, we fail to remember that although persons living with dementia may be losing their cognitive powers, their capacity to experience and feel as human beings is largely unaffected. Their need to give and receive love, feel useful and worthy and maintain purpose remains unchanged." This is what should be stressed.

  - Muggins

• October 5, 2012 3:15 a.m.

  What to say? My dear wife is finally realizing that she facss Alzheimer, in the sense that it is now sinking into her mind. She has known, this for a good time, but now, I think, she has come to its realization of what she faces. We have been married sixty years, and now face a future together that swells my heart with love. She thinks people will think less of her. I try to protect her from this, and I do not bring up the subject of Alzheimer. Our life will go on together. I just felt like expressing myself in this note. Probably not doing a good job of it. I do not talk to anyone about her condition.

  - Alfonso

• October 5, 2012 1:39 a.m.

  Thank you for this post. I'm not comfortable with the notion that increasing awareness is a "fight"; I see it more as a quest for compassion. Many people have learned to be afraid of disease; Alzheimer's is just one of the diseases that inspires fear. As caregivers, we can work with compassion and understanding to defuse the anxiety. It reminds me of a phrase a Buddhist friend once used, "defeat them with love." Easier said than done, but many of the comments on this post have demonstrated that. Rather than fight, just spread the word. I was at an Alzheimer's caregiver support group tonight and was struck by how many of the participants are battling the prejudices of their extended family members: those who are unable or unwilling to contribute any meaningful support to the primary caregiver, but who nevertheless feel qualified to offer advice and - most disturbingly - question their integrity. It seems to me that caregivers need a vocabulary and tactics for deflecting negative "help," especially when it is no help at all. Thanks again.

  - Wendy

• October 4, 2012 9:46 p.m.

  My biggest frustration is finding social contact possibilities for very pretty 88 yr old fran. She still wnts to flirt, and find a companion to hold hands with while watching an old movie. Lots of help offered for me..need help to find other memory challenged folk for her!!!

  - celia

• October 4, 2012 7:43 p.m.

  My husband of 45 years was diagnosed with Alzheimer's about 4 years ago. The two of us own and run a family real estate business . My biggest challenge is trying to cover his confusion, mistakes, and difficulty in doing the things he always did. I try to have patience but it is really hard because my husband seems like a totally different person. He actually has no clue that anything is wrong and no matter how gently I have discussed his difficulty doing all aspects of our business he refuses to retire. I am stressed all the time and appreciate reading this blog for any clues on how to cope. We joined a support group in our town but it was not relevant because all the people were much older and retired. ( I am 64 and my husband with Alzheimer's is 67) I would love any feedback if anyone has experience with a spouse still working with Alzheimer's .

  - Elizabeth

• October 4, 2012 7:35 p.m.

  Thank goodness for an article like this; people have to understand, including the caretaker, that a person with dementia, in our case Lewy Body Dementia and Parkinsons, is struggling to maintain their ability to think and remember all of the things that were important to them; they want to be part of life and everyday living. In the case of a husband and wife, to hold each other and express love and affection, regardless of age, is so important; it gives a person a reason for living and hope for the future.

  - Roger

• October 4, 2012 7:02 p.m.

  I finished reading the many comments and congratulate all you for your understanding and strength in caring for the one you love. This is a painful journey but with God at my side daily I will gladly suffer along with the woman I will always love. I look into her face and see our lifetime of sharing and love, and that will never fade. I hold and treasure our memories and life together - this has been God's greatest gift to me. And yes, I have weak moments but always bounce back with prayer. I lived with her, loved her, will stay with her, and will end life with her. That is all I want or need for now.

  - Archie