Oct 272015

Photo credit: Heather Weston

Two years ago, when B. got her diagnosis, I made the same assumption that almost all newcomers to this challenging subject do. I thought it was all about the loved one who now had Alzheimer’s. She was the patient — or maybe the word I used more often was “victim.”

She was, and she is. But the challenge, I came to see, was just as formidable for me as it was for her. I don’t mean to sound cavalier here. Any of us, given a choice between having Alzheimer’s and caring for someone who does, would choose the caregiver role. I know that. I don’t ever minimize what B. faces every day, and how that challenge grows. But being a caregiver is hard. It is definitely the hardest thing I’ve ever done in my life. Growing up in Bed-Stuy at the time I did, breaking out of what was one of New York’s toughest inner-city neighborhoods, finding jobs as a very black man in a white man’s world — that was easy compared to taking care of a wife with Alzheimer’s, day by day, hour by hour. Here are a few helpful suggestions I’ve learned through experience.

    • Read the literature. I know that sounds obvious, but the fact is that most caregivers read very little. For one thing, they’re occupied with caring for their loved one. I get it! But frankly, most feel they’ve done enough by just listening to what their doctor tells them. They really haven’t. There’s so much to learn in terms of diet, activity, ways of coping . . . I think you can get a lot of that from our book, but I’d urge you not to stop there. Knowledge helps. It helps your loved one, and it helps you, with specific suggestions on what to do and what not to do.
    • Learn as much as you can about the disease. Maybe this seems like extra homework, but I got fascinated by learning the science of what Alzheimer’s is. I found it oddly comforting to know what doctors have figured out so far—more so to learn what the paths are to a possible cure.
    • Get in touch with your local branch of the Alzheimer’s Association. There are many wonderful organizations out there, from those promoting research and drug trials to commonsense help for caregivers, and we list a number of them in our book. But the national Alzheimer’s Association is in a class by itself—a fount of information, with an unequaled network of local branches to offer all kinds of hands-on help.
    • In groups of three or more, don’t treat your loved one as if she doesn’t exist, and don’t refer to her in the third person. The most loving and well-intentioned caregiver can find himself icing his loved one out of the conversation—with her sitting right beside him. It’s understandable, especially if the disease has progressed to the point where the patient has lost all ability to follow the conversational thread. But even severely impaired patients tend to sense when they’re being excluded— I’d put that more in the spiritual than scientific realm—and to feel hurt and humiliated as a result.

Visit bsmith.com to learn more about the book Before I Forget.
  • Don’t try to finish a loved one’s sentences. Give her time to respond. If she can’t retrieve her thought after a long pause, gently prompt her with what you think she’s trying to say. When this started with B., I made the classic mistake of letting my frustrations get the better of me. B. would let a sentence trail off into space, and I’d jump in to finish it for her. As soon as I knew what she was trying to say, I’d go there first. I still get impatient—I’m only human—but I’ve gotten a lot better at letting B. take the time she needs. I try to be zen-like about it. I mean, after all, what’s the hurry?
  • Avoid being condescending or critical at all costs. It’s debilitating and simply doesn’t work. I tell you this from bitter experience. Before Alzheimer’s, B. and I never— ever—argued. Frankly, that wasn’t because we were both so level-headed. It was that B. was! I was the one with a temper; B. was just gracious enough to keep me calm. When her Alzheimer’s came on, B. was still calm—but I no longer was. I was mad—at fate, and yes, too often, mad at B. Slowly, I got over that and came to terms with the obvious. Alzheimer’s wasn’t B.’s fault, and my lashing out at her—when she forgot something I told her ten minutes before— was of no help or justification whatsoever. Here’s one thing that helped me: I started consciously keeping my conversation with B. to questions that could be answered “yes” or “no.” Instead of “What would you like to wear today?” I’d say “How about these black pants?” In the supermarket, same thing. Not “What shall we have for dinner tonight?” but rather “How about this salmon? With a little salad?” It made for a much happier B. She could participate in the decision and not feel left out—or, worse, hurt by a snappish remark from me.
  • Above all, never lose sight of the dignity within the human being who has the disease. This is so, so critical. Maybe it’s the most critical point of all. Patients get worse with Alzheimer’s—so far, that’s the unavoidable truth, without exception. As they do, they lose physical mobility along with their functioning minds. This is a terrible, terrible process for them—and for those who love and care for them. But even those with severe Alzheimer’s retain their humanity and remain, somewhere inside, the people we knew. We have to honor that, always, even to the last, both for their sakes and ours.

About the Author: Dan Gasby is husband and care partner to supermodel, restaurateur, magazine publisher, celebrity chef, and nationally known lifestyle maven B. Smith, who has younger-onset Alzheimer’s.

Dan has been a television media sales executive and a television producer for both network and syndicated programs. He helped publish and launch wife B’s eponymous magazine and helped cofound her lifestyle retail brand.



  128 Responses to “A Note to Caregivers from Dan Gasby”

  1. B, I read about you some time ago. Since that time my life has changed. August 26, 2014 I was diagnosed

    with early onset Alzheimer’s . I was devastated. I am 76 and a widow.

    I live by myself and none of my children live by me. My daughter in Black Hawk, SD is the closest of my children. Susie always went with me to Dr’s appointments. I took sugar completely out of my diet. I now weigh 116 lbs. I walk my dog most every day. I know my life will one day change and it frightens me. I am only 5 ft tall. I talk to God all the time and I know he hears me. I get tired of reading labels when I go grocery shopping but it is worth it. I pray GOD will give you the strength you need each day. I don’t know what I will I will do when my life changes. I will have to go to a nursing home or whatever. God is in control of all things. I lift your husband up as he is a very special man. God Bless you both. Barbie Bocott, my email address is bbocott@bresnan.net.

  2. This is extremely well stated. Wish I could communicate directly with Dan. Men are not supposed to cry but I sobbed as I read this.

  3. God Bless you both, thanks for sharing your journey with us all. Continue to cherish the moments. #ENDALZ

  4. Thank you, sir, for your insightful article. It came at a very time for me. My husband has Alzheimers as a side effect of his Parkinsons Disease, so in addition to the AD disability, he has the physical tremors, freezing and falling to deal with – and as his caregiver, I have the spills, the broken things, and the worries of him injuring himself most of all. Your comments about remembering the humanity and dignity are timely because I am the one like you and he is the one like your beautiful wife.

    Thank you for taking the time to share.

  5. Hi Dan I met you and your wife some time ago and visited your restaurant many times even in Sag Harbor. I remember many years ago when the restaurant was still on 8th ave, I mentioned to your wife B that I had bought her cookbook a while back and that I had tried her key lime pie recipe and one ingredient amount was wrong. I never forgot the look on her face and from her eyes like that was unbelievable. Not negative at all but she looked shocked and concerned. I wonder if her struggle had really begun back then? My mother had alzheimer and to watch this disease take over completely was frightening for her children. I often wondered what was she thinking watching us watch her. I wrote a song called "Did I Know You" Hope you can give it a listen. It speaks from the person who is suffering from this dreadful disease.

  6. As a caregiver I always treat my clients with dignity and respect. They are losing themselves right before our eyes, it's my job to make their journey as pain less as possible.

  7. Don’t try to finish a loved one’s sentences. Give her time to respond. If she can’t retrieve her thought after a long pause, gently prompt her with what you think she’s trying to say. When this started with B., I made the classic mistake of letting my frustrations get the better of me. B. would let a sentence trail off into space, and I’d jump in to finish it for her. As soon as I knew what she was trying to say, I’d go there first. I still get impatient—I’m only human—but I’ve gotten a lot better at letting B. take the time she needs. I try to be zen-like about it. I mean, after all, what’s the hurry?

    Very helpful! Thank you Dan. I make sure Judy has fun everyday even though her brain doesn't record what we did. It's good for her and good for me..

  8. What a beautifully written, honest, and thoughtful commentary about dealing with a loved one who has Alzheimer's disease. Thank you. It's a tough journey for us all.

  9. Dan,
    Thank you for this beautiful teaching tool. My Mother passed away two years ago this month. We experienced a lot of what you talk about. Your love and kindness throughout the article touched my heart deeply.

  10. Thank you.

  11. Dan we both were neighbors in Williamsburg Brooklyn and when I was growing Bedford was high class white. I appreciate your comments as sound I lost my wife in August with AD after seven years of being her caregiver and I kick myself now and cry many times when I recollect being angry. I wish she was still here so that I can lift her to my lips and kiss her and apologize. We were mmariied for 72 years and I have a hole in my heart This disease a plague worse than the Black Plague and we must all push the world of researchers for a solution. I miss Dr. Salk.

  12. Forgot to post the song about alzheimer in the last message "Did I Know You"

    Song told from the perspective of the person suffering from this disease.

  13. Beautifully said. I cared for my mother at home for 31/2 years, now she is in an Alzheimer's care unit. I treasure the time we had together & the fun and yes, I learned a LOT of patience! You cannot hurry a person with Alzheimer's, it only stresses them. May G-d bless you & your sweet wife as you make this difficult journey together. Never be afraid to ask for help or respite. One person cannot be a caregiver alone or your own health will suffer.

  14. Helpful comments in his remarks there.

    Yes, he is so right about not becoming impatient when the partner with the big "A" disease asks the caregiver the same question over and over. I am just trying to get used to it. Tom is only asking me over and over and over again….because he needs to know he tells me and he is NOT retaining my previous answers. However, one more hint (and I was told this by a helpful counselor) – DISTRACTION – just change the subject and the patient forgets what he was asking.

  15. Thank you for what I just read here. I’ve been doing readings on alzheimer’s lately because my mind, I feel may qualify. About twenty five years ago I was a passenger in a motorcycle wreck and left unconscious forty-six days. I never quite recovered and my biggest problem is repeating what I’m trying to recall. Because I’ve taught and worked with special ed. students and residents at the state school, and I do read and my husband and I have relatives who have had alzheimer’s, I want to continue building my ability with these beautiful people. I want their abilities to grow, too.

  16. Such good advice. My mom died in the Spring after almost 15 years since the first signs of the disease. I learned to do all the things you listed above. Hardest thing I ever did was being a caregiver, but she died with dignity and grace and I live on peacefully with no regrets. I live knowing that now she remembers me again, she knows now that I loved her and it was I who took care of her. She remembers that I am her daughter. I am sure of it.

  17. Very good points. As one who took care of his Mom with Alzheimer's that was diagnosed at 87, and his Dad with Vascular Dementia triggered by Strokes at 91, may I add a couple more.

    -Become adept at using Search Engines and their advanced Search features. I am a voracious reader, but I found to deal with that day's, week's or month's challenge to search for answers from reliable sources. After I would get them to bed I would be on the Internet searching most nights.

    -Surround yourself with a Network of Professionals. I had their Doctor, an Elder Law Attorney, a Certified Geriatric Care Manager and more to rely on for answers and input.

    -Make sure all the Legal Documents are up to date. Wills, Health Care Directives, Power of Attorney's, etc. As the Caregiver, I was also the Representative on the POA's. Make sure you know the assets and liabilities and have a plan. And another plan. And another Plan. The Diseases under the Dementia Umbrella can be expensive. When Mom passed, we lost her Pension and Social Security. That had to be made up in some manner. Hence all the plans.

    -Become aware of some common medical conditions that can create issues as one progressives with the disease/s that can change behavior. Sundowning, UTI's [Urinary Tract Infections], to name a couple.

    -Become proactive on any medications given to your loved ones. There are some very good sites where medications can be researched, entered for interactions and more.

    And lastly, as the Caregiver, take care of Yourself! Find a way to get Respite. There are Programs out there that can provide in home help from Professionals on a sliding fee scale.

    Again, a very good article with many good points.

  18. May GOD continue to Bless the both of you! As an African-American woman, it just warms my heart to see you in this role. The mainstream media would have us believe that all Black men are shiftless failures, that would run as soon as they were made aware of the diagnosis. But I trust and believe that you are simply one-of-many, thrust into the spotlight due to the nature of your careers. When I lived in the D.C. area, I enjoyed meals at the Union Station restaurant, and tried to make her book signings when I could. Know that you all are in my prayers…

  19. Thank you so much for sharing your story. My husband is exhibiting symptoms of Alzheimer's disease and I am terrified of what our future might be like. Reading your story gives me some insight into my own behavior, particularly the impatience and anger. Knowledge of the disease has developed so much from when my Grandmother had it back in the early 80's. And that is such a good thing. You've given me a lot to think about and I want to thank you again.

  20. I also have a wife with Younger Onset Alzheimer's (YOA) and I totally agree with everything Dan has stated. It is very tough to deal with what the disease is doing to your loved one, especially when you don't really know how far the disease has progressed. Are they able to understand your directions you verbally say? Are they able to understand the directions you write down? Are they doing something to get around not being able to say yes to either of those questions?

    Common sense and human dignity will most of the time get in the way as a caregiver to really find out what they are still capable of doing and what they have or are loosing. With YOA the caregiver is probably still working and the patient is usually still active, still driving, still shopping, still expected by others to be a normal person in their 40's or 50's and not someone who cannot lace their shoes, drive a mile from their house and not get lost or have a bible study and be able to answer the questions or even understand the bible verse references.

    Every day is a new day with new understanding and new discovery. The thing I do to address my wife's needs is to put off my hobbies, my career, and anything else that gets in the way of me being able to support her. After all, I will have plenty of "me" time, after the time I am no longer needed to care for my wife.

  21. Thank you, thank you Dan for stating what isn't at all obvious to the family caregiver/partner–become a student of the disease: what it is and isn't; the wide ranging behaviors and characteristics that manifest themselves; how to manage them. Please also pay attention to yourself. The care partner thinks they can 'handle it' all; you need to learn to 'share the care'.

  22. It is so heartbreaking to see my wonderful husband in that condition. But remarks like yours really help so much. Thank you so much. I feel supported which is something that is so lacking in our life. People including children and grands lose interest in visiting and so do friends. Luckily my darling is still as sweet as can be…and still wonderful…even in his forgetfulness. Bless you and B. I used to love to watch her on TV. Thank you for the book! I know it will help me greatly. Sincerely, Elaine

  23. I like to think, as my sister and I care, day to day for our mom, who raised us as a single parent, that sometime 'down the road' when mother has been called Home, we will look back and know we did the right thing by caring for her ourselves. Yes, of course, as all carers know…there are tough, heartbreaking days. And then just as suddenly, a joke will be told, mom will turn around and emerge from the fog and say something as funny, sharp and spot on as we ever remember from the past!. I write this all down in my journal and, these moments are golden, indeed. I also recall clearly the warm sound of B's voice on the radio saying "You know the one!!" and that is what comes to mind when I think of her. The challenge we all face as family members to care for a loved one with dementia: Alzheimers or any other, will shape and color our own lives. We go forward every day in faith, and draw comfort knowing there are many, many kinfolk out there. Bless B and her wonderful husband, and all of us, in whatever care circle we happen to be.

  24. Great insights Dan…

  25. Everything you say is “right on”! I would add something I heard at a caregivers support group- When the patient is upset, remember the acronym ARE. It stands for do NOT try to ARGUE, REASON, or EXPLAIN. Doing so just adds “fuel to the fire”, but try to re-direct or change the subject. Also many times discussing things you are going to do or need to have done can cause the patient to get upset. This I found very hard as we have been married over 50 years and always made decisions together. That is impossible now, so just try and do the right thing but don’t ask their approval or discuss it with them. Anne

  26. My husband has Alzheimer Disease ever since 2007, and I have, all this time need a caregiver, and I know it is a very hard, and I mean a really hard job. I now have decided to have two nursing men, one during the day and another for the night. I really love them because they do the job very professionally in my house. Aristides, my husband, has being in a terrible process for us and those who love and care for him.

  27. What a lovely and so right on post . . I was a caregiver for my grandfather when he had dementia/early Alzheimers Disease and it was truly the hardest thing I ever did. I also worked as a CNA at a nursing home and had absolutely wonderful experiences there. I had one patient that was an 80+ year old retired boxer — big, strong, combative. He would or could not walk, talk or anything. I worked with him, talked to him and finally got him to the point where he would stand up and walk, and would say to me I love you — no better feeling in the world!

  28. I am an early onset patient and live alone. I feel wonderful so far but I’m scared. I pray for us all

  29. I think story should be read by all that either knows someone with Alzheimer's or is a caregiver. I find that small little tips like including the Alzheimer patient in the decision making is a very good point. We think they are completely gone but sometimes they come back in a moment. How sad to loose that moment. I saw Dan and B on Dr. Oz and I thought Dan was completely caring to B. She still knows he is there for her no matter what. I think that is comforting for her. Ever little tip can be beneficial. Thank you.

  30. Beautifully written!

  31. This was an answer to my prayers. I’m going to read these words everyday. My husband was diagnosed with early onset a year ago, at age 58. I am still feeling blindsided to this day by this insidious monster disease. I want to thank you for the most valuable advice you could EVER give to us caregivers. Stay strong in your and B.’s journey

  32. Dear Mr. Gasby

    I feel for you. I too am a caregiver to my mother who has Alzheimer’s and leukemia. It is a very hard and heartbreaking thing to do. My mom gets very aggressive at times and the person I know as momma no longer exists.

    Thank you for all you do to promote Alzheimer’s awareness.

    God Bless



  33. I needed this article, thank you. I am a only child, father diagnosed recently. I’m getting better, and stronger. This article was confirmation that I am headed in the right direction. Thank you.

  34. Mr. Gasby, B is so lucky that you are treating her with the respect and dignity she deserves. I too am caring for my husband who was diagnosed with AD in 2013 and it has a challenging tiring journey as I navigate my way through on where and how to seek emotional and monetary support from different resources. Thank you for sharing your experiences on how to make them feel more comfortable and offer them the best quality of life for their remaining years. I am glad you stressed the importance of reading the literature for it has been a tremendous help for me in understanding the disease and therefore being a more compassionate care giver and wife to Jim. I also believe that daily prayers and keeping one's Faith makes us stronger and hopeful. May the Lord Bless your beloved wife B and yourself. I would looking forward to read your book. Can you please send me a signed complimentary copy of Before I Forget?

  35. This is some of the best info I have ever read on the dementia subject. I can honestly say that I am doing pretty much what Dan is recommending. Maybe I should say I am doing better-not completely there yet and not too sure I will ever get there completely. Peggy in our 13 years together never yelled at me even once and now it is a constant condition. This is my most trying challenge. This morning it was her yelling at me for an hour over her prescription dosage. I finally called her doctor and he convinced her I was correct. Believe it or not, I did not raise my voice even once.

  36. This is so spot on! Thank you…;) I am sorry to say I have been guilty of all of the above, but am learning as I go, and theses tips are priceless ! Especially, the last one. 😉

  37. Great story. I was especially interested in seeing a “male” care giver in the spotlight. I take care of my Mom, who is in the early stages of dementia, and sometimes still get surprised looks when people learn “the son” not the daughter is the one taking care of Mom.

  38. Thank you for this. You and B. are a beautiful couple and incredibly kind to share your knowledge. Emergency Room and Hospital healthcare providers need training on interacting with Alzheimer’s and dementia patients and remembering these patients are people. I am also concerned about the off label prescribing of atypical anti-psychotics in these patients.

  39. I am just about to embark on a new endeavor to be a caregiver support group facilitator. I am going to print out this blog and put your book on my resource hand-out. I'm sure both of your writings will help others in so many ways. Thank you.

  40. What a moving post, Dan. I am the sole carer of my husband who was also diagnosed with young-onset Alzheimer's a few years ago. Your tips are excellent – I particularly like the 'yes/no only' tip. Shepherding my darling through this disease is very lonely at times, and hearing the experiences of others in a similar position is so helpful – so thank you for sharing. I wish you and your beautiful wife everything wonderful. x

  41. My husband was diagnosed early last year, this has completely change our relationship, he doesn’t consider me his wife that was the most heart broken to me it’s like someone stabbed me in the chest, I get will frustrated , he forgets where he puts his wallett, jewerly, money thinks I am stealing from him, it’s only me and my son he is 27yrs old and we get accused of stealing , hiding his things when it is he that misplaces…it seemss you sre handling this well, I am so lonely I just want my husband back. Your article

    Was so touching to me, I which we could have a relationship like you & B.


    Ruth Kindred

  42. This disease devastated families as well as the patienta. As a nurse in this field I’ve watched how difficult this is for all parties and I applaud this book. The more light that is shed on this disease the more funding it may get, which will benefit all the people with this terrible disease.

  43. I am the caregiver for my husband who has Alzheimer’s. I will definitely buy your book.

  44. Thanks for sharing your experience. Lion’s Mane mushroom helped a great deal when I experienced cognitive decline. It is believed to stimulate nerve growth factor production.

  45. This is beautiful. Wish I'd seen this back in 2009 when my mother was diagnosed.

  46. As a caregiver to my wonderful, intelligent wife and partner for over 47 years and after three years of dealing with the fact that I cannot fix or change the diagnosis, I have finally gotten over the fact that life is not fair. We are currently in a trial study for a cure and on the only approved medicines available. Still the downward slide continues. I have found out though, that as she is going thru the 'long goodbye', that we are growing much closer. My being in a caregiver role allows me to do things for her and with her that were not even on the horizon before. We are fortunate to live in a Continuing Care Retirement Community (CCRC) where the emphasis is remaining in your cottage, with whatever support is needed, until you need the continuing care in the health center.

    We are also very lucky to have met other couples here that are going down the same path and we are able to support and encourage each other. We have formed a group which meets once a month with our partners meeting with an activities coordinator for fun activities while the caregivers meet in a separate room. This gives the caretakers somewhere to openly discuss issues and concerns that we have. I consider myself very blessed that I was able to know and love my wife thru these past years and so far we have been able to work thru the daily, weekly and monthly changes in her ability to get through each day. We know that the future holds some very tough times so we live in the moment and love and hug each other throughout the day.

  47. Great post, Dan. You are obviously a very self-aware and thoughtful partner to B. Good thing, because she's an amazing woman. I hope you're being good to yourself.

    One more thing I'd add — even when the ability to communicate seems completely gone, it's important to talk to your mom, brother, wife. I actually love the nonsensical conversations I have with my mom. And it's maybe even more important to touch. Just holding my mom's hand and stroking it for 20 minutes is calming to her and amazingly meaningful to me. And giving her a big hug when I leave is restorative to me and it touches a part of my mom that's still there.

  48. Beautifully said. Only someone who has loved someone with Alzheimer’s knows how frustrating it is and tries hard to not hurt the person with impatience , but it is easier said than done. Wonderful advise.

    Thank you.

  49. Thank you for sharing your story. I lost my brilliant 79 year old mother to Alzheimer’s in 2009. It was hard to see her regression over the 10 years of her illness, and I felt guilt about what I didn’t do correctly… And yet I remembered that I did the best I could. Our family loved her very much, and we dream of her daily. Music brought her back many times. My only advice is to play a lot of music, cry, acknowledge, and get support. Know that you are doing the best you can. It is so damn scary.

  50. I couldn't agree more. I watch as my mother cares for my father, her husband of 40 years with unwavering strength, courage and love _ he was diagnosed with dementia almost 2 years ago but Alzheimer's has quickly stolen his mind. The oldest of 3 we all try to help the best we know how but for her it's 24 hours a day, 7 days a week_ non stop…. I often wonder if it may kill her first. Praying for you and yours.

  51. Hi Dan, I appreciate all of your good advice….my husband who was the nicest sweetest man, a policemen, a city code enforcer and a politician also got early onset Alzheimer’s. It’s also a learning progress for me. I have never dealt with someone who had this so I had no idea what was coming. But u quickly learn what works and what doesn’t. And at times it changes in a minute and what used to work doesn’t any more. I have learned It’s all about patience, and I don’t always have it but I try. We’re only human and at times I get short but try to remember it’s not personal against me. He can’t help it, he’s not the same man.

    I took him this week on a last vacation we went to Hawaii. I am exhausted. It was so much work trying to keep him straight on what we were doing or how it was going to go, but he enjoyed it and it was worth it to see him happy. That’s the goal now, his happiness! If he wants ice cream or what ever he wants he gets it, it’s all about making sure he’s happy. That’s our family goal. I try to keep the kids in the loop all the time with the decisions and that’s what works for us.

    We wish u the best of your luck also in your family’s journey with this. Don’t be hard on yourself if it doesn’t go well on a certain day. We all feel guilty. We just try to do it better next time….. Thank you for letting me vent, it’s nice to talk to someone who is going through the same thing. Feel free to write anytime if we can help also. Hang in there Paula Hunt

  52. Enjoyed reading the "Note to Caregivers" and the suggestions given are invaluable. It brought back memories of my wife's early stage of Alzheimer's. She was diagnosed with the disease at the age of 59, thirteen years ago and is now in the advance stage. Being a caregiver as stated is a full time difficult job, but the LOVE for your spouse allows you to adjust to any and all situations with pleasure, being thankful that you can do the job.

  53. The worst part of this disease is knowing that it cannot be cured. My Mom was diagnosed in 2010 and passed in 2014. I'm still grieving. I'll keep you in my prayers.

  54. Only Teepa Snow has advice on this level of caregiving. This is so well done. By my little, very little envoy ment with this life changing care of people, I am truly amazed that anyone can do it. To care for one in the early stages is one thing, but to be with and watch a person decline, sometimes with the one you love most is truly a gift from above. I have been seen by a Nero sergion for the last several months, taken many blood test, mri, eeg and in a couple weeks I go get a neuropsychology test. Not knowing is the hardest thing I have ever gone through, but to read a piece like this gives me great hope that even if I am told I am positive, I know I will have the best of care from those who will take on that job of caregiver to me. Thank you for that!!!!!!

  55. What wonderful examples Mr. Gasby gave us such as making sure that you don't speak for or interrupt your loved one while they are taking time to try to say something, or to ask questions that only require a yes or no answer. Yes being a caregiver is stressful but in your heart you know you are doing the right thing by helping the one you love. I hope the caregiver makes time to spend for themself to re-energize and for their own health and peace of mind.

  56. I loved your story.

    My husband of 35 years has Alzheimer’s.

    He was a brilliant lawyer. Also my best friend, my soul mate.

    I thought I could always be his caregiver .

    But people who are not trained to be caregivers need help.

    And a high percentage of care givers

    die before the person they are caring for.

    I found after 3 years of caring for my husband that I could no longer to it.

    With advice from his doctors and family I finally put my husband in a Memory facility .

    It was the hardest thing I have ever done.

    I thought he would hate me .

    Surprisingly he wasn’t mad or upset. He actually loves his new home.

    He is truly happy ! He loves the caregivers,

    The other patients, and is going great .

    Alzheimer’s is the most insidious disease .

    The medical industry isn’t doing enough to find a cure.,

    and they definitely need to !

    People need to start reading hell about it like they did about AIDS.

    We need to rise above and start fighting for our loved ones.

    For a cure… For the fight of high costs for their care.

    Thanks for taking the time to read this .

    Beverly Latham

  57. This is awesome advice. I was a caregiver for my mother. It was the hardest most rewarding experience of my life. You and all caregivers will continuously be in my prayers as you take your journey through this chapter in life.

  58. I went through this with my dad seven years ago . . He was the best father in the world But the last two years he declined so much that I brought him to live with me it was the hardest ting I ever done, But there is never a day goes by That I am grateful that I was given that opportunity to nurse him to the end , This made me cry will buy the book Thank you for putting this on here

  59. Bought tears to my eyes….Having been a caretaker for my Mom for 5 years, who is now living with our Lord, I longed wished to have exactly this! You are an amazing human-being and the chosen one to be by her side! Blessings always.

  60. Thank you Dan. I'm not one to say things lie you do. But I do think them. And try to remind myself to be patient. We still argue. Just not as often and about things that we can eventually laugh about. Of course I have my "Oh Crap" moments. I just try to remember to take a step back and breath. Thanks and I'll put your book on my shopping list.

  61. My dear Dan and beautiful B thanks for sharing your most intimate feelings, thoughts and honesty. My mom, at 90 and 1.5 years into Dementia/Alzheimer's asks very little, however, requires much. Thanks for your words.

  62. Morning thanks for your information as i have a mother who has dementia, at first it was very hard on me to understand , now i am reading every book possible, as information is wealth

  63. Thank you Dan. I am caring for my mother as she goes on her journey with Alzheimer's and I really appreciate your advice. I think you are so right about never losing sight of their dignity. My mother was a high school maths teacher for 40 years and while she can no longer add simple numbers, I will never forget how incredible she was and always will be. She is not the disease. She is my beautiful amazing mother who is suffering with the disease. She deserves dignity and respect.

  64. I understand!

    B is a beautiful woman and I am so sorry for you both. I just lost the love of my life to that damn Dementia. I have not read your book as yet but I plan to as soon as I am able. My humble contribution to share with others is a poetry book I wrote; Decent into Dementia, narrating some of the heartbreaking challenges that we go through. May God keep you both strong in these unspeakably horrible days and cherish each good moment while you can. Karen J Chism

  65. Just want to comment on how Dan is so right about his handling of this disease. My parents both had Alzheimer’s in their later years and it was hard to see them change. Hang in there and enjoy the happy moments with B.

    I recently moved from NJ to NC and I was doing the walk this Saturday 11/7/15 in Wilmington in memory of my parents, but now I am also doing it to honor B.

  66. Your thoughts are appreciated. I am my Mother’s caregiver. I have learned so much about myself in this process. Compassion and patience have been my goal and forgiveness my chocolate cake. What a journey we experiencing. The support from my sister’s and brother have crucial and Hospice has been life changing. They helped Mom live in a gracious way and Previsan has her talking again. We get yes and no now and lot’s of gibberish but we’ll take it. Every now and again she will call your name, A nd that puts a smile on my face. I Love to hear hay baby, how you doin? I know she doesn’t remember my name, but baby sounds great.

  67. I have walked the path in your shoes. She passed at 57 and was freed to walk with the angels. The roll of caregiver is a part of my life I would never change and wish all the lessons learned could have been taught not learned in the trenches. It has changed my life in many ways but being there through every day of the walk is the highlight of my life. It is the pinnacle of who you can become when love really calls.

  68. Thank you so much Dan for writing this article! My Mom was diagnosed with Alzheimers 6 years ago. I am now her fulltime caregiver and all of your comments made are so true. We all make these mistakes and I now realize the need for them to always be involved in these conversations as well as keeping their dignity as they and we deal with their disease!

  69. Thank you, Dan, and beautiful B.
    You final comment, …"remain, somewhere inside, the people we knew"—resonates totally with me, and my experience as a "secondary caregiver" and granddaughter.
    All the best to you two—there is still good to be had. You are giving it!

  70. Thank you Thank you Thank you!

  71. You are bang on Mr. Gasby. The last two points resonated with me in particular. I learned so much caring for Mum. I would do it so differently if I had to do all over again. Don't get me wrong, we did activities together, but when communication and interaction decreased, I would read to her more, look over photos more, and towards the end, hold her, hug her and touch her so much more.

  72. This was a lovely post and really gut-wrenchingly fantastic advise. I just watched "Still Alice" and although I work in the field of neuroplasticity, with patients who have no diagnosis of dementia or alzheimer's, many are scared they may be sitting on the edge. Awareness is key. Thank you for sharing.

  73. Thanks for sharing. I understand where u r coming from I my hubby is early onset for 5 year s now. It’s from hard, the hardest thing u can think of. Music keeps us strong.

  74. Thanks for sharing. I remember vividly my father's illness and how my mother helped him ,with dignity and respect and most of all love.

  75. Thank you for sharing your story my story was the same my husband had it for years before it took him down and he lost his battle it's a different story every day when they have that disease may God bless everyone of us that are caregivers it was for better or worse and I did that 33 years is a long time to love.

  76. Very good article! I took care of both parents with Alzheimer’s. It affects you too. And yes, they are still in there!

  77. I am the caregiver for my husband with early onset of FTD. I know all the words you have just spoken to be absolutely true! Our loved ones deserve to be treated with dignity throughout the next journey of their life. I find myself not only being his caregiver but his advocate to raise awareness of these diseases and his advocate to educate our society how important it is to treat everyone with dignity and respect. May God continue to give us the strength to move forward!
    Shirley from Girard, Ohio

  78. I am amazed, moved, motivated and grateful to see this excellent writing about what seems to be on so many people's minds these days. Thank you.

  79. Thank you. We all hope that we don't have to deal with this but by adding to our information it is good to know that other's are dealing with this and that one can get through it.

  80. One of the most helpful thing I have read about when a spouse become the care giver. One other thing that the care giver must do is to take some personal time. I go on long walks in the morning while my wife is still in bed. When my son is home I might take a couple of hours to just go shopping for small things like books for the grand kid. Spend more time looking and walking than shopping. Even though it take me hour to get her ready for church I take the time to do it because this is something that she want to do every Sunday. I also find that I find praying and yoga very help with dealing with my own stress. I also found that I have to take all telephone calls and intercept all mail address to her to protect her and my household from scams.

  81. True words. And something else I learned, treat the person with lots of love…they may not remember what you say, but they'll remember how you made them feel. This is a horrible disease and I pray for strength for everyone dealing with it.

  82. Powerfully written with love and respect. How truly inspirational and informative. They understand more than we think they do, even up to the end. My Mother had Alzheimer's and we took care of her in our home with weekly visits from Hospice. We had her for 8 years and of course said goodbye to her twice. But before the second goodbye in our home, we learned so much from her. We have a beautiful sheep farm with a back deck on the house that my husband built just for my Mother to enjoy our garden railroad, our small Koi pond with a waterfall. Most people that visit our home and gardens try to describe it giving us many compliments and asking if they can they stay longer. We never knew if my Mother recognized the beauty because she rarely spoke., One perfect Fall lunchtime on the deck, I pointed out to her the wind chimes singing, the splash of the waterfall, the many hummingbirds flitting about, the little lambs grazing right next to the deck and the falling leaves.. I did not expect a reply. In a little while she shocked me by asking if we could take it inside. I thought she meant lunch and so I said yes we could take lunch inside. "No" she said firmly. "What do you want to take inside?" She looked at me with those fading grey eyes, and said after a long pause "The Magic."

  83. Caring for my Mother through her Dementia taught me PATIENCE…and for that, I am grateful.

  84. Yes, thank you so much for this information. I wish I had known most of this in 2002, when my mother was first diagnosed. Although my two older sister and I did our best, we all did not have the tools, equipment, mental, physical, emotioanal , and education to deal with in the best way.
    What I did learn thru the experience and what I have come to learn over the years with new treatments, and news media shedding more of a light on this disease, I am well equipped to take on any other family members who may come down with this disabling disease as it runs in the family genes, I myself may have to come to terms with it.
    I am sure your book, Before I forget, will be helpful to many, and I will try to purchase it in the near future.
    I am wishing, praying, and sending love and positive energy, to you and your lovely wife. I watched her show for years, and always thought of her as a beautiful spirit. I am so glad she has you to see her thru this difficult time ,
    May God Bless and Keep You Both .

  85. Your story MEANS MORETHAN I CAN SAY, So much applies to many of us caring for loved ones, in some cases parents we uae to "know" and we were sure ths would never happeh to usl
    Thank you for sharing such persnal thoughts and feelingsl You are special man – even though y9ur world has changedl

  86. Thank you for this wonderful post. My husband was diagnosed by his long time friend and primary doctor 5 1/2 years ago. I started going to the Alzheimers Association and joined the support group. I also read many books to try to find out what to expect. I also watched some videos about it. I found it incredibly fascinating. My husband has continued to walk six miles nearly every day without getting lost. He walks the same 1 mile loop 6 times. We also have kept very active at church putting in many volunteer hours weekly. He loves singing with a men's group and the church choir. We also travel different places and love movies and concerts. All of these activities have helped keep him from being depressed and many people don't even realize that he has this horrible disease. He has a great sense of humor that helps us laugh through many interesting times. One comment I'd like to make. We just recently went to a Neurologist to see if there was anything that we weren't doing that would be helpful. Other then suggesting going on the medications again (we took him off last year as we couldn't see the benefit) and using Coconut Oil, there really wasn't any good suggestions. I have gotten more help and great information from the ALZ Assn and the wonderful caregivers in the support group. If you haven't gone to them, please do. It's been a tremendous help. I feel more confident that I'll be able to continue to care for him as things progress. All that you said was true and very helpful. God bless all that are dealing with this disease.

  87. Thank You Dan! I'm caring for my beautiful 84 & 3/4 year young mother. I'm the youngest of 4 and feel like that's why I was born a "Love Child" because GOD knew I would give up everything to care for my Mother. The boys accuse for NOT HELPING is "I'm a man. I can't do that!" And my sister the RN "NEVER" has the time and tells me what I need to do all the time! October 2014 I finally accepted her having Progressive Dementia and just learned to cut up with her, laugh, joke, shake my behind in her face sometimes to make her do or say something to correct me and THAT MAKES GOING THROUGH THIS FUN & NOT SO DEPRESSING!! People tell me to put her in a nursing home and I promised Ma years before she had this that I WOULD NEVER PUT HER IN A HOME because I feel that's throwing your parent(s) away. I love her too much to do that. It has worn my body down physically and mentally, but she will stay in her home around her pictures, clothes, etc. But I must take more time to care for myself in order to continue to care for this Beautiful Soul! GOD BLESS US ALL THAT CARE FOR &/OR HAVE THIS ILLNESS! Mama cared for Grandma at home and her brothers didn't help, and my Great Grandma had it too! I pray I don't get it because I never had the opportunity to have children, so I often questioned what would happen to me? Althea Loving her Mama Hattie in Upstate SC. 11-5-2015#FINDACURENOW

  88. Thank you for sharing and trying to show the positives in what can often be a very negative scenario.

    As my role of a Dementia Nurse Specialist I often try and explain to people that whilst there will be many days that feel almost too much too bare there will still be times when you can cherish those special moments you have together and focus on the things that their loved one can still do rather than on what they now find difficult. The memories are still inside us all its just about trying to find the key that unlocks them…..

    Kindest regards to you both

  89. I went through these same emotions and frustrations caring for my husband. And there was the guilt I initially felt when it became necessary to place him in a memory care facility. He was safe and cared for and respected his individual needs, and I had to learn that I couldn't do it all. A very touching and true account of caregiving for a loved one with dementia.

  90. My son and I have just placed my husband in a unique Memory Care facility. For the most part, he is getting what we couldn't give him, which was not really understanding how to handle a person with dementia/Alzheimer's. We tried our best as did our aides but it wasn't enough. He was agitated and would wander and we knew he needed more professional care. It breaks my heart because there is not much left of him that I remember when he was my wonderful husband. Due to my son taking extra care of him physically and health wise, my husband is in great shape physically. For that, I am so thankful.

  91. I understand the idea of not getting frustrated with the patient, but how do you do that. Maybe that will come in time, my husband was recently diagnosed, I'm so sad and angry I don't know what to do.


  93. Thank you Dan. I am sole care giver for my mom for 3 yrs now. Some of your comments brought tears to my eyes.

  94. Thank you for taking the time to write a book! I will get it soon.
    . We have had my mom Hazel in our home for 6 years
    . I am so very proud of my son's, now 18 yrs and 21, and especially my Husband for being a positive and supporting part of this journey . They have gone above and beyond with their time and patience, giving up time and activities without complaint. I could not have done this without them
    Moms humor is still there, we laugh just as we used to. She is still the beautiful woman she has always been
    . If you are in this journey, please go to your Alz support group meetings! You will learn so many ways to cope, and it is just so helpful to know these people, that know exactly how you feel, and what your family is dealing with. I am definitely getting more tired as mom is in her later stages, and it's harder physicaly.
    . One of the best books ever, to help you and your loved one, is A Dignified Life….By Virginia Bell & David Troxel. As Dan said, read all you can to learn,it will help you! You also may need to educate your Dr. ,they don't see your loved one at home.
    educate yourself and your family. Thank you again Dan for writing

  95. Dan, excellent information regarding being a caregiver. I too am caring for my wife of 46 years. It is indeed a challenge; yet, I have found that God's grace is sufficient. I applaud the points you gave for indeed they are timely. I was led to release a book my self regarding the care giving experience entitled: "Count it all Joy." I find it joy to serve my wife during this season and will give her the best care possible. I will be speaking at a caregiver's conference on Thursday Nov. 12th; sharing my experience as a caregiver and counting it all joy. Thanks for sharing your experience.

  96. Enjoyed your blog. We as caregivers do go through everything you mentioned. We do all have so much to learn.
    As for my situation I was use to being taken care of by my husband for over twenty five years. Slap in the face came when I found out what a mess our finances had gotten into, finding he had been slipping for a couple of years without me picking up on it. I blamed myself and I would become angry with him for becoming ill and hiding it from me.
    Yes to educate yourself changes was is happening and helps.
    I still can't get use to losing a part of him by the day. The fear of if I will be strong enough to care for him till the end. That is what he ask for. To stay home with me to the end.
    Thank you for your thoughts and may God protect your wife and you.

  97. My husband has Early Onset Dementia for 3 years now. He can still drive, load the dishwasher, work out at the athletic club, go to therapy on his own, enjoy company and socializing with small groups, and occasionally grocery shop, although that's recently overwhelming to him. Our daughter lives nearby, and can help. But my suggestions are 1. take care of yourself! I meditate and practice yoga every morning, and so does he. I have a regular walk every week with girlfriends. I went on an out of town trip for 5 days, and hired a caregiver and cook for 5 hours each day. He resisted it before I left, but then thanked me during and after the trip. 2. Check out MuscMendsMinds.org. I saw this news about this group in February, went to one of their rehearsals of their band, the 5th Dementia, and asked for help from my local Rotary Club. Rotary provided insurance, non-profit status, and all expenses paid. So I started our own group in my community, and now we have 25 people every Tuesday who sing and hit drums together, with a care giver support group of 20 min. of our hour session. Music is Magic for the brain!!

    Sending strength and wishes for self care: love your partner fully, but also YOURSELF!

  98. I am going to find that book on my Kindle. It sounds so good.
    I can tell you something NOT to do. Last May I had a call from an old friend that I had gone together with through 12 years of school with. She told me that my class (what was left of them) were planning our 70th high school class reunion. We had graduated in 1945. She offered to pick me up and take me to the reunion. We would be staying with another class friend.
    I really wanted to go. The reunion would be 200 miles from my home. I take care of my 90 year old husband, who I dearly love. It is sort of changeling sometimes however. I decided to not tell him before hand what I planed on doing. My friend and her son, who was driving us, stayed with us the night before we were to leave. I got up early and just went with my friends. The reunion was nice but I worried about him all the time I was gone. Two days. My two daughters and one of my sons were going to take care of him while I was gone. He was OK until it came time to go to bed. Then he got in his head that I had run off with another man to a party. I can guarantee that I would NEVER do that. This thought stuck in his mind. I spent two weeks of terrible times. He wouldn't believe me or anyone that I had not done that. I finally had to get some pills that would simmer him down. It was awful. Now he's back to his sweet self but I'll never not tell him what I'm doing again.

  99. God bless you Dan. My mother was diagnose with Alzheimer's at 52 she passed away last year at 72. I took care of my mom for 20 years. It wasn't easy and it was very challenging. I gave up everything for my mother. She was my life, my world, my universe. I know she's in a better place but I still miss her so much. Make sure you take care of yourself as well. Take care and God bless you both.

  100. It has been recommended I join a support group, however being a nurse for almost thirty years I feel there is nothing I will gain from this. I also know the purpose is to share and talk to those going through the same experience I am faced with. I am only 52 years old and my husband is 61, he was diagnosed a year ago with early-onset alzheimers. I knew he was having trouble about 4 years ago when he was having difficulty remembering things. He was a successful business owner of a construction company. My daughter and I were overseeing all operations but it became very difficult to manage my husband in business affairs, the decision to retire was his. I should add here that I am also the sole caregiver for my mother who has alzheimers. To say the past year has been daunting would be an understatement. I have moved my mom into an assisted living facility where she has 24 hour care, thank goodness. The challenges we face as caregivers teaches us how to be patient as we find ourselves fiercely protective of our loved ones. We are their shields, we are their protectors, we will always be their guardian angels to watch over them and guide them as they progress into a world we do not know. I describe my days sometimes as a comparison to the movie Groundhogs day, where both my mother and my husband tend to focus on the same thought over and over days at a time before they move to another thought or obsession. I tell you that I do not think a group session would help me but here I am writing to you. Sometimes I do feel alone, only those who have lived through this can truly understand the emotional toll this can take on us as the caregivers. I am grateful I could share this even though I do not know you, I "know you" because we have a shared, in the undying love and care of someone whose heart is a part of our own. Thank you

  101. I think caregiving is a tremendous challenge and support the suggestions and sentiment Dan is expousing. I also think it important to explore alternative treatment methods that can provide both symptom relief for the person with dementia and stress reduction for caregivers. We need to seriously explore and study the non-drug, noninvasive treatment methods that are available now. Marvin Berman PhD

  102. This is all so new to me. I enjoyed reading the comments. I will continue to try to educate myself about Alzheimer's. I need support and help and have just started on my journey to be the best care giver to my husband. He was diagnosed 2 years ago but it is starting to become real.

  103. thanks for your advice. My wife is a very healthy grandmother age 66 who still kicks the soccer ball around with
    her grandsons but needs help dressing herself, finding her way around and writing her name. I have found that
    apathy is the tool that AD uses to control the patient. Our family has done a good job of separating the disease
    from the person.
    Gennie's brain scans did not show any damage. So we went outside our healthcare network and had her
    genetically tested which returned a reading that she has the APOE4 mutation which confirms that her dementia
    is caused by AD.
    Good luck,
    David B. Williams

  104. I so enjoyed reading your post. The last paragraph brought tears, thinking of my dear husband and how he knows yet how dysfunctional he is becoming in just a short time. I have lost my temper but not with him. With the disease, the frustration, the amount of time it takes to care for him which causes me less time to do the things I want and need to do. After my outburst, I hold him tight and tell him I am not upset with him but with our situation. I am in this with him and I love him dearly. I've only been in this situation for about 6 months with him not being able to walk by himself, but he is continent, knows our family, has the sweetest disposition, and tells me a hundred times a day, "You're beautiful and I love you!" What more can a wife want?

  105. What a great help to me. Thank you Ben for sharing this. It really helps me. Being a caregiver or patient can be very lonely. You really miss the one you love.

  106. Thanks for this valuable insight and information. My siblings and I are trying to navigate this territory with our father. We are all constantly reading and trying to get a better insight on how best to take care of him.

  107. My husband who is 80 I believe has been suffering from dementia for about 5 years. It has been a slow progression and the initial symptoms I did not recognize. He refuses any medical treatment including medication. He is obsessed with getting his car back. We do not allow him to drive anymore which is tough for this very independent person. I still work and am torn as to the level of care he will need. He refuses to have anyone strange in the house. When I refuse to take him to the care dealership so he can buy a car, he begins cursing me out and saying all manner of hateful things. I really want to care for him at home as long as possible, but his refusal for help is the most problematic. Please give me some suggestions.

  108. thank you Dan for sharing your experience

  109. I moved in with my parents, because I am concerned about their abilities to lead a normal life. I am 60 yrs old. My mom and dad are both pushing 90. Both with dementia at least, possibly alzheimers. However, they both still see me as a child, wont allow any help from me, and accuse me of stealing things. HELP!!! We live waaaaaaay out in the country. I feel isolated in some kind of hell.

  110. Dear Mr.Gasby
    Thankyou for message and sharing about your BEAUTIFUL WIFE FRIEND B Smith.I have always enjoyed seeing her and her beauty following all her sharing all of her ideas in dressing,cooking and the travels you shared.I am also a caregiver,first for my father and now for my beautiful mother.The difference I find is that when my dad was first diagnosed there was no medication for the diease like there is now.Just like your beautiful wife my mother was also very talented in decorating cooking and a excellent seamstress she made all of my clothes and for family and friends. On Sundays you would find her at church if not in the kitchen or on the floor as the President of the usher board.I am a single caregiver who does everything,the only assistance I get is 4hours 3 days per week and it gets hard and I find myself having to step back and regrouping,I also put a program in place to assist us both because its about her.I have not read your book yet but I plan on purchasing it next week,looking foward into reading it and getting some of your pearls in areas that will help me.Once again Thankyou.Many Blessing to you and the BEAUTIFUL B.SMITH

    Sincerly yours
    Patricia Simmons

  111. I loved the book. A must read for caregivers.

  112. I just want to say I've always greatly admired Ms. B. Smith … she's like a black Martha Stewart. I remember when I heard about her diagnosis, I was surprised because if anyone seemed to keep her mind active and her body healthy, it's B. Smith. That said, I do understand that this terrible disease can potentially happen to anyone. My father has it … he walked 5 miles a day for 50 yrs, and was an avid gardener, volunteered at the Salvation Army, and taught and preached at his church. He was always active, mentally, spiritually, and physically. Things have changed now, but he's still my Dad and we as a family are doing our best to care for him… sometimes with laughter, sometimes through tears. I like the the part about asking simple yes/no questions. I do this with Dad and right now it works. God help us all.

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