Dec 222016
 

The holidays have long been known as the season of joy, but how do you truly define joy? As someone living with Alzheimer’s disease and approaching my first Christmas since receiving the diagnosis, I’m beginning to define joy differently than I have in previous years.

While I previously found joy during the holidays in festive decorations, music, meals and parties, I’ve come to realize these are fleeting. This year, spending time with my family, making new memories and remembering past holidays are the activities that bring me the most contentment.

In fact, joy has become less of a feeling and more of an action for me. I actively rejoice for the blessings I have in my family and friends. I show joy through acts of love and have let go of the small stresses that would’ve stolen my happiness during previous holidays.

Some will read this and wonder how I could possibly rejoice given the circumstances of my disease and its prognosis. Alzheimer’s is a fatal disease that has no cure. It worsens over time – slowly causing problems with memory, thinking and behavior, and it will eventually rob me of my ability to respond to the world around me. The disease will ultimately take my life, typically in eight years from now.

It’s not easy to cope with the reality of Alzheimer’s, but my faith has helped me rejoice this holiday season. Alzheimer’s is part of me now, but it does not define who I am. Alzheimer’s may have changed my brain’s biology, my personality and my expressions, but I tell my family that the essence of who I am in my heart remains the same.

Further, Alzheimer’s disease has added greater purpose to my life. For example, I put my joy into action by joining an advisory group of people in the early stages of Alzheimer’s through the Alzheimer’s Association. Working with this group to raise awareness, reduce stigma and help others living with this disease has provided a great sense of resolve and happiness in every season since my diagnosis.

If you or a loved one has been diagnosed with Alzheimer’s, it’s important to never deny the disease. While it can be painful to accept, it’s important to know that you are not alone – help and support services are available through the Alzheimer’s Association.

Until there is a cure, I am determined to continue living my life with Alzheimer’s to the fullest and helping others experience joy as we navigate the challenges and changes brought about by this disease. As I look toward my first Christmas with Alzheimer’s, relishing in the love of my family, my faith and kindness from others are the pillars of my season of joy.

May you, too, find joy in every circumstance.

About the Author: Jeff Borghoff is raising awareness of Alzheimer’s disease as a member of the Alzheimer’s Association 2016 National Early-Stage Advisory Group (ESAG).


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  121 Responses to “Finding Joy During My First Christmas with Alzheimer’s”

  1. Jeff said it all perfectly. I couldn’t add a thing!

  2. Wishing many blessings to you, Jeff, and your family this holiday season and in the new year ahead.

    • Thank you Kathleen. Merry Christmas. ~ Jeff

    • My wife of 64 wonderful years is in the final stages of Alzheimer’s and glad you enjoyed this Christmas and hope you enjoy many more before this terrible disease erases more of your memory. The Christmas at our house consisted of watching her laying in bed and not having any reaction or recollection of what Christmas means or what the season is about. I am sure you have read what the future brings so I hope I am not alarming you but my wife is now bedridden, beginning to have trouble swallowing solid foods so now I prepare everything in liquid form and still

      have problems getting her to swallow much of it. I can see the end coming but at least I will be able to recall these last few years with her and helping her through this along with the many happy years of love and happiness before this terrible disease separated us without any apologies for doing so. I am fortunate, so far, of being able to remember ALL the 64 years of our life together. She is leaving me, three wonderful children, four grand children and four great grand children without remembering much if anything of it at all. So sad and wasteful of a beautiful, kind and loving wife and mother. My prayers are that a cure will be discovered soon in time to spare millions of others will be spared this terrible way to end their lives.

  3. Jeff,
    Thank you for sharing your story. You shared with us and your family exactly what my 2 sisters and I found to be true through our Mom's experience with Alzheimer. "Alzheimer’s may have changed my brain’s biology, my personality and my expressions, but I tell my family that the essence of who I am in my heart remains the same." Mom may not have known our names and thought I was the supervisor of the ALF while living with me; she knew we loved her and we knew she loved us. Her living in the moment, not worrying about the future or ruminating about the past helped us see her living in the present. It gave us purpose to give Mom the joy she deserved. There was no need to debate her. We allowed her to be right. When something looked like it was going "south," we used activities she enjoyed to distract her. You and your family, in particularly, are forever in our thoughts and prayers.

  4. You don't know me, Jeff. But you are realizing the healing strength of joy much faster than I have as a caregiver for my wife Martha. Thank you for sharing. May this Christmas bring you and your family great meaning and joy.

  5. Thank you for refocusing us on the true meaning of joy and for your work to make others aware of this disease and for your courage as both my husband and I have this in both our immediate families on both sides and want to also make a difference in some way. This gives inspiration. Peace and Joy be yours for the season and always.

  6. My husband passed away about 12 years ago, after three years at home with me {we did things he loved: visiting zoos in nearby cities in upstate NY and Canada…..driving range at local golf courses ,traveling to Russia to visit a son for him (quite a trip but successful) and one year in a nursing home 80 miles away. There I visited him 3 or 4 days a week, sometimes in blizzards! After 50 years of marriage I loved seeing him.
    There was a lot of joy in those last years!

  7. Jeff,

    Welcome to the ESAG group and our world of Early Stage folks. WishI still went to the DC Forumu so iIcould meet you.

    Try coming on alzconnected and share yuor upbeat philosophy.

    Mimi

    • Hi Mimi, nice to meet you virtually. I just became a member of AlzConnect. Looking forward to sharing there. Blessings ~ Jeff

  8. Thank you for sharing with us!

  9. God bless you and your family! Thank you for raising awareness and trying to reduce the stigma.

  10. Despite the ugliness of this disease, you can not but feel beauty in this family and their outlook, involvement, and the faith that they will get thru this as best as they are able. They will not allow the disease to steal their souls. Our prayers go out to you all.

  11. Thank you, thank you– and Thank you again.

  12. It is difficult seeing my mom with this disease, but having her alive is a blessing to my family. We all thank God for the center that keeps my mom during the day on 79th Street and 4 TJ Ave. she is still my momma and I love her to life. Bless other families dealing with this disease.

  13. Thank you Jeff for sharing your intimate thoughts on approaching this disease from a perspective of joy! Well said & very encouraging.

  14. God Bless you Jeff. Enjoy your family and friends as much as possible. My wife was diagnosed with early onset Alzheimer's at age 55 and I lost her at age 62. I guess my advise is that you need to embrace your family and friends as much as possible now.

    • Thank you Bob. Sorry to hear of your loss. I will take your advice for sure and count my blessings each day. ~ Jeff

  15. Well said, Jeff! The more awareness and education we can share as to what “Living with Alzheimer’s” is really like, some of the stigma may disappear!

    You done good!!! 🙂

  16. I lost my father last Christmas Eve, it was his favorite holiday. I was blessed to be able to be his caregiver and that I enjoyed every moment with him. God bless you and your family through this journey.

  17. What would you say to someone who will not accept that he has Alzheimer's?

  18. Thank you for sharing the reality and the joy in your journey!

  19. Your a better person for your spirit about your diagnosis. Good for you and I wish you and your family all the best. Patricia Carguillo

  20. May the words of Jeff resonate with all who need to hear them. Bless Jeff with courage and strength to continue his work to help others. What an amazing soul!

  21. My best wishes to you & your family as we enter the new year in just a few days Happy “2017”

  22. It is wonderful that you are taking the time to do so much good for others. I am sure it will help you and your family to deal with this hideous disease. It sounds like you are very special man. Wishing you well.

  23. Hello Jeff and Family! My mom had Alzheimer's. I hope that you do rejoice with your family this Christmas Season and New Year and the next and next! Stay strong, and fight as long as you can keep up the fight. Keep your faith and continue helping others who know what you are going through. May God bless you and your family. Miracles do happen. Enjoy your family and make every day a beautiful day. I will pray for you Jeff Borghoff! With love, Jackie Mello, Flemington, NJ

  24. I too was just diagnosed this year. My faith and my family keep me smiling and hopeful! Keep blogging. I'd love to share experiences with you and see what tools you have in place to stay on top of things 🙂 Happy Holidays and Happy New Year!! I posted the link to my blog below. I hope we can connect.

  25. Celebrate the joy of family and each moment! We just celebrated Christmas with my mom who is 84 and was diagnosed in 2010. Life is good!

  26. Beautifully said Jeff.

    –Lynda R.

  27. Hope you and your family had a wonderful holiday and made new memories!

  28. What wisdom and courage!! God bless you and your family during this holiday season and rest of your journey. My family and I are going through this experience with my mother’s journey, progressing symptoms. She has difficulty accepting what is happening to her. Unfortunately, there are no services where she is… Many blessings to you!!

  29. Great thoughts, Jeff. Thanks for sharing.

  30. My best to you, Jeff.

  31. Blessings to you. Went through this with my dad in his 50s. Now I’m turning 50 myself. I joined a local chapter of the Alzheimer’s Association to raise awareness and funds for research. We WILL find a cure! God bless.

  32. That is a very good attitude to have. We should all do that every day, whether we have Alzheimer's or not. Life is much too short at the best of times. My Dad has dementia, which means good days and bad, but the bad seem to be increasing pretty rapidly. When we spent Christmas together this year, I was focused on him, not the disease. I was too busy making memories. Blessings, Jeff, to you and your family.

  33. My daughter recently was miss-diagnosed with a brain injury, which turned out to be early on-set Alzheimer’s. We as her care givers thought that we could help her overcome her injury. That caused us more grief than if we had known what we were dealing with from the beginning. If we had known we would of had the opportunity to educate ourselves on the best way to support her. If I could offer you one piece of advise, have a GREAT doctor that specializes in Alzheimer's and always be one step ahead of the disease, planning is so important in making decisions before the crisis occurs.
    I admire you for your attitude and hopefulness in helping others who may walk in your footsteps. May God be with you and yours and guide you through the New Year and years to come.

    • Thanks Donna and sorry to hear about your daugher. I have a very good specialist indeed, one of the very best. I'm also in a clinical trial with the Bioge Aducanumab drug trial. The awful thing about our disease is it sneaks up on us 10 to 20 years before we even notice it. Blessings for the new year. ~ Jeff

  34. Love to you Jeff, Your writing is an inspiration! Heather Bechtel

  35. What brave man you are, Jeff. And what a huge heart you have. May God Bless you and your family through this process.

  36. I say this with a tiny bit of envy, but accepting and having such a terrific attitude about who you are is beautiful. You are still who you are and always will be who you are, That is to be celebrated…by you, by your family and friends, and by all who will be touched by you all over the world.

  37. Dear Jeff,
    I agree. Altzheimer's definitely has a way of wiping away the accumulated stresses and trivia we carry around. For my mom, as I believe for you, it can act as a leavening agent — wiping away the small worries so we can enjoy every minute of our lives. Enjoy yours, Jeff. You are an inspiration. Many, many blessings.

  38. …Jeff Borghoff, please look at my website…I am living with what you have, also…..and this drug may help you too, good luck ..
    .www.adbi.com.au….or look up Tony Hogben, Bribie Island……….Regards and best wishes……Tony Hogben, Australia.

  39. Jeff thank you for this!!! My husband has Alzheimer’s (moderate/severe). He is still the same person and we still have great conversations. He is happier now than when he was dealing with his kids, money issues, and lots of other things. We had a Christmas dinner and it was just the two of us. We have 3 cats who give him joy and adore him. I am going to read your wonderful article today!

    Thank you so much. I pray that your new year is blessed because you are blessing a lot of people. Patients need a buddy system, not just nurses, neurologists, and social workers.

    • Thank you Pam for reading this post. Happy New Year to you and your husband. May you find joy in all circumstances. Blessings ~ Jeff

  40. Thank you for your wonderful article. It was such a blessing and help to read this. God Bless

  41. Incredible message of joy and hope for the holidays. Thanks for sharing your story and positive spirit. As someone living with the disease, I am encouraged to find other like minded people who help others "navigate the challenges and changes brought about by this disease."
    May you and your family enjoy the holidays!
    God bless, Paul

    • Thank you Paul. Keep the faith my friend. Happy New Year and God bless. ~ Jeff
      DM me at twitter.com/Jeff_Borghoff if you every want to connect

  42. Bless you Jeff. You have a great outlook. My little sister has Alzheimer's. She is relatively young for this disease, as it looks like you are. This disease is no longer just something old people get! Working on the Advisory Board is a great service that you can give to the community. Raising awareness is my goal.

    • Thank you Deb, sorry to hear of your sister's diagnosis. I really do enjoy working with the Alzheimer's Association and the Advisory group. Happy New Year to you and your sister. Blessings. ~ Jeff

      If your sister want to connect she can DM me @ twitter.com/Jeff_Borghoff

  43. Jeff, Thank you and your family for sharing this beautiful story. We too have been touched with early onset Alzheimers in our family with a daughter having it at 33, it's very encouraging to see such a uplifting article. Bless all of you.

  44. I am touched by Jeff's beautiful article. Thank you for sharing your positive approaches to managing this difficult disease. May love, faith, and kindness be with you.

  45. Jeff I wish I had known your thoughts 8 years ago when I learned my dear wife of 68-1/2 years passed away with Alzheimer's GOD BLESS YOU!

  46. God bless you Jeff

  47. Thumbs up Jeff. That is the way to go.I wish my brother who is living with early onset Alzheimers could be more positive and have your kind of faith and believe that he it is possible to still make impact in life.

    • Hey Josephine, If your brother ever want to speak to another person with Alzheimer's have him DM contact me at twitter.com/Jeff_Borghoff Thank you and Happy New Year. Blessings ~ Jeff

  48. Great story! I am in early stage also. At 65, I am still a working Realtor in Florida and I volunteer an afternoon weekly at my local hospital, Tradition Medical Center in the ER. I totally enjoy both. I would like to know more about eh Early-Stage Advisory Group. Who do you recommend that I contact? Thanks so much and all my best to you and to your family too!

  49. Jeff, you are still you – just a little different! Let's all pray clinical trials keep moving forward to find a cure.

  50. Hi Jeff I am In early stage,s also. I have been through the Depressing part which I was determined to beat and have done well for now anyway, I have really enjoyed Xmas this year and received so much love from Family & Friends and the Lord I struggle now with short term memory ( I actually Typed your name as Steve???). but we have a laugh at the silly mistakes I make and carry on with life and I Have learned to Laugh at myself as I feel as If I am Doing daft thing,s I am Making people happy with and through Laughter its to the greatest thing we Have and will have to i go on to make others Happy.
    May God Bless you and your,s my friend and remember you may have Alzheimers but it dos,nt have you .

    You all look so happy in the Photo Keep smiling my friend and Laugh at the silly mistakes.

  51. God bless you and your family. Joy is truly in the Lord. My husband began having symptoms when he was 56 and was diagnosed with early onset Alzheimers with logopenic aphasia age 58. He is now 61.

  52. Even though my mother can no longer communicate her thoughts and feelings that's the way she lived her life too. ..and I'm sure she would agree with everything you said. Thank you for reminding me of that and I wish you many beautiful moments in the New Year.

  53. Jeff you've helped me and many others to understand that Faith, if not a healer yet, can help you through difficult circumstances and give you joy. May God continue to bless you through your difficulties and bless your family too. Love and Peace to you and your family. Rebekah

    • Thanks you Rebekah. I know that my faith may not heal me. If I'm healed or not, I'm at peace with that, God already has that planned out. What I'm certain of though is that my faith will sustain me till the very end and has already promised me a future. Happy New Year and Blessings. ~ Jeff

  54. Thank you Jeff for sharing your story and positive outlook. You have given your family a tremendous Blessing as they will be "walking the walk" the walk with you through the coming years. As a previous caregiver for my husband,( who was a loving, caring and gentle husband, father and grandfather) I understand how important it is to face the facts, learn and share what we can to help ourselves and others. JOY and may each day be a New Day!!!

  55. Thank you Jeff, this is also our first Christmas since the diagnosis, you are so right that focusing on “joy each an every day is strengthening.

    Thank you for posting this message.

    Greg and Deborah Day

  56. Dear Jeff Borghoff, I just read your story and appreciate you sharing with us. I look up to you for your strength and courage in not just accepting this awful disease but being able to reach out to others and maybe make a difference for others facing the same thing. one of my sisters has been sick for about 4 years. She is now bed fast and looks like at the end of her life. Its been so hard for me and I'm sure others in our family to accept things. She an angle would do anything thing for anyone that needed help. anyway death is hard but my faith in God is my hope not just for me but for her also

    • Hello Deborah. Thank you for reaching out. Sorry to hear of your sister's condition. Please remember God has been faithful to us in the past, He is here with us in our current trials and His promise for our future. Blessings to you and Happy New Year. ~ Jeff

  57. My name is David Peglau I live in Fayetteville, NC I’ve done your 2 mile walk in Sept. 2015, I’ve been diagnosed in 2004 I’m celebrating my 12 years with Alzheimer’s Disease. It does slow an active person down, I stay busy volunteering at a History Museum I do word games, number games, puzzle games, on the computer nightly I use to do Civil War Reenacting I retired in 2015 I take daily walks except in rain or days with Hurricane or Tornado warnings. Dave

  58. God bless you and your family Jeff !!!!! I took care of my father before he passed from this horrible disease.
    He wasnt like you, he had been an alcoholic most his adult life, physically and emotionally abused my mom, brother and i during
    our childhood.
    he never had anything to do with us in our adult years…then i got the call from his sister that someone needed to come take care
    of him as they no longer would, i drove from Tennessee to Alabama to care for him in August 2012,
    took him to the doctor and was told he had dementia.

    • his sisters just thought he was being the same hateful, violent man he had always been, they were in denial.
      my father was already going into last stage of dementia. He had frequent UTI's, which made him very aggitated,
      but other than the UTI times, he was soo sweet to me. He had turned into the dad i always wished he would have
      been when i was a little girl. his lucid moments we would sit and i would ask him questions.
      i used to do essays on him for school as he was a policeman in Birmingham, Alabama, so i thought this
      would be a great present for my brother who couldnt be with him at that time.

      • So i wrote down questions such as…what is your fondest memory of your childhood,
        if you could change anything about the past what would you change?
        His response to the final question was…i would have spent more time with you and your brother and mom but would have treated ya'll better, and for the way i was, im so sorry.
        My brother and i treasure his final essay. I truely wish he had God in his life, and just pray he is in heaven now.

        I was only with him from August till October of 2012 when he passed away….but i do thank God everyday for allowing me to go on this journey with my dad.
        My mom has dementia, i care for her during the week and then spend the weekend with a friend of mines mom who has dementia. It is my calling to help those with dementia. Thank you for what your doing to help others.I will always keep you and your family in my prayers.

        • Hello Debbie. Thank you for sharing about your dad. Bless you indeed for your servant heart. You clearly draw strength from the Lord. Make sure you take good care of yourself as well. Love continues. Happy New Year. ~ Jeff

  59. I also was diagnosed with early onset Alzheimer's this year. I'm 58 years old. I don't take one moment for granted

  60. Hello Jeff and family,
    I am sad to hear about your diagnosis.You appear very young to have the disease.
    However , your positive attitude AND PRO-ACTIVE action to become an active member of the Alzheimer's Association 2016 National Early-Stage Advisory Group will benefit you and so many others with this disease.
    Best wishes.Keep the faith.
    Sincerely,
    Carol Lombardi Hogan
    Widow of husband ,who passed away after many years with the the diagnosis of Dementia.

    • Hello Carol. My condolences indeed for your husband's passing. We both will keep the faith indeed. Happy New Year and blessings. ~ Jeff

  61. Well Jeff, only the Lord knows what will happen tomorrow. We know that there are thousands of people suffering the most HP disease ever known, but we also know that there are thousands of researchers looking for a cure or at least a drug, a treatment, something that gives a stop to it.
    The Lord is with you and only him knows what your tomorrow will be.
    Hugs, Horacio Idarraga Gil

  62. Others with the disease would choose to be angry but you chose joy. This will bring healing to your family. God bless you for your courage.

    • Thank you Dawn. Anger is a perfectly normal emotional to feel but it does nothing to help us. The all need to do what we can with the support and encouragement of our loved ones to move to joy. Happy New Year. Blessings ~ Jeff

  63. Thank you, Jeff, for sharing your thoughts. And thank you alz.org for posting them. — Tru (current Dx of MCI, with strong LBD and Vascular symptoms).

  64. Thank you Jeff for finding your joy and sharing it with us.

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