Jan 122016
 

Let me start by simply saying thank you! Thank you for your tireless work in the medical field. You may be prescribing or handing her medication, and checking for side effects. Maybe you are the nurse’s aide who helps her get dressed in the morning and reminds her where the dining room is. Are you the social worker who takes my concerned calls? Or the lab technician who draws her routine blood work? Maybe you are the one who did her chest X-ray when she had that horrible cough.dil

Whatever role you play in the care of patients with Alzheimer’s disease, please know that I see you. I see how you care about and even love her. I hear you lovingly call her “honey” and “sweetie” and laugh with her when she is confusingly silly. You are so important in the life of a patient with Alzheimer’s disease.

I am a healthcare professional myself, a nurse, but first I am human.  I am the daughter of an amazing woman who has been stricken with a horrible disease. I would like you to see the person my mom was, not the person she is now. Everyone with Alzheimer’s disease has a life story behind them. I would like you to hear Mom’s. She had a life before this disease took her away from us and into your care.

My mother is one of 15 children, and was raised on a farm in upstate New York. Of those 15 children, seven of them have died from, or currently have, Alzheimer’s disease. Our family suffers continually as we watch our dear mother fade farther and farther away from us. I hope you realize, that sometimes, you are not only taking care of my mom, you are taking care of her family. That sometimes your words comfort us and sometimes they anger us. We are really doing the best we can with this very important loss in our life.

So thank you for taking a step back — to see who my mom was before Alzheimer’s — as you care for her every day. And thank you for taking the time to get to know the stories of all the patients in your care with this disease. I bet you will find they led interesting lives. Please find the joy in them.

They need you so much. They need you to see them, to see they are just as human as you are. They need kindness and respect. They need you to help maneuver their very confusing days. They need dignity. They need silliness and smiles, compassion and love, patience and hugs. They need you, and their families need you.

About the Author:

Christine Dileone MSN, RN, is an Assistant Clinical Professor at the University of Connecticut School of Nursing.  She uses the resources of the Alzheimer’s Association in her teaching, specifically on communication techniques with dementia patients to maintain dignity.  She is a Ph.D. nursing student at the University of Connecticut, and plans to continue research with individuals with Alzheimer’s.  She coordinates a monthly Alzheimer’s support group and is actively involved in the annual Walk to End Alzheimer’s® as well as The Champions in the Fight Against Alzheimer’s Women’s Campaign.

 

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  21 Responses to “Dear Healthcare Professional Taking Care of My Mom with Alzheimer’s”

  1. A wonderful gesture. So very true. Alas, a perception often missed even within clinical circles. Being close to those afflicted with dementia becomes something of a privilege in the most profound sense of that word. A life lost to a disease which appears to show little mercy, is thus addressed by those who are practising TRUE care. Christine acknowledges what we as 'carers' or relatives understand to be a blessed pathway to both dignity and, perhaps, solace in those affected by Alzheimer's and other dementia-related diseases. There is but one life, but to nurture, as with the newly born child those stricken with this disease and to nurture with love, must evoke nothing but heartfelt thanks to all those Healthcare Professionals who daily carry out that very difficult role.

  2. Well stated tribute to the care takers a d your mom. A better way of making everyone aware of alzheimers.

  3. My grandmother passed away from Alzheimer's in 2014. At the time, she was living at a senior living community in Connecticut with a memory care wing. One weekend my cousin and I went to visit her with a photo album of pictures of her throughout the years – in her teens, as a bride, with her young kids, and with her grand-kids.

    My cousin is a nurse and says she loves to see pictures of her older patients when they were young so on the way out we stopped by the nurses' station and showed them the album. I'm not kidding when I say that 3 of them stood there and looked through every single picture (it's a big book) – they were laughing and commenting on how it gives them such a different perspective to see these patients during a much happier moment in their lives and reminds them while Alzheimer's takes so much away, it can't take away the life they lived.

    I was so touched that they took the time to get to know my grandma a little more and hope that they know how much we appreciate the care she received. It's a tough industry to work in, and it takes very special people to do it.

  4. Such a wonderful letter to some of most amazing people on earth. My mother died from Alzheimer's a year ago, She was sick for a very long time – at least fifteen years – the last five of which were lived in a nursing home. You have expressed my admiration and thankfulness to all who helped care for her. Particularly the aids who all seemed to be working two jobs to make ends meet, but managed to be kind and compassionate non the less.
    Raise the minimum wage!!!

  5. This letter is wonderful. I worked to write like this when Mom passed away last January, to thank so many important people to us both. I feel like your words are my words to the many people who we met on our journey through this horrible disease. It amazes me that like my mother who was one of 11 and @ 6 have had some for of this disease you have a similar family history – this terrifies me. Most importantly I appreciated those who took the time to know who Mom was and help her remember happier times – thank you doesn’t begin to say enough

  6. blessings to you and your family

  7. My mother passed away Janurary 2014. She had Alzimers. Two weeks later her sister Bea passed away. Six months later another sister of hers passed away. They both had Alzheimer’s. She has 2 sisters still living. One is in a Nursing home with Alzheimer’s and the youngest one is now showing signs. This is such a devastating disease. It takes a toll on the entire family. We visited our mom nearly everyday. Even though we knew she forgot who we were she always smiled when we came in. It broke our hearts to see what this does to someone that was always there for you. My sister went everyday to feed our mom her lunch. We had birthday parties, Christmas parties and Mothers Day parties. We know she didn’t have a glue, but just to see her smile and laugh was wonderful. We all miss her so much. Our brother passed away 3yrs before she did. She never knew. The only thing I can say is “When the end came we were all by her side. Holding her and letting her know it was okay. We would be fine. Did she know it was the end for her? I really don’t know, but there was a smile on her face”.

  8. My father in law was recently diagnosed with dementia. He has been exhibiting symptoms for a few years now. It seems that his symptoms are progressing much faster now. I have found some really good articles online that help with understanding dementia. One of them that I found to be very helpful was from an oxygen hyperbarics clinic in Orlando Florida. You can find their information here: dementia. I would appreciate any additional suggestions on resources that may be helpful.

  9. My Mom passed away on June 14, 2015. This hits home. Thanks for caring. Stay blessed.

  10. I always treat them the way I want to be treated if it was me or even my parents.

    When they have moments of clarity I hear how much they appreciate me…. My compassion goes to the family has well…. that’s why I am a PCA.

    I LOVE your article…..

  11. Please allow me to speak on behave of the healthcare professionals by say "Thank you for allowing & trusting us to take care of your loved ones. It is an honor"

    I am a Home HealthCare Nurse(CNA) who works one on one w/residents in their home/apartment on a floor specially designed for dementia & Alzheimer's in a very well respected retirement community. I can only do what I do in the name of Jesus Christ & I thank GOD everyday, several times a day, for giving me the ability to Love & care for His children..

    GOD Bless

  12. I was very fortunate that my Mom had a staff in her skilled nursing facility that saw the person she was before Alzheimer's. My mother was a nurse for over 40 years, and she was very comfortable in the hospital setting. One day the staff found her at the nurse's station writing on a chart. Instead of just taking my mother back to her room, one of the nurses found an empty chart, put some blank paper in it, and gave my mother some pens and highlighters and let her "chart." It became a regular thing for my mother to sit and "chart" with this nurse. At Mom's funeral the nurse told me how much she enjoyed spending that time with her, and how much she was going to miss charting with her. I will always be grateful for the caring staff that surrounded Mom in her final years.

  13. I couldn't have written a better letter to the caregiver of my Mother than this one! It is so spot on!!!

  14. Nurses aides have a thankless job, especially those caring for Alzheimer/dementia patients. Most do an excellent job. However, education lacks in regards to understanding this horrible disease and the stages of the disease—how to speak to someone with Alzheimer’s, what to say, what not to say and how to keep the patient stimulated and active. Continued education is most often lacking in dementia/Alzheimer facilities as there are no funds to provide continuous education. Most just provide a handout and ask that it’s read but these aides require “live” training sessions funded by the Alzheimer’s Association. Some states require very little training. The nurses aides, who have the brunt of the work, do a great job with caring but many still lack an understanding of the disease. We saw it every day for 8 months until my Mother passed. This disease is growing by leaps and bounds but it still lacks misunderstanding by those in Congress, otherwise, more money would be provided for prevention, care and education.

  15. Thank you for the wonderful words. I am an Oncology nurse and I am also so grateful for the care my mother, who will be 91 is receiving.
    She has been in a Memory Care facility since September of 2015. The staff is joyful and caring, bring a smile to her face. I am fortunate that she is in a facility with planned activities she can participate in during the day.
    They offer a support group that meets monthly.

  16. My husband has dementia. We continue to live in the small town where we spent the last 50 years. I think it is important that he is among people who remember him in his past life…. A teacher whose students made many important contributions to our community, a scout leader, a sailor, a Habitat for Humanity worker, a carpenter and so on. Frequently we'll meet a former student who will comment that my husband was his favorite teacher. If we moved to a warmer climate or even to be by our children, we'll lose all that. My village is a comfort to me as well.

  17. Thank you so much for your article, it brought to my attention any and all who assist my elder brother afflicted with Alzheimer's who deserves thanks as well. These are people who are not lacking in knowledge and skill. They have compassion, empathy and kindness. I am grateful for those who assist my brother, and me, on this roller coaster ride. The daycare personnel, employees and volunteers, who make each day a better one for him. I know this because he actually looks forward to going, rain or shine. His doctors and staff who care for him and us. The "miracle aides" who help him at home these days, they know the right words to say to him, make him laugh. I trust them, know they care for him and me as well. His barber, who makes him feel like "one of the guys." People who ask how he's doing, how I'm doing, who allow me to "vent" my feelings and frustrations while on this journey with him, thank you. Everyone who gives me a much needed break, to recharge myself, I thank you. Yes, there's too many to mention. Caregiving is not easy; the mental task may be harder than the physical at times, days and moments are different, so, caregivers deserve a thank you as well. We make a difference. Remember to take care of you. God Bless All Caregivers!

  18. great article. my mother was diagnosed at 64 and I was only 23 and had to take on the responsibility myself of care and going through numerous nursing homes. It's sad to watch her go down this road, but i know that before this disease she was a person full of life and spunk and even when memories go in and out, the smiles on her face and big hugs, i know she's in there. Caregiving is so NOT easy. it's mentally and emotionally exhausting and frustrating.

    So all of you caregivers out there… Take time for yourself and enjoy the little positive moments you get with whomever you are caring for because you never know when that will go away.
    Take Care All… Prayers for all of you doing this job!!

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