Aug 302012
 
Rob Epp is a full-time Alzheimer's caregiver for his partner Jordan.

Courage is the thing you need most and the hardest thing to get when you’re faced with Alzheimer’s Disease.

Jordan, my partner of 17 years has younger-onset Alzheimer’s. His father and several grandparents had memory problems, so the diagnosis was not totally unexpected, but it is still hard to grasp that someone so young and vital is facing such a ravaging illness.

Since Jordan’s diagnosis four years ago, we’ve both experienced the stigma that is attached to this disease. At the time of Jordan’s diagnosis we were lucky to live in Seattle where awareness of Alzheimer’s is high. That helped us avoid many problems that I know others experience from the medical establishment. But we’ve each had to handle other issues. Memory problems in older people are expected and tolerated. Memory problems in younger people are often seen as a serious defect.

One situation that stands out in my mind happened on a visit to Florida. After his diagnosis Jordan had severe depression and anxiety, and he was taking a powerful combination of medications, which caused him to lose his balance. He decided to walk several blocks to the beach at sunrise one morning and fell. A police officer happened to be in the area and stopped in his car. His response was “Sir, Are you drunk?” Jordan responded “No. I have Alzheimer’s.” The officer repeated that he felt Jordan was drunk and drove away leaving Jordan on the ground.

My experience with stigma was at work. Because Alzheimer’s remains a diagnosis of exclusion, it takes a tremendous amount of testing to reach that conclusion. I was taking more and more time from my high-pressure job for doctor visits. Jordan and I were also emotionally reeling from new memory problems that would appear weekly. (At one point, Jordan put socks in the fridge.)  I decided to take a leave of absence. When I returned, I found that a shadow replacement had been hired, and I was forced to leave six months later.

Finding courage

When faced with discrimination you must have the courage to say “I’m here and just as important as anyone else.”  We all have weak moments but fighting the illness sometimes means fighting for yourself or your loved one. Breaking Past the Stigma of Alzheimer's: Rob Epp's Story

There is stigma or discrimination surrounding any serious illness. Just ask someone with Parkinson’s or cancer or multiple sclerosis. But, we’ve also have found that people are generally supportive when they are aware. Many “stigma moments” are really caused by ignorance. People don’t understand Alzheimer’s and many even don’t understand what it means to be chronically ill.

So often, people only think of Alzheimer’s as an end-of-life illness. Even in hospitals nurses will say “but he’s so young to have it.” Courage to change the public perception thru education and awareness is key. And it’s usually accomplished one person at a time through personal contact.

Silence is the enemy

Alzheimer’s Disease consumes a tremendous amount of energy and resources. Families are often exhausted by the sheer volume of care responsibilities. And yet this disease is very poorly understood so we also carry the burden of having to educate others.

Jordan quickly tells people that he has Alzheimer’s in phone calls and in person so they understand. He also has cards for this purpose. Family is kept updated about his condition and even the little ones are told what to do if there is a problem. But education is also reaching out to the public.

I find time to do advocacy for the Alzheimer’s Association. It’s not easy since I don’t have family to help care for him when I’m gone, but it’s essential to raise awareness and unite people in the effort to fight this illness and help the people who have it. If people understand then they won’t be afraid. And if they’re not afraid then there is no stigma – just the disease.

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About the Blog Author: Rob Epp is a full-time caregiver for his partner Jordan, who was diagnosed with younger-onset Alzheimer’s four years ago. They live in New Hampshire.

Photos by Shannon Power

  28 Responses to “Breaking Past Stigma & Finding Hope: Rob Epp’s Story”

  1. Hiya Robb …my name is Margaret ..think its amazing how you support Jordan as i know how hard it can be ..you didnt say how old he was ?? …i am in the latter stages with my mum .had some horrific times and as you say the ignorance to this disease is embarrasing to say the least which is why i think you are amazing to engage in the activities for awareness that you do …
    I most definately will follow suit when my mum is no longer here as i only get out 6 hrs a wk …
    Sorry if i am not making sense lol..getting tired and was so touched by your story ..God help both of you what you will have to endure i have been a carer for my mum now for 4 yrs …its a struggle in every aspect of daily life .
    It is a long Goodbye which i have had the privelage to do for my mum ..
    Take care of your self too Robb it is very draing to say the least God Bless both of You xxxxx

    • God Bless you Rob-I work as a Activity Director at a assisted living /Memory care Unit.I see it every day and see what the families go though.That's why i try and make differents each chance i get.Everyone that can walk or help raise money need to try- we need to come together and do what we can to help find a cure……..GOD BLESS THE WORLD.

  2. Thank you for sharing your very personal struggle. God bless you both!

  3. How old was Jordan when diagnosed and how old is he now? My mother-in-law has alzheimers and deteriorated after her spouse passed. Family took care of her for a couple of years but then when she becasme more than we could care for, she had to placed in a nursing care facility. It brings us all guilt that we had to do this but she became combative to her caregivers and when there are greatgrandchildren of young ages in the home, it becomse almost impossible. My toughts and prayers are with you. God bless.

  4. Just to let you know that I was diagnosed with alzheimers in 2004 when I was 54. I was put on two different medications which I have been taking faithfully. But recently this past April I was told to start taking coconut oil. Since I take about a teaspoon a day. And my memory has been better. FYI.

    • Linda Miller, what 2 meds do you take? My mom is 56 and was diagnosed with early onset in 2008. She has been taking coconut oil as well. Just curious.

      Any advice helps!

      God Bless,

      Britney

    • Hi.
      How is the status now with coconut oil treatment?
      My mom dignosed with Alzimers since 2007 and we are trying coconut oil treatment (2 tspn a day) and we also find her health little improving.
      Saroj Puranik

  5. Thank you Rob for sharing your journey. I was honored to hear you speak at the conference last year. The love you and Jordan share is wondrous. All too often we consider this a disease of aging, and not realizing how this chronic disease may affect young adults. As you mentioned, beyond the stigma, we neglect to appreciate the financial and emotional toll. I am hopeful that as more people–as strong and dedicated as you are–speak out, the awareness will strenghten and we can connect a stronger movement for more more education, research, funding… then someday we will live in a world without Alzheimer's and other related dementias.

  6. Thank you for sharing your story, Rob. I'm also curious as to Jordan's age. My mother is in the later stages; I'm 46, and quite honestly terrified that I will develop the disease.

    I wish you and Jordan all the best… he's fortunate to have you.

    On thing is for certain, we must find a cure for this awful disease.

  7. Rob, you wrote a wonderful portrayal of what has happened to both of you because of Alzheimer's. David and I know how lucky Jordan is to have you in his life. You are a beautiful person, the most caring partner, caregiver and friend. I will be bringing information into my office on Tuesday to organize a team for the "Walk to End Alzheimer's" in Hollywood, FL in November. David and I want to do this in honor of Jordan and you. We will keep you posted… we love you both
    Lynne and David

  8. Thank you for telling the story , My very best friend like asister developed it in early 50s , now 63 and had to go in home as too much for her 87 yr old Mother to cope with at home , andalso my friends Husband died ina car crash 3 yrsago no children
    Thank you again , and i praya cure will be found
    Jean Matthews
    England

  9. You are spot on!
    I retired as a nurse consultant with the Alzheimer's Assoc. and my youngest patient was 41 at time of diagnosis. My husband was diagnosed last year but he is 73; I agree, the stigma remains for all but particularly for those "too young" to have AD.
    Sorry for you both; it is a long and difficult road. Blessings to you and yours. Reach out for support and respite that are so essential. Consider joining MEMORY PEOPLE started by another early onset male ….it is on Facebook.

  10. My husband is 80 yrs young, we’ve been married 51 yrs and he had had this disease for over 6 years

    its hard taking care of him. He is incontinent and needs feed all his meals, I have help coming in to get

    him up from bed and with bathing.

    Bob talks very little and is in last stages but he is well taken care of

    Everyday is a blessing but it is very difficult, tiring and very lonely, Good Luck and you both our in my

    prayers. God Bless.

  11. you both are great. i was told last year i have dementia. i hope the best for you both. i am 52 yrs old and i have alot of stress at work an my husband doesn t understand . Rob you are a very giving person, Jordan what is your age now? MY PRAYERS FOR YOU BOTH.

  12. When my husband of 31 years was diagnosed with this disease, I was ready for the fight of my life, but instead he gave me the best part of my life.

  13. Hi Rob, I recently completed this journey with my sister, diagnosed at age 48 and passed on at age 55. My sister was the most dignified person I know, but suffered so many indignities and trials with this disease. Losing her independence, her feisty nature and finally her ability to speak were some of the difficulties she encountered and managed as best she could in her graceful way. You are not alone, Rob. I'll send out prayers for you and Jordan.

  14. Rob, I share the journey that you and Jordon are experiencing. My wife was diagnosed with AD at 57, in 2008. I am 62 now, and take care of Shellie full time, having to take early retirement last year, as a school teacher. The going is difficult, and people truely are stunned that she has Alzheimer's so early. It is important that you take care of yourself, as best as you can. I'm fortunate to have my family helping me out, as my wife's family does not. I go to two caregiver support groups, including one solely for early onseters. These now are among my best friends. Good luck with your trip. Mike

  15. My husband is in his 6th year with Alzheimer's. He is now in a nursing home as I could no longer care for him. Since the age of twelve, I have been a Christian. All these years, I have seen the church do many things to help people. But when it came time that I needed help. None was available. My faith has been tested many times over. When they ask you how you are-they have no idea what the patient of caregiver are experiencing. I am trying to have a seminar on the disease in our church. I thought policeman were suppose to help people!! I'm trying to promote education on the disease as a caregiver and a nurse.

    • so true, my mom passed on sat sept 15 after a 3 yr battl,e, no one offered a hand! now they all want to comfort me at her death.. i told them i need to be alone.. such a horrific disease! God bless the caretakers.

  16. Excellent story writing. My Mother is 92 and I find if I tell people she has a menory problem they do not talk to her. Or treat her like she has lost her mind. I include her in the conversation and she answers slowly , however people still have no "heart" or patience. It has caused me to be more understanding. A good thing.

  17. Is there any group for same-sex partners in which one has Alzheimer's? The local Alzheimer's Foundation knew of no such groups in this area. Neither did the national foundation.

    Rob & Jordan: You have my sympathy. I hope that when the time comes you will find an acceptable Alzheimer's facility. I retired so that I could give full-time care to my partner (age 83). After two years, I found that I could not keep up with the demands. My partner is now in an Alzheimer's care unit. It was a very hard decision, but one that I had to make. Fortunately his family have been supportive, though it is difficult to cope with the loss.

  18. Thank you for sharing your story and your struggles and letting us have a glimpse of what it is like to care for someone with early-onset. I am 24 years old, a CNA, working mostly with clients with Alzheimer's. I feel truly blessed and humbled and honored on a daily basis working with the people I do. It is such an awful disease, but people like you make the journey not so awful.

  19. As an LGBT Caregiver myself, I appreciate this article. Thank you for sharing and thank you for your courage. If you are looking for LGBT National Resources, start with SAGE USA…They will be easy to find on the net!

  20. Thank you for your story. As a social worker working with the older population, it is amazing how people just say as you said "they are just old." I hope one day to make a difference with the preception and stigma of Alzheimers. Keep up the wonderful work of caregiving

  21. Jordan and Rob,
    Thank you for sharing your story. I feel like my partner and I are facing many of the challenges you speak of and it helps tremendously to hear other's stories and ways they are coping. My partner developed Alzheimers about 5 years ago (we think) and is now 65. Sarah is probably now considered at the moderate level of Alzheimers. Fortunately we are in a community surrounded by friends and lots good support for Alzheimers and being gay. We also have wonderful and loving support from Sarah's 3 sisters and my 3 sisters from afar…and many other family members. Sarah and I have already experienced Alzheimers firsthand with my mother and Sarah's father. As hard as it was to go through the journey with my mother and Sarah's father (both have passed aways a few years ago) – it really is much harder when it's your own partner or spouse. We are each trying to move through this challenging journey with as much grace and joy as we can muster. It helps to know others are out there facing this as well and feel the support on many fronts. Theresa

  22. Jordan and Rob,
    Thank you for sharing your story. I feel like my partner and I are facing many of the challenges you speak of and it helps tremendously to hear other's stories and ways they are coping. My partner developed Alzheimers about 5 years ago (we think) and is now 65. Sarah is probably now considered at the moderate level of Alzheimers. Fortunately we are in a community surrounded by friends and lots good support for Alzheimers and being gay. We also have wonderful and loving support from Sarah's 3 sisters and my 3 sisters from afar…and many other family members. Sarah and I have already experienced Alzheimers firsthand with my mother and Sarah's father. As hard as it was to go through the journey with my mother and Sarah's father (both have passed aways a few years ago) – it really is much harder when it's your own partner or spouse. We are each trying to move through this challenging journey with as much grace and joy as we can muster. It helps to know others are out there facing this as well and feel the support on many fronts. Theresa

  23. Thanks for sharing your story and being real. Telling our stories help to lessen the stigma for those with early onset AD and also helps care givers to know they aren’t alone. While there is so much common ground with AD at any age, early onset has so many difficult hurdles and so much grief. My mother was in her early fifties when she was diagnosed. It’s very hard for her, the family and especially my dad. The more people around us understand the easier this burden is and the more we can talk about the joy, too. I recently found a book that really helped me laugh (believe it or not) and cry about my experience with my mom. This short graphic novel called Tangles (by Sarah Leavitt) is so brave and revealing. I reccomend it for anyone dealing with AD in any way. I got it through Amazon. Anyway, thank you for sharing and love and strength to you both.

  24. Wow Jordan is so lucky to have you! And I'm sure vice versa as well. What an extraordinary story of courage and perserverance – thank you so much for sharing and for your strength and honesty.

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