Dec 062013
 

early onset alzheimer's“In all likelihood, you have mild cognitive impairment that will eventually lead to younger-onset Alzheimer’s disease, especially with your family’s history.”

With that brief pronouncement, my world, my husband’s world and our children’s world changed forever. My husband Jim was 48 when we heard those words. I was 40. Our daughter was 9 and our son was 6.

I wasn’t exactly sure what it all meant. The more reading and research I did, the more depressed I became. Words and phrases kept jumping off the page….”no cure,” “death,” “progressively worse,” “dependent,” “no treatments.”

I started to separate myself from Jim and the disease to the point that I became almost businesslike. Researching, interviewing doctors, contacting the Alzheimer’s Association – I was just trying to figure out what was happening and what kind of timeline we were on. I soon found out that there is no timeline. In fact, no two patients have the same symptoms at the same time, in the same order or on the same schedule. It makes for an isolating and desperate feeling.

With two young children at home, I was unable to wallow in my self-pity. I am no longer afforded the luxury of thinking too far ahead, dreaming of a life enchanted. Luckily we are an active family with hectic schedules; this helps me focus on my to-do list and not on our plight.

I have slowly developed an awareness of the new Karen. The old Karen liked to think of herself as a giver, and she was to a certain point. But the new Karen must constantly be giving to Jim, the kids, to others. And it feels good.

Lifting my head off my pillow, pushing away the covers and facing the day ahead of me takes every ounce of self-motivation I can muster. But if I don’t, I won’t get paid, the kids won’t have breakfast, their lunches won’t get made and they won’t make it to school. It is a cycle, and everyone lives it.

Slowly – very slowly – I have pulled myself out of the fog, out of the darkness. Don’t get me wrong; I still have moments of sheer terror and obliterating pain. But I have found my life again. I thought I found my life when I met Jim. Then I thought I found my life when I had each of my children. But I think I was always trying to figure out what my true calling was. I felt I had a purpose, but it eluded me until this past year.

I started by doing advocacy work with the Alzheimer’s Association in Washington D.C. That led to some interviews about the disease. Then, with encouragement from friends, I started writing a blog chronicling our path through younger-onset Alzheimer’s. Emails started pouring in, then more speaking engagements and interviews. Suddenly I realized I had found what I was looking for. I was looking for my life’s calling and this was it. It wasn’t what I would have ever expected or guessed or hoped for, but it is my calling all the same.

Jim’s mother and brother died of Alzheimer’s disease, so it doesn’t take a genius to realize our children have a high probability of also succumbing to this hideous malady. There is my motivation. There is where my strength starts and ends. I don’t feel as if I am going through a mid-life crisis as much as I am going through a mid-life awakening.

Life is so much different since our world became engulfed with all things Alzheimer’s. I feel like a small pilot light inside of me has now been ignited and is ready to spread like a wildfire.

No day is the same and no day is easy. There are days when Jim barely acknowledges me or our kids. He is in his own world. It is hurtful. It is lonely. It is heartbreaking. And I know it’s only going to get worse.

Luckily, I know I am not alone. I think of what I am going to do to help others. By helping others, I will help us. It is a continual shifting back and forth, like water in an eddy.

There is a sense of duty and a sense of awareness that I have never felt before. It empowers me to not only get out of bed and make it through my day, but to do it with a sense of purpose, with an understanding of pain, and the ability to feel powerless against a force I have no control over. There is no way of knowing when it will be felt or when it will strike a new low, but if I were to let myself lose focus of the bigger picture, I would be crushed under the weight of uncertainty that is equaled out by a certainty of what is to come.

I am strong. I am weak. I am a caregiver for a man with younger-onset Alzheimer’s disease.

I will survive. It may not be pretty. It may not be quick. It may cost me everything I cherish, but I will survive with the help of friends, family, strangers and myself. I must survive for my children and for other caregivers that are struggling just as I am. We will all survive together, knowing that we are not alone. Feel the love and the power of others rooting for you to endure.

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

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  35 Responses to “When My World Became All Things Alzheimer’s”

  1. I am thinking of you and your family Karen. Thank you for sharing your story. My mother was diagnosed with Alzheimer's and although I don't know you, I feel your journey, as tears roll down my face and the energy of your words course through me.
    All the best. Keep being your amazing self.

  2. I can relate to your journey. My mom was diagnosised in 07 and I am now making every day beautiful for her. Her husband gave up in 10 when the word Alzheimer’s was used. The following 24 months my husband and I tried provide relief 250 miles away. Long story short I retired early to spend more time with my mom. It took 18 months to convince her husband that she would be better off living closer to my husband and I. Life is now good. My husband says “mom enhances our life”.

    I have a mission and purpose to keep her happy and safe.

    She continues to spread happiness and joy to all she meets.

    Thank you for letting me share a piece of my story.

    • Linda, how did you convince her husband that she would be better off near you? I ask because I am in a similar situation and my stepfather refuses to consider it. He says he will take care of her as long as he can (that time has come but he won't acknowledge it). It has been a very frustrating experience to say the least. My brothers and I just want her to be safe, clean, happy and loved. Thank you for your comments, it is helpful to hear that others are in the same situation. Best of luck to you and your family.

  3. Blessings to you and your family. At 54, my husband was diagnosed with Parkinson's with Lewy Bodies. He experiences memory loss. I, too, approached it as a project manager to navigate health care, legal, financial and advocacy. Seven years ago, my mother had been diagnosed with Alzheimer's. My husband handles this illness with a grace that I would not be able to achieve. My thoughts are with you.

  4. Praying for you–just found out my wife has it at age 52. We have teen boys and it is hard for them to understand.

  5. Thanks so much for sharing and encouraging words.

    Six months ago my 53 year old husband was diagnosed with semantic dementia.

    It has turned our world upside down.

    I’m still in a state of shock at times and feel so alone at times.

    But I stand in faith and know I will get through this season.

  6. My mother & my life partner of 25 yrs., both have dementia.My mom has Alzheimer’s disease& my husband has vascular related dementia. I’m glad that other people can relate to what I go through. Keep up the good work. Sometimes I feel alone, but then I’ll read a blog like yours.Thanks for sharing.

  7. Karen,
    I read your article and my heart goes out to you and your family. My mother has Alzheimer, was tested 2 years ago. She will be 88 next month. This has been one of the hardest thing I have every had to do, putting her in a nursing home. With me working and trying to keep all level, I see her almost every day. She lived with me for 14 years. You always think Alzheimer attacks older people, but I guess this monster can hit anyone. Since putting my mother in the nursing home (which she is in an Alzheimer wing for ladies) some days I question myself, because she is just fine and other days she very troubled. Thank God that she still know all her family, but she does not remember what happen 5 minutes before. Just know my prayers are with you and your family. I know that there STARS in your crown.

  8. Karen,

    Thank you so much for your blog about Jim and your family. My wife and I also have at least one parent who has or had Alzheimer's disease. I have also had an uncle and grandparent with the disease. We are in our early 60's. In one of your next blogs, would you speak some about the signs Jim had before a formal diagnosis, if that is not too difficult for you. Thank you.

  9. My 84-year olf mother is in the beginning of stage 3. My 84 year old father is showing some cognitive behavior and blind from macular degeneration. They lived in AZ and my brother (caregiver for 7 years) starting to hit them. I flew out – sold their house in 1-week, spent a long day in court with my brother trying to block the sale, closed on 5/31/13 and moved them to Iowa, where I live. I had a small condo, sold it, bought a bigger house with no stairs and now my folks, and my daughter who's started college. My delima – I've worked 17 years for a Government office (IPERS), have family insurance for my daughter and I. We cannot afford full time care for my parents. My parents make too much to qualify for low income and so I worry. Do I quit my job? What about my pension & insurance? Does it make me a bad daughter that I'm struggling with this every day. Time Marches On as the song says and things are only going to get worse. Then I worry that when I need the money for my own care, it won't be there if I quit now. Any advice for anyone?

  10. Karen,
    My mom had the disease for 20 years, but it took so long back then to get a 'diagnosis' and even the support I needed. I am so thankful you have such good support and bless your heart for being there for others!! You are an amazing woman. God is blessing others through you and your family. I am so sorry you're going through such loss of such a wonderful husband. I can't even imagine the pressure you're under. I do hope you take time for just you when possible. I'm a caregiver support group facilitator with the Alzheimer's Assn and am constantly stressing the need for the caregivers to think of themselves too. You have to put the oxygen mask on your own face before you can help others. There is no shame in that at all. I wish you love and peace and hope for your kids' futures. I know by the time they are 48 there will be a cure. Just believe that. God bless you.

  11. My wife was diagnosed at age 57. She just suffered a seizure and we are in the home now I am so frustrated with life that it really is getting more difficult for me. It seems that the whole world is closing in at rate that it is hard to defend. I know I can make a difference but I am not sure how. I have 3 adult sons that I worry about now. I am encourage at least share some thoughts and I know the only ones that can really know how we feel. I know they say that it is happening to younger ones but for me it seems that I am the only one dealing with it. It just helps me to share. As you can tell this is my first time writing about it. Please have the best holiday you can and God take care of you.

  12. OUR WONDERFUL FATHER WAS DIAGNOSED WITH EARLY ONSET ALZHEIMERS AT AGE 52 HE DIED AT 61…WHAT A LONG , TERRIFYING JOURNEY THAT WAS. WE HAD NO OTHER CHOICE AFTER SO MANY HOSPITALIZATIONS TO PLACE HIM INTO HOSPICE AND FOR HIM TO GO INTO A SEDATIVE COMA. DADS BRAIN WAS SHORTENING….IT WAS SO AWEFUL……..MY SISTERS AND BROTHERS INCLUDING MYSELF STILL MOURN EVERYDAY SINCE DADDY PASTED NOVEMBER 30TH 2011..WE ARE A BIG ITALIAN FAMILY…DADDY WAS A NUCLEUS…WE R TORN….I CAN TELL YOU THERE ARE STAGES TO THIS DISEASE..

    LOVINGLY AND HOPE,

    KRISTINA RESTIVO

  13. My wife was diagnosed with Alzheimers Dementia at age 60 after many years of complaining about her memory and having depression related to her struggle. Last year she suffered a blood sepsis leading to a brain encepalopathy setting her cognitive functioning behind. She has since returned to her prior level of functioning. Every day is a gift/struggle. We have tried available medications, cognitive training and a clinical study. I keep on looking for hope!

  14. Reading your story was a true testament of love and nurturing. The disease is one that has robbed me of my mother since she has been diagnosed at age 71. I love her with all my heart and until there is a cure I send you and your family well wishes. Your amazing!

  15. Thanks for sharing. I could add my name except for the kids, mine are grown and that is a blessing-but all you feel, I feel.

  16. Karen, Thanks for the uplift. My wife was told she has both Alzheimer's and FTD in 2008. I had to give up the good fight yesterday and placed the love of my life in a basic care nursing home. Hard day, but I'm getting her better care there than I can provide at home with hired help. 60 is even too young.

  17. God gave you the strength and you accepted it and and you plow on! I am so impressed. I am dealing with watching my mom die both physically and as the person I knew and loved. I cannot imagine a day where my mom doesn't know who I am. And yet, like you said, it will only get worse.

    Good luck to you. I pray I have the strength you do to fight the good fight.

  18. My mother is 96 and has had Alzheimers for the past 15 or more. It has been difficult all along, but after the first few years of sadness, anger and frustration, I have learned to live a "normal" life with mom. I go out to do the shopping, and she is always with me. When I do the wash, she helps with the folding. She counts the pills to put in our containers ( I am watching). i let her take the bath by herself (I am watching), she also gets dressed and eats by herself. My background is Psychology, and I have applied this logically in our life. I do not help her unless she requests it, or I see she cannot do it on her own. Continue with the same environment, and the same daily life. Any changes are very negative. Days are good, and days are sad, but things must continue as "normal" as possible. Good luck to all.

  19. My beautiful wife and buddy was diagnosed 4 years ago at the young age of 62. I retired early to take care of her as I am the only caregiver. Her mother and uncle both had Alzheimer's. We live for the moment and try not to think long term as it only depresses me. Like others, our 3 adult children are our future concern as my wife's mother and uncle both had Alzheimer's.
    God bless to one and all. We pray for a cure every day.

  20. Remember to treat. Yourself well, take care of you first so you will be able to take care of those depending on you.
    Be honest with yourself and acknowledge the job. May be too much for one. Person. ,that does nor mean you have failed , it means you recognize your. Limitations and we all have them.

  21. As I read through Ms. Garner's blog, I thought she was writing about me.

  22. LIVE… LAUGH… LOVE.

    I am a caregiver as well. Take a little time for yourself during this journey. It is important.

    God bless you.

  23. Iam 56 have had vascular dementia for two years,GPS keeps me driving, grand kids help me for everything, keep up Hope Gerard

  24. Dear Karen, Your message brought tears to my eyes, tears of sadness and tears of amazing grace. You are an angel for your family. Give to yourself too and take care; visiting with your friends, going to movies, having lunch together, enjoying nature and the beauty of the world.

    I was diagnosed this past summer with early on-set Alzheimer's at 64. Forty eight years old; I can't imagine it. You are a beautiful, loving and giving person. My thoughts and prayers are with you and your family. Love and Peace, Kathy

  25. Dear Karen I feel your pain. My husband Dads has demetia n is living with us. It is very hard but we hang in the daily n try to make the best we can do. Our prayers are with you. Yolanda, from Sugar Land Texas

  26. Hello Karen Garner,
    I read what you wrote about your husband and I just would like to say that I live with my mother and she is 82 years old and she has Alzheimer Dimentia. I know what you are feeling because I am going thru this everyday with my mom. And it is exactly as you put it. My mother is not getting any better only going down hill, I do pray that some day there will be a cure for this for the future of others that suffer from this terrible decease. My prayers go out to you and your family, and may God above see all of us that have a family member or friend that are suffering from this. from Martha in Florida

  27. Just remember, everyone, that even if your loved one forgets who you are, you will always remember who they are! I think that is from the movie The Notebook.

  28. Hi Karen,
    I have been full-time caregiver for my mom, for about 14 yrs. While both my sisters work full-time, I care daily for my mom's needs. My siblings refuse to accept my care of mom as a full-time job. While they take long weekend trips out of town & take vacations yearly, I get one wknd off a month & take her on vacations w/my husband. My husband is kind, loving, generous & absolutely loves mom, but @ times we both feel cheated of the freedoms we no longer have. I have promised my family, that I would continue to care for mom as long as I can, or until she is no longer cognizant of her surroundings. I don't want a pat on my back, I would just like to be able to have my requests, for more time for myself & my husband, acknowledged & granted. So,caregivers, make time for yourself. Enjoy your husband, mom, dad, sister, brother or whoever it is you are caring for, but more importantly, enjoy yourself! Afterall, your caregiving is only as good as the care you are giving yourself.

  29. Hey Karen,

    My heart goes out to you and your family. It doesn't take much digging to find out other people are in the same boat or much worse than you are. My wife Robin, was diagnosed with Frontotemporal Dementia a couple of years ago at age 49 and is completely bedridden now. FTD is much like Alzheimer except it affects your behavior and emotions first then your memory. Reading your blog has reminded me that we had many good years and at least our children are grown so that's not on my plate. It has to be awful mixing raising a young family along with a spouse suffering with this type of disease. I'll keep you in my prayers, wishing you all the best – may God bless you and your family.

  30. I have a question I cannot find any help with. My mother cared for her mother who died from Alzheimer's. Her biggest fear is getting it. We'll guess what? She is showing signs of it and I insisted she be tested for it. We went for an evaluation and they want her to have further testing. She is freaked out, depressed, etc. about the diagnosis. Does anyone have suggestions how to help HER cope with the diagnosis? All I see is information for the caregiver.

  31. Dear Karen,

    God bless you and give you the strength to be able to deal with this situation/illness. Before 2008, I

    Had never really heard of dementia or alzheimers. However, after meeting my the fiancé now husband I am more aware of both. My mother in law has alzheimers, it’s been 6 years now . My father in law was her primary caregiver but seems to complain about any and everything. We offered him help and suggested so many other stuff but he refused and was acting like he was superman and sometime last year my husband decided to do a trial run by placing her in a home for a few days to give him time off…. Wrong move as he went to pick her after only one or two night of four nights because it was bank holiday. Anyways, we soon learnt he claimed she was worse and he suddenly wanted her to be taken to the nursing facility and as fast as we could. She has now been put in a nursing home and my father in law is in a new relationship. My mil is 65 and he is 64 they have been married 40 years and he once told us nothing was happening between him and the woman he is now seeing. I’m really angry because he has given up friendship of 30 odd years, church and being church warden to be in a relationship. He is moving in with this woman and now giving away my mil cloths. I don’t know why I’m really upset but he is not the only one who lost someone. His kids have lost their mum and my baby a grandma not to also mention me who have lost a relationship with my mother in law.

    I’m sorry to whine but may the good lord bless and keep you and your family ijn

  32. My husband starred showing signs of dementia at age 63…only I thought he was loosing his self esteem. Consequently in 2008 we had to file for bankruptcy and lost our home his business and about a five million dollar net worth . From that I thought he he'd post traumatic syndrome and we went to the mayo clinic for 8 days. They sent us to Vanderbilt, and Dr Claassen did a pet scan and it showed my husbands brain atrophy. He had the Big. A. All the signs were there. The Dr. Took be on a walk down memory lane back to 2007. I have gained so much from having to deal with this diagnosis. I have gained my Lord through this disease. God has given me so much strength. My husband and I were sitting and doing a child's jigsaw puzzle . I was begrudging having to deal with this disease, but I stopped myself,said a prayer and I told God I would not bemoan anymore and would he please help us both to be happy and help me make it thru this as the sole caretaker. A friend gave me the book Jesus Calling. It's a daily devotional. Don't walk but RUN and buy this for yourself. It will change your life.

  33. My wife and I learned of my diagnosis two months ago. As soon as our wonderful Dr. gave us the news, my wife & I did something we have seldom done in public—– we kissed & held hands. No words were necessary, no tears, just an unspoken oath—- at that moment we knew that in some way,shape or form we''d continue to count our blessings,learn every-thing we possibly can about "AL", our new acquaintence and continue to count our blessings that we are so fortunate to have with our family. For whatever reason, it has become important for us to personalize this latest chapter in our life—–.

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