Tell Me Your Secrets

 

Jim and I at a Walk to End Alzheimer's Event in Oct. 2012

Jim and I at a Walk to End Alzheimer’s Event in Oct. 2012

There is an element of becoming part of the Alzheimer’s family that no one really seems to talk about. Specifically Younger Onset Alzheimer’s.

When and How to tell people.

You might think it would be a no brainer (no pun intended) but it is complex and tricky and a lot to wrestle with while figuring out what is happening to your family.

As we were patiently waiting for test result after test result to come back, we were unsure what the final outcome would be; stroke, high blood pressure, syphilis, depression, tumor. There were a lot of ailments that could cause the symptoms Jim was experiencing. Each test that came back negative, put us one step closer to a conclusion of Younger Onset Alzheimer’s.  You are just waiting to find out what is wrong and what the game plan will be. In the meantime, you are needing to talk to someone. There is this human desire to share.
Jim had specifically asked me not to discuss his ongoing medical dilemma with anyone. For me, that was extremely difficult. Not only am I a chatterbox, but I am a sharer as well. Trying to not discuss what was happening for over 2 years was a very, very difficult test of self control. I failed. Miserably. I talked to my parents and some close, trusted friends.

At what point do you tell a close friend? At what point do you tell a neighbor you see in passing? When do you need to include teachers, co-workers, casual acquaintances, coaches, old friends you only stay in touch with a couple of times a year, relatives, distant relatives, babysitters….. EVERYONE you deal with on a daily, weekly or monthly basis becomes a question of  when should we tell them? How should we tell them? Why tell them now if you don’t really know what it is? Why tell them if it is going to be a process that will encompass years of our lives?

The ongoing saga of trying to understand and comprehend what is happening becomes eclipsed at times with do they know? Should we tell them? Why do we need to tell them?

You don’t want to seem like a person that is just looking for sympathy or attention. I never like telling anyone in front of the kids. A person’s natural reaction is so raw and emotional and heartfelt. It is a source of comfort, but it is also something you don’t want your children to see time and time again. I can’t tell you how many people we have told and they look at us and say, “but he is so young and doesn’t look like anything is wrong.” or the best reaction, “I am so sorry. You have got such a long and awful road ahead of you. I don’t envy you and I am sorry it is happening to you.” What do you say to that?

After a while, it can, at times, seem like it is too late to tell someone. How do you come back to a co-worker,  friend or relative and tell them something you have been dealing with for years and try to explain why you didn’t tell them sooner? How do you reach out to a neighbor you see everyday in the front lawn and broach the subject? What words do you use to inform someone that you only see in front of your young children?

It is, most times, a completely awkward jumble of jargon.

I finally realized after discussing this with a good friend. I was really having a hard time wrapping my mind around Jim’s diagnosis, how to tell the kids, how to deal with what was coming and I was talking to her about figuring out what to say to people and if I should.

She very quickly replied to me, “of course your friends and neighbors want to know. They care deeply about you and Jim and your kids. They want to help. They will be upset too, just like you would be upset if this was happening to me.”

BAMMM. There it was. Of course I would want to know if the shoe was on the other foot. Of course I would be sad and upset and want to do something to help. Even if it was going to be a long haul. I just hadn’t realized while wallowing in my own sorrow and self-absorption that learning of our plight would affect those around us deeply. This made me much more aware of the feelings of our loved ones.  It gave me strength and courage to start talking more openly about what was going on.

Once Jim lost his job, we sat and had a long talk. We decided to move forward with coming out publicly with Jim’s malady. We agreed trying to raise awareness and bring attention to Younger Onset Alzheimer’s Disease was important for our family. It was important for our kids to know we cared enough about them to help bring change to all facets of this horrible disease. What a freeing decision and what a difference that has made. It had really been weighing heavily on me to keep it all quiet and inside. At this point, there were only a handful of friends and close family members that knew. It was a secret that was torturous to keep. Our story became everyone’s story. We know that we are making a difference. We know that there are many others that are going through these same struggles.  We speak for them.

There are still times that someone hasn’t heard or doesn’t know. It is sticky to try to tell them in front of Jim. If I can, I try to let people know without him there. It seems more dignified. That is just it; Do people with cancer or heart attacks or strokes have to bring it up separately?  Why does there seem to be so much stigma?

Is it because there isn’t a cure? Is it because the outcome is the same for every person that has it? Is it because it isn’t a physical disease, but a mental one? Is it because it is such a long, drawn out disease? Why can someone proudly wear a shirt that says “Breast Cancer Survivor” but you wouldn’t be caught in a shirt that says “Afflicted with Alzheimer’s”? Believe me, there are times when we are out that I think one of those shirts would work very well.

It takes its toll on us. But I have come to realize that it also takes its toll on our family, our close friends and all of those that have loved us through the years. They share this journey and feel heartache too.

Not that long ago, I was discussing our situation with a pretty good friend. A very smart guy. He was just so confused and frustrated.

“I just spoke with Jim the other day and he seemed fine.”

“Yes, you are right. There are lots of times he seems ok, but his short term memory is very bad.”

“Are you sure the doctor got it right? Are you sure that he doesn’t have something else?”

I didn’t realize it during our conversation. I took it as an insult; like I was making up things that were wrong with Jim. But as I write this very blog it has whacked my heart. I know. I know now that this intelligent man was groping for hope, just as I have been for the past 4 years. He is a friend that cares and doesn’t want to see Jim succumb to what has been promised to us.

Don’t keep it inside. Share your feelings and let others know they aren’t alone and that you care too. It helps so much.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (16)

16 Responses to “Tell Me Your Secrets”

  1. Lauren Flake says:

    This really touched my heart. My mom is in the advanced stages of early-onset Alzheimer’s disease (on hospice care in a nursing home), and I remember struggling when she and I would run into an old friend, and I didn’t want to tell them in front of her so they were just baffled by her strange behavior. I completely understand how the “Afflicted with Alzheimer’s” shirt would have been helpful. Hang in there. You and Jim will be in my prayers.

  2. Liz says:

    My father has early onset also, his diagnosis came when I was only 22, and having to put my dad in the nursing home was the hardest thing we ever had to do and it was definitely something hard to talk about especially for my younger brother and sister, but after coming to terms with it, I feel the best thing to do IS to talk about it when it comes up… advocacy and awareness are the best things we can do after the diagnosis!
    Thank you for writing this article, it definitely touched my heart! Keep your head up!

  3. Gina says:

    Thank you so much for sharing this! I’m going to pass on to my mom. My dad has early onset ALZ, as well. It definitely carries a stigma and can be difficult to talk about. Again, thank you for sharing your story! I hope it provides some hope and therapy for you, too!!

  4. So nice to find your blog! We are a kindred spirit, I can relate to so much of what you have written….and I mean SO MUCH!! Sounds much like our story! My hubs is 49 and was diagnosed almost 3 years ago with Younger Onset Alz……it is a wretched disease as it slowly steals away our husbands at such a young age! We are also a very sports minded family, my kids are just a bit older than yours. Are you on facebook?? You have my email, I would love to hear from you….it’s so hard to find others at this age that I can relate to!!! Thanks for sharing your heart!

  5. Anne says:

    Thank you for your story. Although my husband’s Alzheimer’s wasn’t early onset, it is nevertheless heartbreaking to watch him deteriorate. He is now in the 9th year of his journey. He doesn’t know my name or that I am his wife. Oh, how I miss our long talks and quiet moments. Alzheimer’s is a thef.

  6. Lee Ann says:

    I enjoy reading your blog. I am a long term care nurse, retired, that has spent the last 20 years in special units. One guy I knew was caring for his Mother and didn’t tell anyone in front of her. Once he was over at my house with his Mom, and he lost his phone. So she wanted to help, so she would go back into the house and get what she thought was the phone. She brought an electric razor, “is this the phone?” She brought a toothbrush. It was very sad, but very telling. She wanted to help so much. And we didn’t have the heart to tell her no, that wasn’t it. Thanks for sharing with us.

  7. Mary says:

    Thank you so much for sharing your story. My my husband was diagnosed 12-2012 with early onset Alzheimer’s Disease and I feel so many of the same things you do. We are slowly losing our husbands but so treasure the time we have left. We need to keep the prayers going for each other. Thanks again, Mary

  8. Sherri says:

    My mother has Alzheimer’s and dementia. She is not young ,78 years old. It is so heartbreaking, I cannot imagine a younger person having to deal with this monster disease. Enjoy each day and God bless you both

  9. Coletta says:

    Karen, your words are needed by others facing Early Onset. My husband was diagnosed with Early Onset Alzheimer’s in June 2003 at the age of 48. He was able to see his first three grandchildren and enjoyed them so much. He died Nov. 22, 2006 and we all miss him dearly. I now have 8 grandchildren who will learn about “papa” from pictures and stories. Enjoy the time you have together and keep telling your story!! I will keep you in prayers.

  10. Connie Howard says:

    My husband was diagnosed in 2008 at the age of 51. Five years later I have just started taking him to a “adult day care” 2-3 times a week. He really can’t be left alone so I am working on in home help as well and the finances to do that. He talks to himself constantly and is getting more agitated. He knows who people are but can not execute tasks. He can’t do puzzles, read very much although he plays some tennis and the piano but is slowly losing the ability to do those. He needs help showering, food has to be prepared for him. My daughter said she didn’t think I love her dad anymore. I told her I was grieving the loss of my husband. She said he is still your husband. I told her we don’t communicate with each other or have that type of relationship. I am his caregiver. She said when you got married and said your vows it was as husband and wife not as a caregiver. I realize she can’t understand the loss I feel. The unknown future can be frightening so we live each day thankful for what God brings to us and depend on Him to face the challenges. Thanks for sharing your blog. Have not found many others in our situation.

  11. Connie Howard says:

    I am on facebook- Connie Simmons Howard. I use it to keep in touch with people and enjoy the encouraging posts.

  12. Dennis DuBois says:

    Karen, I feel your pain.Most people that are personally involved with the care of an individual with Alzheimer’s are dealing with thier parents. Even they don’t and can’t undertsand what it’s like when it’s your spouse! My wife was diagnosed with Early Onset Alzheimer’s at the age of 56. That was over 9 years ago. I took care of her for the first 7 years. As the disease progressed I had to seek help. First it was Adult Daycare, then Assisted Living, and last November, had to move her to a Skilled Nursing Facility. Each one of those decisions was, at the time, the hardest thing I’ve ever had to do. Family and friends do not understand. They cannot possibly understand. Unless you’ve been down this path, you have no idea of what it’s like. The best thing you, and everyone else that is in this situation, can do for youself is find a support group. I was in one for 5 years. What you get out of it is the ability to share your feelings and frustrations with others who know exactly, what you’re going through. They have been there! As time passes, you become the one who “has been there” and can share your experience with someone just starting. It took almost two years of our daughter’s prodding to get me to give in and attend a meeting. I thought I was strong enough and didn’t need help. I was wrong. I wish I had gone sooner! Please consider it, for yourself!

  13. Dolores says:

    I just happened upon your blog through another blogger.
    My husband was in his 60’s when he was diagnosed with Alzheimer’s and he died almost 7 months ago.
    My heart cries for you and your family going through this at such a young age.
    I pray every day for a cure for this incredibly cruel disease.
    Blogging was my drug of choice as I walked through the years with Alzheimer’s. Posting pictures and writing and hearing from wonderful people lifted me up and helped me so much!!!
    I can look back now and it’s my diary of our life during that time.
    Please know you and your family will be in my prayers.

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