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Re: Early Onset Dementia

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@irishfire I'm so sorry to hear of your frustrations and your husband's challenges. I can imagine how frustrated you must feel. I'm so glad you reached out!

 

There are many issues that can cause cognitive decline and memory problems. Medication side effects or interactions, sleep disorder (for example, sleep apnea), thyroid disorder, tumors and of course dementia and much more. Dementia is the overall umbrella for certain cognitive changes, and Alzheimer's is one disease under that umbrella, Lewey Body dementia is another, and there are others. 

 

You are right on that it's important to get a thorough evaluation and an accurate diagnosis so if there is treatment (or cure in some cases) that can help, your husband can get started as early as possible. It may be a process of elimination.

 

I'm wondering if your husband has been to see a neurologist? A thorough evaluation should include bloodwork (it sounds like you've already had that done but have they looked at thyroid, drug interactions etc.?). A sleep study might be important, as well as brain scans. It's important that you keep a journal of the incidents and behaviors that are causing concern. If you are able to track it, you may have more clear information for doctors to consider and take things seriously.

 

If your husband is now saying he's noticing differences too, would he be willing to go to a neurologist for a thorough evaluation with a neurologist?

 

Your husband is so lucky to have you! Keep at it but perhpas try a different approach with the journal and a specialist. 

 

Please let me know if you have any further specific questions or any other way I can help! 

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

 

 

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Re: Early Onset Dementia

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Hi, sorry to be resurrecting an "old" thread, but how do you get doctors, medical professionals, even family, to listen to your concerns when you're the one who sees the changes in mental capacity from day to day, week to week?  My husband is in his 40s but I've been seeing this decline for a while. I've tried to get him help before, he recognizes it sometimes, and other times he dismisses it as stress. Medical people have done memory tests, and they noticed that when he struggles, he looks to me for support. So they joke about that and move on. \ Because he's "only in his 40s" and his numbers (blood tests) are all fine, they dismiss everything as "his job"  "stress"  "get more exercise"  "improve your diet" and send him on his way. It would take too long a post to explain what has been going on, and how it has worsened over the years. But even he is noticing, and it takes a lot for him to admit that anything is wrong, ever. How did you get a diagnosis, or for anyone to help you?  My apologies for sounding like I'm whining (not my intention), but I am frustrated. He always says I know him better than he knows himself (and better than anyone else knows him) -- except no one listens to me until it's too late. Thanks in advance, and sorry for the long post. 

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Re: Early Onset Dementia

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Thank you for writing and sharing your story, Mike. We are stronger together.

 

Jane

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Re: Early Onset Dementia

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Thank you for the book suggestion. I will find the book and read it.

 

Mike

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Re: Early Onset Dementia

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I read the 36 Hour Day, a gift from a friend. It's like the Bible for caregivers. At first, I thought, well, this doesn't look like it applies to me, but as his disease progressed, the book became invaluable. I recommend it as well.
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Re: Early Onset Dementia

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@ds15216474 wrote:

You have all described our situation and the tremendous loneliness I feel. My husband was diagnosed at 47. He is now 49. It is rapidly progressing. I have left my job to be a full time caregiver. Downsized our home in November and I am beginning to question how long I can sustain this. My husband no longer remembers our history or that I am his wife. We have had to discuss as a family how to keep everyone safe through his periods of delusion. We live in an area that does not have a support group...it is hard not having others to connect with who understand this experience.

Denise


Have you read "The 36 Hour Day"? It's about caring for someone with dementia. Might give you some ideas on what to do. And how to cope. How to feel less alone.

 

He is so young! And no doubt so are you. Have you talked to an eldercare attorney? Not that either of you are elderly... but you need advice on how to care for him without going bankrupt. Google 'eldercare law' and your town or county and you'll find someone, or call the state bar association and ask.

 

 

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Re: Early Onset Dementia

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You have me Denise! I left my job to become a full time caregiver as well. According to everything I've read, that's common. There have been lots of times when I questioned how long I could go on. I cry a lot. We've been dealing with this going on 6 years now. I really don't have any support system. No kids, his are estranged, Mom can't help she's 81. No relatives. It's a real bummer. Everyone is different, so if your husband becomes violent, you may have to think about putting him in a facility for everyone's safety, as well as his own. DO NOT feel guilty. Here's a weird tip, for what it's worth. At the chiropractor's recommendation, I stopped giving my husband anything with artifical sweeteners and pretty much cut out the processed foods and the aggression almost completely stopped! It also helps to have a good therapist for you, so you can hold on to your own sanity. I also have a wonderful friend who is a hypnotherapist. Make sure you take care of yourself. Please feel free to contact me! I'm here to listen and offer virtual hugs and support! Tina
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Re: Early Onset Dementia

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You have all described our situation and the tremendous loneliness I feel. My husband was diagnosed at 47. He is now 49. It is rapidly progressing. I have left my job to be a full time caregiver. Downsized our home in November and I am beginning to question how long I can sustain this. My husband no longer remembers our history or that I am his wife. We have had to discuss as a family how to keep everyone safe through his periods of delusion. We live in an area that does not have a support group...it is hard not having others to connect with who understand this experience.

Denise

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Re: Early Onset Dementia

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How are you doing, Grace?
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Re: Early Onset Dementia

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@hercules222 wrote:
This is my first entry on this site. I feel like you read my mind. So well written. Yes we travel this road alone. I have children but I try to shield them from my problems. And not to burden my friends. That is why these sites are so important. Maybe your alz site can give you a local chapter to go to. Keep writing. Grace

Hi Grace,

 

Do you feel burdened when your kids ask for your help or advice? Do you feel burdened when your friends need a sympathetic ear? Maybe you're isolating yourself unnecessarily. It takes a village to care for an aging, fragile, elder. Reach out, beyond this group. Think about it anyway?

 

Jane

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