AARP Eye Center
- AARP Online Community
- Games
- Games Talk
- SongTheme
- Games Tips
- Leave a Game Tip
- Ask for a Game Tip
- AARP Rewards
- AARP Rewards Connect
- Earn Activities
- Redemption
- AARP Rewards Tips
- Ask for a Rewards Tip
- Leave a Rewards Tip
- Caregiving
- Caregiving
- Grief & Loss
- Caregiving Tips
- Ask for a Caregiving Tip
- Leave a Caregiving Tip
- AARP Help
- Membership
- Benefits & Discounts
- General Help
- Entertainment Forums
- Rock N' Roll
- Let's Play Bingo!
- Leisure & Lifestyle
- Health Forums
- Brain Health
- Conditions & Treatments
- Healthy Living
- Medicare & Insurance
- Health Tips
- Ask for a Health Tip
- Leave a Health Tip
- Home & Family Forums
- Friends & Family
- Introduce Yourself
- Housing
- Late Life Divorce
- Our Front Porch
- Money Forums
- Budget & Savings
- Scams & Fraud
- Retirement Forum
- Retirement
- Social Security
- Technology Forums
- Computer Questions & Tips
- About Our Community
- Travel Forums
- Destinations
- Work & Jobs
- Work & Jobs
- AARP Online Community
- Caregiving
- Caregiving
- Re: Early Onset Dementia
Early Onset Dementia
- Subscribe to RSS Feed
- Mark Topic as New
- Mark Topic as Read
- Float this Topic for Current User
- Bookmark
- Subscribe
- Printer Friendly Page
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
Early Onset Dementia
My husband of almost 40 years was diagnosed with early onset dementia. He is on disability but still able to do many things including driving. For now... but after living with a grandmother with the disease and living through his mother losing her battle with it, I know what is to come. We are only 59 years old and I am devastated by the loss of our future together. I am still working full time and terrified of the day when he will need a companion or full care. We've been together since our teenage years and have no children. The loneliness of not being able to talk about everyday things and have him fully participate, the quiet still of knowing that all important decisions are now mine alone, the frustration of seeing him struggle to express his thoughts and forget to do simple things that he always did with ease is sometimes more than I handle. It's like grieving every single day and it never goes away. I try to accept each day as it comes and be grateful for the good ones, but even they are not good when compared to our life together just a few short years ago. Every day is uncertain. I have a few very close friends that give me their hearts and let me unburden mine, but they all have lives to live and have their own challenges to face. No one can walk this walk for me and it is a very lonely place. I feel like there is no hope for a brighter future for us or for me. I am angry that this is happening to us at such a young age. I pray daily for treatment and a cure. We are doing everything possible to keep this monster at bay, but little by little it slips further onto shore.
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
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.
@CelticFire 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
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
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
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
@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.
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
@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
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
Tina,
Thank you for your post and sorry it has taken so long for me to respond. Today was a particularly rough day. My husband still is able to do many things but each day I notice more and more things that either don't make sense or that he got confused about. You are right we are definitely sisters in this. You nailed it completely and I'm finding that only people in this situation truly get it. I was seeing a therapist but new year brings new deductible and it's too expensive. I cry all the time especially at night when he is sleeping.every tiny little change in Him only breaks another piece of my heart. I'd give my life in exchange for a cure for everyone afflicted if that would fix this, but it won't. Every day I'm scared to come home from work not knowing what I'm walking into. So far he's been ok alone during the day but I know that will change.
Truly I do feel alone in this. It means so much to chat with you. I wish I could give you a hug for your pain and for encouraging me at the same time. We will be married 40 years next month and my heart breaks when I think of us then and now.
Blessings to you my dear sister in this fight. May God shine his light upon you and your husband.
I would love to keep in touch with you. Maybe we can support each other through this.
Blessings, Michele
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
ctunesdj wrote:
My husband of almost 40 years was diagnosed with early onset dementia. He is on disability but still able to do many things including driving.
/////////
Hi ctunesdj. Figure out if you can locate your husband using his cell phone, or stick a gps locater in the car somewhere in case he gets lost.
"For now... but after living with a grandmother with the disease and living through his mother losing her battle with it, I know what is to come. We are only 59 years old and I am devastated by the loss of our future together. I am still working full time and terrified of the day when he will need a companion or full care."
////////
So you know what you're up against. You are very young. (I'm 56, so you're scary young!) I'm so sorry this is happening to you, and of course you are grieving the loss of your lifetime companion/husband/friend/lover. You will keep grieving this loss.
So: you're working full time. Some work places have elder care social workers (not many but you could be lucky!) Most that aren't teensy tiny places have Employee Assistance Programs with free counseling. this news is HUGE. Why not talk over what's going on? If you could afford it (and you're worth taking care of. Put the oxygen mask on YOU first, right?) perhaps weekly supportive counseling and therapy will help you cope. There's also support groups, both online and in person.
As for paying for his care, there's lots of things you can do to make a life that does not sink you or him. Do you have long term care insurance? Do you have savings? You don't have to figure this all out now, but the agency on aging in your area can guide you for free: www.eldercare.gov and type in your zip code.
'We've been together since our teenage years and have no children. The loneliness of not being able to talk about everyday things and have him fully participate, the quiet still of knowing that all important decisions are now mine alone, the frustration of seeing him struggle to express his thoughts and forget to do simple things that he always did with ease is sometimes more than I handle. It's like grieving every single day and it never goes away. I try to accept each day as it comes and be grateful for the good ones, but even they are not good when compared to our life together just a few short years ago. Every day is uncertain. I have a few very close friends that give me their hearts and let me unburden mine, but they all have lives to live and have their own challenges to face. No one can walk this walk for me and it is a very lonely place. I feel like there is no hope for a brighter future for us or for me. I am angry that this is happening to us at such a young age. I pray daily for treatment and a cure. We are doing everything possible to keep this monster at bay, but little by little it slips further onto shore.
/////
You do write eloquently and it's heartwrenching to hear your loss through your words. I'm so glad you have friends. Do you have a faith community? Other worlds you move in? You'll need to 'diversify your social network': that is to say, to expand your friendship circle, and find out how to survive this without becoming more isolated, and potentially, depressed and self-neglectful.
Tell us what challenges are facing you right now?
Have you found a caregivers support group? You found us! Yay! You are not alone.
What comes to mind? What can we talk over with you, here?
Jane
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
Jane,
Thank you for your sweet caring. I've tried a telephone support group thru Alz.org. I find it hard to participate in the calls during my workday even if I make it my lunch break. There are no caregiver support meetings in my area that work with my schedule and I try to be home every evening.
I constantly battle fear vs faith. We've recently reconnected with our church which is very large. We don't belong to a small community group. Between work and home responsibilities I don't have much left.
I miss doing things with my husband like we used to. I miss being able to go on a girls weekend getaway. I miss having hope for good things to come more than anything else. I live in constant fear that something will happen to me and then who would take care of my husband? I workout and try to eat well but the sadness is a stressor that I just can't seem to overcome. Everyday I'm grateful to haven't gotten through another day and t g e worst hasn't even happened yet.
For years we would help with my mother-in-law whom I loved like a mother. I did her nails for her every week even when she had no idea I was there. Now seeing her son following in her footsteps is beyond unfair and heartbreaking. The weight is a heavy burden.
I appreciate your post. Thank you.
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
So glad to hear you've recently reconnected with church. Use this place as a place for support, spiritual nourishment, and also practical support.
How heartbreakingly lovely that you did her nails even when she didn't know you were there. Wow. What a loving act.
Keep sharing. You know the ol' Shakespeare line:
"Give sorrow words. Otherwise it knits up in the heart and bids it break."
Paraphrased but you get the drift.
Jane
- Mark as New
- Bookmark
- Subscribe
- Mute
- Subscribe to RSS Feed
- Permalink
- Report
@ctunesdj wrote:My husband of almost 40 years was diagnosed with early onset dementia. He is on disability but still able to do many things including driving. For now... but after living with a grandmother with the disease and living through his mother losing her battle with it, I know what is to come. We are only 59 years old and I am devastated by the loss of our future together. I am still working full time and terrified of the day when he will need a companion or full care. We've been together since our teenage years and have no children. The loneliness of not being able to talk about everyday things and have him fully participate, the quiet still of knowing that all important decisions are now mine alone, the frustration of seeing him struggle to express his thoughts and forget to do simple things that he always did with ease is sometimes more than I handle. It's like grieving every single day and it never goes away. I try to accept each day as it comes and be grateful for the good ones, but even they are not good when compared to our life together just a few short years ago. Every day is uncertain. I have a few very close friends that give me their hearts and let me unburden mine, but they all have lives to live and have their own challenges to face. No one can walk this walk for me and it is a very lonely place. I feel like there is no hope for a brighter future for us or for me. I am angry that this is happening to us at such a young age. I pray daily for treatment and a cure. We are doing everything possible to keep this monster at bay, but little by little it slips further onto shore.
@ctunesdj - I see that this is your first post at AARP Online Community - we welcome your participation.
Just wanted to say that I have read your post & am moved by it. I admire your clear & concise writing about your situation. I can personally relate to some of your situation but not the overall reality you are facing.
My heart goes out to you & your husband. I read your post with care & concern, as others here at AARP will undoubtedly do. Am glad you felt able to share at this site & hope you feel it has helped you to do so.
Don't know that you want or need to hear this at this time, but I want to reiterate how impressed I am by the clarity of your writing. gatorgorilla/Pam
"I downloaded AARP Perks to assist in staying connected and never missing out on a discount!" -LeeshaD341679