Early Onset Dementia

ctunesdj · ‎09-13-2015

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.

CelticFire · ‎11-01-2018

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.

agoyer · ‎11-02-2018

@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

tlmnelson27 · ‎04-10-2016

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.

md86255149 · ‎08-25-2016

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

Mike

Jlincoln008 · ‎08-30-2016

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

Jane

tlmnelson27 · ‎04-08-2016

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

tlmnelson27 · ‎04-02-2016

How are you doing, Grace?

ds15216474 · ‎04-07-2016

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

Jlincoln008 · ‎04-10-2016

@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.

hercules222 · ‎02-24-2016

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

Jlincoln008 · ‎03-06-2016

@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

tlmnelson27 · ‎01-14-2016

Michelle, please feel free to contact me at any time. We CAN support each other in this. I kind of gather from your comments that my husband is a lot further on down the road than your husband. I understand how every change can cause a new wave of tears and grief, because the same thing happens to me. Although over time, the more you go through, the more you go, "well, That's new!" Or "Oh, I guess we're gonna have to find a better way to do that." Not that it hurts any less or that your sorrow is diminished in any way, but I can promise you that not every little thing will affect you like it is now. I mean to say, the shock value of another change you notice will somewhat diminish. Enjoy being able to do things with your husband now. Go to movies, concerts, restaurants, if you are able, while he is able, talk together as much as you can and make all his favorite foods! I can also promise you that there are many, many moments of joy, and those are what you hang onto. Is he home with a caretaker while you work? (Are you on facebook, by chance?). I look forward to chatting with you again! Hugs, love and blessings to you, Michelle!

tlmnelson27 · ‎01-09-2016

Oh, ctunesdj! Your entire post could have been written by me. Your story and your emotions, the sadness of not being able to talk to your husband and having to make all the decisions by yourself, your grief about being robbed of your future, the lonliness--yes, I am in your same position! I m so very sorry for you and your husband. I don't think there is anything quite so hard as being young and energetic with a busy life together with one's husband and having a dementia diagnosis completely derail your existence. I think there's nothing heartbreaking than watching your husband drift away, and I am so sorry you have to go through this. You aren't alone. I'm 55 and my husband and I were having a blast together when he began to forget things. I was in denial for a long time because he'd always been my big strong rock until odd behaviors became blatant that there was something really wrong. I do a lot of crying. Sometimes he notices and sometimes he doesn't. Don't feel bad if you cry as well. We are is Supergirl and Wonder Woman rolled into one in this daily struggle, and even they get tI red and show weakness once in a while. I just allow myself an ocassional meltdown, pull myself together and get on with it. I also have a good therapist and an excellent, gifted hypnotherapist who is a friend of mine, helping me to deal with grief, anger, loneliness and sadness I'm feeling. I'd love to hear from you. You are NOT alone in this. There is still a bond between you and your husband. The love doesn't go away. Even when he can no longer remember your name or that you are his wife, he will still feel and know that YOU are HIS person!! Hang in there! I know you are doing a wonderful job with your husband, even if you don't feel like you are! Best wishes, my dear. Stay strong! Tina

ctunesdj · ‎01-13-2016

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

Jlincoln008 · ‎09-13-2015

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

ctunesdj · ‎09-13-2015

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.

Jlincoln008 · ‎09-17-2015

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

gatorgorilla · ‎09-13-2015

@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