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Children of parents with Early onset/ other dementia
KSkelly430
Posted: Tuesday, August 20, 2013 12:46 AM
Joined: 12/3/2012
Posts: 4


Hi! My name is Katie, I am a 22 year old primary caregiver for my 50 year old mother. I was looking around to see if there was anyone else in a similar situation between 15-30 taking care of a parent. I am looking for peers to connect with; I started going to a local community center to reach out but it seems that I may be the only one looking for more of a therapeutic support group rather then a social hour. If anyone our there is looking to form a new connection and to go through the process with some outside opinions I would embrace it with open arms. looking to start something new for myself and to grow as a individual.
Iris L.
Posted: Tuesday, August 20, 2013 1:38 AM
Joined: 12/15/2011
Posts: 16102


I was going to point you to an old thread with a recent post, but that post was yours!

I suggest that you post your request on the "General Caregiver's" board, as a new thread.  There are several younger caregivers. 

Don't discount the advice from those older than you--they have been there, done that, and may have a tee shirt to give you.  Learn all you can from whomever you can.

Iris L.


Myriam
Posted: Tuesday, August 20, 2013 7:09 PM
Joined: 12/6/2011
Posts: 3326


Hi, Katie.  This morning, I was in a support group meeting for those of us in the early stage.  Present was a 54 year old woman who has a 16 year old and I believe a 20 year old living at home.  In what state do you live? 

  

I don't know how difficult it will be for you to connect with them, but I suggest you call the 800 number (800-272-3900).  My chapter is at www.alzwa.org. Tell them what you're trying to do and that you understand there is someone in the early stage support group who has a teen living at home. 


 

Better yet, if you haven't already done so, contact the chapter in your state, or neighboring states, to see if there are families with teens and 20's at home who might be interested in an in person or online support group. Go here to find the chapter in your state:  http://www.alz.org/apps/findus.asp 


KSkelly430
Posted: Wednesday, August 21, 2013 9:47 PM
Joined: 12/3/2012
Posts: 4


Thank you for the advice. I have spoken to people my moms age who have been going through the a similar situation as me and often find it hard to relate totally to them. I will try and use the general caregivers board.


KSkelly430
Posted: Wednesday, August 21, 2013 9:57 PM
Joined: 12/3/2012
Posts: 4


I live in NY and have met one group of individuals who are my age. I have been apart of the group for the past six months, and feel that I am not getting much benefit from it.The other group members are uncomfortable talking about the same concerns that I have and the group has taken a turn towards fundraising. The group I am currently in is not run by the alzheimer's association and didn't think to ask my local chapter see if they might even be interested in starting another group at a different location but i will look into it.
Lonna
Posted: Thursday, August 22, 2013 8:59 AM
Joined: 5/12/2013
Posts: 75


Katie, I am 34 and the primary carer for my 61 year old mom! I would love to connect. I know how it feels like we're the only ones going through this.
littlerabbit
Posted: Thursday, August 22, 2013 10:57 AM
Joined: 5/30/2013
Posts: 18


Hi Katie and Lonna,

I'm 33 and my mom is 66 with AD. I'd love to connect. It's not easy but we are not alone.


Lonna
Posted: Thursday, August 22, 2013 2:10 PM
Joined: 5/12/2013
Posts: 75


What stages are your mothers? Mine I think, is moderate. She lives alone and has no troubles taking care of herself (cooking, cleaning, bathing, toileting), but she can't organize her pills, she can barely write anymore. Memory is fine. Just the problem solving and attention span that's almost completely gone.
Lonna
Posted: Thursday, August 22, 2013 2:11 PM
Joined: 5/12/2013
Posts: 75


Also, I started a FB page for families experiencing younger onset. https://www.facebook.com/bethyshouse

I'd love to connect there. It's easier than this message board!


littlerabbit
Posted: Friday, August 23, 2013 10:28 AM
Joined: 5/30/2013
Posts: 18


HI Lonna,

My mom is moderate too. She can still do some things like laundry and play on the computer but her concentration is poor and can be childlike sometimes. I"ll definitely check out the FB page. 


Lonna
Posted: Friday, August 23, 2013 2:18 PM
Joined: 5/12/2013
Posts: 75


LittleRabbit, sounds familiar! The other night I took her to Bingo, and I was amazed that she understood what to do. I was expecting to have to play for her. This disease is so weird! Did your mom get a confirmed AD diagnosis, or did they just tell her she has dementia? They don't think my mom's case is AD, but in all reality, it's apples to apples in the later stages.
kdubs923
Posted: Monday, August 26, 2013 3:37 PM
Joined: 8/26/2013
Posts: 3


Hi Katie,

I've recently found this message board and finally decided to sign up after seeing your post. I'm about to turn 30 (and I'm currently 7 months pregnant) and starting to care for my 56 year old father. 


We're still in the beginning stages of this whole process, but my local chapter of the Alzheimers Association has been AMAZING. I've met with a representative once, she's called to check in on us a few times and has sent me correspondence about support groups/educational conferences/family events. I suggest exploring that option first. My local chapter has a support group specifically for Early Onset and their caregivers. Unfortunately, I haven't been able to attend personally as it meets mid-day during the work week, but your state may have something that works with your schedule.

 

Good luck!


Lonna
Posted: Monday, August 26, 2013 4:46 PM
Joined: 5/12/2013
Posts: 75


kdubs, I'm 34 and taking care of my 61-year-old mom. Really needing some support from others in the same situation. I'm making myself sick worried about her and worried that I'm going to end up like her. I really need someone to talk to. None of my friends know how to react, except "My nana had AD." It's not the same, is it? Our parents should be in the primes of their lives, and here we are helping them die, only to later get the disease ourselves. ... As you can see I'm just desperate to talk with others going through this.
Alilynne
Posted: Friday, August 30, 2013 11:17 AM
Joined: 11/30/2012
Posts: 11


Hi Katie, 

 I'm 23 and the primary caregiver of my mom who is 55 with EOAD. I also have my sister who is 18 who is helping until she goes to college. My dad passed away in 2007. I would love to connect! You could also connect with me on facebook /alihunter


jenvy
Posted: Friday, August 30, 2013 4:58 PM
Joined: 1/10/2013
Posts: 7


Hey Katie,

 

Connect with me! I'm in a similar situation. I'm also 22-years-old, primary caretaker of my 56-year-old mother. It's literally so hard, especially being so young and having such a huge responsibility. No one understands it! I read through your profile and it sounds like you've been through a lot. I don't have much help with my mom either because two of my sisters passed away several years ago, my parents are divorced, and my remaining sister lives over an hour away. I would love to connect with you and talk a bit.


Iris L.
Posted: Friday, August 30, 2013 5:41 PM
Joined: 12/15/2011
Posts: 16102


Welcome, young caregivers.  Even though your situations are so unusual compared to those your same age, you have much in common with caregivers of all ages.  Your caregiving challenges will vary according to the stage of your LO.  Please read the threads of the other caregivers, because they will have good information for you.  You can receive good support from someone older than yourselves.

Here is a link to good newcomer's information:
 http://www.alzconnected.org/discussion.aspx?tid=2147499781&g=posts&t=2147499795

 


TanyaJ
Posted: Saturday, August 31, 2013 11:36 PM
Joined: 8/30/2013
Posts: 1


Hello all,

I just joined this today and this is my first post.  My mom was dx with EOAD when she was 57 and she has had it for about 3 years now.  3 years ago she was a fully functional, independent mom and today she doesn't know who I am.  She stopped recognizing me about 2 years after dx.  She just has rapidly declined so fast and I must say she has taken my heart with her.  I'm only 32.  I'm a nurse in a hospital and the floor that I work on has a lot of Alz. patients so I have a lot of expiree with them on all levels.  Its really hard being nurse and daughter.  As far as her level of Alz, its severe, if you ask her if she's having any pain, she doesn't know what the word pain means.  As far as my stage of grief, I'm still sobbing, I just can't accept it.  I'm a nurse, I fix my patients but I just can't fix her and it kills me.  My mom was always my rock, she kept me going and I just want her back.  I don't have a support system, I'm a nurse so I usually am the support system.  I never reached out to join a support system because with my education and training I could run one but as a nurse not as a daughter.  I just don't know how to accept this dx.


Mimi S.
Posted: Sunday, September 1, 2013 10:00 AM
Joined: 11/29/2011
Posts: 7036


Welcome Tanya,

You say you can fix your patients and you take care of dementia patients. Yes,you can make them calmer and more content, but you know you cannot cure them. You can do the same with your mom.

 

There is a wonderful small book worth the purchase price: Creating Moments of Joy by Jolene Brackey. her philosophy is the most important part of the book.


Lonna
Posted: Monday, September 2, 2013 7:31 PM
Joined: 5/12/2013
Posts: 75


We need a cure, don't we?
Myriam
Posted: Monday, September 2, 2013 11:43 PM
Joined: 12/6/2011
Posts: 3326


Yup!!
crimson4gd
Posted: Wednesday, September 4, 2013 3:17 PM
Joined: 9/4/2013
Posts: 3


I am 38 and am my 69 year old mother's caregiver.  Kudos to those of you that are so young.  I go to school full time and work full time as a teacher plus I have a family to take care of.  I can't imagine being so young.  My prayers are with you because even I feel all alone in this journey and I have no clue what I'm doing.

 

 


Myriam
Posted: Thursday, September 5, 2013 1:52 AM
Joined: 12/6/2011
Posts: 3326


Welcome, crimson. I read your profile and it sounds like your mother suffers from anosognosia. Many persons with Alzheimers and other forms of dementia suffer from anosognosia. Here is information on it: 

 

http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf 


Lonna
Posted: Monday, September 9, 2013 8:54 AM
Joined: 5/12/2013
Posts: 75


Tanya, a good friend of mine, whose father died of EOAD at age 67, recommended throwing plates out a window, screaming "It's not fair!" and allowing yourself to be angry. Angry at the disease and what little research funding resources we have at our disposal. Angry at the way families hide behind the disease as if it is shameful. Angry at the "system" that can and will NOT do nearly enough to protect our families' health, dignity and financials. 

Crying, yes, there is a lot of that. I do know. But anger fuels change. We all have voices on this thread that can, should and will be heard. We must not hide behind the diagnosis. Be brave, Tanya and everyone. This is the shittiest disease to happen and always seems to happen to the best spirits on this earth.

Consider this my call to arms, everyone!

Let's: 

1) Throw some plates out the window. Get that out of our system.

2) Cry together.

3) Plan. Act. Be heard. Only then will we see the real change that will allow people like us in the very near future to have better treatment options so that if/when it happens to US, we are armed with drugs, resources and federal support for a disease that has destroyed too many of us already. 

Let's take our  grief, our anger and frustration, our fear, our utter exhaustion and our collective despair and turn it into a voice for our parents who suffer so that others will not have to bear the soul-crushing cross of EOAD.

Lonna


Myriam
Posted: Monday, September 9, 2013 2:19 PM
Joined: 12/6/2011
Posts: 3326


Hear! Hear! It's my life's passion to do just that. As a group, as Baby Boomers age, they will not hide, but will demand a cure!
Igirl9148
Posted: Monday, September 9, 2013 7:25 PM
Joined: 9/9/2013
Posts: 2


Hi Katie lonna and little rabbit, I am 33 and a secondary caregiver of my 54 year old mom. Would love to connect
DiznyDiana
Posted: Monday, September 9, 2013 8:50 PM
Joined: 8/25/2013
Posts: 11


I am so uplifted from all the responses to Kate and others. We live in NY.   My husband is in his early 50's with EOAD and my children are 19 and 14.  My older son is in College in Virginia and is very concerned for the well being of his father. However he does not have to put his life on hold.   I hope to get involved with our local support groups when time permits and introduce my sons as well.  I have come to beleive that we are all in this together.  Finding lots of support and useful information on the message boards.  I am using this board to listen and reach others and also have a twitter feed where I post good articles.  dznydiana.  Be well!
jmsstager
Posted: Tuesday, September 10, 2013 12:07 AM
Joined: 9/9/2013
Posts: 1


I just joined this site. My mother has been diagnosed for twelve years and is now 67. She remained at home with my father until last summer, when my husband and I moved her to a facility.

 

 We had been her primary caregivers in the summers because my father works abroad during the summer months. Initially, I thought that we were moving my mother to help my father, who had been drinking so heavily for more than a year that he was a danger to himself and to my mother. The move actually seems to have helped my mother as well; she speaks a bit more, seems calmer, and is enjoying the benefits of music therapy. We feel very lucky about the place that we found, which is a non-profit and a small wing within a larger retirement community and nursing facility.

 

 We have three young children and everyone at the nursing home seems thrilled to see them, especially the baby. My oldest son, who is 6.5, is the most aware of my mother's disease because of all of the summers that she lived with us and my middle child, who is 3.5, says that his grammie has a dying disease. My thoughts are with all of you young caregivers. The summers alone became very hard on my marriage and coping with the disease has also complicated my relationship with my father who is at turns grateful for and dismissive of our contribution.

 

I feel very sad to think that my mother sacrificed so much for her children and then just at the moment when we were newly adult and she could actually focus on enjoying her own life, she became sick. I try to remind myself of that as I make decisions in raising my own children. Thank you for listening and hugs to all of you coping with losing parts of your parents so young!

 

Jennifer


Lonna
Posted: Tuesday, September 10, 2013 11:49 AM
Joined: 5/12/2013
Posts: 75


Wouldn't it just be great if there was a special place for families like ours? Instead of the traditional Assisted Living scenario for older folks, there could be a place for young families to go for living assistance that promotes togetherness that is not focused on being a caregiver, but rather being a family. I think of my mom, who lives at home alone, and does not deserve to be alone, and how she would THRIVE if there were just such a place to be around others like her who are not 70 or 80, but rather living this disease in the primes of their lives. It would free up our worry as caregivers as well, knowing that our parents/spouses are with people who are going through the exact same journey at the exact same time in their lives. Then, we wouldn't be spending more time planning/caring/worrying; rather we'd have time to be a family and laugh and play and sing and dance. 

What would you all think about proposing legislation in our respective areas that would raise funding for family-centered assisted homes for EOADs? I think it could work. There are more of us out there than people think. EOAD isn't THAT RARE AT ALL! 

 


dmarc23
Posted: Tuesday, September 10, 2013 10:17 PM
Joined: 5/20/2013
Posts: 10


I'm 23 and a secondary caregiver. My mom is 57 and has early onset and is getting progressively worse. It's very hard to deal with and incredibly sad.
Mimi S.
Posted: Wednesday, September 11, 2013 10:01 AM
Joined: 11/29/2011
Posts: 7036


My two cents:

Lonna,

 

What a wonderful idea. Would you be willing to send your mom to a different area of the country if such a space was available?

The realities. There are few very good Assisted Living Facilities. Most families either prefer to keep the patient at home or do not have the ability to pay five grand or so a month for care.


Another reality. Yes there are a lot of Early Onset people: just look at the traffic on this website. However, compared to the population as a whole or compared to the dementia population as a whole, the numbers are low. Therefore it would probably be unrealistic to think such an arrangement just for younger people would be profitable.

I do know that the type of facility you want, with the activities and atmosphere you want is available, but it's not age restricted.

Yes, in early middle stage the patient is aware of the age difference. I think a well run program can possibly make this less of an obstacle.

Later, as the patient becomes more self-centered, the age difference will matter less.

Dmarc: We're so glad you found us. Do learn as much as you can about the disease. And please do try to find at least one joyful moment every day. Please do buy a copy of Jolene Brackey's, Creating Moments of Joy.  Let her philosophy become your mantra.


A.S.
Posted: Monday, September 16, 2013 7:59 PM
Joined: 9/16/2013
Posts: 1


Hi,

 

I'm 28 and am the primary caregiver for my father who is 59 and has a rare form of dementia, Cortico Basal Degeneration.  It is similar to AD in some ways, and I would say that the disease is already in the severe stage.  I would very much like to connect with other younger caregivers, as I feel that the challenges are unique, and I feel very very alone.  This is my first time on these forums, and I think they are national, but I'm not sure.  I live in LA - does anyone else live in the area?  I would love to connect. 


Karen W.
Posted: Monday, September 16, 2013 9:00 PM
Joined: 8/9/2013
Posts: 1


Hey younger people!

 

I'm 30, the youngest of three girls. My mom, who is now 69, was diagnosed last year. I guess my dad (who lives with her) and my middle sister (who lives around the corner from them) are considered primary caregivers.

 

We just had the Walk to End Alzheimer's in Madison, WI yesterday, and I felt very honored to be recognized as the "Advocate" this year. I live an hour from my mom and have a very busy schedule, so sometimes I feel guilty not being able to visit her multiple times a week like my sisters.  I have made sure to have a specific calling schedule, and have been spreading the word and educating younger generations all over Madison.

 

I have been attending support groups every month...and yes, I'm by far the youngest person there. I've talked to anyone who will listen about the disease. I'm sure my friends are getting sick of it, haha...but I don't care! It's in my genes - my maternal grandma had it, and now my mom does. Something HAS to be done!

 

The project that I put together to fundraise for the walk is something that I'm extremely proud of. I am a musician, so I decided to use music...I asked many local musicians to donate songs, and with the help of my sound engineer/producer friend, we put together a compilation album.  I also wrote a song specifically for the album with another friend, inspired by my mom.   All album sales benefit the Alzheimer's Association 100%

 

We are still selling them, even though the walk is over.  Here's a little promo music video that we made for our original song: http://www.youtube.com/watch?v=4jjEveYjwjg&feature=em-comment_received&lch=email&lcor=1&lc=rIjhzrO7_z2qE8EztbOhvbWCx6qy_DWgpThv7PAlrio

 

Not trying to "sell stuff" on here, but if anyone wanted to get the album and have the sales go back to the association, you can go here: http://www.nimbitmusic.com/karenwheelock

 

I would love to meet more people who are young and going through this...I think I've only met about 3 in the last year...and I've been out and about, meeting people left and right! You're right, not many people our age understands...and that's why I'm spreading the word. It's important!

 

Ok, I'm off my soapbox now. Feel free to connect if you'd like!



Lonna
Posted: Tuesday, September 17, 2013 9:09 AM
Joined: 5/12/2013
Posts: 75


Karen, the only way we're going to get more research funding for better treatments and a cure is to be on that soapbox as much as we can. I'm sure my friends are sick and tired of hearing me talk about early onset, but I don't care. The ones who stick around to listen are the true friends; the ones who turn their ears are the ignorant ones. Keep that in mind! Connect when you can. I felt so alone before I found these message boards, and now I'm more motivated than ever to be an activist for this disease that is taking our mothers away too soon, and I WILL NOT allow it to happen to us.
angelnc
Posted: Thursday, September 26, 2013 5:05 PM
Joined: 9/26/2013
Posts: 2


Hey Katie! My name is Angel. I'm a 24 year old mother of two toddlers and I have just recently found out my mother has severe dementia. My mother is only 46 years old. We have gone through several test the past few months. Right now the doctors are considering three possibilities for diagnosis. Posterior Cortical Atrophy, Frontotemporal Dementia, or Alzheimers. I'm my moms primary care giver plus I also have a 5 and 3 year old at home. The news is devastating because my mom is so young. Right now we are taking it one day at a time I'm also in need of someone to talk to who's going through the same thing.
Lonna
Posted: Saturday, September 28, 2013 11:22 AM
Joined: 5/12/2013
Posts: 75


lgirl, Kate, et al, I'd love to connect too, but this site is terrible! I can't message anyone privately because it doesn't give me the option to choose from my connections. Terrible! As I'm not super protective of my privacy, you can Facebook me at Lonna Whiting, Fargo, ND. At least there we know the technology will work in our favor!