It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board

  • My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 11-03-2010, 12:53 PM   #1
    Elf 1977
    Newbie
    (female)
     
    Join Date: Nov 2010
    Location: baton rouge, la
    Posts: 5
    Elf 1977 HB User
    My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Hello all... new to the forum. I am a 30 yr old with a diagnosed mother.....

    My mother was diagnosed with EOAD a few years ago at 58/59 or so. I'd say she's probably around Stage 4 or 5... she actually shows signs of both 4 and 6, but probably overall she is in Stage 5.

    We live in different states, and this has been very difficult on my Dad and I am an only child.

    Soon my family and I will be moving back to our home state to help my Dad with everything.

    My mom does not need full-time care at this point, but she's a lot to manage. It seems that with each 4-6 month period, the original person that she was slips away a bit more. It hurts very much because we were so close and we cannot communicate in the same way any more. Also it hurts to see someone who used to love books and reading and exercising, cooking and driving, to not be able to really do any of that any more.

    My mother particularly started off with language issues... she started forgetting words and how to pronounce things. At first we thought she might have Aphasia... but her memory and cognitive abilities are also declining... although her main issue seems to be language...

    for instance, instead of "bra" she might say "bray"... she stutters a lot and has forgotten how to say most words that are not in her usual rotation of vocabulary. She still knows who everyone is, espeically those in her close/immmediate family, but she has forgotten the names (but not faces) of old friends and extended family members.

    I know we are just beginning what is likely to be an increasingly painful journey, and I have come here to ask for your support.

    I may end up using this as a journal over the next while... we will see.

    I appreciate all of your stories and shared experiences - they have already helped me feel like I am not alone.

    My Dad has the patience of Job and he loves my mom so much - but he cannot do this alone anymore... I am an only child, so I feel like this is something I have to do.

    I am leaving a place and a dream job that I love to go back to a place I really don't like all that much, and a job that I will not like as much, but I realize it is the right thing to do and I do not and will not regret this important decision.

    I also want to be there with my Mom and create new memories and enjoy her presence while she is still somewhat who she used to be and still knows who I am.

    Thanks all...

    -Elf

     
    Sponsors Lightbulb
       
    Old 11-03-2010, 01:30 PM   #2
    debbie g
    Senior Veteran
    (female)
     
    Join Date: Oct 2006
    Location: highland park, il 60035
    Posts: 2,483
    debbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    my dad could not do it alone either. my brother and i tried to help out as much as we could. eventually after my mom had a fall at home she went to the hospital. they would not release her unless she went into a nursing home. she lived 8 months after that. dementia is a horrible disease. i wish you good luck and keep your mom home as long as you can. keep posting.

     
    Old 11-03-2010, 05:37 PM   #3
    Gabriel
    Senior Veteran
    (female)
     
    Join Date: Jul 2007
    Location: charlotte, nc, usa
    Posts: 7,235
    Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Welcome to the board Elf. I am sorry you are having to deal with this and needed to find us but glad you are here. Yes, it is a difficult journey that we all share with you.

    My Mom also has had speech difficulties. She has lost many of her words. Her auditory processing is very poor. When she tries to communicate she gets a few words out, then her thought process is disrupted by her visual processing. With the missing words and the wrong words... much of what she says is not understandable. When ask a question, a yes might mean not or maybe or yes.

    It is a devastating disease and sad to watch but you have to make the best of what you do have with her. Yes, you will make new memories as I have. My Mom can make me laugh or bring a smile to my face. I actually enjoy the time I spend with her now. You learn not to look back at what was or forward to what will but... just stay in the moment and find the best in that moment to take away with you.

    I am sure your Dad will need help. And once you get there so will you. It's a lot for two people to handle. Get any additional help you can. Senior centers, adult day care options, respite care, and in home caregivers are all options you should check out. It is very difficult to keep a loved one at home for the duration. Some do but most will eventually need full time care giving. Check out what is available before you need it. Know what your options are and where you want Mom to go if she needs too. We were thrown in a situation that we had to make a quick decision and I don't think that first decision was the best that could be made. The later decision was researched more thoroughly and it was a much better decision Just a little advice from my experiences

    I am sorry your are uprooting your life but ask you said... this is what we do!! You are a wonderful daughter to step up and help your father. Know that there is life after this is over and done. Hopefully you can go back to the life you love so much with the knowledge that you have done what you could for your parents.

    Again... welcome to our little corner I look forward to hearing your story and reading your experiences. Just know you are not alone in this journey because we are all on it with you.

    Love, deb

     
    Old 11-03-2010, 07:31 PM   #4
    meg1230
    Senior Veteran
    (female)
     
    Join Date: May 2008
    Location: Lake Worth, FLorida USA
    Posts: 1,676
    meg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB Usermeg1230 HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Yes, Elf, I'm glad you found us.

    I can tell you that, personally, I wouldn't be doing very well at all without the advice, concern and friendship that I got here and that I so desperately needed.

    This is a long, slow journey and I hope you can find some answers and some solace with us.

    I am sorry you have to uproot your life... but let me warn you ahead of time, there will be days that you resent it but there never will be a day that you wouldn't do it all over again.

    Listen to Deb about getting things set up now. It is of the utmost importance to not be blindsided and find your self running around when you HAVE to get things done. Things like a possible facility for your mom. Never say never. Do what you can now to help your dad but get him more help. Get yourself more help. The two of you can't do it alone. Trust me.

    Love, Meg

     
    Old 11-04-2010, 05:39 AM   #5
    Elf 1977
    Newbie
    (female)
     
    Join Date: Nov 2010
    Location: baton rouge, la
    Posts: 5
    Elf 1977 HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Debbie, Deb & Meg,

    Thank you all! I appreciate the quick responses to my post and the support I already feel I have here.

    I also have a darling and sweet significant other who has been and will continue to be very helpful, and a few close friends and family members that are always there if we need them. Hopefully with all of this support, we can/will make it through.

    I will continue to post on and off in this thread about happenings/updates/stories... maybe I will even turn it into a journal if I can find the time and energy!

    Thank you all again and I look forward to sharing more with you all and supporting you in your journeys too.

    -Elf

     
    Old 11-04-2010, 09:00 AM   #6
    TC08
    Veteran
    (female)
     
    Join Date: Jul 2008
    Location: Washington state
    Posts: 473
    TC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Hi Elf and welcome! As the others have said, sorry you had to find us, but glad to have you There is wonderful support here so know you can logon when you need to. I really relate to changing your life when faced with this disease. I'm not an only child, but I'm ***the*** child that is on the frontline with my parents (my DSD - "Dear Stepdad" has frontal temporal lobe dementia).

    Keep us posted as to how you're doing. I'll be thinking of you as you move closer to your folks and all that that entails

     
    Old 11-04-2010, 09:31 AM   #7
    Gabriel
    Senior Veteran
    (female)
     
    Join Date: Jul 2007
    Location: charlotte, nc, usa
    Posts: 7,235
    Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Elf, you are lucky to have a good support group. That doesn't always happen. Having a supportive hubby is priceless. Make sure you take time for him as well as yourself. Balance is so important in this disease. Don't give up everything. Hold on to what is most important as best you can! I love forward to reading more

    Love, deb

     
    Old 11-04-2010, 11:48 AM   #8
    kenbob71
    Senior Veteran
    (male)
     
    Join Date: Aug 2007
    Location: Brandon, Mississippi, USA
    Posts: 544
    kenbob71 HB Userkenbob71 HB Userkenbob71 HB Userkenbob71 HB Userkenbob71 HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Elf,

    As one who HAD to do it pretty much alone, my hat's off to you for making that sacrifice for your mom and dad. My wife was 51 when she was diagnosed with Pick's Dementia, and died a year and a half later.

    I had one daughter in college 3 hours away, and a 14-year old at home. My wife's family is 1600 miles away. So I really didn't have much choice.

    Good luck, and like Deb or someone else said, please take time for yourself and your husband... you have to keep your life together as being important. Caregiving can take over everything if you are not careful.

    Your dad is very blessed to have you. K

     
    Old 11-04-2010, 12:23 PM   #9
    Elf 1977
    Newbie
    (female)
     
    Join Date: Nov 2010
    Location: baton rouge, la
    Posts: 5
    Elf 1977 HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Thank you Ken & TC08! I am already benefiting so much from having joined this forum! I am so glad I did - I found another one but it was sort-of dead...not many users or responses.

    You are all so courageous and a wonderful inspiration & source of strength for me.... I will be back...

    Thanks again
    Elf

     
    Old 11-05-2010, 11:08 AM   #10
    Elf 1977
    Newbie
    (female)
     
    Join Date: Nov 2010
    Location: baton rouge, la
    Posts: 5
    Elf 1977 HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Mom had a bad day today, and especially Dad. She has a slight case of psoriasis or something on her scalp... it was a dry patch that she picked and picked and scratched at, until over time, it became a wound! A scab, really. Sorry if this is gross. She has seen a dermatologist about it again and again... they took a sample to ensure it wasn't something worse (skin cancer, dermatological lupus), and it's not, which is good. BUT she will not leave it alone, and it won't heal. My Dad tries, everso patiently, each day to get her to STOP picking at it, but she won't. She resents him for bringing it up, and literally flies into a rage when he says something to her. This morning she had a hair appointment and right before they left, she picked at it and it started bleeding. My dad tried to clean it up for her, knowing that she was about to have her hair cut, and she had a conniption fit again... he couldn't cancel the appointment either (tried that). So he called and talked to me and just feels he's at his literal wit's end with this.

    There is a cream she should be putting on it twice a day to keep staff infections and other things out, but she won't let him do it. He is so frustrated... And what's worse, I don't think this is one of those things I could help with if I were home, because she would resent me and get mad at me in just the same way.

    My Dad thinks there needs to be a 3rd party - someone older and an "authority" figure to remind her to leave it alone... maybe going to the Dr. again or getting my Aunt to come over who is an LPN... I don't know. Bad day at black rock

    Thanks for listening. I'm sure I will have many more similar stories in the time to come.

     
    Old 11-05-2010, 03:52 PM   #11
    Gabriel
    Senior Veteran
    (female)
     
    Join Date: Jul 2007
    Location: charlotte, nc, usa
    Posts: 7,235
    Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    I feel for you on that one Elf because my Dad did the same thing. He had a place behind his ear that stayed for over a year and several places on his head. He would dig in them until they were bleeding sores... over and over and over. One thing we did find that helped more than anything was Vaseline. A dollop of Vaseline on the spot will keep her fingers from grabbing the skin and tearing it. The fingers slide over it instead of digging in. The other thing I had to do was keep his finger nails very very short and filed them smooth. That also helped his fingers not gouge out the places. Sometimes it was a minor fight to get the Vaseline on the places but then you could let it go until the Vaseline needed to be replace. Instead of constantly nagging, it was just a few times a day we "checked" it for him. We didn't tell him to stop... just slathered it with the Vaseline and stood back while he tried to scratch with the short fingernails and the slick Vaseline If you can't stop the behavior (and you can't) you have to make it ineffective!

    Love, deb

     
    Old 11-05-2010, 06:20 PM   #12
    Elf 1977
    Newbie
    (female)
     
    Join Date: Nov 2010
    Location: baton rouge, la
    Posts: 5
    Elf 1977 HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Wow Deb... that is so crazy to hear. I can't believe someone else has gone through that! The dermatologist actually doesn't know WHAT this is... just a dry patch of skin, I guess.

    Those are VERY GOOD suggestions - thank you! I will suggest those to my Dad secretly via email (she doens't check email anymore) and see if that will work. He already does her nails (yes, he actually paints her toenails and gives her mani/pedi's!) So that just may work.

    Thank you, thank you, thank you.

    Elf

     
    Old 11-05-2010, 09:49 PM   #13
    Gabriel
    Senior Veteran
    (female)
     
    Join Date: Jul 2007
    Location: charlotte, nc, usa
    Posts: 7,235
    Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    With Dad... it was absolutely nothing but a dry patch of skin. It was rough enough he could feel it and he would try to "get it off". That would lead to the sore, the scab, more digging... you know the routine! The Vaseline worked. I also used it on his hands and arms. His dermatologist recommended it highly. Said you can buy a lot of expensive creams and lotions but nothing beats good old Vaseline... and it made a huge difference on his hands and arms. They were baby soft and the dry patches were GONE. I put it on places on his face, his head, anywhere his arm could reach. Not only does it keep the fingernails from catching and tearing the skin... it is healing as well.

    That is one of the wonderful things on this board. You think it's so bizarre that you are the only one that has to deal with it and then you find out at least one or five others have had the same experience. Somehow there is power in numbers!

    Love, deb

     
    Old 11-14-2010, 02:56 PM   #14
    patw27
    Senior Member
    (female)
     
    Join Date: Jun 2008
    Location: UK
    Posts: 240
    patw27 HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Hi,
    My mother has dementia and is in hospital long term, she also has this hair problem and lost a lot of her hair at the top of her head. Luckily she does not pick at the head but does not always let the nursing staff apply cream to her head.

    I normally tell her that the doctor has ordered them to do it and sometimes that works.

    Thankfully it has cleared up a lot. I can also relate to the aggressive behaviour and I had a very bad day today when I visited her but hopefully tomorrow will be better.

    I also am an only child and it is hard

    God bless
    Pat

     
    Old 11-14-2010, 09:51 PM   #15
    Gabriel
    Senior Veteran
    (female)
     
    Join Date: Jul 2007
    Location: charlotte, nc, usa
    Posts: 7,235
    Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
    Re: My Mom has EARLY-ONSET - 61 yrs. old. (new to Boards)

    Pat, all we can do is hope for a better tomorrow There are good day and not so good day. We just have to hold on to the good moments and get through the not so good ones!

    I tell Mom I am giving her a message. I just put whatever cream I need on my fingers and start rubbing. She loves it. If she thinks it's medicine she balks.

    Love, deb

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    early signs jackson2008 Autism Spectrum 7 04-04-2010 12:56 AM
    Different question about early refills.. eddieJ85 Pain Management 14 09-26-2009 08:14 AM
    early miscarriage or just heavy period? savanannastar Trying to Conceive (TTC) 2 10-31-2006 01:35 PM
    early prescriptions rhonda73 Pain Management 10 05-21-2006 01:39 PM
    Early PMS or Early Pregnancy? Lisah79 Women's Health 2 07-05-2005 08:44 AM
    early HPT vs Dr office test nact Pregnancy 5 11-28-2003 11:00 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 09:08 AM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!