View unanswered posts | View active topics It is currently Wed Apr 16, 2014 6:28 pm



Reply to topic  [ 16 posts ]  Go to page 1, 2  Next
 Here to introduce myself 
Author Message

Joined: Mon Mar 01, 2010 10:19 am
Posts: 4
Location: Richmond, Virginia
Post Here to introduce myself
Hi everyone. Just got approved to become a member of this site, and it was suggested to me that I introduce myself here. So here we are :). My name is Becca. I'm a 34 year old wife and mother. I have three children...my boys are 5 and 6, and my daughter is 15 going on 35 (haha). Last fall I got a phone call from my mom. She and my step-dad finally got some answers to what was wrong with him. For a couple years prior to that phone call, my step-dad had been having various medical problems, both physical and mental, and the doctors were clueless (in my opinion). A doctor that my aunt works for was the first to shed some light...Parkinson's Disease. They went to a specialist in Philadelphia...a neurologist, i believe...and that's when they were bombed with Lewy Body Dementia. So we had his diagnosis...Parkinson's disease and LBD.
My step-dad is only 45 years old. My mom is doing the best she can (she's a member here too...her name is Deb) but it's hard for her. They are planning to move in with me and my family sometime this summer...maybe a little later. They live in PA, we live in VA. It's already been a struggle...my stepdad was declared disabled, and couldn't work, so no job. The process to file and receive disability has been a nightmare...the paperwork involved, the waiting, everything...having to file for assistance through the state...ooo, it makes me angry. I mean, do they not realize he can't work? How in the h-e-double hockey stick does the government expect them to pay the bills? Or get oil and coal for heat? Ridiculous.
So sorry about that little temper tantrum...frustration is my enemy it seems, and i've been frustrated quite often in the past few months. I'm here at LBDA to find answers, and support. To know what to expect when my parents move in. To find out as much information as I can so I can help my mom care for Scott (that would be my step-dad :) ) as best as I am able. All I know at this point is that his symptoms will come and go, and there is no time table for those symptoms. I know some of what I'm up against in the future...hallucinations, memory loss, possibly some fits of anger. And that the life expectancy ranges from 5-7 years on average. It's also my understanding that his being young is not in his favor...the younger LBD patients go faster. I have a lot of questions that I hope some of you can answer. Hopefully I will find support here that will help us get through what is to come. Thanks for listening.
Becca


Tue Mar 02, 2010 9:58 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Becca,

Welcome to the Forum.

I believe the older you are when you get LBD, the shorter your survival time is. You can verify that by searching for posts with this criteria:
keywords - age, prognosis

Good luck,
Robin


Tue Mar 02, 2010 11:26 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post 
Becca, welcome to the forum! It sounds like you are planning to bite off more than you can chew with your current responsibilities. I commend you for your generous heart, but having cared for my husband for seven years with this disease, I can tell you that it is a full time job.

Would he be eligible for Medicaid? --Pat


Tue Mar 02, 2010 11:55 am
Profile

Joined: Mon Mar 01, 2010 10:19 am
Posts: 4
Location: Richmond, Virginia
Post 
Robin-
regarding the age, i stated about the younger going faster because my mom called the helpline either yesterday or the day before and the woman she spoke to stated that because he's younger he'll go faster. that's what i based that comment on.


Pat-

I'm not sure if he's got medicaid or not...he's got some sort of health assistance, but i'm not sure what it is exactly. i'll have to ask my mom. as for biting off more than i can chew...boy do i know it, especially after reading posts on this forum. but what choice do i have? i'm the only one willing to help my mom. she's got a 15 year old son, my brother, who doesn't lift a finger to help her out now. my mom's got her own health issues...she's suffered from anxiety, depression, and adhd for over a decade, and her memory sucks. she says she feels like her memory is worse than my step-dad's. I always knew i'd be the one taking care of my mom when she progressed to the point where she needed care, but i never expected that i'd be having to take care of 2 parents at once. i'm confident that i can handle what's to come, but right now my biggest concern is the impact it's going to have on my kids...especially when scott's anger, agitation and hallucinations start, which i'm sure they will. my mom is absolutely determined to never put him in a home...she's worked in care facilities before, and says she'd never subject any of her loved ones to what happens in them. She's currently a home health aid...so she's definitely got the experience in caring for home bound ill patients that have a variety of illnesses...from alzheimers to paralysis. But I'm worried what's gonna happen when she's not able to care for him because of her own health issues. The responsibility will then fall to me and my husband...mostly me because my hubby works 40+ hours a week and i'm a stay at home mom. I have no choice, therefore i need to do my best gathering information and preparing myself mentally for the future, along with taking steps necessary to protect my children (although i haven't figured that part out yet!!)
Becca


Tue Mar 02, 2010 1:04 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post 
Welcome, Becca, and so sorry you are in this situation. For what it's worth, I'll give you my advice on your situation, which you are welcome to take, leave, or not even read!!! Your mom's declaration that she would "never put him in a home" is something you just have to ignore when the time comes. If you are willing to help them out and have them in your home, that decision should be yours, your husband's and your mom's. It isn't fair to your own family to be saddled with the whole responsibility, possibly for many, many years.
You need to think about your own kids and husband as well as yourself. Trying to take care of everybody often puts ourselves last on the list, which isn't good for anyone.
As far as your brother who doesn't help out. Where is he going to live? If he is coming into your home with your mom and stepdad, you need to make it very clear to your mom and your brother that life is changing, and he needs to step up to the plate and do his share of chores, caregiving, whatever. You should not and cannot take on a teenager too, who wants coddling. That just won't be good for any of you, and it teaches him nothing about growing up and becoming responsible.
Do you have siblings? If so, they need to share at least some in the responsibility too.
I'd go to the local welfare/social services and see what benefits your parents can get if they truly have no money. I don't know if that is part of the bureaucracy and paperwork you've done already. Also, if either one of them is a Veteran you can go to the VA and see what they say. Medicaid was designed for people who have no income, and little savings.
Good luck and keep in touch on the forum and chat. You are going to need a lot of support - so will your husband. Hang in there and don't be afraid to come to the LBDA site to vent, ask questions, whatever.
Also, if you haven't done this yet, I'd find a local support group to attend with your husband and mom too. Lynn


Tue Mar 02, 2010 2:07 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Oh let me step in here, I am the person who took that call and what I said was the opposite, What I said about a younger person is they often go without a DX longer because of being younger and also much depends on their overall health and I often invite a person to call as much as they need to because often things are misunderstood when they receive much information at one time, I consider my husband to have been younger when he was DX'ed and he lived 9 yrs and maybe more than we were aware of something being wrong.
I don't claim to know all the facts but I will try to find them out before hand! If I can't come up with an answer I would rather tell someone that than misinform them!

_________________
Irene Selak


Tue Mar 02, 2010 4:42 pm
Profile WWW

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Becca,
Welcome to the LBDA forums, I am glad you are looking into this before you take on the responsibility of a whole other family in your home with your own family, life with LBD can be extremely difficult.If it were me I would be looking at how this was going to effect my own family first.We all want to help our loved ones in need but this could be a long time.

_________________
Irene Selak


Tue Mar 02, 2010 4:52 pm
Profile WWW

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post 
These prognoses are mere generalities, anyway, based on averages. My husband was symptomatic by at least age 73, diagnosed at 75 and is now 80 and is not yet in the 'final stage'. The progress of this disease seems to go in sudden, rather than gradual, downturns. So there is no way of knowing how long your stepfather will live. He may very well outlive your mother, especially if she doesn't take proper care of herself.

Regarding Medicaid: Your mother may not want to place him [NONE of us do!] but when his behavior becomes more than she or you can handle, or it puts your family at risk, she will have no choice. Medicaid is a frustrating process, but they will pay for nursing home care if your parents have limited resources. Don't rule it out.


Tue Mar 02, 2010 5:59 pm
Profile

Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
Post 
Becca-
welcome to the group- we've been able to keep the anger and many other symptons under control with meds. hunt around for a good doctor even before they move. meds made a world of difference for my Mother and have allowed me to keep her home. there is much good info including for medical doctors on this site
good luck!
Sharon

_________________
syt


Wed Mar 03, 2010 12:44 pm
Profile

Joined: Mon Mar 01, 2010 10:19 am
Posts: 4
Location: Richmond, Virginia
Post 
Thank you to all who replied!!! It's wonderful to know there are so many of you willing to show your support!

Robin and Irene:

I'm wondering if my mom just misunderstood...which actually happens a lot...you are right about so much information being absorbed can be confusing! This might make me sound a little slow...but what is a "DX" that you mentioned???

Is there any way to determine what "stage" he's in? Mom told me that the doctor...not sure which one...told them he's progressing rapidly, but I don't even know what "progressing rapidly" implies, exactly. The only "medication" he's on that I can remember my mom telling me is some sort of patch that goes on his head. Today she told me that he told her it wasn't working, but I don't even know what the patch does. I'm trying to keep a notebook full of LBD information, and I reckon i'll have to write stuff like that down.

My brother will be moving here as well, and one reason he doesn't want to move here is because he knows he won't be able to pull any crap with me...he and my daughter are the same age...one month to the day apart (yup, mom and I were pregnant at the same time!)...so I know all the tricks. My daughter's tried them all on me...and lets not forget that I was a teenager too!!! Anyway, he told Mom that he doesn't want to move here cuz he doesn't want me bossing him around and telling him what to do...Oh Well, guess he'll have to get over that. He will be living under my roof therefore he will have to abide buy my rules...which include daily chores. I have one other sibling...a brother a year and a half younger than myself, but he's useless...selfish and unwilling to help...unless, of course, he gets something in return...he and i do not speak because of his negative traits, and so help from him won't come.

I will check into local support groups, doctors, and also social services to see what we can expect when they move. I hope transferring his disability and other stuff is a lot easier than it is getting approved for it!!!!!


Thu Mar 04, 2010 4:45 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
DX = diagnosis

If you do a search here of "stages," you will find one post from last year with caregivers' version of LBD stages.


Thu Mar 04, 2010 5:11 pm
Profile

Joined: Sat Sep 22, 2007 5:53 pm
Posts: 90
Location: Texas
Post 
Becca, Is your stepfather a veteran? Only asking because there is a program through VA called aid and attendance.
Lorraine


Thu Mar 04, 2010 8:00 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post 
I'm glad you are already thinking about your brother moving in, and he already knows he can't act like a spoiled kid in your home. Sorry your brother won't be any help - that is just so unfair, but I guess it's the way it is. You have lots of support on this site, so don't be afraid to ask for help here. Lynn


Thu Mar 04, 2010 9:00 pm
Profile

Joined: Mon Mar 01, 2010 10:19 am
Posts: 4
Location: Richmond, Virginia
Post 
No, he is not a veteran, so that is not an option :(


Sat Mar 06, 2010 1:33 pm
Profile

Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
Post 
Hello MontanaDolphin,
I am new here and do not have a lot of experience so take my advice for what it is worth.
From the little bit I have read in your post you seem to already have a very bad opinion of your younger brother and the 15 year old.
Is the 15 year old he son of the step-dad? If not, why are you so determined that this be on him too? He is not even there yet and you are anticipating cracking the whip on him.

Doesn't your mom understand what the future developments with HER husband's decline, and the anomosity that is already resident against the 15 year old will do to HIM? Your mom is determined not to allow her husband to go to a nursing facility at any cost to anyone? And she is also not quite strong mentally as you stated.

I understand you wanting to help her but you may not be helping her. You already cannot stand your brothers and this will not help. I am afraid you will end up feeling anomosity for your mom and step-father too.

Of course I know NOTHING about your family other than your comments about your brothers and your mom. I am simply projecting what I think would have happened in our family if someone had tried to care for dad
at home. I did it for only 4 months.

I think 15 is too young to deal with this in the face every day. As it is it is hard to see a peachy future once you start dealing with a LO with this type of downhill disease. The incontinence, the crying, the dementia, it can break you. It takes away the blinders we have on that keeps us happy and doing our daily little activities that make us happy.

Right now nothing makes me happy, all I think about is my dad and how sucky his life is. I don't have an hour where I am not thinking about it.


Sat Apr 03, 2010 3:14 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 16 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr