Need advice concerning mentally challenged aging uncle

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Posted 2/23/2013 by Superscrapilicious in NSBR Board
 

Superscrapilicious
StuckOnPeas

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Posted: 2/23/2013 3:19:56 PM
LONG BUT PLEASE READ IF YOU CAN OFFER ADVICE ON WHERE WE SHOULD GO TO SEEK HELP FOR MY UNCLE.

My uncle is 56 years old. He was giving too much oxygen at birth and was left mentally disabled. He has the mentality of a 15 year old. He lived with my grandmother until she passes away in 2002. Now he and my Aunt (very sick and needs constant care) live with my mother. My mother is 68, he is 56 and my aunt is 70.

My mother does her best to cook, clean, manage their bills and doctor visits for them but it is becoming difficult. My uncle has become very angry and argumentative with my mother. He also has diabetes, a leg wound that won't heal and other medical issues. He is so angry with my mother that he refuses help from her in regards to his medicine. He has pulled all the labels off his medicine bottles and has taken the bottles to his room. She has no idea what meds need refills or if he is taking them properly. He yells at her and throws things at her because he needs a refill on one of the meds but refuses to tell her which one...so when he needs it he just bangs on her door and yells (she locks herself in her room because she is scared of him.)
He refuses to take a bath and smells awful. When I visit my mother, I can smell him from the back of the house, when he is in the front. he shares a bathroom with my aunt and she says that he is so dirty that when he goes to the bathroom there is a black slime left on the toilet seat and he refuses to clean it so she does it.

He says he doesn't like the bathtub so he wont take a bath/shower in it. He isn't taking his meds properly and takes the bus to the ER in hopes they will admit him because he likes watching TV and laying in the bed while food is brought to him (yes he says this is why he goes) The fact is..most of the time they can admit him because something is out of control because his lack of taking meds and not bathing properly...the doctor said this.

My mom is at wits end with him and he won't listen to anyone...he is angry with everyone. He use to listen to my brother and cousin but now is mad at them because they told him he has to treat my mom better. He won't see anyone for his anger issues.

I am crying writing this...but I think he need to find him an alternative place to stay. Somewhere that will have the skills on how to handle him. I feel like we are giving up on him and my grandmother would be crushed if she knew and I know it will break his heart but we don't know what to do. We have all taken turns taking him for the weekend, to give my mom a break but he doesn't listen to us and it is very difficult..and there are are 3 people he will visit and now there is only one he will visit..so my mom stays in her room and I don't think it is fair.

He is on Medicare and Medicaid. We live in Texas. We don't even know where to start or where to look. My mother has been named his guardian.

Anyone have any suggestions on where we start? Sorry so long but I have asked everyone I know and they don't know.


I am a child of the most high God. He has promised me a plan of hope and a future (Jer 29:11)
He is enthralled with my beauty (Ps 45:11)
He rejoices over me with singing (Ze 3:17)
He bestowed on me a crown of beauty instead of ashes,
the oil of gladness instead of mourning (Is 61:3)
You see my beloved is mine and I am his. (SOS 2:16)
He can be yours too. Just ask. MT7:8


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siameseplease
BucketHead

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Posted: 2/23/2013 3:26:54 PM
Can your mom contact the hospital where he was last admitted, and ask to speak to the social worker or case manager? They may have some advice to offer about facilities, what your mom can do if she doesn't feel safe in her own home, what Medicare will cover, etc.

I work at a large hospital in Baltimore and I know that our case managers handle these issues when patients are admitted and their families are no longer able to care for them.

Good luck! I feel for your whole family, including your uncle. It's not an easy situation at all.


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Kiwi-Jo
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Posted: 2/23/2013 3:29:15 PM
Obviously I don't know where you can go for help (I don't live in USA), but I just want to give you and your Mom lots of ((((((((((((((hugs)))))))))))




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scrapper al
PeaNut

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Posted: 2/23/2013 3:32:54 PM
I'm sorry things are so difficult for your mom and family. Have you looked into senior services for your aunt? That might give some relief to your mom. Are there any adult day care services your uncle could use to give your mom a break? Or, at 56, is your uncle considered a senior and perhaps some senior agencies could help.

SoonToBeDivorced
PeaNut

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Posted: 2/23/2013 3:33:41 PM
Maybe this would be a place to start: Texas DSHS community mental health services
I wish I had more specific ideas for you. Hopefully some of the peas in Texas could help. That sounds like such a difficult and heartbreaking situation. Bless you for trying to help!

**Angie**
Pea Who Should Be Cleaning!

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Posted: 2/23/2013 3:38:14 PM
Imo, giving up on him would be if you let the situation continue. He needs help, help which your mom can't provide. She sounds like a very strong person but sometimes, things take more than you have.

Is your mom his POA? Whoever it is should contact his doctor and explain the situation. See what they suggest needs to be done so that everyone is taken care of.

(((hugs to you and your mom)))





SuzastampinCTMH
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Posted: 2/23/2013 3:39:55 PM
I don't know if Texas has group homes for the mentally challenge, but if they do, that's where you need to be headed. Sadly, eventually your mom and aunt will be gone and there will be no one to look after him. I don't know how TX works, but in NY the individual has a Medicaid Service Coordinator. They will work to find placement in a facility that best fits him. If he's on Medicare and Medicaid, I assume he's receiving SS and possibly SSI. Is he the payee on the checks, or is your mom or aunt? I think somebody's first call should be to Medicaid to find out whether there is a service coordinator already assigned. If so, a meeting should be set up to start the process. In NY, we are backed up years on open spots in a home, so, you should get the process going. In NY, we have a classification system of priority 3,2,or 1. Individuals have to a priority 1 to get a spot because there is such a waiting list. By the ages of your mom and aunt, if there is a priority system, I would imagine he would be a priority 1.

Also, many stares have what is called an ARC. It's an organization for the disabled. It may not be listed under that anymore since it contains the R word, but you should be able to find it or something similar. They should be able to give you some guidance.

I hope this helps some.



**cindyupnorth**
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Posted: 2/23/2013 3:44:04 PM
Is he IN the hosp now? then you need to call and get him assigned a social worker. Let them know that your mom is no longer able to take care of him. They can obviously see that by his smell, and med's, etc. They can go thru the steps of having him labeled a vulnerable adult, and then in to more appropriate services. Possibly an assisted living facility or mental health facility, SNF, etc. Whatever best fis his needs. You DO need to get a social worker involved though. IF he isn't admited right now, call the Dr office, and talk to the nurse about getting a social worker assigned.






Jayde
StuckOnPeas

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Posted: 2/23/2013 3:52:26 PM
If he receives Medicaid & Medicare he's already documented in the system. Your mother (as his guardian) has access to his records and should know who his case worker is. That is the person you start with. They have to be made aware of his declining status and can tell you where to go from there.

My sister is disabled & has seizures which affects her behavior. Our problem is similar: lack of hygiene, semi-violent & doesn't take meds properly. Her behavior comes and goes according to her seizure activity. She refused to believe how bad it really was until I recorded some video of her & made her watch it. She's now in an assisted living facility but really needs a nursing home.

I wish you the best.


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revirdsuba
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Posted: 2/23/2013 5:10:55 PM
There should be no feelings of guilt for your mom or aunt or even you. Grandma would not be able to take of him presently either.

((((((((((((((((HUGS)))))))))))) for you and your family!

Free~Bird
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Posted: 2/23/2013 6:05:04 PM
I was going to suggest a group home also. I worked in something similar to that when I was in high school and we had many residents like your uncle. It would be a really good setting for him. They'll get him properly medicated and he'll be with his peers.

The important thing is, to make your mom feel like it's not her fault and she's done the best she can. This is too much for you mom and she needs to have her own life back.

Is the aunt doing ok?


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SabrinaP
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Posted: 2/23/2013 6:05:57 PM



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CnBsmommy
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Posted: 2/23/2013 6:21:31 PM
texas has some top notch group homes. I'd contact MHMR or Adult Protective Services or the Social Worker at the hospital. Any of these places will be able to help. He is a danger to himself & needs help. This isn't a matter of anyone failing or disappointing someone. It's a reality.

2peafaithful
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Posted: 2/23/2013 6:28:11 PM
I would contact MHMR or DARS to find out what other options there are for him. I think he needs to be in another living environment. His family has done well but it sounds like everyone is in a new season and has different needs. I think his medicine needs to be TOTALLY looked at too.

Do you know if he is on a waiver program like MDCP, CLASS or HCS?

Superscrapilicious
StuckOnPeas

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Posted: 2/23/2013 7:11:07 PM

Do you know if he is on a waiver program like MDCP, CLASS or HCS? ... I am not sure what those are?

His SSI comes in my moms name and once a year she meets with someone from the government and goes over his bank statements.

He is at home right now and my mom is locked in her room because he is mad again. My aunt is fine. She has her conditions under control.

Thank you for all your responses and hugs, I felt each one of them. Growing up he was our favorite uncle. There were 11 grandchildren within 6 years of eachother. When we visited grandma, we spent all day with him....playing baseball, riding bikes, playing with his drums, basketball, building model planes etc. but as each of us grew older and started dating, going to college, getting married and having children, he stayed the same. We had grown up and our children didn't see him as often as we did, so they were just scared of him. He hugs too hard or when he kisses you on the cheek...he slobbers. We are use to it but the young ones are not. S we have all grown past him.

He talks of buying a home, getting married, and having us all over for dinner. Each Christmas my mother and one of her other sisters give him money to buy gifts and he buys all if us gifts...model cars, video from a movie in the 80s, magazine and I help him wrap them.

He doesn't have a clear concept of money so he doesn't realize that the money given to him to by gifts is more than his week,y allowance but each Christmas he frowns and said he had more money so that he could buy more gifts.

And he knows no stranger. He has no fear or inhibitions. If he sees someone he likes he just goes up to them and talks to them...I don't care if it is an officer, head of a community center or even the Mayor of Houston. They all knew him by name and didn't mind him at all. Sometimes we would be astounded by some so his remarks. I forgot to mention he is going deaf so most of the time we have to text him or write things down to communicate with him. Well One weekend we brought him home with us and I told my husband that we needs gas. Out of the blue my uncle says from the backseat " look at those gas prices, damn OPEC!"

Sadly we on,y see glimpses of that side of him.


I am a child of the most high God. He has promised me a plan of hope and a future (Jer 29:11)
He is enthralled with my beauty (Ps 45:11)
He rejoices over me with singing (Ze 3:17)
He bestowed on me a crown of beauty instead of ashes,
the oil of gladness instead of mourning (Is 61:3)
You see my beloved is mine and I am his. (SOS 2:16)
He can be yours too. Just ask. MT7:8


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EFS 18-55mm
EF 75-300mm


Gsquaredmom

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Posted: 2/23/2013 7:27:11 PM
I think you have gotten some good advice here. If none of those phone calls work, I think the next time he goes to the hospital, tell them he cannot come back home. He is a danger to himself and others there. The hospital social worker can then help him find a place that can support him appropriately.

He does not sound like he is functioning at the level of a 15-year old, either. He sounds much lower, to be honest. I think he needs an assessment.



Christine58
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Posted: 2/23/2013 7:33:31 PM
If your mom is locked in her room she needs help with him NOW. Getting him into a group home could take some time and your mom needs to be safe. What if he hurt her or your aunt? Please call someone to get your mom some help and get him someplace safe.




Some people only dream of angels, I have held one in my arms.





Tuva42
PeaFixture

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Posted: 2/23/2013 7:38:49 PM
Your first phone call should be to your senior citizen center in your town or county. They have social workers who have the training to help you navigate this rocky road.

Stop feeling guilty. Finding him a safe place to live is NOT giving up on him. It's finding the best place for him. He does not have a good quality of life living with your mom. It's not her fault, she doesn't have the strength or skill or authority to deal with him. Finding him a nursing home where they can give him his meds and make sure he is kept clean is the right answer for him. If your grandmother were still alive and still involved in his care she would understand completely. You have to do what is best for him and that is not living in your mother's house. Bless your all's hearts, this is such a painful, difficult situation to be in. I hope you can find a good solution soon.


Laurie

Edgy Coolness
PeaFixture

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Posted: 2/23/2013 7:48:10 PM
Call Adult Protective Services, it was the best choice we ever made for my Mother and my Brother has the 24hr care that he requires.

http://www.dfps.state.tx.us/

It may be that they can offer in home care of all of your relatives or at least help make decisions for their long term care.

Also, if you are in Houston, you can check out my Brother's nursing home:

Stoneybrook Healthcare Center

My brother's wing is mainly middle aged people with disabilities but I will not lie if you are going to make this choice, someone from your family will need to make arrangements to visit at least weekly, my brother's roommate has CP and can not speak but must have come from a home where he was well taken care though no one has ever visited so my Brother as well as Mother has become his de facto Advocate.

Good Luck and let your Mother know there is help available.









Pridemom
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Posted: 2/23/2013 8:35:48 PM
http://www.dads.state.tx.us/services/index.cfm

Your uncle can probably qualify for a community based residential program.




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Superscrapilicious
StuckOnPeas

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Posted: 2/23/2013 8:40:24 PM
Thank you edgy


I am a child of the most high God. He has promised me a plan of hope and a future (Jer 29:11)
He is enthralled with my beauty (Ps 45:11)
He rejoices over me with singing (Ze 3:17)
He bestowed on me a crown of beauty instead of ashes,
the oil of gladness instead of mourning (Is 61:3)
You see my beloved is mine and I am his. (SOS 2:16)
He can be yours too. Just ask. MT7:8


Canon Rebel T4i
EFS 18-55mm
EF 75-300mm


Free~Bird
'Cause I'm as free as a bird now

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Posted: 2/23/2013 8:45:39 PM
I agree, if your mom is locked in her room, the time is right now. I don't even know if I'd wait through the night. It's easy to armchair quarterback this of course.
From an outsider looking in, I'd probably put the ball in motion on monday. I might even take some of it out of my own mother's hands if I felt like she was in a dangerous situation.


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I-95
It's all just nonsense anyway!

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Posted: 2/23/2013 8:58:08 PM
I'm sorry. It's hard to make decisions like this for a family member.

I would also suggest starting with Adult Protective Services. They will at least be able to direct you to appropriate resources. It sounds like he needs a case worker who will help you develop a plan for getting him into an assisted living facility.

I'm wondering whether his current anger issues might be related to the death of your grandmother. If he always lived her, and is mentally challenged, it must be a huge adjustment for him to accept her passing and adjust to a new living arrangement. He must feel as though she abandoned him.

If you do get him into an assisted living facility, please visit him frequently, show him pics of your kids, and make him feel like he's still part of the family, and hasn't been rejected. I know you are not rejecting him, but the mentally challenged don't always see that these changes are in their best interest. Best wishes, and I'll keep you in my thoughts.

Calgaryscrapper
BucketHead

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Posted: 2/24/2013 12:20:52 PM
My neighbour has a sister that is mentally challenged since birth. This Sister is now in her 60's. She lived with them for many years. My neighbours were very good at helping her control her emotions etc. A good nap usually works. The sister came to me one day as she locked herself out and wet her pants. She asked if I was mad at her. I told her I could never be mad at her. Anyhow, as my neighbours are aging and got no help from other family members the decision was made to put her in someone's home. Our Government does not provide as well financially for family members caring for someone as they do for an independent person. My neighbour's daughter lives now at this other gals house. She volunteers sometimes, goes bowling etc. Now, when she is with family for a weekend or a road trip she really enjoys herself. Sorry this is so long.

nanett
PeaAddict

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Posted: 2/24/2013 12:58:15 PM
I have a son with profound concerns and I really just wanted to say it seems like your family has done the best by your uncle that they could. I loved reading about your childhood with him and how hard your mom has worked to make a life for him in her home.

This is our biggest worry with our son...that there will be someone there to love him and take care of him if we aren't here to do it any more. Your mom has done what she can and it just sounds like it's time for him to have a more structured setting to meet is needs and your mom needs to be able to live happily in her home.

It sounds like you've gotten good advice on who to contact to begin the process. I just wanted to say I appreciate all your family has done for your uncle as a mom of a child with special needs.

cropduster
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Posted: 2/24/2013 1:18:39 PM
As a person with a special needs brother who requires 24 hour care and is in his sixties, I wanted to give you a (((HUG))). Everyone here has given great advice and is spot on. I feel that you will have to be the pro-active one and make the phone calls and get all the information that is needed to get the ball rolling for the care of your uncle. I will be sending up prayers for you and your family. Keep us posted, if you have the chance, and let us know of the progress.


cropduster

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kimberly38
Ancient Ancestor of Pea

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Posted: 2/24/2013 4:23:48 PM
IF your mom is that scared of your uncle, that she needs to lock herself in her room, you need to call the police.

They can come and give her the best advice of what they can legally do. If he is threatening, they can possibly arrest him and take him to the hospital to be looked at. If he is a danger to himself or others, he can be committed.

Your mom needs to understand that while she cares for him, at this time, the best thing that she can do for your uncle is to place him somewhere where he can be properly treated.

You never know what can happen. Your mom may very well be the "well" one right now in this home, but what happens if, let's just say, she has a heart attack during the night? Your aunt is left alone with uncle and by this time, your aunt is not able to handle your uncle.

Your mom needs to be proactive and find out as much info. as possible.

I-95
It's all just nonsense anyway!

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Posted: 2/24/2013 5:48:16 PM

IF your mom is that scared of your uncle, that she needs to lock herself in her room, you need to call the police.

They can come and give her the best advice of what they can legally do. If he is threatening, they can possibly arrest him and take him to the hospital to be looked at. If he is a danger to himself or others, he can be committed.


Actually, this is not quite true. We often hear the words 'A danger to himself, or others' as if that's all it takes to get someone Baker Act'ed. Not so. If the police show and Uncle is calm, they won't take him. They will talk to him, ask him if he understands that he shouldn't yell at people, and that he should takes his meds etc. but unless he's chasing someone around with a knife, they'll pretty much let him be...or tell you that you can take him to a psych unit and ask to have him evaluated...but these days, good luck getting a bed on a unit.

Now, if he were a meth head, they'd take him in a NY second, evaluate him, then put him in a nice rehab program...but an unstable, potentially dangerous, mentally ill gentleman....nope.

KKayeNJ
PeaNut

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Posted: 2/24/2013 6:04:31 PM
I95 is so right about this. After my mother died my father got very depressed. He was voicing suicidal thoughts and plans. My brothers took him to the ER and, even tho they had heard him saying these things, there was nothing the ER could do. My dad was alert and oriented and was therefore able to refuse care. The ER couldn't even give him any meds. They could only suggest that he go to his doctor. My mom was the person listed on his medical records as the person his doctor's office could talk to, so my brothers couldn't get help over the phone to get him in to the doctor. It took days to get him in. The lady at the doctor's office kept telling my brother if he could just have my mom call and my brother finally told her if she could tell him how to get a phone call into heaven he'd be happy to do that. It was an awful time for my dad and my brothers.

Mewcat
Ancient Ancestor of Pea

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Posted: 2/24/2013 6:15:20 PM
[[Hugs]] I agree with other posters that if none of the resources listed in this thread help that contacting a case worker at the hospital would be helpful.


~*Melissa*~

Really Red
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Posted: 2/24/2013 7:20:52 PM
I don't have any better help than what has been suggested here. I just want to say that your mom (and her mom before her) are saints on earth. Your mom should not have to be scared to live in her own home and your aunt, who is so sick, shouldn't have to clean slime off toilets.

I hope and pray your mom is able to make this tough decision.


Andrea

When one door of happiness closes, another opens; But often we look so long at the closed door that we do not see the one that has been opened for us.
Helen Keller

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PeaFixture

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Posted: 2/24/2013 7:38:54 PM
If you live in Houston, there should be an assistance line. You should be able to call 211 24 hours a day, 7 days a week and speak to someone who can help you. God bless you all!


"The problem with socialism is that sooner or later you run out of other peoples money." Margaret Thatcher

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Christine58
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Posted: 3/2/2013 6:24:31 PM
How is your mom???



Some people only dream of angels, I have held one in my arms.





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PeaFixture

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Posted: 3/8/2013 12:47:16 PM
Is there an update to this? Would love to know how it is going!


"The problem with socialism is that sooner or later you run out of other peoples money." Margaret Thatcher

"Most People live life in the fast lane. *I* live life in oncoming traffic."

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