Mom or Dad want to play a game with Elvis?

(picture from ROS site) The ROS Play Therapy System now has Elvis on its variety of games designed for those disabled with Alzheimer's, Parkinsons, and other cognitive or physical issues. Read more here..

Concerned about your parents nutrition?

(Picture from Seniors List site) I found an article on Seniors List website called
' Nutritian and Hydration in the Elderly'. For those of us with older parents, we can all attest to the fact that their eating habits change. They want to eat less so we worry about their health, will they lose too much weight. If there is an illness, how does that impact their eating or drinking, are they focused too much on their condition? Is the condition the problem - with dementia or Alzheimer's they may forget to eat or drink. Sometimes incontinence is an issue. I know with mom, she would watch her drinking or fruit intake to stop her from going to the bathroom every couple of hours, especially if we were traveling or had to drive a long distance. 'Seniors List' mentions some things to investigate to see if you can find the root of the eating and/or drinking problem.
* Has there been a swallow study (Modified Barium Swallow) done to rule out a physical problem which makes swallowing difficult?
* Are ill-fitting dentures or poor dentition to blame for a decrease in eating?
* Is there a fear of drinking or eating because of problems with incontinence?
* Is depression a factor?
* Are medications to blame?
* Is dementia a factor?
* Is a decrease in appetite the result of a terminal illness?
Mom had issues with a couple of these - incontinence and dentures. So we adjusted her drinking with what we were doing. For her dentures, she would take them out before eating, we would cut up food in small pieces or shred it, eat more things like applesauce and yogurt. One time a dental hygienist told me that when older folks start losing weight, it affects their mouth and dentures will not fit properly. The 'Seniors List' site also lists questions caregivers need to ask if thinking about alternative nutrition methods. They are:
* Will alternative nutrition/hydration improve nutritional status?
* Will alternative nutrition/hydration decrease the risk of disease or prevent disease?
* Will alternative nutrition/hydration help to increase life expectancy?
* Will alternative nutrition/hydration improve the quality of life?
* Is alternative nutrition/hydration a short-term or long-term intervention?
* What are the risks involved with alternative nutrition/hydration?
* Are there any considerations if alternative nutrition/hydration is provided, but there is a "change of heart"?
So it is important to make decisions specific to the parent's condition and other medical concerns. People need to talk to their healthcare professional for advice.

Special Needs Trust.

I AM NOT IN THE FINANCIAL OR LEGAL FIELD. I AM ONLY RELAYING INFORMATION AS IT RELATES TO US, HERE IN OUR STATE. PLEASE CONTACT A PROFESSIONAL IN YOUR AREA FOR ADVICE -- SOMEONE WHO SPECIALIZES IN SPECIAL NEEDS TRUSTS; NOT EVERYONE CAN DO IT.

With Will getting closer to 21 and receiving SSI (Supplimental Security Income) from Social Security, there is a need to keep his money for his use. Even though he has another account, we have found that if the money in his account goes over a certain amount, SSI has to stop and will resume when the dollar balance is below the maximum allowed. I have already had to return a months 'pay' since I did not use it (Will did not need much so I couldn't spend it all).

Someone I ran into at a seminar spoke of a 'special needs trust' that she had set up for her child. So she gave me the name of her attorney and I went to meet with her to ask questions. Basically, there are several types and you would need to determine which is best for your son/daughter. Very simply put, what these trusts do is protect your child's assets while allowing them to receive income and any monies given to them even through inheritance and life insurance. There is an account which can be handled by a family member acting as trustee who is responsible for ALL payouts, investing, income received, tax filings, etc. There is another which is run by a third party, a team of people, taking care of the same issues. The trust's differences are who owns the trust.
As the attorney told me, if there are other children who may be able to handle this, it may be too overwhelming for them. What if they marry and move away? Can they handle this long distance? Another thing to consider - if there is no trust set up and he/she inherits money, probate court will designate a trustee, it may not be someone or a firm you want. One type of trust may ask for money to be paid back to Medicaid upon death, while another may not. According to our local trusts, there is no maximum or minimum dollar amount to establish the trust but there are fees and you need to be aware of them to determine how much to put in. There MAY BE NO MAXIMUM to how much can be in the trust and it will not affect social security. I was told by someone working for Social Security that the trust is NOT counted for eligibility for SSI. Again, it is ABSOLUTELY NECESSARY that you contact someone who specializes in these types of trusts to help you decide IF and WHICH is best for your child's situation. GOOD LUCK!!
(picture from SSI website)
Sites to look at for information: Plan of Massachusetts and Rhode Island, National Special Needs Network in Pennsylvania

More Resources for Caregivers

Through Caregiver Junction, a circle I belong to with Google +, there was a post about '6 creative resources for caregivers'

which was written by a certified nursing assistant, Lauren Davenport. She lists tools and resources that will help with caring for seniors and the disabled. From 101 Mobility Rotations:

** Online communication: there is online forums and support groups where you can share stories, information, tips, whatever.
** Health tracking systems: Lauren lists Monacaresa web based application that helps with the planning, coordinating, and managing the care of your loved one. I also had written a post regarding apps available. Also check iTunes.
** Assistive devices: there are grab bars, stair lifts, wheelchair ramps, automatic door openers, etc that can help someone with mobility issues move around and stay in their own home.
** Tablet/iPad: a great way to stay connected and keep up their cognitive development. User friendly it allows the 'swiping' control, allows for adjustment of screen brightness. The person can keep in touch with family and friends, reading a book, playing games, listening to music, look at pictures.
** Skype: this can help visually and audibly connect with friends and family who may be far away. They can talk and see the grandkids and tell stories. It may help with the loneliness.
** AARP Caregiving Resource Center: this covers all the basics for families and caregivers; information on insurance, healthcare, and even grief counseling.

(picture from 101 Mobility)

Documentary on Transition

I received a notice from school that there will be a show, Best Kept Secret, following a special education teacher at the John F. Kennedy High School in Newark, NJ. It follows them for a year and a half prior to their graduation, in other words through transition. "This is a personal story about some young men who live with (autism) and their very dedicated teacher in one remarkable school. It’s about the struggles they face beyond the confines of that school,” said Samantha Buck, the film’s director, who indicated that she was inspired to tell a story about how autism affects those from minority and less-financially-secure backgrounds. 'Best Kept Secret' will open on Friday in theaters in New York and Los Angeles. PBS' POV will broadcast nationally on Sept 23 at 10 pm EST.
Check out more information at disability scoop.

Tips from 'Modern Senior' about how to stay home longer.

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(picture from Modern Senior website). I was reading a posting from 'Modern Senior' website regarding how to stay home longer, in other words - how to avoid going to a nursing home and live in your own home. According to the article, 'aging in place can have a lot of mental and emotional benefits. One survey showed that the biggest fear among seniors was loss of independence followed second by the fear of having to move into a nursing home. It may come as a surprise that the fear of death came in last with only 3% reporting that it was their biggest fear. Having to leave your home can have a huge emotional toll that ultimately serves as a catalyst to other health problems. Aging in place can actually increase quality of life and longevity.'
The cost of going to a nursing home continues to rise. You need to check with your medical plans to see if and how much they cover. How does Medicare or Medicaid figure in? Best plan is to plan ahead, plan logistically, to avoid the cost.
Mobility, or lack thereof, tends to be the number one problem BUT there are solutions that can help for a period of time:
** One is a stair lift to help with stairs and avoid falls. There are a few different companies that sell them so you can check on what they offer.
** Second is a lift chair which is similar to a recliner that lifts someone up to a standing position and safely gets you seated without assistance.
** Three is a walk in tub or shower (add grab bars) and you can pretty much bathe yourself.

(pictures from my mother's remodel)
. Grab bars at the door can help get people in and out of the house.

Medical alert systems can be a comfort to elderly parents; my mom liked hers and it worked great when we needed it. I can attest to the distance it covers since one day, she drove away with it on & was about a mile down the street when she accidentally activated it. The company called me & 911. We all arrived together and NO MOM!! We were a little nervous, when I noticed her car was not there. So I called her cell phone and she told me she was down the road getting gas for her car. It was a good thing the EMTs and firefighters had a sense of humor!! While on this subject - - you may want to get a lock box (find a somewhat not-so-visible place for it) and keep an extra key in it and let 911 dispatch have the code number (they only give it out when there is a call). Mom was not too enthused about it but the way I figured it, it was better than fire fighters knocking down her door or breaking windows to get in, if I don't get there first and she could not make it to the door.
There are other ways to help get the home in shape for someone who may want to think ahead. See 'Preventing Falls' on Caring for Elderly Parents.
Also from 'A Place for Mom', there are some caregiver apps that can help.

Adaptive Equipment in Local Gym.

(picture from Turn to Ten website) I heard this broadcast and found the story to be a great read. What a nice idea - get equipment that seems to be similar to physical therapy equipment in a regular gym. This local 'Y' has an FES bike (functional electronic stimulation). I found a site from 'Restorative Therapies' with the same. The story I heard was about a man, a doctor, who was hit by a wave and suffered an injury to the back of his neck and was told he would never get off a ventilator or feel anything below the neck. Per the story - "So now he has sensation a little below the nipple line, which is huge. He's able to move his arms," said Witman's wife, Dee Dee. "He has biceps and triceps." This "functional electronic stimulation bicycle with an arm unit, and what it does is it basically works Dr. Gary Witman's legs so that they will function, actually peddle the bike without his help from his brain but actually having the muscles directly stimulated," said Luca del Borgo of the Newman Y.
From the Christopher and Dana Reeve Foundation, Paralysis Resource Center: Functional Electrical Stimulation (FES) applies small electrical pulses to paralyzed muscles to restore or improve their function. FES is commonly used for exercise, but also to assist with breathing, grasping, transferring, standing and walking. FES can help some to improve bladder and bowel function. There's evidence that FES helps reduce the frequency of pressure sores. Two companies make FES bikes in the U.S. Therapeutic Alliances, Inc., which originated the Regys 25 years ago, makes the Ergys 2 (www.musclepower.com). Restorative Therapies, Inc. offers the RT300-S which is operated from the wheelchair without the need for a transfer (www.restorative-therapies.com). RTI was started by Dr. John McDonald, the physician who got Christopher Reeve on an FES bike and who has claimed that FES helped Reeve get significant function back seven years after his C1 injury. According to McDonald, the FES bike can be more useful than just exercise. "We propose to use them for a totally different reason -- to promote regeneration and recovery of function." There is to date no support in the medical literature that FES affects recovery. There are some risks associated with FES. Fracture of leg bones is possible due to loss of bone mineral density. Also, FES can trigger autonomic dysreflexia in upper-level injuries. People with severe spasticity, contractures, or osteoporosis are not good candidates.

Unbelievably Sad & Hurtful Story

I was gathering my things to go to a work appointment and had the Today Show on for company, when my ears caught a story about 're-homing'. It was a good thing everyone had left because I stood there in front of the TV with my mouth hanging open!!!

It was the story of Anna Barnes, who was adopted in Russia and brought to the US when she was 7; this was her second 're-homing'. Now her second set of parents, Gary & Lisa Barnes, regret adopting her; they feel they were not told about her emotional & behavioral problems that she brought from Russia. You gotta love this analogy: from her dad -- “This is a bad analogy, but it’s sort of like selling a used car,” Gary Barnes says of why he and his wife weren’t told more. “If you tell someone it breaks down every day, nobody’s going to buy it.” At least he admits it is a bad analogy BUT STILL!!!! For them, counseling was too expensive and inconvenient - really!! Ever think of asking a clergy member, or a school psychologist, or a doctor for help??? A home for troubled kids said she was not a good fit. They spent ONE, OH BOY - ONE year trying to fix the problem, they figured 'they needed to get away from it'.
So they decided to give Anna to a couple they met in a Yahoo chat room/forum, Respite - Rehoming, who came forth and it was decided that Anna would go with them. This couple made up a home study, even with a social worker's name on it. This new 'family' took Anna to a dilapidated trailer with urine & feces on the floor, puppies left inside, and pictures of 2 other children who had 'died'. Plus this location was in another state and since this can be an underground network, there is little prosecution. Hope that changes.
After Anna ran into her adopted father, Gary brought Anna back because he knew something was not right about these people (just these people????). Anna is now living with friends.

What do people think?? These kids know that they have been abandoned by their biological family; they have been abandoned by another adoptive family. It is a defense mechanism to try and make people not like you, to see what they will do, to see if they will stick by you. These kids have little self-esteem, in their eyes - no one cares, they will only get moved around again so why attach themselves to a family.

A little ranting here -- COME ON PEOPLE!! Being the mom of 2 adopted boys from here in the states, through the local state agency, no one is perfect. These 2 boys came with their own sets of issues and to this day, can give us a run for our money, for different reasons. For a few years in high school, it felt like our oldest was on the edge to do just about anything - constantly acting out and defying rules, making bad choices. The middle guy tries our patience with his constant repetition of questions, statements, listening to the same music or videos or pieces of those things, not caring about personal hygiene. We knew almost nothing about their biological families and to this day, don't know much. BUT THEY ARE OURS. Legally according to the state (even tho I have been reminded, when the oldest is mad at me, that I am not his real mom), I tell him 'you're right! But in the eyes of the law I am. I am responsible for you.'. We love these guys like our own. When introduced, they are our sons, not adopted sons.

Do these people feel that biological children are better?? I have heard stories that would say otherwise -- kids are kids are kids and teenagers will make you want to pull your hair out and have sleepless nights. Were the Barnes' wonderful, angelic teens?? I just can't believe these people had the guts to face the public with this. Get this - If they turned Anna over to the state of Texas, the Barneses say they were told, they would be considered unfit parents and have to pay child support until she turned 18. OH TOO BAD!!! You accepted the responsibility, take care of the children. How much of a throwaway society are we???

To read the article and watch the video, go here.

Parents As Teachers.

(Picture from RIPIN)

As I was looking for an event on the RIPIN website, I found this post for 'Parents as Teachers'. It reminded me that a few years ago, I was asked to interview for a spot in this group; I did get through one interview (unfortunately some family issues prevented me from exploring it further). It really seems like a great program. "Parents As Teachers (PAT) believes that parents are their children’s first and best teachers. PAT is a home visiting program designed to provide all parents of children from before birth to age three with the information and support they need to give their child the best possible start in life. These services are without charge and are provided by trained and certified parent educators." The trained person was going to the home of someone who asked for help and providing help to that family through talking and playing. There are opportunities for families to join playgroups and attend parent group meetings to reinforce the importance of play for parents and children.

Click here to view local flyer: Your Baby Was Born to Learn.
The national website has 'profiles of impact' - people sharing their stories of how the program has helped them, check their outcomes research, and their advocacy position. If it sounds like a good plan for you or someone you know, check with your local school system to see if there is one in your area.

Want to be the family caregiver?? 4 steps to check.

Elderlink.com states that the Pew Research Center found that 21% of Americans care for an elderly parent. While sometimes this situation comes on quickly, there are things you can do to better prepare yourself for when it does happen.
** One is to talk to your parents - find out what they want as they get older or if something happens. Go over the possibilities - assisted living, nursing home, care at home. Find out if they have a living will and / or any advance directives.
** Two is to get important documents or papers - make sure you have social security numbers, get any insurance information, accumulate doctor's names & numbers, sign HIPAA waivers with all doctors so you can talk to them and / or ask questions and help decide on treatment and tests.
** Three is to know your employer's family leave policy - The Family & Medical Leave Act was designed to help people keep their job when it came time to staying home and taking care of a child or elderly parent. Know what this means for you and your job.
** Four is research senior care options - check the difference between assisted living and a nursing home, if someone is a veteran find out what the Veterans Administration can help with, find in-home care agencies in your area. Check to see what their insurance will cover.

Best to be prepared. Talk to others who hare been a caretaker or are currently caring for someone.

Check these sites for information (these are only a few):

ElderCarelink
Caring.com
The Savvy Senior
Assisted Living Directory
Seniors List

Adaptive Clothing and Equipment - Update.

My joining a Google+ community, Special Needs Clothing - Dress with Ease started me thinking about how it sometimes was hard to find mom something to wear when she started dialysis. She started with a chest port so we needed some type of blouse that would open low enough to allow access yet modest enough to wear around the men who were there. Sometimes buttons would work, other times no. When she changed to a fistual in the arm, (especially in the wintertime) we needed something that would be warm (they kept it cold in the center for the machines plus she was always cold being on blood thinners) like long sleeves yet would give access to her arm. Most times, she would dress in layers - sweater jackets over short sleeve shirts or t-shirts, or sweatshirts with loose arms. Then we would throw a blanket in her bag that went back and forth because the nurses would wrap that around her as she laid in the chair. As a caregiver, you may be shaking your head, yes - been there, done that!!
Anyway this started me looking a specialized clothing for seniors with special needs; these could even be used by special needs young adults. I have not tried anything from these places so I have no first hand knowledge of the quality or wear. BUT they do seem to offer a nice variety of items: it ranges from clothing to shoes to socks to equipment. In fact the shoes I have seen here are similar to the shoes Willie wears. I get his at Walmart. I use to buy Walmart's brand but have started buying Dr. Scholl's brand that they sell, only because I feel they wear better on Willie; they last longer.

Let me list and go through some of the websites I have found with clothing, etc.

Etsy.com: Men's and women's clothing which, according to the site info, are made when the order is received, with openings in the back, at the shoulders, at the hips, etc. (picture from Etsy.com)

eSpecialNeeds is a source for equipment for adults and children You can shop by brands, products, diagnosis. It seems they offer financing as well.

BHMedwear

not only shows adaptive clothing, shoes, socks, ponchos and raingear for patients but sells products for those in the medical field like scrubs, lab coats, uniforms, etc. They house linen and laundry items, incontinence care goods, diagnostic and medical equipment, bathing items to name some categories.

Wardrobe Wagon offers men's and women's clothing, undergarments,

sleepwear, hosiery and footwear, even a cape to wear if sitting in a wheelchair. There is a section - Young at Heart - which seems to show clothing for people who are NOT disabled ( I could not find anything in the description stating an unusual way to put the article of clothing on).

Adaptive Apparel shows a variety of goods from clothing to scrubs

to bed pads to masks, etc. It looks like they sell in bulk to offer a lower price. There is also a 'Solution Center' for any questions you may have regarding the benefits of diabetic socks, the convenience of velcro footwear, information on hospital gown fabrics.

Adaptive Mall has a variety of items, where you can even shop by whatever your need is. They offer choices in bicycles, strollers, bathing, items for the classroom. There is even a spot where you can submit a question to a therapist who will return with an answer within 1 business day for your special item and any measuring necessary.

I hope this may help some people who are looking for specialized clothing -- if nothing else, just to give you places to compare or maybe can help you locate that 'hard to find' item. Good Luck!!!

** According to disability scoop, if you live near West Allis, Wisconsin, you may now visit a store catering to those people who need some type of adaptive wear. Sept 20th, Accessible Wear will open offering clothing for those who are physically challenged. They also will do alterations. Check them out and good luck to the Neil Sherman and Lisa Brodacz!!