Caregiving

Infuriating handicapped cars taking up handicapped van parking spaces!!

Kerry — Fri, 24 May 2013 00:39:30 GMT

It makes me so mad to see a car with a handicapped tag parked in a handicapped van space, bc then there are no van spaces available to let down our ramp so that we can allow my brother to get out of the van, unless I park in the traffic way, block traffic, and help him out. That makes me so irritated!! Does this happen in other cities, too?

Urinary tract infections and indwelling catheters with quadriplegics

Kerry — Thu, 23 May 2013 18:57:26 GMT

My brother, who has quadriplegia, constantly has major UTI's that scare me. I am not used to seeing urine looking like Chinese egg drop soup! Yesterday he was passing blood clots and having fever but he does not seem to want to go to the hospital ER. He always wants to wait it out, but he's also passing bright red blood around his suprapubic tube site. He had an infection like this in January that was so bad that he had to spend a week in the hospital taking vancomycin by IV and was having to use an infectious disease control doc. If he has constant UTI's, when should I get worried and get help for him? He says that these infections are constant and to not get so excited about them, but I don't want his infection to spread to the rest of his body, turn systemic, and cause serious damage... What should I do?

An Inspiring Story of LIFE, LOVE & FAMILY - Follow Near Fatal Accident / T4 Spinal Cord Injury

Diane — Wed, 15 May 2013 21:30:43 GMT

Hi All - We wanted to take a moment to share our story with you. On April 19, 2012 Stephen Pattelena, a 43 year old divorced father of five year old twins was involved in a near fatal auto accident that nearly claimed his life. He spent 2 months in the ICU at Christus St. Vincent Hospital in Santa Fe New Mexico followed by six months of rehabilitation to enable him to life independently following the T4 Spinal Cord Injury he sustained. The inspiring story of his family's reunion following the accident recently appeared as a front page story in the Santa Fe New Mexican - It's a truly beautiful story of Life, Love and Family we wanted to share with all of you. --- http://www.stevesrecoveryroad.com/santa-fe-new-mexican-article/

At a crossroad.

Tiffany — Sat, 30 Mar 2013 16:01:27 GMT

I seem to be at a crossroad. My husband and I were only married 5 months when he had his accident. 5 1/2 years later I know I still Love him but,... he is a perpetual pessimist. This last year has been the toughest for me. He had a baclefan pump fail and since then his memory has become extremely bad, worse he has become verbally abusive and just last week it crossed over to him becoming physical (punched me in mouth). We have spoken to the physiologist and they put him on a new med. It seems to help. But, I am still having a hard time with what has happened already. I know I would not have put up with this from any other man. Where do I stand....at a crossroad!

Helpful guide to living with disabilities and staying happy

Jessie — Tue, 19 Mar 2013 21:28:47 GMT

I have written a book for people with disabilities and/or going through hard times. I have been through many hard times, the worst being a car accident in 2000 that put me in a coma for a week, gave me a brain injury and paralyzed me. Despite all of my life’s trials, I am still happy. In my book, I speak about how I have done this and how others could do the same. I have many tips and messages in it that I hope could help those people to do this.

I would love nothing more than to have my book published and available to people as soon as they become disabled. As I say in the book, I know things would have much easier for me if I would have had a “guide” to help me after I got out of the hospital and had to move forward with my life.

I have tips for everyday activities, bathroom activities, my chair, going out, as well as positive points and jokes.

The final three sections are about achieving goals, bonds with loved ones, and not forgetting those you have lost.

I have looked into publishing the book, but it is very expensive and I do not have much money. If anyone knows anyone that may be able to help me, please let me know.

ps- This is not just a pamphlet. I have 33,696 words. I really want to help!!

Caregiving for my Sister with Spina Bifida, Incontinence

Jamie — Tue, 12 Mar 2013 16:35:17 GMT

Hello,

My sister (38, Spina Bifida, not sure of the terminology but she is paralyzed from her waist or so down)has recently moved in with me from an un-ideal situation.

I need help, lot's of it because I am not sure where to start. The person she was living with still has not switched over any of her things, so I cannot ask her doctor yet. But I would like to be informed when I do make the appointment.

I am having a hard time with her incontinence and it's hard for me to decipher if its her unwillingness to pay attention (she loves computer games and such, and gets very focused on whatever she may be into at the moment) or if it is just physically impossible for her to keep dry.

Right now I try to have her cath every 3-4 hours, but it is a struggle to get her to do it. Or she may do it, and have maybe an ounce in the cath bag and then the rest just voids(?) on the floor or drips off the back of her chair(and, from the outside, it would seem she doesn't care, although I can't really tell). I thought maybe her briefs might have been an issue, but the more I study the situation, the more I am not sure. Of course it is affecting our household, as I am literally cleaning up urine(the floor, sheets, chair, etc) all day long.

It seems that if we are in a tiff, she caths less as a response - and when she first moved in, I did everything for her, and she didn't have this problem(she cathed, but I went as far as to put her on the bed, change her brief, put her in the chair, etc) that burned me out very, very quickly, as I also have two kiddos, a job and the house to take care of too.

Also, How can I teach her to put her brief on better?

I'm just on the verge of tears and I need advice, please. Thank you.

Toilet cushion

LoriK — Mon, 11 Mar 2013 14:31:32 GMT

I use a toilet/shower chair made with PVC pipe. It has a regular plastic toilet seat and its on rollers. Does anyone out there know of something more comfortable ?

Items Needing a Good Home

carriep — Tue, 22 Jan 2013 17:05:08 GMT

One week ago I lost my husband, his battle to deal with his tetroplegia was difficult and I miss him, but he's at peace. This site has been amazing for the last 20 months and I am forever greatful. There are a few items I would like to pass on if people are in need: 2 - stylist, 1 - 12", 1 - telescoping, Inglis House Drink-Aid for wheelchair, a wrap around fork and spoon. These items were not over used, there just wasn't enough time...but I would love if they went to a good home. We also have a side loading wheelchair van that's in good shape. I in the year that we owned it we put less than 1000 miles, if anyone is in Ohio looking for a van, this maybe an option.

Bedsores, I have the answer:)

Tammy — Thu, 17 Jan 2013 17:47:58 GMT

My son is quadriplegic, C4/5 and L/11 bullets still remain, it has been 5 years, he is bedbound for most of the time, due to many different situations surrounding his injuries, he has never had a bed sore, he lays sometimes 8 to 10 hrs NOT KIDDING at a time with nothing more than a light pink spot that blanches, we through Invacare have a pressure pump mattress which is the miracle mattress and I know there are others out there, I have seen the ones at the hospitals don't compare, all who are bedbound and deal with any kind of sores have to have this particular one, I have been given alot of credit from docs for his skin not breaking down, but I cannot take any of the credit, we have had his mattress get shut off accidentally and also it has gotten leaks or our electric has gone out and I have watched his skin break down within a few hours, at those times he came close to having a sore, but a new one comes or electric comes back on I literally watch his skin heal back to normal within hours, not days hours, it has blown my mind and after myself experiencing what a true pressure sore is because before my sons shooting I cared for his dad who had terminal lung cancer and could not laydown for weeks before his death and caring for a pressure sore on his tail bone because he could not get off of it for relief, I was horrified by it and felt so helpless and that sore just added to his pain, I wish I knew then what I know now, I would have had this pressure mattress for him it would have helped relieve at least one pain he was dealing with, I have been trying to let people know I have even called Invacare myself because I am just a average person dealing with a tradgedy the best I can I just can't sit back with this info when I know so many people regardless whether SCI or other reasons people are bed bound. I know there are pressure pads out there but this one is a have to HAVE, I drag it to the hospital, i have seen theirs doesn't compare to his, If you know anyone with anykind of bedsores, you will watch them heal within no time with this pressure mattress it will blow your mind:) insurance should cover it buying it is around 450 dollars my son will never be without it, help me spread the word if I help just one person its worth it to me Thank you to anyone who will listen:)

What does your service dog mean to you?

JLo — Wed, 14 Nov 2012 16:24:37 GMT

We talk a lot about the enormous help caregivers provide and the support system they are to our friends and family living with disabilities. Service dogs can also be another kind of caregiver. Aside from being trained to open doors and be life savers, literally, they are "man's best friend."

I often write about my love for four-legged-friends. Saralee Perel also wrote an incredibly hear-warming piece about her beloved dog, Gracie. I warn you, it's a tear-jerker! When I was an intern long ago with the Reeve Foundation I wrote a piece about service dogs and the main thing I will always remember, is they are usually labs. Until now! Just yesterday, I read a piece about a woman and her husband, who is living with quadriplegia, training Rottweilers as service dogs. My family has had two Rotties and I simply adore their devotion!

After reading the piece about these Rotties, share your thoughts on your service dogs or animals, and what they mean to you!

Here's part of the piece:

Gering resident Susan Deal has been involved in showing dogs for more than twenty years.

She got involved in showing English Springer Spaniels, but it wasn’t until she owned Rottweilers that she started “seriously competing.”

Deal’s husband, Mike, was seriously injured in an accident, resulting in him being paralyzed. Through the years, Mike had Dobermans and Rottweilers and the couple chose a Rottweiler, Harleigh, as a service dog for Mike, who is a quadriplegic.

“All of our dogs are service dogs, in some capacity,” she said. “Rotties are fabulous dogs. They are smart and trainable. They want to please.”

Parent Caregivers of children with mobility impairments needed for phone survey $50

PRC_Bernadette — Wed, 14 Nov 2012 14:41:13 GMT

Participants Wanted for Research Study

The National Center for Health Statistics
is looking for adults aged 18 and over with children living in the household to answer a variety of health questions that may be asked on a national survey. We want to talk to parents or guardians of children 2 to 17 years of age who may have difficulties in the following areas: seeing, hearing, walking, learning, behavior. We are also looking for adults who have awareness of death rates in the U.S., and smokers. The survey research interview will be no longer than 60 minutes and participants will receive $50.

FOR MORE INFORMATION,
Please call: 301-458-4676

Centers for Disease Control and Prevention
National Center for Health Statistics

Diaper Rash, need help...

paris 85 — Mon, 12 Nov 2012 19:24:47 GMT

I have tried everything from using topical creams prescribed by the primary doctor such as: Nystatin and triamcinolone Aceronide and Clotrimazole and Betamethasone Dipropianate creams.

I have used a combination of Neosporin and Desitin maximum strength 40% oxide. Currently using a combination of Balmex Ointment mixed with pure petroleum jelly.

I only started using the Balmex and the petroleum jelly combination yesterday. I am hoping this will help and stop the rash, it has been more than two months this started and at this point, the skin is very red and dry. The very thin top layer of the skin is gone, I honestly do not know what to do, my concern is the potential of the skin braking and starting a sore.

I am trying to get the insurance company to approve a wound care specialist or dermatologist to make a home visit in order to make a proper evaluation, no success.....

So far, they have approved a home health nurse to come to the house, today was her first visit; she said she was there to apply the medication. What medication I asked... I need a doctor, N.P or a wound care specialist to do a home visit and evaluate and determine what medication should be used.

I suspect others in the site caregivers and/or SCI have had diaper rash issues. Can anyone give me some insight as to what have proven successful for you?

Please help me, help my husband!

Home Alone: Family Caregivers Providing Complex Chronic Care

Gerthro — Fri, 05 Oct 2012 14:12:55 GMT

A new national survey finds 46 percent of family caregivers perform medical and nursing tasks for care recipients with multiple chronic physical and cognitive conditions. The study by the AARP Public Policy Institute and the United Hospital Fund shows family caregivers provide medication management – including administering IVs and injections – as well as a number of other medical and nursing tasks.

Read the full report.

Find resources and watch videos of people taking about being caregivers.

medicare

Mary — Wed, 19 Sep 2012 12:08:25 GMT

Mom With A Mission
Just need to sound off, really angry about the way Medicare is. My son was in a motorcycle accident 2 years and 6 months ago he was one of the lucky ones with great insurance and a job he had for 25 years, now he is in a wheel chair with limited use of his arms and hands on disability, incomplete C6 C7. Then came Cobra, paid the high insurance rates, after 18 months they would no longer carry him so we had to struggle the last 6 months to keep him covered with a policy and high rates and high deductibles, just so excited about MEDICARE starting, no one told us the great limitations attached to Medicare, part A, B, which cost, and of course you need part D drug policy, then if you have to go in the hospital you have a deductible of $1156.00 plus 20 percent and that is every 90 days not per year, so we look for a supplement and the drug plan because his meds are very expensive, these are limited because of his age after 2 months of looking and talking to anyone that would listen he found a supplement policy of course it is "in network" so he cant go to some of his doctors without paying and this we will deal with but then the drug plan, he takes 12 different meds 3 or not preferred, cost allot and after 6 months he goes into the DONUT HOLE (what is this) his meds reach the cost allowed by Medicare after that he will have to pay $460.00 monthly for meds till he reaches the out of pocket amount, I just wish this had been explained to us much sooner and now not sure this next year will be so great after all, Oh he also gets $60.00 to much on his disability to qualify for any help from state or government agency's, Why is this such a problem? It is on the news daily about Medicare going broke and no money "why" must we as AMERICANS and paid into a program our whole lives worked hard thinking the time would come that this money would come back to us and now we all suffer, Just wish I had been aware sooner. Medicare is written in such a way that many can not understand the rules Medicare has set forth. If anyone is going on Medicare in the near future start looking at it now. Thanks for listening, everyone on the Reeves Foundation site need to write their Governors congressmen, and our President

Foot Ulcers

carriep — Wed, 22 Aug 2012 17:27:45 GMT

I am looking for a good way to get heels off the bed. My husband currently has a blister that we are all worried could go into other things. He has drop foot boots, but he really shouldn't way them 24/7 and pillows don't seem to work well.