Subheading

Spouses caring for veterans are the nation's new heroes

Monday, April 8, 2013

VA Caregiver Peer Support Mentoring Program Peer Facilitated National Call

VA has announced a caregiver national conference call to help all caregivers learn about caregiving from others who have experienced it.  Please mark it on your calendar, follow the directions below to register and join us.  Here's the information as posted by Veterans Health newsletter:

 
 
 

VA Caregiver Peer Support Mentoring Program
Peer Facilitated National Call
 
The VA Caregiver Peer Support Mentoring Program is pleased to announce the first Peer Facilitated national telephone call scheduled for Wednesday, April 17, 2013 at 2 p.m. EST.  Caregivers of Veterans will have an opportunity to listen and dialogue with other Caregivers and learn from their experiences.   The Peer Facilitated call can be easily accessed from your home or cell phone. This call will feature, Mrs. Chani Kaibetoney, Wife and Family Caregiver of an Operation Iraqi Freedom (OIF) Veteran. Mrs. Kaibetoney will present, “How to Get What You Need While Navigating the VA System: The Caregiver’s Perspective.” 
 
If you are interested in participating, please contact your local VA Medical Center’s Caregiver Support Coordinator to register. You can locate the Caregiver Support Coordinator at your facility on the Caregiver Support Website, www.caregiver.va.gov . You may also find out more information about upcoming calls and Caregiver resources by reaching out to your Caregiver Support Coordinator.  
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Sunday, February 10, 2013

A NEW YEAR ~ ANOTHER ONE SURVIVED

First of all, I want to thank God that he has allowed my husband and me to have had another year spent together.  With the arrival of 2013, we faced new challenges that have made us stronger and more able to handle the obstacles He has put before us.

Let me bring you up to date a bit from my last posting in November.  About a week after that posting, while tending my chickens, "herding" (if you can use that term for chickens!) them in for the night, playing "ring around the coop" trying to get a few reluctant ones to go in for the night, my foot slipped out from under me in our wonderful muddy area around the coop ~ thanks to a great deal of Oregon rain ~ & down I went.  The result was that I had a sprained ankle.  Not good.  The ankle itself seems to have finally healed and doesn't hurt with normal usage, but the back of the ankle is still sore.  It is especially hard to go down stairs ~ that movement seems to irritate it, so I still need to be careful. 

Being my husband's caregiver that required me to bring in boxes of dialysate weighing 3000 ml of fluid for one size and 5000 ml for another, was a challenge with a sprained ankle.  Add to that a sore leg, arm, ankle and back from the fall made me pretty pathetic!  Gimping along, though, I bravely continued with the duties that I had in front of me.  Of course, that slowed everything down, including Christmas shopping, grocery shopping, etc.  What used to take me minutes now took me a half hour and longer.

Thanksgiving came and went with a special visit home with some members of our family that made the time go even faster and my pains seem minor.  But unfortunately, our lives were not to be quiet and peaceful.

On December 8, my husband started complaining about stomach pains.  Our first thought was that he had peritonitis, a common condition with peritoneal dialysis (PD) patients.  However, since he'd already experienced that, he said it felt different.  So the hunt was on to figure out what was causing his pain and discomfort.

When suggestions from his clinic proved unsuccessful, we were told to take him to the VA hospital emergency room.  Gathering up our emergency bag and essentials in case I needed to stay overnight, we trundled on up to Portland to see what the problem was. It was around 6 pm when we arrived.  What was seen on an x-ray was an intestinal obstruction of some kind.  They informed us that he would need to stay the night and that they wanted to do an MRI to check more closely.  At that point, there wasn't any reason for me to stay and he wanted me to go home to rest, so with a kiss and a hug, and his insistence that he didn't mind, I left to go back home. 

Leaving him in the emergency room was a hard decision, since I had never left him before.  Thoughts running through my mind were:  Was I doing the right thing?  What if something bad happened and it takes me at least 45 minutes to go back?  Will he think I'm abandoning him or that I don't care for him, thinking more of myself?  What willl our adult children think when they find out I left?  Would they censor me or understand?  Should I have insisted I stay?  I knew he was in good hands and he HAD asked me to leave.  He told me he would rest easier if he knew I was home with our two beloved dogs, that he worries about when we're gone.  So with assurances from the doctor that they would call me immediately if he had to go into surgery or there was an emergency, I headed back home.

Early the next morning I was back up to the hospital.  He looked much better, saying his pain and discomfort was gone, and I felt so relieved.  He was told that an umbilical hernia he'd had repaired three years ago had reherniated and part of his intestine had slipped through the break, in effect, clamping down and closing his intenstinal tract.  A doctor merely massaged the intestine back into place, but the hernia still had to be surgically repaired.  So all seemed as well as could be under the circumstances. 

Our children visited later in the day and were reassured that their Dad was doing okay.  After a nice visit they left to continue to their destination for the day.  Not long after, he was brought his dinner.  So far, he hadn't had much more than liquids.  I was a bit surprised at the meal they brought:  chicken breast, green beans, noodles, green salad/dressing, bread, fruit and juice ~ lots of carbs for a diabetic!  He took a bite of salad, a bite of chicken, a small drink and then said he really didn't have any appetitie and the pain had returned.  It wasn't long when he started having problems.

Not going into detail that may turn some off, they realized that he still had a blockage somewhere and couldn't get rid of stomach contents that normal people usually can get rid of all the time.  They said they would have to do a CAT scan to find out what was the problem.  They put a tube in his nose to his stomach to help him keep things cleared out, since nothing could go anywhere but back up.  This was turning into a very serious situation and I was very alarmed.  He, however, didn't realize exactly how serious it was; he was just trying to cope.

Once they had things under control, he once again suggested I leave so I wouldn't have to drive home in the dark.  He worried about that.  Realizing that he would rest easier without the worry, I said goodby and headed back home again.

Upon my return the next day, there was no IV and the tube they'd inserted for his stomach was gone.  When I asked him about it, he said he'd had a bad spell of claustrophobia during the night.  The hospital gown had ridden up and he felt like he was strangling.  He said all he knew was that he had to get out so he started pulling out the tube and IV.  He successfully did so and the nurses just kept them out.  From that point on, he seemed not to need them.  His Nephrologist told him they wanted to keep him at the hospital until they could get him into surgery, rather than have him go home and possibly have problems, and they didn't want him to have to go through having to be admitted again.  So the waiting game started.

While waiting for surgery to be scheduled, they started him on hemodialysis.  He wasn't thrilled about it, but he couldn't do the peritoneal dialysis because they wanted no pressure against that ruptured hernia.  We looked at it positively in that he could compare hemo with PD to see if he was, indeed, having the best treatment for his particular situation. 

The first day on hemo didn't go badly and he had no problems.  They always did it early in the morning, so by the time I arrived he was already well into it and I'd wait in the room for him to be brought back.  The second day he told me they had a problem with the veins and his blood started clotting.  What resulted was bruising so badly on his arm that it was bruised from his wrist almost to his shoulder and on the back side of his wrist.  Not a good day.  My heart went out to him; I felt so badly that he had to have bad things happen.  But he never complained.

Each day I went up to stay with him, helping him to be comfortable if he needed it.  It was very difficult because he felt pretty good and really just wanted it all to be over and go home.  He did admit to me that he was very grateful I'd brought him to the hospital and I replied that I was too, because there was no way I could have handled all that happened to him in those first 24 hours or so.  He might have died had we not brought him up, because of the constriction of his intestines, and by the time we or others figured out what was going on.  That is a very serious situation.

Friday, a week after he'd gotten admitted and after his third hemo treatment, he had his surgery.  It went well and they kept him for most of the day to be sure things were going well.  At last, we could bring him home.  During his stay, with the exception of one or two, all nurses and staff were wonderful and we felt he had excellent care while staying at the VA hospital.  It was an opportunity for me to see what kind of care he'd get should it be necessary to go again. 

For the next 6 weeks, he had to be on hemo at a local facility while he healed from surgery.  That involved a new routine for us:  Tuesdays, Thursdays and Saturdays we needed to get up by 6 so he could have a decent breakfast, then go to the dialysis center for his treatment.  He said it was a real ordeal because he had to sit with his arm in one position and his legs elevated, which resulted in cramping.  He couldn't alleviate the cramps by walking them out, so had to endure.  The cramping is a natural side effect because he was on a 3-1/2 hour treatment which is quite fast for the blood to go through the body and back again.  In addition, he felt very restless, also a side effect.  He said the chairs were very uncomfortable, the room was very bright and there was lots of noise, so sleep was impossible.  When January rolled around, they had pushed us back one hour, so we then had to get up at 5 so he'd be at the center on time.

I bought him a portable DVD player so he could watch movies, which helped pass the time.  He couldn't read because he only had one hand to use.  TV was boring, so the movies seemed to do the trick.  At first he got quite cold, but the more treatments he had, the less that bothered him.  The only problems he had after the treatments was that he was quite tired.  That was worse when they took more fluids out. 

By the end of 4 weeks or so, he was really struggling to get through it. All he wanted was to get back on his PD treatments at night.  It was a good experience in that he could compare the two treatments.  The things he didn't like on the hemo far outweighed the things he didn't like on PD.  He realized there was a lot more good on the PD than the hemo.  By week 5, I was telling him "You only have 6 more treatments to go!".  Then it was "You only have 2 more treatments to go!"  That seemed to bouy him up to tolerate it one more time.

Finally, this last week, he got to start back on PD.  Everything went smoothly.  He also realized that even though the treatment increase from 10 hours to 12 hours each night, he didn't HAVE to go to bed!  He could move his machine far enough over that he could be on the computer to pass the time.  Now he can go to bed at a normal hour and he's been sleeping better.  Also, for some reason, his machine is almost silent where before it made all kinds of noise.  Don't know what happened, but we're glad, as it helps him sleep!

So with all that going on, and just doing some things I've wanted to do around the house after Christmas, I havn't been very good about keeping this blog up.  What I did realize is that life is still pretty good, things can be done that keep me occupied and satisfied, and with the close call we had, I realize that taking care of my spouse is something that I enjoy doing and showing him how much I love him is part of it, by doing for him.  He is very appreciative and so far, all is going well.

I hope all the spousal caregivers had a good year and can look forward to this new year with an easy heart.  When I said "For better or worse, in health and in sickness, 'till death do us part", I meant it.
Happy New Year and may you have a wonderful Valentine's Day with your loved one ~ share your love and let your spouse know how much you care!

Saturday, November 17, 2012

TOP 10 WAYS TO CELEBRATE NATIONAL FAMILY CAREGIVERS MONTH
1. Donate to the WSA (Well Spouse Association) Friends & Family Campaign in honor of a spousal caregiving relative or friend.
2. Offer a few hours of respite time to a family caregiver so they spend time with friends or simply relax.
3. Send a card of appreciation or a bouquet of flowers to brighten up a family caregiver's day.
4. Encourage local businesses to offer a free service for family caregivers through the month of November.
5. Help a family caregiver decorate their home for the holidays or offer to address envelopes for their holiday cards.
6. Offer comic relief! Purchase tickets to a local comedy club, give a family caregiver your favorite funny movie to view, or provide them with a book on tape.
7. Find 12 different family photos and have a copy center create a monthly calendar that the family caregiver can use to keep tract of appointments and events.
8. Offer to prepare Thanksgiving dinner for a caregiving family in your community, so they can just relax and enjoy the holiday.
9. Provide transportation for a caregiver and the person being cared for to a certain amount of appointments.
10. Help family caregivers find information and resources on the internet or to locate a locate support group.
- - - -
From Well Spouse Association
 
 



Wednesday, November 7, 2012

Our Journey Through VA

As I mentioned in "My Story", our journey with the regional Veterans' Hospital started in 2002.  This post will attempt to inform you what we have experienced in the way of care, appointments, treatments, etc. with VA in order that you have an idea what to expect should the need arise for you to seek help from this wonderful institution.

Our initial contact with them (other than my husband applying for care at our local VA office) was when we had to take him in to get the wheels rolling so he could get immediate care for his diabetes, which was beginning to dangerously wear him down.  Granted, that first contact was with the American Legion officer, but he also was a Veteran, as well as our friend who helped us get to the right people.  The American Legion officer was very caring, treating my husband and I with the utmost respect and compassion.  Within days, our appointments started to get him stabilized.

At the beginning, we had a small co-pay for his medicines, but no charge for the visits to the hospital/clinics because at that time, there were no service-connected issues.  This was something we could handle, as it was less of a cost than what we had been paying for his medications in the private sector.  This was a huge weight off our shoulders.

We were assigned a primary care physician.  This is one area of VA care that we were not very satisfied with.  Of all the experiences we've had with the VA, it is one that wasn't up to par.  We never could quite connect, because there was no effort on the part of the doctor to visit or learn much about what was going on.  Most of the time was spent during a visit with him putting data into the system, which gave us the impression he wasn't really listening to my husband or caring about my husband and whatever issue we were there for.  There would then be a referral to someone else or changing something on a medication.  Throughout the entire time we were under that care of that doctor, we never felt comfortable.  Fortunately, we've just recently gotten another primary physician and have immediately established a rapport.  We thank God for this blessing.

Initially, many tests were administered and specialty clinics visited in order to get an overall health analysis for my husband.  They didn't just focus on the diabetes, but his general health.  It was a bit overwhelming, especially since we didn't know any of the doctors and didn't know our way around the hospital/clinics.  From the very beginning, we were struck at how caring, respectful and kind everyone was ~ from the youngest assistant to the more experienced doctors. Another aspect we were awed by was the friendliness and helpfulness of other patients who were willing to offer suggestions and shared experiences, steered us in the right direction and generally made us feel comfortable being there.  This is something that I've always made a point of paying back when we visit the facilities.

From that point on his care was monitored with upcoming appointments for each issue they felt needed attention.  A class on what diabetes is and how to live with it was one of the first steps.  Unfortunately, the diabetes specialist was in another facility than the one we were assigned, but the availability of buses that took veterans to various other hospitals, clinics and facilities helped a lot.  Still, it was an all-day event.  Follow-up didn't turn out to be what we had hoped, due to the fact that the regional VA hospital hadn't been assigned a diabetic specialist and wouldn't have one for many years. I did feel that this was one area where the VA needed improvement, as there were many people in my husband's generation, particularly Vietnam veterans, who had developed Type II diabetes. I learned that there were more Vietnam veterans who had Type II than the general population. It was this fact that prompted the VA to make the determination that it was service-related from being in theater in Vietnam because of the spraying of Agent Orange. At that point in time, benefits were increased to reflect this service-related condition.   

All in all, the class was very informative and we were well armed with much information about how to deal with diabetes.  Over the next several years, we only saw the diabetic specialist a few times.  Treatment was still oral medication and monitoring the blood sugars.  So we floated along without really having any idea about how well or bad things were going, due to the fact that VA didn't have anyone to follow-up with us.  Howvever, in the meantime, VA kept up with his general health with periodic appointments at various clinics to offer care, further medications and/or minor surgeries.

As is the progression of diabetes, there came a time that the oral medications weren't enough and insulin was recommended.  In the last year, the regional hospital put on it's staff a full-time diabetic specialist.  He was very helpful in getting my husband onto a better program of insulin, and usage of the insulin, that has resulted in more controlled blood sugars which have helped him tremendously in his health and with the kidney disease.  When we first visited with the specialist, he was very informative, friendly and helpful.  He would call my husband frequently to get all his readings and then make adjustments with his dosages.  We were very grateful and relieved that we finally were getting some assistance on this, because over the years, we felt that the issue of the diabetes was something that wasn't being addressed very well.  That was totally turned around with this new specialist.  We now know that if there is an issue and it is necessary to have assistance with this aspect of my husband's health, there will be immediate help.

A side effect, if you will, of diabetes is kidney disease.  We were assigned to the Renal Clinic and had a wonderful doctor and nutritionist.  During this stage of my husband's health, we never felt that we were left drifting or not knowing where to turn or how to get help.  Frequent monitoring and adjustments to medications and diet were made throughout the several years of this stage.  We had a couple of renal doctors during this time and the one we had the longest would often call us after hours with lab results to talk over what they meant and how to adjust things, if necessary.  The nutritionist, as well, would call us after the labs to assist me in any dietary needs to help with diabetes control.  My husband stayed pretty level for about 4 years and then the time came to make some major decisions.

VA signed us up for a class to learn about all options available for the time when it would become necessary to either have a kidney transplant or go on dialysis.  This was a day-long class that was very informative.  We learned that our regional facility has the shortest wait for transplants in the nation, usually within 2 years.  So it was a large group with folks coming from several states in our region.  It gave us a lot to consider for the next step that would be a major life-changing choice.

One of the first steps was a surgery for a fistula. This is to allow for hemodialysis should it be necessary in an emergency or if my husband opted for peritoneal dialysis and it wasn't working. It required two veins to be connected in his wrist. As time would go on, these veins would expand, making a portal for the dialysis treatment. As with any surgery he's had, the care and treatment he got before and after was outstanding. This surgery was done well in advance of the time he needed to have dialysis in order for it to "cure".

My husband thought he would opt for a transplant, so VA sent us to a home dialysis clinic that partners with the VA for further instruction.  This was a week-long preliminary training course to learn everything about transplantation and dialysis.  To say it was a huge learning curve is an understatement!  Very overwhelming.  But we persevered and discussed and discussed some more.  The wheels had started turning toward getting on the transplant list.

This involved a battery of tests, both physical and mental that the VA conducted.  Another week or so of appointments, tests and visiting with various specialists.  No rock was left unturned.  A dental exam was also necessary.  There can be no health issues, such as infected teeth, to stand in the way of the transplant procedure.  After that was all through, we waited to learn the results.

About the time we learned he had been approved "nationally" for the transplant and were contacted for updating on the testing, we had a hard decision to make.  I asked my husband to really read over the information that was given to us about all that was involved with transplantation:  the long hospital recovery (he thought it would just be about a week or so ~ it's 4-6 weeks!), the follow-up labs several times a week to watch for rejection, then labs/appointments every week, eventually slowing to once a month, the double-handful of anti-rejection and supporting medications necessary to take, what is necessary for caregiving, etc. and the fact that the first 6 months are critical; if you can get past that, chances are pretty good that there won't be rejection, but there is still that chance, even up to and after a year.  During all that time, many labs, appointments and testings are necessary. 

After realizing what it truly entailed, he opted not to have the procedure.  A large part of that decision was based on his age and other health issues, which wouldn't assure him any more longevity than dialysis.  When he informed VA about his decision, they were so nice and understanding.  They respected his decision and told him that if he should change his mind, they would be happy to start the procedure again to offer him that option.  We were very appreciative of their understanding and support in this matter.

VA has been very good about contacting us in plenty of time for each appointment.  They give a printed sheet at the time an appointment is made for either further treatment, another clinic appointment and/or follow-up, which you can take home for handy reference.  Then, within a week or so, another notice comes in the mail.  As well, about a couple of weeks prior to the appointment, a card will arrive with similar information.  Then, a day or so before the appointment an automated phone call comes as a reminder.  You can also call and get any and all appointments. 

Since my husband has been enrolled as a patient, a new tool has been added:  My HealtheVet.  This is an online program where you can keep your health records, keep track of appointments, refill prescriptions and send messages to your doctors.  I've found it an invaluable tool for staying on top of my husband's medications.  You can check it out on my links list.

Throughout this long journey with VA, my husband has had various minor surgeries to make his life a bit better.  The VA does everything it can to make a veteran's existence as comfortable as possible.  Their outlook is that these people served our country and now it is their turn to serve the veterans.

With each health issue we've had to face, VA has been very helpful in determining which can be considered for increased benefits and/or service-related issues.  Once a claim has been presented, we've had our answer within a couple of months, most times within a month or less.  We've been very pleased with that aspect of VA care. 

As you walk into our regional hospital, there is a message above the doors leading in to the facility from the main garage, as well as in the lobby:  "The price of freedom is visible here".  When I first saw that, it brought tears to my eyes, because all you have to do is look around to see what many of the veterans have paid for that freedom, yet they are very humble and appreciative for the care they are given.

I thank God every day for the care that VA has and is giving to my husband to make his life easier.



Thursday, November 1, 2012

Natural Remedy For Dealing With Stressful Situations

Found an interesting article while perusing the Well Spouse Association website.  As I haven't tried this remedy, I cannot personally recommend it, but thought it could be useful to others to check into.

Rescue Remedy is a well-known composite of 5 single essences that are part of the self-help stress relief system of the Bach Flower Remedies.  As one user on the website said about it:  "Since discovering the remedies about 20 years ago, they have been an integral part of my caregiving life, and often ~ quite literally ~ saving it.  They help me maintain emotional balance, even when I feel the world is caving in."

Created by Scottish physician/immunologist/bacteriologist Dr. Edward Bach in the 1930s, the Bach Flower Remedies (also called Essences) consist of 38 single essences, plus the aforementioned composite Rescue Remedy, that address and correct "negative" emotions such as fear, loneliness, despondency and anxiety.  They are non-addictive, effective and gentle.  They can be given to children, the elderly and even animals.  You can start and stop using them at any time without fear of withdrawal symptoms.  As that user stated:  "Although I prefer a more natural approach to healing, those who choose to use anti-depressants can augment with the Bach's without fear of any drug interaction."

She continued:  "Depending on what's going on in my life, I combine up to 6 or 7 at a time to create a personalized mixture; other times, I just need one or two doses of a single essence, depending on the severity and longevity of the given situation.  I call the essences my 'miracles in a bottle'.  They have never let me down.

Throughout my years as a caregiver, the remedies have given me hope when I was without hope; consolation when I was in despair; support when I was overwhelmed; and comfort when I was traumatized."

For more information, visit the Wikipedia entry on Dr. Edward Bach or The Bach Centre.

Excerpted from an article published on www.wellspouse.org

November is Family Caregiver Month

Received this in my email today from Veterans Health:


"A Message to Family Caregivers

from

Laura Taylor, Director, National Caregiver Program

Deborah Amdur, Chief Consultant, Care Management and Social Work Services

Department of Veterans Affairs

Family Caregivers Matter! November is National Family Caregivers Month; a time to celebrate and recognize the multiple roles and responsibilities of so many Family Caregivers of Veterans and the many ways in which you matter - to the Veteran you care for, to your family and community, to your Veteran’s VA health care team and to the nation.

Being a Caregiver often means that you, the Family Caregiver, put your own needs last, at the end of a never ending list of “things to do." This month, why not treat yourself by putting an enjoyable activity, just for you, at the top of your “to-do” list?  Throughout the month, Caregiver Support Coordinators across the country will be holding special events for Caregivers of Veterans to say thank you for all you do and re-affirm the importance of the care you provide. Check out the Family Caregiver month activities at your local VA Medical Center. You can locate your Caregiver Support Coordinator (CSC) on the Caregiver Support website www.caregiver.va.gov by simply entering your zip code. If you are not able to attend an event, the website has information on “Staying Strong” and “Caring for Yourself." You will find information on maintaining your physical and emotional well being including instructions for, practicing mindfulness, deep breathing, meditating and journaling to reduce stress.

In November, we honor our Veterans and give thanks for our many blessings, it is fitting that also in this month, we, as a nation, recognize the steadfast dedication of Family Caregivers to the health and well being of the Veterans you care for. "
Caregiver Chronicles www.caregiver.va.gov
 

Wednesday, October 31, 2012

In Regard to the Links I List

When deciding which links to put on my blog for your interest, learning and support, I try to find ones that pertain to specific issues that we, as caregivers for our veteran, face.  They range from specific conditions, diseases, relationships, assistance from organizations, support, etc.

One in particular that I've been reading is truly remarkable: armyreservistwife.blogspot.com.  She signs her blog entries as "Uncle Sam's Mistress" (very appropriate!).  She is dealing with a husband who has PTSD (post-traumatic stress disorder) and TBI (traumatic brain injury).  She pulls no punches when describing what her life is like living with someone with these very serious disorders.  In addition, she is a gifted writer.

When you read her posts, if you are dealing with one or both of these issues, I'm sure you'll be able to relate & hopefully it will help you to not feel like you are the only one reacting the way you do.  Perhaps you'll feel compassion, even cry for her, and be very grateful if that isn't what you deal with in regard to your veteran.  I can't imagine living with that every day.  My heart truly goes out to her ~ she is, in all meaning of the phrase ~ "serving her country on the home front".

If you, or someone you know, is taking care of a veteran with one or both of these issues, please take time to click on my link for her blog and/or recommend it to someone.  We all need to know we're not alone with whatever we face in our caregiving role for our veteran.