Caregiving Monday Musings

Caregiving is both a loving and a draining experience.

Love can wax and wane and the caregiving experience feels different depending on your phase.

Being thoughtfully pensive is different than being mired in a recurring mental spiral.

Fairness has varying definitions depending on your perspective; learn to raise or lower your expectations depending on your mental outlook of the day. Life is not always fair...

Peers and friends who “get it” are priceless.  It is lonely and isolating to walk this path alone, so please don’t!

As much as possible, give patient, educated responses when coping with the muddle of bureaucracy.  You’ll sleep better when you're less agitated.

Find your “anchor” (a friend, your faith, your journal, your dearest pet…) or a quiet place and give yourself permission to hold still when needed.  Your work will wait.

Finally, know the people that care for YOU in your life and lean on them when necessary. They fervently want to help you.

You matter so much to those that depend on you.  Do you really need to wonder why you’re tired? 

Please be kind to yourself.  You do a huge job, and you’re not going to be perfect, but you are going to do your best.  

You always do.

Caregivers, you are a gift to those you support.

Blessings to you,

Linda Kreter & the VeteranCaregiver Team

The Caregiver Cycle - Rinse & Repeat Only

Greetings,

After years of working with Caregivers, warriors, and families, a particular cycle of emotional health of the Caregiver has been noted.  We call these Caregiver Cycles, and we’ll give you only one visual, though many others would work as well.

There is the Cycle 1, the strong cycle when we feel put together, relatively well-informed, there is a decent communication pattern with our warrior’s care team, and as the Caregiver, you feel quite positive.  Your phone calls are returned, you see and feel progress, and you feel HOPE.  One vital thing about Hope is that it makes you mentally and emotional ready and willing to keep on working to improve your quality of life and that of your family. This is a good place to be!

Because caregiving is seldom a linear process, there are also times that may feel less accomplished and less effective.  This is Cycle 2.  Though you are still optimistic, you’re noticing that you are not making as much progress as before, there is a backslide in your warrior’s or your forward motion, or you’ve hit a new hurdle to overcome.  The longer you’ve been a caregiver, it seems that these periods wear you down more each time you experience them.  They also feel longer to you if you’re battling something for the second, tenth, or fiftieth time.  This is a time of concern for yourself and your family, isn’t it? You are exhausted, and somehow that makes each unreturned phone call or cancelled appointment feel worse.  You may be feeling higher anxiety, or less capability in managing the many details of caregiving.  In other words, you’ve lost some of yourself in the process, you're leaning, and pieces of you are missing.

Then there are those days when you’re not sure you can get out of bed to face another day, or you can’t sleep because your mind is struggling for solutions.  This is the much dreaded Cycle 3. You feel depleted, and search mightily for that spark of light you know you have within, but where is it?  You put one foot in front of the other, but this is a desperate/invisible/spent phase of time.  Please seek help when you feel this way.  Others have been here too, and your work is SO critical that you must stay present and care-seeking.  Reach out to your doctors, friends, and family – you WILL get through this time, but don’t try to do it alone.  We all need somewhere to lean, so reach out for assistance (therapists, pastors, helplines, doctors).

The goal is to keep the cycles to the TWO levels, and construct supports to avoid the third.  Let’s work together to support, guide, and reach out to keep each other strong, okay?  Remember, the shampoo directions give you two cycles only.  Strive for Rinse and Repeat – and avoid that third cycle altogether. 

With care,

Linda Kreter & the VeteranCaregiver Team

The Cascade Potential of Suicide

*Note: all names and identifiers have been changed, but this story is true.

His name was Michael.  He was in the wrong place at the wrong time when the shooter at Ft. Hood created mayhem, horror, and fear.  His friends knew that the incident, deemed “workplace violence” was never far from his mind, but they thought he was okay.  He was not.  He committed suicide this month.  This did not make the newspapers except in a small obituary, but it sent a resounding echo of despair to his circle of friends.

One friend of his, Jim, reacted very strongly to the news of the suicide.  He became very angry.  He became physically violent toward his wife.  He vehemently threatened systematic destruction of all of his VA doctors (while in the halls of his local VA), and he expressed suicidal intentions.   In each instance, his local VA suicide prevention coordinator was unable to provide help because Jim was not “actively suicidal”.  The Caregiver spoke twice with  the suicide prevention psychologist who said he could not do anything without an in-the-moment attempt.  When saying it makes no sense not to throw a float to a drowning man, his wife said this, “it seems that until you are underwater, going down for the last time, that no one can actually do anything”.

One week later, after two visits to the local ER, (while his wife made careful safety contingency plans for herself), the situation worsened.  Jim took a household knife into the bathroom with him  and attempted suicide. (All firearms had long been removed from the household). When his wife broke into the bathroom, he threatened her with the knife and said he would first kill her, then himself.  Through a near-miracle, she was able to get him to the local ER and began anew to get him VA psychiatric care.  Many calls (some with outside assistance and advocacy) were made to the VA Crisis Line.  Crisis Line recommendations to obtain local VA help went to unanswered voicemail... 

With great compassion but also frustration, it seemed that most everyone’s hands were tied in some way or another, and the hours crept by.  Finally the VA said it would admit Jim, but his wife would have to drive him nearly two hours to the facility – which under the circumstances was potentially too dangerous.  Eventually into the wee hours, the private hospital moved him to a nearby psychiatric facility since no safe transport could be arranged to the VA.  He remains there today, awaiting a private PTSD program.

There are gaps in any system.  However, the current issue is the lack of follow-up by the local VA including his case manager, the suicide prevention coordinator, and the social work office.  The Caregiver is exhausted, emotionally spent, and has no Caregiver Support Coordinator despite being in the National Caregiver Program. They have communicated their situation to leadership at VA for two years.  These at-risk veterans and their families need consistent follow-up after a suicide attempt, and the care gaps back-filled.  There are policies in place to aid in care and recovery.  But – it doesn’t always happen as written.

Please be aware of your fellow veterans and families.  Be aware that the suicide of a friend may create abrupt behavioral changes in your veteran, and in the worst case, lead to another suicide.  Know that long-term frustrations can suddenly spill over and create volatile situations.  And, always have the number of the Crisis Line, an advocate, and a personal support person if this happens to you.  Friends and social media can spread word of suicide in seconds, and information may be wrong, yet the actions some take can be irreversible.

When in doubt, please reach out! And, as caregivers, remember this:  the life you save may be your own.

Blessings and care,

Linda Kreter & the VeteranCaregiver Team

Winter Blahs!

Over the past few weeks I have spoken to a number of families who seem to be struggling in many ways, just to deal with day-to-day life.  One family had multiple health problems with many medical appointments, another had a death which required an out of state trip. Even in my own family we have had various depressing problems.

I went to have coffee with a good friend and I was talking to her about life in general getting harder to deal with.  She looked at me with great seriousness and told me I had caught the Winter Blahs. I laughed thinking she was joking. Well, in part she was but she was also deadly serious.  This time of year is often hardest for families who are caregiving. Getting someone in a wheelchair to hospital appointments can be a nightmare in bad weather. Snow, icy roads and freezing fog combine to make any driving stressful.  Multiple illness in a household causes more stress.  Children can be cooped up in the house with few ways to get rid of excess energy.

I have been trying to think of ways, just small ways, to help get through this part of the year.  For one thing the days of clouds and low light really depresses me so I have switched to full spectrum lights in many parts of my house, especially the lights I use mostly.

I try to find one thing each day to look forward to for myself.  It can be 15 minutes with a good book, a quick manicure or planning my garden for when the spring comes.

 If I have things to do that I really do not want to deal with, I try and do those early in the day if I can. That way they are not nagging at me for hours.

I  get outside in the fresh air even if it is just for a few moments.  I look for joy in small things; an insect creeping up a leaf or a pattern in the clouds (which was always a game when I was a kid). I also remind myself that winter is not going to last and that the sniffles and fog and horrid road trips will be gone soon.

 I get exercise of some sort even if it is with the Wii or the stair stepper. I'll see if I can fit in a new project; being creative is a good cure for the Blahs. Knitting, painting, cooking or sewing are all productive and you can see the results of your work. Right now I am trying to grow some fresh herbs in pots on the window ledge.

Above all the support of friends and family helps. Being stuck together in a small space can make all of us edgy, but  if you can get the family involved with a little planning you can chase away these Winter Blahs.

Good Ripples

When I was very small I remember a neighbor coming to our house one day. Her name was Miss Thomas. I don't think my mother knew her well but she had a book for me. It was called The Mystery of Hallowdene Farm.  I think it must have been hers when she was a child because it was printed about 1920.It was just a gentle story for girls and I still have the book among my others.  Every time I look at that worn book I remember Miss Thomas and her one visit to our house.
My point here? It makes me remember how small things can affect others long after they might otherwise be forgotten and it is the small things that make up our day-today existence.

I see my life-actions as a series of ripples, like a stone thrown into a pool. The ripples move out, sometimes they mesh with other ripples and change direction. Sometimes they travel a long distance. We may never know what effect our ripples have. If we send out ripples of caring, love, compassion and understanding, these good ripples may have an effect that we are unaware of, or may never know about. That does not matter. When I smile at a stranger, allow someone ahead of me in the grocery line, say a cheerful word to a grocery store clerk or in other ways bring love and light to the people around me, I am sending out good ripples.
I wonder if a good ripple would have made any difference in the life of the persons who have wielded guns in this past week and taken so many lives.  We are unable to know, but this does not stop me trying to send out all the good ripples I can. I don't know if it would stop a person with murder in his heart. I don’t know if it would help a suicidal person stop and think before committing the act. I do know that I have to try.
The events of this past week are going to with us for a very long time. I cannot think there can be many people in the US who are not appalled by these recent shootings.  It does make me reflect  on the fact that we tend to ignore the small things in our lives.  Just think how good life could be if we all made an effort to send out those good ripples. Best of all it does not cost a thing.
Wishing you all a Blessed Holiday Season.

The Basics of Help ...

Greetings, friends,

For many of you, the following information will be basic and instinctive to you.  However, recently we’ve received 35 calls about how to navigate the medical or legislative system, and we thought the following guidance might be helpful.

What do I do when I need caregiver help?

If you are already in the National Caregiver Program, contact your Caregiver Support Coordinator (CSC) at your local VA medical center.  If s/he is not in, ask for the alternate, and leave a voicemail.  It’s a good idea to also follow-up with an email, and their email can usually be found through an Internet search.  You can ask for the email address, and if it’s not forthcoming, ask who else can help you.

If you’re not in the Caregiver Program, you can still use the Caregiver Support Line and request help and guidance.  If your issue is outside the responsibilities of the CSC, then ask who you should be directed to for problem resolution.  It will likely be someone else in the Social Work Office. 

What do I do when I need help with my Veteran’s medical care?

If you have already spoken with your primary care physician, or in the case of mental health, the psychologist, we suggest contacting various VA advocates.  If your veteran is an OIF/OEF/OND veteran, there is a specific OIF/OEF Coordinator, whose name may be found with an Internet search, a VA website search, or by calling your local VA medical center.  They are often able to cut through issues very simply for you.

If the issue relates to a disagreement over care or other conflict, you would contact the VA Patient Advocate at your local VA.  This person may be found on the VA website, through an Internet search or by calling.  If there is a formal report or complaint to make, ask for the proper forms and be sure to follow all the steps directed so that you will find resolution.  You may need to be quite persistent, and you will need to judge the seriousness of your issue.

What do I do if I need help understanding VA process (paperwork, fee base, etc.)?

The Internet is an excellent source of information, but it may be a huge undertaking to find out the nugget of information needed.  Obtain one of the VA Handbooks on Benefits (you can download it or obtain a hard copy at your local VA) to find out who to talk with for specific needs.  

Why use a VSO?

We also highly recommend contacting one of the chartered Veterans Service Organizations (VSO’s) such as AmVets, Vietnam Vets of America, DAV, the Legion and others.  You can find a list on the va.gov website.  It is highly recommended that you use an organization to help you since VA benefits and processes change with the legislation and it can be a daunting task keeping up with the changes.

The importance of peers is...

Ask your fellow caregivers.  Your peers often have great experiences to share, so post here, write to your friends, and seek out others locally who can provide you practical information.  Seek out others while at the VA and absorb all you can; what you learn will either help you, or others in the future.

This is a starting point...

Linda Kreter & the VeteranCaregiver Team

Blessings and Gratitude on Veterans Day 2012

Greetings on this Veterans Day 2012,

Our heartfelt thanks to our Veterans today  -- and their entire extended group of family and friends.  We trust that you know that we treat each and every day as Veterans Day, but on this one day set aside each year, we give you special thanks.

We also specifically give thanks to the Caregivers of our wounded, ill, and injured veterans.  We thank the children who grow up very quickly and often also bear the invisible wounds of war with their parents.  We thank parents who care for their adult children and for siblings, extended family and friends who do the same.  The challenges you meet and the way you keep your faces turned to the light mean so much to this land.

Every day the flag flies over the land of the free, it is because of the actions and valor of the brave.  We love our country, and we honor you today with an extra measure of love and care.

God bless you,

Linda and the Veterancaregiver Team