I didn’t mean for this to become a blog post but because the course of events has been so interesting since I first posted this fact on Twitter and Facebook this morning,  I felt that it was a sign to discuss it.  I originally stated  “I am SO mad at my mother.  Do you think that caregivers have the right to demand good behavior from their aging parent?”

Let me add here that had the bad behavior (extreme rudeness and name-calling) been directed towards me, that I could have more easily let it roll off my back.  But it wasn’t; it was directed at a friend. 

Since that time, I’ve received a multitude of comments, suggestions, sympathies and empathies.  A few people asked whether she had dementia or a condition that would cause altered behavior.  (No, she doesn’t.)  A few stated that we can’t demand; we can only hope for good behavior.  A few related similar experiences. One suggested I read this article on bad behavior by elders.

Then I opened my e-mail and found a meditation that an associate of mine had just created for our membership level entitled “Using Anger as Rocket Fuel for Something that Brings you Great Joy”.  It is a great meditation and caused me to begin to shift my focus this morning.

As I was continuing to catch up with e-mail and social media, I found the video displayed towards the end of this post.  It was shared with me by 2 people (even before they knew of my anger) and because it takes a humorous look at the aging process by a woman who is beginning to age herself,  I wanted to share it with you. (It takes place at a caregiver awards dinner for Home Instead Senior Care so I’d like to add that I’m not affiliated with them in any way.)

So between the comments, the meditation, and the video, I believe that I’m back on track for today, but I will  not tolerate such outbursts from a mother who has no reason to be so rude.

In reality, it just plain sucks to get old.  Because there are so many disappointments in the aging process (decreased hearing and vision, mobility issues, isolation, physicial limitations)  and we push a lot of anger at these situations back because it’s difficult to yell at “not being able to hear” or “to rage about getting tired when climbing stairs,  we displace it onto other things or people. 

The aging process also reminds us that our life may soon be coming to an end and if we are not pleased with how our life has gone so far, or if life has seemed unfair, there may be a lot of anger at life itself.  This type of anger can also be displaced.

So to answer my own question “Do you think that caregivers have the right to demand good behavior from their aging parent”, I would say………..it depends.  And we’ll talk about that more later.

I will talk about anger in a separate article and I will also be doing a series of articles on emotions: anger, guilt, frustration, worry, sadness, etc. so please stay tuned for that.

Vacation For The Caregivers “JUST DO IT”

This is an article written by Greg Pledge, who cares for his mother in Ontario, Canada. 

I am writing this article with hopes that I will reach as many of caregivers out there that read Shelley’s web site. I sincerely hope that the word “Vacation” and the importance of taking one really hits home. Why, you may ask: because it is vital to our survival.  I am a 44 year old man and  have been caring for my Mom for about 8 years. Prior to caring for my Mom, I looked after my father for 2 years with the aid of my Mom until he passed away in Feb 2002.

 Becoming a caregiver is unlike any job you will ever do in your entire life! And it is not a job that comes with a manual.   Perhaps if you work in a health care facility there will be an operations manual but looking after someone at home, especially if it is a family member, or a very good friend is very difficult.  My reason for saying this is that it is very hard to separate yourself from the person you love  while caring for them because it is just not a black or white decision when it comes to providing for them. You have to apply “Tough Love“.

Another important fact is that it’s not a 9-5 job; therefore you can’t just clock out after your 8 hour day. It’s a 24/7 job and if you’re like myself, you give up working and earning a pay cheque to accommodate the needs and daily requirements of the loved one. We do this because we love our parents, sister, brother or very good friend.  It is “Unconditional Love“.  For myself, taking care of my Mom started without any warning. It began gradually prior to my Dad’s passing and than afterwards. It was day to day, week to week and month to year to year. I had to learn all the dos and don’ts of caring for someone you love.  It was on the job training. I had to do a lot of research along the way and thank goodness for the internet and the available resources to access information.

 Unfortunately at that time, Shelley‘s website and caregiver support via face book was not around to my knowledge. So I did what came natural to me.  I asked a lot of questions and attended all doctor and specialist appointments. I even utilized government assisted resources that my Mom could qualify for and got a care assistant that comes in 4 days a week for one hour a day to help with bathing and meal preparations and just general social communication for my Mom.

So many of us we are not perhaps fortunate enough to have a million dollars in our bank accounts, so we have to draw on what resources we have, personally and with the aid of what the government will grant us. Because of my Mom’s pension income which was higher than other pensioners, she did not qualify for government assistance full time aid here in Canada, Ontario. I had to use our own financial resources combined with her pensions. Thank goodness I was able to get some help through an agency here in Canada called the CCAC (Community Care Access Centers). I have a wonderful lady by the name of Mary who comes to our home to help me with some of the daily requirements of caring for my Mom. Together we form a team and I am very grateful for her help. Mary has educated me over these past 5 years and I am so grateful for the emotional support, not just for me but for my Mom, as well.

Now that I have given you a background history to my situation, I will discuss the importance of taking a holiday. Caregivers burn out – very fast!  The reason again for this is that our job is 24/7.  Time management is crucial and every hour of our day needs to be planned out. AND during that day we MUST find sometime to detach, relax and gather strength to continue to do the job. If you are like me, I am sure some of you have families, a husband or wife, and/or children and you have to divide your time as best you can to give of yourself to all the important parts of your life. For me, I have my partner of 5 years and he has been very supportive with my caring for my Mom. He works full time and when he gets home he tries to help me in what ever he can to give me a break. However it has to be said and definitely recognized that being a caregiver will put a tremendous strain on your relationships! And your social life! It is extremely imperative that you take time not only for yourself but for your family, friends etc.   Without them you will break!  And you will collapse.  You will find that without taking time off and going on a vacation, the care you are providing for the one you love will start to suffer, and you may even find yourself starting to resent them. I am being blunt and honest in this article because I am sure we all have felt this way at sometime. It’s so important that you DO NOT feel guiltyor ashamed because it’s natural and totally understandable. When you get to this poin,t it is a clear sign and “RED FLAG” indicating that it’s time for you to take a holiday! You are no good to your family, friends and most importantly to the one you’re caring for, if you are “BURNED OUT”  It took me over 8 years to finally agree with my partner and go on a mini-holiday.  

Fortunately for me, my partner works in the travel industry and he had won a trip to New York City, all expenses paid for hotel accommodations plus some meals and drinks. He won the trip in February of 2010 but the actual date of the trip was not until July 1, 2010. So I had lots of time think about it and prepare. YES! I felt very guilty for sometime and this is very common amongst us caregivers.  But you have to “GET OVER IT” and bring yourself to the conclusion that if you don’t take some time for yourself, you are likely to run the risk of getting sick and ending up in the hospital.  This would end up being even more stressful as you are the “GLUE” to keeping things together and if you’re like me, you run a well ordered and organized care facility in your home. Once you are removed, everything goes to hell in a hand basket, as they say so you MUST take care of yourself FIRST!

Taking a vacation, even if it is just a weekend trip away, will help you in so many ways. In my case, it gave me the ability of clearer insight to the situation I was living in and I was able to get in touch with myself again after so many years.

 When you are caregiver you tend to lose yourself into the situation and forget about who and what your are all about as a person but more importantly a human being and your contribution to your own personal life and being able to socially interact with society.  While I was away, I had forgotten just how much I enjoyed meeting new people and to laugh again and be carefree!  I had forgotten what it was like to relax and not feel like I was on a 24/7 call button “RED ALERT”.  I was finally able to “CRY.”  Yes, I had bottled up so many emotions inside over the years and just could not let them out!  And one night while sitting on the deck of our cabin with my partner after spending a fantastic day together and meeting new people, it hit me!  What hit me you ask?  All the emotions, anger, frustrations ect… because I just could not let my Mother see these emotions as I did not want to upset her. I cried for about an hour.  I felt horrible for my partner but he actually was glad to see me let it all out. I began to re-connect back to ME!  And then from within, the emergence of my being started to surface.

Over the years I had doubted if I was truly doing the right thing by caring for my Mom at home. And was I truly doing everything I possibly could to maintain her quality of life and dignity. I was able to answer yes to some of the questions but had to give more serious thought to the latter of my queries.

After 4 days, I had been able to re-charge and become more focused, giving myself permission to truly answer my questions and concerns without guilt. I had made sure that my Mom was well looked after while we where gone. Our good friend was staying in our home to be there 24/7 with my Mom. Our neighbours of over 30 years were very willing to be there to help anytime should my Mom call them.  Judy, my neighbour, had been a registered nurse for many years so I knew Mom was in very good hands. However, you do need to br prepared for what I call the “Caregivers Aftermath”.

Even through all your good planning and excellent care instructions for your temporary caregivers, things can happen. In my case my Mom suffered a major panic attack (she suffers from the health condition known as “GAD” General Anxiety Disorder).  She had been put on anti-depressants for a about 8 weeks prior to me leaving.  The doctor said that this would help my Mom with her GAD. I had researched a lot of medical websites and the general consensuses was treatment with anti-depressants.  In addition to the treatment plan, she was taking Clonazepam but Mom had been on this medication for over 40 years so it was not working like it had in years prior but because she had been on it so long she could not just come off it right away. We had been trying to slowly take her off of it under the doctors supervision.  Since this was my first time  ever going away, it impacted my Mom with very high anxiety. She got scared and became panic stricken, causing her to have sever palpitations which mimic the feeling of a heart attack.

When I got home I was immediately briefed by everyone, and concerns and questions where fired at me regarding my Moms state of mind and care. I had to call a general meeting with our friend and my neighbours to talk to them about the state of my Moms GAD and all that I have done over the past year to get her treatment and look into possible medications and assure them I had the situation under control.

After I had done the damage control and was able to assure all involved everything was okay, I then had to turn to my Mom and address her issues. While I was gone my Mom had two falls which was completely a surprise since my Mom had not had any falls for over 3 years, and I certainly would have not gone away had this been happening. I made an appointment with her doctor prior to me going away so should something  happen, I had the appointment there to be examined. We had an MRI scheduled a few months prior to the trip as my doctor wanted to see how my Moms back was healing and if there where any further progressions from previous injuries from the past. My Mom was in a lot of pain and it was very apparent that she was much weaker in her legs since I had gone on my holiday.  It took me from July 5 up to now to get things back to a somewhat orderly manner.  However, something did come of this trip and even though this article is about the importance of going on a holiday for yourself and how you need the break in order to protect your health, this article will become a two part article.  Look for the 2nd part of it in the near future.

Because while I was caring for Mom over the past 8 years, I had become so absorbed into her well-being and daily needs, it became a routine which just did not allow me to think clearly and logically about the health care quality for Mom. 

Now that I’ve  had the chance to get away and be removed from the situation by taking a short vacation and clearly my mind, I can see that I/we were doing more harm than good by keeping my Mom in our home and trying to care for her.  Sometimes you end up putting the person you love and care for at a higher risk of injury and/or in some way being an enabler and cutting short their possible longevity by socially isolating them. This was the case with my Mom.  She did not want to get involved with outside community workshops or senior groups. She would just rather sit in her chair and watch her TV and do nothing but complain about the things she could no longer do!

As her son and caregiver it finally came upon me to face that difficult cross road. “Is now that right time for a senior home”?

I hope this article has helped some other caregivers and given insight and provided you with some facts and the importance of doing what is right for you.  One: taking the holiday but also gaining clarity of thought so you can revaluate your care provider situation and look at it with a fresh mind and see it for what it may truly be either good or perhaps not so good.

God Bless and stay tuned for my follow up article on “When is it time for your loved one to go into a senior care facility/ home?”

Sincerely,

Greg

Greg Pledge is a writer and caregiver for his mother in Ontario, Canada.

My lawyer was scheduled to attend this court hearing with me and I was also surprised (although I shouldn’t have been) that my father’s lawyer also attended the proceedings.  While I have absolutely nothing against my father’s lawyer (she’s a lovely person and all elders should have their own representation in cases of guardianship and conservatorship), thoughts of  ”I wonder how much additional money this will cost my father’s estate” rang in my head.

You see, once upon a time, families were able to make decisions for their elders without requiring legal representation and all the hoopla and expense that goes with it.  But now, because of privacy laws and because of people taking advantage of our elders, durable powers of attorney for both health and financial affairs, guardianships and conservatorships are becoming more necessary.

My father’s conservatorship became necessary after his dementia increased and  he agreed to sell his lakeside home in Canada for $100,000.oo less than market value.  If you’ve followed this blog for any length of time, you may also remember that he bought a truck while I was at work and had it delivered and later that month called 911 because of concerns over the NASA astronauts in space.  But this conservatorship has cost his estate a few thousand dollars .  Even after his death, there remain legal expenses.

But I think what is really concerning me now is my mother.  As I wrote recently, she is having trouble receiving her social security payments since she has moved to Canada.  At first they told her, it was because they didn’t have her new banking information.  Just yesterday they told her that she doesn’t qualify because she moved out of the country!  I don’t believe that because both she and my father contributed to the social security system in the United States for over 40 years.  But…………..can I talk to them about it?  Nooooooooooooo.  Privacy laws will not allow it.  Please see my post on HIIPA laws  to read more about this.

So now some sort of power of attorney will be necessary  for one of my sisters or myself to help my mother figure this whole mess out.  Meanwhile, she receives no social security payments.  How much will THIS cost?  How much time will it take?  Because of my experiences with my father, I know the proper paperwork to file, but how many families do not?  How many families cannot afford to add yet another cost to their caregiving budget.

Even my own attorney said that this inability to help aging parents without legal paperwork is a waste of time, energy and money for all concerned. 

Something must change!

Look for a family practitioner or general practice physician to be the primary care physician for your loved one. General and family practitioners are trained to treat all aspects of a person’s health and well-being even though they have not specialized in a specific field. They treat the elderly as well as newborns, children and adults for everything from a splinter to a more serious illness.

Health Insurance Coverage

Choosing a doctor can be based upon several factors. One of the first aspects to look at is whether or not the patient’s health coverage is accepted by the physician being considered.  Most physicians will accept Medicare but it’s important to determine whether or not they will accept Medicaid and/or the supplemental policy if one is available.  If the doctor will accept the health coverage, the next thing to look at is accessibility.

Location and Accessibility

It is important to choose a doctor whose office is located close enough to be easily accessed for routine care and emergencies. If the elderly loved one is homebound, a physician who understands this and is willing to work around this detail to provide care is ideal.

Physicians can order home health nurses to draw blood, administer injections, take vitals signs and other basic medical procedures then report to the doctor. These procedures would normally be done at the doctor’s office, but when dealing with a homebound patient, getting them into the office may be a problem.

In addition, when transporting an elderly homebound loved one, distance to the doctor’s office can play a part in the convenience of the location. Determine if the time spent driving and the distance to and from a doctor’s office makes the doctor in question an acceptable choice for your loved one’s needs. If the doctor requires that your loved one must been seen at the office frequently, then distance can be an important factor when choosing the physician.

Office Hours

When choosing a doctor there are a few important questions about the doctor’s schedule that you should ask. What kind of office hours does the doctor hold? Do they have evening or weekend hours? How can you get in touch with them when the office is closed? Are the physicians who cover the “on-call” hours acceptible to you?

Hospital Choices

Most doctors have privileges at specific hospitals. When choosing a doctor, it is important to find out which hospital or hospitals the doctor has privileges at. This is the same hospital the patient would go to for emergency care, tests and surgeries in most cases. The size, location and reputation of the hospital may play a large role in your decision to choose or not choose a specific doctor.  Some towns and cities have specialty hospitals for certain conditions.  If your loved one has a condition that is treated by one of these specialty hospitals, it is important to determine if the primary physician has priviledges there.

Personality

Even the most qualified and credentialed doctor may not be the best choice for your loved one’s personal physician if their personality clashes with yours. You’ll probably want to choose a doctor that you genuinely like and feel comfortable with. Remember that you will need to be working closely with this person to advocate for the best health care for your loved one.  Imagine my surprise when I asked my father’s physician if he might be discharged in the afternoon only to hear him say “What part of HE WILL BE DISCHARGED TOMORROW MORNING did you not understand?”  However, there are also surgeons that I have worked with in the past who had terrible bed-side manners yet they are the ones with whom I would have trusted my life.

Choose a doctor who will take the time to speak with you as you advocate for your loved one’s health care. The doctor should be willing to listen to your concerns and answer your questions to your satisfaction. Remember, you are hiring them and paying them for their time.  The days of the primadonna physician OUGHT to be over.

Another consideration is the physician’s staff.

Do you like the physician’s staff? Are the doctor’s employees personable, respectful and pleasant? If you find receptionists, nurses and other staff members to be rude, then perhaps you should consider other physicians. These are the people you will be working with to schedule appointments, update prescriptions and access patient information. If you find them difficult to work with initially, it might improve over time but don’t expect it to automatically occur.

Ask the doctor if they have a Family Nurse Practitioner or a Physician’s Assistant in practice with them. These medical professionals assist doctors in caring for patients in many private practices. Decide if this is acceptable to you for your loved one’s care. If not, then you may need to continue looking or specify in the patient records that care must be provided by the doctor.  Keep in mind though that Nurse Practitioners and Physician’s Assistants generally have more time to spend with the patient and are trained to be patient advocates.  They are also often more accessible.

Making the Choice

After taking all of these factors into consideration, decide which physician you would like to care for your loved one. Schedule a new patient appointment and commit to making the new relationship work.

It wasn’t until I began looking at them as a means of respite care placement for my father that I learned of their costs.  In my father’s case, the daily respite cost was $220 but the monthly cost would have been over $5000.00 for a semi-private room.  This rate did not include medications or transportation to medical appointments. (Rates seem to vary between $4000.00 and $7500.00 per month depending upon the residence.)   None of these facilities accepted Medi-Care and private insurances don’t cover such things.  A couple of them stated that if a person were 2 guarantee private payment for 3 years, then they would not “evict” the resident once their money was gone.  At that time, they would then accept Medicaid reimbursement. 

Recently I have read several articles about assisted living facilities being available mostly in areas of higher income.  In areas of lower income, rural areas and in areas where minorities live (and all 3 of these are equivalent to areas of lower mean income), there are less available assisted living facilities.

In a study at Brown University, a conclusion was made that hispanics would be more likely to use nursing homes than assisted living facilities because they at more likely to be at the lower end of the socio economic scale and did not have the money.  Because of lack of money, they were more likely to be placed in nursing homes with less than desirable facilities, receiving less than adequate care which sent them back to the hospital and began a downward spiral.

I think that another reason that there are fewer assisted living facilities in areas where hispanics live is that their culture has the tradition of elder care being handled by the adult children of the family in a home setting.  My best friend’s mother took care of both her mother and aunt in her home until she was physically unable to do so anymore.

Assisted living facilities vary tremendously; they can contain a myriad of amenities and consist of private apartments with a nurse on duty 24 hours a day or at the other end of the spectrum, they can be closer to a nursing home environment with semi-private areas that consist of 2 beds in a room with a television set.

Assisted living homes are not the right choice for everyone.  Unless a facility has a special unit  (and many are opting to include these), dementia patients should not be placed there.  Sometimes patients have medical conditions that are too complicated for this type of living arrangement, as well.

Nursing homes don’t have much variation.  In MY words, they are simply sad places where lonely people live out their final days. 

In between, there are skilled nursing facilities, but in most instances, these are temporary placements until the “patient” can either be returned home or to a more permanent placement in a different facility.

I’m concerned about what will happen when the aging population runs out of money to pay for these expensive assisted living homes.  At between $ 50,000 and $90,000 per year, who will be able to live there long?  Our elders were a little more prepared but I don’t believe that the baby boomer generation has prepared themselves well enough to be able to cover even a year of living there.  And now that many boomers are upside down on their mortgages, selling their home won’t help to pay for that care.  Not many of us have long term care insurance either. (And in reality, how can long term care insurance continue to exist when almost ALL of us will need it at some point?)

I also think that with health reform, more families are going to be responsible for the care of their elders.  Hospitals will discharge elder patients sooner and before they are able to care for themselves.  This is happening even now !  I literally had to beg that my father be admitted to help remove the 12 pounds of fluid that had accumulated in his legs due to congestive heart failure.  Sure…..they’ll put a defibrillator in an 86 year old man with dementia (because insurance will pay for THAT)  but when it comes to managing the care of that man post procedure, they’ll leave it to the family.   (And they won’t discuss end-of-life care…but that’s a whole other issue.)

Already, a big portion (17% of employees in south Florida, according to a recent study)* are having to leave the work force in order to care for their aging loved ones and another 15% have cut their hours. 

During the past year, as we have experienced a financial crisis, more family members are gathering together under one roof in order to make ends meet.  Do you think that we will return to the days of Leave it to Beaver and Father Knows Best where Moms become the caregivers for the family while Dads return to providing the financial contribution?

In a study reported by Deborah B. Gentry, it was determined that nearly 40% of adult children acting as caregivers had serious conflicts with one or more siblings regarding the care of their parents.  Many times, this was due to the lack of participation of one of the siblings, arguements over finances or disagreements on where Mom or Dad should live.  With a help of a mediator, these issues can be sorted out in a private, non-threatening setting where the family (including the parents) meets together.

Eldercare mediators have taken classes in this type of mediation.  They may be nurses, social workers, gerontologists or they may also be attorneys themselves.  (If they are attorneys, they do not practice law during the  mediation service.)

What does an eldercare mediator do?

• they are a neutral 3 rd party who helps with decision-making processes
• they help clear up misunderstandings within the family by knowing the right questions to ask
• they provide for expression of feelings and yet, keep the family on tract
• they help the family heal hurts, avoid blame and self-pity
• they help the family consider as many options as possible
• they provide for future modification of the decisions made

Mediators do NOT:

• Make any of the decisions themselves
• Provide family therapy
• Practice law

Who is involved in the meeting?

• Parents and siblings should be present.  The meeting may also include spouses, grandchildren, other close relatives, close family friends, caregivers, medical providers, pastoral leaders and lawyers.

What is discussed at the meeting?

This is up to the family members but some ideas for discussion include living arrangements and possible assistance for the parent(s), driving ability, end-of-life provisions, financial concerns, trust and estate issues, division of responsibility amongst the siblings, etc.

The advantages of hiring a mediator are that parents (or spouse) must give permission for the meeting to take place, thereby maintaining their dignity and autonomy by being involved as much as possible.  Also, if help is needed, financial and task responsibilities can be divided up equally among the children (siblings) or a care contract for a sibling that volunteers to be the primary caregiver can be discussed.  Obstacles are more easily overcome when using a mediator who can keep the family focused on the goal of caring for the parent (or spouse) in the best possible way.  Family relationships are also improved because everyone is kept in the loop.  Those siblings who are unable to attend due to physical constraints can participate by telephone or even on the internet.

The cost of an eldercare mediator is about $100.00 – $300.00 per hour but is a good investment in maintaining or building family unity and working to provide a good outcome for your aging parent(s) or loved ones.

Eldercare mediators can be found through state and local Area Agencies on Aging, attorneys specializing in elder law, geriatric care managers, Alzheimer’s Association (especially support groups) and the health department.

Ironically, I know exactly what I didn’t know in my dream.  I know that I have a lot of guilt over the circumstances of his death .  He wasn’t treated well at the hospital; I HATED seeing him propped up in a chair.  I wasn’t there when he passed away in the middle of the night.  Nobody was.  I wish I could change that and therefore I go over and over it in my mind, trying to rewrite the past but realizing that it is impossible to do so. 

According to Dr. Vickie Rackner, author and keynote speaker, “Guilt is a pain that tells you there’s a mismatch between the person you’d like to be and the person you were in that moment.”  At “that moment”, I would have liked to have been the person who stayed at the bedside 24/7 and the person who KNEW to argue for hospice care and kept my father at home .  I regret that I wasn’t.

Dr. Rackner also states that regret and guilt are distant cousins.  Certainly they are related because regret often leads to guilt.

In the book, “The Emotional survival Guide for Caregivers” by Alexis Abramson, Barry J. Jacobs, PsyD states that when a loved one dies, guilt is the 2nd most predominant feeling in a former caregivers’ experience.  There is guilt that they didn’t do enough, guilt that they are now “free” of the burden of caregiving, guilt that they have their own life back.  This guilt can last 6 months or even longer. It comes and goes but is eventually replaced by the knowledge that the disease process and God’s plan were the biggest factors overall.

Guilt is a part of all aspects of caregiving.  Caregivers are often overburdened and torn between what they need to accomplish for their employer, their spouse, their family and their care recipient.  What was NOT accomplished often leads to feelings of guilt. ( I missed the soccer game; I missed spending quiet time with my spouse; I ran in, dropped off groceries, and ran out of my Mother’s house without stopping to chat at length.)  When I was caregiving for my father, I would often feel bad that I didn’t make the time to sit with him and play cribbage or watch T.V. as often as he wished I would.  There was just too much to do.  We DID play Cribbage at least 2 hours almost every night but as he always said “I have all day !”  He did; I didn’t.

Anger can also lead to feelings of guilt.  We feel badly about being angry that we are stressed, overwhelmed, over-worked, tired, etc., so then we feel guilty which leads to anger back to guilt and more anger….a never-ending circle.  Guilt will also cause us not to take care of ourselves, perhaps because we believe we don’t deserve the care  – which of course, will lead to anger, to guilt…and you get the picture.

In order to get rid of the guilt, it is important to acknowledge that feelings are JUST feelings, nothing more.  You must forgive yourself for your imperfections.  You are only human and no human is perfect.

While you cannot change events or all of the activities in your caregiving role, you CAN change your feelings about them and you may be able to change some of the actual activities themselves.  For instance, if you are finding it difficult to have any quality time with your care recipient because you are too busy doing chores, hire some of them out.  (If expense is a problem, The Area Agency on Aging has a scholarship program for a certain number of hours per month where caregivers can do light housework).  (Meals on Wheels may be available in your area to deliver some hot food to your loved one or perhaps your church may have a program.) When you are able to spend some time with your loved one, you can get to (RE)know them better, and enjoy them.

In the last couple of years, there has been a lot of talk surrounding the book The Secret and the laws of attraction.  Part of that philosophy involves a change in the way you look at the world and your role in it.  You CAN change the way you perceive your caregiving role from one of burden to one of gratitude for the experience.  Changing your perception will cause you to (consciously or subconsciously) change your actions in order to align the two with each other.

You must remember that it is absolutely imperative to take care of yourself and to continue to enjoy life.  Do not feel guilty about those things that you do just for yourself (I’m speaking in moderation, of course).  They will make you a happier person to be around. Do not become a matyr; it does nobody any good. 

So how does this all relate to my dream and my feelings of guilt ?  As I thought it through, I decided that I did the best that I could with the knowledge that I had at the time, so I forgave myself .  I had cared for my father in my home up until the last week and a half of his life and I am proud and grateful that I was able to do that.

With the holidays approaching, I wanted to mention something else that Dr. Vicky Rackner stated.  “Consider giving yourself a holiday gift.  Forgive yourself for one choice that brought you guilt.  Forgive one other person for one action that disappointed you.  Forgive the world for the bolt of unfairness that stood between you and an old dream.”

I hope that you can do that.

Registration for the ceremony was offered several weeks ago, but no one was turned away for not having registered previously.  Upon arriving, we were given the chance to choose an ornament to place on the Christmas tree in honor of the loved one being remembered and a marker to write on it.  There were 2 different shapes of ornaments: round and heart shaped.  There was also an assortment of colors from which to choose.  I hadn’t thought of it before, but the colors would be very important to some people, for instance, my nephew passed at the tender age of 6 (hit by a car) and his very favorite color was green. His siblings wrote messages on green balloons at his funeral and “sent them up to him”.

I chose a red heart for my father ( I think because my heart is still bleeding for him) and a white heart with sparkly green swirls for my nephew.

After enjoying a wonderful brunch in the foyer of the church, we went into the worship area for prayers, hymns and a presentation by author and grief support facilitator, Joanne Petrie.  She was a wonderful speaker and stressed that grief may come not only from the loss of a person, but the loss of a situation – divorce, the loss of a job, the loss of a home, (and I’ll add, in the case of many caregivers, the loss of freedom or the life once lived).  She also stated that recovering from grief does not put you back to “normal” but leads you to accept a “new normal”.  How profound.

After the presentation, there was another song and then the names of all loved ones represented on this day were read one by one.  As the name was read, the family members came up to the tree and placed the ornament there.  Many stood for a moment of silence or placed a kiss on the ornament.  Many cried.

The ceremony ended in prayer for those we had lost and for those who will carry on.  Hugs abounded. 

I am now a fan of Ceremonies of Remembrance.  It was a wonderful experience and something that a family member or friend could do each year without traveling to a graveside which might be a long distance away.  I hope that many churches, temples and synagogues will adopt this kind of ceremony if they have not already done so.

I must add that the ornaments were given back to the family members at the end of the ceremony and now my father’s ornament rests on our tree at home in a place of honor.  (I will send my nephew’s ornament to my sister.)

I also wanted to introduce you to the QAS website because they have some great teaching articles about vitamin K (a vitamin that should be limited when receiving Coumadin therapy) and also about some other medications that should be avoided during therapy.  He will discuss those more in later posts.

So without further adieu……

There is good news for patients taking Coumadin^® (warfarin)!

The good news for patients, family members and those who care for a loved-one taking Coumadin® (warfarin) came March 19, 2008 when Medicare announced coverage for patients to test their blood in the privacy of their home. The policy extends benefits to Medicare beneficiaries who have been taking warfarin for at least 90 days for any of the following reasons: atrial fibrillation, mechanical heart valve replacement, or venous thromboembolism (DVT/ PE).  

What is patient self-testing?

Patient self-testing allows patients taking warfarin to test their blood at home with a small finger-stick sample of blood – not too different for diabetic patients who check their blood for insulin levels.

Coumadin^® is a medication that requires a small sample of blood to measure the effect of prolonging the bleeding time designed to prevent dangerous blood clot development. Medicare and many private insurance company’s provide reimbursement for up to, but not more frequent, than weekly home testing to reduce bleeding risks.

Home INR testing however, requires a physician’s prescription for one of the FDA-approved, small, hand-held monitors and for testing supplies. The monitor and testing supplies are not available in retail pharmacies but can be obtained through specialty distributors such as Quality Assured Services, Inc. (QAS).  QAS is a Medicare and private insurance company that distributes, trains, and communicates patient’s home test results to the patient’s physicians.   

Who is a candidate for home INR testing?

Patients who are motivated, with a desire to improve their control of warfarin and reducing the risk of side effects are good candidates for home INR testing. The test is simple to perform by the patient or a caregiver.

How home INR testing works

Home INR testing enables patients to test more frequently than monthly, in the comfort of their home, resulting in better warfarin control and therefore improved safety. Home testing results may be phoned in through a secure 800# provided through the distributor of the monitor. Testing strips are shipped directly to the patient’s home at no additional charge.

Weekly testing is a testing frequency that has been proven superior in clinical studies. Testing weekly evaluates the effect of patients: diet, overall health, metabolism of Coumadin^® and interaction of other medications. Patients or care providers simply phone each home test result into their physician’s office or online service.

How to get started

Patients or caregivers can have many of their questions answered by visiting home INR testing. Specialty pharmacy providers such as QAS, Inc. provide full-service assistance including insurance, clinical and technical support at no charge to the patient.