Getting By with a Little Help……

735910_64656392Many people benefit from products known as assistive devices in the medical equipment world.  These are products that help people continue to be independent in their activities of daily living.  They allow people with physical limitations to feed, bathe and dress themselves, do things around the house, as well as move from place to place.  All kinds of activities can be maintained through the accommodations made with assistive devices.

We are all familiar with the most obvious ones like canes, walkers, wheelchairs and scooters.  And many of you may also have seen raised toilet seats and grab bars.  But there are also all kinds of reachers, grabbers, extenders and grippers that can modify activities such as pulling on your socks, reaching your lower legs and feet in the shower, grasping your toothbrush and holding onto your utensils.  These devices not only create a way to complete a task but also, often, a safer way to do them.

Simple things like grab bars, raised toilet seats and shower chairs can make bathroom activities safer and easier to do.  Many items you can find on your own and purchase from a medical supply store.  You’ll even find a basic selection of these types of items in drug stores and the other stores you frequent.

However, if you know that your loved one needs some assistance but are unsure of what would really help the most, you might want to consider asking the physician for an order for a Physical Therapy and/or Occupational Therapy assessment.  The therapist can work with you and your loved one to identify the deficits, maximize their ability and make recommendations about the products that might be helpful as well as work with them on how to use the device!

Also remember that many medical/assistive devices may be covered by Medicare or your insurance (with a script from your physician).  It would be worth asking and investigating the possibilities before making a purchase (look for the Durable Medical Equipment benefit information in your policy).

There are also many little things that you can try based on your own observations!  While my father was still living at home I noticed that he was having a difficult time with the heavy glassware that my mother was using and actually dropped his glass at dinner one evening.  I suggested to my mother that she try using lighter glasses at meals and this really helped!  With the increased number of falls that Dad was having I also encouraged Mom to pull up all the little scatter rugs (tripping hazards along with clutter, electrical cords, poor lighting, and raised doorway thresholds).  Just be observant and try minor adjustments.

For a time, my father was using walking sticks to aid with his balance (something one of his friends suggested to him) and it did seem to work well for him until his dementia advanced and weakness became more prominent.  Then, I came to refer to them as his tripping sticks as he was no longer able to use them in a beneficial way and more often than not they were getting tangled up in his feet rather than aiding him in his balance.  He resisted the change to a walker but when he had to be placed in a facility, the therapist was able to prevail upon him that the walker would be safer and he began to use the walker (though the dementia still affected his safety awareness and judgment when using it).

For optimal mental health and wellbeing, the goal is to stay independent for as long as possible in the safest way!  Seek the help of a physician and/or therapist in helping you to find the devices that might best help you help your loved one remain active!

On the journey with you…….Kathy

For more information about fall prevention check out:  http://www.scdhec.gov/health/chcdp/injury/docs/home%20safety.pdf

Being a Caregiver Can Teach You Valuable Life Lessons

Caregiving:  An Act of Love

Caregiving: An Act of Love

Whether we are caring for an aging parent, child or ailing spouse many of the challenges of caregiving are the same.  I would like to share one caregivers story.  Cameron Von St. James was thrust fully into the role of caregiver when shortly after the birth of his first child his wife was diagnosed with cancer.  What he felt and learned during his caregiving experiences are described here in his own words.

By:  Cameron Von St. James

My wife Heather and I welcomed our first and only child, Lily, into the world in August of 2005. It was supposed to be a happy time for us, but just three months later our lives would take a turn for the worse. The holidays were approaching, and we were preparing to celebrate Lily’s first Christmas. Instead, our lives were thrown into chaos when my wife, Heather, was diagnosed with malignant pleural mesothelioma cancer. It was also the day I would begin my new role as a caregiver.

Before we left the doctor’s office that day, I was thrust, unprepared, into my new position as a caregiver. The doctor talked about mesothelioma and treatment options. We were told we could either go to the local hospital, a regional hospital that was highly respected but had no mesothelioma program, or to Dr. David Sugarbaker, a doctor in Boston who specializes in this type of cancer. My wife sat in silence and disbelief. I was hoping she would choose an option. “Oh, God, please help me!” was the look of desperation I saw on her face. I knew I had to be strong for her. I made my first decision as a caregiver when I looked at the doctor and said, “Get us to Boston!” I didn’t realize it then, but it was only the first of many decisions I would make after Heather’s diagnosis.

Chaos replaced our normal life. Before her cancer diagnosis, we both worked full time. Now, she wasn’t able to work, and I was working part time and adjusting to being a caregiver. My days were filled with taking Heather to doctor’s appointments, making travel arrangements for the trips to Boston, and taking care of Lily.

I felt overwhelmed by the growing list of things that needed done. Emotionally I was a wreck. I worried about losing my wife. I wondered if we would lose everything fighting the cancer. I feared I would become a homeless widower with a young daughter to care for. Fear consumed me. I would find myself on the kitchen floor bawling in despair. I wanted this to go away. I was thankful these feelings didn’t last long. I had to be strong. I knew I needed to be the one Heather could lean on. I was careful not to let her see me during my times of distress.

Offers of financial assistance and words of comfort were numerous from friends, family, and even strangers. We could never thank all who helped us in our time of need. When people offer assistance, no matter how big or small, take it. You are not alone. Embrace these people into your life. They will help lighten the load.

It isn’t easy being a caregiver. It’s not a job you can walk away from or quit when the going gets rough. It will probably be the toughest challenge you ever have to deal with. It’s normal to feel anger, uncertainty, and stress, but don’t allow your emotions to take you hostage. Give yourself time to grieve during the bad days. Nobody is going to cope well every day under stressful circumstances. Never give up hope. Use your resources to help you keep your sanity and navigate through this difficult journey.

It’s been seven years since Heather’s mesothelioma diagnosis, and she is cancer free today. After going through surgery, chemotherapy, and radiation, she was able to beat this horrible disease. It has taken years for life to return to a somewhat normal routine again.

I have grown through this ordeal. The cancer helped me see how precious time is. It also taught me that my stubbornness has advantages. Two years after Heather’s diagnosis, I went back to school full time to study Information Technology while working a full time job and caring for Heather and our daughter, who was only two years old at the time.

Fighting cancer with my wife taught me how to balance time commitments and cope with stress. This prepared me for the challenges of going back to school and completing my education. I graduated with high honors and was the speaker at my class graduation. I will never forget the feeling of accomplishment I felt as I stood there.

If someone had asked me on November 21, 2005, where I was going to be in five years, I never in a million years would have expected to be up on that stage giving a speech. The future looked dismal that fateful day. Never giving up hope is what made the difference in my life. I learned through this experience that inside each of us is someone capable of accomplishing more than we can imagine. We simply have to believe in ourselves and never give up.

Click here to view a video of Heather’s Story

On the journey with you,

Kathy

Does She Even Know I’m Here?

Caring for a loved one with dementia is truly a difficult road.  To see someone important in your life slowly slipping away from you can be heart wrenching.  And when your loved one enters into the later stages of dementia, you may wonder if they even know that you are there any longer.

This video can affirm for you that the connection can still exist.  Though you may not be greeted with that connection during each visit or interaction, when it happens it can be very powerful for you.

 

If you are caring for or have a loved one who is suffering from dementia, please watch this video…..all the way to the end.  Though it may initially break your heart, it will ultimately lift you up and validate your ongoing efforts to connect to your loved one.

 

Naomi Feil, founder of Validation Therapy, shares a breakthrough moment of communication with Gladys Wilson, a woman who was diagnosed with Alzheimer’s in 2000 and is virtually non-verbal.

 

On the journey with you,

Kathy

Are You Suffering from Compassion Fatigue?

Worn out by Compassion Fatigue?

Worn out by Compassion Fatigue?

Caring for a child, a disabled sibling, an ailing spouse or an elderly parent can take a huge emotional toll on the caregiver.  Caregiving is an act of compassion that can lead one to an unsustainable level of selflessness; and in this selflessness, cause damaging, long-term effects on the caregiver.  Whether you believe asking for help is a sign of weakness or have convinced yourself that you are the only one capable of adequately providing the level of care you perceive is needed, you unwittingly set yourself up for experiencing the exhaustion, stress, frustration and isolation that it can create.

In medical circles, the ultimate fatigue and burnout that this situation can create is referred to as ‘Compassion Fatigue’.  This develops out of the demanding nature of showing ongoing compassion for somebody whose circumstances are likely not going to improve.  The caregiver may go through the motions of continuing to care for the loved one but, over time, the compassion diminishes.

In the worst case scenario, this can lead to neglect and/or abuse of the loved one requiring the care!

Some of the warning signs that you may be suffering from compassion fatigue are:  Abusing drugs, alcohol or food; anger; blaming; depression; hopelessness; emotional and/or physical exhaustion; GI complaints; frequent headaches; sleep disturbance; diminished sense of personal accomplishment; increase irritability and; less ability to feel joy.

Caregivers need, and deserve, a healthy personal life.  When a caregiver makes the effort to keep a balance between their empathy and their objectivity, they are able to realize the need for and to create a healthier self-care plan.

Set aside some time to nurture yourself.  When the caregiver is rested, energized and in a positive frame of mine, the caregiving load becomes a bit lighter.  Taking this time for yourself may feel selfish and unnatural at first, but commit to doing at least one thing each day that is focused on your enjoyment and benefits your sense of well-being.

Identify the things about caregiving that cause you the most stress.  Look for ways to eliminate them as much as possible or make sure that you create a routine that allows you to balance those activities with things that you may enjoy or at least find less stressful.  Don’t line up all of the stressful activities in a row; break them up and spread them out!

When you are feeling overwhelmed and are juggling too many balls in the air, know your limits.  That’s the time to take a moment to prioritize those ‘to-do’ items and determine what really must be done and what can wait awhile or be eliminated altogether.  Taking these few moments to do this may give you back a small feeling of control in the situation and help to eliminate some of the frustration.

Validate your commitment to providing good care to your loved one by reaching out for some help!  Preventing ‘compassion fatigue’ is going to allow you to provide the good care that you want to offer.  Far from being a weakness, asking for the help you require is a sign of strength in knowing what your own needs are.

So, do more than just survive the emotional grinder of caregiving.  Prevent compassion fatigue by keeping your own needs as part of the caregiver equation.  Both you and your loved one will reap the benefits!

On the journey with you…….Kathy

We’ve Got Important Things to Discuss

Let's Talk

Let’s Talk

As you were raising your children, there were conversations that you knew you needed to have with them at various times through the years.  When the kids were really young, they were usually instructional conversations about how to act and what to do but as the kids grew, the conversations became a little more complicated.

The ‘Sex Talk’ is a conversation that many parents dread.  Some feel awkward talking to their kids about this topic; agonizing over what to tell, how much to say and how detailed to become.  Kids sometimes dread these conversations as much as the parents do!  But it really is a conversation that can’t be ignored.  To refuse to confront the fact that your children are growing up is a mistake you cannot afford to make as a parent.

There is another conversation I feel has every bit as big of an impact on how things may go in your future.

That conversation is the one that needs to happen between adult children and their aging parents.  The conversation about what the parent’s plans and wishes are for the years when the aging parent may need help from the kids.  This is a talk that few really to want to have; but, I truly believe that you are in denial if you don’t face the fact that those times eventually come.  The one certainty in life is that, at some point, it ends.

I live in Pennsylvania Dutch country and one thing that people do not want to talk about here, is their money.  Many people are very private about what they have and don’t want to go around sharing that with others.

And that’s fine.  You don’t have to pass out a spread sheet to all of your friends and neighbors, but you might want to consider sharing some things with your kids.  Aging parents who expect, or hope, that their kids will help them to manage when they need help, need to share information about their finances and consider setting up some mechanism for access.  It does not mean you need to sign your money over, but if, at some point, decisions have to be made on your behalf, it is best for your family to be able to make an informed decision based on accurate information.

You should consult with an Elder Law Attorney about how to set things up to protect yourself while providing some path for your kids to help you should the need arise.

If you have a child that you trust, set them up to handle your affairs; if you don’t have a child or do not trust them to act in your best interests, find somebody else to do this for you (an attorney can help with that as well).

Once these decisions have been made and plans put into place, you must then share it with those who need to know!

Don’t hide information that may be important.  Organize the finances and share the location of the information with your appointed trustee.  Give them a general idea of the scope of assets, if you feel that you can, so that they will be able to make good judgments about what you may and may not be able to afford at any given time in the future.

My father was well into early dementia before the finances were handed off to my brother (who helps my mother) leaving my brother in a position where he was constantly discovering new things!  My father had long ago lost the capacity to handle things with the accuracy that they required even neglecting to begin taking mandatory distributions from some of his retirement funds which now may require that they pay a penalty.

If the conversations had been welcomed and initiated by my father (my mother would not have hesitated) years before, many hours spent addressing complications could have been avoided.

Parents frequently say that they do not want to become a burden on their children.  But by not having these conversations, that is often what happens in the end.  The time and frustration that the caregivers exert figuring out and then straightening out the situation when it becomes necessary, becomes a burden to them.

So, if you are the aging parent, make this conversation a priority; it is your responsibility.

And if you are the adult child, share this article with your parent and ask for that conversation.  Express to your parent that having this conversation would help you minimize the stress and strain, of what might already become sad and stressful time, in the future.

Communicate.  Work with an Elder Law Attorney to get the proper framework for your family situation set up.

Then, it can be filed away for the day when you might need it.

On the journey with you…….Kathy