Life After Caregiving

I recently got to thinking about why I haven’t really slept well each night since my wife’s passing (in was in mid-August 2011).

While I’ve emotionally, intellectually (and to my own degree of spirtuality) have come to accept her death, it struck me that maybe my brain is not yet physically adjusted. For example, I’m still somewhat sensitive to noise and movement in the night. It occurred to me that my brain was still in “first responder” mode.

During the daytime, the nurse’s aide would help with my wife, but at night, when she went to her bedroom, I became the first responder to any issues – like pain, medication or shifting her when she called out to me. It’s as if my brain is still acclimated to being “on alert” and to be the primary responder. As I now have this to ponder, I wonder if I can begin to heal myself, now that I may know something of the possible underlying issue? We shall see.

Often, caregivers struggle with learning a new routine after a loved one’s passing. I read an article recently from a woman who explained “While you’re caring for the old, you can’t believe what you’re called on to do and where you find yourself, can’t believe that your time with them will ever end. Then one day, it just does.”

She describes how she would look around at the things she inherited from her family after their passing and still seeing them sitting in the same chairs, using the same essentials around the house. No matter how much you prepare for a loved one’s death, the residual effects when suddenly your entire routine is changed in a second is devastating and can take years to overcome.

What sorts of things have you experienced after caregiving that were shocking to you?

 

3 Mobile Apps to Help Caregivers Work Smarter, Not Harder

Although I became a caregiver because my wife fell ill, my book doesn’t just resonate with caregivers dealing with cancer-related illnesses. As baby boomers begin to retire, there is an added strain on families and loved ones to provide appropriate end-of-life care. According to a few articles I read, especially this one the current number of baby boomers retiring is expected to double in 2013.

No one will tell you that caregiving is easy. Caregivers often end up with poor health, high stress levels and greater impulsivity related to fatigue and stress. Some caregivers think they have to do it all on their own.

You don’t.

As the numbers of baby boomers settling into retirement rises and caregiver stress has come into focus, the need is ever greater for support systems catered to them. It’s not just the ill that needs care. Taking time for yourself and working smarter – not harder – is more important now than every before.

© Jivanchild | Dreamstime Stock Photos & Stock Free Images

Now that mobile technology has become more prevalent, there are many mobile apps that can help caregivers work smarter, not harder. One of my personal favorites, AllRecipes.com Dinner Spinner, gives recipes based on your input of main ingredient and how long you have to cook a meal. The app spits out recipes that fit your time frame and ingredients.  Although the app isn’t free, it will definitely give you more free time!

Another app specifically geared to help you remember important information about your loved one include Pain Care and iPharmacy Pro. iPharmacy Pro can help caregivers identify pills their loved ones are taking. We’ve all been there – you load the weekly pill case and completely forget which is which. No matter how much you document in a bind this can be a real problem. iPharmacyPro allows you to identify the pill by typing in the imprint code, color or shape.

Finally – for those moments of waiting and reducing anger when you just want to throw something, there’s always Angry Birds.

Have you found any mobile apps that have helped you in caregiving? Share them!

Be All That You Can Be

It isn’t just an Army slogan, it’s an important lesson for anyone in the business of caregiving. I found while caregiving that the signs of being stressed were generally similar to depression. The fatigue, the lack of enjoyment for activities we once enjoyed and gaining (or sometimes losing) weight. 

I recently read an article from the Mayo Clinic that left me nodding my head up and down the entire time I read. While I didn’t spend as much time on social support options, the biggest thing for me was to find time for myself. Sleep is ever so important. Never neglect the urge to sleep.

Taking time to yourself is the hardest to do for a person so used to giving, all the time. Even those who don’t give 24/7 care to a loved one but are “givers” by nature will find it difficult to give themselves the same care they devote to others. This can hinder thought processes not only as a caregiver, but one who does not.

My simple advice is to remember to be all that you can be.. be the best and most awake and alert you can be. If you’re struggling with work, family or other stressors, remember that you cannot do it without being alert, which comes from full rest.

Go to sleep folks. Be all that you can be. 

5 Tips for the Caregiver to Stay On Top Of Things

5 tips for the caregiver to stay on top of things

1. Find quiet time each day by yourself to plan the day in an orderly sequence
2. Know when to take a break and stop being a caregiver – even for an hour a week (it doesn’t have to be a daily thing)
3. Get as much sleep as you can, even a cat nap whenever you feel rundown (if you’re in the waiting room and the patient is being treated and you’re by yourself)
4. Don’t try to be superman or superwoman and do it all in one day – you can’t
5. Repeat – try to get rest and more sleep

These may seem very basic, but if you’re caregiving you know basic is all it takes to get things done and take care of yourself as well. Try a few, tell me how they go.

The Faraway Caregiver

My thinking is that you can give care from a distance, but certainly not by yourself. And you won’t be the primary caregiver – in my mind that’s not possible as the patient might need you at a moment’s notice.

That being said, the faraway caregiver can be useful to the care process, as maybe that aspect of caregiving can be done remotely – there are some areas where that could be accomplished. Sometimes someone a bit detached from the day to day can see the situation differently and advise either or both the patient and the caregiver.

Also, this caregiver might be able to come in for a short visit and take over the role of primary caregiver, giving the other person a much need physical and mental rest. But, as primary caregiver, physical presence matters!

When do you ask for help?

Catherine, a popular commenter on my blog, asked me where I sought assistance or help during my time as a caregiver and how I got through it.

To be perfectly honest, I think this is an individual issue for each caregiver. There was only one time during my relatively short period (18 mos) as caregiver when I needed to ask for help. It was when my wife was going to come home after a stay in the hospital and I realized I could not give her the type of home medical care she needed. I had the feeling of being mentally blank!

Other caregivers have expressed the same feeling when they realized it was then that they needed help. But recognizing this (or other symptoms) for needing assistance is the first part. The second part is that you have to ask for help and accept to yourself that you are not superman or superwoman. We all have our breaking point and we are not bad or incompetent people – we are human with human limitations.

I also mentioned to her that one of the reasons I use the term “the second patient” is because I often had to remember to stop and take care of myself. Too often as a caregiver you forget about yourself when caring for the sick patient, as anyone with strong emotional ties would.

Just remember – don’t be afraid to ask for help when you need it, especially in those mentally blank moments.

Caring for a Child – In Reverse

In my book, I wrote about having to treat the patient more and more like a child growing in reverse. While some may think of this as harsh, I found that as the cancer progressed, my wife was less and less independent and needed more and more care. Toward the end, she could not even feed herself. I had to literally spoon feed her as one does with a baby.

The real point is that the caregiver has to increase his/her efforts at caregiving as the patient’s condition continues to deteriorate. This then is one of the physical challenge of being asked to do more when you are becoming more tired and exhausted from caregiving as time goes on. There is also the emotional strength needed to see a loved one slip away little by little and know that he/she knows they are slipping away.

We have to find our inner strength each in our own way, but we have to be prepared to take care of a person who will become more and more dependent on you as time goes on toward the end – more like a child that needs our constant attention and love.

 

Brain Stress: Why is it Good?

To continue on the sports analogy, you become a better athlete when you practice and play. You’re body is “stressed” and that allows you to improve. However, if you over-exercise and over-stress your body, you can injure your body and then you become potentially a patient of a sports injury. With minor sports injury, one can stop playing the sport for a period of time until the body heals itself.

Now, a bit of stress for the brain is good – it stimulates us – learning is a type of stress – it challenges our brains. The more we learn and study and practice, the better our brains become. But if you try to do too much, you in effect cause an “injury” to your brain. BUT, unlike sports, you can’t stop using your brain until it heals.

As a caregiver, your brain receives stress and we can tolerate it up to a point. When there is too much stress, then we “injure our brain” and we become less useful. Thus, the caregiver, as a patient, is a patient that needs PREVENTITIVE care. Once we are overcome by stress, we cannot function at 100% and the two people suffer – the caregiver and the patient (because the caregiver can’t give the care to the patient).

Thus, the caregiver has to try to stay physically healthy and mentally healthy. It can be too easy to be caught up in the moment of a crisis and we go over the edge. Each of us has to learn how to keep ourselves healthy in a preventitive way.

For me, physically, I tried to keep myself in some kind of shape – I continued to play tennis; I tried to eat properly and I tried to get as much sleep as I could.

Pyschologically, sleep is also important; doing something that takes you away from being a caregiver is good for the brain. I tried to get to meet people for coffee or a drink just to get away and not be cooped up in the house.

Do things that allow you to get away for just a short break and clear your head.

How the Body Affects the Mind – The Athlete’s Advantage as Caregiver

Having played sports growing up and even to this day (tennis only now), I learned about how to tell when I was tiring out. When I tired out after playing long and/or hard, not only did by ability to play at my best deteriorate, everything else I had to do afterwards was a chore, tiring and mentally draining. I needed rest for my body to recuperate. But knowing this as an athlete, knowing this about yourself, is a way to understand when you, as the caregiver, are losing the ability to be a caregiver effectively. We need to stop caregiving for a while, just as we need to stop playing, and rest – physically and mentally.

After I had enough rest, then I felt mentally capable of taking on tasks again. Knowing when you’re “hitting the wall” can be hard to do, especially if you’re doing something you haven’t done before, such as being a caregiver. So, you have to use other metrics or signals your mind and body are giving you – the caregiver is really a patient too – a patient that needs preventative treatment.

Stress and Hurricane Sandy

Stress is an enemy of the brain. this past week, millions were subjected to Hurricane Sandy. As we begin to move past it, some of us may look back and wonder in amazement at ourselves, amazed that we did or thought some impractical and frankly, stupid things, when we normally would not have. Why? Stress. It causes the brain to misfire and we can’t think properly. That is why we need tools and aids to help us. For me, lists were one answer. It was my scorecard. Did I do the things I needed? Did I achieve what I set out to do? For all of us in normal circumstances, we would not need lists, but under the severe stress caregivers undergo and the stress of those in Hurricane Sandy, it is remarkable what and how simple things can make a difference.

The caregiver has several roles in relationship with the patient, but none so difficult as being the butt of all insults, negativity and fear of the patient. Someone you thought you knew could suddenly turn into a highly charged emotional person. It is true what they say about a wounded animal that is more to be feared. As the caregiver, we have to try to understand and accept the patient’s expression of their greatest fear – death. No one really knows what is beyond. you can only respond in kind so far – your loved one needs you to be their rock of gibraltar, even as you feel you are sinking into the sea like venice. You learn a lot about yourself in these times too!