Caregiving: Preparing For The Next Phase

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Sometimes when you are in the daily grind of caregiving, you become numb and forget to think about preparing for the next phase.

When you are dealing with a progressive disease, as my father is, each day you lose a little more of your capabilities.  The changes are tiny and only if you are paying attention might you realize what is happening before your very eyes.  I notice it only when I stop and reflect back, and then I see that progression. This week, I did a bit of that reflection as I was looking through photos from the last year on my computer. A year ago, my father was still at Sunrise of Paoli. He had just come off of a fall and had completed his rehab for a hip replacement. It was around this time that I realized that I needed to move him;  I realized that the place he was living was really not meeting his needs.  I also remember that at that time, I was able to communicate with him most of the time.  Yes, he had difficulty remembering anything short term, but if I kept my sentences short enough, we could communicate.

A year later, I am seeing fewer and fewer of those meaningful exchanges.

His ability to communicate is almost non-existent, although he doesn’t realize it so he continues to “talk” to me and I continue to do “improv” with him.  We “talk” but 95% of the time I have no idea what he is trying to say. I continue to “talk” to him as I want him to always feel he can express himself and I am hoping through my improv skills I make him feel as if he is communicating with me.  He is still able to follow simple directions, which is great.

However, I need to start planning for how I am going to handle the next phase of his disease.  I predict that at some point he will give up trying to talk either out of frustration or because he no longer has the wind power to push his words out (another side effect of Parkinson’s is that your voice gets very very quiet). I have been testing out strategies for this next phase. And what I have found is that there is a tremendous amount that can be communicated through touch.  When words fail, I often just reach out and hold his hand.

It is electric.  I instantly feel the love flowing freely in both directions.

Sometimes I just massage his shoulders and I feel him relax and moan in glee.  This weekend I bought him a massage.  I found a therapist that specializes in prenatal and geriatric massage. He was in heaven. And, I’m told, he was able to verbalize his happiness to the staff all afternoon.

So when the going gets tough….and it will get tougher, it is important to start thinking about that next phase. The next phase may, in fact, be more rewarding than the prior phase.

 

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Regrets and Things I am Thankful For

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America. I love You, but also think much of the rest of the world does this one thing better.

Taking care of our elderly.

I have traveled a bit and one takeaway that I have brought home is the stark difference with how we handle aging vs. how much of the rest of the world handles it. When I graduated from college, the last thing I wanted to do was live near my parents.  I was seeking adventure and independence. I got it.  As a result, I never really got to experience an adult relationship with my parents.

Yes, I would visit them, but I would only see them about twice a year.  That is 33 years of only seeing them twice a year.  That, my friends amounts to only 66 visits in 33 years.  That is pitiful and starkly different from how families are structured in much of the rest of the world.

Families stay close.  Parents live (often) in the same town and in some cultures, even in the same house with their kids.  By keeping this family structure, it helps out both the young and the old.  The young people have support as they raise their own families.  And the older people get help as they age and require it.  And the relationship has an opportunity to mature over that time into a friendship, leaving behind the parent/child relationship they once had.

Because I was so stubbornly independent, I moved halfway across the country, where I had my own family. My husband and I raised our kids, essentially on our own, as we had no family nearby. My kids were cheated out of real meaningful relationships with their grandparents and vis-a-versa. And I was cheated out of valuable support in raising my kids.  I had a double whammy because my mom passed away before I was even married, so I didn’t have any “mom” advice either.

Now, 33 years later, I move my dad out to be closer to me so I can help care for him as he ages. He came out here too late to enjoy his grandkids as they have flown the nest. His own kids are much closer geographically than ever before but because he can no longer travel, his sons are only able to visit sporadically. So now you have my regrets.

But what about the things I am thankful for?

I have spent every single day for the last year and a half with my father, for hours a day. In that time, even with his communication and dementia difficulties, I have come to really appreciate him and to love him even more deeply. Despite all of his challenges (and he has many), he has maintained his sense of humor, his kindness and his “go with the flow” personality. I have learned about resiliance and about the importance of patience and cooperation. In short, I have gotten to know him and see him through my adult eyes, something I didn’t have the opportunity to do before.  And for that I am grateful.

I plan to do things differently in my own future. I will watch closely where my kids land.  And, when the time is right (and while I can still enjoy them and their families), I will move closer to them.

Because at the end of the day, nothing matters as much as family.

6 Tips for Living to 90 With Grace & Humor

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Dad will turn 90 tomorrow. As I reflect on a life well-lived, I can honestly say that the way to live to the ripe old age of 90 boils down to these personality attributes. This is what my dad has taught me and more importantly has reinforced for me in the last year when I have been his caregiver.

  1. Don’t worry until you need to worry
  2. Most things pass, so obsessing on something will only cause unnecessary angst.
  3. Be content with where you are in life and look for the positive things about your current situation.
  4. Be grateful
  5. Always find things to laugh about
  6. Even though you are frustrated with your declining abilities, there is always a way to find humor even in frustration.

A prime example of #6.  My dad’s declining language abilities often will mean that he creates made-up words in lieu of the word he is trying to find. What comes out of his mouth can be truly funny. One way to look at that is to be sad and frustrated with his circumstance. What I have found with my dad is that if I can keep my demeanor positive, he reflects that back to me. So one day I suggested we create a Paul Light “dictionary” for all his made-up words.  He loved that idea and laughed at the thought. So every time comes up with a new word, I remind him that it will be going into  the “dictionary.” He laughs every time. (#6 on the list)

Where he is living, at Daylesford Crossing,  is generally a very positive environment.  The staff has picked up on this positivity and reflects it back to him regularly.  As a result, despite his declining abilities, he remains happy and positive (#3 on the list).

Although his cognitive state continues to decline and he has good days and bad days, occasionally he reaches out to me and instigates a hug, or says “I love you” or thanks me. It is on those rare occasions that I know everything I am doing for him has been worthwhile (#4 on the list).

And finally, my dad’s mantra throughout his life has always been “This, too, shall pass” which has meant that he really isn’t a worrier and he doesn’t get caught up in something unpleasant that is happening in the moment because he knows it is temporary. I think this has meant a much less stressful life overall. (#1 and #2 on the list).

Lessons learned.

10 tips for thriving longer

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SEVENTY FIVE PERCENT

That’s a big number.  That is how much control we each have to determine who we will live out our lives.  Will be be mired in chronic illnesses?  Will we be the man or woman bungee jumping on their 90th birthday?  The person getting their Ph.D at 85?  It turns out we have a lot of say in how our story ends.

Here are 10 tips on how to control your own destiny.

  1. Use it or lose it. It’s true that the more sedentary you become, the less you will be able to do the things you love to do because your muscles will atrophy, your brain will become apathetic….you get the message.  What your Grandma told you is actually backed by scientific evidence.
  2. Keep moving. In a 2008 National Health Survey, they discovered that 36 percent of adults were considered inactive.That’s ALL ADULTS.  If you focused that on just older adults, I suspect the number would rise. Being sedentary increases your risk dramatically for all kinds of chronic illness from heart disease to osteoporosis to decreased cognition.  Trust me, after spending hours with my dad in an assisted living center, you DON’T want to sign up for any of these. Unfortunately our society has segmented physical activity for us.  Now it is relegated to “going to the gym” or “exercise class.” Instead, it should be worked into the very fabric of our lives, just as it was for our ancestors.
  3. Challenge your brain. This doesn’t necessarily  mean going back to school, although that would be great.  It just means challenging yourself to learn something or do something new each day.  Walk a different way to the store than you usually do. Read.Try your hand at learning a new language. An interesting study conducted in Minnesota on Nuns showed that when they performed autopsies on their brains after death, they found all the typical anatomical things associated with Alzheimers. However, none of the Nuns showed any symptoms because they continued to stay active physically and mentally throughout their lives, thereby stalling the onset of those symptoms. You can control your destiny.
  4. Stay Connected. Our ancestors learned that they were better together than they were alone.  We are not human unless we are with others. This is why solitary confinement is probably the most extreme torture method used. Several scientific studies have proven that when we feel a part of a community, our bodies, at the cellular level, show positive gains.
  5. Lower your Risks. Of course if you are prone to heart disease and diabetes, as I am, because my mother had both, it is important to actively lower those risks.  For me, that meant keeping my weight in order, making sure I get plenty of exercise and I try to eat clean.  All of this helps minimize my risk.  Know your risks and be the Captain of your own health.
  6. Never Act Your Age. If you expect to be old, you will act old.  Enough said.  You are the  maestro of your life. You decide whether you are old.  I suggest to you that you are never truly “old.”  You may have to face physical challenges at some point – we all will age at some point physically.  But just like you did when you were young, you find “work around” solutions to keep going.  You don’t just accept that your better days are behind you.  You just don’t.
  7. Wherever you are, be in the moment.  It is so important to get out in nature.  To get off the electronics.  To focus all of your attention on your spouse, your grandkids, your kids. In today’s life, technology has caused our brains to run 24/7 and it’s not a healthy thing.  You don’t have to meditate, although that is one way to force yourself to be in the moment.  But it is truly healthy for you to take a walk on a beautiful day;  look at the fall color; focus on the breeze. Be where you are. When your mind is on the next thing, you are creating stress.  And we all know, stress is a killer.
  8. Keep children in your life. There is something magical about the connection we all have to children, whether they are your own or others.  They view their world through a prism of constant learning.  We were once like that.  To be around children offers you the wonderful opportunity to teach them and to also learn from them.  This stimulates your brain, can be physically demanding (keeping you physically active) an is just plain fun!
  9. Find purpose. This cannot be understated.  We are wired to live purposefully. As Albert Schweitzer said “I don’t know what your destiny will be, but one thing I know: the only ones among you who will be really happy are those who have sough and found a way to serve.” Think about how you might serve others.  This is the element that ties it all together.  If you are serving others, you will find yourself a part of a community, you will find yourself mentally challenged, you will be fully engrossed in this activity, which means you will be “in the moment” and it will help reduce your overall risks for chronic illness. And you’ll be helping others!  A Win-Win!
  10. Laugh often. It has been scientifically proven that laughter lowers the stress hormone cortisol.You can actually laugh yourself to better health. A study conducted at Boston University on Centenarians found over a 15 year study of those 100+ that they were able to handle stress much better, and to show more resilience if they laughed often. Laughter usually happens when you are with someone, so that fulfills tip #4.

GET TO WORK ON YOUR OWN LIFE!

Live Longer. Live Better.

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We really are in control of our destiny.

Daylesford Crossing, where my dad lives, had a visiting author, Dr. Richard Landry, MPH,  come and speak this evening.  There were a couple of notable takeaways that I’d like to share from his presentation:

  1. In our country, we spend 3-4% on preventable healthcare and the rest on the treatment of chronic diseases
  2. According to The MacArthur Foundation study on successful aging, 70% of the physical difference and 50% of the intellectual difference between those who age successfully and those who age by experiencing a slow decline lived out with chronic illness were due to lifestyle choices…Those who lead sedentary lives, don’t take care of themselves mentally, spiritually or otherwise will live nearly HALF of their lives with chronic illnesses – most of which can be either forestalled or prevented simply by making different choices in our lives.
  3. If you want to live longer and die shorter, you must live your life like the fall foliage we all appreciate:  as we age, we grow more beautiful individually and collectively with all the other trees, we become a stunning display.  And when our time arrives, we die just as the leaves fall from the tree.

Physically speaking we have evolved from hunters and gatherers.  They used their bodies.  They moved ALL THE TIME. On average they walked between 15,000 and 23,000 steps a day.  They had to always be thinking, innovating to stay one step ahead of their environment which was full of predators.  They found that they were more effective working as a community rather than individually. And they had no formal schooling, so the younger folks learned from the older folks and the older folks were held in high regard and had a purpose for their entire lives. This is how we lived for a very very long time.  It is only since the industrial revolution that we have dramatically veered away from this lifestyle.

We have invented all sorts of things to keep us from moving – cars, escalators, moving sidewalks, TV, etc.  Our society has become extremely youth focused, therefore marginalizing  a huge segment of the older population. As we age, we tend to become more isolated as friends die off, move and spouses die. And we start to buy in to the belief that our prime has passed.  All of these attitudes and societal norms have contributed to a huge rise in chronic disease.  Couple this with the fact that science has us all living longer and you have a tsunami on our hands.

In my next blog post I will write about some of the ways you can stem this tide and, at any age, live your life the way it was meant to be lived.  Age is just a number.  It’s how you internalize that and the choices you make that has the biggest difference in how you will age.

Stay tuned.

I Am The Bridge

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I am heartbroken when I see the elderly, particularly those who have been stricken with Dementia, Alzheimers or other memory impairment, alone, day after day. At the beginning, family visits often. They want to make sure they visit while the person can “still remember who they are.”  Once they start losing that ability, the visits slow down and the often are far and few between. For many elders, they receive no visitors.

I can totally see how it can happen, however.   I visit my dad daily, often for 2-4 hours. Trust me, it isn’t always that fun.  I have many, many other ways I could spend my days. In my dad’s case, his language is impaired, so for much of the time we “converse” but I have no idea what he is trying to communicate to me. So I improvise. I nod my head A LOT. I tell him I will check on “it.” What is “it?”  It could be anything that I perceive he is worried about.  Even if I have no idea what he is worried about, I do whatever I can to make sure HE ISN’T WORRIED.

I make sure he gets outside every day the weather cooperates. I get him out of his wheelchair and walk with him to make sure he is getting enough exercise. But mostly I sit with him and talk to him. It’s silly, really because we often end up having parallel conversations.  I tell him about what is new in my life (and believe me there isn’t much from day to day) and then he responds back with a sentence that doesn’t relate to anything we were talking about. It’s an interesting phenomenon to experience, believe me.  The worst is when he asks me a direct question and because I have no idea what he is asking me, I have to make something up that responds to his question just a little bit.  But really, who knows what he is asking me?

I talk to him about his parents. We talk about trips he took – things that he still has a grasp on. The other day, he told me that his dad was a pig farmer…that he bought and sold pigs. That was the first I had heard that. I only knew my Grandpa as the owner of Light Furniture in Denver CO.  I will be checking on this factoid as I am intrigued to find out if this could possibly have been true.

When people stop visiting because they think their loved one no longer knows them, they think, “what’s the point?”

HERE’S THE POINT

We are the bridge.  It is our  job to help him remember his life, even as it slips farther and farther out of reach. My dad is still very much in there, despite his language difficulties and his inability to remember anything for more than 10 minutes.

So, the next time you say “What’s the point?” Remember that YOU ARE HIS BRIDGE. Pick up the phone and call.  Visit. It matters.

5 Techniques for Caring for a Dementia Patient

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I have been caring for my dad for about 4 years, 3 of which were remotely and the last one locally. Like everyone dealing with caring for a parent or other loved one, there is no advance cramming you can do to prepare for this job – you wake up one day and suddenly you need to be an expert in all things elder-care. It is the ONLY job that doesn’t come with a manual and there are few resources to help you other than learning on the job.

I thought it might be helpful to share some of the techniques I have developed and learned over this time period. These work with my dad, and I hope that they might be useful to you.  Unfortunately, there are over 70 different types of dementias so your loved one’s situation may be different from my fathers, but all dementias have many crossovers, so it’s worth trying some of these techniques.  You have nothing to lose.

  1. Pay attention. Be observant. To everything. I missed so many red flags when he was deteriorating.  I was so concerned with pushing him into assisted living that I stupidly was relying on him (someone who I now know had the early stages of dementia) to tell me when he was ready.  If you aren’t there, every day, then make sure a neighbor is watching out for signs.  Some of the early signs that I DID KNOW about didn’t register to me as signs.  Here they are:
    • Losing the ability to “work” the remote control on the TV; or conversely, saying that his/her TV is broken. Again.
    • Difficulty doing tasks that were, before, second nature.  In my case, my dad could send emails, was on facebook and was pretty “with it” for a guy in his mid-80s. The day I spent one full hour with him on the phone trying to instruct him how to open a browser window, should have been more than a red flag; it should have been a rocket blast. But it wasn’t.  Because I didn’t know anything about dementia.  I thought it was simply, short-term memory impairment.  It is so much more.
    • Impaired judgment.  One day, my dad decided to reheat a slice of leftover pizza. So he put the tin-foil-wrapped slice right on top of the burner and turned the burner on. Can you spell F-I-R-E? Again, didn’t register as a red flag.
    • Word finding difficulties.  This comes with aging for all of us.  It doesn’t necessarily mean dementia, but it is a possible pre-curser.  So if you see signs of this, be even MORE tuned in for other signs.
    • Forgetting doctor appointments or to take medicine. My dad even forgot that he brought his walker to lunch.  After lunch, he went crazy looking for it in his room because he had literally no recollection of it every leaving his apartment.
  2. When you enter the room where your loved one is sitting, make sure you are directly in front of them and have made eye contact.  First offer your hand (even if you plan to hug them next). By offering your hand, you give them time to process who you are. Processing slows down with Dementia.  Their vision narrows and eventually becomes binocular so don’t come at him from the side as you may startle them.  The instinct to shake hands will never leave them and by extending your hand to them, they will take yours instinctively.  Then tell them who you are, even if you think they should know you. And make sure to tell them your relationship.  “Hi Uncle Paul, it’s Bev, your niece.”
  3. Always tell them what you are about to do or where you are going (if you move them). Their world is very scary right now.  They want advance notice of any changes. The fewer changes you can make, the more comfortable they are.  If you never take them from the facility where they are living, they won’t care, as long as their routine isn’t disrupted.  For them, routine means safety.
  4. If you are a healthcare provider and want to take their blood pressure or re-bandage a wound, make sure to tell them what you are going to do and why and then, most importantly, ASK THEIR PERMISSION TO DO SO.  They have so little control left; they want to retain control over their body.
  5. Try to focus your activities on things they can still do.  Music is a wonderful activity as it is retained in a part of the brain that is unaffected by Dementia.  Dance together.  Do karaoke. Play name that tune. Play catch with a beach ball or a football, even from a seated position.  Hand eye coordination seems to stay in place and it can be fun!
I will continue with more techniques in future blog posts, so check back.  And if you haven’t subscribed, please sign up so you’ll get the next blog post delivered to your email. And finally, if you have any techniques that have worked for you, PLEASE SHARE THEM WITH ME!  I am always learning on this job.