Keeping Up My Stamina Is Difficult

staminaThis is, hands down, the most physically and mentally draining task I have ever tackled.  Taking care of my father, a 188 lb guy who is practically immobile and mostly cognitively gone is difficult for anyone.  When you are doing it single-handedly without any additional help, it can seem overwhelming at times. It becomes a test of who has the most stamina – my dad or me.

Some days, it is a toss up.

With rarely a day off, I visit him 7 days a week. My shortest visit is around 90 minutes.  Depending on whether he has a doctor appointment of other needs, which can stretch into half a day. We do the same thing day in and day out.  I stretch him, both his legs and upper body.  Then I get him out of the chair and have him walk, assisted, for about 250 feet.  Then we stretch a bit more.  Then if the timing works out I bring him to the exercise activity where they throw and kick a beach ball around. Then I get him set up for lunch. If I come later in the day, rinse and repeat above, except I set him up for dinner. Three days a week, one of the in-house exercise physiologists comes and walks with him so I am less pressured to walk him on those days and then we just sit together or carry on a fake conversation. I say “fake” because on my side of the conversation I am doing improv as I have no idea what he is trying to say. On his side of the conversation, he thinks he is having a conversation with me, but he literally makes no sense at all. It’s an out-of-body experience. Truly.hich

Today, he could barely get up out of his chair. It was exhausting. He was exhausted, so I transferred him into the bed for a nap. After a 10-minute cat nap (his specialty), I then had to get him back into the chair.  This is no small task for a large man like he is.  He weighs about 53 lbs more than I do these days.

So how do I keep up my stamina?  I work out 4 times a week.  I lift weights and also walk his dog and mine twice a day up and down the nearby hills. I try to keep my mental stamina by focusing on the present ONLY. If I even start to migrate to the future, I stop myself. Right now is all I have. I don’t know what the future will bring and I can only impact the present. So that is what I try to do. That’s all I can do.

If you know anyone who is taking care of a loved one, particularly one with Dementia and/or mobility issues and you are wondering how you can help them?  Here’s how. Pick up the phone and ask them what day they would like to take off. Tell them that you have their back and you’d like to spend the day with (fill in the blank). You would be helping both the elderly person and the caregiver more than you realize. Until you have walked in these shoes, you cannot realize the toll it can take on a person.

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.

 

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.

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.

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.

 

The Roller Coaster Ride of Emotions a Caregiver Feels

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If you are a caregiver providing support and care for a parent or loved one, then this blog post will confirm what you are already feeling.  I want you to know that you are not alone. If you are a sibling or a relative who is across the country and only checking in from time to time on your parent or loved one, let me give you an inside look at differences in your experiences to those of the direct caregiver.

As you know, I am the primary caregiver for my dad, who has Parkinsons’ and Dementia. Every day that I visit him, and it is EVERY day, I am mourning him. From the time I moved him near me after he fell last summer and fractured his pelvis and, I believe, hit his head, he effectively passed away for me. The father whom I spend time with each day, is not the father  I knew. Although from time to time he pops back in to show himself, for the most part, we don’t have many meaningful exchanges.  His language is completely compromised and I spent most of my time being his advocate and making sure he is getting proper and appropriate care. And I make sure to show him daily that I love him and will protect him.

That said, I mourn for my dad every single day.  It is an ongoing, dragged out sense of loss.  Very different than one feels typically upon the passing of a loved one where the grief is overwhelming and complete.  For me, it is a daily experience.  When the time comes that he does pass away, for me, it will be a celebration.  It will be a sense of relief.  I know that no one, unless you have experienced what it is like to care for someone – on the front lines – you may not understand this.  But it is real.  Very real.