PROS…and…CONS of Assisted Living

IMG_0828.jpgI couldn’t resist putting this FANTASTIC photo of my dad and me and in this post.  When the going gets tough…and with a progressive neurological disease, it gets tougher each day, I try to remember the good days. This was one of those.

Today was one of those days that reminds me that there are great things about assisted living facilities and not-so-great things. It’s a good to always remember that it isn’t going to be the same experience as if you were taking care of your loved one. And that can be a GOOD thing because, as is the case with my dad, I couldn’t possibly handle his needs because he requires complete 100% care.  He can do nothing for himself at this stage. If you are thinking about whether to place your loved one in a facility or try to cobble together aids to help your loved one stay in his/her own home, let me give you some frontline expertise.

In an assisted living facility, there is a community.  People need to be around others.  They need to feel as if they are part of something bigger than themselves.  Even if they no longer communicate or independently move about the planet, just having others in the room, having activities going on and other types of stimulation will add years to your loved one’s life.

And beyond years, it will add life to those years.

If you find a place, as I have with Daylesford Crossing, where the staff truly love being with the residents, it rubs off.  Today I witnessed two staff people singing at the top of their lungs as they walked down the hallway.  They were having fun and when the residents see that joy, it transmits to them. I have seen it in action.  One day, the music was on and the woman who is in charge of keeping the rooms clean was literally dancing with her mop to a Motown tune. It was hysterical! When shopping for a facility, try to come at different times of the day and catch the staff who work the different shifts. It will give you a good feeling as to whether this is a place that people come to live…or to die.

Now…the cons of living in a facility.

I have to remind myself that this is not a nursing home.  I specifically did not want to put my dad in a nursing home until it was absolutely necessary. So I cannot expect nursing home care in an assisted living facility. This means that I have to be more vigilant, have more of a presence so that when there is a shift…a change in his behavior, his mobility, or his cognitive abilities, it will probably be me who will see it first. Even though others may notice something unless it is a really BIG change they are not likely to mention it. Why? Because they have (in my father’s case) 18 others they are caring for and there are multiple shifts caring for these people. You’d like to think that they are attentive, but they just cannot be as attentive as you can be.  So don’t assume that by placing your loved one in a facility that you are off the hook. You absolutely need to be present as much as you can so you can notice these types of changes.  Don’t assume they will tell you (they might…but it might be 2 weeks later than you would have noticed).

This week’s events showcased this perfectly. Beginning on Monday morning (3 days ago) I noticed a change in my dad’s abilities.  He was sleeping way more than usual during the day. He had a great deal of difficulty rising from his wheelchair to walk (something he did twice a day, for exercise), really couldn’t walk at all and cognitively he was more confused.  His vision even seemed worse.  I chalked it up to maybe a bad night sleep. So I said nothing. I came the next day in the afternoon to see if there was any improvement.  There was not. Same thing on Wednesday.  I finally started asking around. It turns out the exercise physiologist who works with him to assist him on his walks was having the same difficulty as I was.  Also, the several CNAs who work directly with him caring for him also noticed a change.  No one said a word to me. As I collected my data, I saw enough to concern me.  So I called his doc who suggested getting him assessed.

We did that today and the nurse does not think it is a neurological issue; she thinks it might be as simple as a UTI (something he is prone to get). I normally can tell when he has a UTI because his behavior gets combative (not his usual personality). I wasn’t seeing that.  Apparently, a UTI can show symptoms like I was seeing….so we are off to collect a sample and see what it shows.

The bottom line is I went through an emotional roller coaster these last few days thinking the end was nigh because I thought he may have had a TIA (a mini-stroke) or some other neurological mishap.  I still don’t know for sure, but I feel more confident that it might just be a UTI.

If I hadn’t raised the red flag up the pole, this would have gone on for another week or two before it got REALLY bad.  So, the message is:

STAY VIGILANT.

 

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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.

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.