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.