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Doing the impossible?

Dear Terri

I need help.  My older brother has Parkinson’s, and recently he has come to live  with my family—with me, my husband and our 8-year-old.  I thought it would be easy. I’ve always adored my brother. He is ten years older and always looked after me when were children. And as adults we just have always enjoyed each other.

 

But now that he’s living here his PD has gotten worse, I find myself getting frustrated with him, and then I yell. And then I hate myself.

There’s got to be a better way.

Signed,

Turning into an Old Yeller?

 

Dear Old Yeller,

There are a lot of things that can cause  us to yell: fear, frustration, anger, for example.

But one thing they have in common is that they come from being emotionally shocked, or stirred up in some way.

 

I think that you are yelling at your brother in part because your long-accustomed way of being with each other is no longer working.

 

PD has changed him, and will undoubtedly change him some more.  And to continue to have a well-balanced relationship with him, you will have to change too.

 

Having to change, and then to change again, and then again, is a large burden that caregivers bear.  It means we are constantly working hard to support healthy communication with the PWP.

 

You know that PD is an in-and-out kind of thing, one minute he’s his old familiar self and then the next he’s doing something that seems, well, just nuts. 

 

Like putting the milk in the oven instead of the refrigerator. Or saying that he took the morning’s pills – and you find out he took a whole day’s dose at one time. And then it’s no surprise that you might yell.

 

It’s natural to be shocked and to yell when a carton of milk has spoiled, or you now have to take time to call his doctor about a possible overdose.

 

But to be a more comfortable caregiver it’s important to shift from “yell” to “tell.” 

 

We yell as a reaction to something. 

 

But as you come to understand what your PWP is losing, you’ll start to shape and direct his behavior—you’ll tell.

 

And I do mean tell. Gently, lovingly and directly tell your brother what to do, when to change what he is doing, what you can and cannot do. 

 

If you ask,  that suggests that you are giving him a choice.  And while it might feel totally unfamiliar to be telling your big brother what you need and how to act, this is necessary.  You are filling in for his lost abilities, and doing things that his brain alone can’t do any more.

 

As you recognize that unpredictable behavior is just part of PD, you’ll have fewer expectations that things will always make sense.  Then you can be curious rather than surprised at his odd or irritating behavior.

 

You’ll learn to check the oven before you turn it on, you’ll start to dole out his medication one dose at a time.

 

No question it’s a lot of effort to be a PD caregiver.  But I believe that the sooner you come to expect the unexpected, the sooner you’ll be able to just “tell” your brother when something he’s doing isn’t OK. (And you’ll know not to expect that he’ll remember what you tell him.)

 

And you can learn other strategies to help in your caregiving life when you check out my 21-day Renewal and Resilience program.  Subscribe to this month of daily emails. You’ll find your way to a more comfortable and more effective caregiving life.

Hugs x 4,

Terri

 

Dear Terri

As PD progresses how do you decide if it is time  for memory care?

Signed,

Is it now ?

 

Dear Is it now,

If you are asking this question the chances are that your PWP already requires memory care – and you are providing it.

 

Web MD – a reliable online information source—lists some things that suggest a need for a memory care facility;

·       Managing financial matters that the person once managed independently

·       Managing neglected hygiene and housekeeping

·       Keeping the person safe from wandering or injury

·       Managing the person’s health care – keeping track of medications, making medical appointments, reporting s

·       Helping the person keep track of time- to recall recent events and even their own past


If you are managing some or all of these things, then you are already providing memory care for your PWP.

 

That means that you’re not asking a whether question about memory care but a where and by whom question. And I think that helps to clarify things.

 

So now let’s dig a little deeper into your question.

  • Can these memory care needs be met in the person’s current environment.

  • What is the impact on you and others as you provide this level of care? Can you keep doing this? Do you want to keep doing it?

  • Can you hire additional help to provide memory care at home?

  • Are there others who want to share the job of providing memory care in the person’s current environment?


Then the tough questions remain.

  • Have you already explored what resources are available in your community?

  • What are the costs of these facilities?

  • Have you already arranged the person’s finances and your own to cover the cost of memory care?

  • Have you visited these place—on your own, or with your PWP?


I hope that you started exploring these last questions long ago.  But if you are just starting out you might need some resources.

 

The US government has created an Elder Care Locator that might get you started.  And this online site (funded by a pharmaceutical company, though they aren’t selling anything here) is useful for exploring financial resources for supporting a loved one's care.

 

And then, one more thing to think about

 

You may have made the common but impossible promise to your PWP. The one that starts “I will never…” Of course, when you made that promise,  you could not know what would happen over time. 

 

So if you promised to always keep your loved one in his or her home, you may have to just “take it back.”

 

But how do you say it? Maybe something like this:  

 

“I know that we thought that I’d be able to take care of you without needing help.  But sadly, it turns out that we do need help.

 

And with that help I will always be able to --- spend time with just the two of us – or, watch your favorite TV show with you--or give you back massages or –(whatever things your PWP and you have enjoyed together.)”

 

Then follow this up by saying “I will be by your side. You will never have to face this alone. I love you.”

 

That’s the important promise—not who will help with incontinence, or cook the dinners or mop the floors—but who will be there to love and comfort him.  And that is a commitment you can make.

Hugs x 4,

Terri

 

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