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I Don't Want To!

pALS and selfish behavior, yes it happens.

As difficult as it is to say, let alone admit it. There are times when we behave like petulant children. I've done it and I often read of others who do the same.

Here's the simple truth; we must consider our family and caregivers along with our needs. Their needs are as important as ours. This applies to adopting tools, techniques, and services, that reduce the stress of care on them.

Stubbornness has no place in the care given to us. It can hinder not just the delivery of our care, but more importantly it can damage the relationship and cause resentment. Resentment is the last thing we need between pALS and cALS. I am very aware that degrees of feelings, such as resentment, anger, and most of all fear, are normal and healthy.

I know first hand the impact a negative affect can have on the person with ALS, causing a strain on all around. Somehow, we have to come to terms with our condition and acquiesce to the methods and devices that will help both pALS and cALS equally.

Things such as, catheters, diapers, wheelchairs, PEG's, lifts and yes caregivers also. We as pALS must put aside our pride, it is the one thing that can actually hurt both us and our care team.

Additionally our family and loved ones want us to enjoy the time we have left, in turn we should want the same for them. Being obstinate and angry helps no one, least of all us.

This is not intended to diminish the very personal choice to forego certain interventions. Many individuals don't care to prolong life in a debilitated state, for alot of reasons. This is something each pALS must decide individually with their family and health care team.

So consider this, when you don't want to accept a tool or device, simply because you believe "what's the point". Consider your family and the strain your choice will create. By making their life just a bit less difficult, you are in fact helping yourself.

There's enough to be afraid of with ALS, don't feed the beast of resentment by being a pain in the ass.


Note: As a caregiver, if you notice that your loved ones behavior is increasingly challenging and out of character, please bring it to your doctor's attention. There may be underlying factors that need to be addressed.

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Thank you for the emphasizing the need to consult a doctor if your PALS’ behavior is out of character. FTD (Fronto Temporal Degeneration) and ALS sometimes travel together. This additional complication requires a completely different level of understanding, patience, and emotional strength to navigate.


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