Words of Advice

Tuesday, 24 October 2006

One of the PALS (Patient with ALS) on the Yahoo! chat room wrote this nice response to a CALS (Caregiver) whose mom was recently diagnosed with ALS. Some pertinent words of advice....

"It is a lot to adjust to over a relatively short
period of time! Most of us come dragging our feet and
demanding to have "proof" that we really need
this...equipment, change in life style, medication,
etc, etc.

Most times, we only agree to the changes when we are
pushed against the wall with none or few other
options.

In your mother's case, she has barely had time to
adjust to confirmation of the diagnosis, and the
changes that will take place in how she lives her
life. She is already dealing with bi-pap, PEG tube
feedings plus all the thoughts and feelings that rush
to the surface in situations such as this.

You don't say how old your mother is, but that's a
pretty full plate for any age to deal with. I would
make the following suggestions for starters:
Don't minimize what she is dealing with or label it as
depression or anxiety. These are her very real,
gut-wrenching feelings, concerns, grieving over things
that may never be, agenda of things that need to be
resolved, decisions that need to be made, etc. It is
pretty overwhelming.

Instead, assure your mom that you plan to be with her
all the way in this journey; that your family will be
there for her and love her no matter what happens.

Most of us convince ourselves that decisions about
end-of-life are a looooong way off, and there is no
need to think about or tackle them right now. Your
mother, is sifting through the decisions she may need
to make, trying to arrive at conclusions, wondering
how her family will react, etc.

Let her know that when she is ready to talk about the
disease, her feelings and thoughts, you are always
ready to listen. Allow her to make INFORMED
decisions. This is her life, her disease, and her
decision. Your job is to help her get enough
information to choose what is best for her. Then,
support her decision. She is the one who will
experience the struggles, the fatigue, the choking,
the inability to care for herself in the most basic
ways, the inability to eat a meal with her family, the
inability to kiss her children, or say I love you, or
I'm sorry, or a host of other magical phrases. Do not
assume that you can choose for her. Give her the
dignity of making her own choices.

Be creative! Create opportunities to make memories
for your mom and your family. Tell your mother often,
how you will never forget when...; you will always
remember..., record her voice, etc. (Sometimes one of
the greatest anxieties is that we will be forgotten
and our lives will have been insignificant. )

Do soothing activities with your mother. Give her a
gentle massage, listen to her favorite music, look at
old photo albums. Talk softly about things other than
the disease. Give her a break from it. It is really
difficult to deal with ALS 24/7--especially in the
beginning.

As we have more experience with Uncle Lou, we are not
running so scared every time he blinks his eyes, and
we are better prepared and are more adaptive to the
changes that are required.

Get her involved in an ALS Clinic near-by. The
support they offer to her and to you is invaluable.
The care she will receive will be second to none. The
resources they can offer will make living with ALS so
much more doable.

Having the diagnosis of ALS can actually be a blessing
in disguise! We are put on notice that our business
needs to be taken care of, we need to make some
important decisions, and we need, most of all, to
spend the rest of our lives LIVING every minute we are
blessed to have. (The true tragedy of ALS is to spend
the remainder of our lives dying.) For many of us,
the quality of our life experiences has been extremely
good--in spite of our diagnoses.

That should get you started. Good luck, God bless,
and please keep us posted."