Mourning Your Loved One

Is it ever over? Death is death, but it gets better.

There is one kind of consolation even before death — you can arrange to donate your PALS' brain to research, and any other organ/tissue that someone in need can use. Check with your local university, google, and every region has an Organ Procurement Organization.

Rituals
Rituals can begin with the celebration of life. Some CALS have distributed offerings to attendees, such as a seed packet for someone who loved plants.

Some CALS set up a mini-shrine in a living room, study, or bedroom, with small objects about and by the person who has died.

Another idea if the person is cremated: save the ashes, scatter some each year in a place they did or would like or want to be a part of (creeks, other family members' graves, oceans, mountains, waterfalls, etc.), bring back an object such as a rock or plant from that spot. Other family or friends might wish to do the same. There are usually plenty of ashes.

Note — if scattering in a questionable location, watch for security cameras; there is a high index of suspicion around people scattering unknown substances, however innocent and organic yours is.

You can use the ALS Forums and r/ALS for remembrance listings if you choose. If you post an obituary on line, it's nice to include ALS as the cause of death because that helps awareness.

How long will this last?
We like to say each of us has our own timetable for mourning. That's very much an oversimplification. Expect not some kind of smooth journey past grief, but rather intermittent periods of anger. overwhelming grief. helplessness, guilt — wishing we had done more of something, not done something, done less of something. it is impossible to have been a CALS and lack regrets.

Bear in mind, though, the same would be true whenever and however, someone died but we don't always realize that because for many of us, this loss is the most dramatic death we will ever suffer.

And so we forget that if our spouse or partner have lived years or decades longer, we would still feel regret. The odds are they would have died of one or more chronic conditions that we will feel we could have addressed or better —that we could have taken the cinnamon rolls away from them when they were 25 or 35 and they wouldn't have died of a heart attack etc.

But why does it last so long?
The ALS diagnosis itself is so devastating and yet rare, that we're still processing that while processing the death. Unlike heart disease cancer, emphysema, diabetes, where we can say, well, millions of other people have had the same, the same isn't true of a disease as rare as ALS.

In addition, unlike diseases where we can see the effects of smoking, drinking poor diet, lack of exercise, ALS causes are less clear.

In fact, the evidence continues to suggest that people with ALS are athletic, motivated, busy, contributing to society. I remember reading a quote from one ALS doc to the effect of "it's always the nice people." So it's all the harder to accept that this lovely contributing "good works" type person is now gone from what is justifiably referred to as the worst death in medicine.

However, all these reasons to follow can't be a framework for wallowing for the rest of one's life. Because this person that you mourn would want you to contribute, would want you to help others as you probably already do, would want you to work on something meaningful to you and to have a good rest of your life.

What happens to other CALS?
Some caregivers have found love again. Some have found new types of work, new passions, or returned to what they were doing. Some have founded charities in the names and missions of their loved ones. Some have children that they need to continue to parent and those children are sadder and wiser as a result of their ALS experience. They will make contributions and find empathy within themselves.

That, too, is part of the legacy that your person with ALS has left to the world — whether adults or kids, they have left someone besides you, well, a different person.

So you may be at peace one day and extremely angry the next. Know that when you rant and rave about something that you later realize is out of proportion. That can be simply projecting your anguish about a life cut short and with the impact on so many people, and that is normal and natural.

What about counseling?
If you need counseling to feel better about your feelings, to put your feelings in perspective, or to simply channel them better into something that you consider more positive, then by all means do so.

However, just as counseling is not necessary when you are caring for someone with ALS so is it not necessary when you have stopped caregiving. The odds are you had more than a year to process that trauma. And though it can never be completely processed as the preceding section notes, it can be self-managed if you choose and are able to do so.

What is the best direction when you're stuck?
The only best practice for mourning is to keep your feet moving forward in a direction that seems positive. Obviously, a direction that sets you toward substance abuse, mental illness or suicide, or neglecting your health, children, or financial situation is not.

Your PALS wouldn't want you to spend your life reliving their death. They'd love to see you live the life they wanted for you -- happy, healthy, productive.

But apart from that, mourning is what you make of it and there really is no beginning or end. From the moment we commit to someone or hold their hand, the possibility, if not the inevitability of loss unless we die first is real to most of us. That's why we say when someone opens the door to leave, whatever age they are: "Be careful."

You may not be a person who mourns on a conscious level forever. You may essentially dress your wound with all the good things that you have yet to do in this life. You do not owe an explanation of your feelings and how you are dealing with them, to anyone but yourself.