Difficult to Believe

It's hard to believe that we're coming up on the second anniversary of my husband's death, care of ALS. I can truly say that I have changed significantly since he passed. My lifestyle, my daily routine, my plans, even my own bucket list!

The first year was rough, but my daughter and I were also living through a kind of numbness. Yes, we cried often, especially when coming across events, TV shows (even commercials) and items hubby wore or used. The memories were bittersweet.

My daughter's trigger point is when co-workers (young adults) would complain about their dads. Her biggest regret is that Bill won't be around to walk her down the aisle should she choose to marry. Ever.
Of course, TV is a curse and a blessing. We often watch shows together at night, and sometimes the endings bring about a trigger that will send both if us to the tissue box. Even commercials and YouTube videos can spring a trigger on us.

These moments, although rough, have also helped us talk out our thoughts and feelings, and the "Humpty Dumpty Egg" that is our grief is slowing being patched up, bringing us some closure.

My trigger moments come when I am trying to go something that was Bill's job, like changing the garage door code or finding needle nose pliers. I have been known to close the garage door, scream and burst into tears because he isn't here anymore. As much as my hubby tried to prepare me for a time when he wasn't around, there are so many things we missed! Then again, once I accomplish something like patching a hole in the wall or re-setting the modem, I feel such a burst of confidence and empowerment.

In the last several months, these little "victories" have inspired me to climb further out of my comfort zone. Last year, I chose to enter a few pieces of artwork in an exhibit with other veterans. It was the first time I allowed other people besides family and friends to see it all. I've done the same thing this year, and have even expanded my "hobby" into a job of sorts. I now facilitate craft workshops at a local store, earning a paycheck each time! It's only once a month, but that is enough for me, because I have also been attending the community college.

I'm taking German language classes. I just registered for German 201, having earned an A in 101 and 102. Besides having a high percentage of German in my DNA (that's my Gram in the photo), my sister married a German national 3 years ago and I am taking a trip to Berlin to visit them this year!

My daughter has also been making strides in her work and social life. She keeps pushing herself to do new things and has made new friends and achieved new goals. I am so proud of her!

One last change, which I recommend to you all: keep connected with your family and friends. Tell them often how much you appreciate and love them.Get together more often, if you can. Because you never know when the last time you talk or see them will be the last time you can. I learned that lesson the hard way when I lost my best friend a couple months before Bill passed away. Her death was sudden and unexpected - I just went to a lawn concert with her the weekend before she died.

So there you have it. Almost two years out and still learning, still growing, yes, even still grieving. But taking each day as it comes, as a gift, nothing more, nothing less.  And just like the sunflower, still blooming...

Courage under Fire

After my experience being my husband's caretaker while he slowly passed away from ALS, I went through many moods and attitudes - strength, patience, fear, humility, faith, hope, heartache - but mostly I learned courage.

It is supremely heart-breaking to watch a loved one deal with a long, debilitating and fatal disease.
...to know that what you thought would last forever now has a specific time limit.
...to try to cram into a short span the things you were "saving for", "dreaming about", "putting off until tomorrow for".
...to say the things that you haven't said yet, or to not say the things if this disease hadn't hit.

My heart goes out to everyone whose illness or disease has a definite and final end. But in my heart I have a special place for those saints - wives, parents, children, siblings - who choose to care for them; to do the things they can't do anymore; to be their advocate; to become their nurse, translator, chauffeur, cook; to cry in secret so that they don't give up hope; to see them hurt, afraid, and weak.

These people have Courage. I'm not saying they don't rant and rave against their circumstances. It would be a miracle if they got through a day without crying, losing hope, being so tired they don't want to get up in the morning. But they do, despite the pain, the work, the loss. They are true unsung heroes.
So to all these heroes who fight the fight with their loved ones, this card is for you. You may not know that the Sunflower is the national symbol for ALS Awareness:

 “The sunflower,” (Shirley Hoffman Schmelzle) explained, “stands tall and strong, 

ever hopeful and ever reaching higher.  Sunflowers grow in clusters 

and support each other as they grow, just as family, friends and community 

offer support to those who live with ALS.”

There are a lot of resources and support out there. Start first with the ALS Foundation, which will have specifics on your situation. God bless you all...

One Year Check-In

I can't believe a whole year has passed since losing Bill. It's difficult to describe where my head and my heart have been throughout all this time, but I found something online that is pretty close. I don't know who wrote it or even where I found it, and if you should know the author of the following,  please let me know so I can give him credit for his writing. It beautifully describes my year:

"As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.
In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.
Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.
Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.”

It's funny that I read this toward the end of my first year as a widow because I've been doing a lot of painting to relax. One of my latest canvases reflects the words above. I'm not saying I'm out of the water. Far from it. The waves are still coming, they're still washing over me. But I'm learning to let them wash over me, knowing it will calm down again, that I'll be alright. 

Things You Need to Know and Do

May is ALS Awareness month. I had the opportunity through Hines VA Hospital to express some thoughts on the difficult journey Bill and I went through, and what being a caretaker meant to me  Please watch this video. Share it, comment on it to others. And if you are at a loss as to where to donate for a good cause, think of the ALS Association. Please.
https://www.facebook.com/HinesVAHospital/videos/1808313812541345/

ALS kills its victims through the slow loss of mobility, swallowing, speech, fine motor skills, strength and energy. It is a humiliating, emasculating, slow death, with little to no time to prepare yourself and others for what lies ahead. There is no cure. There isn't even a specific test to diagnose the disease. A person has to run through months of tests to cross off every other illness before a diagnosis can be confirmed. Months of life on hold, wondering why your body is acting the way it is, living in ignorance, in fear, in nervous angst at what the doctors are testing for tat they're trying to cross out other major life-changing illnesses.

The average life span of a person with ALS is 3-5 years. Diagnosis could take up to a year and a half. People often forget the months it takes to finally get the confirmation. One and a half years out of 3-5. It's difficult to think in terms of "living with ALS" when someone is "dying from ALS". But in between the doctors' appointments, educational counseling, emotional counseling and equipment fittings, the most important thing to remember is the time you have left has a deadline. We all have a deadline, really. But you know yours has been shortened. So what are you going to do about the rest of your life as a couple?

What's important to you and your spouse? Family, travel, entertainment, creativity, financial security for your family? It's time to start a list of the things you need to do, and the things you want to do. Whatever you call it, there's no getting around the fact that it's a bucket list.  

The Things You Need to Know:
$$ If your spouse has been receiving disability checks, not only will they stop, but if you were paid in the month your spouse passed away, they will electronically pull that last check from your account. Almost all checks in their names will stop coming.
You may continue to get checks and electronic payments in your spouse's name. If the bank account is a shared one, do NOT take your spouse's name off for the first year, until you're sure the checks have stopped coming in his name only.
Q If you've always wanted to go to (fill in the blank), do it sooner rather than later. The longer you wait, the more concerned you must be about accessibility and energy levels. If you want to see family members that can't visit you, do it sooner than later. By the time we got the handicap accessible van, Bill could no longer take longer road trips, so he missed out on seeing his sister before he passed away.
6 If your spouse has always wanted to try skydiving, zip-lining, riding a camel, or any other "never-done-before's", do it while he can. Things can change from one day to the next. What your spouse can do today may not be possible next week.

_ Your medical staff is very knowledgeable, but a little homework goes a long way. Bill's gravity bag feeding schedule was getting messed up every time he went to a day's worth of doctor and specialists' visits. If I hadn't read up on supplemental feeding solutions, I would never have known to ask for what's called a Kangaroo pump, where the feedings are scheduled and the food is automatically pumped into the feeding tube (along with the water).
C Think ahead. If you wait until your loved one needs a walker/wheelchair/power chair to ask for one, he or she will be immobile while you wait for one. At the first sign of weakness of the legs, get one, order one, or if you're lucky enough, get fitted for one. It will be there when needed.

The Things You Need to Do:
Will your family survive financially once you're no longer with them to add to your income, pay the bills, or keep track of investments? Know what to expect as far as your budget may be as well as your bills.
Do you have a will? Do you have a Power of Attorney for both medical and financial issues? Do you wish to have a DNR (Do Not Resuscitate)? You can make it as specific as you want. "Yes, trach me", "no to  the colostomy", etc.
Do you know your spouse's passwords to online accounts?
Does your family know who to call for heating and air conditioner; plumbing, car repair?
Do you know where the warranties are for appliances and electronics? Where the taxes and receipts are filed? Where the insurance policies are? 
Where are the tools needed for occasional maintenance? Yesterday I looked all over the garage, knowing Bill had loads of tools, but I couldn't find a putty knife to save my life! 
Do you have your spouse's doctors' names and contact information, medication list and insurance information in case you need to call 911? Best thing to do is have that information in a folder so that it can either be given to the paramedics or brought to the hospital by you. Don't forget a copy of your spouse's driver's license or state ID. Most ER's ask for all that.
Do you have contact information in case you need to notify his or her co-workers, friends and family, should you need to? 



Family caregivers not only have to watch their loved ones wither away day by day; they lose their freedom to plan ahead, run errands, sleep through the night, clean house, have company, cook meals, and take care of the rest of their family. They lose their soulmate, their best friend, their partner in intimacy, their keeper of secrets and memories, their breadwinner, investor, their maintenance man. They lose the person they fell in love with over and over again through the years right up to that last breath.




https://www.facebook.com/HinesVAHospital/videos/1808313812541345/?t=0

Like a Volcano

 Dear Bill,

It's been almost seven months since you left us. I've learned to take care of a lot of things around the house, the yard, the budget, etc. Almost everything from the days when this house looked like a medical center are gone now

And here's a funny story - as I was taking the tarp off the deck furniture (Spring, finally!), what should I find but one last piece of equipment from your journey - your legs!! Or what we used to call your legs. LOL

Remember the AFO's? The ankle-foot orthotics? They were sitting on one of the deck chairs, hidden under the tarp! They gave Wendy and me a laugh over the way we teased you when you asked for them and we called out, "Get Dad his legs" or "Take Dad's legs off."

A good laugh and then a good cry. With good memories come bad ones, I'm afraid. I hated what ALS did to you, did to all of us. It took away our marriage. Our 41st anniversary passed and I didn't mention it because you were in no condition to celebrate or even care. If I had, I was afraid you might start crying, which affected your breathing in a very bad way. So any time I cried, it was alone.

We were supposed to grow old together. You worked your ass off and didn't get to retire. We were going to go to Niagara Falls. We were talking about buying a cabin in Seneca at Woodsmoke Ranch. We could have spent many a summer and fall day there relaxing, grilling, taking hikes in the national parks next door.

It took away your chance to walk Wendy down the aisle when she gets married. She really feels cheated by that loss. She gets angry when a high school co-worker talks about how she hate her dad or how she doesn't talk to her dad at all. She goes off on them and tells them how lucky they are to still have one.

It killed you, not fast, but slowly, taking away your voice, your ability to move, to swallow, to eat, to laugh, to cry, to enjoy life, to be a man, to talk to me. I especially missed the talking. You went from lowered voice to missing consonants to slurring words to hand motions. Of course, we all made jokes about some of those hand motions and got a smile out of you at times.

But the frustration levels on all our parts when we couldn't understand you were heart-wrenching. Your mind was fully functioning, but you had no outlet for your thoughts and opinions and your rage at your fate. But I did.

Remember when I brought you your coffee and just as I was setting it down next to you, it slipped and I spilled it all over the table and floor? Of course you remember, who could forget?! I exploded, screaming at the top of my voice, "F#*k me, f#*k me, f#*k me!" and burst into tears. Your mouth dropped open and you looked at Wendy, who was stone-cold speechless on the other side of the room, as if to say, "What? Who? Huh?"

And I just knelt down and calmly, cleaned up the mess, apologized to you both and left the room to get more coffee. It was like a volcano that had a short, strong burst of lava and then settled down. I guess I needed to get some emotion out, huh?

We all went through a whirlwind of emotions, sometimes together and sometimes by ourselves. After your breathing got bad, it was mostly alone or with Wendy. We couldn't bear to see you cry and then gasp for breath, having to use that suction machine.

Wow, this is such a downer of a letter, hon, but ALS is a downer of a disease, which affects every member of the family. Wendy and I saw a bereavement counselor last month. The hospice organization offers that service for up to a year after your death. We were able to get some emotions out, but I think Wendy and I, having each other, are pretty steady on our own path toward recovery.

We're having your memorial/celebration of life in nine days. I have a lot of things to get ready, and my emotions are again all over the place. But I'm hoping this will bring some closure to Wendy and me. And for mom and Dee. Your co-workers are coming, some of my extended family, neighbors and friends, my co-workers...

You touched a lot of lives, Bill. Especially mine. I had you for more than 40 years, so I can't complain too much. As you would say, "you could, but nobody would care." I miss a lot of things about you, but your smile and your humor I miss most of all. I hope you're keeping them rolling on the floor up there, dear.




Always and forever,

P.S. (I bought that cabin in the woods. I'm closing later next month).

Happy Birthday, Honey

The following post was supposed to be published in January, but never made it past draft status. While "out-of-date", there is information for caregivers that may help  keep their sanity slightly 
longer than they thought they could.  So here it is, four months later...

Dear Bill,

Wendy and I quietly celebrated your birthday yesterday. We started the day at IHOP for breakfast. You loved to go out for breakfast when you could still eat. I'm so glad we decided to go out and try different restaurants before your swallowing got too weak. It seemed that the first thing to go was your ability to swallow easily. Our mornings and nights out to restaurants came to an end within six months of the diagnosis. I missed those outings, but I understood your aversion to gagging and choking in the midst of other diners. Even with all the resources available from the ALS Association  and the ALS Clinic staff at Hines VA Hospital, it got so bad that eating at home was the only option for you at that point.

After breakfast we ran over to Menards for a couple items. I heard your voice inside my head saying, "I like Home Depot better," but I had a gift certificate for Menards so...  Once you were bound to a wheelchair, the only store you would go to was Home Depot. I think you worked hard to come up with things to buy there, but knowing you liked to wheel around the lumber and piping, etc., I tagged along. I think it must have been a sort of escape from the house and the constant reminder of your disease. It was therapy for you.

The same could be said for the theater. When you were still using the walker and the manual wheelchair, we saw movies practically every week. We saw more movies in those few weeks than we'd seen in the whole year before! Thank goodness for half-priced Tuesdays! But again, movies were an escape from our real life situation. For a couple hours, we could forget that we had a deadline.
We went to see the Star Wars movie. It was awesome. Wonder Woman we saw twice. Lots of Marvel movies made our list, too. There were so many others I can't  remember them all.

I'm glad we got out and did so much while "the getting was good". Like traveling. It was smart of us to take that vacation to South Padre Island while you were still walking, and the cruise while you could use the walker. We had so much fun going to the islands with our friends. My only regret is that we didn't get to Niagara Falls, which was a place you had really wanted to go.
The neurologist told us when you were first diagnosed to "go places and do things you've put off and you really want to do." Another way of saying, Get your bucket list out and start crossing off the activities.

The time we had from diagnosis to death went faster than we thought. Even faster was the ability to enjoy things. It took us by surprise, even with the warnings from the clinic team. We didn't go everywhere we wanted to go, visit the family members we wanted to see, talk about the things we should have told each other. Lots of missed opportunities because we ran out of time.

But the time we had was grand while it lasted, wasn't it? Maybe not the last 12 months, but that first 40 years of marriage?  I wouldn't trade that for the world.

Love you, babe,

Working like a Maniac

Dear Bill,
De-winterizing the house and yard. Man, I didn't realize how much work went into getting ready for spring and summer! And add the deck which needs sealing-whew! I have 45 minutes left before I have to get a second coat on the backyard deck and stairs (do you really have only one paint tray??). Then I can say it's ready for your memorial in May.
There are a lot more projects I need to finish before then, but right now I think the poster below describes how I feel.

Sigh, if only...

Take care, my love,