Recovery through the Eyes of a Widow

It's been over seven years since I lost Bill to ALS.  Humans are very adaptable, and many live with their grief wrapped around them their whole lives. It's a very personal battle. However, life is meant to be lived, and one can still enjoy moments of happiness in between the grief, until the moments of grief pop in while enjoying life. Journaling, counseling, and choosing the path you lead go a long way toward recovery, happiness and health. 

I follow the path of positivity, not only the craft challenge blog, but the whole idea that positive living, thinking and sharing enriches one's life. I keep numerous journals - a book of lists, of books I loved, of gratitude, of artwork,  and of grief and recovery. These journals have kept me sane and balanced.

So today I needed to finish a poem I started a year or so after Bill's passing. I couldn't quite complete until now. By the time I was finished, I felt a sense of accomplishment in myself. Not for writing the poem, but for the amount of growth I can now recognize in myself. Growth that could not have happened if Bill and I were together still. 

I'm not saying I'm glad he's gone--God, NO! But I am a different person because of his passing, and because of the things I've had to learn without him.

Do I still grieve? Of course I do, but it doesn't burn anymore. It's more like a smoldering fire, lighting up at times. The days between September and Christmas are the hardest, when the heat of grief seems most intense, too many memories, good and bad, to haunt my dreams and make me sad. 

I've learned to welcome sleeping dreams when he's in them, whether an active participant or just a figure in the crowd. It means he's always there. I haven't lost him, not really. He's in my dreams, in my memories, in my daughter's face, in my scrapbooks. He's a part of me. He's not gone, as long as he's not forgotten...

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,

Creative Outlets - Journaling

Dear Billy,
I celebrated another trip around the sun, the first without you teasing me about my age and me catching up with you. I have to say, this last year was a humdinger, filled with trials, terror, heartache, heartbreak, loss, exhaustion and depression. I survived (obviously) but it took serious support and caring from family, friends and professionals.

I also had loads of emotional and creative outlets to release the pressures of my experiences. Because of the people and the journals, the correspondence and the painting, the knowledge that I am not really alone, just widowed, I can go through each day with at least one smile on my face. Most days I smile a lot, and often it's due to a funny or loving memory of you.

I attribute this ability to live mindfully in each moment and by my extensive journaling. Most people think, "I can't write" but journaling is not just writing. It is expressing yourself any way you want or can. I just finished the page above. I like to cut out large pictures of faces from magazines and cut them in half. Then I try to sketch the missing half. I could have left the page with only the sketch, but I decided to fill the blank spaces (I hate white space) with quotes about life and art.
Using things I had left on my desk from a previous craft project, and some colored pens, I poured my emotions onto this page. And it felt GOOD. I don't usually show people my journal pages, but it is so liberating to let out the thoughts and feelings, anger and fear, joy and astonishment, the "whole box of crayons" as I call it.

I can write it out, type it out, cut out magazine words and pictures, for your pages. I don't always have a theme to each page. I've used a leftover  notebook from your Bella's art supplies, and have found some awesome journals at thrift stores (yes, dear,I still shop at Goodwill).  The journal above is a composition book from that women's retreat I went on with Joan, in the good old days when the term ALS was something to do with Facebook and the ice bucket challenge.

I'm coming to the end of this journal, but I am in the middle of several others, so no worries. This blog is a journal of sorts, writing to you even though you've gone on ahead of me, and trying to enlighten and encourage other caregivers how to stay on the path of sanity and positivity. Anyway, I was going to post my new journal page on my crafting blog, Patacakes' Pages, but journaling has helped me through some of the roughest times in my whole life most recently, and some of my readers here on this blog might benefit more from what I write than the crafters who visit me on my other blog.

Either way, I would still like to link up my journal page to the ART*JOURNAL*JOURNEY blog for this month's "Recycle and Collage" challenge. If readers want some inspiration to journal, take a look there. It will blow your creative mind.

But remember, journaling is a personal outlet - you don't have to be a writer, a poet, an artist, a "crafter" - you just need a pen, pencil, crayon or marker, scissors, a magazine and a glue stick. I get a lot of inspirational quotes from Pinterest and print and cut them out for some of my pages. However you decide to journal, have fun with it. Be honest. No one else will see it.

You knew how much I needed to journal, Bill. You gave me the time and space to look through magazines and cut out pictures and words. Sometimes I'd show you a page I'd made, something that I thought would cheer us both up. Most pages I kept to myself. Some are full of hope. Some are dark. Some are full of my favorite things. A few just feature a beautiful, peaceful scene with a single quote on the page - that's all.

Thanks for understanding, Bill. Just one more thing I love about you,

No Regrets...Well, Maybe a Few

Dear Bill,

I spent the morning cleaning the house and biking to music, pretty mindless activities. Which gave me plenty of time to reflect on my life as it stands. If I had to do it all over again, I wouldn’t change anything. I fell in love with your smile. From that first date on the boardwalk at Santa Cruz Amusement Park, through our years in the Army together, through our several moves around the country – that smile made our marriage add up to “a wonderful life.”

I wouldn’t change having the kids, going on family vacations and joining you on business trips, even working on home improvement projects together. Every meal we shared, every argument we made peace with, every job we lost and emergency we dealt with, they all combined to give us 41 years of love.

I’m being generous. The last year and a half of our lives weren’t happy, but we gave it our best shot. From walker to wheelchair to power chair, we still managed trips to Home Depot and the movies, and even took that cruise to the Caribbean. My biggest regret was not being able to visit your sister in Michigan, and going to Niagara Falls. We just waited too long.

It was difficult to see you lose mobility and have trouble swallowing most foods. It got to be terrifying once you weren’t able to speak. Although we had fun with some of your gestures, I could see the frustration in your eyes. I’m sure you could see mine when I couldn’t understand what you wanted. But through the first eight months, I still caught that smile, the one I fell in love with, and I knew we were good. Scared and tired, but good.

It really went downhill when you got the feeding tube inserted. Your body just did not take to it very well. I felt so bad for pushing you to get it. On one hand, it seemed to cause you more pain and issues than without it; on the other, you would have withered away to nothing without the supplemental feedings.

Within six months of the feeding tube placement, you had lost so much weight you couldn’t hardly support your own weight. First we got home care assistance, then we got home health care. I should have asked for Hospice sooner than I did. I’m sorry for my clumsiness, for my breakdowns when I couldn’t lift you on my own or move you in your bed. I needed a lot more help than I ever realized I would have to get.

I know it’s alright now. You’re out of pain. You’re probably somewhere playing cards with Dad, visiting your folks and shooting the breeze with Bob, who went before you. I know I can’t drown in the morass of regrets. Second guessing myself is unhealthy.

It’s over and done with. We did the best we could, with the help of the VA, the ALS Clinic team and our fellow support group members. And we certainly couldn’t have done it without them all. Living with ALS is really a team effort!

Whew, I’ll get off my soapbox now, hon. Just wanted to update you with where my thoughts are going nowadays. It’s been almost five months now, and since the New Year, I’ve got used to saying, ”My husband passed away last year,” not just a few months ago. I don’t know how I feel about that. It seems to put a little distance between us, but maybe it just gives me a little distance from the grief.

Either way, you are always in my heart, in my mind and in my prayers. I will love you for a thousand years,

          Pat    

I Can't Believe I Survived Christmas without You

Dear Bill,
It was a rough holiday season. Wendy and I kept the decorations low-key, and decided to exchange daily positive affirmations, notes of love and confidence-boosting challenges instead of presents for Christmas. It was a loving way to celebrate Advent.

The last of the medical equipment and supplies is out of the house now. Whatever the ALS Association couldn't take for their lending closet, I offered to Nazarethville Nursing Home.

I finally found a facility that would accept the medical equipment and supplies that the ALS Association lending closet couldn't accept. Because of your status as a 100%disabled veteran, we received all we needed from the VA hospital, so I didn't feel right trying to sell what was left over. There are so many people with ALS whose insurance doesn't cover all the things you received to keep you comfortable.

Ha! I just discovered a brand new, in-the-box, suction machine. I have someone I can call who can use this for one of his ALS patients. It's like packing up all the Christmas decorations and a week later finding one that escaped your eye. That wouldn't have happened if you were still around. You had a sharper eye than I have.

Which is just one of the things that tug at my heart. But let me tell you of my successes as the head of the household:

*I winterized the house and yard. I even remembered to cover the air conditioner and the grill! I couldn't find the snowblower gas can, so I got another one and bought the correct oil, then started the snowblower ahead of the snow! I even bought a few containers of the pet-safe de-icer. Don't worry, hon, I didn't put any on the deck or porch.

*I am keeping track of the bills and checkbook. I know, unbelievable but true. I really appreciate your getting me back into our family finances. If you hadn't insisted this last year that I "hover" over you, I don't know what I would have done. Not just the checkbook, but income taxes and online bill paying, the whole works. I would have been over-stressed and panicked by now. In ever should have lost track of our finances, but you did it so well...Of course, that was just an excuse, and I'm sorry now I used it.

Speaking of money, thank goodness you built up our savings account so that I would have a reserve on which to live. The insurance companies are like snails when it comes to paying off life insurance claims. I know we discussed my budget after you were gone, but that was with no mortgage factored in. Until I get the insurance money, the mortgage still has to be paid. Luckily, I can get by for awhile through your thrifty planning by pulling out of savings, at least until the benefit payments come in. Once I've paid off the mortgage, it should be just the way we talked about. Still, I'm nervous about it.

More small triumphs throughout these last three months:

*I put gas in the cars, 

*Take the trash cans down to the street,

*Move the furniture,

*Shovel and blow the snow,

*Put air in the tires,

*Clean out the drains when they get slow, and

*Reset the modem for an update from our wi-fi carrier.

To anyone reading this letter who isn't my husband, you may think these things frivolous or that I'm spoiled. Maybe they are, maybe I am. But to me, these are great accomplishments, to be quietly celebrated.

These are also reminders to spouses who are caregivers. Whatever your present situation, know how your household runs. Know where the money comes from, where it goes every month, how it goes there, and what to expect when your income changes. (Beware, the checks will stop for a time while the institutions and companies sort things out.Make sure you have a slush fund to keep you going until they start up again)

Anyway, hon, that's about it for now. I miss you madly (and not just for the chores LOL). Always in my heart,

Pat

Letters to My Husband - Things I Wanted to Say but Never Did

The focus of my blog is changing. I will still have insights, resources, experiences, information and links to share with you. But grief is something that doctors don't talk about until your spouse or family member or friend is gone. Not even when you have watched him or her slowly lose all his physical capabilities and his dignity and his ability to communicate. 

By the time you learn about grieving, you are steeped in it. You have been through horrors you couldn't have imagined. ALS is like being pecked to death by a chicken, while being gagged, handcuffed and in leg irons. Being a caregiver is like being forced to watch this one day at a time, remembering what he or she could do and can't anymore, and grieving already for this small part.

So, dear caregivers, this blog is more for you than the people who have ALS. I am pushing my way through my grief one step at a tie, one day at a time. I'm not going around it, not ignoring it. 

Besides considering grief support groups and one-on-one counseling, both very helpful and successful, I have a great support system and knowledge of many activities, exercises and resources that have helped to a certain degree already. I would consider many of the exercises that these groups and counselors suggest.

One of these is journaling. Not a writer? First of all, it's not a book. You don't have to show it to anyone. It's for YOU, so spelling and punctuation are out the window. Secondly, who says you have to write in a journal? Half of mine are drawings (sometimes stick people), magazine pictures and words I cut out of magazines.  

My blog for now will be a sort of journal, but I'm willing to share it with you. There were so any things left unsaid. After 40+ years of marriage, what else is there to talk about, right? So I decided to tell my husband, Bill, the things I did not say to him while he was alive. 

If this were on real paper, you'd likely see water spots from fallen tears. His death is very recent, October 15th. But a digital journal won't show you the pain I feel writing some of my letters here. Of course, it will tell you the pain. But it will also tell you how much we loved each other, how much joy there was in our marriage, how many bumps in the road we survived without breaking down. So without more ado, here's my first entry. I hope it helps someone to release some held-in emotions, or gives insight into this monster named ALS.


Dear Bill,

Forty-one years being married is a long time. It's so long that couples start to run out of things to say to one another. When we moved from house to house, there were conversations of mortgage rates, furniture, taxes, decor and yard work.

When we had jobs, we'd complain about rude co-workers or terrific bosses (or the reverse). When we went out with others, we'd mingle but always come back to each other, knowing who was the designated driver that night.

When we started a family, our talks changed to our son's quirks, his accomplishments, the cute things he said, and our dreams of his future. When our daughter came along (surprise!), we shared the experience all over again. The only change was gender and living up in a different state.

Over the years, our lives veered away from each other's. Not too far, but enough to search for things to talk about (other than the kids' antics) over a quiet dinner out. Crafting and scrapbooking took my attention away, while TV took yours. You took off in a career in IT, while I worked close to home for the church, and volunteering in Scouting. You started bowling and I started attending weekend crops. 

Looking back, it seems like we were headed toward a change, and not a good one. But LOVE PREVAILS. Before things got serious, our hearts and minds must have recognized something was amiss. By the time your doctor appointments and testing became more frequent, you confided in me your fears and suspicions. You would have carried the burden yourself as long as you could if we hadn't started communicating better, stepping outside our homemade ruts, reconnecting and becoming more open and more intimate. 

Thank God you told me and we were able to share that burden together. 
Thank God we were able to research and learn as much as we could. 
Thank God for the ALS Association, Disability Benefits, Veterans' Health Benefits and Compensation, VA Housing Grants, VA Vehicle Grants, and Property Tax Exemption. (this link is for Cook County, Illinois; check your own county and state for this)
Thank God for Handicap Placards (must find your own state DMV  website) and thrift stores for things insurance didn't cover.
Thank God for ALS Support Groups where we learned so much more and met people that would become our friends.
Than God for family and friends and social workers and ALSA reps whose caring manner and support and help we didn't even know we needed.

And thank God we worked together to root out everything we did to make this journey more comfortable.

We ended our marriage loving each other more than we did when we said our "I Do's", and for that I am truly thankful for all you gave to me.

Until we meet again,

Pat

Journey's End

Bill's pain has eased, the humiliation and indignities he suffered a thing of the past. His days and nights of suffering from "pressure" sores, constipation and cramps are ended. His deafening silence echoes off every wall of my house.

Bill passed away 2 weeks ago. I happened to catch one of his eyes roll back and right itself so I had my sister, who was helping me change his bed linens, get our daughter from downstairs. Mom was over, so the four of us held his hands while telling him how much he was loved and respected, and what a difference he made in our lives. He died surrounded by love, in his own bed at home, like he wanted. 

The next day, he was going to a local nursing home while I was going on respite. He and I "talked." I couldn't stand seeing the pain in his eyes anymore, with no way to communicate his feelings. I told him that it was okay if he wanted to let go. I could take care of myself. And if he wanted to continue to fight, that was okay too. I could take care of him for as long as I needed to. I guess he was ready to hear those words, because he let go the next day.

I have been grieving the loss of my husband since his diagnosis, while squeezing in every minute of life with him. We vacationed in Texas with our daughter, got a rare visit from his sister and her spouse, visited with our son and his family for a good two weeks, even took a cruise to the Caribbean before he couldn't go to restaurants anymore. We saw more movies at the theater in the last year and a half than we had in the previous five years!

He could still crack a smile until the last week, that same smile I fell in love with 41 years ago when I first met him,. When he lost that smile, I knew I would lose him soon, but the end came unexpectedly fast. I am so blessed to have been with him at that precise moment to be able to gather the family around him so he wouldn’t leave this earth alone.  

You may not see much on my blog for a while except for positive quotes and art, as I find myself at a loss for words. But I’ll be back, with humor, with links, with suggestions and advice.

Here’s one bit of advice I’m giving right now. Bill and I were lucky to have been veterans who received total health coverage from a VA hospital. Because of the diagnosis of ALS, all our equipment and supplies were given to us without cost. Not a lot of people with ALS can say that. So to balance out this inequity, our bedroom is filled with his bed, his equipment and his supplies, ready to be picked up for those ALS victims who cannot afford what can make the rest of their lives more comfortable – maybe even prolong their lives. When the day comes that you or your family member no longer needs the equipment or supplies, please consider going online to your ALS Association Chapter and filling out the donation page. They will contact you to let you know what they can accept and will pick it up from you.

That’s all I got today. Hope your week is going better than mine!

Not Okay

The Future is Unclear

Sorry, guys, I have no words for you right now.

Not Feeling It Today

Attitude and Humor

Would't it be lovely if we could wake every morning with these words on our lips and in our hearts? Lately my first thoughts have been on phone calls I have to make, when I can squeeze in errands, and if I need to refill prescriptions or pay bills. If I'm lucky, I'll have time to stretch before I get out of bed (otherwise I move like a rusty tin man).

However, attitude can make or break a person. I am turning over a new leaf, and following the path of positivity. Lord knows, taking care of a family member who has ALS requires as much positivity as possible. So, my morning mantra now is,

My to-do list? It is more of a suggested path to follow each day. It's not written in cement, because plans can change like the wind without a moment's notice. All it takes is an unexpected nap at an inconvenient time...a day spent in the bathroom with no luck...or too much luck! Instead of being frustrated, I need to let it go, and move "the leftovers" to the next day's "path to follow" list. I read somewhere that if you feel overwhelmed by all the things you "have to do", make your list and check off just three things. That's it, just three. You will feel like you've accomplished something, but not feel pressured to finish it all.

Meanwhile, Bill has declined more rapidly than I imagined. It's only been a year and a half since diagnosis, and he has become too weak to walk. He can stand only with support, but not for long. Thank God we got a shower/toilet chair just in time. Of course, that means that any time he needs to go to the bathroom, I'm on call, morning noon and at o'dark-thirty.  

He has lost over fifty pounds since diagnosis. He is skin and bones, and wears a jacket in the house, unable to generate enough heat to warm his body. When I married him 40 years ago, he weighed 126 lbs, but he was 22 years old and it was all muscle. I miss that man, but at least I can still make him smile. He has a brilliant smile that lights up his face. It's what made me fall in love with him, and what's kept me falling in love with him over the years. It's what I'm going to miss when he's not around.

This photo was taken shortly after his diagnosis was confirmed. We thought we should take a family vacation sooner rather than later. If there's one piece of advice I can give to those who have just been diagnosed, get out and go where you've always wanted to go; do what you've always wanted to do; see the people you've always wanted to meet or visit. 

This disease can sneak up on a person, or it can pounce on one. We decided to take a cruise with another couple, even though Bill took his wheelchair (not powered). It was a Godsend and a curse. Yet we enjoyed the company, the Caribbean and the time away from home and doctor appointments.

Now, Bill rarely goes out except for doctor appointments. most of those are through home-based care. We are lucky to have a handicapped-equipped van, but he doesn't enjoy riding in it. Friends and family don't have handicap-accessible homes. About the only place he'll go is to Home Depot (it's a guy thing) and the medical cannabis dispensary (only because we forgot to put me down as the caregiver on the state application). Yes, they just opened up medical cannabis to people with ALS. It took a couple months to get his ID card, but we live in the strictest state in the US when it comes to licensing. Check out your state's Department of Public Health if this is something you would like to look into.

So at this time in my life, I need that attitude adjustment. I need to stay positive, because I see a lot of negative headed my way. If I don't count my blessings and "let it go", my self-control will be let go, and it won't be pretty. And my hubby won't be there to pick up my pieces.

Losing Control

I discovered something about myself today at a very unusual moment. I was on my hands and knees, Magic Eraser in hand, scrubbing my tile stairs that lead to the basement. In all honesty, they hadn't had a good cleaning in years, even a good sweeping in months. So the steps needed to be cleaned, but it was a chore that I kept putting off. The reasons were simple: I had no time, it's not on my to-do list today, I'm too tired, I have to run errands, I'm too busy, I don't feel well, I'm overwhelmed already, hubby doesn't go down there any more so why bother, etc.,

Yet today I found myself on my knees, actually enjoying the years of grime wash away. I felt satisfied. I felt accomplished. I felt in control.

In control?  I don't look at myself as a controlling person. I am competitive and like to win games, but am not a sore loser. Yet, on my knees with sponge in hand, I felt in control of my life and that was very important to me. I would choose when to clean, what to clean, how to clean, even how long to clean!

Control. Something that ALS takes away from a family as well as the person with ALS. This disease controls how long a person is able to walk and to talk and to swallow and eat real food. ALS controls daily schedules with supplemental feedings, medications, bathing, therapies, naps, doctor appointments and travel difficulties. ALS causes stress in relationships and bank accounts and security and energy. ALS causes fear of death, loss, survival and sanity.

People with ALS and their caregivers lose control of their lives when ALS enters the picture. So when my day's plans get cancelled or postponed due to an ALS-related surprise, I evidently grab broom and scrub pad and the house receives a face lift. It doesn't relieve any physical symptoms for me or my husband, but it leaves me feeling like I can face whatever challenges are upcoming with a calmer attitude.

Speaking of the house, ALS also takes away the comfortable, lived in feeling that a home has, replacing it with hospital bed, wheel chair, walker, ventilator, feeding supplies, equipment, etc. To carve out a more calming space, my daughter and I have started to create a Zen Den in the basement, which is where I am now sitting, typing this post while my husband naps. While it's not as fancy as the one in this photo, it is beginning to look very cozy!

Besides the well-known methods to relax and gain control of your life (and emotions), there are as many various activities as there are caregivers. My girlfriend swears by retail therapy, but limits herself to thrift stores. She says it's more of a wandering than a purchasing experience. Again, she feels in control by limiting where she goes and what she decides she might (or might not) purchase.

My daughter has made a list of activities that she tries to complete each day. It's not really a To-Do list as much as it is a "control your stress" list. Here are some of the things she checks off on a daily basis: Read,  Yoga,  Journal,  Walk,  Watch funny Videos,  Bike/Pilates,  etc., She is almost as much a caregiver as I am for Bill. She postponed her college degree specifically to spend the next few years with her dad (and me) while she can. She is an angel who has put her family before all else, working part-time and living at home for now. I am so proud of her, and she needs control in her life just as much as I do.

What do YOU do to gain a little more control in your life? Do you have a place in your home that you can unwind without the constant reminder that your life is controlled by a virulent, emasculating disease that moves slower than a snail? Try to find someone to help with the care of your loved one and start a new hobby or participate in a sport. Check out your local YMCA, Park District or Senior Center for classes (I'm learning German because my sister now lives in Germany and I want to visit some day). Go online to Pinterest or YouTube and learn how to sketch, water color or alter/upcycle items in your home - that's how I learned how to water color!



It's time to get your whip cracking and master some control over your time, your home, your life - even if it only gives you a half hour of blissful satisfaction. It's worth it! Here are some places you can find online to help you find ways to de-stress and recover control:

       A Place for Mom Blog 

Great ideas and resources for caregivers

Johanna Sawalha/Executive Coach

Lots of great ideas and suggestions on a number of different issues)

Are you on Pinterest? The Caregiver Partnership has

  some lovely quotes to keep you energized, uplifted and acknowledged:

Megan Flutter at Page Flutter 

offers a very unique twist on the to-do list