Wednesday, June 6, 2018

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

Sunday, April 29, 2018

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).


Friday, April 27, 2018

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,


Monday, April 23, 2018

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,


Friday, April 20, 2018

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,


Friday, March 2, 2018

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    


Thursday, January 11, 2018

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