Sunday, October 29, 2017

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!


Friday, October 27, 2017

Monday, September 18, 2017

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.

Monday, August 28, 2017

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 and 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:

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






Wednesday, March 22, 2017

A Day in the Life...


Now that my husband has recuperated from his peg placement surgery (feeding tube), our days have fallen into a routine for the most part. Bill is trying to maintain his present weight, so he starts the day with a tube flush and a feeding. He can do this himself, which lets me sleep in some mornings.
When I do get out of bed, I hit the floor running. I make his coffee, which includes adding a thickening agent so that he can swallow it without choking. . Thin liquids often "go down the wrong hole" and cause him to gag and choke. My time is then directed toward our dog, who needs a walk to take care of "digestive" needs before he gets breakfast.

Speaking of which, I eat my breakfast while Bill shaves and takes his shower. I am so lucky he has the use of his hands and can still shave himself and brush his own teeth. I am also fortunate for the VA grant which allowed us to rehab our bathroom so that our toilet and sink are at the optimal level for wheelchair access, and the shower is a wheel-in with hand-held controls, grip bars and a wide bench.



Once Bill is dressed, he needs me to moisturize his feet and put his socks on. Then I place his feet in his AFO's, or Ankle/Foot Orthotics, so he can walk. He still uses the walker around the house but the AFOs keep him steadier on his feet. I grab up Bill's laundry basket every other morning and do a load, empty the dishwasher and put the breakfast dishes in and clean the kitchen.

Now we can go out if we need to. Bill mostly only goes out to doctor appointments and the movies. If we don't go out, I sit down and check my emails, check the to do list I made the night before and take a shower.
Throughout the day, I will get things for Bill - water bottles, medicine, snacks, meals, turn the heat up, turn it down, tie his shoes, take off his AFOs, find a DVD - the list is endless, the interruptions constant. This is not a complaint, it is a way of life, a day in the life of a caregiver of a person with ALS. I get tired sometimes, I get frustrated, sure, but after forty years of marriage, those wedding vows are still fresh in my mind. He is my soul mate, my life mate, and I will cherish and honor and take care of him until our time together ends.