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.    

Tuesday, January 24, 2017

Sooner or Later

Sooner or later, ALS affects a person’s oxygen levels.
This is important to know because there are certain procedures and surgeries that require a certain level of oxygen or they cannot perform it. Which segues into the importance of nutrition and the need to have a feeding tube placed earlier than when it’s actually needed.
My husband is losing weight at a rate that I would envy if it didn’t come with this debilitating disease. Most people who have tried to lose weight know that muscle weighs more than fat. Since ALS causes muscles to atrophy because they no longer get signals from the brain to move, this muscle loss causes the drop in weight. Since diagnosis eight months ago, Bill has lost 15 pounds. That’s without dieting or working out.
Eventually, Bill will need a feeding tube. And eventually came up NOW. His oxygen levels have fallen to almost 50% of capacity, so the ALS team recommended he get the feeding tube before he really needed it. The procedure (if Twilight drug is used) or surgery (if anesthesia is used) is supposed to be one of the quickest, easiest of surgeries.
After Bill’s procedure around noon today, he should get discharged tomorrow morning after the doctor’s assessment, as long as there are no complications. Of course, everyone reacts differently to anesthesia, pain, etc. Other ALS symptoms can pop up after surgery, as in the case of my hubby. He has what’s termed as Vagus Nerve (in very short terms).
Vagus Nerve (sounds like a gambler’s attitude, doesn’t it?) interfaces with the heart, lungs and digestive organs. Bill has had symptoms before, but I never heard a name attached to them until now. 
Bill gets nauseous first, which quickly turns into the feeling that he will pass out. I’ve seen him get shaky and turn ashen, yet his blood sugar and pressure numbers are normal.
This condition caused me to panic. It caused the doctors and nurses to come running when they took his blood pressure – 50 over 39 The crash cart was rolled in, an IV was started with fluids and his bed was lowered. No less than 3 nurses, two doctors and several interns crowded into the room. I moved into the corner and kept quiet, silently praying. 
Good news! The fluids and oxygen slowly improved his pressure, until it stayed at an even keel with normal numbers. The pain went from a 9 to a 2, and his color returned. Whew!!
I know that there will be more episodes that will be scary. I will travel a roller coaster of emotions with each one. That’s one of the ways ALS affects caregivers. It helps to have a strong support group – family, friends, counselors and other caregivers – to maintain sanity and patience. I am lucky to have them all, and a social worker who advocates for you when you can’t advocate for yourself or your loved one.

Hang in there! We can travel the road together…

Saturday, January 7, 2017

Time Flies, Time Stands Still, When You're Grieving

It has officially been eight months since hubby was diagnosed with ALS. The difference in his physical mobility is like day and night. In May, just after his diagnosis was confirmed, we flew to South Padre Island in Texas for some sun and relaxation. He was walking on his own, talking clearly and eating without problems. Of course, his energy wasn't what it used to be, but he went walking along the beach and spent time in the pool like he always liked.
Fast forward to mid-November, when we took a cruise to the Caribbean. We took his wheelchair with us, which was a good thing. The distances from airport entrances through security to gates would have been impossible for him. Luckily, being in a wheelchair made us feel like VIPs, going to the front of lines, breezing through security and getting on the plane first. Waiting to embark on the ship was a nightmare as there was a three hour standstill. I dread to think how terribly uncomfortable, even impossible, the wait would have been without his chair. As it was, he was able to sit the entire time.
Once on the ship, Bill was more in his chair than out. Everything was on "the opposite end" of the ship. The only deck that was "handicap friendly" was the promenade, due to thick carpeting on many other decks, so  I was worn out by the end of the cruise. I think I may have built up some muscles. However, it was a good trip, relaxing in its own ways.
We had an emotional breakthrough on the third day out. After having a breathing, gagging, choking episode, Bill was sitting on the bed with me next to him and I started crying in front of him. I managed to say, "This sucks. We're supposed to grow old together." That prompted Bill to start crying, and the flood gates were opened. 😭 I know it's tough on Bill, but he's the man, the husband, the father. Because of this emasculating disease, this attitude is slowly being stripped from him, yet still he hides his emotions. For him, for us, to cry and mourn together, was cathartic and much needed. We are both traveling on that journey of grief with all its steps, and we are mostly in tune with each other.
Speaking of grief, even if you can manage the attitude of "Living with ALS" instead of dying from ALS, you have started on your way through the steps of grief. You probably started the day your ALS diagnosis was confirmed.  According to my therapist (yes, caregivers need therapists, too), everyone goes through these steps, but in unique ways.
"The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost (are losing). They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief." 
The above site has an abundance of information to help caregivers and those with ALS deal with their feelings of loss.
The site below, while disagreeing with the "stages" of grief, has a free downloadable Grief Recovery Handbook that I found helpful.

The following site writes about overlapping "phases of adaptation" instead of sequential stages of grief with helpful suggestions on recognizing your feelings and moving ahead toward acceptance.
My list is short, but it's a start. After forty years of marriage, I am going to need all the help I can get. I hope you get your help as well.

Tuesday, January 3, 2017

Happy New Year?

I don't know about you, but the last two weeks have been trying. For the record, I love my husband. The knowledge that I am losing him in the near future will never extinguish that love. The responsibilities that I've taken on to ensure that my husband gets through each day will not interfere with that vow of love I gave my husband.

That said, I can honestly say that ALS sucks. It has been a rough two weeks for me,

I'm sleep-deprived and depressed and angry at our situation. It started when Bill caught my cold. His days and nights were filled with "phlegm" issues. During this time, we were up at all hours of the night, several times a night. His swallowing was affected as well, and worsened as the weeks went on. I was afraid he would have to be rushed to ER to help him breathe as well as put the feeding tube in STAT. He could no longer swallow his pills, and I ended up emailing his doctors and calling the 24/7 nurse. It was a sleepless time.

Once the cold was gone, his eating and sleeping improved, but the amount of time I spend getting things for him, driving him to appointments, taking his calls, crushing his pills, helping him from here to there - It seems that I just don't have time for me. Since he can no longer take care of the dog by himself, my daughter and I can never go out together. I am the designated driver, of course, but Bill rarely goes out now.
To put icing on the cake, the contractors aren't finished yet.
Our house is being worked on to make it handicap-accessible. While we now have a working bathroom, the bedrooms are still off limits. We're waiting on flooring. I am getting mighty tired of sleeping on the basement floor on an air mattress. On bad nights I sleep on it upstairs in the living room to be closer to where Bill is sleeping. He has the only bed in the house at this time so he can sleep propped up. He also has a BiPAP machine to help his breathing while sleeping. It's like a CPAP for people with apnea, but it not only pushes the air in, it pulls it out. 

I feel like I'm hanging onto an inner tube in the middle of the ocean.
I'm just floating along, waiting for a boat (finished construction) to rescue me. My life is on hold for now.
This may be what you are or have been going through yourself. So I know I can vent and it won't make you think less of me (at least it shouldn't). It may be whining, but it's whining without losing the commitment to "love, honor and cherish through sickness and in health."
So there, I've typed what I can manage to put into words. I do feel a little better, and in an hour or so I'm taking Bill out to watch a movie. My only regret is that all three of us can't go because someone has to stay home with Wilson. 
But I'll take what I can get. Thanks for "listening." Spouses and family members who are playing the role of caretakers, hang in there. 
Take it day by day. 
Meditate, do yoga or tai chi, or just plain take a deep breath. 
Check out your local park district or community college. 
Google Yoga routines, Tai Chi routines, Meditation and it will take you to videos you can follow at home. I've linked a sample of each.
Call for backup. Another family member. a friend (yours or your loved one's), a home health aide.  
Find a hobby or activity, like knitting, scrapbooking or water colors, and give yourself time each week to focus on what you're doing. Focusing on these activities keeps you from angsting over the road ahead of you. I like to create cards, canvases and altered art. My crafting blog helps me destress, although with the construction my craft room has become an overstuffed closet.
Take care of yourself so that you can take care of him or her. Your health is essential to his.
Finally, grab those moments when life is smiling at you and spend time with your loved one since that time is limited. 
Going to the movies now! Namaste!

Saturday, December 17, 2016

Today is a Good Day

Today is a good day. The house is clean, our path towards getting our house rehabbed to allow handicapped accessibility has taken an unusual turn for the better (a miracle, believe me), and Bill feels good after taking a nap. All those muscle cramps and twitches can tire out a body, so my husband is taking daytime naps now.
Although people living with ALS are recommended to continue their daily activity, ALS works
uniquely with each person. That's why one of the first things my husband Bill and I did was to register with the National ALSA Registry. It is a data source to help estimate how many cases of ALS have been diagnosed in the US. Its purpose is...
" quantify the incidence and  prevalence of ALS in the US, examine risk factors such as environmental and occupational factors, and characterize the demographics of persons
 living with ALS." (The ALS Association Greater Chicago Chapter 
Care Services Support Newsletter, September, 2016) 
From this same Newsletter, a reader can discover news on clinical trials, health and housing grants, symposiums and conventions, fundraising events (like the Ice Bucket Challenge) and more. We hooked up with a rep from the Chicago Chapter of ALSA who clued us in to benefits such as Illinois Property Tax Exemption, the closest ALS Clinics and the benefits of going to them, local support group meetings and veterans' benefits.
Speaking of veterans, make sure you contact a representative of the affiliated organizations (like Paralyzed Veterans of America and AMVETS) to find practically all the benefits you need to be able to keep your house, get it rehabbed for handicapped accessibility, and even get VA compensation monthly. This compensation is tax-free AND in addition to government Disability compensation from your local Social Security office!
If it weren't for the Veteran's Administration, we would have lost our house. The two checks that come in every month have been a Godsend to us. Then we learned that there are  veteran's grants for rehabbing the house. We could never have done this on our own. Add this to the free healthcare and equipment offered by the VA hospitals and we could actually start talking about other things besides, "How are we going to pay for all this?!"
Here are some awesome links to great sites that give you much-needed but little known information for ALS patients and their families: -the best starting place to find local chapters, learn about the disease -Each PVA office is staffed by National Service Officers trained in VA law, benefits, and healthcare. -People helping people 
-News items, personal narratives and first-person accounts from families, 
researchers, clinicians and supporters

These are just a few places you can go to. Google is a great place to choose webites to go to, but the most important one is the ALS Association ( Know the disease, know your rights, know your benefits.
Keep in Mind: You are LIVING with ALS, not dying from it.

We cannot banish dangers, but we can banish fears. 
We must not demean life by standing in awe of death.
 ~David Sarnoff

Friday, September 30, 2016

The Truth Is Out There

My husband, Bill, has ALS, commonly referred to as Lou Gehrig's Disease. ALS has loads of symptoms, and all of them could indicate some other disease or illness. Since there are no true tests to determine if someone has ALS, a person could go bankrupt getting the battery of blood tests, MRIs, EMGs and nerve-conducting tests, among others, This is the reason why a person diagnosed with ALS has a limited amount of time before it ends their life. For instance, Bill went months of physical therapy with little or no improvement before going back to  his doctor. Tests which took a couple of months ruled out most the the "other" reasons for his symptoms. By then, the circumference, or measurement around his calf, read a whole inch smaller than the other calf.
This is due to the muscles not receiving the impulses from the brain that tell the foot to move it.
When we were putting together a piece of furniture, my husband needed help getting up from his kneeling position. That was the first time I realized how useless his foot had become. I literally had to bend his ankle and then press his foot against my thigh while kneeling behind him in order to let him pull himself up. ALS is a tricky little devil of a disease, though. Not everyone starts with "foot drop" like my husband's did. There are many more symptoms that would lead a person to suspect ALS, including:

  • muscle twitching or cramping in arms, legs, fingers or toes
  • tripping or stumbling; missing a stair on the way up
  • weakness in the hands or ankles
  • slurred speech or "nasally" voice
  • difficulty swallowing; more frequent gagging or choking when eating
  • difficulty holding head up or frequent slouching
  • tiredness or fatigue from doing normal daily routine
  • For more information on symptoms of ALS, click on THIS LINK to the Mayo Clinic

Look at all those generic symptoms! Now you see how difficult it is to diagnose ALS. They all fit other illnesses, many of them curable.
And that's when we came crashing into the wall of reality.

(Photo credit:


Thursday, September 29, 2016

How It All Began

It started with a numbness in the right ankle. It didn't hurt - my husband Bill just couldn't pull it up toward his shin. We had both experienced frozen shoulders, so we thought it could be the same but in the ankle. The doctor prescribed physical therapy, but after several months there was no improvement.
Then Bill came home in the middle of the day with the news that he'd been laid off. Looking back to that day, we thought that was the worst that life could hand us...
...except that I had a job. Very part-time, very low pay, but I carried the family health insurance.
Meanwhile, Bill's doctor had him doing all kinds of testing for what I thought was "the mysterious illness." It wasn't until he was told to get a second opinion that he finally admitted to a life-changing diagnosis. A month later, it was confirmed and the bottom dropped out of the world as we knew it.

Next came research--tons and tons of research. We found ALSA, the official ALS Association site. Whole lot of info there - almost too much, so take it in doses. Or zero in on what you want to know right away. Then bookmark the site so it will be at your fingertips (pun intended)  whenever you need it. What I did was to highlight and copy to a Word document the parts that I thought would benefit either our understanding of the diagnosis or suggestions that could help us as we traverse that path.
And don't forget that Jesus won out over the Devil because Jesus SAVES (as in that Word document, peeps!)