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 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:

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

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.    

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…

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." 

(RecoverFromGrief.com)

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 Grief Recovery Method

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.

Caring.com

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.

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!