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,


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,


Thursday, December 14, 2017

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,


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