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

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.