Tag Archives: dementia

. . . And so life goes on.

For the past five years my life has been filled with caring for my husband Craig who had dementia. On December 12, 2018, he departed this life. His passing was a beautiful experience for me. He was able to remain at home as I prayed he would.  Although people from hospice came every day, Craig and I had lots of time together. I will always cherish those special moments.

As you can imagine, this has left a huge hole in my life. As I have thought about what I want to do now, I came to realize that there are two dichotomous paths I could take–neither of which would be the way to go. I could simply do nothing. After all, I’ve earned a rest. For five years, I have put my life on hold. The other path would be to try to do everything. Every day I see more opportunities and possibilities. But I realize I must be careful not to take on too much as a way to fill the void. And so I am proceeding with caution and prayer, seeking to discover what I am really being called to do.

One thing I know for sure, I will keep writing the Handy Helpers books. I finished book five in November, but the manuscript is still in my computer. Now I’m ready to publish it and get to work on book six. I am toying with the idea of writing a book about my experiences as a caregiver. I plan to do a little research to see if the world really needs another book on that subject. I’ll let you know what I find out.

I am also recommitting myself to writing this blog. I have sadly neglected it over the past year. It is my intention to have a new post each week.

Yesterday, I wore a pair of boots I hadn’t worn for a while.  The laces of the left boot had been tied into a dozen tiny knots. Stuffed in the toe I found one of Craig’s Megablocks.  As I struggled to untie the knots, it occurred to me that I would never again find this shoe in that condition. For a moment I considered leaving the knots and wearing something else. Then I remembered that every day I am surrounded by hundreds of reminders of Craig.  He is still with me in so many ways and he always will be.

I have locks to be thankful for.

Locks may seem like a strange thing to be thankful for, but for me, locks are my life. Locks help me protect what I value as my husband has reached a stage where he is into everything.

I am sad at times, when I think about how Craig and I have built a life together over the years and little by little I see it going away. It has become my role to keep things together as Craig is busy taking them apart. Today, I replaced a door knob on a bedroom door that had been locked and unlocked so many times that the lock wore out. Then, in the kitchen, I installed child-proof (and I’m hoping Craig-proof) fasteners on some cabinets.

Sometimes, I have to laugh–crying is not an option. A few weeks ago, I stepped out of the shower. As I was drying off, I saw a shadow going across in front of the window. I knew it was Craig and he was carrying something–it was my clothes–the clothes I laid out on the bed to put on after my shower. Not wanting to shock my neighbors by going outside wrapped in a towel, I took out other clothes and got dressed. It took me a while to locate everything. I found my underwear on the propane tank.  I not sure what the man from Santa Fe Propane would have thought if he got there before I did.  Now I lock the bedroom door before I get in the shower.

Nothing is really safe, and once Craig fixates on something, the only thing I can do is lock it away, especially valuable things like my china. While I lock away the things of our life together, I am reminded to also lock away our precious memories. It is my job to preserve them. I must remember that Craig was not always as he is now. Even now, he is a sweet, loving man. But I must not forget that through most of his life he has been a strong, brave, skilled,  smart, creative, thoughtful, generous and caring person.

Every day is an adventure.

It has been nearly four years since I retired. I’m not really sure how I thought my retirement would be. But I’m pretty sure that I would have attacked retirement just like I have every other stage of my life–full steam ahead and don’t look back!  In no time at all, I would have taken on enough commitments to fill a forty-hour workweek, and beyond.  Fortunately, our current situation has saved me from all that. It has helped me to learn to live one day at a time–not thinking and planning for a future–but enjoying each moment of today.

I say, “our situation” because whatever we face, we are in this together. I know that friends and family members think  what I am dealing with is very challenging. But I am not sure that I have the most difficult challenge. Craig is not able to articulate what he is going through, so there is no way to fully understand. But it must be frightening at times to face a world that he doesn’t seem to fit into any more. He should know how things work and what to do, but the fact is he doesn’t. He doesn’t understand why I have to wait at a red light. He doesn’t understand why he can’t open a package of food in a store and eat it without paying. I’m sure he has no idea why I’m upset when he does that. It must seem to him that the world is a very confusing place.

That’s why we are spending more and more time at home. He is comfortable and confident there. He marches through the house saying , “Hup, hup, hup, hup! He goes out the back door and around to the front door where he rings the doorbell over and over. While this is annoying at times, it seems to make him happy.  He roams our acreage and finds things to entertain himself, giving me a chance to do what I need to do. This is the world he likes to be in–our world.

Craig’s brother, Mark, stayed with Craig for a few days while I attended docent training at the Highlands Center. Mark described it as “hours of butt-numbing boredom interrupted by seconds of gut-wrenching terror.” I agree there are times when things get a little scary. Like the time Craig followed the claims adjuster up the ladder onto the roof. It was probably only a few minutes, but it seemed like hours trying to coax him back down the ladder. Then there was the time when he put the grill cover back on the gas grill while food was cooking on it. Or the countless times when I’ve lost him in stores and amusement parks and while hiking.

Yes, I agree with the terrifying part, but not the boredom. I have plenty to do around here. Just in case I might get bored, Craig keeps me on my toes. There’s always a mystery to solve– Where is the power cord for the television?  Why did he squirt chocolate syrup all over? What happened to that screwdriver I was just using? Bored–NEVER! As I like to say, “Every day is an adventure.”

Falling in love again on the high seas

Scan_20160111As I mentioned in a previous post, Craig and I recently took a fifteen-day cruise to Hawaii. It was a trip we had talked about taking for many years. I must admit I had some legitimate concerns about my ability to handle all the responsibility  and make it a wonderful trip for both of us. In January, we took sort of a practice four-day cruise to see how it would go. There were a few glitches, but I thought I had a plan that would assure smooth sailing.

Shortly after we sailed I lost Craig. It would be over two hours before we saw each other again. During that time the captain held the required muster. This involves all of the passengers reporting to their muster stations. I was sure Craig would show up there, but alas he didn’t. Security was looking for him everywhere, but couldn’t find him. Finally, Craig went to someone for help–something he never does. We were reunited just in time to get dressed for dinner.

During the night, Craig kept walking out of our cabin. I was asleep and didn’t know he was gone until the security guard knocked on the door. This happened twice. The third time, I noticed he was gone and went out to find him. Just as the door closed behind me, I realized I didn’t have my key card. I found Craig right away, but we waited for an hour for someone to open our door.

The next day, our cabin steward suggested that I decorate the doorIMG_0512 so Craig would be able to recognize it. I took his advice and Craig never got lost again.  As usually happens on any vacation, there were a few other problems, but after the first day and night things went pretty well.

Our trip was as wonderful as we expected. Hawaii was beautiful and we went on some great excursions. The most unexpected part of the trip was how our relationship changed.  Because Craig has dementia, most of the time I feel more like a caregiver than a mate.  But with so many days to be together away from our daily cares and responsibilities, it seemed like romance crept back into our relationship.

Ten of our fifteen days aboard the ship were days at sea. That meant that we had to find plenty of things to do in order to fill up the time. We spent time relaxing, of course, but we are active people and like to do things. We went on a digital scavenger hunt, and took cha-cha lessons. Craig was a good sport about everything we did–even dressing up in an ugly sweater for a photo. On previous cruises, I had encouraged Craig to enter the hairiest chest contest. Although he is well endowed in that department, he would never join in. On this cruise, he chose to participate. Although he was not able to remember all the things he was supposed to do, (He did swing on a pole and dance with one of the judges.) he did his best and I’ve never been prouder. Little by little I caught glimpses of the Craig I fell in love with fifty years ago.

Although Craig and I tell each other “I love you,” we were not as affectionate with each other as we had been in the past. The cruise reignited the passion in our marriage and that has continued now that we are home.

Having a partner who has severe memory problems makes going on a fifteen-day cruise seem like a huge undertaking. But moving out of our comfort zone and taking a chance has wonderful benefits as we discovered.

For better or for worse

2013-07-19-1616-06For better or for worse . . . I don’t know if that is still a part of wedding vows these days, but I do know it was a part of mine. During nearly forty-five years of marriage, that promise has been tested many times. But never has it been more challenging to live up to those words than it is now.

For better–We are both retired which means we have lots of time to spend together. We both enjoy excellent physical health which allows us to go on ten-mile hikes to the tops of mountains or twenty-mile bike rides. We have time to do all the things we’ve always wanted to do.

For worse–My husband Craig has dementia. He was diagnosed two years ago, but everyone close to him knew he had problems long before that. For the first year after his diagnosis, I urged him to force his mind to remember things like the day’s date or where we were going.  I was convinced that if I were in his situation, I would be like Dylan Thomas, and “not go gently into that good night,” but I would “rage, rage against the dying of the light.”

Having raised a child with Down syndrome and devoted thirty years to teaching special education, I was sure that I had all the patience and skills needed to get Craig through this.   Like any good special education teacher, I came up with strategies to help him cope with his limitations. After all, I had spent most of my adult life helping people see the light at the end of the tunnel. It took me a long time to realize that Craig is going down a tunnel that does not have a light at the end of it.

Craig’s neurologist keeps reminding me that Craig sees the world differently.  I know I can never see the world the way he does, but I do think I’m beginning to understand his world a little better. Last Friday afternoon, Craig was roaming around our property, seeming a little restless.  I handed him the keys to my car and suggested that he get the mail. He isn’t supposed to drive, but driving a few feet down our dirt road seemed harmless.  I kept watching out the window for him to return, but he didn’t. Concerned, I jumped in the truck and drove around looking for him. When I couldn’t find him, I returned home and dialed 911. As I was talking to the operator, it occurred to me that I knew where Craig had gone. He had received a reminder card from the dentist for an appointment later in June. I had shown him that it was already marked on the calendar, but he carried that card around all day anyway. Dates and times don’t really mean anything to him. All he knew was that he was supposed to go to the dentist and I didn’t take him there. I told the 911 operator where I thought he might be and sure enough, that’s where he was. A very nice sheriff’s officer followed him home and talked to him patiently about not going off by himself and worrying his wife.

On the bright side–For the first time in our married life, we can’t really plan for the future. But that allows us to live in the moment, making the most of each day. Craig follows me around, which can be annoying at times. Someone called him my parrot because he repeats everything I say. What wife wouldn’t want a husband who agrees with her every word. I’ve given up on the idea of a place for everything and everything in its place. Things go missing daily. Sometimes they reappear, but often they are never seen again. It’s amazing what you can learn to live without. The phone has been gone for a few days, but the good news is, I found the television remote while I was looking for the phone.

Since June is Alzheimer’s and Brain Awareness month, I’m offering this with the hope that someone will find my words helpful. It is being published with Craig’s permission.