It's been a long time since I've posted here. Almost every day I have an idea for a post so by now, by all rights, this blog should be a pretty thick book. I could make up all kinds of excuses why I haven't written any posts, but suffice it to say other things took priority.

Mom is the main priority. Much has happened since September. It began with a visit from Aunt Pat. That's Mom's sister and she lives in California. She came out with her daughter for a whirlwind visit at the end of September. They were here for an evening and part of a day.

At the time, I was hoping they would come because it seemed like Mom was not going to be here much longer. She had gotten pretty despondent and unresponsive. She had occasional good days, but they seemed few and far between. So Pat and Jeanette made the long haul across country to come to the woods for a visit.

Even though they flew, it was still an ordeal. Hours from California to Chicago; an overnight with son then back on the plane from Chicago to Minneapolis. Next a three hour car ride up to Emily. Fortunately the trees were turning a bit so it was a beautiful drive. Nevertheless, when you are up in years, such a trip can be grueling. Thank goodness Jeanette came as guide, companion, chauffeur and blessed daughter!

Fortunately, it was worth it on both ends. They enjoyed the visit and we enjoyed their company. It took Pat a couple of weeks to recover, but her sacrifice gave Mom new life. It is now December and Mom has consistently had more good days than she's had in over a year. She still doesn't hold conversations much, but she seems considerably more connected now, since her sister's visit, than before.

Pat's visit sparked something in Mom. All the stories from their growing up years were so good to hear. Even when it seemed she was sleeping, Mom was listening and if Pat said something funny Mom laughed. That was like water in the desert. I hadn't heard her laugh in such a long time. She giggled and chuckled. There was light and life in her eyes again.

Mom will not be doing any more traveling; at least not long distances. Trips to the doctor or dentist are about all she can manage these days. I hoped that she would be able to see her sister at least once more in this lifetime. Pat and Jeanette made it happen. I'm so grateful to them for that.

Chances are that none of us realize the impact we may have on another person. Sometimes it's just someone's presence or a word of encouragement or a smile that's needed to turn a situation around.

There are many things to share with you about my journey with Mom. I have a lot of catching up to do. But here's a thought. Dr. Seuss once said, "To the world you may be just one person, but to one person you may be the world." Keep that in mind next time you consider visiting someone teetering on the edge of whatever their cliff may be.

The Face Wipe

The old "face wipe" is something I meant to write about quite a while ago. In a way it's important, and in a way it's not. The face wipe itself is simply that - wiping your face - or in this case, the face of the person for whom you are providing care.

It is easy to assume that everyone always thinks of these little niceties, but I assure you in the daily scheme of things we often forget about the most obvious matters. Have you ever looked for something only to have someone else point out that it is right in front of your face? It happens to just about everyone. When Mom was ill and spent time in rehab recuperating from the side effects of some medication, I saw first hand how easy it is to overlook the small things that make a person comfortable.

When the staff had to transfer Mom from one place to another they would put a strap around her chest and lift her with the strap. This was for their safety as well as Mom's. Occasionally that strap would end up pinching her and because of how they lifted her they couldn't see the expression of pain on her face. I could see it and at those time I would always say something. 

After meals I noticed that unless a person made a very noticeable mess, they seldom got their hands or face wiped off. In some cases that would mean spending the rest of the day with sticky fingers or crusty lips. I'm sure after a while a person gets used to it, but for myself, soiled hands drive me nuts. So I would make sure that Mom's face and hands were clean.

One thing I didn't think about in the beginning of her more intensive care was wiping her face off in the morning and before bedtime. Of course it should be obvious, but sometimes the obvious things escape us. There is the brushing of teeth, getting the crusties out of the eyes and corners of the mouth, personal hygiene and making sure clothes are clean and not bunching up; the usual preparation for the day.

One morning as I stood in front of the sink doing my usual routine, a light went on for me. I have a habit of taking my face cloth and getting it nice and warm and just holding it on my face for a few seconds and doing the same to the back of my neck. I learned this from Mom years ago.

It was summer and she was with me when I was getting prepared to go onstage for a performance. I was hot and grumpy and she took a couple of cool towels and put them on the back of my neck. Then she had me take a cool towel and just hold it on my face for a few seconds. At first I was irritated and ready to snap at her, but it really felt good and it calmed me down. It's a simple thing that I've been doing ever since to keep things in check when I feel irritated and I find it a soothing beginning and ending to my day.

Well, this particular morning it dawned on me that Mom used to do the same thing every morning and night, but now that she wasn't able to tend to those matters alone, the practice had gone by the wayside. "Mom, would you like me to wipe your face?" I asked. She smiled and nodded. So I took her face cloth and dampened it with warm water and squeezed it out good. Then with both hands I held it on her face for a few seconds. I noticed that her breathing changed and a kind of peace seemed to settle on her shoulders. I warmed the cloth again and put it on the back of her neck and she gave a couple of contented sighs.

"That feels good." she said.

It's amazing how tiny, inconsequential things can mean so much to a person. Well, that episode was a long time ago. I now do it as a little ritual and incorporate silent prayer for her as part of it. I also gently wipe off her hands. Somehow I know this little practice is helping both of us to deal with life in the dementia dimension.

A Lot Can Change in A Year

It's been fully a year since I made an entry in here. The last post was actually created a year ago today; I just never got around to publishing it until today. So much has changed in the last year.

Mom is still with us and we are still caring for her at home. It's gotten a little more complicated now that she doesn't walk anymore. Reg has to lift her from wheelchair to bed, recliner, whatever. He's been a trooper as this latest change impacts him significantly. Morning, noon, night and night trips to the bathroom are all dependent on his ability to help transfer Mom. If nothing else, he is definitely getting strong in the arms.

This disease is insidious as it sneaks in and quietly steals one thing after another. We never know when the last day for some particular function is going to arrive. I suppose that can be said of all aspects of life, but right now for me it's made clearest here in the dementia dimension.

One day last fall Mom just seemed to get weak. She couldn't stand up on her feet very well so Reg lifted her into the wheel chair. There were days when we knew she was only up to a few steps so we would haul out the wheel chair and she would manage to walk to it and we would settle her in for the trip down the hall way.

This particular day she couldn't manage the few steps required to transfer to the chair so Reg lifted her up and set her in it. The remainder of the day his help was required to move Mom from one place to another. At the time, I thought it would be a temporary issue. Unfortunately, that wasn't the case. One day turned into a week, which turned into months and now she cannot hold her weight at all.

There's a part of me that fought against this development. I believed if she willed herself to walk, she could regain the use of her legs. I spent fruitless time giving her pep talks hoping to motivate her back into taking even just a step or two. I happen to be a great proponent of  "mind over matter" and I believe that, "As a man thinketh, so is he." In my mind, if Mom thought she could walk, then she would be able to walk. Of course, I just ignored the fact that for the past 12 years she'd be saying "I can't walk" with no evidence that it was so. Now it was true, but for obvious reasons, one being that there was no particular reason for her not being able to walk, I didn't want it to be true.

One time, determined to get her to move from her chair to the wheelchair, I brought her recliner up to the position where she was almost standing and coaxed her into taking a step but her legs wouldn't cooperate. I don't know if she wasn't trying or just couldn't will her legs to move. I don't have my brother's strength to lift her so I settled her back into her recliner and moved it to the resting position. The mission had been to get to the bathroom, but it was scrubbed.

Mom used to be quite the walker. Every day she would walk the trails Dad groomed on the back 40. Even when she lived with me in St. Paul years ago, she would go for a daily walk until one "strange character" as she called him said something to her and from that time on she didn't go out alone anymore. Still, we would go what she called "window shopping" which meant browsing through the stores but not necessarily buying anything and we would get in a little exercise that way.

She used to have a flower garden in the front of the house. She called it her rock garden and summers she would spend tending the flowers there. She had one particular flower that she really enjoyed. She said it was called Blue Fountain. She was quite proud of it as it was the crown jewel of her little garden. Then one fateful day "that old she-dog" (which was a distant neighbor's dog) came and sat on Mom's Blue Fountain and destroyed it. Somehow, that incident also seemed to destroy her joy in working in the flower garden. Amazing how one little incident can have such a huge impact on a person.

It's sad to know that Mom's days of tending her flower garden and walking the trails are over. They've been over for quite a while, but on sweet summer days when the scent of Karen's flowers waft through the house, I think about Mom in her garden. On my own infrequent walks, I think of her and how her daily constitution was to take a walk in the woods.

So what's the lesson here? Again, there are so many to choose from. But the one that stands out for me today is to enjoy to the max all the little things you do. If you're taking a walk, notice everything around you and really take in the beauty. If you're working in a garden, marvel at the wonder of it all.

There's a scene in the movie "American Pie" where a young man videoed a plastic bag caught by the wind. For many people this was an interesting, if weird scene. What's so great about a bag zipping around in the wind? For me, it was an affirmation of finding beauty in the most trivial of things. Living in the city, I found beauty in the strangest places.Long before the movie debuted I enjoyed watching bags dance in the breeze. I understood the amazement of trash caught up in "dust devils". It was trash, but there was something fascinating about the movement of it. I'm glad that I have the ability to see and appreciate the beauty in mundane things. I believe it's a gift. Some would say I am foolish or strange, but that's okay.

Wherever I am, in whatever circumstances I find myself, I choose to see and take in the beauty around me. I will never know which day may be my last to do so. We turn the recliner so that Mom can look out of the front door where she can see some of the flowers that Karen has planted and the little pond and fountain that's in the yard. Most times she just sleeps and when she is awake, it's difficult to tell whether or not she is enjoying the view. I hope and pray, that if she isn't aware of the view before her, that she still has the sweet memories of days gone by when she took her walks in the woods and worked in her flower garden.

Walker Wars

Mom has always been of a rather stubborn mindset. Her dementia hasn't changed anything as far as that goes. It shows up most often on the jaunt to and from the washroom.Sometimes I lead her where she needs to go which also helps speed her up a little, but she really does not care for that kind of help...unless she get "stuck" somewhere.

There are times when I see Mom making a direct beeline for the sofa or the wall and I'll try to gently move her walker in the correct direction. This often meets with a look of disapproval and sometimes an exasperated sigh as well as the accompanied response of a tug on her part to continue in the wrong direction.

Then there is the phenomena we call "the crab walk." Occasionally Mom will choose to walk a little sideways with her walker which of course leads to some instability and increases the chances of a fall. I tell her she needs to walk straight, and sometimes I need to call her name to make sure she hears me and is paying attention. She will then say, "Okay." and continue with the crab walk.

Turning the corner to enter the bathroom is the main challenge. Mom often looks like she's an undercover agent sneaking up on the perpetrator as she moves sideways into the room at a painfully slow pace. This was a battle I used to fight regularly. I wanted her to walk straight forward, she insisted on the crab walk. I would guide her walker in the "proper" direction and she would resist. One night she stopped, looked at me and said, "I'm trying to use my walker but there's something that's always pulling it in another direction!"

"That's me Mom, trying to get you to walk forward instead of sideways."

"Oh, okay," and the crab walk resumed! That was when I decided to just keep an eye on her and let her do it her way. She leans against the wall and the doorjamb for support so it's not like she is really going to fall backwards and I'm there to catch her regardless. Eventually she straightens out - mostly.

It's easy to get frustrated with the situation. On the other hand, she is still mobile and that's a good thing. The lesson here, out of the many lessons, is one that seems to permeate the entire experience and that is: Embrace patience. Take a deep breath, see the blessings in slowing down and be okay with things just the way they are.

I remind myself often that the reason I am here right now is to help take care of Mom. This is my calling, my duty, my privilege, my choice.  I don't have to step away from my life to help with Mom. I have the option to take up "normal living" whenever I choose. However, my choice is to be here for her. That means I get to slow down to her pace and live in her world and learn the lessons that are available for the gleaning.

It's certainly not easy to watch a parent slowly slip away little bit by little bit, but somehow there is some solace in knowing that she isn't traveling this road alone in an unfamiliar place with unfamiliar faces. We are blessed to have the ability to care for her at home. Not everyone is so fortunate. So, even though the journey may be a little difficult at times, still I am glad I have the opportunity to hold her hand and travel this road with her.

What feelings have you had to deal with while journeying with a loved one in the dementia dimension?
 
 

The Dementia Dance: Three Steps Forward, Two Steps Back

Each morning brings a different type of day. A good morning doesn't indicate a good day and a difficult morning does not mean a difficult day. An illness does mean some lost ground though. Sometimes it's a lot and sometimes it's a little, it just depends.

The uncertainty of it all can be exasperating and nerve wracking. I find myself wanting to find ways of communicating with Mom so that I can better understand what she is going through. She struggles so hard to get her words and for many, the patience required to wait for a complete sentence is too much to ask, especially when it comes to phone calls. I coach her though phone conversations and often must interpret for her. I don't mind it, but I know, for the person on the other end, it can be frustrating. Probably not as frustrating as it is for Mom though. She doesn't talk much because it is such a struggle to get the right words to come out.

Then there's the walking. Years ago Mom used to say she couldn't walk. At that time she would occasionally use a cane. I used to tell her that she most certainly could walk otherwise how did she make it from point A to point B? She would just smile and walk on.

Slowly though, her walking has deteriorated. Now she uses a walker and at times we must use the wheelchair. A three second jaunt from the bedroom to the kitchen now takes anywhere from ten to seventeen minutes. A while back I got the brilliant idea to time her since I had to walk with her to make sure she didn't fall. Back then, the trip took five minutes. And actually, timing her came in handy because then I could plan how much time I needed to allot for outings which invariably meant a trip to the washroom right before time to go.

Outings now are pretty much restricted to church and the annual physical. Church isn’t a weekly given anymore either. Getting in and out of the car is quite a production and heaven help us if nature calls in the middle of service.

I used to take Mom for a drive on afternoons. Saturdays were always nice because we would go for a drive and listen to “A Prairie Home Companion” on MPR and stop for a bite to eat. But that was a long time ago, or so it seems. Now, on warm, sunny days I turn her chair toward the window and we listen to it in the living room. Sometimes we munch on trail mix or slices of apple. Sometimes we are eating dinner when it comes on.

When I was a little girl, Mom taught me how to do the Cha Cha. She talked about dancing the Jitterbug and the Charleston when she was young and I remember my brother teaching Mom and Daddy how to do the Mashed Potatoes and the Jerk. Maybe it wasn’t a huge part of our growing up, but dancing was definitely a part of it. Now we do a different dance, but a dance nevertheless. Sometimes it’s three steps forward, two steps back. Sometimes, visa versa. Always to a minor key and always a slow dance. But the good news is, we are still in the dance.

The Journey Begins

This journey began over ten years ago and probably even before then. It all started with a trip to the emergency room. Mom had been staying with me while my father was undergoing treatment for cancer; he was staying with my brother. This was in the middle of 2000. Everything seemed to be going okay considering the circumstances.

One evening, Mom complained of dizziness. One look at her eyes going back and forth told me something was very wrong so my son and I loaded her into my van and took her to the emergency room.(Doctors, nurse practitioners and nurses, please take note: bedside manner means everything in an emergency especially where elderly parents and children are concerned.) Mom was whisked off for testing and scans and brought back into the room after what seemed like a very long time.

"She has dementia and water on the brain." The person who told us this was abrupt, unwelcoming and had no compassion whatever. Perhaps she was having a bad day. Maybe somebody squashed her puppy that evening, I don't know. All I know is she zoomed in, dropped the info and left. She made no attempt to explain anything other than to say that nothing could be done but there was medication for the dizziness. A nurse came in with a prescription and we bundled Mom back into the car and went home.

Dementia. All I could think at the sound of that diagnosis is that my mother is not crazy. Dementia; demented; loopy; not all present...etc., etc., etc. I really had no idea what dementia was, only my childhood memories of people talking about demented so and so and how weird he or she was behaving. I thought I had been told that my mother had lost her mind. I knew that wasn't the case. I needed to find out for myself what was going on.

The first thing I did was look up the word "dementia" in the dictionary and find out exactly what it meant. The definition was unsettling, but not nearly as bad as what I had imagined. Mom had not in fact lost her mind. However, her memory was going and some of her abilities would be leaving as well. To a certain extent the diagnosis meant she was in the process - the slow, long process of losing bits of her mind. But I chose not to dwell on that. I focused on the memory loss piece and decided that we could deal with that. And so we did. And thus began our journey down the winding, ever changing road in the dementia dimension.

The intent of this blog is to help someone out there who is facing the same challenges my family and I face. It is also a vehicle for me to share some of the insights I've gained during this journey. It continues to be an interesting pilgrimage with unique stops along the way and I pray that someone who just entered the dementia dimension or maybe even someone who's been here a while will receive a little gift of knowing that they are not in it alone and that the things you feel are natural and normal. I'm not an expert, but I am my mother's child and I am doing all that I can to make sure this time of her life is as comfortable and pleasant as possible. Welcome to the Dementia Dimension!