Getting Mom to the doctor’s office is a battle from the first moment you alert her to an impending appointment until you walk through the door of the office. No matter the reason for the appointment she will insist it is unnecessary.

Imagine sitting next to a person with a broken foot, neatly tucked into a walking boot and have her respond “My foot isn’t broken! It feels perfectly fine. It doesn’t even hurt!” Pointing out the obvious medical boot on the end of her leg, unwrapping it and showing the swollen foot….none of this will convince my Mother.

These are the times her dementia makes me angriest, not at her but at the condition. I resent how it takes control of her reasoning. But despite her protestations, we always manage to make to her appointments. Nonetheless her suspicion and insistence never diminishes right up until the moment the doctor steps into the room.

On our most recent doctors visit, while waited our turn in the examining room, Mom was peeping along under her breath about the unwarranted appointment when I finally turned to her and said “Mother you have a broken foot so why are you so insistent that we don’t need to be here? ” She replied “Because doctors try to talk you into all sorts of stuff you don’t need!”

I laughed at the nonsensical comment but was drawn in by now and said “I can’t imagine where you got such a suspicious attitude of physicians?  You were married to one for 57 years!” She looked at me sideways and said “That is exactly where it started!”

A few days before I was to return home to Carson City, my Mom called me early in the morning and was very upset. I asked her to tell me about it and she said “Well I got up this morning and I just can’t figure out anything. It’s like I am stupid. I am not sure what is happening.” I realized in that moment that she woke up quite lucid. She was having a morning of clarity and she was afraid, not understanding why she had no point of reference from which to start her day….no memory of yesterday, no memory of a path on how she arrived at today.

I explained to Mom that she was not stupid, that she has a memory problem and that was why there was a woman at home with her. The caregiver was to help her manage things and then I was coming up to stay in a couple of days. Mom said “Oh good, well that puts a smile on my face. I am not sure what is going on with me but it seems clear I am going to need some help for a while until I get better.”

Once she had an explanation and a plan of action, her anxiety started to abate and Mom relaxed a bit in our conversation. She was getting her bearings and felt everything was going to be OK. I told Mom that I loved her and that I would see her soon. She asked how long I would be staying with her and I said at least a few weeks. Her response to that news almost broke my heart. In her time of clear reasoning Mom replied “Oh that is so sweet of you dear but I am sure you wont need to stay that long. I should hope I will be much better my then.” Mom said she loved me, would see me soon, hung up the phone …. and caught up in her tangle of hope and wishful thinking, I proceeded to cry.

I took a much-needed respite from taking care of my Mother, made easier by the fact the my sister was able to stand in for much of the time. A home health service filled in the gaps.

Anyone can tell you that leaving behind the responsibility of care-giving is a difficult task. The needed break is occasionally interrupted by reach-outs to you for clarifications on day-to-day details or you back for reminders and check ins. It would seem not so different from a parent leaving behind a child to go on vacation, or a spouse while on a work trip. But it is very different.

My Mother doesn’t remember that I was there with her day-to-day, but when I leave the change in routine creates a shift. Somewhere in her mind is a consciousness of disruption and so she can become difficult to manage and uncooperative.

I am the go to person on the call list to talk Mom in or out of a situation when she is being difficult. Mom does pretty well with family as she sees them as just visiting and so that makes their being in her home reasonable. But once the paid caregivers step in, the phone begins to ring with questions like “Who is this person in my house” or “I want you to tell her to leave right now”.  Thus begins the reminders of why she needs help and the negotiations for cooperation. It brings a whole new meaning to the word “respite”.

The break however is still welcome and despite the occasional interruptions is so important for caregivers of people with dementia to create for themselves. I find it gives me a new focus on what I need to do differently for me when I return.   It serves as a reminder that I need to be a better steward of my own well-being so that both Mom and I can have a more quality life. Isn’t that supposed to be the point of this after all?

I am so thankful for my family. I am one of the lucky people who has a loving, close connection with my brother, sister, aunts, uncles, cousins, nephew, nieces and in-laws. My life is rich with love and support as a result.

My Mother was a big part of creating and keeping that connection at our house. She had friends and a social life to be sure, but she made certain we traveled to visit family often and welcomed them to our home as well.  As a result I have only to pick up a phone, send a text or email to any number of relatives and love is on the other end.

Mom was and continues to be a favorite in our family. Her smile, good nature and wonderful sense of humor were a constant at our gatherings.   Her company was a joy to us and as such those connections she created survive to this day. Relatives still come to visit, call frequently or drop a note in the mail just to touch base and let her know they think of her fondly.

Many have the experience of needing to remind Mom of who they are during their conversations and although her personality still shines through, it can still be difficult for those who love Mom to witness her decline.

More difficult still is the investment of love and time that once formed connections with Mom are now just a moment in time. They are literally forgotten to her as soon as they are created. She enjoys the interaction but making memories with her is a thing of the past.

I witness this every day and yet at times it still seems impossible to me. That this smart, funny and caring woman who would inquire, listen and remember with interest, can no longer retain. The connections have stopped being stored and even the memories we shared, for her are starting to fade.

Knowing all of this I am still stunned by the finality of it all and never more so than yesterday.  My sister and I were having a changing of the guard, as she was driving down from Oregon to stay with Mom to give me a much-needed break, while I drove back to San Diego.

I called Mom to remind her that Cinda was on the way to her and that I had just safely arrived in San Diego after a long days drive. Mom said “Oh good you are in San Diego. Where did you drive from?” Unable to stop myself, I reminded her that I had been at her house and there for quite a long time. Mom got quiet for a minute then said “Oh brother I am in left field. Well I am glad you arrived safely and call me later dear. Maybe I will be more checked in tomorrow.”

If only I could hope that to be true……

Two things at the house keep Mom oriented to time and date. One is a clock I ordered online that looks like a digital picture frame. It shows the day, time and date and is placed on a shelf across from Mom’s favorite chair. The other is the daily local newspaper. Mom will often look at the top of the morning paper to learn today’s date. Sometimes I will catch her picking up the paper just to orient herself to the day of the week.

Today is the 150th anniversary edition of our local newspaper, The Nevada Appeal. Like most morning Mom walked out to the driveway to bring in the paper and began reading it as I was busying myself in the kitchen getting her coffee and a muffin.

Suddenly I heard gasps and cries of alarm coming from the room where she was reading. I rushed in to see what was wrong and she pointed to the paper and said “This is awful did you see this?” She was pointing to a page in the paper headlined “Terror Attack” and it proceeded to outline the events of September 11. 2001. It was of course a reprint of the newspaper’s coverage of that terrible day.

As it turns out the entire paper was a tableau of front page spreads celebrating their 150 years of publishing. I immediately assured Mom that this was old news and this was their anniversary issue outlining all their reporting over the years. She remarked “Well this is the first I heard of it! How awful!” I agreed it was and we went over the events of that day.  She was newly horrified and upset by the article and was most bothered by the attack on the Pentagon as her Dad had been stationed there when she was a teenager.

Feeling it was to both our benefit not to relive every ghastly event of the past 150 years, when Mom got up to go into the kitchen I hurriedly gathered up the offending pages and stuffed them in the trash before she returned.

I believe it critical for people of sound mind to remember those who have sacrificed with reverence and respect. But this may be the rare occasion where I think for my Mother, forgetting is a blessing.

Most mornings I try to get up very early as it gives me a few hours to myself before Mother begins her day. That time is precious to me so I do everything I can not to wake her as I start my routine to let the dogs out, make a cup of coffee and then try to sneak back into my room for my personal time.

Like many people with dementia, Mom is most mentally alert in the mornings. She wakes up more in touch with her physical being than any other time of the day. So her broken foot has been a mystery to her recently because she wakes up more aware of it and is then curious about what happened and why it hurts.

Unfortunately this fact-finding mission will usually start about the time I am trying to sneak around preserving my “Monica time”.  It typically presents itself with a quiet knock at my bedroom door, which she will then open, peak her head in and say “Is anybody here?” I answer “Yes Mom it’s Monica” and so begins the inquiries “What happened to my foot?” and “What do you mean it is broken?” etc, etc. I then escort Mom back to her room, answering her questions and suggesting it is too early to get up and encouraging her to go back to sleep for a few more hours.

This pattern started quite early this morning and as I was walking Mom back to her room she asked “So my foot is broken then?” and I answered that indeed it was. Mom said jokingly “Oh darn I am not wonderful anymore.” I said “Well you are still wonderful to me.” She laughed and said “I guess YOU need to go back to bed and get some sleep too because that really is a dream!”

Since the first day we brought Mom her dog Timmy from the pound, I have never heard Mother call him by his name. Granted it isn’t the worlds greatest moniker, but he responded to that name at the shelter and so we kept it for ease of his transition.

Timmy never ceases to amaze me in how he interacts with my Mother. She never gives him any real direction and when she does it is often confusing. Because of his size she will often refer to him as her cat (she does have three) and sometimes call him saying “Here Kitty, Kitty, Kitty.”  He doesn’t respond to being addressed as a cat. Timmy wags his tail and comes to almost any term of endearment she throws at him, but he will not respond when she calls him Kitty.

Timmy is with her constantly, either at her heels or on her lap. Although she doesn’t properly communicate with him, Timmy has Mom well-trained. He lets her know when he needs to go out, when he is hungry and when he wants to go for a walk. Because of her memory issues Timmy gets food and walks when ever he asks for them, which is about four or five times a day!

Timmy’s devotion is so beautiful to watch and I am so grateful, being a dog, he doesn’t know of all the times Mom will ask “Who’s cat is that?” or “Is that your dog?” or “Is that dog a boy or a girl?”.  He is blissfully ignorant and full of love.

Regardless of the situation he always seems to persevere. A few nights back I heard Mom calling out from her bedroom. I went in, turned on the light and Mom was lying on her side, a bit distressed. I asked Mom what was wrong and she said “Some type of critter seems to have crawled into my bed and I can’t get it out. Can you help me?” I scanned the room looking for her devoted companion, he was conspicuously absent so of course I knew what I would find. I lifted the sheets and there was Timmy, curled up sleeping behind her knees.

I pulled him out and showed him to Mom and she said “Oh is that your little dog?” I reminded her that he belonged to her and his name was Timmy. She replied “I didn’t remember that I had a little dog but he can stay on top of the covers if he wants”. I set Timmy on his little blanket on top of the bed, turned off the light and left. As I walked down the hall I could hear her calling to him softly “Here Kitty, Kitty, Kitty.”

Yesterday, on the eve of Mothers Day, I thought I would find myself happy to be  with my Mom in Nevada, glad for the opportunity to spend time with my Mother and grateful she would not be alone on such a special day. I would be doing myself an injustice if I pretended that to be totally accurate.

I think a few points of reflection are in order to fully understand why the contradiction. True I was grateful she would not be alone on Mothers Day. But the day was so difficult, because of the Jeckle and Hyde experience I had with Mom, that I wished I could have been anywhere but with her.

As usual Mom woke up with the sweetest and most cooperative disposition. She thanked me for everything I did from assisting her to shower, to dressing, to preparing her breakfast. It is important to note I don’t need or expect her gratitude for everything I do. She is my Mother and I do it out of Love. But it is so nice to share time with my kind , funny and thoughtful Mother that I cherish every moment of her pleasant disposition time we share.

Because she is anticipated to be in a walking boot and dealing with a sprained knee for six weeks, I planned my day around outfitting Mom and the house to better accommodate her limitations. I went to the pharmacy to pick up her walker and I successfully instructed her on how to use it. I purchased and installed grab bars in two bathrooms and one by a low step leading from the family room. I bought materials and built a ramp over the steps on the side of the deck leading to the pool.  I felt like I was really making positive progress. But with each project she got more angry and confused so that by dinner time I struggled not to burst out in tears at the table.

It is not important to share the ugly comments, the hurtful things Mom said to push me to the edge. It was the dementia talking not my Mother. This is really the cruelest part of dementia. She would forget one moment she had been unkind the last.  Change is hard for them and the numerous projects added to her confusion compounded by her new physical limitations.

What is important is to send a request. If you know a person who has a loved one they care for who has dementia, who marches though life holding on to joy in the lucid moments and dealing daily with the impossible task of separating the person from the disease; reach out and touch base. Do what I call a “Dementia Drive By”. It can be in the form of a phone call, a text or a personal visit…whatever vehicle you choose. It does not need to offer anything more than a distraction. You can never know if your efforts might just change someones day.

I had a Dementia Drive By last night from a dear friend who called to say she was coming over with wine. So one of my worst evenings in dealing with dementia was transformed. Mom went to bed early and my savior and I sat up talking until all hours of the night. This act of kindness was eclipsed by the unexpected emergence of Mom from her room. She commented that she couldn’t sleep (I am sure because of our loud talking) so we invited her to join us. We three sat and talked and laughed late into the night. When I helped Mom back into her room she was so pleasant and remarked at how enjoyable my friends visit was to share.

Then today, on Mothers Day,  I was once again blessed with a Dementia Drive By in the form of a text from a favorite cousin, who I call my Guardian Angel, offering love and support. All the sadness and tears melted away by two acts of love. I am truly blessed.

The only hiccup so far today was my unfortunate timing in my choice of a Mothers Day gift. A few weeks back, before the fall,  I picked it up. A nice new pair of walking shoes….and so it goes!

Falling when you are a senior citizen can be devastating.  If you mix dementia into the equation, it can really add to the complications of a fall. Often people with dementia are not able to feel pain or if they do have pain, may be unable to articulate its origin.

This turned out to be the case for my Mom over this past week. She had a fall last Sunday and a trip to the emergency room confirmed a break in the 4th and 5th metatarsals of her left foot. She felt little pain even though they were significant breaks and insisted she had no other aches as a result of the fall.

That evening, as she was hobbling down the hall with her left foot in the stabilizing boot, I noticed a bulge on her left hip. I had her sit on the bed and pushed on the considerable swelling and asked if it hurt. She said yes “When you poke at it like that!” I called her Nurse Practitioner the next day and her office had a mobile x-ray tech come to the house to x-ray Moms hip. Thank God, no break.

As the week progressed, Mom commented that her right knee was bothering her. But when I looked there was nothing of note and when I poked about on her knee she said nothing hurt. I assumed it was just a fatigued joint from all the compensating it had to do for the left leg that had a broken foot.

Then today, five days after the fall, she called me over to the couch to show me her knee. She pulled up her sweat pants and the right knee was very swollen.  When Mom tried to put weight on that leg she had significant pain. So with a broken left foot and an  unbearably painful right knee, we were once again off to the emergency room for an x-ray.

The ER Doctor came into the room and saw the note I had taped onto Moms boot that read “This Foot Broken”. He asked me if that was for him.  I laughed and said no that Mother had dementia and refused to believe her foot was broken because it did not hurt. She was always asking me to take off her “ugly shoe” and so I put the note on it to remind her why she should not remove the boot.

After the x-rays showed no break but considerable joint swelling, the Doctor felt sure it was in large part due to the fall and exacerbated by her favoring that leg because of the broken left foot. So, Mom and I sat waiting for the Doctor to return as he was going to inject her knee to relieve the pain and help reduce the swelling.

Mom was again focused on her foot with the boot but now she was making repeated attempts to read aloud the attached note. She kept pronouncing the words wrong or reading them incorrectly and was saying things like “T Fute ” or “This food “.  I managed to get her to read “This Foot” correctly but she could not read “Broken”.  She said all manner of words, most of them not actually part of the English language and all of them wrong.

Finally when she was really starting to get frustrated I said “Mom relax, try one more time, you almost have that last word. What does it say?” She looked at me and answered “It says maybe someone should get Marion her glasses so she can read it!” Oops….

Mom has been doing a very good job of remembering my Dad passed away. Sounds strange that I would want that for her, but it is difficult on me to remind her when she asks where he is, so selfishly I prefer when she can recall he died without my assistance.

She doesn’t immediately remember he died. Typically she will ask where Dad is  and my new successful response has been “Think about that for a minute Mom.” She does and will almost always say “He is dead. I know that but I don’t want it to be true.”

So we had a bit of a laugh at Dads expense tonight when she asked me where he was. I gave my new canned response “Think about that for a minute Mom” and she reluctantly replied “In Jail?” I laughed and said “No Mom!” She guessed again with “Is he with another Girlfriend?” Okay, now I am getting a bit uncomfortable and answered “No Mom he died.” She replied “Oh good I like that better.”