The mind is such a mystery. Witnessing dementia makes you believe a pattern arises or you can predict the person’s behavior based on past experiences. Then one day they make a liar out of you. They act differently than predicted. No rhyme, no reason… they just do.

I had such a day yesterday when I took my Mother to the doctor for a follow-up appointment on the foot fracture she got from her recent fall. The previous 48 hours were spent battling to keep my Mom in the removable boot the emergency room physician put on to stabilize her foot. She was adamant her foot was not broken and could not comprehend why she was wearing this “ugly shoe”.

I tried every manner of persuasion to keep her in the boot. I even took a picture of her x-ray, printed it and drew an arrow to point out the fracture and wrote “Marion’s Broken Foot” on the sheet. This helped to distract her into a discussion about how the injury happened, when it happened, etc. but in the end she would forget and try to remove the boot.

In frustration I resorted to duct taping around the straps on the boot to keep her from being able to unfasten them. This worked until the evening hours when her frustration level was so great she finally threatened to walk next door and have the neighbor take it off if I wouldn’t. I relented about an hour before her bedtime…almost made it!

Yesterday was a different story. Mom was cooperative at the doctor’s office and continued to be so when we got home. This doctor had given her a slightly smaller boot and she seemed more agreeable to leaving this one on.  Even more striking was her memory. Mom remembered who I was into the evening hours. She was more pleasant and talkative than she had been in three months , actually initiating appropriate conversation with me.  Mom asked how my day was and what I had been doing all day.

Forget the fact that she remembered nothing about the doctor’s office, her broken foot, etc. What warmed my heart was that she remembered me! That she was interested in how my day was spent and that my sweet and thoughtful Mother came shining through, even if only for an evening. It was more than I than I have had from her in such a long time.

The ebb and flow of her memory can be so frustrating. But I am grateful for evenings like yesterdays. They buoy you up, bring a small sense of normalcy to the situation, no matter how brief. And it recharged the battery that was getting low ….to have the energy to face the morning I am having today. To be able to find the patience to repeat the story (over and over) that answers the question “Why the heck am I wearing this ugly shoe?!”

Four months after my Dad died we had to put down my parents 12-year-old dog,  Zorra. It was a very difficult time for my Mom as the loss of my Dad was still so fresh and now Zorra was gone as well.

For many months after Zorra’s passing Mom inquired about getting a new dog. She asked during every phone call when we were going to get her a dog. This became a topic of much debate among my siblings, as some believed she still had the ability to care for a dog and others, not so much. In the end the winning argument was a rescued pound dog could do worse in a life than living with Mother and so my sister took her down to the shelter where they adopted a dog named Timmy.

Timmy was a one year old Chihuahua mix found running the streets of Carson City. The workers at the animal control facility, knowing Moms condition, thought he would be a perfect match. My sister agreed and Timmy came home to be Moms new companion.

Mom warmed up to Timmy quickly and soon they were taking four to five walks a day.  Timmy instantly bonded with Mother, and as each others sole companions he never leaves her side. So yesterday it should not have been a surprise that he became my Hero.

Mom had just finished a shower and was out in the backyard brushing and drying her hair in the sun. I was busy in the kitchen when I heard Moms voice calling out. I assumed she was throwing the ball for my dogs, to whom she gives a loud congratulations every time they bring back the ball.

Suddenly Timmy came running and barking into the kitchen. He looked at me and barked, ran out only to come back in barking again and repeated the pattern. Timmy never leaves Moms side so I quickly followed him as he ran into the backyard.  He rushed up to Mom barking and whining and I saw that she was sitting on the cement next to the wood deck. It was clear she had  fallen.

Unfortunately her foot was injured,  so we were off to the emergency room where an x-ray confirmed fractures in two metatarsals of her left foot. It will be a series of doctors appointments from here to decide the best course of action for healing.

I think back to all the debate on whether a dog would be too big a responsibility for her, or if he would receive the proper care. All water under the bridge as I couldn’t be more grateful for his love and devotion to Mother. Lassie herself could not have done a better job!

A friend was over visiting the other night and we were both sitting and talking with Mom. My friend is a nurse and knows all the local doctors so I was updating her on my Moms recent Neurologist visit.

I was remarking at how I wish doctors would at some point give you a private moment to ask them questions without the patient present. When I discuss Moms dementia in front of her it makes us both uncomfortable and I think it raises her anxiety level. But I understand that she is the patient and so he wants to keep her in the room for all the discussion regarding her health.

I was recalling how at the end of our appointment the doctor asked if I had any more questions. I inquired if he had any thoughts about Mom’s recent ability to remember that my Dad died. I told him I have changed my response when Mother asks me when Dad is coming home. I now ask her to think about it and then I am quiet. She will think for a minute and then say “Well I guess he isn’t coming home because he died, but I put that somewhere else because is don’t want it to be true.”

After telling the doctor this story he turned to Mom and asked “Marion do you have a religion?” She replied that indeed she did. Then the Doctor said “Well then you know your husband is already home and he will be there when you are ready to join him.”

After hearing about this exchange between the doctor and Mom, my nurse friend turned to my Mother and asked “How do you feel about that?” Mom quickly replied “Well that is fine but I am in no hurry to get there!”

Working at keeping a “normal” life when you live with a person who has dementia takes more than patience, it takes creativity. The most difficult part is when things they always did correctly become more difficult for them to maneuver.  A perfect example of this change in Mom is her going to the mailbox to collect the mail. Mom cannot differentiate between incoming and outgoing mail.  I learned that when I put mail out to be collected by the mail-person, it was often retrieved by Mom and put on the table as incoming. So I am careful to put the mail out and monitor its retrieval by our mail carrier.

Harmless right? Well last week I received my forwarded bundle of mail from my San Diego address (no I have not yet put in a change of address) and in the packet was a cancellation letter from my Cobra insurance. My health insurance, dental and vision all cancelled back to February.

An explanation is in order here because I waited until the last week possible to pay my four months of Cobra coverage, hoping I would not need to use it before I got a new job with new insurance. However with an emergency room visit for a kidney infection, two subsequent doctor visits, an emergency visit to the dentist and then a tooth extraction and an impending tooth implant….well that insurance was critical to me.

So last week I put the insurance payment along with two or three other household bills, in the mailbox for the mail-person. I waited until I saw her parking on the street before I put the mail out. It was however our pool repair week and I was being pulled to the backyard constantly for questions and discussions on the project .

So when I received the cancellation notice I panicked and tore apart Moms house looking for the bills I had placed in the mailbox. I found two of the letters in my Moms underwear drawer. Although I never found my insurance payment letter I knew it had disappeared into the black hole of dementia never to be recovered …. or found a year from now in some obscure place.  I cried and cried knowing I had now incurred thousands of dollars of medical and dental bills.

I called the Cobra number to plead my case but they were closed. So I did the only thing I could think to do…..I prepared and drank the biggest Martini I could make (I know that was not a  healthy reaction, but it helped). Mom sat with me not able to understand why I was so upset because of course I never told her, as that is not only pointless but not helpful.  She kept telling me in her confusion over the situation “Now I don’t want you to bother helping me with anything tonight, I am fine.” That of course made me feel worse because I didn’t want her to know it had anything to do with her actions. Finally I was able to collect myself and Mom and I sat outside and had a nice evening together.

This story you should know does have a happy ending. First thing the next morning I called my Cobra insurance and they said everyone gets ONE mistake and this would count as mine.  I was able to make the payment over the phone and now my insurance is intact. And I have since made a few trips to the beautiful big post office here in Carson City. Lesson learned.

I had to take my Mother to her Neurology appointment yesterday. She was as expected, very argumentative about having to visit a doctor because, as she stated “I am not sick!” After much coercing on my part she agreed to go if I promised we would not stay long.

This was a new doctor to us, so when we arrived at the entrance I was surprised to see two signs I rarely see on a doctor’s office door. One read NO DOGS ALLOWED and underneath the second sign read NO FOOD OR DRINKS. Mom stopped and read both signs and then turned to me and said “What no drinking…..Why did you bring me to this place? How boring lets go!”

My new normal played out last night when Mom asked me if I new when Monica was going to be home. I said “Mom, I am Monica” She looked at me for a long moment and said “My Monica is so much younger. I thought you were twelve.” I laughed and told her “No Mom I grew up. I am 56 years old now.” She replied “Wow you are almost as old as I am now. You must pee your pants every once and awhile too!” I laughed so hard she was almost right!

Today I receive an “F” in my care-giving skills.

I made Mom a tuna-fish sandwich for lunch. After I served Mom, I returned to the kitchen and poured the juice I had drained off the tuna can over some wet cat food. My mistake was that I walked away and left it on the counter while I put in a load of laundry.

When I got back to the kitchen Mom had wrapped 1/2 of her sandwich in a napkin and placed it on the counter next to the refrigerator. She pointed to the bowl with the cat food and tuna juice I had unfortunately left on the counter and announced “I am saving the rest of this for later.” I responded with “Mom that is cat food, your sandwich is over there” as I pointed to the wrapped portion by the refrigerator.  Not to be dissuaded, Mom said “I eat cat food!”

Now, this is where I am supposed to practice my new technique of agree or distract…..this is also where I received my failing grade.  I fell right in line with the old reasoning routine and said “Mom you absolutely do not eat cat food!” She got angry with me and said “How the hell do you know what I eat! You don’t follow me around!” I looked at her for a minute and then remarked “Well you got me there Mom and to be honest at this point I don’t want to know.” She walked out….and I hurriedly fed the cat food to the dogs! Double “F”!

Mom and I went to lunch and the dish she ordered was full of fresh vegetables. She remarked at how good they were and commented on how much she loves vegetables.

Mom has always enjoyed gardening and so I took this opportunity as an opening to spark an interest in a past hobby. I said “Hey Mom, I was thinking I should build a raised garden bed in the backyard next week.”

She looked a bit puzzled and said “Why, so you can sleep in it?” I said “No Mom, so we can plant and grow fresh vegetables.” Mom asked “What color?” I replied that it would be a variety of vegetables that we could plant and work in the garden to grow fresh food. Mom said “Ok if by WE you mean YOU then I am all for it!”

I have been practicing a new approach with my Mother and her dementia. A dear friend, who is a University Professor, tells me that trying to orient her to what is “real” is no longer considered helpful. In the past we were told it was a way to help them stay clear or in the present. But new research shows that it only causes frustration (for both parties) because their brain is damaged and unable to process the logic. So going along with them is best and if that is not possible or can create a safety issue, distracting them off the topic is a second option.

This sounds easy but I can tell you it is the most challenging part of caring for my Mom. It not only takes an occasional bit of creativity but you have to suspend all your beliefs about what is logical. You cannot invest in who you believe this person should be. You cannot make it different with memories or reminders…it does not work 99% of the time. Instead you have to join them in what their life looks like in the moment.

An opportunity to practice with Mom  presented itself yesterday when she came marching into my room to tell me something was wrong with the pool construction. As I have mentioned in a previous post, she believes that the pool resurfacing workers dug the pool deeper than she remembered it to be and wants them to fill it in.

So yesterday she started in again, telling me it was dangerous to have such a deep pool with all the children we have around. “They are all going to sink to the bottom every time they go in!” she lectured, her tone angry. Knowing we have no children around, knowing the pool has been this deep for 40 years, I calmly replied “Ok Mom, I will have a talk with them on Monday and get them to change it. How about you let me take you to lunch now?” Mom looked at me with relief and said “Thank you Dear. Then she turned to leave saying “Well now I have to go find some lipstick if we are going to lunch” and marched down the hall to find her purse.

The most heartbreaking part of dementia is being slowly erased from your loved ones mind. No matter how many times my Mom forgets who I am it still makes my heart sink. Common to this disorder, evenings are typically when they can no longer keep their thoughts together. It is called “Sundowners” and most nights Mom struggles with her memory.

Last night was no different but I got a typical Marion twist. I was sitting next to Mom on the couch when she looked at me and said “You can go home now” clearly thinking I was one of the hired caregivers. I replied “Mom do you know who I am?” She looked a me and said “Oh, I think you might be a relative.” I told her that was correct and to help her to better recognize me I took off my glasses and let my hair down that was tied up on my head. I looked back at Mom and asked “Now do you recognize me?” She smiled and said “No but you sure do look pretty!”