People with Dementia Love Sweets.

Posted on February 23, 2014 by Lynn Brophy

Caught Red-Handed…Evidence in Hand!

Funny how much a dementia patient will love sweets. It’s the highlight of their day and they will sneak around the house trying to get them at any opportunity. Yesterday was Saturday and I was home for the day having finished all my errands and supermarket runs. Took a break after lunch to sit and work on a gift that I have been making for a friend when who do I see shuffling by through the living room? Yep, you guessed it, my mother! I didn’t even ask what she doing or where she was going because I knew exactly what she was up to. She was headed in a straight bee-line for the kitchen as she does everyday as if she was on a mission…one foot in front of the other taking baby steps, not turning her head to say hello, not stopping for anything.

Tonya the dog is slowly walking behind her knowing what she was up to. Of course Tonya knew there was something in it for her so she stayed close-by. I just sat there and said nothing, just watching. I hear plastic noises in the kitchen so I figured I’d go in to monitor the situation. There she was, cookie in hand, waving it proudly for my photo. What the heck, she had her lunch so why not a cookie? She loves cookies and sweets of all kinds as her mother and father did and their parents before them. Not sure if it is just a trait of her family or if it’s magnified by the dementa. Her father had dementia and he was a sweets monger also. My grandmother was a grand baker of cakes, cup cakes and cookies so there was always something sweet in the house. She made the best chocolate ship cookies that I have ever had.

This morning after doing her morning routine, she follows me into the kitchen to watch while I make her breakfast, then usually she follows me back to sit down at her table to eat. This morning, while I was making her breakfast she seems distracted, moving over to the left to stand directly in front of the cookies, giving them a stare as a bird dog would stand in position when pointing out a bird in the field. I looked over at her and all she could muster up was “oh boy, look at that”. Since every day is a new day for her, every day is also a newly discovered box of cookies! All I said was ooookay…if you still want one after you eat your breakfast, you can have one for your morning snack…of course a few hours later she was ready for her morning snack and had her cookie! Funny how they forget almost everything else, but they always remember to get their sweets.

So why not a cookie? At her age and with what she is going through, every day should be good for her. After all, today may be her last day so who am I to say that she can’t have a cookie? At this point, I am thinking quality rather than quantity. As long as she still knows what a cookie is, she is welcomed to have one if it makes her happy. The Cookie Monster Strikes Again!

So, why not a cookie?

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I’ve Been Wondering Where My Mother Is…

Posted on February 13, 2014 by Lynn Brophy

Today is my grandmother’s birthday…February 13th…the day before Valentine’s Day. She would have been well over 100 years old by this time. A day that I can never forget..I will never forget, February 13th. She was my rock as a child. This was her wedding photo. I can’t help but notice that she had eyes like blue ice. I thought she was pretty as a young person. It’s actually hard to believe that your grandmother could ever have been young, but they, just as we, were once young and vibrant, now a thing of the past.

Well, it’s common for a dementia patient to be looking for their parents and that has held true for my mother throughout her disease as well. We went through this long period of time where the main focus of her day, mostly at sundown would be spent looking for her mother, and Cardine would have to stand in front of the door to prevent her from leaving to look for her. What is that? Is she just going back to a good time in life, and therefore remembering her mother? Or perhaps, she is thinking that she is 10 years old, or in a crisis where she needs the good advise of her mother. We will never know.

There is one thing that I do know. I was home, yet again today from yet another horrendous winter storm, a classic noreaster, that the northeast has been facing this year, when my mother walks out to me looking for her mother. This hasn’t happened for a very long time and I guess, it got me to wondering. While cooking dinner tonight, low and behold a thought goes through my head…OMG…it’s my grandmother’s birthday today. Of course she came to me looking for her mother…even though she is void of her memory, a black hole, but somehow, some way she knows. It’s her mother’s birthday today but doesn’t know how to verbalize it and probably can’t even make sense of it. The thought of her mother is just there at the top of her mind. This was astronomical for me as a believer of this train of thought. I truly believe that her mother was here, in this house today, although I am not in tune enough to know that…somehow, some way, I believe that…all unexplainable.

Her mother, my grandmother was a crucial role model for me and she was something to behold. She was very old fashioned and very dedicated to her family. She took me on even when it was too much for her, as I was quite a handful as a child. My mother relied heavily on her to fill in when I was sick, on weekends, summers, holidays or just whenever and I loved every minute of it. I thank god for her as she is the reason that I am as normal as I am. I have always aspired to be just like her. Again, be careful for what you wish for in life. She died from the stress of taking care of her husband with dementia. I miss her as much as my mother does. Happy birthday Grandma!

The Elderly and Bad Winters, Not a Good Combo

Posted on February 5, 2014 by Lynn Brophy

Well, here I am, at home again with another bad weather system, today an ice storm. Cardine was not able to make it and I don’t blame her a bit since I myself was afraid to drive in it. So, Mom’s routine has been broken for the second time this week caused by winter storms. She has a doctor appointment on Friday and I have planned a day off, but I had to reschedule for fear to take her out of the house, not to mention living on a hill. Icy hills and elderly dementia patients aren’t a good combo either.

Needless to say, aside from being a little confused and cranky, she’s holding up pretty well considering that I haven’t spent much time with her. I am working remotely from home, so she must amuse herself today. I do however get a lunch hour which explains this post! I gave her a box of her papers, so she has been doing her secretarial sorting all morning. Gotta love those boxes of papers, they are so important to her. She can actually spend the whole day going through them and she is perfectly content doing that. For her, every day is a new day and a new box of papers.

Well, the above drawings were done by my mother about a year or so ago. I would find little things like that and put them aside. It’s interesting because it looks like a family of ducks. Since she is always looking to leave the house and look for her mother, I am interpreting that she pictures her mother, father and sister in these drawings, although her sister was not a twin. She was her older sister and they were very close We lost her to Leukemia years ago. The second drawing is on a paper towel, clearly showing that she is calling to her mother for help. The third drawing is her all alone, crying for help. What that means to me is that she feels lost and she can’t find the only family she remembers. Unfortunately, she is now past the point of making drawings. I am grateful that I have these to give me insight to what she is thinking. How sad…what a terrible disease.

Meanwhile, while she is occupying her time with sorting her papers, the rest of us are stressing about not going to work today and having to deal with more ice in tomorrow’s early commute. There is something to be said for being in your own world, oblivious to the worries of the world.

Mom and Cardine, Her Wonderful Home Aide

Posted on January 26, 2014 by Lynn Brophy

Mom and Cardine

The relationship of Mom and her home aide Cardine is a wonderful one. We’ve had a few different aides come to fill in for Cardine when she takes a day off, but none of them hold a candle to her. Cardine is the best of the best, cream of the crop, reliable, compassionate, empathetic, patient, attentive, understanding and professional in all that she does. She knows my mother better than I do at this point and lord knows has made her life better…and mine also. I have learned so many things from Cardine, in that she has shown me how to better understand my mother, and to relate to her disease in a way that will help her situation rather than aggravate it.

For the untrained person, dealing with a family member with dementia can be very difficult and frustrating on a daily basis as the disease progresses. There is no way we can totally understand their behavior when they are in the throws of an attack and sometimes we get angry or frustrated which only makes the matter worse. Cardine is so far above the rest of us, in that she gets it…seems to understand exactly what the patient is going through and proceeds accordingly. She doesn’t aggravate an already intense situation, she talks softly, patiently and in the end my mother does exactly what Cardine wants, as in the case of a bath. It may take asking her once every 30 minutes for 4 hours, but she knows that Mom will never take that bath when she is digging her heels into the ground…but over time she will soften and finally give in. In the end, everyone is happy. Cardine is happy to clean her patient, Mom is happy because really, a bath makes everyone feel good and I feel good when arriving home after work knowing that the day went well.

I feel very blessed to have Cardine in our lives.

I’m how old? …Mom’s 86th Birthday

Posted on January 22, 2014 by Lynn Brophy

Mom’s 86th Birthday!

Here we are, January 22nd. It’s Mom’s 86th birthday, an absolute milestone for her bloodline. She’s already out lived both of her parents. Her Mom died at 78 years old and her Dad at 82 years old. By today’s standards, it doesn’t seem very long, but I guess in her family line, those ages are pretty old.

We went to bed last night to a fairly powerful snowstorm and woke up to a blanket of white outside. As she woke up this morning, I wished her a happy birthday. Of course, she didn’t know how old she is and she didn’t seem particularly interested in that little detail either. For the most part, to her it was just another day and another year older. Sad to think that you get to the point in life where your birthday, your special day, doesn’t mean much to you. Maybe it’s the dementia that makes her feel that her birthday is a non-event? Even though my birthday isn’t largely celebrated, I still feel some sort of excitement with that particular day. It’s probably human nature, at least that’s what I believe it to be. Everybody on the planet has their special day! One day that is more special than any other day of the year, the one day where “they” are brought to the top of things, feeling that this is the day I came into the world. A day to look back and reflect on the years and experiences of the past.

Because of the snow and the long ride home last night in the storm, I was unable to stop for flowers, so I told her to expect some pretty flowers tomorrow. She liked that idea and then proceeded to head out to the kitchen for her daily raid of the cookie jar. That makes it a good day to her…swiping a few cookies. Happy birthday Mom!

Oh What a Night…Sleeping Problems and Dementia

Posted on January 18, 2014 by Lynn Brophy

Wedding Day, 1949

Young and Feeling Pretty in Greenwood Lake

Dementia is a nasty and dehumanizing disease. Taking care of Mom can be challenging at times. I know at some point I will laugh about this, hopefully big belly laughs and good memories, but I am not there yet. It was a rough night last night. Matter of fact, lately, every night is rough because Mom has her days and nights mixed up. She naps a lot during the day and is asleep by the time I get home from work. Not just napping, but sound asleep, as if she is exhausted. I wake her up and she opts to skip dinner, although I must give her the nightly meds. She isn’t hungry for dinner but she sure would appreciate something sweet to wash down those nasty meds. I comply because she must have her meds with something in her stomach, so rather than argue with her and have regrets later, I just give her something sweet.

She will then go right back to sleep and at 3:00 am, I hear shuffling around the house. I get up and let her know that it is the middle of the night and that she must go back to bed. Of course, she couldn’t care less and just goes about her business. My mother is a child again…I’ve come to learn that children are for the young! There is a very good reason why young people have babies…they can do it. Grandparents send the little ones home…because they can’t handle it. When you are getting up at 5am to get ready for work, this is not a good thing. Makes for a cranky daughter and a crankier employee.

Not exactly sure how to handle this situation although I’ve been given advise that she is at the point of possibly taking sedatives at night to help her sleep until she is back to being awake during the days and sleeping during the nights. Now I understand why the doctor always asks “Is she sleeping during the night?”

A Day in the Life of a Dementia Patient

Posted on January 12, 2014 by Lynn Brophy

Another Day at the Beach with Mom’s Sister Lillian and Aunt Freda

I can’t help but think, it must be torturous for the afflicted dementia patient, when they have to say to you that they don’t know what they are doing. When asked if they feel that something is happening to their brain and they say yes, they do know something is happening but they don’t know what. When you’ve been a highly intelligent person who had a career her whole adult life, and then start losing your memories and mental abilities, the ability to write and read, or make sound decisions, all happening little by little. I would imagine that it’s like watching the train coming down the track in slow motion.

Last night, before going to bed, I checked in on Mom. I found her standing in front of her closet, looking inside but not knowing why she was there or what she was doing. It took me almost 20 minutes to talk her into getting back in bed. She did and we all got some sleep this night. The alarm goes off at 5am so that I can get ready for work, I walk down the hall and find her in front of her closet again, this time with no night gown on. I asked her what she was doing and she didn’t know. After investigating the situation, I found that she had wet the bed, but the point is, she couldn’t relate that message to me. The only thing that she could tell me was that she didn’t know.

I find that every day is a new day and every week that goes by, she sinks more deeply into the void. The same void that I saw in her father’s eyes so many years earlier. The eyes, the window into the soul…there was nothing there and my mother is slowly moving toward that point. Not medications nor science can change that, it’s just a waiting game, for all of us to watch. Luckily, at some point she won’t know that something is wrong…or will she? Will she be void from the outside and very aware on the inside? Does science know that answer? I don’t know.

Mom and Her Dementia. Be Careful What You Ask For!

Posted on January 10, 2014 by Lynn Brophy

Be careful what you ask for in life…the universe hears everything that you say and think and will do it’s best to make it happen good or bad. As a child, I was always conscious of the limitations at home as a result of Mom’s OCD disorder. It was absolutely intolerable because it oozed over onto me and my life during the years that, by right of passage, should have very fond memories. Because of that, I left home when I was 15 to move in with a friend and her father. That being said…

If there is one thing that I have learned along the way, it’s been that life teaches us lessons. All the problems and obstacles that we come across over the years are meant to teach us something. We are here for a reason, we are here to learn. That little voice in our heads, the gut feeling that we all have are there for a reason. If we don’t pay attention, the lesson could be bigger, harder and more painful than we are comfortable with.

Mom in Greenwood Lake at her Aunt Adlaide’s house. Strange seeing her near cows…so unlike her!

Mom’s had OCD since she was a child, with it snow-balling into a huge problem as she got older, until she was almost non-functional in her personal life by the time she was in her 30’s, with it only magnifying as the years went on. During the last year while living in San Diego, well into her eighties, Mom would call me every Sunday, just as her mother would always call her on Sunday to catch up with the week and keep in touch. In one of our conversations, she had told me that her apartment manager had raised the rent again and that she couldn’t afford it anymore, and was unable to find another place in her price range. She was very depressed and not thinking straight. I told her that she could, of course, come and stay with me for awhile and we would try to find her something here in her price range, of course at that time, not knowing that she was moving in the direction of dementia. She told me that she would like that and wished for one thing. She wanted to die, living normally without OCD. I agreed that would be a good thing for the both of us and that for me, it would allow us to mend our fences of the past and be at peace with each other when that time came

I can’t help but think now, that you really need to be careful of what you wish for…meaning, look at my mother. She wished to live without OCD before she dies…she was granted her wish, but not in the way anyone would imagine. She shows no signs of OCD right now because she doesn’t remember that she has it. She’s in brain failure and dementia has destroyed that part of her brain cells and she doesn’t remember having OCD, therefore, granting her wish. How sad that she couldn’t realize in the sunset of her life, that she is not being tortured by a disorder that has virtually destroyed her life, her 2 marriages and effected her only daughter… I guess we have, in some respect, mended our fences, which is comforting. Not in a way we would have chosen, but it’s done. The other irony of this story, is that I have always aspired to be exactly like my grandmother who influenced my life tremendously as I was growing up. In the later years, my grandmother was the caretaker of my grandfather with dementia… Poof…the universe has granted my wish. I am my mother’s caretaker. Life is strange. Be careful what you ask for in life…you never know in what form the universe will grant your wish.

You Gotta Have a Sense of Humor!

Posted on January 7, 2014 by Lynn Brophy

Sarters_young

I remember a day about 4 years ago, where my mother was in the rebel years of her disease, very argumentative, confrontational and angry. That was before the good Dr. Steinberg was on the scene making peace of our lives, with his very special and tailored to fit cocktail. This morning she got up on the wrong side of the bed and proceeded during the day with quite a chip on her shoulder. This was still at a time when we were trying to make sense of the situation and she was still able to be left alone. This particular day, we went out to do some food shopping on the weekend. The weekend time is very valuable in that we are at work all week long and only have 2 days to get it together to prepare for another work week…typically called the “rat race” and for a good reason. When we got home I went in to check on Mom, and I was presented with her, dressed in a pillowcase. That’s right, you heard right, a pillowcase…a white pillowcase. She cut a hole in the top for her head and two small holes on each side for her arms and stood there like a stuffed pheasant posing for a family portrait.

At first, I wasn’t sure what was happening. I just looked at her trying to make sense of it all. Then I realized she was in the middle of a dementia moment. She claimed that she had no clothes to wear and that was all that she could find in her closet. Of course there is a closet full of clothing for her to wear, but she didn’t see it that way. I wasn’t very diplomatic at that time and I definitely didn’t completely understand what was happening to my mother or our lives. I just knew for sure that my mother, was standing in her room, wearing a white pillowcase looking like a geriatric go-go dancer in a mini-dress. Not a pretty picture. Looking back at it now I find it really comical. Actually, when you think about it, she was very creative. Not sure I would have thought to do that in the event that I had nothing to wear. You have to think to yourself, “someday we will look back and laugh about this”. You really gotta have a sense of humor to survive this disease, seriously, both for the afflicted and the family of the afflicted.

How Did We Get Here?

Posted on January 5, 2014 by Lynn Brophy

Looking back about 6 years, the day started normally, going to work on a gorgeous summer morning, taking the back country roads that I like to call the scenic route. During the work day, I received a phone call from someone named Linda. She told me that she was the apartment manager in California where my mother lived and that she had fallen, broken her hip and rushed to the hospital after being found on the floor of her apartment, screaming for help. Not knowing exactly how to handle this situation from across the country, I asked for her opinion on what to do. She advised me to call the hospital to find out the status of what was going on and then make a decision on what to do. What she did offer, was to never let her get into the CA state system.

So, with that I called Scripts hospital in San Diego, CA and found that she had indeed broken her hip and needed a replacement. There was nothing that I could do now as she needed surgery and I was to call later that morning. She pulled through surgery with her new hip but after a few days in the hospital, it became clear that she was a sundowner, something that often happens to the elderly after anesthesia in turn expediting the onset of dementia. Not knowing that at the time, I couldn’t understand what was happening when listening to her paranoia and hostility on the phone. Apparently, she was giving everyone in the hospital a hard time, mostly towards the end of the day, making it very hard to provide her daily care. To compound the situation, she also suffers from a lifetime disorder called OCD which made her care even more challenging.

Still not knowing how to respond or proceed, I called my step-brother Dwight who lives in CA with his wife Aggie. He agreed to go down to San Diego and check out the reality of the situation and look for respite places for Mom to recoup before I came out to accompany her back to my house in NY. He was my hero…he came down, filled me in on all the things that I needed to know, found a nice place for her to stay for a few weeks until she was able to fly, bought her a few little shmocks to wear in the hospital and rehab and then went home. Through him, I was able to understand that she was now a frail little shell of the woman that we remembered and that I shouldn’t be surprised when I see her. Mere understatement…leaving me still wondering, how did we get here?

Boomerang-Parents

Omg…My Elderly Mother has Dementia and is Living with Me!

Category Archives: Dementia, The Babyboomer Dilemna