A Day Off…but not really!

Posted on January 30, 2014 by Lynn Brophy

Me, baking at Aunt Lillian’s House,
a Million Years Ago!

Miss Tonya

Well, here it is, the end of January and I took a planned day off. Not necessarily for fun, but because I had 2 doctor appointments. Again, not necessarily for me, one for Tonya the dog to get her yearly shots and the second for my mother’s every 3 month appointment. Don’t get me wrong, I love having a day off, my time, time at home in the house I work so hard to pay for, but at the same time, I would love for life to slow down a bit so that I could actually sit back and enjoy my own time.

There are so many things in life that I would love to do, such as working on this blog, my artwork, a winter sport of crocheting, indoor gardening, cooking, sewing, all things that I love doing. All the things that actually make me who I am, but unfortunately, poof, reality hits and there you are. Of course, I want to do all that can for the well-being of my family members, but what has changed from 30 years ago? We took care of the family back then also, but today, something has changed to make life, one task after another with no relief in-between.

No matter, we do it for the better of the family, for the better of the household, for the better of everyone, except us. Life in this milenium has most women losing themselves, losing who they are or were or aspire to be, and wondering where the simplicity of the past has gone. There is definitely something to be said for the wonder years, for the baby boomers, the 50’s and 60’s. The 70’s were more simplistic, even with all the unrest.

The one person that saved the day was Cardine!

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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!

Monthly Archives: January 2014