Isn’t Having Dementia Enough?

Posted on August 28, 2014 by Lynn Brophy

The above pictures are (1) of my son Shad with Mom back in the 80’s. (2) Shad and myself, also in the 80’s.

It’s been an eventful few weeks at my house. My son, Shad visited for the first time in a very long time. He hasn’t seen my Mom, literally in years with her living in CA and he in NC. I also have not seen him for a long time, so it was a very welcomed visit. Life responsibilities just seem to take over our daily routines and before you know it, years have gone by. Not sure why that happens more these days than in years past, but my guess is that today’s world is more complex and complicated. There’s just more to do in our daily routines which leaves little time for what is really important.

With the anticipation and preparation leading up to his visit this past weekend, I had also received a call from Mom’s primary doctor about recent blood work performed. Apparently, her blood counts were very low and she is drastically anemic. Her red blood cells are “big”. I replied, you mean they are high, but he said no, they are big. He informed me that he would do a folate test which could be the problem, but he doubted that it was the problem. As predicted, the folate test came back normal and he informed me that Mom would need to see a hematologist. He gave me a name of one in our group and I made the appointment.

After seeing him, I was given the same information as her primary doctor gave me, but now he is advising a bone marrow test. I wasn’t at all sure that was a good idea, given her age and mental state but he said that if I didn’t follow through, that I had better get her “do not rescesitate” docs in order. With that, of course, I made the appointment. My son was in for this appointment but she was unable to tolerate taking the test and the doctor decided not to force her, again with her age and mental capacity. We were told that another extensive blood test would be performed to see if a marker could be seen so that he could identify and treat her….otherwise, she will probably need blood transfusions. The bad part of transfusions is that, they will only do them in a hospital and with her weak immune system, it’s almost sure she will get some bacteria while admitted…so it is a lose-lose situation. What to do?

He told me that we are probably looking at Supportive Care, meaning hospice. I can’t help but think that we’ve come all this way, and to lose her to some sort of Leukemia is just wrong. Her sister Lillian succumbed to Leukemia almost 40 years ago but I don’t think it was the same type. Her father was a bleeder, which also leads me to believe that there is some genetic blood disorder prevalent to the Sarter bloodline which can appear at any age. Of course, I am not sure, but it is what I am feeling from what I am seeing at this point in time.

Makes me wonder what kind of a cruel joke is being played on her. Isn’t having dementia enough for her to handle, isn’t having OCD her whole life a heavy enough cross to bare? Will she have to wait until her next time around to have a good life? I wonder.

Just can’t see the silk lining in this situation. I can’t help but thinking..isn’t having dementia enough in a person’s golden years?

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Dementia vs. Alzheimer’s Disease

Posted on August 10, 2014 by Lynn Brophy

Last week at work, I was having an interesting conversation with a co-worker / friend about the differences between dementia and Alzheimer’s disease. We both were having trouble coming up with a definition. The 2 terms are used next to each other all the time and many of us really don’t know the difference between them.

When my mother was diagnosed with dementia after her brain scan, I was never told what type of dementia that she had. I still don’t know. I’ve asked the doctor a few times but he never really gives me a breakdown of her dementia diagnosis. The word Alzheimer’s was never ever brought up in conversation so I can only assume that she is not suffering from that end of it. Since her father also had dementia and she seems to be following in his footsteps and appears to be a textbook case of everything that I’ve ever read, we consider her having dementia.

Yesterday, I was having a haircut with a who I’ve gone to for almost 30 years. I have followed her from salon to salon because she is about the only person in the world who knows every cowlick on my head and every twist in my fine hair… she knows almost every little thing about me after all of our appointments over the years not to mention all the conversations that we’ve had about our families and life in general. She’s very informative and seems to know a lot about a lot of stuff! I guess that’s only natural when your occupation revolves around conversation with your customers for many years plus the best haircut in town!

Sitting in her chair, we were going through our usual what’s new conversation when she had asked about my mother.That brought to mind my talk with my co-worker, so I mentioned that to her.

Just what is the difference between Dementia and Alzheimer’s disease?

Why is it such a dilemma when trying to nail down an exact definition? Good question, I thought to myself. With that, she says…I was just talking to one of my customers the other day about that, who just happens to be a nurse. She gave me a very simple and easy way to tell the difference.

She said: Dementia is when you can’t find your keys, for example. You misplaced or hid them and can’t find them. Alzheimer’s is when you don’t know what a key is. That was about the best analogy on the subject that I’ve ever heard. That made it crystal clear about the differences between Demenia vs. Alzheimer’s disease.

https://www.facebook.com/pages/Boomerang-Parents/819842241360009?ref_type=bookmark

Dementia Patient’s Have a Mind of Their Own

Posted on July 27, 2014 by Lynn Brophy

Last week, as I wrote about in yesterday’s post, we took my mother to the doctor. Usually, she puts up quick a fuss about not wanting to go and there is a great deal of dialog going around and around as with all dementia patients when there is change in the routine. This time, oddly enough, she really didn’t protest, she just went with the program and all seemed well. She moved very slowly, so of course, it took twice as long as usual to get her to the car, into the car, out of the car and into the office. And Oh Lord, walking into the examining room was was a trip!

Well, we are sitting in the waiting room, as we have done so many times before, I am playing with my phone and after getting bored with that, I started to look at the magazines on display. Cardine is on the other side of her, watching the news tv they have on the wall these days in the doctor’s office. I pick a few magazines to look at. They were on a table in-between my mother’s seat and my own. I’m sitting there… la-dee-da, reading going through the magazines, happy as a clam, when Mom turns and starts eyeing the array of magazines on the table. She reaches out and takes about 4 magazines, puts them on her lap and starts to breeze through the top one.

Now, why would I be surprised about this? Well, never but never, in all the time that she has ben with me has she ever wanted to read a magazine in a doctor’s office. It’s always been offered and I was turned down every time. I stopped asking after awhile. But this day, she had it in her head that she wanted to look at magazines. Ok, I was happy about that, it was a good thing. She was engaging herself into something, showing curiosity which I found very promising.

With that, Cardine reaches over to take one from her so that she could read it. My mother grabbed the magazines and held onto them like it was her first born, not saying a word, just holding on tight. Cardine of course let go and went with the moment knowing she was not going to win against Mom’s determination.

Below is a photo of Mom and Cardine sitting in the wating room after the tug of war occurred. The younger photo is of Mom (right) and a friend.

Then the nurse came out to call us into the examination room. We said, ok, it’s time to go in, and instructed Mom to put down the magazines. You can only imagine…she wouldn’t put them down, refused as a matter of fact. It was becoming comical at this point so we just ran with the ball. We let her keep the magazines and proceeded to go into the examination room at a snail’s pace. Glad nobody was behind us, but they are very understanding in this office as her doctor is a geriatric doctor and is used to this behavior.

I’ve thought about this incident all week and in looking back, it was really quite funny…not making fun but it was sort of like a sit-com on tv watching her and Cardine tugging back and forth with these magazines. and to think that she actually was interested in seeing the pictures was impressive to me.

Just goes to show you that you can never predict on past behavior with a dementia patient. Every day is a different day, every experience is unique and it remains quite a mystery as to what is going on in their minds.

Dementia and Parkinson’s

Posted on July 26, 2014 by Lynn Brophy

Last Friday, Cardine and I took Mom to the doctor for a look see because she’s not been eating well, leaning to one side and seems very tired in the morning with muscle weakness.They were able to fit us in and I was just as glad because I thought it would be my last day of medical leave. The doc didn’t like her tremors and said that all her symptoms that we are complaining about are brought on by the medication which in turn causes Parkinson’s. He left a message with the doctor who actually prescribes this medication and suggested that they talk to try and change her medication recipe a bit to ease up on the symptoms. Seems ironic that the medication that is helping her with dementia and actually giving her another disease? It’s a bad joke. Guess the drug companies don’t think about that or maybe they think it’s worth the risk?

Got a call from the prescribing doc this afternoon Monday, suggesting that he wants to see her right away. I was able to schedule an appointment for the end of the month only I won’t be able to take them. She is covered by car service which I don’t really like to use if I don’t have to as I would rather drive them myself but since I’ve been out of the office for over 3 weeks now, that doesn’t seem possible…so Cardine and Mom will go by themselves.

It always makes me nervous to change the medical cocktail because you never know how she will adjust to it. Maybe it’s a good thing, who knows. Maybe it will reverse her tremors…it’s worth a try. Sometimes you just have to have faith that you are doing the right thing and that all will be well.

Above, a photo of Mom at the doctor visit from Friday. She is more and more reminding me of her father, with the all too familiar void eyes. The other is Mom as a child, up in a treehouse. I always find it so hard to understand the aging process, how someone can be so full of life at one time and so vulnerable later on. Aging is not a dignified process in cases like this.

Can Eating Sugar Add to our Chances of Developing Dementia?

Posted on July 20, 2014 by Lynn Brophy

http://www.dailymail.co.uk/health/article-2683174/Is-SUGAR-responsible-rising-dementia-cases-High-levels-glucose-cause-memory-loss-study-finds.html

Can eating sugar add to our chances of developing dementia? I found this article that might be of some interest. It states that eating a lot of sugar through our lives can indeed add to the chances that we will develop dementia later in life. If that’s the case, we all are in trouble, myself being at the top of the list. I no longer overdose on sugar as I am diabetic at all of 100 lbs. but none-the-less, sugar was a large part of my life at one time.

My mother also loved her sweets as she came from a family who had baked goods in the house at all times. Her mother, my grandmother, baked on a daily basis, making the best chocolate chips that I have ever had. Oddly enough, after she passed away, I kept one of her chocolate chip cookies and still have it to this day…I know, just crazy, but she was known for them….a memory. Both my grandmother and grandfather and anyone who came to the house would have access to cakes, cupcakes and all sorts of cookies, especially around the holidays. After dinner at night, they would often offer a bowl of ice cream along with it and of course, with a cherry on top.

I’m not sure if they knew it would be bad for us in the long term, it was just their way from their generation. It was what they did back then as the women didn’t go to work as in today’s world, they stayed home and prepared the meals, kept the house and took care of the kids. It was a simpler way of life… Where did that way of life go? I believe that if they had known what we know now about health, they wouldn’t have over indulged in sweets but would have consumed it in moderation. If you look at photos from your family back then, you will see that most people had large waistlines as they grew older. I know all of them from back then in my family photos are overweight such as the photos posted. Even so, they all seemed to have lived to a ripe old age. Did they develop diabetes…would they have even known back then? Makes you wonder…

In the Land of Dementia, Every Day is a New Day!

Posted on July 19, 2014 by Lynn Brophy

Still home on medical leave so naturally I am getting up about an hour later than my normal 5 am alarm which has been absolutely delightful for a change. This morning I wake up to find Mom very quietly sitting on her bed and starring at her shoes, right hand shaking wildly from the Parkinson’s involvement. I ask her what she is doing and as usual, she replies I don’t know. I say to her that maybe she should lay down for a few minutes until Cardine arrives because she would be more comfortable and she agrees, but doesn’t respond. Every day around here with Mom is a new day in her progress in dementia.

I’ve noticed this week that she is very unresponsive to what we are saying to her. For instance, last night I am asking her to lay down because it was bed time. She totally heard what I was saying, and even agreed but when it was time to follow through, she had no idea as to what to do. What is that? I am having a hard time understanding. She hears me, she agrees but then doesn’t know how to do it. Wouldn’t it just be instinct, something that she just does without thinking? Of course, I am probably all wrong about that as the mind is mystery but I am sure the doctors have a word for this stage of the behavior. This scene from last night played out by Vladimir coming in and physically lifting her up and gently putting her in the bed.

This week I have noticed that she is slower and more unsteady on her feet. We have tried to put the walker in front of her for a more steady and secure walk. sometimes she accepts it and sometimes not. She’s definitely at the point where she will need both a walker and transport chair to get around as just walking from the kitchen to her bedroom is a far walk for her. Seems that in the last year, there has been a huge decline in her disease. You don’t really notice it so much day to day, yet when you look back weeks and months, it becomes very obvious that she has spiraled downward. You can only do the best that you can to make the day a good one for her. Cardine accomplishes that with everything she does. They normally have a very good day with Cardine engaging her in puzzles, coloring, conversation, newspaper reading. They do it together, even if Mom doesn’t particiate. Cardine will sit across the table and just do it while Mom watches her and she seems interested and engaged. Cardine is a very loving, patient and caring home aide. I am very happy and blessed to have her in our lives.

Dementia and Finger Painting Go Together

Posted on July 16, 2014 by Lynn Brophy

Still home on medical leave and although my time off was brought on by a surgery and hospital stay, I am happy to be home during the day and catch up with my life which under normal circumstances never would have happened. Normal life has a way of doing that.

While being home, I’ve noticed more and more that Mom is a different person every day. Yesterday she was fascinated with the snaps on her nightgown, keeping her busy for hours. This morning it was taking a spoon
and scraping dried ice cream from her night before that I forgot to take out of her room. Later who knows what
little thing that might catch her eye and mind. A few nights ago I went into the kitchen to prepare dinner and
when I went to check on her she had a large paper towel on her little table. she had poured water on it and proceeded to finger paint with her Desitin. She looked like an over grown child having a good old time finger painting in her own little world. I guess people with dementia find fun in the little things.

I’ve bought her crayons and a coloring book which she doesn’t seem to have any interest in. Cardine sits
and colors and Mom just sits there and watches her do it. Cardine is so good with her, she understands how her mind works. I’m not there yet but I am trying. Before I brought Cardine on board, Mom used to love to use her markers to mark all of her clothing and sheets. I finally had to take them away as she was making a big mess. She had a pair of small scissors which she would sometimes cut her blankets, sheets and clothing. Still can’t figure out why she would want to do that, but in her head it made perfect sense. Of course, I took away the scissors!

Bottom line is, that you can’t trust them with mostly anything, the simplest of things, unless they are being monitored. You see an object in one way but they see it quite differently and you never know what creative ways they will use it.

Bottom line is that this disease of dementia is nasty, no matter which way you look at it.

My Demented Mother has Turned into a 2 Year Old

Posted on July 10, 2014 by Lynn Brophy

It’s summer time, I’m home recouperating from a recent surgery in the hospital which is giving me a lot of time for reflection. The photos above have always been favorites of mine, I guess because it shows Mom as a young blonde haired girl with a world of possibilities ahead of her. To look at these images, there are no signs of OCD, no signs of depression and no signs that there was a troubled life waiting for her in adulthood. My guess is, that these photos were taken at Coney Island Beach.

Since I’ve been home during work hours, I’ve noticed that Mom has really been declining. She has good days and bad days and you never know what you will get. It could be good one minute and 5 minutes later it could turn. For instance, this morning, Cardine was trying to give her medication and she would push them out of her mouth with her tongue. What is that…it’s 2 year old behavior. When we kept telling her to take the medication she stands up and tells Cardine that she will smash her face. I’m having a really hard time understanding this behavior from an otherwise very sweet woman. Cardine handles it very well as she is trained to do so. I, on the other hand have a very hard time watching my mother behave like this.

In the past 2 weeks, she’s not been eating well. She plays with her food and then eventually just pushes it away. When you try to feed her, she won’t take it. I called the doctor to ask for advice on what to do. They took 3 days to call back and I still don’t have any good answer as to what to do. I actually hung up a little annoyed after to talking to the nurse practitioner, not the doctor. Meanwhile, we’ve been giving her Ensure when she will take it, offering her meals and happy with what she does eat. Let’s see where this goes.

So, I know that dementia is a one way road…there is no cure. I know we are closer to the void and I am not sure where we go from there. My demented mother is sinking deeper into her disease as every day passes and there is nothing that I can do to stop it. Even knowing all of that, my mind still can’t help thinking about what more I can be doing to make it better. I bless Cardine’s patience everyday of the week!

Mom’s Parents, My grandparents…we miss them!

Posted on July 8, 2014 by Lynn Brophy

It’s been 35 years since Mom’s parents passed away…my grandparents. They were large in my life and I can see they were also large in Mom’s life as well.

Mom came from a stable family with a sister Lillian and 2 parents who were happily married for more years than I can remember. I spent most of my younger life at their house and loved every minute of it.

Mom’s father suffered with Dementia with the final stages in a wheelchair, with complete void in his eyes, In my heart, I know that’s where my mother is going as I can see the similar progression every day. There is nothing that can stop it, even with the modern technologies that her father didn’t have access to at that time. Once diagnosed, it’s inevitable, like a train staring you in the eye as it comes down the track. Nothing will stop it.

Lillian, Mom’s mother was a shy and private woman with translucent blue eyes like the skies above. When she looked at you, you knew exactly if she was angry or happy with you as she would get those frown lines on her forehead, with the smaller ice blue cornea and very small pupils, her eyes told us the temperature of the situation. She loved to bake and she did it well. She made the best cakes, cupcakes and chocolate chip cookies ever. She didn’t go out to socialize but people did come to the house occasionally to visit. Looking back, she appeared very reclusive, so I know that I come by that trait quite honestly. My grandfather Bruno was very social and the adult man in my life. He loved to be in the basement in his workshop to make toys and furniture. He loved to tinker with wood and make his ideas come to life in what he built. He loved children…They were the traditional old-fashioned parents and grandparents and were the stabilizing force in my life. I am grateful for their presence in my life.

Above are a few photos of Mom’s parents…my grandparents!

Mother’s Day, Dementia and Life Lessons

Posted on May 28, 2014 by Lynn Brophy

It was Mother’s Day a few weeks ago and I have found myself doing a lot of reminiscing and soul searching since then. Life with my mother wasn’t always an easy one and I wasn’t always an easy kid to live with either. Mom was burdened with her OCD disorder which in itself was a total life disruption for a kid. It made daily life a struggle for the both of us. There was nothing normal about our lifestyle and if you were the sort of person who craved a close family life similar to the all American Cleavers, it was a daily challenge.

I was a tomboy for as long as I could remember as a kid. As I got close to 12 years old, I also became quite rebellious having seen how my friend’s families were living and interacting at home. It created a lifelong yearning for the large and close knit family, which I am sure is why I love the Walton’s tv series so much. I’ve seen every episode about a million times and it doesn’t look like I will give it up any time soon. Makes me feel as if I am home when I watch shows like the Walton’s and Little House on the Prairie. Probably not realistic, but there you have it. It works for me to project myself into those families.

With all that said, I’ve been reflecting about the years of my life living with my mother, the years raising my children and how, even though I was acutely aware of my mother’s insufficiencies as a parent when I was growing up, I seemed to have acquired a complete lack of knowledge on how to relate to children. Under the circumstances, it was no big surprise. I swore I would never be like her, and I am very much my own person but having been brought up in that atmosphere, there’s no way you can come out without bringing some baggage along with you. I may not be carrying the heavy weight of the OCD affliction, thank goodness, but there’s something there, something that I can’t put my finger on, something that prevents me from moving forward in life.

I was clearly a product of my earlier environment. I can look back and see that now and although I wish that I could have a redo, I know that there are no “command z’s” in life. There are no redos…there are just the memories of yesterday, today and all the tomorrows ahead, carrying forward what you have learned from this life lesson…and it is a lesson. Everything that we go through in life, happy or sad is a lesson to be learned. Hopefully my mother and myself have worked through what we are here to learn from one another. Maybe dementia was part of that lesson and maybe me being her caretaker was all in the universal plan.

Boomerang-Parents

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