RIP Mom, Free from Dementia and Finally With Your Mother…

Posted on September 30, 2014 by Lynn Brophy

Pictured above: (1) Mom looking very young and attractive with her whole life ahead of her…career girl, (2) Mom with her Mom, Dad and Sister Lillian on a family trip…always a mama’s girl, (3) Mom a week ago looking happy and healthy.

I can hardly believe or accept the natural progression of life…doesn’t seem fair somehow.

Well, it’s a new day and one that I wasn’t looking forward to. Mom passed away this past Sunday, September 28^th. She is finally with her Mother, having a clear head with no suffering. No more dementia, no more Parkinson’s disease and no more leukemia. Finally free.

I hadn’t been posting in the past month because there just wasn’t any time to do so with the stresses of the situation, so I did post an update earlier today so there was natural progression of what was happening. That being said…

Last week was her final week and it was a hard one. The Friday before was the last day that she could stand or walk…she was too weak by Monday and was totally bed ridden, although she wasn’t aware of not being able to walk or stand. She would try to get up all night, every night, scooting down to the end of the full bed rails where there is a space to get out of bed. One night I actually slept at the end of the bed so she couldn’t do that. Vladimir spent the rest of the nights, holding her hand until Wednesday when she went into a semi-asleep stage. She no longer appeared awake or speaking. She hadn’t eaten or had anything to drink in days. When her mind was awake, her eyes were still closed, but she could definitely hear what you were saying. While awake, her hand would flail around from the Parkinson’s disease, and would be still while sleeping.

After my alarm went off Friday morning at 5am, I just had this nagging feeling, like I shouldn’t go to work that day…but me being me, of course I went as to not rock the boat. I wasn’t there 2 hours when I got a text from Cardine that her breathing was heavy. That was it…I was out of there within 5 minutes…like a blur.

Called the hospice nurse to come and was hoping that she would be there before I got home. She wasn’t, so we waited…when she got there, she noticed that we had her dressed in layers and was completely overheated. We had been told by the doctor that she was extremely anemic and should be kept warm. What nobody told us, was that when the body is at the end of life, it sweats profusely, which was the case with Mom.

She instructed us to take off the layers, cut a t-shirt as if it was a hospital gown, take off the blanket and just use a sheet. Open the windows and put on a fan, which of course we did. She cooled off after a sponge bath and all seemed to be well…all except that she still no longer was 100% conscious. The nurse took her vitals and told me that her pulse was extremely high and her body was working very hard to sustain her. She told me that she though it would only be a couple of days. The thought of that scared me to death.

That night while sitting in the room with Cardine, Mom all of a sudden started calling clear as a bell, Mom…Mom…very slowly but very clear. Cardine and I both looked at each other knowing exactly what was happening….her Mom had finally come to get her just as she had with Mom’s father, my grandfather.

Saturday came and everything seemed status quo…but still there was that awful black cloud hanging overhead that something could happen at any time. I stayed close to home even though Ashley, the Saturday aide came. I wanted to see her through to the end and was very grateful that I wasn’t at work. Not sure that I would ever feel the same about working if I was there when it happened.

Got through Saturday like a champ and hoped that we could go on for a few more days. Sunday came and I noticed that her skin was appearing yellow and I knew that wasn’t a good sign. Her liver had stopped cleaning the toxins in her body. I sat with her doing little things like looking through old photos for this blog, etc. The whole time I was searching through the old photos, I was talking with her about her younger life, working in Manhattan at all the important positions that she held, which I know was a very happy and important part of her life. I spoke about the places that we have lived and the things that occurred back in the day…the good things! Told her that I loved her…

At 2:30 pm the hospice aide came…first time, as I am usually alone with her on Sunday. I now wish I could have been alone with her this day…but they sent someone and that was it. She wasn’t there 30 minutes and Mom went into a very heavy breathing pattern accompanied by a moaning sound…almost sounding like Mom…Mom…Mom. By 3:20 I watched her take her last breadth. It was the saddest day of my life. For her, she was finally no longer suffering and with her Mother once again. The Mother who she has been searching for over the past few years.

Rest in Peace Mom. I love you!

Dementia, Parkinson’s Disease and Acute Leukemia…What Next?

Posted on September 30, 2014 by Lynn Brophy

Pictured above (1) A young Mom with a very young me. (2) Older sister Lillian and very young Mom looking very cute with her blonde hair!
Makes you wonder how a person can from there to where we are now.

It’s been a month since I posted last. It’s been a very active month for us after the out-of-left-field, ambush diagnosis of acute leukemia and I’m actually still processing and adjusting to the inevitable. After the diagnosis, things seemed status quo while Shad was visiting. I began to feel that they must have mis-diagnosed her. She was still walking around and looking out the window during the day, still eating her 3 meals a day with in-between snacks, still stubborn, still interested in life.

Then, little by little her mobility started declining. She was getting up less during the day, not as interested in what was going on outside the house or around her, her appetite was dwindling off and was having problems swallowing. It was very obvious that something was happening. She was agitated more than usual, started to feel frightened, especially at night. She also started getting night sweats and became very panicked and scared in the night time hours. One night I slept at the end of her bed so that she couldn’t get up and wander around the house in fear of her falling.

All this happened little by little, but here we are at the end of September and she can no longer stand up or get out of bed. Some days she eats nothing at all. She is still taking fluids although it’s not much to speak about. She sleeps rarely, like she is in a complete manic phase which effects everyone in the house. I’m not at all sure what meds she’s taking now are working for her. I actually think that one of the new meds are having an opposite effect on her.

She’s afraid to be alone and has stated very clearly that she is dying but when asked, she can’t explain why she feels that way…she just senses it, I guess. She said she has seen people and we all know what that means. They are waiting for her on the other side. I can only imagine how frightened that she must be. With the effects of dementia and Parkinson’s disease which makes her not in her right head anyway, and the speed of which she is losing the other abilities in her life due to acute leukemia, she must feel horrified of what is to come next…

and there is nothing that we can do other than to be with her, hold her hand and comfort her until the end.

What else can anyone do at a time like this? We all do the best we can.

[contact-form][contact-field label=’Name’ type=’name’ required=’1’/][contact-field label=’Email’ type=’email’ required=’1’/][contact-field label=’Comment’ type=’textarea’ required=’1’/][/contact-form]

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?

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.

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!

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!

Category Archives: Dementia, The Babyboomer Dilemna