Mom’s Dementia, Time To Think About a New Approach to Her Dementia Care

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It’s been a very long week in our house. I am feeling that Mom has downward spiraled to another stage of this horrid disease. Her dementia care keeps needing updates without warning. The dementia stages are mind boggling if you are not ready for them. She’s been trying to leave the house more often in the day. There was a time, where she used to only try to leave when sun-downing at the end of the day. Now she is starting her dash to the door at a moment’s notice, at any time of the day, which can be set off by just asking her to wash her hair or take a bath. Somehow I can hardly picture her dashing to anywhere since she shuffles and walks at the speed of lava. A few times, poor Cardine, her home aide, had to text me to call the house so that I could talk her off the ledge. She would be so determined to leave the house…go look for a job, look for an apartment, go to find her mother, just whatever came into her head.

It’s becoming a dilemma. Thankfully, we are due to go to the doctor this Wednesday for her progress checkup, so this is something we can discuss at this visit. Having said that, I am already stressing about getting her to cooperate in getting dressed and out the door. Hopefully I can put on the Pavarotti Cd which will make her calmer and more cooperative. What I suppose will happen, is that the doctor will up one of her meds, but at the same time, I don’t want her to be sleeping all day long either. She’s finally sleeping at night so I don’t want her days and nights mixed up. Plus she needs to have her brain engaged with something that makes her happy. It’s the only way to slow down her progression of this nasty disease.

mom_doc_july14Another issue we’ve been having is that she will almost be falling out of the bed by morning. She leans to one side, never the other and by the time morning comes, her head is on her night table, not a good thing. It’s just too strange. I’ve tried putting her in the middle of her bed at night but she is still hanging off by morning. Might be time to get a bed rail, which she will be none too pleased with…another daily challenge I see coming. We shall see.

Photos Above: (1) Mom on the left and Theresa my mother-in-law on the right. (2) Mom way back when she was working, living in San Diego, sitting in front her her typewriter, something that she loved. The good ole’ days…before our parents were boomeranging. Below (3) Mom at the doctor’s office.

Theresa, my mother in-law (pictured above) went on to be called Oma by just about everyone, including me and my Mom. She is still with us, happy, healthy with the exceptions of a few age related illnesses, but she’s got her head thank goodness. She presently lives with her daughter in CT. and is another Boomerang Parent. I wish that my own Mom was that lucky!

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Easter Sunday, Dementia, Mom and Memories of Her Sister Lillian

mom-sister_1929mom-sister2_1942It’s Easter Sunday, the sun is out, temps a bit cool, but it’s a happy, positive and upbeat day! The house is quiet and peaceful, just the way I like it and Mom started her day, on a bad note. She apparently got up in the middle of the night after having a little accident and took some of her night clothes off…so she woke up a little wet and cold. No matter, I got the situation under control and we were off to a better start. Got her breakfast, the Sunday newspaper and we sat together reading and eating. You never know what to expect with dementia or Alzheimer’s disease.

Photos: (1) Mom and Lillian as young ladies, (2) Lillian and Mom considerably younger, (3) Below, Mom and Lillian again, very young, probably 1929.

This afternoon, Mom is wandering around the house appearing to have a good ole’ day and I am sitting here thinking about Lillian, her big sister. Mom spends a lot of time talking about her older sister who she worshiped, as they were very close as they were growing up. Lillian passed away very early on of Leukemia, leaving 4 small children and a husband. They lived on the other side of the United States in the state of Washington, so we didn’t get to see her before she left us. Back then it was a big deal to fly across the country, especially for my grandparents who never ate out, let alone get on a plane to fly cross-country. I know that my grandmother had always felt somewhat guilty for Lillian’s Leukemia, even though she had absolutely nothing to do with it. Never-the-less, she couldn’t shake that feeling.

Lillian was a kind and gentle woman who was not only very intelligent but was lucky enough to have gone to college as well. She had always wanted to be a mother and was blessed with 4 beautiful children, Michael, David, Maggie and Mom-Lil_brookynSam, my cousins. I don’t have any siblings, so these first cousins are close to my heart. Matter of fact, there was a time that I almost became a part of their clan when Lillian and Bob wanted me to permanently come live with them when my mother’s OCD was out of control. Mom actually never wanted to be married with kids as Lillian had. She had only wanted a career in Manhattan which she had accomplished, it was her dream. I was really only holding her back when I think about it now…but she was a trooper. I never actually knew that fact as a child, so she hid it well. I’ve always wondered how my life would have been different if that had happened? I suspect, I would have been more educated, had more people skills, have made better choices in my life and would have had a male role model in Uncle Bob not to mention a very present mother figure. But that’s all hindsight now…we only have the here and now. Everything happens for a reason.

As a child, I remember Lillian and her family coming to visit my grandparent’s house, which is where I was most of the time while growing up. It wasn’t a big house but we always found room for the McCracken clan when they came to visit. To my delight, we kids would camp out on the floor on a big quilt in the living room. Aunt Lillian would come in and read to us…I thought it was amazing. Nobody had ever read to me when I was a kid…just Aunt Lillian, in her very soft, expressive and compassionate voice. You couldn’t help but love her. She was living her purpose, on her life’s course and obviously was very happy doing what she loved to do. And her kids loved her so much…they were lucky to have her and I believe they knew it. To me, they seemed to have a great life, great parents, brothers and sister…what could be better? Who was to know how things would change so drastically in the future with the passing of their Mom. It would be a life changer for their family.

From what I can remember, Lillian took after her father, my grandfather, who by the way, had dementia in his later years. She seemed to have more of him than my mother did actually, but that’s only my personal observations and opinion. I often wonder, had she of lived, would she be in the middle of this dementia curse as my mother is? We will never know. We only have the wonderful memories of Lillian and although Leukemia took her, she was spared the torture of dementia.

When I had originally written this post a year ago, I didn’t know that my mother with dementia would be gone by now. I thought for sure that I could get her to 90 years old…a milestone for our family, but it was not to be. Out of left field, she was diagnosed with Leukemia of all things, like her sister. As if having dementia and Parkinson’s wasn’t enough…she developed Leukemia. She was gone less than 2 months later. What are the chances that sisters would both have Leukemia? Hematologist told me that they both were probably exposed to something as children. Could my grandmother have known something, or suspected something, therefore feeling guilty all those years? I guess that I will never know the answer. She’s with her sister Lillian now, running around with the angels…waiting to welcome us someday.

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What Am I Trying to Say? Dementia thoughts…It’s Been a Week…

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Mom and her father, also with dementia.

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This week has been an unusual week for Mom. Not sure why, but we all know that every day is a new day with dementia patients. Who knows where these things come from but they happen and we deal with them as they unfold. It started out with the usual bath and hair wash on Monday and that was a good thing…as she needed it after the weekend. Cardine works her magic and manages to get her to cooperate. Then Tuesday came…..like a bad dream. Seemed okay in the morning, but then again she can fool us all when she has a mind to. Things can turn on a dime….

Once a month, the Visiting Nurse Service comes to give her a vitamin B12 shot due to a deficiency. So, this day, the nurse shows up and walks into Mom giving poor Cardine a run for her money. Apparently since I left in the morning, Mom has been giving Cardine a hard time. All morning she has been trying to leave and go to find her mother. We’re familiar with this but not necessarily at the start of a day. It usually happens when she is sundowning….later in the day. By the time the Visiting Nurse arrived at noon, Cardine was nervous and worn out, not to mention stressed….let’s not leave that out. At that point after the nurse witnessed what was happening, she called me at work. She told me that she was trying to leave the house and being very aggressive which was unusual. She thought I was still a child and that it was a bad situation. She thought perhaps I could have some influence on Mom if I spoke with her. They put her on the phone and I talked her off the ledge and stayed on the phone while her B12 shot was given and everything seemed to be all right. Afterwards, she took a nap and woke up normal and back to her old self. Thank goodness for small miracles.

She had another day of looking for her mother but it wasn’t as intense as on Tuesday. I was grateful for that. On Saturday, after I came home from my errands and appointments, I found that she had been working with her papers all day and was intensely writing on a greeting card seeming to be totally engrossed in what she was doing. I didn’t say anything because it was a good thing. At dinnertime when I came in to sit with her, I noticed a greeting card on the table next to me. While I was eating, I opened it out of curiosity. It is shown above. It says:

Dear L

Aas of linuse to g you anothew omng om thee tho rourte. up….to das sull–––keel thirn is turning imme my This is getting me ne me nousre,, Can’t rain the street!!! Don’t P got to gstap the misc….the lc s to N D. Dr t lakin I can’t s as of any thing any molbre. So long, well uille will well stand. Will I’pp.

Totally took me off guard. I mean, I know that she can’t speak correctly but on the other hand, I know that she knows what she wants to say. She just can’t get it out of her mouth. I didn’t know about how she would write it. This was an eye opener for me….a reality check. It means that although she knows what she wants to say, she cannot say it, or write it. How frustrating that must be for her. Knowing exactly what’s on your mind but trying to say it while seeing the blank look on your audience. It has GOT to be frustrating. She had always been a very smart and articulate person, reading, writing poems, working on her vocabulary throughout her whole life, doing crosswords, and hard ones at that. Now, she can’t express herself in any way. Unless you can guess at what she wants to say, there is no way you can understand what she is trying to say.

This greeting card, which was originally from me to her back in 2012, turned into a reality check for me. Can’t help but wonder, what she was trying to tell me. We will never know.

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Hello, Hello, Are You There? Old Friends.

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Mom and childhood friend

Although, Mom hasn’t seen Noreen for more years than I can count, I consider her one of her best friends. Noreen is someone with whom she worked with back in the good ole’ days in Manhattan. When Mom still had her head, she told me that she had actually hired Noreen back in the day and they went on to become close friends. Noreen lives in Texas with her son and to this day calls her every single weekend to touch base and chat. She calls even though she knows that sometimes Mom doesn’t remember who she is, and sometimes doesn’t make sense when she talks. She calls because she knows that being remembered and getting mental stimulation about the past is an important therapy in a dementia patient’s life. She’s not coming from an ego place where Mom must remember her or else she won’t call anymore, no, she’s coming from a place of compassion and love for her friend, no matter what the circumstances are. I’d call that pretty special.

Today, Noreen called, I picked up the phone and looked at the caller ID, and sure enough, a call from Texas. I head towards my mother’s room hoping that today she will remember how to answer the phone. I enter her room and I see her holding her teacup, bending over it saying repeatedly, “hello, hello, are you there?” I answered the phone so as not to lose Noreen’s call, we chatted for a moment, and then I put Mom on after taking the teacup from her. I literally stood there with my mouth open for a minute or two in disbelief. Even knowing and experiencing all that I do with Mom, when she does things like that, without a clue that what she was doing was totally demented, takes me off guard. She had absolutely no idea that that teacup was not the telephone. Someone in my position has to wonder how this can happen, how can it be possible?

It’s times like that when I know we are losing the battle, not the war as of yet, but the battle is definitely heading downhill. Even so,she’s having a good day, chatting in her own language, well mostly listening as Noreen is a good talker and keeps the conversation going while remembering the past times at the office. Mom is listening carefully not to miss a line and as always, very happy and grateful that someone has remembered her and would care to call her at all. It’s a hard thing for someone her age because even though she can’t retain much, when in the moment, she remembers that she has seen what little friends she’s had, die off from either disease or old age, leaving her feeling very alone and isolated from her own kind. You probably are thinking that I  say that like she is a different species from a different planet, but in a way, she is in a category of her own. In her own tribe so to speak.

With that said, I sit here writing this post, thankful for good and loyal friends, hoping that someday I will have that one good friend who won’t give up on me. Meanwhile, Mom is enjoying her Sunday afternoon listening to Pavaratti.

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Who Knows Where Life Will Take Us…

Lynn_3mths       Lynn_portrait

 

So who knows where life will take us… there are many beliefs and sometimes I have the belief of the predestined and at other times the crap shoot theory. There are the cards we are dealt and the roads we have chosen to travel, some with the possibilities of greatness and others surrounded with tragedy and heartache. How do we know which road to take…I don’t know, but I can tell you this…I am very aware the product of my life come both from my “hand dealt” in life and some very unwise choices…not so different than a lot of us. Not that all of my choices have been bad, but I have come to realize that the ability to make good choices in life can often be a product of how you grew up or should I say how you define your growing up experience.

That being said, looking back at some of these old photos makes me wonder what things could have been if different roads were taken. Pictured above, a 3 month old baby with a lifetime ahead of her, a 4 year old girl looking very promising. Happy, healthy, clean and taken care of…so what the heck happened? Was it that my mother had OCD and found it hard to be nurturing or that my father was a large child not getting too involved in anything other than his buddies? Was it because they never should have gotten married to begin with or can I look at it in the sense that everything happens for a reason, and in this case I was meant to be born? I do believe that theory now that I hear myself say it. I think that we are all meant to be here, for whatever reason, sometimes never understanding our purpose although searching for the rest of our lives. That doesn’t mean that our parents were meant to be married forever, but it just might mean that they were meant to have that brief time together so that I could be here. Maybe that was “their” purpose for that time period. I could ponder it for hours, days and years to come and never figure it out but it’s the way I have chosen to think about it.

Who knows where life will take us and what paths we will travel…my advise is to Follow the Yellow Brick Road…like the Good Witch told Dorothy,
“It’s always been right here”

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Dinner For 2 Please, Dementia Patients And Social Interaction

 

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There was a time when Mom would always sit at the kitchen table with the family and eat meals. That’s what the old timers did and families today still do it..thank goodness. Since she’s been at my house she’s never sat down at our kitchen table to eat dinner with the rest of us, except once when my son Shad came to visit. Not sitting at the table was mostly an OCD thing, but over the years, with the dementia setting in, she has forgotten about the OCD, but out of habit, still wouldn’t sit at the table. So, with that, she would opt to have dinner in her room and I, of course, humored her and served her dinner on a table in her room, which became the norm. If that’s what made her feel comfortable, I would of course, do that. I continued to eat in the kitchen, usually multi tasking while eating because there is not much of a window at night after the work day to get things done. Crazy way to live but that’s today’s world. 

Photos: Above (1) Mom, Eleanor Van Meter’s family, mother, father, sister, aunts and uncle out on a picnic, pre 1949. Below: (2) Mom after dinner on her 86th birthday…going to bed looking content, happy and tired.

Birthday 86

After Cardine, Mom’s home health aide started with us, I noticed that they would do things together in her room, such as eating lunch together, coloring or playing games. I also have noticed that Mom has directly responded to that by being more alert and in touch with reality. Cardine told me that Mom wouldn’t finish her lunch until she ate her lunch also. Mom would always leave some food on her plate saying it was for Cardine. I guess that she was feeling badly eating in front of Cardine, so she would take that as a hint to heat up her own lunch…sure enough, Mom would finish her lunch. I don’t know whether it is a “polite” thing or a “being in company” thing, but it seems obvious to me that she does better when eating in company with social interaction. As a matter of fact, looking back, she will never take the last of anything….even if it is the last chocolate chip cookie…..now that is self control…or perhaps a result of growing up in the depression years.

As a kid, she would always eat dinner at the table with her sister Lillian and her parents. When I came along, I would always sit at the table with my grandparents as well…seemed to be a family thing that she somehow lost along the way. Now, when I come home from work, I settle in and fix both of our dinner plates and I go sit in her room and eat with her. She eats all of the dinner on her plate happily, we have some conversation and we watch a tv show, even though she really doesn’t understand what is going on with the show, it doesn’t matter…it’s interaction and stimulation. She seems more alert and ready for her night after dinner. Btw…Vladimir doesn’t feel badly that I’ve abandoned him in the kitchen….mainly because he has always eaten every leftover in the fridge like a vacuum cleaner before I even get home, so he’s finished for the night.

After it all and in the end, I know that I will be happy that I had spent time eating dinner with her after work, creating some good quality time with her, knowing that she had a full stomach at the end of her day. It’s also a good thing for her interacting with people and engaging her brain. It’s a win-win situation.

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Oh No, I’m in the Doghouse Again…Dealing with Dementia Patients

Basic CMYKMondays are usually a stressful time for me when caring for a dementia patient, in that you’re bouncing off of a weekend, hopefully a good one…the alarm goes off at 5 am, you’re tired because you’ve been going to bed later than normal for the past 3 days but work is calling. You drag yourself out of bed, do all the things that you do in the early am and out of nowhere, Mom decides to get up early. I pass by her room, and notice her toes moving…I say to myself “OH NO…I’m not ready for her to get up yet, I am still trying to get ready for work” I pass by deliberately a few minutes later, and now I see her feet dangling off of the bed. I peek my head in her room and I say “It’s really, really, really early, you can go back to sleep for another hour”, praying that she will lay back down for awhile. As fate would have it, on this Monday morning, no such luck…I can see trouble in her eyes…or rather that weird stare when she goes into a dementia attack. I continue to go about my business thinking that maybe, just maybe she will give in and go back to sleep for an hour….nope…she’s up and shuffling towards my bedroom door…Happy Monday.

So, with that I make sure she’s not needing the bathroom, and I continue to go about my business in getting ready for work. When this happens in the morning, she reminds me of a lost kid, with all of us running all over the house from this room to the next in preparing for the day, and there she is standing there wondering what is happening. It’s obvious that she wants some attention paid to her but since she seems all right, we just keep doing what we are doing so we can stay on schedule for work. Vladimir leaves for work and now it’s just me, Mom and the dog, waiting for Cardine, her home health aide to come. I’m still running around trying to be done on time. Finally it’s 7:30 am and Cardine’s car pulls up. Tonya, the dog sits in the window eagerly waiting for her to walk through the door in anticipation of the usual snack that I leave for her when I go to work. Mom is standing there wondering what is happening going further and further into her dementia attack, and I am saying thank goodness Cardine is here, a sitcom in the making. After she arrives and settles in, I brief her on the morning, I say my normal goodbyes and I get a wicked awful blank stare from Mom. Her face is expressionless and her mouth is like a straight line across her face. She does this whenever she is angry with me….so, I just excuse myself and leave for work saying “Have a nice day ladies”. I wish I could think to take a photo of this because it’s a funny face…Mom was mad at me so I’m thinking Oh Boy…poor Cardine, Mom is in a tailspin and they will have a rough day and that’s never a good thing. On that note, I was gone…

Photos: (1) Mom and her home health aide, Cardine…my hero!

mom-cardineUpon my arrival home after work, I found that Mom let her anger go right after I left and Cardine had a wonderful day since Mom readily agreed to have a hair wash and a bath in the morning without a fight. People with dementia apparently let go of anger a lot faster than the rest of us, probably because their mind is in out of sight, out of mind mode…It was a good day for all….after all.

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Can Music Therapy Help Soothe Dementia Patients…it did for my Mom.

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Mom at a very young age sitting on the
stoop at the family house.

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We work all week long, getting up on Monday wishing our lives away for it to be Friday, only to have a hard weekend dealing with dementia attacks from Mom over the weekend. This weekend however, has been quiet and normal thanks to music therapy. She had a wonderful Saturday listening to Pavarotti cds all afternoon, which I can honestly say is her favorite thing to listen to. I actually feel it makes her normal, calm and puts her into a completely different head set making her thoughts clear. She can sit and listen to him all day and never tire of it, just sitting there as if in a trans, swaying back and forth to the music. She came to live with me with a love for Pavarotti’s music and in her mental void, that has held true.

Today, she is passing the time going through all of her papers, which of course, she loves to do. I know it makes her feel like she is in the office, which is her second love to Pavarotti. I enjoy seeing her involved in the things that she loves and although it’s not what we would choose to do for ourselves necessarily, it works for her life. Helping to make a dementia patient engaged and involved is helpful in that, they are not stressed, leading them away from dementia attacks. That helps both the patient and the caretaker to have a better day. Keeping a person with dementia engaged is key to helping to slow down the progression of the disease.

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Photos Above: (1) Mom as a little girl sitting on her front steps, (2) Mom out in California sitting at her home typerwritter.

She also has a lot of games and puzzles, but she much prefers the paperwork and music therapy. I have recently been given some brochures and information about people coming in to the house to give her music therapy during the work week when Cardine, her home aide is here. I think that would be a wonderful idea and would help to keep her mind moving during the day, while also give her something to look forward to. With spring coming on, it would be a good idea to start new things which will engage and stimulate her in different ways. There are probably organizations that would come in for arts and crafts as well. I think that Cardine would love that tool….she loves to color!

So, it’s a sunny and tranquil Sunday, and I find myself appreciating the day knowing that Mom is having a good day. Bring on Spring!

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Advanced Dementia Patients See the Other Side?

 

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Mom, Aunt Freda and Friend

 

Mom seems to have had 2 bad days in a row, leading into a sleepless night last night. Usually when she has these sleepless nights and walks around the house appearing to be in some sort of transe-like astonishment, I have no idea as to what she is thinking or experiencing. Last night, I finally got her to talk to me about it.

The evening went normally with her having dinner, meds, dessert, watching a little tv and then to sleep. I keep a low light on in her room as she seems to be afraid and disorientated in a completely dark room. We all went to bed around normal time and all was well, or so I thought. A few hours later I was woken up out of a dead sleep by Tonya the dog following my mother around the house. Tonya seems to instinctively know that my mother should be sleeping and not wandering around on her own, so she takes responsibility to keep an eye on her. When I got up to see what was going on, Tonya looks up as if to say…”ok, she’s your problem now”…and she goes off to bed. When I think of that, it’s really amazing how dogs just know and spring into action. She protects my mother without training…she just knows.

So after talking my mother off the ledge and back into her room, she finally sat at the edge of the bed appearing to be in some sort of trance, saying over and over again “I can’t believe it, what am I going to do? Where do we go? I can’t believe it.” It was as if she was traumatized having seen something incredible. After a half an hour of sitting there with her, asking her to go back to bed, she said again “I can’t believe it. I asked her “what can’t you believe, what happened?” She replied, death…there are a lot of people outside the house running up and down the street. I asked her what people…and she replied Dead People. I had to stop and think for a minute before replying…then repeating what she said…You see dead people? She confirmed that they are outside walking all around. I asked her if she saw her mother (family deceased in the photo above) and she replied, no. That would explain all that she said about not believing what she had seen…it’s incredible.

Now, do I assume she is having a dementia attack and hallucinating, or can I dare to believe that she got a rare glimpse of the other side because she is wandering on the outskirts of another dimension? Do old people in her position also see things like this? I don’t know but I will research it. I believe that there are things going on around us all the time that we can’t see. There are radio waves, tv waves back when we all used antennas on the roof, now there is wifi for our tvs and phones, wireless everything…and we can’t see it, but it’s there. When a baby is born, it has been said that they can remember their past life but cannot speak to verbalize it and forget as they start growing. Is it possible that Mom saw dead people? Since I can’t disprove it, I’d have to say yes.

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Mom’s Trip to the Doctor

young_pretty                    doc_office

Oh what a day it has been! Mom has out done herself today. Dementia patients have a hard time handling change of any kind and even though I know about that, it is always hard to deal with. Today’s change of routine was in the form of going to the doctor. I scheduled a vacation day so that I could take Cardine, her home aide, and my mother to her doctor appointment. Cardine arrived at 7:30 as usual, and we right away started waking Mom up so that she could get dressed and ready for her doctor appointment. Not sure when it all started going south, but from the moment she opened her eyes, she had decided that she was not going to the doctor both ignoring us and being very uncooperative. Cardine and I both looked at each other instinctively knowing that it was going to be a hard day ahead.

By almost 10am I had pretty much come to the conclusion that there was no way…negative…no way she was going to get dressed and leave the house for anything or anybody, so I reluctantly called to cancel the appointment. Not more than 5 minutes after I cancelled the appointment, she went into the bathroom for her morning routine and agreed to get dressed…and who knows why or what changed. I ran to the phone to call back and grabbed back her appointment hoping it wasn’t yet filled. Success, still open, so Cardine dressed her and we made our awkward way down the steep driveway to the car with the mother in tow each holding her up under her arms. I could hardly believe it…she was seat belted in and we were on our way and on time. We got to the doctor’s office, dropped her off at the front door and I went to park the car while Cardine and Mom went in. Although she had to wait quite awhile in the exam room, pictured above, she compensated by ignoring us and falling asleep on the table, obviously not happy with either of us or the situation. I look at the 2 photos above and wonder how can life look so beautiful and hopeful at one time and so sad in another. But apparently, for the most part, aside from the side effects of her meds causing an induced Parkinson’s disease, she is healthier than any of us with a good pulse and blood pressure. Considering how many sweets she eats, I am amazed…and a little confused!

Appointment went well after all the stress of the morning and we got home in one piece, gave her lunch with a bath chaser! I can tell you that she was none too happy about the bath! What is it about dementia patients that make them hate being bathed? Even so, at the end of the day, I have a somewhat healthy, clean and fed mother for the day. Tomorrow is another day. Let the weekend begin!

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