Saying Goodbye...

I am staring at this blank Word document and just do not know where to begin…

A lot has happened since my last blog post as most of you already know. My Grandmother passed away late last Saturday night after not eating or drinking for over three days. We had finally managed to get my father up to see her on Saturday afternoon and I truly believe that was what she was waiting on since all of the rest of the family had already made it there to be with her in the last three days. Her condition was still the same as the day before just less and less responses to my voice and touch. Hubby and I came back to see her again that Saturday evening around 8pm- we spent 30 or so minutes with her. I remember telling her that we were staying at her house again that night and would be back to see her the next morning and how much we loved her. She died two hours later. We were back there by 11pm and then had to endure the hospice coming in and pronouncing her, destroying all the leftover meds, and then preparing the body for pickup. And then the funeral home came in, gave me their instructions, etc. and then together with hospice they did the final preparations and took her away. I seemed to be floating around the entire time just trying to take it all in- watching them destroy the thousands of dollars of pills and those precious glaucoma eye drops, listening to the preacher talk about happier times, watching my brother breakdown at her bedside once he got there, watching them zip the body bag with her in it, listening to the funeral director instruct me on her burial outfit and how to transport it, and then being left with the mound of paperwork in hand once they leave with her. And all of that by 2am!
And then we had to be back at the funeral home by 10am to set up the arrangements. I am sitting at this table with the funeral director and my mother answering a thousand or so questions when I realize that never in my life did I ever think that I would be planning someone’s funeral… Not at my young age at least. And then my father and his wife show up and his input only makes the setting of the arrangements even harder. All in all, the meeting was a lot easier than I thought planning a funeral would be. Of course, I am sure that if her death was a sudden one, that planning would have been a lot harder. I spent the next couple days on the phone- seriously- the phone did not stop ringing. The amount of emails, text messages, Facebook messages and phone calls was overwhelming. There were a few times that I almost turned the phone off just to be able to get something else done- at least that is what Hubby kept threatening. I kept going through my phone list trying to make sure that I did not miss some distant family member and I am here to tell you that I AMAZED at how many folks STILL do not understand the concept of dementia- or the fact that you CAN die of it- or at least from the complications that result from advanced stage dementia. The weather during all of this was horrible too- the rain and storms just kept coming. We were trying to get her house and yard in order just in case someone dropped in. The visitation was Tuesday night- lots of folks that I have not seen a really long time came to pay their respects. I did really well on the “try not to cry” rule of mine until one of my Grandmother’s older friends started talking about “have no regrets” and all… Why is there always one person in the bunch that insists on upsetting the surviving family members? I just KNEW someone was going to do that- it never fails. Afterwards, we went out to supper in town with a group of my old buddies and how nice it was to catch up with them!
The funeral was late Wednesday morning and the weather actually cooperated! I had struggled for the few days before trying to pull together the pallbearer list, but it all worked out in the end. The service was wonderful, my Grandmother’s cousin played her favorite- Amazing Grace on the bagpipes at the graveside and then we had the most delicious lunch at the Church afterwards. You should have seen the spread of food these good folks from her Church put on! I just could not get over how much food was there. When we made it back to the house, all of the flowers and plants filled the den- had to sort them out- one to each Church, one to the Assisted Living, one to the Caregiver, one to Hospice, my mother, my father, and us. And then we had to sort the dishes folks brought to the house… it just never seemed to stop. We finally made it back to the city late that night since both of us had to go back to work. And now the large task of sorting her affairs is on the horizon- Lord help me with this arduous task- I am going to need it. Hopefully, closing and transferring accounts and settling the estate will go as smoothly as possible. I just hope the family members involved want to cooperate and help this transition go as easy as possible too. We shall see…

The Road Long Traveled

The call came in yesterday afternoon while I was in a long meeting at work. I did not get the voicemail until almost two hours later. My Grandmother had been non-responsive all day yesterday. She just slept all day in a deep slumber and the caregivers could not awaken her to eat, drink or take her meds. I called my Mom and she went over there after work to try herself. They tried everything to get some sort of response out of her- even putting ice cubes on the bottoms of her feet! And they got nothing…
The hospice on-call nurse arrived late yesterday evening and after not being able to even detect a blood pressure reading he declared, “it is time”… I get this tidbit around 9pm last night- and that just sends me into overdrive. I go on a packing and preparing frenzy- wash clothes, iron shirts, cook supper, clean kitchen, pack clothes, shoes, linens, landscaping tools, laptop, snacks and try to spend time with the dog in between. I finally crashed at midnight after all of above and having successfully called boot camp and work to tell them I would not be there this morning.
I did not sleep well at all and woke very tired. Showered and loaded up vehicle in record time and hit the road.
When I saw my Grandmother this morning (after only 5 days since my last visit) the difference in her physical appearance was most rattling again. She has bones jutting out all over her little body! Her eyes are wide open staring upward and her mouth is just gaping open and the loud sound of her breathing just makes me wonder if she is struggling to get enough air. Both ladies that care for her are with me and I grab her hands and call out to her, “Memaw! Memaw it is me, Kelly!” and her eyebrows actually raise up! And both hands quickly squeeze mine just for a second. Both caregivers are in shock… I keep calling out to her and talking to her and she only responds sporadically with eyebrow movements and quick hand movements. It is almost like her mouth and eyes are paralyzed or something. I went by several times today to see her in between all of the yard work projects my brother, Hubby and I worked on at her house all day. I pretty much got the same responses all day- but, by this evening she seemed to try to say something but her mouth would not do anything more than stay gaped open. I talked to her over and over and assured her that everything was okay. Of course, I know that without food or water she will not last long. But, any ability to eat or drink is now gone. The lines of communication are gone. The capability of functioning on any level is gone. And soon she will be gone… My heart is filled with sadness this day.

Stuck In A Rut

I am deeply saddened today after spending quite a bit of time with my Grandmother last week while we were back home working on our land. Her mind is stuck on the same subject as it has been for the last few months- she spends who knows how long each and every day trying to figure out "how to get out of here"... every time I visit her she babbles and rambles on and on about "going somewhere else" and how "she can't take it anymore"... I cannot understand 90% of what she babbles but, the 10% that I can decipher comes down to her wanting to go elsewhere. I tell her that the only other option at this point is the nursing home and she then threatens that "I (she) am going to find me another place to go live"... I ask her why and what the problem is and get nothing in response. Again, she is stuck in this mindset and I do not know why I even try to reason with dementia.
My Mom and I took her to Callaway Saturday and she kept babbling the entire time about the same thing over and over and over. I fussed at her several times trying to get her off the subject and try to get her to enjoy the pretty scenery- to no avail. She is just plain ol' bitter and angry. It is sucks! When we "walked" her to the car that morning to head to Callaway, it took us over 10 minute to get her from the kitchen to seated in the car. And then as soon as I crank up the car, she starts steadily rattling on about how she can move home and take care of herself.... and I am steadily asking her how she can take care of herself with a broke hip.. who will cook and clean and wash clothes and drive her to her appointments ... and she just dodges my questions.. and then starts up again with the rambling. I called her yesterday and had the exact same conversation AGAIN only this time I could not get her off the phone. She just goes on and on and on about the same gripes... it makes me want to stop calling her... I just do not know how much I can take of the same conversations over and over with her. What's a girl to do?

Hop On the Dementia Rollercoaster!

I found out on Friday that the rehabilitation center has projected my Grandmother’s release date to be this Thursday, March 26- a little surprising to say the least! And because I could not make the drive down to visit her at all last week, I had at least one visitor per day planned out up through yesterday. Since my mom and brother were coming up to visit us in Marietta this past weekend, I had to schedule my dad twice- on Saturday and Sunday just to make sure someone went to see her over the weekend. Of course her caregiver goes to see her just about everyday- but, my Grandmother does not seem to really remember her after this whole broken hip ordeal. Everyone who went and visited her over the course of last week had pretty positive feedback about his or her visit… well almost everyone- except my dad. His reports are always just the opposite. I am really beginning to think it is just him. You see even after dealing with my Grandmother’s sickness for over two years my dad is still in denial- in denial of her dementia, in denial of her disabilities, in denial of her aging, the list goes on and on. So he doesn’t understand why she does the things she does and why she does not do the things she used to could do. His behavior is so typical of family members (usually men) who just cannot or will not accept changes in their loved ones. Changes that cannot be prevented or helped… yet, they just do not get it! Come on people, the information is out there to read up on it…why not just take the time to research it so you can understand her and her condition! For example, I called him on Sunday to see how his visit went on Saturday… he tells me that she was “pitching a fit and struggling to get out of the wheelchair the entire time I was there”. He says that she stays angry and combative… I called him on Sunday night to see how his visit was earlier that day- same story just a different day. So later that night I decided to make the trip myself on Monday afternoon.
I came into work early so I could leave a little early yesterday afternoon… luck was on my side because I managed to avoid any/all traffic the entire way down there… got there by 5:30. My mom called on the way and said she wanted to meet me there to visit her too. So we entered the building together and found her in the wheelchair sitting out in the common area in front of the nurse’s station. She was yelling out at some nurse walking by her at that moment, “hey! Hello! Hey! Hello!” while pulling on the Velcro wheelchair strap that keeps her from coming out of the chair… we stopped for a minute and just watched her… it kind of reminded me of one of those homeless people you see sitting on the side of the street hollering for a hand out all the while everyone walking by are just ignoring them. I slowly walked up and silently stood right in front of her path of vision…. She looks up at my face and slowly grins like she recognizes me… but, then the smile fades, her demeanor changes and she says, “where have you been?!”… Now that is exactly what I had expected from my always-agitated Grandmother…and nothing less. And then she says, “and where is your mom?” and mom pops up next to me and says, “right here!”…And now she is really surprised… she just looks back and forth at both of us… and then she busts out crying…I slowly interpret her sobs in that she is “so glad that we are all together again”… and then a minute later she has stopped crying and is babbling about something and we are both baffled at what she is saying… it seems that her ability to talk and understand her words is waning and she speaks in such a low tone that you can hardly hear her words. Well, we spent the next hour on this rollercoaster of happy, crying, surprise, happy, crying, over and over and over. And then around 6:15 her energy level just deflated and she was asleep in the chair by 6:30. We watched the nurse tech put her bed and then told her bye…. As I made the long drive back to the city, I watched the beautiful sunset on my left through the trees and thought for a long time about how different life is going to be for my Grandmother and her caregiver when she returns to Pine Mountain later this week. A broken hip and an increased level of dementia is going to make life very much more complicated… we shall see what happens…

Does The Drama Ever End?

Last week was such a tiresome yet eventful seven days for me… I was supposed to have been in El Paso from Monday morning to Wednesday evening. Well that did not happen thanks to the unexpected snowstorm that blew in on that Sunday, the day before. Cancelling the trip meant my missing our one safety lunch for the field crew- grilled T-bone steaks! We handed out t-shirts (designed by yours truly) and hooded company logo sweatshirts and gave away prizes. I really hated to miss the fun. But, on the positive side, I did get caught up with a bunch of paperwork that I did not finish before my “almost” trip. On top of the fact that I am so stressed right now trying to get ready for my big karate test in less than 2 weeks. I am going to the karate studio every day for any spare hour that I can… plus work, boot camp, etc.
And top of all that, my newest saga started on Wednesday afternoon…. Yes, around 1pm on Wednesday I started receiving all these phone calls and voice mails from one of the Nurses at the Hospice who we hired to do my Grandmother’s hospice-at-home care. This is a service that folks can qualify for when they get to a certain point in their aging life… they are an on-call nursing service 24/7 and they provide bathing services, etc. 3-5 times a week. Well I just signed the papers to hire them about a month ago. And it seems like I have gotten phone calls from them about once a week since then regarding some of the most idiotic issues. The biggest issue (keep in mind this is THEIR issue) that they have called on me about is the posey vest (a restraint vest) that my Grandmother sleeps in at night. First of all, her Doctor suggested it and prescribed it in order to keep her from falling/rolling/getting out of the bed at night and hurting herself. At a certain point in one’s journey with Dementia, the victim tends to wake up at night and not know where or who they are and will climb out of bed to “get away”… coupled with her severe Glaucoma and that can be a recipe for disaster! Well the hospice does not support the use of restraints (of any type) AT ALL. And they have tortured me since their discovering the vest… they have called numerous times raising all kinds of hell about it and demanding that I sign papers relieving them of any responsibility if she chokes herself to death on it… yadda yadda yadda... Well the phone call this past Wednesday topped all the others…. This nurse must have called me over 6 times while I was on the phone with the Caregiver asking what was going on and was my Grandmother okay. As it turns out the Nurse was AT the house with my Grandmother and calling me from her car in the driveway! I finally answer the phone only to find out that the Nurse was calling to tell me that the Caregivers are beating my Grandmother… HUH? Not to delve every detail, but they did not see any bruises after I questioned about it. They did not see it actually happen. But, upon routine questioning my Grandmother told them that they hit her. Really? My Grandmother who is well into the stages of Dementia told you that she is being hit? Do you understand how Dementia works? And that she will tell you just about anything for attention? I was so pissed! And I think the Nurse was pissed that I did not get upset about the idea that my Grandmother “might” be getting beaten. I told her that I was coming down there that weekend and would assess the situation then. Obviously that was not a good enough answer because she asked what I was going to do with my Grandmother until Sunday… Uh, nothing? Leave her where she is? Can you believe they wanted to take her WITH them! Back to the hospice house! I told them NO. As her Legal Guardian and Power of Attorney- NO! So they informed me that they would be filing a report with Adult Protective services (that would be like DFACS for Seniors by the way)… of course, I asked “WHY?” And they said they had to since she told them about her getting beaten. After 5 minutes or so of going back and forth about how I do not agree with that decision and what a crock of crap this whole ordeal is, I hung up. They called me back only after they confronted the Caregiver with their accusations and she then her kicking them out of her house. Needless to say, I called our Doctor and got a referral that afternoon for the other hospice in Columbus. I was set up with their program and services by the next morning. Fortunately, they did a transfer from the “bad” hospice so we would not have to deal with them any more.
And of course, the Caregiver is devastated. She just cannot understand how this transpired. Or why. I keep telling her that we know the truth and we are on her side 100%.
Oh and the APS lady showed up on Saturday morning unannounced… she checked out the house, the Caregiver and my Grandmother… she just kept asking “please tell me why I am here again?”… Imagine that!
I met the new hospice service Nurse on Sunday and completed the paperwork. I then spent the day with my Grandmother, took her to my Mom’s for lunch and asked her about her statements earlier in the week that stirred up so much drama. Her answers changed every 5 minutes… again, imagine that… damn dementia!

A Day In The Slow Lane

I spent all day yesterday with my Grandmother. After I arrived, I spent my first 20-30 minutes waiting on her to use the bathroom. Every time she finished going, they would dress her back up and bring her into the room with me and then a few minutes later she would say she has to go again. This happened three times in a row! I told her that she better get it all out because there would be no bathroom in my car. Finally, she quit talking about having to go and we walked her out to the car. We spent a couple of hours just riding around my hometown... I ran some errands and she stayed in the car. I took her to visit her house. I helped her out of the car and helped her walk up and down the driveway a few times while she admired the yard and house. We visited our land and admired the horses at the neighboring farm. I got her back to her home just in time for lunch. We then left with the Caregiver to go to her doctors appointment in Lagrange. We made it to the doc's office and let's just say this was one eventful visit. First of all, the doc spotted us parading down the hallway on our way in to see him and he starting saying that we should really have a wheelchair on hand at all times- at home and away (this is based on his just watching us help her along I guess). And after walking thru all the events that have happened to her since our last visit- starting w/ the fall she had on Thanksgiving night, he pretty much stated that she is progressing downward. He is recommending two units of Ensure a day due to her weight loss (she is down to 85 lbs). He wants her to be sleeping in a "posey" (a restraint vest) at night to keep her from unconsiously climbing out of the bed in the middle of the night. After hearing about the details, he agreed with my theory that her "episode" on Saturday was more than likely another brain seizure- he wants to up her dosage of her seizure meds if she another significant one. If she continues to stay angry and combative on a daily basis, then we should be given the prescribed "calmative" med every day. The list goes on and on... and yet, he never came right out and just simply said "she is going downhill".... of course not! That would be WAY too easy! And with every question the Caregiver asked, my Grandmother would get angrier. By the time we left, she was fit to be tied! She did manage to lighten by the time we got to walmart... this trip to wally-world was quite different than any before- she did not recognize the store and she did not ramble on about needing "things" and "stuff"... she did not ask for ANY thing! We were in and out with no hold-ups... very strange... and her walking speed is drastically slower than the usual too. I am amazed at how hard it is to walk as slow as she does... makes my legs more than trying to run fast! We made it back to her home and I left her to head home by 5pm... and she was still happy-sounding when I talked to her this afternoon. Lord, I feel much better!

The Crossroads Along Dementia Lane

I am at a crossroads this week. And I think I know which way to turn, but I keep questioning myself. Besides being terribly busy between work, travel, boot camp, karate, Christmas, my Grandmother and my upcoming surgery (oh, did I mention that I am going into surgery the Monday after Christmas?), I am facing a huge, huge decision regarding my Grandmother. And this decision will turn the tables completely around in our dance with dementia. I am looking at an opportunity that is so big for her that it will change her world in epic proportions- but in a really great way. Here is how it all started:
Last Sunday night I received a phone call from one of her dearest friends from back home. She told me about how another lady in the Church had approached her regarding a caregiver in our hometown that cared for elderly folks with dementia. She gave me a brief description and a phone number. I did not really think too much about it right then. A couple of days later (after more reports from the sitter about my Grandmother’s bizarre behavior) I started pondering the thought of calling the other lady from the Church. After talking with my Mom, she called her first and got the information. Then, I called the lady from the Church myself and asked my own questions. It felt right to call the Caregiver lady myself by then. I made the call last Wednesday after I arrived home from my work trip to El Paso. We talked for over an hour! She had an answer to every question or scenario I threw at her! She has spent the last 8 years caring a for a doctor and his wife there in my hometown- the husband past after the first 5 years and then the wife 3 years later. The wife was bed-ridden the entire last year of her life and never had a bed sore the entire time! This Caregiver has experience in caring for even the worse conditions… immobility, dementia, incontinence; you name it- she knows how to take care of it. She has all of the medical equipment in her home to help care for my Grandmother, as she needs them: hospital bed with rails, walkers, wheelchairs, etc. She was a hairdresser in her previous life- so that takes care of her hair! She will cook her favorite foods, dress her, bathe her, deal with her incontinence, take her out for walks, read to her, play her favorite music, help her answer the phone when we call, let us come visit any time, the whole 900 yards!
Today I called the son of the couple she cared for mentioned above, he told me that if was lucky enough to find this lady and get to use her care giving services, I would be the second luckiest person in the world next to him being the first. I think that statement says it ALL.
There are so many things to do in order for this transition to happen and I am frantically trying to work them over the course of the next few days. I am out of town for work again Monday to Wednesday- El Paso again. A trip to my hometown after my trip to meet this Caregiver in person seems to be the next step. And then on to tell my Grandmother will be the next step. I have a rough draft mapped out of the way it will have to have happen considering my travel schedule, Christmas and my surgery. But, we have to move quickly because it looks like the sitter I am paying to stay with her night where she lives now is going to be a permanent fixture after my Grandmother’s episode by herself one night last night. I will not expose the details but believe me- it was a filthy scene. One that could be avoided if she had that 1 on 1 care that a Caregiver can provide- like the lady I am pondering.
I will have to give notice to the place where she lives now too. I just hope that does not turn into a big ordeal based on the big deal they made over the whole sitter-hiring episode. That was all their little cup of tea anyway.
I think I have a plan. I am pretty sure I have a plan that will work. And that will work for the best… the best for my Grandmother and the best for her family. I cannot think of a better Christmas gift to give her- the gift of moving home. She will be at home in her home town, just a block from her Church, just down the road from her friends, just a few miles from her family… I just pray she grasps this opportunity with open arms. This is my prayer for this Christmas holiday season. Won’t you join me?

Around The World In 15 Minutes

We decided to use all four days off work over the Thanksgiving holiday to go to my hometown and celebrate the holiday w/ my family, do some serious deer hunting, and spend some time one of the four days spring cleaning my Grandmother’s house. That was the plan. Or should I say at least that WAS the plan. It sounded so good when we talked about it before we left for the holiday.
I picked up my Grandmother at her apartment on my way down there since Hubby and I took separate vehicles. Just like the last time, she was far from ready to go. As a matter of fact, I found her standing in an inch or so of water in her bathroom with the top of her pants down around her thighs. She was trying to rinse out a very dirty washcloth and had some how over flowed the sink resulting in the mini-flood. After some investigation, I found wads of toilet paper stuck all around the drain in the sink and that seem to be clogging the water from going downward. After 5 or so minutes of mopping I had most of the water gone and then wound up wiping down the toilet, sink and cabinet in the meantime… the mysterious brown splotches all over the bathroom were back even after I wiped them up just a couple of weeks ago.
I then discovered another huge wet spot in the middle of her bedroom floor in front of the dresser… only a couple of inches from the last one I found… and it was wet and again smelling like urine. I was baffled over this one… she has no idea about it when asked… I manage to inspect her person… she once again needs her garments changed and clean clothes. I clean her up and start looking for her “missing” underwear. (The staff informed me on my way in that she needed more underwear since hers were all missing). I start looking through all her drawers in the cabinet… none to be found. And then I opened her cedar chest… she must have crammed every stitch of clothing in that chest that was not hanging in the closet! I am sniffing every piece of clothing I pull out of there and putting anything that looked or smelled remotely dirty into a pile and hanging up the rest in the closet. I must have found 10 pair of soiled underwear just crammed into the bottom up under everything else! It was awful. She must have been hiding them every time she messed on herself. I wound up with a big bag of laundry to wash today, get her dressed, and take off for turkey dinner at my Mom’s.
This day with my Grandmother proved to be a multitude of “trips around the world in 15 minutes” as I call them. Why do you ask? Because her mind was ALL over the place! She asked me several times before we even got to my Mom’s if I had any children. Huh?
The thing is that she tends to nod off to sleep almost every time she is sitting down and has not conversed with someone or is not moving around… and then she dozes off…and when she wake up… Bam! Her brain starts all over again… one time she jumped up and exclaimed, “This is not my house! Who are you?” to me and my Mom… Another time she was sitting in the recliner dozing and then all of a sudden she just starts crying out loud as if on cue…when I ask her what is wrong she starts rambling on about how I won’t buy her any thing or how she never gets to go any where. A few minutes later and she is back dozing and we start all over again. She asked several times about “where is that little girl?”… and we have NO clue as to who she is talking about! You ask who she is looking for and she gets angry so fast…it was such a long, burdening day for me that guiltily I just had to get her out of there towards mid-afternoon. I felt so guilty to take her back to her apartment but the many trips around her brain (the world) just about killed us that day. On top of dealing with her mind, I also hand scrubbed ten pair of soiled underwear, one pair of pants and several socks… all before we even ate Thanksgiving dinner! She ate the entire meal with her fingers again… the fork is just not comprehendible to her anymore… she seems to mumble a lot more these days… so quietly though I find myself constantly saying to her, “Huh? What did you say?”… After twenty times of asking that throughout the day, I had had enough. I left her at her apartment with all clean laundry shortly before her suppertime.
Of course, the hot topic of the night once I returned to my Mom’s was her behavior. I bounced theories and ideas off my Mom… it is always the never-ending question, “What am I going to do?” And the answer is always out of my reach…
Hubby and I got up really early the next morning to go deer hunting. I was climbing a very high stand in the pitch dark around 6:30am… I, for one, am not a fan of walking through the woods in the dark at that time in the morning… especially in unfamiliar territory. Hubby made sure I got all the way up into the very tiny, very rickety, swivel one-seater stand. I had been in the stand about 30 minutes when the phone call came in… just as dark was turning to light… that moment at dawn when the woods are really quiet… and then the buzzing of the cell phone broke the silence… the caller ID showed the assisted living center’s main number…I am thinking, “are you kidding me?”… I answer very, very quiet, “hello” and a voice on the other end tells me that my Grandmother has fallen and they think she has broken her arm… “Seriously?”… Yes, we think she needs to go to the ER…. Needless to say, I was stranded on someone’s land with no vehicle and there was no way I could get there quick enough to escort her to the ER… so I calledd my Mom, woke her up and asked her to go check it out….
Well to make a long story short, I met them at the ER just after the X-rays were taken and the Doctor tells us that she has broken her shoulder. She, of course, has no clue and does not remember that she is in pain until she moves the arm a certain way. They send us away with a sling and pain meds… and orders to call and set up an appointment with the Orthopedic Doctor the following week. We get back to the apartment and I realize that she cannot be by herself since she now has one arm only. I wound up hiring one of the ladies that works there to sit with her at night to help her dress, undress, bathe, go to the bathroom, eat, etc. In the meantime, we have managed to successfully move her into adult “pull-ups” to help with her “potty issues”… so far this has been the only thing that has worked out since that day. The sitter has discovered that the wet spots on the floor in the bedroom are from her urinating in front of the dresser in the middle of the night instead of the bathroom. She wakes up, gets out of bed, walks over to the dresser, squats and pees… isn’t that something? How do you teach an old dog a new trick? Like how to use the pull-ups instead for crying out loud! I am baffled more and more with every passing day.
On Monday, the new director of the assisted living center confronts me about hiring a sitter without using their in-house program (which would cost us double the hourly rate by the way)… I tell her it was a 4-day holiday and they would not be back for 3 days and I needed a sitter THEN. She tells me that the Owner is upset and that the sitter will have to be reprimanded… I politely reiterate my case again. After several rounds of this, she finally agrees to turn their head this time… but, no more after this one time. I am again baffled… I already have enough on me with the shoulder and incontinence issues- please just throw another burden onto me!
Then, I found out that my Grandmother’s sister has called my Mother and informed her that she will no longer be able to take her to get her weekly hair appointments since the beautician will not work on her with a broken shoulder… Huh? Turns out that her sister was just using this as an excuse to get out of her commitment to my Grandmother… Great, another issue to deal with! Another ball of fire! I call on my Father to see if he will help with getting her to the hair appointments… he steps up to the plate. The balls of fire and torture keep flying at me and keep dodging them…
I take a half day off the following Thursday to take her to the Ortho Doctor… he tells us that her shoulder is not broken after all! Relief all around…just bruised and lots of arthritis…
I pay the sitter that afternoon… whew, not a light fee… but, worth her safety…. To this day the sitter is still there… have not decided when to stop having her there as a safety net… the fear of her falling again or peeing a river in her bedroom frightens me daily into keeping the sitter… again, what AM I going to do?

Why?

I am kind of between a rock and hard place tonight. I had a conversation with my Grandmother’s sister this evening in which she informed me that the new Director at the assisted living center (where my Grandmother resides) has approached her wanting to discuss my Grandmother’s current condition. So I made a phone call to one of the assistant managers (I know her from my childhood) to find out what was going on before I call the new Director tomorrow. (Of course, I think that if the new Director has an issue to discuss about my Grandmother, she should call ME.) I talked to my “friend” for over 30 minutes about my Grandmother and to sum it up, she seems to think she has really gone downhill a LOT the past few weeks. I felt like I was defending my Grandmother’s mental and physical capacity the ENTIRE conversation! I agree that her ability to put together words into a sentence has been a real challenge recently. And I agree that she can be confused pretty often. But, she is still HERE mentally. She still knows who she is and who I am. She cannot call out names but she recognizes family and friends that are in her life often. She droned on and on about how my Grandmother keeps forgetting how to go the bathroom, how she can hardly feed herself anymore, how she misses the chair every time she goes to sit down, etc. I was practically fighting tears by the end of our conversation especially after she said, “Kelly, you are in a tough, tough position and I cannot tell you what to do about her”. Really? Because I do not know what to do about her either! How does any body know what to do with their 80 year old Grandmother with Stage 2-3 dementia and glaucoma so severe that she is almost legally blind? She does not bother the other residents, she just tears up her own stuff in her own apartment and then forgets that she did it… and then tries to blame “those people” that came in there and did it! This is nothing new for me… she started this over 2 years ago! And now they want to move her to the “other side” of the place where the severe Alzheimer’s folks are and that would just KILL her… I cannot even imagine the consequences I would endure from her if they make us move her over there. She hates that side because she feels like a prisoner behind locked doors. The really severe residents on that side sleep all day in the TV room and drool on themselves. They have no clue who they are and where they are. I spent several days with her on that side when we first moved her in almost two years and it scared the crap out of me! I talked with one of the floor ladies tonight and she was telling me the same stuff as the first one! She thinks that my Grandmother would get more care and more of the attention she needs over there… I am at a loss at this point. I now have the black cloud of more burdens on me and I do not know what in the world to do. I keep asking Why? And the answers never come… Will there ever be peace in the world dementia? Probably not.

More Challenges With Dementia

For some reason my Grandmother has not been having a very good week this week and I for the life of me do not know how to help her. Her level of confusion seems to be at a really high level, therefore, she keeps doing crazy things that she would not normally do... For instance, my Mom spent the day with her yesterday. She took her to the dentist and when asked about her pains she would answer regarding her feet. The whole disassociation issue is another troublesome part of her life too- the disassociation coupled with her severe case of glaucoma is a recipe for diaster! Her limited vocabulary does not help matters either. Basically, she cannot see, she cannot talk well and she mixes up everything! In one conversation she will stammer through an explanation trying to tell you that her stomach hurts and later on you find out (only by seeing it with your own eyes) that she actually has a form of diaper rash! Her losing her shoes might actually mean that she cannot find the cordless phone... and so on... and her limited vocabulary makes conversation with her so darn challenging! I like to refer to it as "Memaw ebonics"... I have actually gotten pretty good about deciphering what she is trying to say over these past few months but, she gets so frustrated and lashes out about her inability to put a sentence together and I just keep playing the neverending guessing game until I finally figure out what she is talking about. Last night was a really bad night for her... I was on the phone with the assisted living staff several times before I went to bed being enlightened as to how she has destroyed her apartment and how everything is all over the floor and furniture. She supposedly keeps looking for something, but when asked what she is looking for, she does not know. I guess all I can do is pray that she gets through this current "cycle"... and moves on to the next one...

You Just Gotta Love Old Folks

My Grandmother had an early eye appointment this morning, so I cut my weekend with Hubby short to make the drive down to her place yesterday afternoon. As I predicted she was ecstatic that I came down to spend the night with her… she was so was excited that I think she worked herself into almost a slight state of confusion. At least more confused than her normal level of daily confusion. Taking her to supper at the cracker barrel was not too bad but, the simple act of walking to, through and from the restaurant proved to be a task. You see she has this mental block about walking in unfamiliar territory. She just automatically assumes that the surface is uneven; therefore, she keeps tripping over invisible obstacles and walking in little baby steps in a really, really slow pace. I feel like I am practically dragging her around the parking lot! Of course, assuring her all along that I will not let her fall… After the ordeal of getting her in the place and seated, she ate everything on her plate and did not even make too big of a mess! She would have licked the remaining honey mustard off her plate if I had let her! I just kept thinking back to when I was a child and she was the adult and how she used to fuss at me for my manners… boy, have times changed! Although, I do not fuss at her… as a matter of fact, I welcome her using her fingers to pick up her food to eat it… since her use of utensils is practically gone… anything to help her eat more food.
When, we made it back to her apartment, I opened up my nail salon and went to work on her finger and toe nails… I will not even go there on trying to describe what that awful experience was like…
And then I discovered the bathroom… after a wild goose chase for cleaning products, I spent the next hour mopping her bathroom floor three times and cleaning the toilet, sink and all other horizontal surfaces in there.
Next, I spent over an hour trying to get her to change into her pajamas… she just could not pull it together mentally to complete the task. I finally wound up helping her…
All night was spent either burning up or freezing to death in her apartment… it was awful. I do not think I ever fell into a deep sleep the entire night. I kept getting up to turn the AC on… and then she would wake up and start asking me what was wrong… I finally tried to just sleep on the couch next to the AC unit… and then froze! Needless to say, I was very ready to rise when the waking hour happened upon us.
After a trip to the eye doctor that included a 2-hour wait in the waiting room, I was very ready to head back to the metropolis late this morning… but, not until after I overheard a conversation between two elderly ladies in the waiting room watching one of those cable news networks on the waiting room television. One lady said to the other (after watching a report titled “Palin is the newest TV star”, “She isn’t no TV star, she is a god-fearing normal person with good values and good judgment who just wants to represent the rest of good folks”. Amen, sister. You just gotta love old folks…

Is My World Just Full of Idiots?

The absurdity of some people's idiocy just never ceases to amaze me... especially when they are family members. On our long trip back from Savannah on Sunday afternoon (around 1pm-ish) I received a voicemail from one of my Grandmother’s sisters (she only has 3 siblings left- 1 brother, 2 sisters). Her message informed me that her other sister had died…. On Friday! Oh, and the funeral is today. Yes, you read it right! My Grandmother’s sister died two days earlier and her funeral was in two hours after the phone call was made to us to let us know???!!!! Are you kidding me? I could feel the anger creeping up the back of my neck and my ears. I tried to contain myself as I called her back…. I calmingly asked why they did not notify us on Friday so we might an opportunity to attend the service. Her response was that she figured I would not drive “all the way down here from Atlanta” for her funeral… Wrong answer! Maybe my Father would have liked to go… or maybe he would have taken my Grandmother… maybe, maybe, maybe… Lady, you might be her sister, but you are an idiot in my book! Maybe you should not make assumptions! And now we have to consider the biggest task of all… WHO is going to tell my Grandmother about her death? And how she missed the service?? Of course, I asked her sister about it and miraculously enough- she agreed to tell her… only she would tell her some time later this week. Well, guess what? The cat is outta the bag as of last night! Someone from back in our hometown must have read the obituary and called my Grandmother to tell her that her sister died! How awful is that? To find out that your sibling died FROM SOMEONE WHO READ IT IN THE NEWSPAPER???? I could have died! She just kept asking me over and over why her other sister did not tell her… and why she didn’t know how badly off she was… it was awful! I called her sister and let her know what had transpired… and do you know what her response was? “Why would someone call her and tell her knowing what her mental condition is?” I just about fell out of my chair! I asked her what that was supposed to mean… she explained that she did not think my Grandmother would even remember who her sister was…Now I am really getting ticked… I tell her that of course she knows WHO she is! She might not call her name out but she ABSOLUTELY knows that she is her sister! Again, the idiocy of people just KILLS me! Why do people just automatically assume that a person with dementia is so mentally incapacitated that they do not “know” any body any more?? Don’t discount her already! She has not gone over “to the other side” yet! I struggle with this every day. If some family members would spend a little more time with her, you will see that she is still herself… you just have to be patient and LISTEN to her words and actions… granted it is a limited vocabulary… but, it is decipherable… am I the only person that understands her? Am I the only person that understands her disease? Please dear Lord, help me.

Alzheimer's vs. Cancer 2

I wrote a blog back in late February titled Alzheimer’s vs. Cancer. This blog represented a subject that is very near and dear to my heart and I put a lot of effort into composing it. I got a LOT of feedback on the blog at my “other” blog-posting site. I did not get one single comment on this blog site when I posted… until this week. Someone “Anonymous” left me a comment this week on a blog post that was over a month old… they signed the comment “Mary-Anne”… now I do not mind folks I do not know commenting on this blog… the reason I am writing about this comment in particular though is to share with you the interesting link she added to her comment. This article “Alzheimer’s or Cancer: Which Disease Would You Rather Die From?” came out almost 3 weeks after my blog post… interesting article to say the least… I think this is such an interesting topic that could be discussed at so many different levels and in so many different angles. I still support my position and so does the writer of this article. Go check it out for yourself!
In the meantime, I keep seeing more and more commercials on the TV these days for Alzheimer’s medicines… mostly Aricept. I also keep seeing more articles in the AJC/local newspapers too about “dealing with aging parents and their dementia”… I am telling you- it is a HUGE sign of what is about to come in the future… Be Prepared I tell you! It is going to be a plague and I just hope that everyone is ready for it… if they do not put more money and effort into the research of this disease, we are all headed down a very scary and painful road… Soon enough... I guarantee it.

Always Appreciate the Simple Things

In all the time that I have spent with my grandmother these past two weeks I have learned so many new things just by simply watching her… witnessing her actions… listening to her words… and storing all of these memories and ideas into my mind for future reference…. After the Neurologist told me on Wednesday that her brain function has slowed down drastically to a Level 5 (versus a Levels 9-12 for normal brain function), I realized that this “slowing” explained a LOT of why she is doing was she does now. At first, it made me really sad and sorrowful for her and I would wish that I could make it all better for her. But, the truth is there is no going back now… there is no way to reverse the effects of brain shrinkage, slowing, or damage…. It only gets worse as time goes on… So instead I dwelled on the simple everyday things that she no longer remembers any more… the day-to-day activities that we do each and every day without a thought in the world about them… how we just “do” them and never, ever think about “doing” them… Or how no one ever thinks about “what if” I could not “do” these things for myself any more again? Well, that is what she is up against now… now that she is back in her home and out of the hospital and trying to get her life back to the routine she was in before she left for the ER on March 1… Yet, she is home and there are still these daily activities that are so precious to you and me but to her she has now forgotten how to do them.
A few examples that she has lost the ability to do: Button or unbutton clothes, tie her shoe laces, use dining utensils, wipe, dial, answer or hang up phone, make a bed, fold clothes, operate a sink, flush a toilet, read a clock, read or write, use a zipper, forget where your pockets are, put toothpaste on toothbrush, etc.
As normal brain functioning humans, you and I do these simple activities day-in and day-out and never once stop and think about how fortunate we are to be able to perform these tasks with no problem whatsoever. Yet, for her the function to remember to do it is gone and the function to know how to do is gone as well. It breaks my heart each time she would get ready to do a simple task as going to the bathroom and would be sitting on the toilet and would ask me what to do next once she finished “going” in the bowl. You see the brain current that tells her to wipe next is simply not there anymore. And then sometimes she won’t remember to pull up her underwear before her pants or to flush the commode when she is finished or even where the commode handle is to flush the commode. Another example is that when she stands in front of the sink to wash her hands, she stares at the sink because she cannot remember how to turn the faucet on…. Sometimes in the middle of the night she will wake up having to go the bathroom and she just sits up in the bed and stares out into the night because she will not remember where the bathroom is… the list just goes on and on. I guess I never realized how bad she was even when the Neurologist told me that she is now categorized as “Stage 3 Dementia”… I got a reality check of it though when I stayed with her in her home for 3 days this week. My grandmother is not the same person she was before she was hospitalized. I still do not know for sure what happened to her during her hospital stay from March 1 to March 12. All I do know is that she forgot all about her home, her stuff, every body but her immediate family (just 4 of us), etc. Those things that she was so uptight and passionate about before are not even a faint memory to her now… she has not even asked about her jewelry, her house, her bills, nothing. In a way, her situation frightens me to some degree but in other ways it is somewhat calming to me. This past two weeks have in a way molded me into understanding that she is alright now and when her time comes it will be alright too.