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.

What AM I Going To Do?

I made the long trip down to the assisted living center this past Saturday morning to spend the day with my Grandmother. When I got there the staff was setting up for the annual Thanksgiving dinner and I briefly met and spoke with the new Director- seems like a nice enough lady. When I met my Grandmother in the hallway she was carrying a few items in her hands and smelling slightly like poop… I knew instantly that this was going to be a long day. I asked her why she was carrying around in her hands the toothpaste tube, the sink drain plug, a bottle of lotion and her wallet…. She said that she had “found them” and she wanted to “show somebody”. I lead her back to the apartment… only to be greeted by more of the stench… I proceeded to put those few things back in their place and then started to look for the source of the “stench”… I really could not find anything in the bathroom or the bedroom- so it had to be her. I did find a huge wet spot on the carpet in front of her dresser- that turned out to be urine. I do not want to go into the gory details of my ugly day spent cleaning up my Grandmother and her apartment… and a frantic cleaning at that for 2 long hours before the noon Thanksgiving dinner! But, basically what it boils down to is that my Grandmother cannot seem to remember what to do after she uses the bathroom… hence, the stench. I am not sure how to explain the 24” diameter wet spot in the carpet unless she crouched there to pee thinking it was the toilet? Who knows… what I do know is that when I confronted her about the spot she tried to blame on those “other” people who come in here and use the bathroom… or “that man who runs down the hall” and takes her money and a whiz at the same time…? I just smiled and told her how much I loved her. And then I proceeded to ask her the touchy subject of her consistent “mishaps” with peeing or pooping… she just bawled. I explained to her that it was okay to do it… just call for help right when it happens so she won’t forget about it and leave it. Lord only knows if she will remember any thing I told her that day. As much as I scrubbed the carpet, the furniture, the bathroom, and her you would hope she would remember… but, again, probably not! And I even washed a load of dirty clothes too…
The turkey dinner was really good… and she proceeded to eat the entire meal with her fingers… I tried countless times to give her the fork and she would just stare at it as if she had no idea what it was for. But, she did eat the entire plate of food and dessert- with her fingers though…
After dinner, we did a little shopping at wal-mart as quickly as possible… she had a ball being out of the apartment but, she kept asking me about where we were… she could not remember the store or the town we were in…
I got her back to the apartment, put up her purchases, checked her wallet (which did not have all the money stolen as she informed several times earlier in the week), and said my goodbyes…Needless to say, I have a LOT to think about…

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.

I'll Take A Good Day Any Day

It has been over two weeks since I took my Grandmother to her tri-monthly visit to the neurologist…. Which means she has not been on any Alzheimer’s meds in over two weeks (Ref: Blog dated 8/15/08)… I am supposed to be watching her closely to see if she shows any signs of “notable” changes in her behavior patterns. Now I do not want to jinx any good juju in this dementia rollercoaster chapter of my life, but in this past week alone she has not mentioned a word regarding any stolen shoes or that “those people” have been coming into her apartment and messing up her stuff and/or stealing her “good things”. I am wondering if this could possibly be a good result of coming off those meds? Or could it be the fact that I take the painstaking challenge on every phone call with her to keep the subjects of discussion tailored around the weather, my work, bad traffic, exercising, food, immediate family members, or any other neutral topic that will keep her mind off the other? Who knows! All I know is that this week of phone calls with her have been WONDERFUL and those good calls really make my day! And a good day for me makes me smile!!! =~D

Another Day With Dementia

So I made the trip down to LaGrange earlier this week to take my Grandmother to the Neurologist. First off, the day did not start off well at all… I could not find my wallet before I left the house at the crack of dawn for boot camp… long story short I went to work and to LaGrange with no drivers license, no debit card, no credit card, nothing! I was NOT a happy camper! Fortunately, I had taken $40 out of the ATM the day before, but that only filled my gas tank up to a ½ of a tank! I had to borrow another $20 from a co-worker to get back…I worked almost a half-day and then made the long drive. She was waiting for me AT THE FRONT DOOR of the assisted living facility- seriously! Lord knows how long she had been standing there! I loaded her up in the truck and off we went to lunch. Lunch ran very smoothly to say the least. We took our time and she enjoyed a hamburger, fries and a strawberry sundae. We then drove over to the doctor’s office. She jammed the entire way there to her favorite- Sirius 65- the Bluegrass satellite radio station. She just loves that kind of music! I really enjoy watching her dancing and singing to the bluegrass and gospel they play on that station… it is really and truly the only time I get to see her so happy… She then tells she has to go to the restroom. So the first thing I do once we enter the office is take her to the restroom… she is automatically intimidated by the industrial-type toilet and accessories and asks me to stay with her (this is a small one-toilet restroom but handicap accessible). So I stay and wind up having to help her because the toilet was really high and she could not “find” the toilet paper, etc. And that is when I spotted the underwear. She had on a pair of underwear that was too big for my butt! They looked like a mini-skirt on her with the leg openings being WAY too big for her little chicken legs. I could not believe it! I ask her where the underwear came from… she thinks they are hers! Needless to say, the FIRST thing we did when we got back to her apt. was THROW them out! They even had her name marked in them! Unbelievable! Anyhoo, back to the Doctor… we go in for her appt. and she only weighs 90 lbs- something that I address with the Doctor- he said it is normal for her to not want to eat…he also said her taste for food is probably gone… and that is normal too! He keeps asking the same ol’ questions as the last 10 times we have gone in for “check-ups”. I tell him about her current daily habit of finding things “stolen” from her apartment and that this has been going on now for almost 2 weeks straight. He does not even bat an eyelash to that one. Must be normal too! Of course, she wants to know what I am talking about… I ask him about her meds. I tell him I want to do a trial and error on her Aricept. He is surprised! I keep talking about how I read several medical articles that all those Alzheimer’s meds might not really help. She has been on Aricept for almost 5 years and I truly believe that it has not helped her one bit. He finally agrees to take her off of it and see how she does until the next appt. I have to be honest that I have struggled mentally with this subject for a really long time. Take her off all her brain meds or not? Will it worsen her? Will it help? Who knows! All I know is that this medicine costs A LOT of money and she has only progressed downward in the last year and a half. She will stay on the seizure meds and go completely off the Alz meds. Am I a bad person for doing this? I think there is no stopping the inevitable at this point. Every day she gets worse- her vocabulary is VERY minimal. She usually forgets happenings or conversations from one day to the next. Her mind operates in cycles- this cycle is stolen stuff. Next cycle will be all the “bugs” in her room crawling on her, etc. The vicious side effects of dementia just never stop taking their toll on her… or me. I do not think there was one day in the past two weeks that I did not get upset with her on the phone after hearing the same story about her leaving her apt. for a meal and then coming back to her room only to find all of her shoes stolen again… How many times can the same 6 pair of shoes get stolen?

Dancing In The Rain

It will be obvious to most of you why this piece touched my heart so profoundly... an old friend of mine sent this to me in an email several weeks ago. It has been sitting in my Inbox since and almost everyday I see it there and re-read it because it truly does speak to my heart on many levels. Today, after reading it again, I decided to share it with you...
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Dancing in the Rain

It was a busy morning, about 8:30, when an elderly gentleman
in his 80's, arrived to have stitches removed from his thumb. He said he
was in a hurry as he had an appointment at 9:00 am.
I took his vital signs and had him take a seat, knowing it would be
over an hour before someone would to able to see him.
I saw him looking at his watch and decided, since I was not busy
with another patient, I would evaluate his wound.
On exam, it was well healed, so I talked to one of the doctors, got
the needed supplies to remove his sutures and redress his wound.
While taking care of his wound, I asked him if he had another
doctor's appointment this morning, as he was in such a hurry. The
gentleman told me no, that he needed to go to the nursing home to eat
breakfast with his wife.
I inquired as to her health. He told me that she had been there for
a while and that she was a victim of Alzheimer's disease. As we
talked, I asked if she would be upset if he was a bit late. He replied that
she no longer knew who he was, that she had not recognized him in five
years now.
I was surprised, and asked him, “And you still go every morning,
even though she doesn't know who you are?”
He smiled as he patted my hand and said, “She doesn't know me, but I
still know who she is...”.
I had to hold back tears as he left, I had goose bumps on my arm,
and thought, “That is the kind of love I want in my life.”

True love is neither physical, nor romantic. True love is an
acceptance of all that is, has been, will be, and will not be.
With all the jokes and fun that is in e-mails, sometimes there is
one that comes along that has an important message. This one I
thought I could share with you.
The happiest people don't necessarily have the best of everything;
they just make the best of everything they have.
I hope you share this with someone you care about. I just did.
“Life isn't about how to survive the storm, but how to dance in the
rain.”
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As I dab my eyes once again this morning, all I can say is "WOW" to this one... thanks, P!

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.