I spent a couple of hours at Eason House today, but mom slept through most of it. Apparently, she hadn’t slept at all last night, so she was beyond exhausted. Still, she was extremely restless. She could barely hold her eyes open, but couldn’t stay still for more than 10 minutes at a time. I hope she is able to get a good night’s sleep tonight.
Starting this blog has had me looking back at old writings, and I’m reminded of how this journey began and how it has progressed over the years. It makes me realize how many things I’ve blocked out, and going back to revisit those things in my mind can be almost more painful the second time around.
One of the biggest regrets I have is my lack of patience early on. I guess I just couldn’t wrap my head around what was happening, and I didn’t know how to deal with it or where to find the patience that I needed. As she slipped away, bit by bit, the logical part of me knew she couldn’t help what was happening, yet there was an emotional part of me that just wanted to shake her into listening better… paying attention… remembering what I’d told her to do – and not to do.
My lack of patience combined with her anger, depression, and defensiveness – ah, what a toxic combination. I wish I had understood more about what was happening. I wish I’d known then what I know now. I wish I could tell her how sorry I am that I wasn’t more patient and understanding during that time.
It’s pieces like the following one that are so painful to read now, but I hope by publishing them here, I can help someone else feel less alone. This journey is emotionally exhausting; you have to remain strong to deal with the day to day, and often strength is the last thing you’ll be feeling. Suddenly, you’re the parent, but who is this child? Sometimes, you’ll feel like you’re sinking in a quagmire of guilt. Just remember, you’re human, and at any given moment in time, you’re doing the very best you can.
If you’re going through this now, rest assured that the things you are feeling are a normal part of the journey. Consider contacting your local Alzheimer’s Association chapter to learn about their lectures and support groups. You don’t have to face this alone. Looking back, I realize it would have helped me immensely to know that these feelings were natural and perhaps with some guidance, I could have shown more patience.
I wrote this four years ago, almost to the day.
___________
February 17, 2008
If there was one thing I wish I had – I swear, it’s more patience.
I was laying here miserable with the heating pad on my neck – it was around 10:45 and I was just about ready to call it a night and go to bed. Phone rang. My mom. Not good at such a late hour.
I can hear that she’s upset the minute she speaks. She says her furnace isn’t working. I ask some questions, which get me absolutely nowhere, then tell her I’ll be over. Of course, it’s pouring rain. I head over there, the entire ride telling myself to be patient…be calm…relax. This is going to be a frustrating experience, get over it. All of that sort of self-talk.
But, I never have *enough* patience. I never do. She gets upset. I get upset. She said horrible things like, “I just want to die” and “You don’t like me anymore”. I just want to cry. Honest to god, if I started crying, I might never stop.
I try, I try so hard. It’s never enough, though.
Never.
The thing is, no matter what you tell her, she won’t listen. And, you can’t reason with her. Even if she agrees, she’ll forget 5 minutes later. She had called some fly-by-night furnace company a couple of weeks ago and had them out. She couldn’t tell me why she called them or where she got their name/phone number.
From what I could tell at the time, they charged her $179 to change the filter and two hours of labor for who knows what, plus a quote for $550 to do additional work. She had scheduled them to come back the following week, and argued when I suggested canceling it. I let it go, hell, it’s only money, right? You’ve got to pick your battles.
I assumed they came back, but tonight, she said they never showed up. I have no way of knowing for sure.
Anyway, when I got there, it was 71 degrees in the house, but she usually keeps it around 76. I cranked it up to 80 and sat there for about 30 minutes – the room temperature never changed. The unit is running, but obviously it isn’t heating to the requested temp. So, I called Atlas Butler – they’ve always provided service for both of us, and in fact, I’m pretty sure she has a service contract with them. There’s a sticker on the furnace indicating they were just there in October and completed a regular inspection. I’ll feel a lot better having *them* look at it. She assured me she’ll never call this other company again — but who knows. In one ear and out the other.
I hate that everything falls on me, but if it’s going to fall on me, I need to be able to handle *everything* — I need to know that she isn’t doing this or that on her own, because I can never get all of the information. I just get bits and pieces. It’s like a huge jigsaw puzzle with half the pieces missing. It just complicates things.
But, right now, there’s no way around it. She’s in the middle… somewhere in between independent and totally dependent. It’s frustrating as hell for both of us. I try to help and she resists, but she needs the help. She ends up getting mad or getting her feelings hurt. She cries. I lose my patience. I can’t cry – if I do, I can’t take care of things.
I have to stay strong and I find myself getting angry when she crumbles into a pile of “poor me” pity. Hell, *I* didn’t ask for this either. On the other hand, I realize that for the most part, she can’t control her emotions.
I just freaking HATE all of this. Hate.it.so.much.
I feel like the worst person on the face of the earth. At this moment, I’d like to crawl into a hole myself and never come out.
Not.an.option.
Atlas Butler will be out in the morning. It was warm enough that she is staying at the house (thankfully, it’s quite warm outside and will be for another day before it turns cold again). She has a space heater if she needs it, too, but seemed fine when I left. They’ll call me when they open to let me know what time they’re heading out, then I’ll call her and let her know.
I’d like to just take the day off work so I can be there when they come. (…But things are extremely tenuous in the office. I can’t call off…)
_____________________
Until next time…Carpe diem…
How it all began…
14 Tuesday Feb 2012
Posted in Old Blog Posts, Signs and Symptoms, The Early Years
One of my hopes for this space is that someone in the early stages of their Alzheimer’s journey will stumble upon a sentence or paragraph that brings them comfort or validates their feelings. Somehow there is a measure of peace in knowing that you aren’t the only one who has ever had to face this… others have come before you, and many will follow in your footsteps.
Thinking back to the beginning, everything was just so new, and nothing made sense. For us, these were uncharted waters… a very scary place to be, particularly with the person who had been my ROCK for as long as I could remember. Suddenly, I was thrust into control, making difficult decisions, and often being the “bad guy,” when, in fact, I had no idea what I was doing, let alone what was around the corner.
Those who knew my mom know that she was fiercely independent; a career woman who had worked her way up from a file clerk to a director level position for a Fortune 500 insurance company. She was a mentor to many and spent the latter part of her career traveling across the United States training some of the company’s best and brightest. She was always so proud to see her past proteges advance in their careers, and more than one of her underlings made their way to the company’s executive ranks.
I think one of her proudest moments was the surprise retirement party that was thrown for her one evening when she thought she was just going out to dinner. That night, the President of the company spoke at her celebration – and that is not something that typically occurs. That night was a testament to the difference she had made in so many lives and the appreciation her peers and superiors felt for her.
She also had a phenomenal sense of humor and people loved to be around her. When my mom was in the room, there were always lots of laughs and fun to be had by all. We made so many good memories, particularly after Jess was born. That child was, without a doubt, the light of her life.
So, when she began to show subtle signs of problems just a few years after retiring, it didn’t seem possible. Finally, in January of 2004, the changes we were seeing could no longer be denied. She had just retired six years earlier and had so many hopes and dreams for her “golden years.” She wanted to volunteer at Children’s Hospital and perhaps in the school system, and she looked so forward to traveling. But first, she wanted to just take some well deserved time off to relax and enjoy her new retiree status.
In hindsight, I wonder if she was beginning to realize something was wrong even before she retired, before we noticed anything was askew. She gradually became more and more withdrawn and we saw no great effort to follow through with her pre-retirement plans. Her days consisted of puttering around the house, doing some gardening, and having lunch or dinner with friends now and then. But as time wore on, she continued to withdraw and her activity level continued to decrease.
Even after she started having increasing difficulty finding her words and began misplacing things, I told myself it was normal signs of aging – or that she wasn’t keeping herself busy enough. It made me downright angry, because she didn’t seem to be doing anything to help herself. Now I realize that she couldn’t. It makes me incredibly sad to think she was trapped in her own mind, knowing something was wrong, but not saying anything to anyone. What a lonely, scary place to be.
All of the “normal” signs carried on through 2004 and 2005, and while she was showing obvious decline, I just don’t think we wanted to face reality. Conversations much later revealed that both Jess and I had been concerned for some time, but it was as though if we didn’t say it out loud, it wouldn’t be true.
And then, the winter of 2006 hit us like a ton of bricks. There were a couple of trips to the ER, followed by short stays in the hospital. She was having bouts of absolutely – for lack of better term – wacky, non-sensical behavior. She would call, extremely upset, talking in circles about things that were obviously only occurring in her head.
At one point, she was diagnosed with hyponatremia – a condition where the body’s sodium levels take a nose dive. We quickly learned that extremely low sodium can effect the mind in unusual ways. A few hours of IV fluids and the addition of Gatorade to her daily routine to balance electrolytes would typically solve the problem for awhile. There were also UTI’s – another big contributor to behavioral changes, and finally, an MRI revealed signs of TIA’s (mini strokes).
That year was pure hell. Every time my phone rang, I nearly jumped out of my skin wondering what would be next… Indeed, 2006 was when life really began to change for us. Oh, but little did we know what was in store…
Over the course of the past several years, I’ve recorded some thoughts and experiences on my personal blog. I was recently sifting through old posts, and they sure did bring back memories. For instance…
October 17, 2007
Just got home a short while ago from my mom’s doc appointment (and a grocery trip for her). Wow.
I’d made up my mind I wouldn’t cry. Remember, I said I was feeling strong?
I did fine until she was asked to write down a sentence (any sentence) and she wrote, “I love my daughter.” Ahh, close, but GO ME, I held it together, if just barely.
However, when she broke down and cried like a baby, saying she didn’t want to be a burden to me — I was done. Stick a fork in me – done. Poor Doc was getting choked up and I thought she was going to join us in our sea of tears. Thank God, I got ahold of myself in reasonably short order.
Without going into a lot of detail – mainly because I’m tired:
* She voluntarily gave up her car and will no longer be driving at all.
* She was given the dementia test again (I forget the formal name of it) and although the doc didn’t have the last results in front of her, she used a phrase along the lines of “more severe this time” when comparing the two tests.
* She’ll be going for a brain scan to see if she’s had another stroke and get a comparison to the scans taken almost 2 years ago. If she’s having TIA’s, they may or may not show up on the scan.
* She’s trying a new-to-her med, an anti-psychotic intended to stop the hallucinations. I’m praying we don’t have side affects here in the first few days. I’ll be on pins and needles when the phone rings for a week or so.
* She goes back to the doc in two weeks for a follow up.
After the appointment, we talked about things like transferring the house out of her name, getting the details on her long-term care policy, and setting up in-home visits by a caretaker, etc. Tough subjects, but it all has to be discussed and she took everything pretty well, all things considered. Of course, tomorrow, she’ll likely have forgotten it all.
God, I wouldn’t wish this on anyone…nobody should have to go through this.
Next on my list: I need to find a tax accountant I can trust and set up another appointment with my attorney once I have a plan of action.
And that is how it began. Life hasn’t been the same since.
Until next time…Carpe diem…
The Long and Winding Road... 