I could probably post all the time, because you all understand the journey. I try not to over post here, but I wanted to share this with you all. I have a private Facebook group page for my Mom's family & friends, so I can keep everyone updated on her health, and ultimately educate them (or try) on this despicable disease that has taken residence in my sweet Momma's brain.
We have self quarantined since first week of March, and have ventured out only for necessary essential reasons, in addition to going to and from the lake house for a change of scenery.
Yesterday I had to take Mom to get an eye exam, because she absolutely had to get some new glasses! I was so nervous about this appointment, because I didn't know how she was going to verbalize her responses during the exam --- we practiced hand signals, reading letters from a distance -- it takes time for her to say the letters ---- I am not telling you anything you don't already know. Anyway, standing ovation to the most patient Ophthalmologist and his ability to allow mom to feel successful. Tears flowing let me tell you! Im celebrating!
FACEBOOK Private Group Post:
We take for granted the simple things in life. We really really do. We have waited patiently with quarantine to manage any necessary appointments, most cancelled and rescheduled, except for her eyes. Bless her heart - this dang disease has really wreaked havoc on her eyes, not to mention managing diabetes and keeping her numbers under control.
I have had to actually call and speak to the Doc and his team about their protocol - just call me Madea. But - it is so important!
Have you ever considered what it takes to go thru an entire eye exam and not have the ability to speak, or the energy to push the volume enough to be heard — with a MASK ON? Bless her heart — this zapped every ounce of energy to achieve success in this appointment ... BUT SHE DID IT!
I sat there feeling like I was with one of my kids when they were young ... willing them to succeed. Tears in my eyes as she whispered the letters on the screen, and fist pumping behind the doctor as she navigated her way.
I have worried for days about this appointment, praying we could get it done!
New prescription and new glasses on the way!
We went home and she went straight to bed.
Be incredibly grateful for the little things in life that you can still do ... like talk beyond a whisper. My sweet Momma doesn’t deserve this, but she amazes me with her gladiator spirit!
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bazooka111
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Well done Kim. I do know this journey so well, as hubby had CBD and the loss of communication was the hardest thing on him - harder even then the loss of mobility. As a spouse it truly gave meaning to that dictum “seek to understand”!
I always so deeply appreciated health professionals who took a little time and extra patience to respect the struggle he went through to communicate ❤️
I absolutely contribute all my thanks to this gentleman that was so professional and took the time to calm my moms quiet anxiety, knowing her limitations —- she is so aware - it’s a double edged sword. She’s my gladiator!
100 percent get it why you came away from that appointment with your momma feeling so triumphant.
I had so many appointments at the eye hospital with Rod and for each one of them I remember psyching myself up for how difficult it would be for him and how darned upset it would make me. I won’t go on too much about those appointments, all of which were equally difficult, but I remember so well how he couldn’t follow instruction so when asked to read the next line down, because he struggled to process what was being said, he would read the top line again, and so on and so on. However, his one triumph was always the magic eye pictures, when he could pick up the hidden picture in an instant and he was always so thrilled that he could do that (I struggle with those). I always left the hospital with my heart breaking for him but I smile now reading your post and remembering how thrilled he was that he’d at least got one thing right. He was always exhausted when we got home. For most of us an eye exam is a walk in the park but not for folk with neurological challenges - and you are so right about not taking for granted the simple things. The one thing that Rod’s illness taught me was to cherish even the smallest things because I have first-hand knowledge of how quickly life as we knew it can be stripped away.
There is always someone on here who totally gets any given scenario so keep sharing your triumphs and your challenges - your uplifting posts are a tonic and when things are not going so good then we’re here to listen and support as well.
First, I ordered donuts for breakfast yesterday!!! Yummy!
Taking her to that appointment had my stomach in a twist for days, anticipating the challenge ... trying to imagine each step, and how we would navigate ... we did it, or rather she did it - bless her heart, it was a lot of work and that brain of hers was so tired.
It certainly is a steep mountain that we are climbing, and along the way, we have to stop and take in a deep breath .... but with that thought, I imagine people like you Hils ... at the top, encouraging us along the way, fist pumps and reminding us “to stay strong” ...
Some days I really don’t know what I would do without you guys .... no one else understands this mountain we climb.
It’s such a huge mountain to climb and only those who have done it or are on their way up can appreciate the challenges. We can’t change the outcome for our loved ones but we can clamber over as many rockfalls as that mountain throws at us and navigate the next slopes. When the going has been tough, order in the donuts (with sprinkles), in my case it was always chocolate, take a couple of deep breaths and it’s onwards and upwards. Be proud of the unconditional love you are giving your mum - your dad must be smiling.
Hugs to you on this Sunday Hils! It’s super early here (6am) .. was up at 4:30 am with some incontinence, and she’s lost some core muscle - getting her into a seated position is becoming a real challenge ... so IM AWAKE .... I see an afternoon nap on my horizon! Oh ... and chocolate is my first choice ALWAYS! Xo Kim
You are at the lake house so get out onto the verandah this afternoon and have a couple of hours snore time once you’ve got mom settled. Looking back I remember getting one thing mastered only for something else to follow. It’s relentless but somehow we keep treading water. Keep smiling my friend.
I love how you celebrate victory! I find myself congratulating my husband for anything I can think of. I cheer when he swallows his medicine, when he can stand up, when a spoonful of food makes it all of the way to his mouth. Oh how he loves it when I tell him what a great job he’s doing. His smile is as beautiful as your sweet momma’s!
Your momma looks so young in the photo with her mask on. I can’t believe the dark circles that I have under my own eyes. This disease is aging me as much as it is hubby!
Our last eye appointment was done over the phone. I video’d hubby following my finger to show the doc how hubby’s eyes move separately. One eye looks up while his other eye will move to the side. It was a bit nerve wracking the first time that I noticed this and that’s what the phone conversation was about. He was referred back to neurology with a diagnosis of Posterior Cortical Atrophy (visual center of the brain affecting vision). Nothing we can do about it 🤷♀️ A tad frustrating!
I am pleased for you and your mom being able to physically go to the appointment and that your mom did such a fabulous job! I love the bond that you two have and that you share your stories with us.
Yes, I am her cheerleader . Don’t imagine me in the outfit, that will ruin the moment 🤣😂
She struggles so much, and yet the little things deserves a high five!
As for my Moms youthful appearance - you are correct! I have more gray hair than my own mother! She has beautiful skin - she doesn’t look like she’s in her mid 70’s ....
Imas for physically going anywhere - I have to carefully choose those trips out — it’s so much work.
Thank goodness for these delivery services - donuts delivered to the door is heaven on earth!!!!
Thank you Sarah —- we all know the valleys exist, but I try to get through those with victory’s and savor those moments as long as I can ... it’s been a hard week, but there have been some giggle sessions ... oh how I’m going to miss those some days xx Kim
Thank you Maggie - as long as we have air in our lungs, I’m going to be grateful to face another day with my Momma —- it doesn’t come without work, but she’s here! Xx Kim
Well done. All these relatively simple tasks that become incredibly challenging.
We had a similar experience with our local optometrist. My mum couldn’t speak at all, but he worked his magic and got her sorted. So lovely when these professionals go out of their comfort zone to make the experience so much better x
Yes!!! I was worried that they would tell me that we couldn’t get a prescription without her ability to communicate clearly —- not to mention the dang mask! Feel so accomplished - so thankful - Kim
She is such an inspiration. I know from my own experiences just how exhausting any appointment can be. As this beast progresses, victories will be few and far between, celebrate each one. You can have your donut and eat it too, and while you're at it have some ice cream as well.
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