In full locked in syndrome, eyes too...:(

[mlkchung]

I've posted a few times before and wanted to give u all an update on my mom. She has no movement at all anywhere and is reliant on a ventilator around the clock and a feeding tube through her nose (we had complications with the stomach one). She's been diagnosed since 1999 as her symptoms around a year earlier then that.

It started from foot drop, to wheelchair (01), to arms (05), to losing weight (06), to jaw lock (07), to restlessness, to respiratory failure (08 ) , to her situation now.
Unfortunately things can and did get worse. She was able to move her eyes and her head a year after the trach, but now she can't move anything, she can even open her eyes.
Has anyone seen or heard if such an extreme case where u can't even open their eyes or move their eyeballs?
I miss her little blinks and signs that she used to give even if it was challenging to understand, but now I have nothing..... I still have her which I'm so so grateful for but I miss her at the same time.

I know her eyes are dry, so we put gel patches over them at night and give her some gel based drops recommended but the eye doctor that came to see her.

I just talk, kiss and hold her. We have two caretakers and my father there 24-7. But any advice where I can make her feel better? Anything!? We massage her, turn her every 1.5-3 hours... But what can I do for her emotionally?
Thanks for reading .... And would love any sharing of similar experiences, suggestions or ideas....

Love,
Margaret

 

[Joyce Arline]

Looks like you are doing it! Loving her into a peaceful journey toward release.

 

[pops66now]

Would like to say hello, and I am real sorry about your mother. I don't know of anyone in that condition, but I pray someone
on this forum can help.

 

[stephie]

I am so sorry that your Mom can't communicate with you anymore. It sounds like she has is getting great care. It must be reassuring for her to keep hearing your voice. I'm sure it doesn't matter what you talk to her about as long as she knows she is not alone. I can't even imagine being in your mom's place, but it might bring her some peace to hear you say the things she can't- that you know how much she loves you and your Dad and that you will take care of each other when she is gone. I will be thinking of you during this difficult time!

 

[joelc]

It is very rare for someone to loose eye control. I am so sorry for all of you but you sound like you are doing an amazing job of meeting her needs. Keep talking to her, normally, as you know her mind is still with her. I wish I could offer more, maybe someone smarter than me will respond!

God Bless you and may He give you strength and wisdom!

 

[laurel]

Dear Margaret,
I am saddened to read of your beloved mother's situation-- you sound like a very loving daughter. Trying to imagine myself in your mom's situation, I think mental stimulation would be desired to help pass the time and give a person something to think about other than the terrible situation that they are in. Perhaps you could find talking books on subjects that she expressed interest in when she could speak? And maybe rotating with playing some of her favourite music, and since she isn't blind putting a TV wall mounted that swivels within her range of vision so she could see it and put on some of her favourite shows. I think having an awareness of keeping the volume such that it isn't too loud for her as I imagine her hearing is quite acute under the circumstances. God bless you and your mom and dad.
Laurel

 

[Lavender Lady]

Loving her the way you are speaks volumes. It is a language she understands very well and appreciates i am sure. Bless your family, Rox

 

[KickALS]

Dear Margaret- The love and care you are giving your Mom is so wonderful and I am in tears knowing you and your Father are surrounding her with such love. This by far, is the most important thing you can do. My friend is in a similar situation and as she progressed to this point, we (she and I) discussed what she would like to do. While my friend has very slight movement in her eyes (left to right) this only occurs if we tape her eyes open. Have you ever tried this? If you hold her eye open is she able to move even one eye at all? When we first open her eye, it takes a bit until her eye adjusts before she can move it at all. We are constantly putting drops in her eyes as well and use gel drops with no preservatives as preservatives can burn. We also alternate each eye with wet compresses (cotton rounds) throughout the day to give each eye moisture. At night, we do the same with eye ointment and have to tape them closed.
If you have the ability to move her to a wheelchair, getting outdoors is always wonderful. Even if you can't go outside, I put things in her hands to feel (such as sand from a beach or baby powder). (I put a towel on her lap so nothing spills and then I hold her hands and put a handful of sand. Like an exfoliating massage. But I also use her hands to let the sand fall through each other for stimulation). Also a manicure and pedicure- and I soak her feet in a warm massaging foot bath and put her hands in a small vat of warm water.
Playing her favorite music, audio books and uplifting stories. Also talking about our favorite memories, reminding her of how much she has changed my life for the better, that by learning from her I have been able to help others and to tell her stories about others battling this disease as well so she knows she is not alone.
Looking through her old photo albums and recounting trips and how beautiful she is. I also make her homemade soups and puree them for her feeding tube and try to use some of her old recipes. I tell her all of the fresh ingredients I've used and prepare them with love. Sometimes if I can bring her into the kitchen, I cook and chat away while explaining each thing I am doing. I know when we have her eyes open, her vision is not too good as well. It breaks my heart every minute of the day- seeing what this disease has done to her in 4 short years and like you, I just try to kiss her and hug her and tell her how much she is loved.
It sounds like you are already doing a wonderful job caring for your Mom and I just wanted to share some of my experiences. Massaging and range of motion are one of the best things you can do and this also expresses love as well as important for her health. If you ever need anyone, we are all here for you and feel free to ask me anything. I'll be thinking of you and your family.
-michele

 

[LauraW]

Margaret and Michelle,
What special people you both are. You will be very blessed indeed! I am so sorry for what your loved ones have to endure but they are very lucky to have you in their lives. keep doing what you are doing. {{HUGS}} to both of you. God Bless!

 

[Al]

Hello Margaret. So sorry about your mom. Do they have anything like Hospice over there? They can be very helpful during these trying times.

AL.

 

[KickALS]

I suppose I should start a separate thread but I'd just like to add- that while the eyes are not usually affected, they do become dried out easily and everyone should take precautions to prevent this. The computers which most Pals have in front of them throughout the day and night give off immense heat. Pals do not blink as often and this is the only regret my friend has. She wishes she was lubricating her eyes more as her Doctor first warned her. When you do not blink as much, your eyes can develop a dry spot which you cannot repair. It is like a scar on the eye. During the day, a caregiver should remind you every hour and put drops in your eyes. Preservative-free do not burn- and you can use a wet cotton round to wipe the eye gently after. (Always be sure to hold the eye closed and wipe from the outside in). We have to remember that we all blink our eyes thousands of times a day and without the use of your hands, it is hard to wipe and clear your eyes from debris. I believe that with all of the other care necessary with an ALS Patient, the eyes often get overlooked, yet the eyes are sometimes all that one has so take extra care.
Your Doctor can prescribe an ointment to use at night to give extra lubrication- and it is not enjoyable as it is almost like vaseline. But even if you do one eye per night and alternate or put just a dot of ointment on the outside corner and allow it to work over night- you will be helping your eyes to remain lubricated. My friend tried every type of drop known but her favorite are from the brand Refresh called Celluvisc.

 

[karenaustralia]

Dear Margeret and Michelle i just want to say that if i were your mum or friend in this sad place that i would be so proud of how you are coping this must be so hard for you to see and you are both angels in training ... just be there talk hug and tell them they can let go when they are ready ... my thoughts are truly with you you are very special ... karen