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Chrissy62

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My sister was diagnosed about a year ago. We had a family reunion this summer, while she could still communicate yes/no, and her facial expressions helped us read her. Her ALS has taken over her upper region and she can no longer eat, speak, or show facial emotions. She has a feeding tube and may get a tracheotomy.

We are getting together for Easter. I've tried to prepare my kids (17-21) for their aunt's condition. How do we celebrate Easter when my sister can't go to church, or eat a traditional meal? This sounds so superficial, but I truly don't know - we don't want to celebrate with a traditional dinner, as my sister can't join us - she does not like to sit at a table, or try to be part of a conversation.

She can't speak, but also shows no interest in being part of any discussion - we don't know if its because she's not interested, or if she's frustrated she can't speak, or if the ALS has made it difficult for her to even understand or follow a conversation. We don't know what she wants, how she feels, and have no idea how to help her. She is trapped in her shell. I can not imagine what goes through her mind.

I hold it together (usually) in front of her, and try to be cheerful and positive. Then I leave her home and sit in the car and sob. I start to cry in the grocery store, or sitting at a stoplight in the car. I'm so incredibly sad my beautiful sister is deteriorating before our eyes.

How do people manage holidays? Nobody feels like a celebration, but with elderly parents, I want to be sure they have some semblance of Easter with some beauty and hope to it. It could be their last one... and they are despondent watching their daughter living in this shell. I'm open for suggestions.

My kids are old enough not to "need" the traditional holiday, but part of me thinks we should try to carry on normally - I just go round in circles trying to figure out how. This is the new "normal" and I don't know how to live it. Thanks for any advice.
 
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lgelb

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Chrissy, does she not have any kind of ability switch to use for communication? Can she blink? Twitch even one muscle reliably? People tape switches to their cheeks, thighs, fingers. Do you use word boards?

You both seem both trapped in some other reality. If you're not letting her see how you feel, and she can't tell you how she feels, why would she even consider a trach? It's not a decision I'd make without her!

If her ALS clinic is not helping her with AT, try your state's TAP program or an SCI clinic. Your questions and dilemma all go back to communication.

Best,
Laurie
 

ckck

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I whole heartedly agree with all that Laurie has said. I too cannot speak, swallow, or participate in family events. What I can say and would not presume to speak for your sister, is that although I don't engage in family conversations much I do enjoy listening to family members talk. Part of the difficulty is that by the time I use a text to speech app, the conversation has moved on. While I appear to be disinterested that is not the case. If she has any ability at tall to communicate it is best done one on one and not a group conversation.

I also enjoy having my family members sit down to traditional dinners even though I can't participate. I enjoy the smell and memories of dinners past even though I can't sit for long at the dinner table. So perhaps your sister does enjoy all the family around around, just in a passive way more than participative way.

Ken
 

Atsugi

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CHRISSY62, both Laurie and Ken gave excellent responses. I'll add only this. You said your sister "shows no interest in being part of any discussion - we don't know if its because she's not interested, or if she's frustrated she can't speak, or if the ALS has made it difficult for her to even understand or follow a conversation."

ALS does not damage the thinking and feeling part of the mind. She can hear you, see you, and she is laughing at your jokes--inside, where you can't see it.

My father had dementia--just stared straight ahead in a wheelchair, not speaking or acknowledging anyone's existence. But one day, my child tossed a football to him. Dad reached out suddenly and snatched it out of the air perfectly. They "played catch" for several minutes. My father never made a sound, a smile, or a wink. But he was still all there.

Always remember that your sister is still in there, looking forward to hearing about your day and seeing the new things you brought home. Read stories about her favorite subject. Let her watch TV and movies and listen to the radio. Everyone in the family should acknowledge her, say 'hi' to her, and pay attention to her in conversations.
 

Dave K

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How do people manage holidays?
It doesn't take much to make a day special. Have the family over. Decorate the house. Put on special clothes. Maybe some flowers, cards, balloons, etc. Any little thing can make a day seem special. Most importantly, include your PALS. She doesn't need to show it in order to feel happy and loved.

Regarding communication, a speech therapist could help A LOT. There are computers that can be controlled with a simple switch or someone's gaze. A great low-tech solution is a spelling board controlled by blinking. At minimum, "Yes" and "no" can be conveyed by looking to the right or left (face the PALS, spread your arms to the side, and say "look at this hand (wiggle hand) for yes or this hand (wiggle other hand) for no."). (Example: "Would you like to wear a special dress for Easter? Look at this hand for "yes" and this hand for "no."). Again, get a speech therapist to help. That is what they do.
 

Chrissy62

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Thank you all for your responses. I live 12 hours away and have not been as involved as I need to be. Communication is really poor because of the hope/dependence on this computer that isn't useful for her. My
Mom just ordered a communication board- low tech with letters and number. I just made several pages from internet pics that I hope can be a start for things beyond yes/no. Her eye tracking is bad, they tried it but with no success. She is very confused with numbers and letters so hopefully pictures will be useful. She does communicate yes/no with thumbs up/down for now. They have a speech therapist, but I'm not sure what success they've had with her suggestions. I'm frustrated there have been no picture boards so far. I will be there for a week and will be able to get first hand info. I'm so out of the loop being so far away- I'm afraid to appear at their doorstep and be opinionated, but will make suggestions gently with a "fresh set of eyes" so hopefully folks won't be offended. Her hubby doesn't want her to attend an Easter meal, he thinks it's mean to eat in front of her. So the idea of enjoying sitting at a table and smelling food needs to be suggested to my sister- we will follow her lead, as I don't want to assume she feels one way or another. But now I have another opinion of sitting at a table- Im grateful for that perspective. Thank you all for your ideas and support. You are helping me feel more empowered to be helpful to my sister.
 

affected

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We made all our own communication charts.

The picture one we made we did with photos and we made really silly photos. It was the first time in weeks my Chris laughed in a real way, and I knew if I could get him to help make the charts there was a chance he would use them.

It takes time and patience to communicate. Chris would become easily frustrated, but if I showed any kind of frustration at the difficulties, any tiredness he would immediately refuse to attempt to say anything.

My Chris was very embarrassed by how he looked, sounded and being peg fed.

He also found a lot of people overwhelming and isolating as he could not join in and felt he was just on the side.

He used to be the centre of attention - he was the one who cooked, served, joked, made sure everyone had everything. So for him to be unable to speak, more or eat it was very stressful.
 

hn7609

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Like your sister I'm in the locked in phase and everything is very difficult for everyone. We still have the family gatherings most holidays. What I enjoy the most about going is that we still do things the same. They have their feast, I just watch and get my feast from a can. I can follow the conversation and be satisfied, they know I can't talk and don't expect me to. I can still watch sports with the best of them. It is great for my wife to get a chance to be with extended family, not stuck home being the CALS. For me the hardest thing is preventing my wife and children from having normalcy in their lives. I'm always willing to have them take me most anywhere. I mean they have to do all the work and I'll be stuck in the wheelchair anyway, doesn't really matter where they park it. Try and make it a normal holiday don't make your sister the main attraction, Just being there will bring her some joy
 

Chrissy62

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Thank you all for your kind, encouraging words. I was too late.. My beautiful loving sister passed away last night. Been driving all day to be home with family. Bless you all and much love and strength in your journey.
 

lgelb

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[mod note: Chrissy's other thread has been placed in the In Memoriam subforum for those who want to express sympathy]
 
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