New at this

[stresstothemax]

I hope I am in the right place to communicate with other caregivers. This forum is all new to me and I don't know how to navigate it yet. It was suggested to me to get into group therapy but I decided to try this instead. I don't know if this will work but I'm willing to give it a try. My son came to live with me 3 yrs ago and I have been taking care of him ever since. To watch him get worse and worse is hard to watch. The hardest is communicating with him. To understand what he wants I have to go through the whole alphabet and he makes a sound when I come up on the letter. It is so frustrating for him and for me.

 

[Nikki J]

Sorry to welcome you.

You will find lots of people willing to share experiences. If you are literally running the alphabet there are definitely other low tech ways. My sister used eyegaze mostly but we had an alphabet card with letters in rows. We would slowly point to each row in turn and she would indicate which row held the letter she wanted. We then did each letter in that row.

Others have common requests on a boardand the PALS directs the gaze to indicate what they want

We also had success with drill down questions that were yes no. - is it to do with your body? Do you need to be repositioned? Etc. it takes practice and some patience but it worked

Please continue to post. You are among friends

 

[KimT]

We might be able to make suggestions if we know a little more about you and your PALS. Does he have the use of either hand, even one finger?

Are you getting help caring for him?

If he can use his eyes, he might be able to use eye gaze technology.

Feel free to ask any questions. We are all here and there are many caregivers who are so willing to help.

 

[soonerwife]

Welcome stresstothemax! You have found a wonderful place for information and support. I have problems communicating with my PALS as well. He is still testing though. For us, sometimes he doesn't give me enough info in the text to make sense. It's like he knows in his head what he is thinking but doesn't know how to make me understand.

I am sure others that are at the same place as you all are will chime in soon. I have heard of others making picture boards of common things that are needed?!

 

[Manhattanite]

Sorry to welcome you here but also happy to welcome you here because this forum is a great resource. Like you, I chose not to join individual or group therapy and instead used this forum to vent and to look for advice. I hope you find it as useful as I did!

 

[stresstothemax]

My son is unable to move at all. He can not speak except to make this guttural sound to get out attention. We are at this time trying to get his computer set up for eye gaze but he needs to be reevaluated. I'm waiting for an appointment. ALS lent us a head mouse but I don't really think he will be able to use it because he has no control over his head. My husband helps as much as he can and my sister does also. I just got approved with his insurance for a CNA to come in and give him his baths three times a week. I looked on line the get pointers on how to cope. They mention laughter, forgiving yourself, relish the good days, doing for others,etc. I don't find humor in anything. I try to go into the past and find humor but can't. I have faith but I think my faith is waning. I see people like Joey and Rory Leek and how she had such faith and love for the Lord as she was dying from CA and I can't seem to find that. I don't know, it is hard to explain but I want such joy in the Lord and be thankful for everyday I have with my son, and I am thankful but I feel it's only verbal and not real. Sorry to ramble on

 

[lgelb]

Very sorry to hear about your son. You can rant and ramble here as much as you like. I'm sure most everyone here understands that it's hard to find humor in a life that includes a loved one's loss of mobility and death. But you can be open to it still and occasionally that is what you will feel, along with simple joys.

Best,
Laurie

 

[Narrowminded]

Stressedtothemax - Welcome! I'm sorry I had to meet you here, but this is one of the greatest places this side of heaven. You will get great help and advice here. I've been at this coming up on 13 years from onset of symptoms with my husband, Brian. Then he was trached/vented 7 years ago. He too is bed bound and before his computer that allowed him to speak, we too used a letter board. When he's not in front of his computer, like when ready for bed or first thing in the morning, I will ask him general questions and then get more defined, like is it with your body? If he indicates yes, by blinking for him, then I will do a scan of his body, head to toe until he blinks that is the problem, then I will ask more yes/no questions as to the problem with that. If its not his body, I will ask about his bed, then the room etc. Broad then narrow. Again a letter board, or a board that has pictures of things he might need/want makes it easier until you can get a computer. Also, Brian uses the little movement he has in one thumb to operate a switch to use his computer. They can almost use any muscle that will work to work a switch, so if he can't get the eye gaze, get a good therapist out to assess any little twitch he can make.

I'm happy to hear you have a small amount of help. That makes a huge difference. If you can go to therapy, trust me - go. I finally started this summer and I have found it very useful. It's individual, for me more comfortable. However, this forum started it all and probably still would not be going if it wasn't for this place getting me on the right track.

To have fun and find joy here is what I do. I'll tease Brian about something and it makes us both happy. Like he has a lot of mucous - not fun, but I'll call him bubble man in a loving way. Or if there is something that you know your son loves and brings him joy, do what you can to help him to see that, maybe a youtube video. If you have a tablet or even you phone, you could hold it in front of him. Or a blue ray player or smart TV. When you see that he is happy or finding joy, you will too. If you do something and it turns out wrong, make fun of yourself. Turn that incident into something silly or an inside joke. If you wait for the joy or fun to smack you in the face you won't find it. You have to make it, just as in life w/o ALS.

Also, it may be possible that you are depressed as well. I know I was on some Celexa for a few years, others here have been on Zoloft. There is no shame in needing that help to get over the hump. What we deal with is hard. I could not imagine one of my kids going through this, it's tough enough with my husband. So do take time out to talk to your PCP at least.

You mentioned faith - pray, find some good devotionals. Remember God is out there for you, but you have to ask for help.

We are all here for you.

Hugs,

Sue

 

[mommychops]

i just lost my 44-yr-old son, who had been living with us for the last 1-1/2 years. the only way i could handle it was to be thankful for the good things...that he was not in pain...whatever i could be thankful for. zoloft helped, as well. he used a laser pointer and a core board. both invaluable for communication. he died quietly and suddenly in his sleep. had been terrified of choking. we are thankful for that, as well. it's just a HORRIBLE HORRIBLE thing to go through, but this forum helped me so much. my heart goes out to you.

 

[mommychops]

amazing re the 'body scan'. 1st the body, then the bed, then the array of machines. he could no longer move anything. he did not want me to be his primary caregiver. let me know that he wanted me to be his mom. i picture him free and flying.

 

[stresstothemax]

Thank you for your words of encouragement. My son is 45 and he has been with me the last 3 years. He is a very stoic man so it is hard to get anything out of him. I didn't give the eye blinking a thought. I will have to give it a try and also the "scan" a try . Maybe it will decrease the frustration. I'm not looking for humor to smack me in the face because like you said it will not happen but I do try to do things that I think will make him smile and it doesn't happen. Even his aunt comes over and makes over him and tries to make him smile and it doesn't happen. The rare time that he does smile I tell him that is what I'm looking for. His smile makes my day. He wants me to be his primary caregiver 24/7. I told him after a couple of years I can't do it anymore. He was not happy but I told him he will have to allow his dad and aunt to help him. I know God is there for him and this family but I would like for a big hug from him and assure me all will be well. I know it won't happen unless his uses another person as him instrument but it still would be nice. I am on an antidepressant but I still have crying jags for no reason. I just break out and start crying. Thank the Lord for my sister because she can bring me out of it.

 

[Narrowminded]

Stress - It could be your DS is depressed as well and he would have every right to be. Maybe get an eval for that. a small dose of antidepressant might just be what the Dr ordered to help him.

Hugs,

Sue

 

[stresstothemax]

I know he is depressed but he told me he does not want to take any antidepressant. He makes my job harder with him because I know what he needs and should get but I hit a wall with him. I am a retired nurse and I tell him what he needs to do but he just won't do it. He has bed sores on his butt and I tell him he needs to get off it so I reposition him in bed on his side with pillows and he tells me to take them out. He needs to take more formula then 24oz a day but refuses to take anymore and the beat goes on. I get so angry with him but it goes in one ear and out the other. I'm at my wits end. Sorry to unload because I know you struggle with your PAL. Take care Sue. One day at a time, that is all we all can do. Thanks for talking with me. Becky

 

[stresstothemax]

Thank you Laurie for you welcoming me to the forum. I don't know all the acronyms that is used but with time I will figure them out. Thanks again. Becky

 

[Narrowminded]

Becky - before this forum and many years ago, I knew Brian was depressed so on a clinic visit day I called ahead and told the Dr that I believed Brian was depressed and needed something to help with that but that I didn't want to bring it up. He spoke with Brian (just asked general questions and never used the word depression) and agreed. On the way out he handed me a script for Zoloft for him. Right or wrong of me, I did not tell Brian, I just slipped it into his food. For years he had no idea he was on it. It was very low dose and helped him considerably. Looking back, was it the right thing? Well, it didn't prolong his life and won't, but it made him a bit more pleasant and engaged. Zoloft, if you don't already know, melts in water very quickly. Into his food and off you go. Only you can decide if it's the right thing for you to do for your son. I don't regret it, but sometime I question going against his wishes. As a nurse though, you also know that many people don't even realize they are depressed and therefore won't heed your warning about it.

Hugs,

Sue