Worried about a friend who's wife has ALS

[Atsugi]

You're a good friend trying to make the best of a terrible situation.

"We feel that she is at the point where she shouldn't have a say in what "she" wants, but what is best for the rest of the family"

It's certainly wise and necessary to consider the survivor's needs. But does she have dementia? I agree that it's good to help him find options. also I suggest "tread lightly" if you should find yourself advising him what to do about his own wife.

My wife (RIP) never got to any point where I would go against her wishes, even a little. I can't imagine going against her wishes. If someone were to advise me otherwise, I would be quite angry. That's all I'm saying. Good luck to you and them.

 

[Eastwood56]

Mike, thanks for the input. I will tread lightly with the husband. I respect him so much and we have developed a trusting friendship that I don't want to jeopardize. Would really like to see him get a representative from ALS to assess the situation. I think he really needs their help and guidance at this stage and the sooner the better for everyone. Only he can be the one that ask for their help, she does not want them and this is where part of the problem lies. He is trying to respect her wishes, but is suffering so much with helping her and putting up with her rages.

 

[Atsugi]

Thanks for understanding the spirit in which I was writing. Good luck.

 

[affected]

ALS doesn't have stages like cancer. It's incredibly hard to say 'where' any PALS is along a 'line' of progression. I'm just saying because some PALS seems so far progressed and yet live on a fair amount of time extremely debilitated whilst other PALS are still walking and eating and simply stop breathing one night.

Now, having said this, FEAR is a huge factor for many PALS. She may be very fearful. PALS are also incredibly fragile and their needs are nothing like other diseases. You will read here that CALS regularly say they cannot leave their PALS alone in a hospital as nurses don't look after them well.

Maybe you can start by spending time there, and help reach a point where he can leave the room and go do something he enjoys for an hour or two and you would be with his PALS and she get to enjoy this.

If there is any FTD involved reasoning won't work, but repeated exposure to you being around may work a little.

I bet you thought we might pop out some magic answer ... sadly this beast is incredibly difficult and it's and individual journey that we take a day at a time

 

[Eastwood56]

Hello friends, we just visited our dear friend today with ALS. We are trying to do all we can for both her (T) and her husband (B). When we arrive, we can feel the tension in the air between the two of them. Our approach is to bring laughter into the room and also a break for both of them. We tell B to take off for a few hours and during that time with T, we talk about the past and do what we can to make her smile. It is actually a good time for all of us, however I know it is not enough.

My wife and I know that T likes to have massages, so we have someone coming in twice a week to give her massages. We don't mind paying for the service, however I would have thought that ALS or Hospice would help out a little.

That is not our real issue with this note, we are looking for a better way to communicate with T. She is so hard to understand and we have a chart with letters and specific words to point at when she is trying to tell us something. We have heard about a device that she can put on her head to communicate with, however, she doesn't want to use that device.....she can be very stubborn!

Have any of you found a better way to communicate with someone with ALS besides going through the alphabet or trying to make out the words they are trying to say?

Thanks
Your friends in Honeoye, NY

 

[Janis J]

My husband is learning to use a computer from Tobii Dynavox that is controlled by eye gaze and includes speech generation. Medicare covers some of the cost. There might be similar devices from other manufacturers, and you could check to see if their local ALS Association has one for her to try.

 

[Eastwood56]

Thanks Janis, I will look into this device too. T is very stubborn and although I know she wants to communicate with everyone, she seems offensive to using items that could make her life easier (for everyone).

 

[lgelb]

From the household situation you have described, I doubt eye gaze is the answer. It takes a lot of work on both sides. Abilities permitting, I would look at a head mouse (SmartNav), or if she still has any finger movement, an AAC app on an iPad. Most importantly, I would sit down with her, using a laptop and show her some of the options for her own understanding and agreement.

 

[Eastwood56]

Well right now, when she tries to speak, we can make out some of her words, however, it is not easy to make the words out all the time. What they have to help out is a laminated piece of paper with the letters of the alphabet on it. Three rows of letters along with some common words like Yes and No, Maybe. When she tries to spell a word(s), we go to the letter we think she is saying. Many times we are wrong and will have to go line by line to get the right letter.

We are OK with doing this, however, I think T gets frustrated at times using this technique.

T can move her fingers on her controls for the wheelchair, however, she can not pick up her hands at all. T use to be a talker, so I think this is part of her frustration that she can't get the words out as fast as she could before. Knowing that this is going to get worse, just looking for the best ways to communicate with her.

Thanks again for everyone's help on this.

Eastwood56

 

[Janis J]

I agree that the eye gaze technology my husband is learning is not for everyone. That was recommended for him after lots of assessment by assistive technology experts who specialize in helping people with ALS. Perhaps T's ALS clinic includes such specialists who can recommend possible solutions that would work for her.

Janis

 

[Harley]

Hi folks,

Please forgive me if I am briefly invading your space ..... After having a "vivid" dream, trying not to return to the nightmare, I would normally be joining my "family" on the Parkinson's forum site. I have been lurking here for some time...making every effort not to enter into the discussion at this point.

However, reading this thread.......discovering the diverse personalities...has touched my heart. I have had Parkinson's since 2011...diagnosed since 2013. Without meds, I am at a 3+ with 5 being at end stage.

My husband has recently been seen by my Neuro who put him on the fast track to rule out Parkinsons (PD).....but at the same time is considering ALS as a possible dx. As I have searched this forum, I am discovering that my husband (DH) is classic for the symptoms . I am following my own advice I would give to a PD newbie, and not speculating ...dealing only with "knowns"....and awaiting a report of findings on March 8.

However, this thread struck a nerve. I have pleaded and vented on our forum for care givers (CG's) to speak the truth about advanced stages....to let us with PD (PWP) know what it looks like down the road. They hesitate in fear of depressing PWP....they form personal exchange groups, and provide support to each other in the "shadows". In their desire to protect PWP from the reality and "darkness", they have placed all care givers in the background....where no light exposes THEIR reality. Their selflessness has unintended consequences......few people...including budget writers for government agencies and non profits...really understand the demanding role of CG's /CALS.

I applaud this discussion. In the pursuit to maintain positive "vibes" for persons with chronic illnesses, our major diseases are commonly portrayed as shoes absent from persons....or spokesmen who show little signs of the disease and appear to continue in their full capacity. Yet, at the same time, we see commercials of real truth elsewhere....diseased puppies....starving children....destroyed landscape from environmental issues. The varied...and vast ...impact of chronic disease remains away from "the clearing" and out of sight.

This forum is filled with God's children who take on the responsibility of caring for their loved ones....their neighbors...and each other...with the pure intent of service and love ....seeking only the reward of "giving".

I will go away now ...back to lurking...and refrain from joining your conversations at the table....for right now. If what I suspect becomes my reality....if I learn a certainty that I will share my role as a PWP with that of a care giver for an exponentially fast process... facing the scenario of watching the dear love of my life (46 years) endure ALS.....then I will return. Now I know another "family" exists next door that will offer me the same support and friendship I receive from my "family".

Thank you all for who you are, what you do, and taking the energy to share your wisdom with others....even lurkers you never see.

Keep swimming...<smile>

Harley

 

[pittsburghgal]

Harley, never feel that you are invading our space. I hope and pray that your husband does not have ALS but if you do get this diagnosis, you will find a lot of support here.

Sharon

 

[Eastwood56]

Sharon, I was going through the forum again and couldn't get over how your response is so close to what is going on with our friends. The husband is burned out and thank goodness for Tia's brother because he is staying with them during this difficult time. The brother does offer some relief time for the husband to regroup, however the husband really needs more than just a few hours each day due to the increased dependency on him.

It has gotten to the point where the husband said that he needs one day a week to get away. OK, enough with not mentioning first names; Bill is the husband, Mike is the brother and Tia is person with ALS. I don't blame Bill for needing to get away, however he has indicated that the ALS group in his area has limited support and can only give him a few hours each week.

Anyways, we are all trying to do the best we can. Deb and I (Gary), try to go to their home once a week for a few hours. We have a two and a half hour drive just to get there and at times, we struggle to say we will be coming, but we know how much they look forward to us coming there and after we leave, we are happy we went.

They just need more help and it seems like ALS doesn't have enough resources to help them.

Tia has also finally agreed to look into the device that allows her to speak to others via a headset. Is this something that ALS provides or does it have to be bought?

Any help would be greatly appreciated.

Thanks
Eastwood56 (Gary)

 

[pittsburghgal]

Gary, I wish I had friends (or even family) like you and your wife. God bless you for doing this for your friend.

I also have contacted the ALS Association and did not get much help as far as respite care. I have parents in their late 80's who live in another state who I have not been able to visit in 18 months because I have no one to care for my husband and he requires a high level of care with a trach and PEG. I am in such fear that my parents will die and I will not even be able to go to the funeral.

I do not know about the speech device because we are not yet at that point. I do call the ALS Association whenever I need anything though and they have helped me many times with equipment needs, so I would check with them first.

Sharon