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Would be grateful for ideas
Hello, I have learned a lot from reading your wonderful posts in the last year. My dear friend and colleague of 30+ years was diagnosed 2 years ago. I am going up to visit him in a day or two. He can no longer speak or move very much. His wife told me last night that he is hopeless and very depressed and she is not able to comfort him. Anything you can share that might help with this? Stuff like “aw, things will be ok” doesn’t seem to apply here. I am anxious and want very much to cheer him up. Thanks in advance! tracy
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8 Replies
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Hi Tracy,
You are right. “Aw, things will be OK” doesn’t apply because they aren’t OK.
Just your presence and the fact you cared enough to visit will probably lift his spirits. I would be honest about your anxious feelings and share them with him. Does he have a method of communicating? If he does, I would attempt to talk about his feelings and what he is going through. The grief may come, and that is OK.
I, myself, grieve every day for what I have lost. Somedays, it is just a passing thought; other days, it is a good cry! I have to let it out. In my life, sadness is the first step in grief. A good cry often allows me to move on to acceptance and clears my mind. It can be a cathartic moment that changes my perspective.
I respond to hugs and touch, so those are good for me, but you know him – if he was not a hugger before, he might have changed. It sounds like you have worked with him for a long time; reminiscing about any good times or funny stories at work would be enjoyable. Talking about family, yours and his, would-be another avenue.
You are a professional musician from your profile – bring your instrument along and play for him. Music always lifts my spirits – I listen to youtube videos every day. I call my genre of music depressingly/optimistic. It has a feeling of loss but always provides some hope! If you want suggestions, let me know.
Fear and anxiousness are normal in any unknown situation – go with the flow – you will do great! I chose to stay in a nursing home once for respite to get over the anxious feeling of the first time. The fear is then gone! I know I can deal with anything that comes up. I have stayed in several now, some good, some not so good, but I am still here!
I hope your visit goes well. Please let us know how the visit goes – you can provide much needed
information to the forum!I hope this helped; peace to you.
Len
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Thank you so much for your thoughtful words. I just got back from the visit, and it was a very good one. My friend can’t form words anymore, but I sure was able to make him laugh, just like always. He has very little movement left, but he is very much still in there, and still the same exact person I have always known, with the same contagious laugh. I enjoyed being able to feed him, watch tennis and movies together, show him funny youtube videos, and even play a little NY Mets multiple-choice trivia. We helped his wife with some cleaning, and just spent time with him so she could get out and do a few things she needed to do. She is doing an amazing job taking care of him. I will be going back up there a lot this summer. Thank you so much to everyone who replied to my post. PS> If anyone is worried about getting a feeding tube, he got one 9 days ago and it isn’t bothering him at all.
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Tracy,
I am so glad your visit went well! Thanks for sharing how it went and giving this community your ideas of what makes a visit enjoyable for a pALS and the visitor. You are a true friend.
Len
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Just being there will help. No heavy conversations unless your friend starts the conversation. Let him express himself and be supportive.
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Hi TRACY,
Yes, you being there will be a show of love and that’s the most important thing. This disease is such a mixed bag of emotions. I’ve lost my ability to speak and eat in April. I’m now on a MIC-KEY feeding tube and I employ the PREDICTABLE APP to help me comunicate. I’m being evaluated for an eye tracking device as my hands and arms are weakening. I don’t know about your friends view of God but I rely on God to lean on every single day. If I’m having trouble lifting my hands to brush my teeth or pullup my pants up I look to my right and thank God for being there for me and to act as my circut breaker against depression. In my experiance no matter how bad I have it I know others still have it worse. Len’s music is also such a blessing. No matter what comes our way we can still be a positive force by showing gratitude with a smile for a helping hand.
A book he might pick up recommended by Dr. BEDLACK “Tuesdays with Morrie”. It’s worth the short read.
Do I still get sad? Of course I do. This life of ours is a split second wheather we live a few years of a hunderd. Tracy, you are doing God’s work by your outpouring of love. LOVE IS ALL WE NEED!
FOR ME GOD IS LOVE, BLESS YOU and all in this conversation.
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Hi TRACY,
Yes, you being there will be a show of love and that’s the most important thing. This disease is such a mixed bag of emotions. I’ve lost my ability to speak and eat in April. I’m now on a MIC-KEY feeding tube and I employ the PREDICTABLE APP to help me comunicate. I’m being evaluated for an eye tracking device as my hands and arms are weakening. I don’t know about your friends view of God but I rely on God to lean on every single day. If I’m having trouble lifting my hands to brush my teeth or pullup my pants up I look to my right and thank God for being there for me and to act as my circut breaker against depression. In my experiance no matter how bad I have it I know others still have it worse. Len’s music is also such a blessing. No matter what comes our way we can still be a positive force by showing gratitude with a smile for a helping hand.
A book he might pick up recommended by Dr. BEDLACK “Tuesdays with Morrie”. It’s worth the short read.
Do I still get sad? Of course I do. This life of ours is a split second wheather we live a few years of a hunderd. Tracy, you are doing God’s work by your outpouring of love. LOVE IS ALL WE NEED!
FOR ME GOD IS LOVE, BLESS YOU and all in this conversation.
Louis -
Tracy- The advice you’ve already received is solid – your presence alone will be uplifting. Prepare yourself, because your dear friend and colleague may be unrecognizable. He will look, communicate and act differently, but he’s still in there. Find a way to connect. If speech isn’t possible then- aac or a tablet/ipad. If necessary move on to a dry erase board, or grunts and gestures until you find that connection. You could just sit with him, and ask some yes/no questions. Be prepared and patient. Hope your visit goes well.
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Hi Tracy and other participants,
I’m glad your trip went well with your friend. He seems to be in the same frame of mind as my brother, who has had ALS for 2 1/2 years. He has been on radiclava infusions since he was diagnosed. For 2 years, he did very well and was able to talk, walk, eat, drive and was able to deal with the disease at this level. Then 2-3 months ago, he took his first downturn and he has had several others since then. This is where he is different from your friend. He is in deep depression and all he thinks about is his death and what it will be like. He is inconsolable and does not want to see anyone, including me and other friends and relatives. His wife is his caretaker. He is very proud and doesn’t want anyone to see him in his condition. He refuses to join these forums and talk to people in the same situation. He refuses anti-depressants. I think he will refuse the feeding tube when the time comes. We are all at our wits end…I have asked for suggestions and support but the problem is that he won’t accept or try anything and he just won’t help himself. It’s so nice that you were able to raise your friend’s spirits…I am only able to do one thing for him and that is to pray.
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