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letty 01-19-2009 09:03 PM

How does one keep his/her spirits up?
Hi All,

My husband was DXed with bulbar onset 2/08.

I am on a combo of antidepressants to be able to supervise his medical care, foods, medications, etc.. I do manage to get out sometimes, but how do caretakers manage to deal with the grief and sadness themselves. Thank sso much. Letty

hopingforthebest 01-19-2009 11:04 PM

Dear Letty:

My husband has the slower progression classification of ALS, and for that I am thankful. He has no use of arms, has neck weakness, hard to hold his head up without collar, and is on the bipap 20 hrs a day as his breathing is affected due to his diaphram muscle not working well.

So, with that said, he still has full use of his legs and can walk, and the ALS clinic's recent visit said no change in past 3 months. I give thanks for every positive thing and ask God for extended quality life for my husband. That is how "I" cope with all this.
Without our faith, I think it would be very very difficult to cope "for us".

Getting some time for yourself is so important. I am also blessed to have adult kids living 20 to 30 minutes from us.

This forum is my late night read when I cannot sleep and the support and suggestions are always here for the reading.

Take care of yourself also. We are no good to our PALS without getting a break and getting the proper rest. If you don't have the support, ask for it at the Clinic visits. They are so glad to help you.

judylyne 01-20-2009 11:57 AM

I'm sorry you are going through this because I know the pain of watching your husband go through this. I know what helped me. My husband wanted to remember all the fun things we did. I don't know how long you've been married but we were married 42 years so thats a lot of funny crazy memories. Talk about when you first met and what you liked about him. Tell him how much you love him. It helps to be able to laugh together. No matter how much you think your going to prepare yourself for what is to come you can't. Judy

letty 01-23-2009 01:56 PM

Thank you!
:razz:Thank you for being candid and supportive. Letty

MtPockets 01-23-2009 04:30 PM

For a lift to your spirit
Perhaps this thread can help you make over the rough spots and the trying times we all face. Please read the whole thread for the most help.

Flowerpot 01-24-2009 02:28 PM


You go with the flow - some days I found we had times of chat and humour, then there were days of more serious talk. The role of the carer changes within minutes and tolerance is the skill you will learn with sadness and happiness. Make sure you have a good support network.

However , there are times of joy and laughter and I encourage you to cherish these occasions.

Kind regards


Marjorie R. Wilcox 01-25-2009 01:29 PM

Rick and I have our faith, our love of playing very competitive card games with friends and family, and being involved with the community and volunteering and so on. He is the PALS, and he keeps doing all the things that fulfill being treasurer of the Elks lodge and preparing tax returns. ALS slows him, but he doesn't have to hurry.

Personally at home together we talk about all the years we grew up in the same town, and the people we knew and still see. We read together and watch tv together and discuss current events. We take care of each other and build each other up, and help each other with the chores. We talk about life and death and this dreaded disease. We talk about what could happen along the way and how we'll deal with it.

We show each other great affection. We embrace a lot and hold hands like teenagers. We try to grant each and every wish to each other if it is possible. We make the most of every day. We argue sometimes, or scold each other, but don't ever let it become resentful. We are still newly married and are intimate often at 60 and 61

When he becomes more immobile, I plan to bring things to where he is, and include him in my sights so he can join in my life still. If he can't speak or move, we will have onesided conversations and I will be in such tune to him I will know what he would say without saying anything.

Everybody should do these things to strengthen their lives whether or not there is ALS. Yes you have to heed the symptoms and limitations... the imminent outcome too, but you have to prevent ALS from being in the forefront. Keep it in your peripheral vision.

stgeorge 01-29-2009 09:06 AM

Dear Letty,
I'm so sorry you sre going through this also. My husband, for 28 years, has Bulbar ALS. This is the beginning of our 3rd yr. We have laughed and cried so many times together. I wish I new the answer. I would love for someone to talk to. I just can't talk with anyone in my family or his. Although they are very loving and supportive. I'v been offered medication but have not taken any.

CindyM 01-29-2009 11:29 AM

Hello stgeorge. Life gets overwhelming when caring for a PAL. I wish you did not feel alone in this but know that there are lots of folks in your shoes around here and all are really caring and supportive of one another. Talk to us anytime! Cindy

Tfisher 01-29-2009 12:23 PM


It isn't very easy is it? I am caring for my mom with bulbar onset diagnosed 06/08 but symtoms started about a year before. She still tries to talk as much as she can but many times some other form of communication has to be used. I just try to make my mom laugh as much as I can and sometimes put words in her mouth because if we didn't laugh we'd be crying. Hang in there.

brooksea 01-29-2009 05:04 PM


I try not to let things overwhelm me, but some days tears do come. I just take it a day at a time and hope for the best.

Please hang in there. Medication does help!


Very sorry about your husband. Mine just turned 50 and has had ALS diagnosed for over 2 years (bulbar/limb onset).

Have you contacted the ALS Assoc of Georgia? Don't know if they have support group in your area. You're way out in the country! I feel citified now!

I would Private Msg you but you haven't been on the forum enough yet to allow me to do so.

I hope you will keep posting to let us know how you are coping. Most of the time family and friends do not understand.

OhioArt2 01-29-2009 09:12 PM

Letty -

I cried myself asleep - a lot. I told myself (when stressed about care-taking) that it was, unfortuntely, temporary. But the relationship with my mom was hard because I was caring for her while my heart was breaking.

We laughed a LOT. We watched funny shows/movies - I told her stories andmade her laugh - she's write things to me that would crack me up.

She passed this past Christmas Eve.

Now? I cry myself asleep... a LOT.


MtPockets 02-08-2009 03:58 PM

I am so sorry to hear that Penny. Sometimes I think the tears are the medication God has sent to remind us how precious our loved ones and life itself is to us.

For those, who may be putting off saying something to a loved or maybe visiting them, [U]Please, do it now[/U]. I know they will appreciate it greatly. You will have the wonderful memories of the visits and the things shared.
Share some of the good old times you had together. Including some of the embarrassing but funny moments. The laughs and the sharing do us both a lot of good. The bible says laughter is like a medicine, it does the heart good. Best of all laughing at ourselves and with others is good for the soul.

I hope when I pass, they will remember the fun times, the good times, the times we spent laughing at our foolishness and fun times together. How we enjoyed life together, not the sorrow of the few days at the end. Rememer the good times.

[B]Life is much more than how we leave it, it is how we lived it.[/B]

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