Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Posted by allegro @allegro, Sat, Apr 27 9:54am

WE ARE DEALING WITH MY HUSBANDS ALS AND IT S DEVASTATING…I AM FIGHTING DEPRESSION AND PANIC ATTACKS,,,CAN ANYONE OFFER SOME HOPE????? JAN

@allegro I'm so sorry about your husband As a retired nurse my heart sinks for your husband and you .Do you take time for yourself? There is respite care available from nursing agencies that can give you some time for yourself I pray you will find something that can help One thing is have you talked to your Dr. Or social worker from the hospital I'm not aware if the ALS network has anyone that can help or give you suggestions .You have to be strong for your husband but in turn need support for you also Blessings to you

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THANK YOU FOR YOUR KIND AND SUPPORTIVE WORDS, LIONESS, I HAVE SO MUCH RESPECT FOR YOU NURSES..I KEEP PRAYING FOR A MIRACLE..SUCH A DEVASTATING DISEASE AND SO UNKIND TO ALL INVOLVED…..I AM TRYING TO BE STRONG BUT HAVE ANXIETY ATTACKS EVERY DAY…….THANK GOD FOR ATIVAN………….

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@allegro

THANK YOU FOR YOUR KIND AND SUPPORTIVE WORDS, LIONESS, I HAVE SO MUCH RESPECT FOR YOU NURSES..I KEEP PRAYING FOR A MIRACLE..SUCH A DEVASTATING DISEASE AND SO UNKIND TO ALL INVOLVED…..I AM TRYING TO BE STRONG BUT HAVE ANXIETY ATTACKS EVERY DAY…….THANK GOD FOR ATIVAN………….

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@allegro Its hard on the family God bless you he is your helper

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HE FELL AGAIN TODAY FOR THE 13TH TIME SINCE AUGUST…HE IS 88 AND I AM 87,,,,BUT HE WANTS TO STAY AT HOME AS LONG AS HE CAN AND I WANT HIM TO ALSO….BUT IT IS STARTING TOTAKE IT'S TOLL ON MY OLD BODY……..IT JUST HELPS TO BE ABLE TO WRITE TO SOMEONE WHO CAN RELATE TO THIS DEVASTATING DISEASE………..GOD IS IN CHARGE NOW………..ALLEGRO

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@allegro. I'm so sorry 💔 Are you able to have a caretaker come in for a couple of hours to help you?

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MY THREE CHILDREN HELP ALOT AND THINK I SHOULD CONSIDER A NURSING HOME BUT WE HAVE BEEN MARRIED 66 YRS AND I CANT IMAGINE LIFE WITHOUT HIM HERE

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@allegro

MY THREE CHILDREN HELP ALOT AND THINK I SHOULD CONSIDER A NURSING HOME BUT WE HAVE BEEN MARRIED 66 YRS AND I CANT IMAGINE LIFE WITHOUT HIM HERE

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@allegro I am so sorry for what you and your husband are going through. I really know nothing about ALS but it sounds devastating. Along with the help of your children, you probably could get a visiting nurse or someone to come in, as @lioness suggested. That might help a bit. There are Medicare benefits for services like that. I am sure it would be extremely difficult to put a loved in a nursing home.
Thoughts and prayers are with you.
JK

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THANK YOU FOR YOUR KIND WORDS, JK……I HAVE COME TO THE CONCLUSION THAT ALS STANDS FOR "A LIFE STOLEN", AS THAT IS EXACTLY WHAT IS DOES TO ONE AND THEIR FAMILY……..

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@allegro, Making the decision to care for your husband at home or care (nursing) home is a heart-wrenching decision. I'd like to bring a few other caregiver members into this conversation like @julesa @debbraw and @rmftucker. While their partners do not have ALS, they have had to make choices about care for their husbands and for themselves. I hope they'll add their experiences.

You may also be interested in this discussion
– Dealing with anxiety/guilt over spouse in LTC with Dementia https://connect.mayoclinic.org/discussion/dealing-with-anxiety-guilt-over-spouse-in-ltc-with-dementia/

Personally, I think part of your decision has to consider which setting allows you to be the best caregiver to him and to maintain your health and well-being. Naturally, you want to do what is right for him, but you also have to do what is right for you and for both of you in the time you have left together. There is no right answer. But the decision you make will be the one that is right for the information and situation you have in front of you now.

How are doing today?

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I have no answers. My husband has mixed dementia and want to keep him home so he can be in a place he loves. It’s so hard watching your best friend slowly deteriorating. It’s too hard to think much about the future so I try to enjoy what I can each day and be thankful for it.

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It is never easy to place your loved one in a care facility. My husband is 62 years old and has been in memory care since 2015. I visit him daily but I’m not sure he knows who I am. He is unable to communicate.
You need to think about taking care of yourself and do what is best for both of you. I pray God will give you strength when you need it most . God’s Blessings !

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@colleenyoung

@allegro, Making the decision to care for your husband at home or care (nursing) home is a heart-wrenching decision. I'd like to bring a few other caregiver members into this conversation like @julesa @debbraw and @rmftucker. While their partners do not have ALS, they have had to make choices about care for their husbands and for themselves. I hope they'll add their experiences.

You may also be interested in this discussion
– Dealing with anxiety/guilt over spouse in LTC with Dementia https://connect.mayoclinic.org/discussion/dealing-with-anxiety-guilt-over-spouse-in-ltc-with-dementia/

Personally, I think part of your decision has to consider which setting allows you to be the best caregiver to him and to maintain your health and well-being. Naturally, you want to do what is right for him, but you also have to do what is right for you and for both of you in the time you have left together. There is no right answer. But the decision you make will be the one that is right for the information and situation you have in front of you now.

How are doing today?

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I HAVE GOOD DAYS AND BAD DAYS….SOMETIMES I THINK I CAN'T DO THIS ANYMORE, AND THEN I REALIZE HOW MUCH HARDER IT IS FOR MY HUSBAND AND I SHOULDN'T FEEL THIS WAY……I WAKE UP EACH DAY WITH AN ANXIETY ATTACK BUT IT FINALLY PASSES WHEN I HAVE TO START THE CARETAKING…..HE DOES NOT WANT TO GO TO A FACILITY AND I THINK HE WOULD RESENT ME IF I FELT HE SHOULD….ALS STANDS FOR "A LIFE STOLEN" IN MY ESTIMATION……..

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@allegro – My heart is just breaking for you. My husband has dementia – probably moderately severe at this point. Even though I don't have experience with ALS, I know how difficult caregiving can be and how badly it hurts to watch the love of your life face a series of heart-wrenching losses. This is especially true when there is absolutely nothing you can do to make it stop. My husband was diagnosed in 2015 with Mild Cognitive Impairment. Obviously, at this point it has progressed substantially. This year I joined a Caregivers Support Group at our local Council on Aging. I learned that one of the services our local hospice offers is grief counseling for caregivers. Today I met with the hospice therapist for the first time. I wish I had done it sooner – both the support group and the therapist. I'm wondering what kind of support services you have access to? Trust me: You CANNOT do this alone. The hope I could offer you is to find a support group, seek out a therapist/counselor, start looking at the care facilities in your area – even if you won't need them for awhile, and find out what hospice can do for you. All of these things can bring peace of mind. For the first time in a long time, today when I was walking outside after the counseling session, I saw that the sky was blue. I felt the breeze. And I thought "I'm glad I'm alive. It's not the life I meant to have, but I'm glad to be here right this minute." Sometimes I believe that's all we can hope for and today it was enough for me. Can you tell me more about when your husband was diagnosed and what kind of help and support your have?

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@debbraw

@allegro – My heart is just breaking for you. My husband has dementia – probably moderately severe at this point. Even though I don't have experience with ALS, I know how difficult caregiving can be and how badly it hurts to watch the love of your life face a series of heart-wrenching losses. This is especially true when there is absolutely nothing you can do to make it stop. My husband was diagnosed in 2015 with Mild Cognitive Impairment. Obviously, at this point it has progressed substantially. This year I joined a Caregivers Support Group at our local Council on Aging. I learned that one of the services our local hospice offers is grief counseling for caregivers. Today I met with the hospice therapist for the first time. I wish I had done it sooner – both the support group and the therapist. I'm wondering what kind of support services you have access to? Trust me: You CANNOT do this alone. The hope I could offer you is to find a support group, seek out a therapist/counselor, start looking at the care facilities in your area – even if you won't need them for awhile, and find out what hospice can do for you. All of these things can bring peace of mind. For the first time in a long time, today when I was walking outside after the counseling session, I saw that the sky was blue. I felt the breeze. And I thought "I'm glad I'm alive. It's not the life I meant to have, but I'm glad to be here right this minute." Sometimes I believe that's all we can hope for and today it was enough for me. Can you tell me more about when your husband was diagnosed and what kind of help and support your have?

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Hospice is a great idea, @debbraw. Hospices offer many resources and service for families and support caregivers. Thanks for the reminder.

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@allegro

I HAVE GOOD DAYS AND BAD DAYS….SOMETIMES I THINK I CAN'T DO THIS ANYMORE, AND THEN I REALIZE HOW MUCH HARDER IT IS FOR MY HUSBAND AND I SHOULDN'T FEEL THIS WAY……I WAKE UP EACH DAY WITH AN ANXIETY ATTACK BUT IT FINALLY PASSES WHEN I HAVE TO START THE CARETAKING…..HE DOES NOT WANT TO GO TO A FACILITY AND I THINK HE WOULD RESENT ME IF I FELT HE SHOULD….ALS STANDS FOR "A LIFE STOLEN" IN MY ESTIMATION……..

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@allegro
Hello,
I’m very sorry for what your going through both physically and emotionally.
My cousin had ALS some years ago. While he was able he chose the date to turn off any machines. I, to some degree, know how challenging this horrendous ailment is to deal with. Not as much as you obviously. I understand there are medications now that may help although I don’t know anything about them except they are not a cure but may slow some of the physical symptoms associated with it. There was nothing available when my cousin had it. I believe it’s very admirable you keeping him home for now. I can relate to being a caretaker. Difficult doesn’t even begin to describe what it’s like caring for someone so ill. I helped care for my Dad who was paralyzed from the neck down
(C-5 Quadriplegic.) As hard as it is for you your loved ones needs obviously must come first and as hard as it is you must cope with all the challenges that are coming. As intensely difficult as it is for you, we care givers are so very fortunate. I’m not sure you understand what I’m trying to convey and not very compassionate perhaps but please believe me I know how hard the day to day challenges are and even to a certain degree the loss.
May God give you the tremendous strength you need to get through this. I will be praying for you both and your family.
Blessings,
Jake

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