Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Posted by allegro @allegro, Apr 27, 2019

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

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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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@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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debraw….My husband was diagnosed in August of last yr and has since fallen 13 times…..he has cut his face, needed stitches on his head, but thankfully has never broken a bone….but each time I live in dread of his breaking his hip or whatever….I have four children who are wonderful in helping with his care, but I am the one who is alone 24/7 with him, and I am slowly losing my mind….I hate seeing the once strong , powerful lovely man deteriorate into a bag of bones who weighs 139 lbs……..having lost 50 …..I have Home Health who comes twice a week, and I do appreciate them so much but it's the times in between when I am here with him that are so heartbreaking…..there are no support groups in our area for ALS and I feel very alone….I can't put him in a nursing home as I don't think I could bear seeing him there among strangers…my kids feel we can keep him here at home as long as they are all here to help..but I have may sleepless nites filled with anxiety…….thank you for writing……..I appreciate it so much…..jan

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@allegro It has to be so tough for you . I could see it in families that would come to see there love one in the nursing home . You are on a good format here at Connect we here care and will listen to you so you can use this to get angry or cry what ever you need there are a lot of people who care I remember when my husband had his stroke and I had to still work so I hired a trusted friend to take care of my husband while I worked . She was a lady I worked with in the nursing home . Would that be an option for you so you and your kids could go out for awhile ?

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@lioness

@allegro It has to be so tough for you . I could see it in families that would come to see there love one in the nursing home . You are on a good format here at Connect we here care and will listen to you so you can use this to get angry or cry what ever you need there are a lot of people who care I remember when my husband had his stroke and I had to still work so I hired a trusted friend to take care of my husband while I worked . She was a lady I worked with in the nursing home . Would that be an option for you so you and your kids could go out for awhile ?

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it really does help to be able to vent once in awhile….at least it makes me feel like I am not alone…..I hate to sound like I am complaining because I am really not…it's just that it gets so frustrating at times, especially when you feel so darn helpless……so thank you for letting me use this format to vent …..I so appreciate it……….Jan

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@allegro

it really does help to be able to vent once in awhile….at least it makes me feel like I am not alone…..I hate to sound like I am complaining because I am really not…it's just that it gets so frustrating at times, especially when you feel so darn helpless……so thank you for letting me use this format to vent …..I so appreciate it……….Jan

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@allegro We are so glad your here to vent as a lot of us do . I'm going to ask that @merpreb come into the conversation she may have more information on anxiety @depression then me. Stay strong , know we care 🙂

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@allegro

it really does help to be able to vent once in awhile….at least it makes me feel like I am not alone…..I hate to sound like I am complaining because I am really not…it's just that it gets so frustrating at times, especially when you feel so darn helpless……so thank you for letting me use this format to vent …..I so appreciate it……….Jan

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@allegro– Hello Jan. I have no personal experience either with ALS but I was my mother's main care taker when she had Parkinson's Disease. Watching the falls, and yes she'd fall just standing next to me and there was nothing that I could do, and not being able to stop them was horrible. It's heart breaking and devastating to watch the decline of a best friend. Not only do you have to deal with their feelings but you have to stay on top of yours too. As your husband takes the lead in guiding all decisions that need to be made regarding his care make sure that you talk with him if any seem impossible or not practical. Compromises still have to take place if necessary. Everyone needs to be able to do their best and most.
I'm sure that you have many many questions and I whole hardheartedly agree that you should bring hospice in. They will help with major decisions and pick up any nuances that you and your children might miss relating the his care.
Hospice will also be your support system. I had to have them help my younger sister through my mother's illness. There was no way the I could care for both of their emotional needs.
One thing that helped me was when one of the hospice nurses pointed out that I was a caretaker (loving and caring) but not a healer. I needed to let the doctor and nurses make the decisions that would be best for him medically. Of course they discussed everything with me but this eased my mind and lessened my frustration. It also made me a better daughter caring for my mom. She had also had a form of dementia. Because dementia can be the most trying of all frustrations I made myself get out of the house at least once a day. There is not any way that you can be your best of a caretaker and not have breaks and breaks away from the house. Get outside and breath in fresh air and have the sun beat down on you. Eat clean and well. Cry and yell if need be.
Sleepless nights are certainly understandable. I wish that I could help guide you for the future. No one knows what that holds. If your husband's illness scares you or is making you anxious than I think that researching what to expect will help. If you are unsure what happens in the dying process with ALS please find out. It is a process and not an event during the end of an illness. Speak with his doctor and ask all the questions that you have. Your time for depression will come afterwards and there are plenty of people on Connect to help you through this.
I don't have to tell you that frustration is the number one factor in thinking that you can change things. ALS is not something that will allow this. Support groups are wonderful and we all hope that you will vent and complain all you want on Connect but I think that part of your loneliness is what you are facing you for the future. I am hoping that you do call hospice. You might be taking on too much for yourself. And I agree, that you can't do this by yourself. This care-taking is a very tough journey to travel and being open and honest about what is going on with the best person able to answer that question will help immensely.
This might help you in making a decision about hospice: https://www.compassus.com/for-caregivers/signs-it-may-be-time-for-hospice
How are you feeling today? What equipment do you have that will make it easier for him to get around, unless he is bedridden?
When you are alone with your husband what kind of conversations take place? Can he read, play cards or games?
If during the times that it is just the two of you play music if he loves it or movies.
Please stay with us and let us help you as much as we can. Vent away and complain and yell. Can I help in any other way?

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