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

@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?

Jump to this post

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

REPLY

@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 ?

REPLY
@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 ?

Jump to this post

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

REPLY
@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

Jump to this post

@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 🙂

REPLY
@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

Jump to this post

@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?

REPLY
@lioness

@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 🙂

Jump to this post

@lioness– Thank you for inviting me in Linda. I hope that I helped!

REPLY
@merpreb

@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?

Jump to this post

Your letter has already helped in so many ways…I know I take on too much responsibility but I feel that he is not able to and it's my job as his wife………for better or worse…..and believe me, some days it can't get any worse…..He is a very stubborn man who refuses to believe that ALS is going to beat him…he is still able to use a walker but falls often,,,,,when I am alone I can't pick him up and have to call someone to help…

REPLY
@allegro

Your letter has already helped in so many ways…I know I take on too much responsibility but I feel that he is not able to and it's my job as his wife………for better or worse…..and believe me, some days it can't get any worse…..He is a very stubborn man who refuses to believe that ALS is going to beat him…he is still able to use a walker but falls often,,,,,when I am alone I can't pick him up and have to call someone to help…

Jump to this post

@allegro– This is why I suggest you call hospice, because he'll listen to the nurses. My husband refused to acknowledge that he snored- for well over 30 years! There is nothing like a stubborn patient! Has the doctor been frank with him and explained everything to him?
Who do you call when he's fallen? I get the responsibility thing but can you turn some things over to your kids? There is just so much that you can do. If he gives you grief about it just try and convey that you can't handle it all and that he will have to compromise.
Is his walker sturdy with a seat if he needs one? How do you get him into bed or out in the middle of the night? There are a lot of practical things that a hospice nurse can advise you on. When you call them they will meet with you and you can talk over things. You don't have to sign up. Will you give them a chance? Make a call?

REPLY

@merpreb Thanks Merry

REPLY

Your suggestion of asking the Dr to talk with him is a good one. I was so concerned on how we were going to get the car keys from my husband, but at a Dr
s visit she was informed that he had blacked out a couple times for a very short time, and she called me aside to say he shouldn't be driving. I told her to tell him and he never offered or tried to drive again. He had his driver's license yet and would tell people that he could still drive, but he never tried to.

REPLY

@rmftucker– My sister and I had to do the same thing with my mother to get her to stop driving! The doctor also let her keep her license! And she never drove again either. YEAH.
Lots of times spouses will listen to others more than us because it gets tricky with power struggles, or control issues. It's always better to involve someone else. Care takers shouldn't always be the "bad guys". I also think that it is the doctor's responsibility that he make such things clear, to the patient to help set perimeters for their safety.

REPLY
@merpreb

@allegro– This is why I suggest you call hospice, because he'll listen to the nurses. My husband refused to acknowledge that he snored- for well over 30 years! There is nothing like a stubborn patient! Has the doctor been frank with him and explained everything to him?
Who do you call when he's fallen? I get the responsibility thing but can you turn some things over to your kids? There is just so much that you can do. If he gives you grief about it just try and convey that you can't handle it all and that he will have to compromise.
Is his walker sturdy with a seat if he needs one? How do you get him into bed or out in the middle of the night? There are a lot of practical things that a hospice nurse can advise you on. When you call them they will meet with you and you can talk over things. You don't have to sign up. Will you give them a chance? Make a call?

Jump to this post

I CALL ONE OF OUR BOYS WHEN HE FALLS, AND THEY ARE WONDERFUL ABOUT HELPING OUT…BUT THEY HAVE JOBS AND FAMILIES TO TEND TO ALSO, AND I FEEL MOSTLY RESPONSIBLE FOR HIS WELFARE.HOME HEALTH HAS BEEN A BIG HELP ALSO, AND THEY SEEM TO BE ABLE TO GET THRU TO HIM WHEN I CAN'T…I GOT OUT TODAY FOR THE FIRST TIME IN THREE WEEKS AND HAD AN APPT. WITH THE HAIR SALON.IT WAS LIKE HEAVEN FOR ME….MY OLDEST SON TOOK OVER AS HE WAS FREE THIS AFTERNOON……..WHAT A NICE NEEDED BREAK………..

REPLY

Glad things are going better. It is a rough road and we never know where the journey will take us. Take care.

REPLY
@allegro

I CALL ONE OF OUR BOYS WHEN HE FALLS, AND THEY ARE WONDERFUL ABOUT HELPING OUT…BUT THEY HAVE JOBS AND FAMILIES TO TEND TO ALSO, AND I FEEL MOSTLY RESPONSIBLE FOR HIS WELFARE.HOME HEALTH HAS BEEN A BIG HELP ALSO, AND THEY SEEM TO BE ABLE TO GET THRU TO HIM WHEN I CAN'T…I GOT OUT TODAY FOR THE FIRST TIME IN THREE WEEKS AND HAD AN APPT. WITH THE HAIR SALON.IT WAS LIKE HEAVEN FOR ME….MY OLDEST SON TOOK OVER AS HE WAS FREE THIS AFTERNOON……..WHAT A NICE NEEDED BREAK………..

Jump to this post

@allegro– Good for you! I always felt better too, and my patience was re-vitalized. lol. How lucky you are to have such helpful sons. Do they live near you?

REPLY

YES, ONE IS A PARAMEDIC AND THE OTHER A HIGH SCHOOL PRINCIPAL, AND MY DAUGHTER WORKS FOR A DR….SO I AM TRULY BLESSED..OUR FOURTH CHILD LIVES IN SEATTLE WITH HIS FAMILY AND TRIES TO GET HOME WHENEVER HE CAN…..THEY HELP IN EVERY WAY THEY CAN, BUT HAVE BUSY LIVES OF THEIR OWN….THEY ARE DEVASTATED ABOUT THEIR DAD AND TREASURE EVERY MOMENT THEY HAVE WITH HIM…LIKE I SAID GOD IS IN CHARGE NOW……..THANK YOU FOR ASKING,,,,,,,,,JAN

REPLY
Please login or register to post a reply.