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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@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 🙂

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

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@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?

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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…

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@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…

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@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?

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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.

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@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.

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@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?

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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………..

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

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@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………..

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@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?

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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

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@rmftucker

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

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THANK YOU FOR YOUR CONCERN, RM,,,,IT HELPS TO KNOW OTHERS CARE ABOUT A COMPLETE STRANGER…….

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