Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

I CAN'T THANK ALL OF YOU ENOUGH FOR YOUR INPUT AND I AM CALLING OUR DR ON MONDAY TO SEE WHAT CAN BE DONE ABOUT MY HUSBAND'S CHOKING.....HE SPENDS MOST OF HIS TIME IN THE BATHROOM TRYING TO GET THE PHLEGM OUT OF HIS THROAT.....THEY TOL D HIM IT WAS CAUSED BY THE NUTRITION HE IS TAKING SIX TIMES A DAY......

Hello @allegro I am late to this conversation and not sure how I wasn't aware of it, but wanted to chime in. As they say 'better late than never'. It is great you have found the Mayo Connect community!

I am Scott and I was the caregiver for my wife during her 14+ year battle with brain cancer. The day to day grind of caregiving is intense and emotionally and physically draining for sure! One of the important things I learned as a caregiver is "Superheros only exist in the comics! Superman and Wonder Woman are not ever found in caregiving". We, as caregivers, can only do what we can and that varies by individual. Love is our fuel, which is better than any souped up, racing blend there is!

I also want to endorse what was mentioned by @debbraw and @colleenyoung about hospice. In my wife's case it was a very important added piece of her care. She had been ill for about 12 years when he prescribed hospice for her. She made the decision to opt for home hospice and in our situation it was a great decision. Hospice nurses were a tremendous help, they got her a hospital bed, meds got delivered, and she got great care. While the doctor said she might live for 6 weeks in hospice care, my wife fought for 14 months. The caregiving was still intense on my part, but it was manageable at a point where there was no way I could have done it alone any longer. In my wife's case home hospice was a great option for her late life care.

I also kept an old feather pillow on our sofa, which when times got extra tough used for a punching bag. I beat on that pillow and cried into it more times than I can count! It served a needed service --- until late one night about 2 am, I laid into it, my watch caught the fabric, cut it, and suddenly I had feathers all over! At least while I cleaned them up I was laughing at myself 🙂

I will only add one more thing -- another quote I like, which I think fits us caregivers. "Courage does not always roar. Sometimes it is a tiny whisper which says 'tomorrow I will try again."

Please feel free to ask me any questions you might have and I hope the sun is shining wherever you are today!

@allegr I've been thinking of you and wondering how everyone is doing now Hope your getting all the needed advice and it's helping

@allegro @IndianaScott Care giving is tough and it's one of the most meaningful jobs you can do for a loved one. Aside from hospice, there is also palliative care which is a different level of care that involves home health nurses that visit and monitor the patient at home. They can coordinate bathing and give advice if they think the doctors should be consulted. My dad had end stage heart disease and impaired judgement because of a head injury years earlier, and didn't want to go on hospice. I think to him it meant personal failure and he didn't want to die and leave my mother alone. That wasn't something he could change or control, but not officially being on hospice gave him some sense of control in his mind.

My parents were adamant about avoiding nursing homes except for the necessary rehab stays they both had after breaking bones from falling, and both required wheelcahirs. I was the family member nominated by everyone else to step in, and my siblings left that responsibility entirely to me. I hired and managed caregivers directly when I could find them, but there was no backup except me if workers didn't show up.

After one of my dad's hospital stays, I was able to get the powers that be to setup a hospital bed for my dad in the living room. He was getting to the point where he couldn't roll himself over in bed and required help to transfer and was just dead weight. I didn't have the physical strength to lift him which is what he always wanted, and I got a Hoyer Lift. He got depressed about that, and I told him it was for me because I was too weak to help him. That was true. I was doing all this physical and personal stuff at a time when I was in need of spine surgery for cervical stenosis for myself. There were times that I fell asleep sitting up and woke up in a lot of pain. The hospital staff always had a team of people to move a patient, but I was doing it alone. That is what is so hard, and there isn't much time to rest. If a patient gets up during the night and you interrupt your sleep to help, it gets harder. At best, I was only able to get back home half the time, and I used time at home to do payroll and pay bills, and often I would have to leave to go to the emergency room to advocate for my dad or mom. During this time, my mom also had ankle surgery caused by her injuries from a previous fall, and I was her attendant.

After my dad passed, I was able to come to Mayo for spine surgery. My mom wanted to stop employing caregivers, and she agreed to stay in her wheelchair and not try to walk on her own, and has done fairly well in the last 2 years. She can't drive, and I'm still her attendant for health care appointments, and grocery and medicine delivery person, but I don't have to stay at her home now. It's not a perfect solution, and I worry about her, and check on her often.

Care giving is difficult. Even though the burden was hard, I would still do it again if I had it to do over, and I have no regrets about how I handled the responsibility and for the time I spent with my dad. They didn't understand the burden of care giving that they put on me and really believed they could handle things themselves, but I know that I gave them more time together because I stepped in and advocated for them. At times, I had to convince my dad to go to the emergency room and I would get him to go because she was worried. He just didn't understand when he was in a serious situation. That becomes a balancing act when you are negotiating with a person who can't properly make decisions. A few years prior to this when they were still on their own, my mom would call me when my dad wasn't quite right, and I would get a sense of what was wrong and have her send him to the Emergency room. He never wanted to go, but it saved his life so many times.

I PRAY FOR ALL WHO ARE DEALING WITH THE DREADED ALS DIAGNOSIS...MY HUSBAND IS BEING ADMITTED TO A VETERANS HOSPITAL NOW AS HE HAS PROGRESSED TO A STAGE WHERE HE NEEDS 24/7 CARE WHICH I AM UNABLE TO GIVE HIM...MY HEART IS BREAKING AS AFTER BEINGTOGETHER FOR 66 YEARS WE ARE NOW BEING TORN APART BY THIS INSIDIOUS DISEASE.I TOOK CARE OF HIM WITH ALL THE LOVE IN MY HEART AND NOW WE ARE REACHING THAT POINT WHICH I HAVE DREADED......I PRAY EACH NIGHT FOR A CURE EVEN THOUGH IT IS TOO LATE FOR US...….JAN(ALLEGRO)

@allegro I'm so sorry for you maybe they could put an extra bed in your husband's room

@allegro - Oh Jan, my heart breaks for you. I cannot imagine how much this hurts. Please know that there are lots of people here wishing you the best and sending you good thoughts.

So sorry for your pain. We will have our 60th anniversary in Sept. Dreading the difficult times ahead. Sending hugs and prayers for comfort and peace.

Jan, my heart goes out to you. Those of us with long marriages endure a very difficult time to be separated. Take care and know we are with you.

THANK YOU SO MUCH FOR YOUR KIND WORDS...THEY MEAN ALOT TO ME...….XXXXX