Tired, guilty,stressed

[Dmaxwell]

My husband saw a neurologist in 2018 who listened to his symptoms and immediately suspected ALS. He refused to follow through with her. He was angry that she mentioned ALS and refused to see a doctor for over a year. The symptoms progressed and he finally saw another neurologist who confirmed the diagnosis in December 2019. He was seen at an ALS clinic in January. He had a g tube placed in March.

We have a part time aide 7 mornings a week.

He has lost the use of his arms. He can only walk with the aid of two people. He uses a BiPAP. He needs cough assist and suction many times a day. His anxiety and unhappiness are off the charts.We are close to signing up for hospice.

He (over?)analyzes every move we make and as a result of his cautious nature we always seem to be playing catch up with this horrible disease. We can’t sign up for hospice until he finally accepts delivery of his power wheelchair. We also need to have an appointment with communications specialists as hospice won’t cover the technology that he may need to communicate. This is after he refused appointments with these specialists in February because he believed the appointment would be too long and too taxing.

I am frustrated by the delay because we both need more assistance than we are getting. He needs different medications that will help with his anxiety and his breathing. His requests for help are nonstop and his criticism of the way the help is given is pretty much non stop as well.

The aide and I practically tiptoe around the house. He can’t tolerate chatting. I don’t cook any more because the smells bother him. He is unhappy when I speak to people on the phone...just quick daily check ins with our sisters and our sons.

I am sitting in our den with him now while he is sleeping in his hospital bed. Last night one of our sons stayed over so I did not have to get up to answer the many requests for help. I stepped outside to say goodbye to our son and came back in to an upset husband who said he had rung his button for help many times in the 5 minutes I was outside.

I know that five minutes is an eternity when you can not move but I do miss my freedom to do spontaneous things like walking out into a beautiful spring morning. Then the guilt comes rushing in, he will never ever be able to do simple things that bring pleasure.

 

[Elkhorn3]

Dmaxwell, I am so sorry. My husband's demeanor has changed a lot too - there may be some dementia involved with some forms of ALS. I think the fear and anxiety become overwhelming and turn into obsessive control. I'm glad you can recognize the guilt for what it is, and try not to let it beat you up! You can't compensate him for what he's going through. You can only help him through it as best you can. And please do take that walk out into the spring morning! You need to restore your soul. It must be very lonely for you to be in that struggle, but know you're not alone.

 

[vltsra]

Dear Dmaxwell, ALS is awful for both PALS and CALS. I understand how you are tired, guilty, and stressed. I've been here 4 1/2 years now.

It's important as a CALS to take care of yourself too. While I understand your PALS is demanding and has you on tiptoes, if you aren't doing things to keep yourself going you will crash. Instead of feeling guilty about simple pleasures you need to look at them as giving yourself the strength to go on as a caregiver. Your telephone calls and walking out into the morning sun are important.

Hopefully once you are able to get him into hospice you will have more support. My PALS is a slow progressor and hospice is off the table currently so I don't have any experience with them but understand it helps a lot. It sucks that once you are in hospice you can't get the equipment you need but hopefully you will get through this period. We are here for you to be able to speak your mind.

V

 

[affected]

So sorry to welcome you here. This is the hardest thing you are going to have to do, and we get it.
You wouldn't be there if you didn't love him, I hope you can find a calm place inside where you remember that your intentions are good and that this disease is eating the relationship away, not you.
You can vent here, and we get that you just need to let it out and then you can maybe find ways to get better strategies going. I do think hospice will help, but his attitude is unlikely to. Keep on talking and we will be here with you.

 

[Jimi]

I have managed to minimize my impact on the people around me by giving myself control of my environment and seat position. As I am paralyzed from the shoulders down, figuring out various home automation solutions has really been a great way to keep me mentally engaged, sane and pleasant to be around. Is there anything you can setup to give him some control over his environment? Things like fans, heat, computer, phone, lights, seating position, TV, stereo... The more the better ... Keeping the mind engaged is about all that we are usually left with, so anything you can do in that regard may help. All my best, Jim

 

[cfloriani]

So sorry to hear about what you and your family are going through. My husband was officially diagnosed in January of 2016 (at the age of 47) and has been in the care of hospice for three years now. Like your husband, he has had many changes in behavior, personality, and thinking. I have done much reading about cognitive changes / dementia with ALS and all of this is what I see with my husband. He is very unsettled throughout the day and night and needs everything done "just right" - from the way that I have to wipe his eyes in the proper u-shaped pattern to pointing his feet outward over and over again because it is not right the first time. When our nurse brought up hospice with us because of his breathing levels, it was shocking to hear initially. However, hospice has been nothing but helpful in so many ways. Our nurse comes weekly to check in. This eliminates the long and stressful trip to downtown Chicago to see his neurologist/doctor. The support of the social worker has been so helpful in dealing with the many behavioral and cognitive changes - and how they are impacting all of us including our kids. His meds have been tweaked over and over again. At one point, he was waking up every 1.5 hours or so because of discomfort and being unsettled. With the help of meds, he now sleeps through the night (for the most part) which makes both of us happy! For me, it's always helpful to know that others are going through the same journey and challenges. We are here to help.

 

[ecolon58]

YES, it is a very hard battle for both. We are in our 5th year. My husband has a power chair, feeding tube, cough assist and i gaze computer. He is 61. It is a battle to find good aides. The things that help me. I meditate, mostly Deepak and Oprah 21 day meditations. I try to summon compassion be aware of what he is going through. He has a condom catheter for night time so I don't have to get up when he has to urinate. I just started putting a leg bag on in the daytime and that is really a help also not having to get the urinal every time he has to go. Just empty when the bag is full. There are so many challenges, even with paperwork and phone calls, cause nothing ever goes smoothly. We go to the ALS support group and that really helps, meeting people with the same issues and making new friends. I just try to let things take care of themselves and not stress about what I can't change. Take some time for yourself and recharge as much as you can even if it's an hour, because that is the most time we get and it helps. I try to accept that things will never be the same and just try to live the best we can. Most times it's overwhelming. We have no other choice but to get through it. Try your best and let God take the difficult times.

 

[ARCG]

Sorry you are going through this. It is a hard road. We are in our 6th year and constantly adapting to new challenges. it is important to eat right and take care of yourself. Your pals is suffering, yes, but it would be way worse if you don’t take care of yourself. Just like they say on airplanes, put the oxygen mask on yourself before your child. I didn’t and my health has suffered. As caregivers, it is so instinctual to put others first, but taking care of yourself is crucial even if your pals can’t understand. You are faced with an overwhelming job, be kind to yourself.