Eat and sleep regularly. Take time for yourself. Breathe. This is often the advice caregivers receive. Although these are important it’s sometimes not the most helpful or only scratches the surface of what advice caregivers really need, especially for those who are caring for someone with ALS. Based on what caregivers in our area have experienced, here is a list of advice specifically intended for caring with someone with ALS.
Being a full-time caregiver, especially over a prolonged period of time (my husband bravely lived with ALS for almost eleven years), is extremely exhausting. In every way — physically, mentally, emotionally, and even spiritually. The thing that becomes most apparent is that some things simply don’t matter. On the other hand, things that used to seem insignificant become a priority.
Touching was major. I continued packing up Don and all his equipment and attending Sunday evening services until the Sunday a week before he left us. Why? It was a lot of work. That’s true. But it mattered to Don. He could feel normal when he was worshiping. Also, we had developed a habit many years ago of holding hands, and we held hands through the entire service. Well, he could no longer hold my hand, but I could sure hold his!
Bedtime was always precious. No matter how exhausted we both were, we made it a special time. It would take me about 45 minutes to get him down. Then I would take his hands, lean over him, and we’d pray. At first, he did the praying, and I listened. Before he passed, our roles had switched. I held his hands, and I prayed. As long as he was able to speak, the last words out of his mouth before I left his side and climbed into my own bed were, “You’re my angel!”
With all the caregiver has on his/her plate, a “time for me” schedule is almost impossible. My advice: stay emotionally, mentally and spiritually sound. Don’t allow respect and affection to fall by the wayside. The patient has lost so much, but the caregiver plays a major role in keeping the self-esteem intact.
Remember, you’re only one person. Give yourself some grace. There will be days when you feel like you’ve been successful. Everything on your list got crossed off, and you had some energy left at the end on the day. Other days, there are simply not enough hours in the day to do it all. When those days come, don’t beat yourself up. You have tomorrow. It’s fresh and new. You can do this. Stay strong!
I would say don’t be shy enlisting the help of others and family, etc., but that never really came together in my case. What may sound negative, growing up my family was more disconnected and distant, so when there was little to no offering of assistance until much later, it was not an unusual situation for me. So the option was to plow ahead, try not to get stressed and know the person suffering from ALS has it much worse than the caregiver in the end. That was really all I had.
For quite a while I did use what was fairly new the grocery shopping service and delivery, as well as more Amazon purchasing of goods I would get at the store. So that was a helpful resource, but it was a bit difficult for me since I did a lot of the grocery shopping and really limited the ability to select fresh produce, but overall they did pretty good considering the situation.
A couple of Deb’s friends did show up when her progress was getting advanced and realized how isolated we were and that gave me a little time to go to the store as they sat with her, but they were not really able to help her with tube feeding of transferring her to a travel wheelchair to go to the bathroom, mostly because Deb was nervous about others who were not experienced with such things helping her. A realistic fear of falling and not being able to be picked back up by her friends, plus it may have made her feel too vulnerable and was perhaps in a sense embarrassing. That is something a caregiver cannot control or convince the person with ALS if they have a strong feeling about it.
If you’re using an ALS clinic don’t be afraid to ask for help and what to expect and what can be done to make life with ALS’s progress more comfortable. That was our best resource. It is important to feel good about the team and ask lots of questions, even if they seem obvious or inappropriate. Better to learn more than you need and not use it than to be thrown for a loop, because you felt like a question was odd.
People ask me “isn’t it difficult doing the things I have to do to help my husband?” and I say no. Because of love, I want to help him and I feel now I get to pay him back for all he did years ago for me when I needed extra help or he just offered it. When things are embarrassing we usually try to laugh about it. That relaxes us both. We try not to keep it too serious. I don’t call a towel on him a bib. I always say apron or towel. I don’t call Depends diapers, I just say underwear. We adjust to the changes and try not to talk negative about it. Being positive helps us both. I try to get him to help make the major decisions in our household rather than make them on my own. He can’t speak but he can indicate his opinion or write it for me. I want him to feel important and useful. He can fold laundry so that helps me. When he wants to do something I try to do those things. Sometimes the house suffers because I can’t get it all clean but he is happy going out so that is what we do. Other times it is the opposite, we don’t go out to eat because he can’t eat as fast as the others or it is difficult so we stay in or I pick up the food. Or when we do go out to eat, I know he will eat less and fill his plate accordingly.
The biggest help is laughing together. We enjoy movies at home and now I can freely cry if they make me emotional because with him having some bulbar palsy, he can’t always control his emotions so we either cry together or start laughing about it. No we can’t share those long lingering kisses anymore and trying to hug around a wheelchair takes away from the mood but a fist bump when turning out the lights replaces those kisses good night. No, not the same, but it has to do. I’m just grateful we have had eleven years together with ALS but our love continues to grow.