“I’m sorry, but you have ALS.”
This man who I had known such a short time was dying. He was my friend, and then my lover. I had known him less than two years. Our relationship was incredibly new, both of us not willing to jump into something so serious, so quickly. This was devastating and unexpected. And this changed everything.
I didn’t know what to do but I knew I wouldn’t leave him to go through this all alone. I promised to stay by him as he went through this. He would soon become my husband. Looking back, it all seemed so much easier in my mind than what the reality of ALS would bring into our lives. I wish there had been someone to sit me down and tell me what to expect, and what to do.
There are support groups, both in town and online. They were helpful, but somehow I would always leave feeling worse than when I walked in. The online support groups are helpful, but it was also incredibly overwhelming at first, as the people posting were much further along in the diagnosis then we were, and sometimes, I wasn’t ready to face what our reality would be.
Yes, I am saying “we.” I think by this time, I have that right. We are going through this together. I am right there, by his side, as he slowly deteriorates. As he has lost the use of his arms and legs, I am the one who has stepped up and become his limbs, his voice, and the person he turns to for help.
Becoming a caregiver is challenging and at times very difficult. It can be a very emotional time, as you are trying to care for someone else. The stress of having to learn new medical terms, find equipment, learn insurance jargon and paperwork, and numerous doctor’s appointments can be daunting. Depending on the speed of the disease, (each patient is different) some people find themselves struggling to keep up with all the new challenges. Many caregivers are forced to continue working and many are still raising families.
This was a completely new world to me. At the time of his diagnosis, I was 36 years old. The most I knew about how to care for someone else, was in raising my babies. A daunting task, but with each passing year, a child gains independence. I had never cared for someone who was sick. Becoming a caregiver to someone with ALS is not unlike caring for a child in some ways, someone who will become more child-like in his needs with each passing year. However, we grieve the losses now instead of rejoicing at the new accomplishments.
If I would have known then what I know now, I think I could have saved myself a lot of unnecessary stress. Now, when I meet with families that are dealing with many of the same issues, I give the advice I wish I would have known years ago.
I have met many caregivers and family members over the last few years who are now dealing with ALS as well. Like me, they too are overwhelmed and scared at what the future holds. I find that this role changes a person’s outlook on life. Many of the experiences I have had are similar to what they are now experiencing. I wanted to find a way to explain from a caregiver’s point of view, their needs that they are often too proud to ask for. Caregivers have pride and dignity. Sometimes, they are so proud, they want to ask for help, but find that they can’t. Other times, they fail to communicate their needs, and can’t understand why others can’t simply know what they need. They are sacrificing their own independence and goals and life dreams, while they care for someone else. They are also dealing with the fact that their loved one is dying and they are powerless to stop it. This is an extremely stressful time in their life, and there is no way of anticipating all the needs for both the patient and the caregiver, but I wanted to find a way to help others look for small ways they can help.
I have noticed that in the beginning, many people offer help, or they reach out and say that we should contact them if we want something. Please don’t expect us to ask for help. Often times, we can’t. It becomes a source of shame for us to have to ask for help on top of all the other things we do. We feel it is our responsibility, and we don’t want to burden others. Soon, the offers of help slowly fade, and so do the visitors.
Many people with ALS become lonely, as family and friends continue with their lives, with little to no contact from them. While phone calls and text messages are appreciated, so is stopping by and visiting. Each family is different. Maybe stopping in for a quick visit is a great idea to some, but to others, a phone call ahead of time to find a time that would be good for everyone would be better appreciated. Either way, don’t stop visiting. I understand it is difficult to see someone change, to look different, and to lose their ability to communicate or move, but I promise you, it is much more difficult to find yourself all alone because no one comes over to spend time with you anymore.
Below is a small list of ideas you can do to help someone you know who is a caregiver. Because by helping the caregiver, you are also showing your love and support to the person with the terminal illness.
- Meals – This may sound simple, but taking over a meal that can be easily frozen is one of the most thoughtful gestures. Many times, caregivers are tired and the last thing they feel like doing is cooking and cleaning the dishes afterwards. The delivery boy will become a familiar face to these families. If you have the time, take over a home-cooked meal. It is simple, and thoughtful! Be sure to know ahead of time of any allergies!
- Clean – This one is such a hard one for caregivers to ask for! I am much too proud to ask for help with cleaning. I am lucky that my husband and I have a paid caregiver that comes in and does the laundry, mops and does the dishes. Even these simple basic things can help relieve some of the stress added onto caregivers! Many caregivers do not have additional money to hire someone to clean, and they are often too proud or ashamed to ask for help. Sometimes, showing up and offering to mop, vacuum and do the dishes while they take a little nap can be just enough help to let the caregiver feel appreciated!
- Sit and let us vent! – This one is a big one for me! I have a few friends that I know I can go to and just talk. They let me talk about the good, the bad AND the ugly. I know it isn’t easy for them to hear what I am going through. There is nothing they can do to fix it, but simply listening helps me feel validated in my feelings and helps relieve some of the pressure that can build up inside when I hold it all in. Also, do not judge! Sometimes, we need to say something that you may not agree with, but unless you are walking in those exact shoes, you can never understand the emotional rollercoaster of what it is like to be a caregiver to someone you love.
- Honey – do List – There is always something that may need done around the house. Offer to help. Maybe it is winterizing the yard, or getting the sprinklers ready for summer, or something as simple as hanging a few pictures. Offering to help with some of the items on the to-do list that are often not the most important thing or that the caregiver doesn’t have time to get to, can be a huge help. If you have a little extra money, maybe hire someone to do lawn care, or snow removal. Removing some of these burdens for the caregiver can make a huge difference in their quality of life.
- Take the kids to do fun things too! – Please remember that an ALS diagnosis affects everyone in the household. It is hard for my children to not get to go do fun things because the person I care for cannot go outside due to the weather, or handicap accessibility or even simply because they are resting or are sick. If you can help take the kids out on excursions, it helps relieve some of the guilt the caregiver may have that their children are not getting to experience a normal life like other children. It also allows the caregiver a little quiet time to hopefully rest.
- Spend time with the person with ALS– As ALS progresses, the caregiver becomes just as secluded as the person with ALS. Offer to come sit and visit with the patient so the caregiver can have a couple of hours to themselves. Maybe they want to go to a movie or dinner with a friend. I find myself getting sad that we don’t have a social life on the weekends, and seeing everyone else having fun on social media can be depressing for both of us. It would be nice to get to go do something and know that my husband has a friend spending time with him as well.
- Let the caregiver sleep! – Many caregivers do not get adequate sleep. Coming over and offering to just be there quietly so the caregiver can nap is a great way to offer support. A person with ALS can have a difficult time sleeping. They need to be adjusted throughout the night, which requires help in turning and re-positioning. After a period of time, caregivers can become exhausted due to lack of sleep and stress. Coming over and offering to spend time with the person with ALS, so the caregiver can have a nap can help them recharge and feel supported.
- Surprise the caregiver with a thoughtful gift – Many people become so focused on the person with the disease, they forget about the caregiver. Surprise them with a gift as well. Try to find out things they enjoy or that may make their life a little easier. Arriving with a special coffee or tea is something that can brighten their day. It doesn’t have to be an extravagant gift to show that you care for both of them. Little things like this can help ease the burden of the caregiver feeling alone during this time. This also shows that you appreciate the sacrifice the caregiver has chosen to do, to care for someone else.
Remember that the chances of you becoming a caregiver or patient at some point in your life are extremely likely. Maybe you will have to care for an aging parent, or a spouse who becomes ill. I hope that you never have to, but if you do, please remember to ask for what you need. There is no shame in asking, and being vulnerable to your own needs helps others to know what they can do to support you.
Showing empathy and support can make a world of difference for both the patient and the caregiver. If you are uncomfortable with helping, there are other ways to show your support. Just be sure to find ways to stay connected! A terminal illness is difficult for everyone, but it is important to realize that there are many ways to show your love.
If nothing else, share this. Maybe those you love will see it and it will remind them to step up and lend a hand!
Wishing you all a wonderful holiday season, with love and laughter,