CHAD BLOOMING, PALS, march 11, 1955 - may 11, 2007
I'm a CALS. I'm not physically caring for my husband, Chad, any longer. His battle with A.L.S. ended on May 11th. We don't say that he lost the battle -- because he didn't. He fought the good fight -- with strength, hope, humor and dignity. And now that my days are no longer filled with caring for Chad's physical well-being, I'm focusing on doing any and everything I can to raise money and awareness about this nightmare illness. And I'm convinced that one day in the not too distant future there WILL be a cure.
Shirley asked me to write something here about my experiences. I've been trying to think about what might be the most helpful or insightful -- and I got stuck. So what I'm going to do is to just share with you a few things from my perspective which is now -- so very sadly -- looking back on my time as a caregiver. I learned a lot during the time I cared for my sweet husband -- and I can see more now that I wish I had known.
Chad had A.L.S. for nearly 3 years. He was diagnosed just two years after we were married -- and passed away just about 6 weeks shy of our 5th anniversary. It was easy at first -- like all of us -- to feel so incredibly angry at A.L.S. -- at the universe -- at whatever vision of G-d we have -- to think that our loved one was going to suffer and ultimately be taken away from us. Of course we did that for awhile. But Chad's outlook was amazing. He always told us that "Each day is a gift." And he believed that and he lived it. Chad was a man who looked at the good in everyone -- he felt that "everyone is always doing the best they can at the time." These two perspectives have changed me and helped me. I wish I had seen it all this clearly before I lost my sweetheart. Some days I got it -- some days I didn't. I was doing the best I could. All I can do now is to be the best I can be each day and to share with you in the hopes that perhaps in some small way it might make your days a little better -- both now -- and later if you have to face a loss.
First, here is what our situation was. We have a 17-year-old daughter, a dog, cat and bunny. I am so very blessed to have a job where I work full time from our home. I had to keep working while Chad was ill. So I worked and cared for Chad. We had no family nearby, so I was his primary caregiver. 24/7. The last year, we both lived downstairs in the family room as he could not manage the stairs. At first, I had a bed in the family room. Then, when that was too far away, I switched to a couch which I could pull right next to Chad's lift chair where he slept. For the last year, I couldn't leave the house unless there was someone to stay with Chad. For the last 6 months or so, I basically didn't go anywhere unless it was a function related to our daughter. Hospice delivered medications and friends and our daughter and her friends ran errands.
We had hospice for nearly a year. They provided so much help and support that I cannot stress enough what a blessing it is to call them. Chad didn't want me to do it -- but I knew we needed the help. There is often the sense that calling hospice means that you are giving up -- or that the end is near -- this isn't true. They have a checklist of symptoms for ALS and if you fit their criteria, they will take you on. They offer an amazing amount of help -- from in-home health aides to covering the cost of all prescriptions to sending out volunteers to help you around the home or sit with your PALS while you take a break. It's so worth it. Call them. And, if you live in an area where there is a hospice in-patient facility (sadly, we do not) -- they will offer you 5 days/month where your PALS can go and get wonderful care while you get a break. Do it. Really. Even if your PALS doesn't want you to. Explain to them that it's just a great way to get low or no cost help.
You have to do whatever it takes to take care of youself -- and in doing so -- you are taking better care of your PALS. A huge thing I learned this past year is to ask for help. It's not something I ever did before in my life. But when it got to a point when I couldn't get out -- I couldn't grocery shop, I didn't have time to cook, I couldn't walk the dog -- and I started asking friends. When people would say "let me know if you need anything" -- I'd say: "Well, thank you -- yes I do need a lot of help right now. I'm always looking for people to walk the dog, sit with Chad, and run errands." That way, if their offer was sincere (and it usually is) -- they knew right then and there how they could help. And the thing is -- people want to help, but often they don't know how. You have to help guide them and in doing so -- you actually are giving them a gift. Allowing others to help you is giving them the gift of being able to help. Does that make sense? It's true.
I hope I'm not being too long-winded -- but the other thing I just feel compelled to share involves your attitude and how you communicate with your PALS. Chad really felt that every day was a gift -- and that's an amazing attitude. Sadly, as I look back now -- I realize that there were so many days that I was so tired and overwhelmed that I couldn't see the good in anything. I was crabby. Of course, we're all human and we have off days -- but it just breaks my heart now that I didn't sit down with Chad and explain to him and let him in. I was trying to tough it out on my own. I felt I couldn't complain to him because after all -- I was the healthy one. But I think we could've become closer and I would've been able to offer him more comfort if I had shared when I was feeling overwhelmed. I'm not saying you should tell your PALS that they are a burden -- but just to say "Wow, sweetie, I'm just having a bad day -- I'm really tired -- and I'm sorry if I'm a little crabby. Maybe we could talk about how we can get a little more help so that I can be as loving as I would like to be each day..." Do you know what I mean? The point is to enjoy each and every moment you have -- and don't be afraid to talk to each other. Don't be afraid to talk about death and talk about life. Let your PALS know how much they mean to you -- even on the days when you're not feeling so nice.
For all the time I spent with Chad and all the notice we had that I was going to lose him -- now -- I think of so many things I didn't say and so many things I didn't do -- and it just breaks my heart. I couldn't see it in the moment. And I wish for all fellow CALS to do it better than I did -- so if you do lose your PALS, you won't struggle as I am now....
So....remember that you're not alone -- there are others of us going through this now and who have gone through it in the past. You can feel free to email me anytime. And you HAVE to take care of yourself. I didn't do such a good job of that and Chad and I both suffered for it. That means physically and mentally. Ask for help. Often. Sometimes it comes from the most unlikely corners. And never give up hope. My goal now is to spread awareness and raise money and I believe a cure is coming soon -- as we said on our t-shirts for our team Blooming's Believers for the Walk to D'Feet A.L.S.:
We believe a cure is just around the corner.
Peace, strength and courage to you -- you are all in my prayers.
Ellen
MGM
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