That One Smile From Al

The days just keep getting worse. Al surprised us with another big mess when he awoke. I guess I shouldn’t be shocked any longer, this is now three days in a row. You know what I am talking about. The brown package, and no, it isn’t delivered in the mail.

Al is getting a little mean. He told the shower girl and caregiver to get out of his room. He told everyone who visited with him that they just come and leave; that no one stays. He moaned a lot in pain. He didn’t sleep today much.

I have made many comments about Al’s medicines. I feel like I should spend a few minutes talking about them. I am sure it is no secret that Al is on the stronger medications. But with Al, he has brain damage, so medications do not do the job they are intended to do. Instead any of those feel-good meds make him wired and wide-awake.

He can cuss and scream, stay awake, be hateful. Many types of medications have been tried with success until you start giving higher doses. Al seems to do fine with a new prescription. Then it happens; he becomes immune quickly and the physicians raise the dose. This is when everything goes hay-wire and we are back at the blackboard again.

The nurses are frustrated and no one seems to know what to do next. Meanwhile I have this sick guy in pain. There has to be a medication somewhere in the middle. If you have ideas or want to talk to me about any of this topic, you can find me at    I am also on Facebook.

He was finally given an irrigation with a numbing agent in it for his tissue tear. I hope this works as he has complained of a stinging feeling. He says he hurts all over. It just really rips my heart apart and I find myself looking to the heavens and asking, ” Why, why wait?”

This evening it is quiet. The nurse has gone home. The caregiver has left. Her two bosses were here today and they are gone, and now Al is sleeping. For how long I do not know, but I am grateful. Asleep means feeling no pain.

He cries to me, ” How do I get to heaven? I can’t get there. I feel like I am in jail. Why is God not answering me?” He states many times he wants to die. I can’t say that I blame him. If I felt like he did and was in a bed 24/7 I may want to die also.  We fight sores on his body from him laying there so much.

He eats a few bites at meals. He takes very little water, and yet he remains to suffer. Hospice mentioned that maybe one reason Al didn’t sleep today is because there were too many people here.

Maybe she has a point, I am not sure. I will change things around the next time there are more than one person here. One visitor at a time. If the Hospice nurse is here, then there will be her and me or the caregiver and no one else.

Bathing will have to go back to two bathing. If there is something to this; I will do what I can to help make things calmer for him. I am sure visitors will understand. Al tries to talk but gets frustrated. This causes tremors to speed-up and then leads to tears and anger.

Maybe what Al  needs now is peace. He hates any light. He says he can’t see very well anymore. Maybe his peace will be more darkness with the light of the TV on and one visitor per room for a few minutes.

I have decided to test this starting tonight. I will take good care of him and then tell him I love him. I will wait to see if he ask for anything and then I will leave the room. I never wanted Al to feel like I didn’t care. I am sure that is the way others feel also.

Guilt for myself can be a heavy load. Satisfying my own needs of making Al feel this way or that may actually be doing more harm than good. So I will try to limit the amount of time. I know that I fed him some yogurt for supper. I gave him his medications and a syringe full of water. I told him I loved him. I waited for him to say anything, then I left the room. I just got up and checked on him and he is sleeping.

Heaven from what I have heard is a peaceful setting and maybe I and anyone who visits can help him to get this wonderful feeling right here in his own room. The Pastor dropped by earlier and made a comment to Al that brought that one smile to Al’s face. He said, ” Al, one of these days you won’t be looking at all your cars in their boxes. You will be driving them.” Al brought a tear to his eye but there was that one smile.


25 thoughts on “That One Smile From Al

  1. I love the thought that the pastor knows him well enough to tell him the line about driving his cars. So sweet and a way to bring a little ray of sunshine into his thought pattern. Bless you both, we are all praying and looking forward to that day when the good Lord will finally give you both peace and comfort.


  2. Terry, I know you love your brother and want what’s best for him, and that is a good thing. However, my friend, you are not responsible for how Al feels. You cannot make him feel better, and when he is having a bad day, it isn’t a reflection on you. He feels bad because his body is breaking down and dying, and it hurts. You are only responsible for loving him, which you do, and for doing the best you can, which you are already doing. But don’t carry a load of guilt for those things that you are not responsible for. MSA is the one responsible for the way Al feels, not you, and it’s important for you to remember this as you continue to pray for Al and care for him.

    I pray that the Lord will continue to carry you as you go through this. He is not a God of guilt and shame. That comes from the devil, so don’t feel guilty about what you can’t help.

    Much love to you,


    • Cheryl, my dear friend. You are so special. You always say what I need to hear. You have the right words at the right time. Thank you so much for being my friend


  3. The last nine days of my mom’s life, her pain was so intense that my sister agreed to put her on morphine. Mom had already stipulated no heroic measures, so they basically just kept her hydrated via IV, and let her sleep. It was very peaceful. As she was actively dying, she never woke up. My sister said she literally watched the light go out of my mom’s eyes, and that was it. I think you’re on to something–too much activity, too much company will keep him agitated and struggling. He wants to go, he’s ready to go. Make his passing as stress-free and pain-free as possible. I wish I had an answer for the awful messes. I’m praying for you all the time, Terry.


    • I so wish Al could use Morphine. He can but the doses have to be so small. I am glad you think I may be on to something with all the company. You are such a comfort to me


  4. Sending more thoughts and prayers and when that mean spirit comes flowing out of his mouth, remember it is not him.
    It is his illness and I do not know the reason why he is still here but there is always a reason.
    I continue to pray for ease of passage for him and strength and comfort for you.
    When he is gone, smile and know he knew your love right til the end as you did everything you humanly could to keep him comfortable.


  5. Terry, I think a lot of the issues with meds are actually due to the fact that MSA causes massive dysfunction of the autonomic nervous system (ANS). We have ANS issues with my syndrome: EDS, as well, and I have problems with most medications and things like opiates do nothing for my pain and also make me very sick. This is not normal, of course, but it is normal for those of us with this issue. Unfortunately, the ANS is rather complicated and not much can be done when it’s not operating correctly. 😦

    You are right that it can cause vision problems–this would be from a neurological cause–and Al could very well be having light sensitivity as well, so keeping things dim is a good idea and might help a lot. Not sleeping is an issue with chronic pain, a faulty ANS, and so forth and something I struggle with, as well. Well, I’m nowhere near where Al is, but just thought I’d share some things I know (that you might already know).

    I so wish Al didn’t have to keep suffering like he does. And don’t assume he’s angry with you–it just goes along with the disease, unfortunately. Even if you can’t see it anymore, you have to know that Al would be so much worse without your loving care.

    Keep hanging in there and sending love and hugs…
    A xoxo


      • No worries! I had to become my own doctor with time, so I do LOTS of medical research in dry journals online.

        Al’s doctor (presume a neuro.) should know all that, but MSA is rare and I know you’re not in a big city which never helps.

        Hugs xx


  6. I just wished that Al is not in pain and can go peacefully … driving his cars as the pastor said…it is good he is coming from time to time too. Terry still praying for you!


  7. I know it seems like you are not strong enough, but you are, and you show it in hundreds of large and small ways. The prayers and thoughts are still coming your way. I’ve been busier than usual, but I never stop holding the two of you in prayer.


  8. I’m checking in…with working …I am limited on my time I spend on the computer…I miss it…but, also think it’s a good thing…I was geting quite obsessed!…Love to you both…and Thanks!…for sharing…I want to keep up with both of you!


Leave a Reply

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.