Which Way Is Up With Al?


Saturday was a nice calm day for Al and me. I was a little surprised that he didn’t ask for any pain medications, but didn’t push it. Today, I woke him up so he could take his meds and he sat in his lift chair most of the morning. He didn’t even take a nap, like usual.

After lunch it started to change. He started complaining of pain in his side and his neck. He didn’t want to lay down and then it got too late to lay down as the shower girl was to be here at 2pm.

She had a terrible time with him as he was going back to his old ways of being crabby. He couldn’t hold his head up normal and he was so weak he could barely stand. After his shower I put him to bed immediately.

He only slept an hour and was back a wake.  For supper he couldn’t feed himself because he was too weak to hold his spoon and his tremors were a mess. After I got him all cleaned up and had just put him in his lift chair the phone rang. It was the beautician ready to come cut Al’s hair.

I knew it was shitty timing but getting her to come out on her days she did work was too hard. She came out and gave him a cut. She is good and she was quick. After paying her and she left I wanted to put Al in bed to watch TV but he insisted on his lift chair.

He then argued with me because he wants his bed side table full of cars. I offered to exchange cars but he wanted his way. I couldn’t give in. We need the space for his glasses at night, his remotes, light, bell, and he already has three cars sitting there.

He started crying trying to get his way, then he got mad. I sit here now thinking he has complained of neck pain and side pain. He is dead tired. His body is too weak to even help himself stand all because he turned down the pain medications.

I think he should have them anyways. It keeps everything under control. It helps stop the pain before it gets out of hand. It helps him to not get so upset and fussy. Now I have a brother who is refusing to lay down until bedtime and is at his worst.

I think he is trying to prove to himself that he doesn’t have his illness now that he is home, but he is wrong. We talked for quite a while and he said, “This illness is going to take my life. It is going to kill me.”

I hated it but I said, “You are probably right. This illness will get no better. It is going to make you weaker and eventually you may not be able to get out of bed. You need more rest so your body can sit up and eat. You need to take your pain medications so you don’t get to this point.”

He started crying and I had nothing else to say as I didn’t want to start the arguing again like last time he was here, so I left the room and got on the computer. Should I have ignored his saying no to pain medications or given him the pain medications anyways?

Here are some photos I snapped today in our home.

Al on SundayRhino being lazycaiden and AlAl and haircut

65 thoughts on “Which Way Is Up With Al?

    • It sure can and he is proof of this. He is on Hospice so his life quality is not good anymore. To keep the pain a way or very low he needs these medications

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  1. Terry why don’t you try crushing the meds into a dessert or something that he will/can eat so that he gets the pain relief. By no means do I say I know his pain but I know with the knee replacement pain if I don’t take the pain med at the correct time it will escalate to an almost unbearable amount of pain so it is importanant to maintain a consistent level.

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    • I know you are right, but I guess I will have to ask the Hospice nurse tomorrow to see Al’s rights. I just wish he would say yes. I understand his motive but it is hurting him

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  2. I know recently that when I wasn’t given my pain meds on schedule while in hospital the pain was uncontrollable for the whole night… Maybe you could explain that this is what happens …A schedule is important… ? Diane

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    • He definitely needs to take his pills on his schedule. What I don’t know is his human rights. I need to speak to his Hospice nurse tomorrow. He doesn’t need to suffer like he is right now

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  3. Should you have confirmed what he already knew? If you didn’t then, you would probably would have faced the same decision again and again. He knows the truth, he knew when he asked, he just wanted your confirmation. Now you can both get past it and go on. You did the right thing Terry, don’t beat yourself up. So many times when people try to deceive themselves and those they care for, it makes a wedge between them. God bless you Terry!

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  4. Hello Terry,
    Firstly I would like to thank you for the pingback to my blog FullCircledMe, You might know me from my comments on Julie’s blog as Lady Barefoot Baroness. I am sincerely honored that you found my Looking Back post relevant to your brother’s life. And yours by proxy.
    I am a bit familiar with your trials as a caretaker from your amazing and supportive comments on Julie’s blog, I pray that you are not offended when I speak so personal.
    I feel compelled to write.

    Your question if you should give Al his pain medication anyway is one of the most compassionate inquires I have ever read or heard asked by a caretaker.
    I am just a layperson but one with now almost 30 years of living with chronic pain. I am blessed in that I am able again to function fairly normal. But it is living through chemistry that allows me this. And not any chemistry. It took about 12 yrs to find the right medication for me. Then about 4 years to adjust to living on narcotic pain meds. I even consider my life pretty wonderful now. A lot to be said about quality of life.

    I think that going without pain medication for someone with moderate to severe intractable pain can be even dangerous. When my pain is not managed well my blood pressure spikes dramatically, and my heart rate increases. I suspect so does your brothers. When medication is short acting, IE: every 4 hours the blood life of the medication is only about 2.5 to 3 hours. This means by the time the 4 hours is up the level of medicine has detoxed from the body and the pain increases again. It is a constant yo-yo effect. Exacerbating an already inflamed pain cycle and pattern.
    When doses are skipped for what ever reason it makes it impossible to manage the pain. Creating a host of other symptoms and side effects which you are witnessing by your brothers behavior and moods.

    My first suggestion would be to chat with Al and see if you are able to discern why he chooses to skip his pain medication.
    The reason I suggest this is because there may be reasons that you will able to be address.. It could be he doesn’t like the feeling of being sedated all the time from the medications.. If this is the case speak to his physician, there are options available so that a person can be fairly comfortable. Pain managed. (being pain free is probably not a feasible expectation even with meds as I am sure you know)

    There are a whole host of side effects that can deter someone from wanting to be complaint with their pain medication. It is just as important as high blood pressure medicine but sadly our society has given chronic pain and those who are inflicted a bad name. Maybe even Al feels he needs to be stoic and suffer instead of accepting medication as not only appropriate, but okay.

    I hope you forgive my novel here. I am much passionate about the treatment of chronic pain. And adore caretakers who really have an earnest interest in their loved ones comfort. You are my hero today ~ BB

    Thanks again for the pingback.

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    • You are very welcome. You have also brought up some valued points about his heart racing, which number one is a high priority risk here at home for him. He struggles with high BP constantly. I will talk to him more and I am also meeting with the Hospice nurse in a bit. I will discuss this also. I didn’t know exactly what Al’s rights as a person are as far as being able to refuse medications, but I do know that he and I suffered most of the evening last night. Arguing, crying, anger, and confusion along with pain in neck etc did not make a nice Sunday. I will make sure that he is as comfortable as possible. It is sad that he has so strong of pains that he is on some pretty heavy duty pain meds, but from my view, I would rather see him a little sleepy than crying and frustrated. I loved that you commented and hope to gain a friendship with you.

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      • Looking forward Terry very much to building a friendship with you so very much.

        My continued thoughts:
        Al would have a right to refuse medications, treatments, even water & food here in the US. Sad but true. It must be a priority though for our caretakers to be considered too.
        I am able to relate to your Sunday from days in my own experience. I have a vivid memory of standing at the kitchen sink trying to do dishes one evening. In tears because I was in so much pain, could barely see the dishwater for the pain in my head was blazing. But I refused to let someone or something to help me. I had skipped a med dose because at the time I thought studying more important .I still see my two daughters & the pain in their own eyes from seeing me in such a state.

        My point is that when you live in chronic pain the loss of control in our lives is so great we start hanging to where we think we still have some say. Sometimes hanging on to even that control can hurt us & those who we love.It is the hardest lesson to learn. I think it is survival mode kicking in.

        My wish would be that Al realize how exhausting this is for the person he needs most in his life. His sister. That he recognize the need to even now find some sense of an even keel to be on, as best as he can. I wish for him to see the need for your own well-being to be considered.
        Sometimes when we are so ill we forget.

        Gentle hugs to you today Terry. You are an amazing strong person. I love to surround myself with people like you. Be kind to yourself today. ~

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      • Although we are new friends, I feel like I have known you forever. I want to share an award with you. It is the Loyal Reader Award. Enjoy this my friend

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      • Hi my new friend, I had the opportunity to talk to the Hospice nurse today and she explained because Al is mentally challenged to go ahead and give him one of his milder pain medications along with his other medications. He wears a constant pain patch so this will be added help for him. When and if he complains than I can add the better pain pills for him. It brings me sadness and relief. Sadness because it makes him sleepy and not quite himself, but relief because although he doesn’t see it, I can see the relief he will have and the pain will be less. Thank you for telling me some of your life. Pain is a big thing when it is chronic. This is where my brother is and I am glad for friends like you and Hospice

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      • Thank you Terry so much for the award, Thank you so much for the sweetness in your words about feeling like we have known another always. I felt the same when i read your post which let me speak so freely with you.
        You just are a smile maker Terry!

        You just make my heart glad for the compassionate person you are. I realize now that you have even a more unique set of trials than most. Bless your heart Terry.
        I adore your hospice nurse already/ Sound advice from someone who is educated not just in medicine but ethics as well. Outstanding!
        This will help manage an a more even and stable environment for his body which in turn is a great boost emotionally.
        Chronic pain just like chronic illness is a family disease.

        Your brother is so lucky to have you, and so are we this community. Thanks for all you shared. I hope we continue to build on this friendship, I look forward to it.
        I hope to have my award posted this next day or to Thanks again.

        Gentle hugs My new friend ~

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      • Enjoy your award my friend. I look forward to our chats. I already know that you are a special person and have come into my life at the perfect moment. I hope you have a wonderful day!!! hugs

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  5. Ah, there is a cat in the picture again … I have read about him. Nice to see some pictures from your day too – even if Al isn’t to his best.
    I think if he doesn’t want the painkillers … don’t give it to him, after all it’s his body and his pain. If he gets pain if not taking them and create problems that way .. you can point that out next time he refuse them. I personal think that we should have the right to say no to our medicine if .. we feel for it. Look at my mom she had hidden hers the last morning at home, for me .. the nurse found them under her pillow when the ambulance staff lifted her to the stretcher … for going to hospital. That was the best indication she could give me that .. she wanted to die and I didn’t have any right to keep from leaving, the hospital only made it more comfortable and the process went a bit quicker. I think if I had kept her at home, her struggle would have been much longer and she wanted so badly to leave.

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    • For Al being mentally challenged I am still allowed to give him some of his milder pain medications. Hospice believes that he is not able to make good judgement decisions when it comes to some things including his pain. He wants to go back to when he was not sick, but we know this is not possible. This is where the decision plays to see him suffer in order to try to go back in time or help him

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    • My dearest friend, you know how much you mean to me. Therefore, I want to share an award with you called The Loyal Reader Award. I hope you accept and enjoy.

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  6. Can his meds be embedded in food or drink so that he is unaware that he is ingesting them? I know that not all meds can be delivered that way… but maybe the doctor will have a suggestion?

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    • his medications are put into applesauce. Some can’t be crushed or wet. I am going to be talking to the Hospice nurse in a bout an hour to find out what my next step it

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  7. Terry, I know I’ve not commented much in the last six months, but I have read evety single post. And I’m praying for you. Al is on our prayer list at church. I have grieved with you. I know you are facing uncertain and uneasy times. I don’t know how long Al has but God has blessed him because he is with you now. I will be a lot more active. You will get through this. What does not kill us, makes us stronger. Hugs to you and Al. Sandy (from LBTK)

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    • Sandy, it is so nice to see and talk to you again. I hope you are well and all is alright in your life. I am doing the best I can with the resources I have. Al is difficult to take care of, this is a fact, but because I love him and know he is defenseless I work harder to keep him comfortable. I definitely am stronger than I used to be. I have to be or I would drown

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      • I just had to unplug for awhile and to get myself on the right path again. I lost three friends who were really close to me in the first three months of this year. I began to doubt. So I removed myself from social media almost entirely. It was a good thing. I have my head on straight again and it feels good. I know you are stronger. You will continue to be stronger and stronger. I just want you to know that I’m never more than a few keystrokes away. I love you and if you will send me your address (freshpaint04@aol.com) I have something I’d like to send to Al. I know how he loves to get mail. My children’s choir at church is working on a project for him. They are furiously making cards and encouraging the adults in our church to do the same. I’m going to give them a few more weeks and then I want to send them all in a big package. Sandy

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      • you are a beautiful person. I am so sorry to hear of your loss of friends, but I am so proud of you for recognizing that you needed to make a change in order to heal. I will email you my address. Bless you and big hugs Sandy. I am so glad to have you back in my life once again.

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  8. Terry, it is a sensitive question. One I asked in the end with Vic when I had to decide whether to sedate her or not. Barefoot Baroness’ comment is sound. With pain, once it breaks through, it is very difficult to get it under control again. His quality of life will improve with Hospice if he allows them to medicate him… Al is not fully able to make his own decisions any more. Good luck dear friend!

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    • the nurse said go ahead and give him the pain pill in his medications. I am giving him one of lesser strength, saving the stronger ones for higher pain. Along with his pain patch he should feel better. He came home in pain today so I gave him one with supper meds

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  9. Hi Terry, is so little that I can say compare with all the other comments but I can tell you this, open your heart to the one in power above you, ask them to guide you through this difficult time, you soon will be seen the signs. Keep you and Al in my prayers.

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      • you are most welcome, it is a heavy mission on your shoulders, you should look every single little help and if the power above can help, why not ask for it!!!

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      • you are definitely right!!!! I am getting more help than I used to but God can provide much more if I ask more often

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  10. It is very hard and Al is trying so hard for you. You don’t know what is the right way and you don’t know how much pain he can endure without medication. One thing is for sure. Your love for him never hurts him and he needs a lot which you can give freely. Keep your strength up Terry!
    Love the pictures, so we see more from you 2!

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  11. Don’t have an answer to your question but just wanted to stop by to tell you that I think you are an amazingly patient person. That you manage to keep your patience through all this is nothing short of a daily miracle. I hope you take it easy on yourself too. I know its easy to forget to do that. You and Al are in my prayers.

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    • Thanks so much Arman. The only thing I am lacking is sleep. Al won’t go to sleep until after midnite and I wait for this so I can go to bed but have to be back up at 7, so I feel tired a lot, but I keep going!

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