Update About Al


I have had a few calls in the past couple of days from nurses that care for Al. It seems that his gentle attitude towards authority has taken a different path. It bothers me but I refuse to believe that it is anything lmore than Parkinson’s Disease changing him. Al could pull the wool over my eyes pretty easily, but one thing he never did to me was yell at me.

Now I am hearing he is telling the nurses off and has little if any patience when it comes to his needs. His pains are becoming increasingly more and more present. The pain medications that he has been taking are no longer working.

His family doctor has fought very hard to not give Al any stronger medications. He is already on the strongest pain medications the pharmacies carry, but he can go up in dosage amounts. The reason the doctor fights it is to keep Al walking.

He and I have a different view on this. The doctor looks at it from a medical stand point. Walk walk, keep strong, keep independent.

I look at it as it is sister and compassionate human being. There comes a  point where you reach the end of the road as far as pain goes. It is supposed to get worse. It can not get better. Al has had so much therapy on his legs and knees he is worn down. The bakers cyst that is attached to the back bone of his knee is causing him pain also. Two different specialists told me and Al that he is to stay off of his legs. They refuse to operate and take the cyst off because the therapy to heal from the surgery is far more than Al can physically handle.

Now the therapy department looks at Al from a Parkinson’s view. Keep him walking. Well, I am slightly confused, because in two months of being in the facility, Al can barely walk. I am not saying it is all of the therapy that was pushed on Al. Everyone thought they were doing what was best for Al.

Al is a fighter and yet he is losing. He will because of his lack of mentality walk with every effort he can muster so he rides in the wheel chair less and less, but it is killing him faster and faster pushing him into a wheel chair or bed.

Now after too many reports given to me, I have been informed and asked my opinion on the nurses getting a hold of the doctor and demanding he give Al an increase of his medications.

I can only look at this one way. He is my baby brother. He is in so much pain. He is now having trouble swallowing. He states that it feels like something is stuck in his throat all of the time. The neuro  doctor thinks his throat muscle is becoming weak. His speaking has turned from individual words to one big rambling. Nurses and me are all having trouble understanding him.

It is a fact that he is in pain. It is a fact that he will not improve. I have voted for the increase of his dosages on his pain medications versus the pain level he is suffering through. I would rather have my brother in a wheel chair than suffering to the point he is telling the nurses off from so much agitation of getting no relief.

This was a very difficult decision for me to make, but I look at Al as his heart and neuro doctors do. Palliative care, comfort no more big goals for improvement. I just want him to be calm and happy as he and I walk through this journey.

Am I wrong? Am I being selfish? Maybe you think so, but I love him, and I hate seeing him suffer for something that will not get better. I don’t know how long God will keep him here, but I don’t want him to hurt on his journey to heaven.al at millers

72 thoughts on “Update About Al

    • I was afraid to write this tonight, afraid of the negative remarks. I love my brother so much I just want his suffering to be as little as possible. The dosage increase can very well take the last of his energy, but the agitation from suffering to me is worse. thank you for commenting and being here with me

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    • If Al was a quitter and wasn’t trying maybe I would think differently, but he has given his all. he walks so so so slow to not be in the wheel chair. his body is about two to three feet a way from the handle bars of the walker. It is an accident waiting to happen. he will fall flat on his face and lord only knows the damages he will suffer from a face down fall. thank u for understanding my point, as i am a sister and not a doctor

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  1. Terry, sweetheart, you are neither wrong nor selfish. One of the residents I used to care for had Parkinsons, crippling arthritis *and* an arm that was paralysed but still had feeling. We had to use a standing hoist on him and he would be in so much pain that he would scream, swear and even cry. He always apologised, but we all understood that he was only reacting to what I can only describe as pure agony and whoever was getting him up/bathing him/putting him to bed always told him that he had nothing to apologise for.

    You say you’d rather see your brother in a wheelchair than being pushed to his physical limits, and THAT IS OKAY. You are doing right by him.

    Much love to you, dear friend xx

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    • i hate it when i get negative comments so i was really sort of afraid to blog about this new update. I love him and want him to have some kind of peace. as I said in an above comment, he walks so terribly slow with his walker. he is walking with a two to three foot distance between him and his walker. it is an accident waiting to happen. face down first. oh my gosh, the thoughts going through my head at the damages that could cost his head over whelms me. thank u for understanding a sister’s view

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      • I can understand. Remember, I always have your back – because I’ve seen what Al is going through first-hand and I wish that some of my residents had been lucky enough to have family like you xx

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  2. You and him are not selfish, with what Parkinson’s does, it is better to be comfortable, than suffer. Sometimes it is hard for us to understand that the Independence that the PD person fights so hard for, sometimes is better off giving in, if only to make them more comfortable. It is not one they will give up lightly. I feel for you and Al, the journey is not an easy one, and any highlights, are memories cherished., the bad times too, Take it as it is…You are a good sister for helping him on his journey, and it is truly both of your journey’s. Peace be with you Terry, and Al.

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    • I needed you to very much understand where me as a sister and not a doctor was coming from. with his distance being so far apart from his body and the walker, he is going to fall head first, and the thoughts of damages his head can occur gives me the shivers. i want him safe and calm as much as possible, even if it means giving up walking

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    • the nurse faxed the doctor today so things should start to change for him tomorrow. it breaks my heart that the little bit of strength he has will be taken a way by the increase of medicines but to be in less pain is a bigger victory to me than walking. thank you for understanding a sister’s view Julie

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  3. Terry,I totally agree with you. The question is what is the end goal. As you said, he won’t get better and walk easily again. The goal is to make his life comfortable, not to cure him. Thus increasing his medications would seem a good idea to help him live more comfortably. Don’t judge yourself too harshly. There are no easy answers — just difficult choices. Talk to Al and ask him about it if you think he can understand the issue. Good luck as you deal with these difficult issues day by day.

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    • I guess Al has been bugging the nurses to call the doctors for more pain pills so I think he sort of gets it, pain pills equals less pain. i m glad he can understand to a point, but i won’t talk to him about what could happen by maybe not walking cuz all he can see is the minute usually not the hour

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  4. I am so sorry for your difficult days and decisions…do you have access to hospice care in the facility where he is? The hospice team was a lifesaver for me in my mom’s last four months, and Medicare covered all of it. I don’t know if they could help out where you live, but they helped me through really tough decisions and have continued their support for me even after Mom died this past April. Very helpful. Just a thought.

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    • to tell you the truth, I don’t know. i know they help if he is at home, but when he is in the nursing home, I am not sure. If Al gets to the point that he can do nothing, i want him to come home. to be surrounded by all of his coca cola and his own room is what I hope that he would wish. then I know hospice would help. I can check into it Sheila. thanks for the idea!

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  5. Terry ..I agree totally with your decision…. At the point Al is in with his health and his pain…walking is the least important in my opinion…What is the point of trying to walk when he is in so much pain he won’t want to do anything….Diane

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    • that’s the way I see it. he may sleep more with the increase, but he already sleeps so much, what is a little more, and when he is sleeping he is not in pain. thanks for understanding

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  6. Your a wonderful sister and anyone that follows you would know that! 🙂
    No body wants to see anyone suffer and therefore you’ve done the best thing you can for Al.
    I say, “Go Coke,to Al” ………..Paula x

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  7. Terry, it breaks my heart to hear about Al’s progressive symptoms. You are such a blessing to Al, and I imagine it must be so difficult not to feel that you are making things measurably better for him. But you are doing more for him than you will ever know. xo
    LUanne

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    • you have no idea how your words touched my heart. it is very difficult with this decision. i used the emotional scales and weighed the facts. i could be wrong but i still see him being more comfortable this morning even after i slept on it all night

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  8. where to start? you have to be the one to advocate for al as you say. i have 2 thoughts i would like to share with you, first- can you ask for a meeting of all relevant staff and get a real treatment plan? if all his providers get together then there could be a consensus of how to move forward. the second is just to say that it is archaic yet there are some drs who think it is wrong to medicate as the patient may become addicted. of course addiction is the last thing to worry about here but you may need to get a new doctor to see a change. palliative care is the best as they will do both things seamlessly. so if you can be enrolled please do. they are about living your last days with dignity. they will get a treatment plan and support you in making changes if you need to.

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    • palliative care is what he is supposed to have been on for a while now. i want him to walk, this is a fact, but at what gain or loss will he walk? the doctors and i had an agreement for this type care before he entered the nursing facility but once he was placed there, it became make him stronger, and now he is struggling to walk. it is so hard for me to sit and watch him suffer

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      • i am so sorry you are put in this position. all you can do is keep advocating for him. i know it seems natural to want him to be stronger but the reality is he is getting weaker and that is natural. sending you a big hug!

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    • it is difficult. i just want what’s best for Al, but knowing that you think I am doing the right thing makes it a bit better. Good morning Ute. Thanks so much for commenting

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  9. Terry, I’m so sorry. I think you did good to increase the medication. I would have too. I remember when my grandfather was suffering from cancer in his final state, they gave him a low dose of morfine, but that didn’t work. I was really angry with the docters, because I couldn’t see him having so much pain and I wanted to put all the suppositories inside of him to release him from his pain. Finally the docter prescribe a higher dose, so that he didn’t feel any pain anymore. I’m glad Al has somebody around him, who can make the right descisions. I wish you all the best, Terry!

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    • Good morning Angel. I am so moved my your comment. I feel like you truly understand my thinking on this. It has been difficult to watch him suffer for something that can never be fixed. thank you so much Angel for responding. big hugs for you from me

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  10. Terry, no one can judge you and what you have to do now, with Al and for Al. You know best! I have to make decisions too, with my daughter, and it’s not always popular! But I know you love him and are making the right choices, that God is guiding you. love and prayers!

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    • Good morning Debbie, I have thought but not voiced on how God would look at what I am doing. From what you have said, I am going to believe that God is walking with me and approving of my ideas for Al. I only want Al to feel better. thank you so much Debbie

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  11. Terry, You are Al’s voice…I know the decisions are tough because you love him but you must stand up and make Al’s voice be heard. If you think he needs more medication then by golly they need to give it to him. The path Al is traveling right now is one we ALL must travel at some point. Keep him as comfortable as possible. You are the source of his comfort. Prayers for you….keep taking care of yourself!

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  12. I don’t envy anyone these impossible choices. Having confronted them before myself I only know that the best I had to offer was my intentions, that I loved those on whose behalf I had to make those choices for. If I tried to hold myself to making the correct choices in all those cases I would have been lost in more suffering that my loved ones would never have wished on me. All that to say, your love for your brother shines through all of this, stand up for your brother the best way you know how and that’s it. A doctor’s role is to present options, not to dictate courses of action. If you feel pressure like that from the doctor you do not have to be embarrassed or conflicted to assert what you know is best for your brother. Your brother is very lucky to have you for a sister.

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    • Thank you so much Wisdom. It has been terrible for me to look at Al only what is best for him without wanting to take my love for him as a sister and add to it. They did increase the pain medications. it will start tonight at bedtime. I hope that he can still walk for his sake but I will accept if he can not as well. I just want what is going to bring comfort to him

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  13. I’m sending my heartfelt love your way. Never doubt your decision, it will only make your concerns seem more of a task. You have done the right thing, so please don’t beat yourself up about it. And above all, don’t worry what others may think, they’re not the ones going through this terrible time, you are. Al is lucky to have such a loving, caring sister. xxx

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  14. Because Al is alive, it shows he’s not a quitter. As a loving and compassionate sister, Terry, of course you want to help ease the pain. He relies on you to help him, dear friend. And you do! xoxoM

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    • thank you so much Margarita for seeing my point of view. some say the only smart ones are the doctors, but I am smart plus thinking of Al’s daily living skills. the pain has become too unbearable and he needed help. The increase of medications starts tonight at his bedtime

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  15. You are doing the right thing in my eyes…and being that the decision is on your shoulders…you have to do what you think is best for Al…and I know for sure…you think things through…
    talk to all and their concerns…decipher through it…and make the choice…What more could anyone ask…mkg

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    • I have to share something with you Marilyn. Staff has been on Al’s case because he has too much in his room. He came up with this clever idea that worked. He asked me to go home and take a picture of the hat you sent him, and then print it off so he could show it to his friends. I took it in today and I saw him sharing it with others. he was talking about how rare it was, and how it was made in another country. he was just beaming with pride. He was telling nurses, dining room staff. it was so cute. you will never know how much that hat means to him

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  16. Terry it is a hard decision, but you have to go with your heart. His best interest is what is in your heart and like everyone here I think you are making the right decision. Hugs to you dear friend! Patty

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  17. I think you are incredible, and that it would have been more of the selfish move to simply keep him alive to alleviate one’s own guilt. Thus, you are choosing the best path of ease for him by allowing him the chance to meet God, as really, this is the best comfort in a world where one suffers. Let God guide you to what is easiest, not what is most difficult. To what is best for him, not others opinions. Hugsssss

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  18. Terry, I apologize for being so far behind in reading my e-mail, but I have just now read your post. I am so sorry to hear of Al’s increased pain, and, like all the others here, I agree that he needs a higher dose to make him as comfortable as possible. What point is there in keeping him mobile if the pain is so great he can’t move because of that? I’m not one to recommend drugs for the most part, but I believe in Al’s case it is absolutely necessary. I pray that the Lord will wrap Himself around you now and over the next days and weeks so you feel Him close to you. Yes, He is leading you and will continue to do so for the good of both you and Al. The Lord has promised to give us His wisdom if we but ask, and you have asked. So you must believe He is giving it to you. God bless you and Al. Hugs to you both.

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      • I’m fine, Terry. Just haven’t been on the computer much for a couple of days. Then I have so many e-mails I can’t catch up. 🙂 Yes, it may take a couple of days for the increased medication to kick in. I pray that it will work well and that Al will have less suffering.

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  19. You are his sister and you want him to be comfortable, there is nothing selfish in that… all I see is a whole lot of love and care. I am sorry its not going to get better. Al is lucky he has you to watch out for him.

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    • I wish I could make it better, but there is no cure, but I can make sure he is watched over, and not taken advantage of and be there with him. thank you for this very nice comment Arman

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