What We Think We Know

You have heard the saying before, I am sure, that if you have not experienced it, you don’t know what I am talking about? I think this refers to me last night. Al is slowing down so quickly. I see him struggle to get out of the car or off the couch. Our bodies, when we want to move, we just “get er done”! When Al wants to  move, it takes much time to get the brain to tell the body part what to do, then the brain has to register what the movement is, and then the body tries very hard to do the action. Let me tell you, with great pride and stubbornness, it can be done, but it can take several minutes to make one action complete!

Here is a good example at our home. We go to the grocery store to get the much-needed foods, mainly getting Al’s desires. As I don’t want him to lose anymore weight, I give into his fantasies of his taste buds. I pay for the groceries, and I load them into the car, and I have this done while I am waiting for Al to still get into the front seat. We drive home, and I get out of the car, and unlock the house, and carry in all the groceries, and still wait for Al to get out of the seat.

Can you picture now how long it takes the brain and the body to join together in thought and get moving? The frustrations that he feels, the humilites that follow him when others are present. I truly believe that this is the major reason that Al gets so nervous and stressed out when we are in public. He is overly concerned about what others are saying, although I do believe that most do not pay attention to him, it is Al who pays attention to his own self. He forgets how to use the levers on the scooter and ends up crying, making me wish we would not have went out.

Then you have the other side of the quarter. Al wants to continue to go to outings, and wants to live like he no longer had Parkinson’s. You know within your heart, it is going to not be a happy experience for him, but you can not take a way the desires  he has, just because you know the better part of the outcome.

I took Al to a car show this past weekend, and he did fairly well. We took his scooter, and it was held under the open skies, so there were no boundaries for him to bump into. I have had to change myself, in the way that I was brought up. Don’t talk to strangers, don’t interrupt another person’s conversation. Don’t be a loud mouth. Use your manners we taught you. When I stuck the key in to give power to the scooter, I also gave power to let Al be Al. He smiled immediately, for one he was going to look at antique cars but the most important thing, I believe he smiled about was freedom.

This freedom gave him power, power that he used to have to make decisions for himself. He went to each car, and looked it over. Every single person he saw, he scooted his way to them, and started carrying on conversations as if he and they were old-time buddies. He was having a grand time. It was not a huge car show, so I stayed in the background with people who I knew, and just kept both eyes on him.

It warmed my heart, and I even over looked the people who wondered what he was all about and who was this person coming their way. He finally did come back, his lips were quivering, his body filled with so much sweat from the work of making the scooter go. This was a lot of decisions for him. Who was he going to talk to , what was he going to say, which way was he going to make the scooter go.

He was very tired and he wanted to go home. He could not get out of the scooter because he had used up all of his energy on his journey of independence. He needed help to also get into the car, but in his eyes, and also mine, it was worth every second to see him having time to be who he used to be.

This is what you lose when you gain Parkinson’s. A huge part of your personality and what you represent here on earth as a whole.  The whole life of a Parkinson’s patient turns into a live nightmare, as you continue to try to live and breathe air.

Last night before we retired to our bedrooms, I saw him struggling so hard to get off of the couch, that I walked over and for one of those few times, I did offer to help him get up. He had been struggling long enough, that he didn’t hesitate my offer. When he finally worked his body to the edge of the couch, he held out his hand for me to help get him in the standing position. I gave him a gently tug, and he came up.

Without me living what he is living, I can not fully understand the body he lives in, and I automatically let loose of him once he was standing. I only think I know what he is going through, other wise, I would not have let go, and for this mistake he didn’t stop moving, he tumbled on over, once I stood him up. I felt so bad for my mistake and kicked my own butt for not thinking. I caught him before he hit the floor, and I apologized to him for having the strength of THE HULK, hoping to get a laugh or smile out of him, but it didn’t work. When I looked into his eyes, I saw fear, fear of being out of control and fear of wondering where he was going to be landing.

I am trying harder now to realize I don’t know Parkinson’s. I only google it, listen to doctor’s words, and watch Al. I am not going to beat myself up for this lack of thought process, but I did learn to be more cautious, and realize I can not know what others are living or thinking, until I have lived it myself also.

We reach our hearts out

And offer our help to

Be a friend and lend a hand

Only finding out that we are

Nothing but grains of sand

In this vast world and land

But we must be loving

And children of God

We continue our work

To  show that we care

To allow them to live and be willing to dare

To live and to love and to be

Course of impulses between the brain and the body

Course of impulses between the brain and the body (Photo credit: Wikipedia)

who they are

We can not dismiss them as the weak and the sick

For it could be us, walking on the end of that stick.


28 thoughts on “What We Think We Know

  1. When I help my husband get up, I have him grasp my elbow and I grasp his (instead of just the hand). That way I don’t have to exert so much force to help him up and, once up, I’m standing closer to him while he eases into his balance. By the way, my husband is a survivor of multiple strokes. Not the same as Parkinson’s…still, neurological issues. All the best!


    • and if my mind was in my medical mode i would have done so also the same as you, but my mind was in a brother sister mode, having a good evening together with no problems, and so i did it wrong


      • Terry, we all forget…it happens. Focus on the wonderful time you had…accentuate the positive: you’re a wonderful, loving sister. No more beating up on yourself, please.


  2. You punish yourself the way I punished myself before the nursing home decision for Anthony. Come on, Terry – please don’t exhaust yourself any longer. This post is so eloquent about how it is for you and Al and it gives anyone who is not familiar with PD some great insights but it is also heartbreaking because it is easy to see who is suffering more – you are, not Al. I hope you don’t mind me saying this you beautiful, amazing person! Juliexxxx


    • i don’t mind you saying my friend because no one else sees me as a beautiful person. they think i am hanging on to Al for my own reasons. hard to explain, but not true. i care for him because he is my brother, and i know my time is nearing the end as i can no longer continue to be his caergiver……thanks for caring Julie


  3. Terry, please listen to Julia and me …. don’t give up your life. Don’t feel guilty for arrange another kind of living for him, you have given so much to Al by love and care, but you have obligations to yourself too.


  4. Thanks for posting this. My dad passed away almost 4 years ago from pneumonia, a complication of the Parkinson’s he had endured for 5 years. By the time he died, he was so frustrated and depressed by his illness that he became uncooperative with anyone giving him care. Being a nurse, and experienced with Parkinson’s patients, dad and I often knocked heads as I tried to be both his daughter and a nurse to him. But his obstinence was his final act of independence against a disease that robbed him of his body. It’s heartbreaking just writing this. God bless you and Al.


    • thank you for writing 8 kids………i have been in the medical field for many years and this is how i am able to still care for Al. the biggest thing for me is slowness. i want to get up and move and i have to have patience. when this is 24/7, it is nerve wracking. he is struggling to eat and ask me for help more and more. he wants to do but he is too weak. Al is mainly depressed also, with lots of tears and anger. i tell myself when he can no longer walk it is over. i will have to place him. my problem is no one will be blunt enough to tell me what to expect from here on out. i really want to know so i am prepared. i need to know the truth. right now he struggles to walk, eat, and sometimes forgets what he wants to say or is starting to get mixed up on dates and names. he needs lots of help with his walking and can barely use his scooter, as he leans too far forward from being weak. last nite when he toppled after i helped him to stand, i realized just how weak he is. it scares me, but what else is there going to be…………


      • Dad wasn’t placed in a nursing home. We managed to keep him at home until he developed pneumonia. When he was admitted to hospital because of the pneumonia, he deteriorated very quickly and passed away 2 weeks later. When I had to consent to stop treatment and place him in palliative care, the doctor sat me down and said, “Terry, now you have to stop being a nurse and start being his daughter.” That broke my heart because I knew then that there was nothing left to do. So, Terry, I’m telling you,
        “Terry, at some point, you have to stop being the medical person and start being his sister.” Frightening, I know. God bless you and Al. It will be OK.


      • thank you my friend. going through this with my brother brings back the fresh memories of losing my dad four years ago. this is when i started to care for my brother. i took care of my dad for one year and he died in my arms. i had to watch him fight bone cancer, but i remained his caregiver but more a daughter, who still is broken hearted. i believe that because my brother had his heart attack one week after burying dad, i have never grieved for dad. he was my idol, and i love my brother also, and it is all coming back again, scooters, walkers, so much help that we give them to live as normal life as they can. once again i will have to give up


  5. Terry,
    everyone makes mistakes, don’t beat yourself up about it. YOU are a beautiful person. I see that in your care of Al, and your friendship. Someone who has never dealt with this horrible disease is getting an insight to how it is, through your blog. There does come a day however, that when you are no longer able to be his “Caregiver”, then you can just be his sister. Hope that makes sense?


    • it does, but what will happen that will not allow me to be his caregiver? please tell me, i need to know, if you want to email please do. i deserve to know these stages. all i know is he is in the latter parts of fourth stage


  6. Terry, you have no reason to beat yourself at all! When the time comes that you have to make other arrangements, please believe that you did all you could and NO GUILT!!!!!
    God bless you!


    • how do you let your brother go? how do you let your guilt slide away, knowing if you tried just a little harder. who will take care of him as lovingly as i do………….


      • But isn’t it love that makes you get the best possible care for him? When that is no longer you, what else can you do? That does not mean you don’t love him, it just means someone else might can take care of him a little bit better or at least without wrecking their own health. Trust God to let you know what is best for Al.


      • you just opened my eyes to a whole new view Barb. I guess i never looked at it like this. thank you so much for this comment. i appreciated it. do you know how terrific you are!!!


    • do you remember when we were elementary children and we walked the long pole, balancing with our arms, swinging back and forth and laughing out loud, and if we fell, we just got back up and tried again. this is how my life is today, but the laughter is not there much anymore. i don’t know why god has me going through this, but it has to be for a good reason, but i used to be full of laughs and i do need that once in a while like today was, but more……………..selfish? not really, just wanting a part of me again. i love my brother and would not offer his care to any stranger as of yet. i just have this gut feeling that i will know,,,,,,,,when it is over and i must turn him over to strangers, and this is what keeps me fighting and going forth, knowing that one day he will be in someone else’s care. it is scary to me. i know that there are very fine caregivers in nursing homes, but i also know that the special attention he gets here will not be the same else where. too many patients and not enough helping hands……..why am i rambling on? i have no idea…………


  7. Terry, people can advise you what to do, but in the end you have to hear from the Lord what He wants you to do. You will know when you have to relinquish Al either to a care facility or right into the arms of the Lord. Only God knows what and when the end will be and as you put your trust in Him, He will comfort and strengthen you to carry on. I pray that He will bring little things into your life every day that will give you reason to laugh and smile. I know it’s hard to see the funny side of things when things are tough. Sometimes we just have to laugh at ourselves or remember funny things that happened in the past. I once stepped backwards off the platform at church, and every time I thought about it for the next 6 months I would start to laugh. It still makes me smile to picture it. It was such a silly thing to happen.


    • you know, i keep telling myself this, i will know, and i believe u and i are right. people care about us and they do not want us to suffer. they want us to have a life also, and i get this, but there is time for me, but now is the time for Al. thank you for the wonderful comment…………


  8. Hey, we’re all learning things every day Terry…or at least we should be 🙂 Sounds like you’re picking up new things all the time and that’s great. You continue to be such a strong person for Al and that is what counts. Let the doctors be the experts – just keep learning as you go. Have a good day!


  9. Terry, My prayers continue. I went through trials caring for my elderly father before he passed away. At times it was difficult, but nothing like what you are going through.

    I definately do understand the issues with guilt and feeling as if you should try just a bit harder.

    Based upon my experience and also counseling others, if it is the Lord’s will for you to turn Al’s care over to another, He will let you know. For many, when they begin to realize that their loved one will be better off with more intensive care than they can give, it is then that they realize they have done all they can. It helps them to realize they are not hurting their loved one but helping them by placing them in another care situation.

    Once again, all I can say is it is your decision and you will have to live with it. That is why it is so important you make up your own mind. By doing this you can have true peace no matter what may take place as the result of your decision. You can know that you have done all you can and you are only helping Al by getting other help.

    Lord bless you dear friend.


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