I am not really positive on how much about Parkinson’s I want to know. Maybe for me to cope and handle daily issues as they come is better for me.
Today, when I went to the doctor with Al, the doctor was supposed to talk to me about the swallow test. He did check Al with his fingers, probing around the muscles of his throat, and said to me that this was another part of Parkinson’s. He could feel some flex in the throat muscles and he wanted to ask me a question, and then looked at Al.
I am sorry, that I am adding this after the fact that I blogged about it earlier, the doctor visit, but I could not write about this at the time, as it was too sensitive for me at the moment.
I asked Al if he had to use the restroom, and of course he said yes. After Al left the room, the doctor tells me that he has noticed some weakness in the throat area, but am I willing to have a tube feeder placed in Al yet.
I know what tube feeders are. They are used to help feed the body. They also make it nearly impossible to have any kind of normal life. It didn’t take me two seconds to answer the question, no. He explained to me that if the test came back positive, it would change both of our lives, because knowing the tube feeder was in the near future, from the test, and then he closed off the sentence with no ending.
For me it is a whole other chapter, a can of worms to be opened. I am not ready to deal with this yet. There are other alternatives. I don’t want to see Al’s life become useless, alive, lying in a bed, or sitting in a wheelchair, going nowhere. I can’t do it!
Now I understand that the test was not performed, and that even if it was, there was no result as of now for the test.
We talked about a product called thicket, and the doctor thought this was a good alternative for now, so Al and I stopped and picked some up on our way home. I will use it in his beverages, and it will thicken up as much as I allow it to, making it easier for him to swallow. Even as the illness progresses, you can make the drinks so thick, they can be eaten with a spoon.
For me, this is the way to go. It puts the test on hold, and allows it to slip from my mind hopefully within the next couple of days. Time is what I am borrowing, and I will borrow all that I can.
You may be asking, why don’t you just place him. I can’t, not yet. As I said earlier today I cared for others also. Do you know what it is like to give your own father a complete bath? Or to spoon feed him because he is too weak to raise his hand to his mouth? To wipe a way the tears because he is telling you at this moment he is scared he is dying? To sit one day a week for eight hours, and the two of you glance out through the windows, watching cars pass by, and then glance at each other, both realizing this blood transfusion is what is keeping him alive? To wipe your fathers bottom after he potties because he can no longer do it?
For the first time I am getting it out of me. Talking about it. The terrible pains I went through for love. I divorced easier than watching my father die. I sat for hours on the porch swing with him, in the summer, him all bundled up in a blanket, and me in a tank top, shorts and barefoot, and I made the swing go because he was too weak to make his feet work. Many times I used a feather bed from a double bed and padded a recliner, set my father in it, and placed pillows under his arms, and legs, and behind his neck, because he couldn’t take the pain of anything touching him. For the last three months, I could no longer hug or kiss my father, as he couldn’t bear the feeling of something touching him.
I took him to every doctor appointment. I talked to insurance companies on a regular basis, fighting for my dad’s rights, while the companies thought nothing of him and only thinking of money they wanted to hang on to. I checked his sugars several times a day, and gave him insulin shots three times a day, as the Prednisone, made his sugars go into the 800-900 ranges. I watched him continually lose weight, and I read the Bible to him. We prayed together, and we cried together. No one came, but maybe twice during this whole time he was ill. I think they were afraid to see him like this.
Now, I am reliving my father all over again, through my brother. I don’t have the responsibilities yet of what I had to do for my dad, but I do know, that while we were eating our supper tonight at Pizza Hut, he pottied all over himself, and this is a sign to me that things will get worse.
I took care of my dad until he died in my arms. I don’t know if I will be able to care for Al this long or not. When my love is strong and the compassion I have for life and people are even stronger, I feel I can do anything. I will watch over Al and do for him as I did for our father, and when our time is up, I will let him go.
Terry, I don’t know what to say other than you and Al are definitely in our prayers. This is indeed a difficult road the two of you are traveling, but hopefully by being able to journal in this blog you will find some comfort.
Be encouraged!
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this blogging is what keeps me going. it keeps me from breaking down in front of Al. thank you so much Stephen for reading this and saying a prayer for the two of us.
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My thoughts are with you Terry….. Thank you so much for blogging about your experiences….I understand these things and live them in my own way with my son….. “Borrowed Time” is precious time….. Stay strong. You are amazing !
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thank you so much. it is so nice when someone can read a blog and relate first hand. you understand what i am saying without questioning. i am always here if you need someone to talk to also………….hugs
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That is so lovely of you… Thank you = )
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you are welcome
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So very hard Terry, i cared for my Grandmother for 6 months before she died and held her as she died…to me at the time, she was the only one that cared about me and yet i can’t imagine the pain this brings you.
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it was time for me to get it out. it has been almost five years and i have carried this within all this time. it is painful, i will not lie, but as long as i can do it, i will continue. i will never have another chance once he is gone or placed
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i hope getting it out is a least somewhat healing for you. *hugs*
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it helps my soul feel lighter, now there is more room for Al’s problems
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i hope you sleep well tonight
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thank you. me too, because right now i am wide awake!!!! lol
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oh oh!
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Have you discussed with Al how he would feel about having someone else care for him? I know you are doing everything you can for Al and you now how much I admire you I have a reason for asking this and I am guessing you have not considered discussing this with him because he is your brother and you love him and want to care for him. Both my grandad’s required extensive nursing towards the end of their lives but you could not have found two more different opinions on who should do it. My grandma cared for her husband till the end luckily she was a trained nurse and it was lucky as he would not allow anyone else to get anywhere near him. Any suggestions of home help were shot down in tears and tantrums. My other grandad would not allow family to assist him in any way he had a neighbour who was a long time friend assist him in dressing with the home help but he refused any help from family, he saw it as something which took away from his pride as if to have to accept help from his son or grandchildren diminished him in our eyes or possibly just his own idea of self. I would suggest that have you not discussed with Al how he feels about who helps him it may be worth doing so now before he gets any worse. you have commented before he does not throw tantrums when others are assisting him obviously this has to be discussed when he is in the right mood to do so and sensitively handled but it might give you a better idea of where the line is to consider placing him into anothers care. i always say try to reverse the situation in your head so think what would you feel comfortable with Al doing for you? What things would you prefer someone else doing rather than a family member?
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it has been discussed many times between him and i, and he has gotten so upset that he ended up in a psyche unit, thinking i just don’t want him or love him. he does not like me to bathe him, so we have a shower person who does this. he doesn’t throw fits usually in front of others, as they are not his authority figure, but he told me once when i questioned him as to why he throws fits with me and not anyone else, he said because you are the boss……and if someone else took care of me i would throw fits with them. i had to laugh a little when he said this, but the fact is, who ever is in charge of his life, he places his dad in that person. he does not want to go anywhere. he screams, cries, tries to hurt himself. in some ways he is like his dad. he doesn’t want to be with strangers or to feel alone. he is sometimes like a little boy throwing a temper tantrum in a man’s body. it is hard for the two of us, but i know where he stands. he wants to die in his own room with the tv on, and so as long as i can take care of him, i will try, because there will never be another chance once he is gone or placed
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I had a feeling you had not told us everything about Al’s appointment, and I can understand why. I know when I was taking care of my mom when she was dieing of colon cancer, I had those same moments when I needed time to process what I was being told by the doctors, same with my father-in-law except usually with him it was just until my husband got home and we could talk it through. But with mom, none of the family wanted to hear the bad stuff, not even dad. Here you are doing it all by yourself, and because of it you are mourning the loss of your dad again. My heart really goes out to you, and my prayers.
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you have been able to learn a lot about me through my writings, if you suspected i left something out. sometimes i would give anything to be a toughie girl. just shrug everything off like they do, but i am not that person at all. tonight i am hurting, and there is no one around, and i sure wish there was, but i will be alright once again. thank you from the bottom of my heart for being a dear friend to me. it means so much to me
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Maybe there was a reason, God gave me things to handle that made me return to the computer now. He knew you needed someone to talk it out with. I see in you a person not much different than myself…kindred hearts, even though you have more experience in the nursing area then I do. But I know when I’m writing and not giving the full situation because I’m still trying to process it, and I saw that in your writing too. Kindred Souls…brought together by God to encourage one another.
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i am so lucky to have u as a friend
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Praying with you, Angel Terry. Crying some too, because you have already done something like this before . ..so hard. And here you are again with Al. Asking Him to give you strength, comfort and peace for each day. love you!
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God bless you Debbie, for being here for Al and me……..hugs
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Terry,
You and I have talked before. Momma had an appointment today as well, I find that funny (ok, so I have sick humor), I understand what you are going through. Momma had the G-tube inserted the day before Christmas eve. She failed her swallow test, not once but twice. Parkinson’s attacks muscles that you would never even think of. Momma does have the capability to swallow IF her meds have kicked in. The biggest thing for us is aspiration. I’ve followed your blog and I understand that the doctor will not give Al PD med’s due to other problems. But please, Momma is on a G-tube and she does not lay in bed all day, nor is her life any different other than she gets her meds and food through a tube. She talks, walks, and while she is incontinent at times, for the majority she is just like you and me, other than she has a nasty disease, that sometimes robs her of the ability to talk, and be semi normal. If you ever want to just talk, please let me know. This is a very scary time. I understand that, I pray everyday for you and AL and other’s that I know. It kinda floored me when the Doctor told Momma and us, ever so casually, “I see you were diagnosed in 2003,” Uhm…that’s 9 years.
Terry, hang in there, while this may bring up a lot of emotions in you, and stuff you might not have truly dealt with at the time it happened, I have one thing that I say to myself, that I will give to you, and it brings me a lot of strength.
“God brought me to it, God will bring me through it”
There is a reason you are doing what you are doing. Our’s is not to question, but to accept and deal. Cuz, personally, I never would have made it this far, if I didn’t believe that.
Sorry to have written so much, but HUGS to you Terry!
Camsgranny
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i love it when you write to me. i wish i was told that information about the g-tube. i was told the opposite. i don’t know if this would affect his heart or something else for the dr to have said this, so glad to know there is truth in other places. i do miss having someone to talk to, i admit it. it gets lonely having all this inside of me and no release except on here…………please stop by anytime
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Terry, I have been very fortunate in my life and have never had the experiences that you share on this blog. I can’t help but feel awe at the things you accomplish daily. I don’t believe most of us could handle things as well as you do. Al is lucky to have an angel taking care of him. Bless you and Al and may you find a bit of peace in your daily challenges. 🙂
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thank you Smile! i think i get used to it. does that make any sense? if Al is ever placed or worse, I wonder what i will consume my time with. i guess what i am saying is these busy challenging days are a normal part of my life now, but friday i get four hours to myself!!!
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So glad you will have Friday! Do something fun. 🙂
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I’m so sorry Terry!!! I remember when I first came down with the M.S., I had a really hard time swallowing, to the point of choking on my food a few times enough to scare the crap out of us 😦 It’s no fun, that’s for sure, when you have trouble with your swallowing. It’s such a basic thing that we take for granted until we can’t do it! Blessings on you both!!! love and hugs, Terri
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thanks Terri, tonight for his snack i put the thickit in his drink, and he did much better. he told me to use it again
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i have chosen you to receive the ten commandments award Terri!
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Thank you Terry!! I’ll be over to see it in a minute! xxxx
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Very difficult for me to find words of comfort but please know I am always at the end of an email for you Terry. My husband’s swallowing problems began a good year ago and he drools constantly because of it but no feeding tube as yet. He is also incontinent so it is hard to take him out anywhere. I really feel for you – you are such a hero! Juliexxx
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this is about the third time he has pottied in his pants. the other two times was quite awhile ago. i was surprised when i saw it once again. i get so frustrated Julie, I think i am ahead of the game and along comes something to show me i can’t beat it. Al is so close to his plate when eating now, what he eats comes back out, much drooling, messy lips and spilling food. still i can say nothing, as it is not his fault. to think even for a moment that this disease could go on for years, makes me sick at heart. what could god possibly want him and Ants to gain from this
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I don’t know what to say. You are both in my prayers.
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just being here is words enough Tilly. Thank you
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Praying….
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thanks Ed
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Terry,
My thoughts are with you.
Every decision like the one you describe is another kick in the gut. And there are no good answers.
I went through similar experiences with both my parents – Dad, with Alzheimer’s and Mom with congestive heart failure. Mom lived with me when she was sick. We finally had to put Dad in an assisted living facility, but had to constantly check on his care.
Hugs and prayers to you… Thanks for visiting.
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thank you for this kind comment. and nice to meet you. decisions become so difficult, when it is our loved ones. our hearts pull as much as our thoughts
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It’s amazing how things can trigger what we’ve seen or felt in the past. I know how this goes. Sending a prayer your way today, Terry. A prayer that you will find peace in your walk, which is leading you to care for Al and that you will find new strength every day. And remember, ALL things work together for the good of those who love God. (Romans 8:28) 🙂
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thank you for reminding me Brian, that all things work together. i can’t figure out why god is so good and so loving, and yet he allows illnesses to go on for long periods of time, instead of healing in his own way
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i have chosen you to receive the ten commandments award Brian!
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Thank you very much Terry!
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When we were handling my grandmother’s care earlier this year, it was hard for all of us. None of us ever expected that she would ever become that sick, or that the illness would take so much from her. She was reduced to us feeding her and taking care of her hygiene, and I don’t think she liked it very much, she had always been very dependent- she had even worked upto the two days before she finally had herself admitted to a hospital to see what was wrong. Gradually it grew to the extent where the pain was more than her pride and I think she stopped fighting against the illness. I do understand how you feel having to deal with this, maybe I’ve never felt the pain in the same way, but to some extent I get it. As long as you can care for Al, without hurting your own health to a dangerous extent, I know that you will keep doing this, and I’ll be here to listen to each moment of everyday, and to pray about it for both of you. Take care Terry <3<3<3
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thank you my dear friend. knowing you are here beside me is such a comfort and blessing for me. you have spent so much of your time talking to me, helping me through this. words can not express my gratitude
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Thank you for the sweet compliments. I’m sure if my mother heard, she wouldn’t be believe that both of you were talking about the same Kadeen 😀
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your mother has seen u your entire life, i know you through your words, and i feel like i know the true Kadeen, and i am so fortunate to have met you
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The Lord has certainly called you, and prepared you, for your ministry of caring for Al. There is no doubt about that. After caring for your father, I believe it has prepared you for what you are going through now with Al. You have more wisdom and you are able to make better decisions for Al after what you have gone through with your Dad. Although, in some ways it is harder for you, in many ways I can see the Lord’s hand as He leads you through this very difficult time. He is with you and will continue ot enable you every step of the way. Al is VERY blessed to have a sister like you. Lord bless. I continue to pray, as always.
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Woman, it never ends for you – just more and more and more added on to your plate. This with feeding tube – would set me of completely – know nothing about it and to be honest I don’t think I would like to know. Feel so sorry for Al and even more for you if you have to do it. Sorry, but … what a shitty quality of life – for your both.
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the tube feeder would be inserted through the skin into the stomach and he would be fed liquids only. i will fight this for as long as possible. i don’t want him to have to go through this at all!!
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Okay .. seen that on the hospital …looked very upsetting – understand that you don’t want to go down road .. let’s come to that when needed so.
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exactly my thoughts……..
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i bet you love potatoes just like me! so i am giving you the hot potato award!
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You are just such amazing soul, every time I read your stories I am speechless. The love, the devotion, the heart… what an inspiration you are! Lady, you have a heart of gold and balls of steel. Thank God for you. Big hugs :-))
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thank you so much. this means the world to me. i enjoy reading your blogs also. you present a lot of good information
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You are welcome and thank YOU, hugs 🙂
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When it’s a loved one you are hearing about as the Doctor’s are telling you what is here and what will come…and you are the decision maker and implementor…it is so hard…and takes it’s toll on your own being…I usually see circumstances dictating what has to be done…and I believe you will to…and that’s all we can do!…Just have faith in your own judgement…it doesn’t seem anyone else has earned the right to have a say in anything about Al’s care or circumstances…but, you have definitely earned it!…You’ve stayed true to yourself…and what your Mom and Dad would love for you to do…Not many take on such burdens any more…even for loved ones…You should be praised…and never, ever have a guilty thought…because YOU HAVE DONE WELL…I can hear God saying that…Listen and you will too!…~mkg
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i could give you a hug right now for this wonderful comment. thank you so much Marilyn……bless you
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You are doing a great job and you are a strong, loving, compassionate soul. Al is in the best hands.
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thank you for these wonderful words. i try to do my best along with God’s help
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Serious memories of your Dad and his needs and care. I’m sure you wonder how much more Al can take and you also. All I can say is that God blessed you with a very special heart to be able to care for your loved ones like you did and are doing. Your strength is amazing. God sees and knows what is and what will be….Diane
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thank you Diane. although the illnesses are different, i am constantly reminded of dad again as i deal with brother, not always happy times, but i know that God has placed me here once again for his reasons
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i have chosen you to receive the ten commandments award Diane!!
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Thanks Terry for thinking of me……Diane
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i always think of you. you are a wonderful person! and you are welcome.
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After much hardship comes twice the ease, but really such hardships makes the ease look impossible. Hold on for just one more day. And each day, hold on for just one more hour. And each hour, hold onto just one more second. Hugssss to youuu
Pink.
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thank you for this motivation, my dear friend Pink!!!! i am so trying
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