Improving Tuesday


Well, well, well, Friday, Saturday, Sunday, Monday and today is improving Tuesday. Yes, Al is more aware and awake. He has eaten for me all day. He plans on going to Day Program tomorrow which means I can get some fresh air and go to the grocery store.

He is still very weak, he continues to have his treacherous tremors but his spirit is brighter. He has sat in his recliner two different times for short periods.

I am sighing a long breath of stale air where I had been hanging on to every breath I took wondering what was coming next.

It looks like we are on an up swing and I don’t care how long it last as long as he is content each moment. When the bad day comes again, I can look back at Improving Tuesday.

We do have a bigger problem though since he is definitely weaker. This is not a temporary thing. The new weakness is here to stay, partly due to the illness, and partly due to the increase of pain medications.

Come here, come real close, I want to ask you a gentle question. Do you have a weak stomach? If you do you may not want to read further, but if you can take it can I discuss the word POOP with you?

I have your permission? You can handle it? Alright then, here is the situation. Have you ever sat for minutes waiting, reading your magazines, smoking a cigarette, more waiting and nothing happens on the Big John?constipation-3

You read some more, you relax, you push until your eyes bug out and your face looks sunburned. Eventually you score, victory is yours. You smile, you won, another battle is over.

Well for Al those muscles that you and I use don’t work anymore. He takes all sorts of medicines to help but help doesn’t come.

Now that he is weaker those muscles are weaker also. He is also hard to stand for the Day Program people too because of  his weakness.

The terrible thing about M.S.A. is that his mind is in tact. He knows it is wrong to do the deed in his brief so he is fighting it. I have been speaking to him on and off all day about how it may be time for him to go in his brief because his body can’t make the trip to the toilet.

He cries and says he will stink. Of course I pipe  up and say absolutely not. You just say that you need to be changed right now and who ever is with you will run to the bathroom faster than you can say Monkey’s Uncle.

He didn’t think that was funny, but seriously friends, his body can’t get to the bathroom. It is a transfer from bed to wheelchair to toilet to a sitting down position. Then the physical work of making pudding pops, then standing back up transferring to his wheelchair and back into bed.

For a tired body and a weak heart that is a lot of work. Even today Al sitting in his recliner twice for short periods you would have thought he had just carried a bundle of firewood, he was breathing that heavy.

This is one battle that I and the nurses and Day Program have to win in order for Al not to  have another big heart attack.

Alright, that wasn’t too bad of talk was it? Are you sick to your stomach? Should I excuse you so you can leave?

On the bright side a friend of mine sent me the Teddy Bear today. It is the M.S.A. bear that I put on my blogs a lot. It is a sign of hope for a cure so people don’t have to suffer like Al does.M.S.A. logoM.S.A. coverM.S.A badge

31 thoughts on “Improving Tuesday

  1. Dear Terry,
    For months I took care of my bedridden mother as she lay dying from cancer, and I dealt with diapers and messes. She was such a private person, so reserved. I just told her, I LOVE you, and that’s all that matters–none of the rest counts for anything. My heart goes out to you both–I know what you are doing, and how physically and emotionally exhausting it is. You are a hero.

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    • Yes, you do know what I am going through. It is ten times worse being a caregiver for your own family member. With Al’s mentality he only understands that it is wrong to go in his pants. He has taken so many different aids to help him go and plenty of prescription strength, but nothing. He has two issues against him. He doesn’t have a Sphincter muscle and the M.S.A causes great constipation. Sometimes he has luck with a suppository but he refuses at this point to let me do the process. Other times nurses just have to take care of it for him. Sad situation, one we don’t expect with an illness. Thank you for commenting and the very nice compliment

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  2. Don’t worry, we all poop!

    Poor Al though, it seems so unfair. However it is a trade off I guess, accept the brief and have more time and strength for day programme?

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    • I think it is Al’s mentality. He sees it as wrong to go in your pants. We went through this when he pottied in his brief. He was having so many accidents we had to start using briefs. He would know he went but it was too late, a mess. Now for some reason the other part is much more embarrassing to him but we have to do what we have to do. I choose like you do, day program over weakness

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  3. Terry, nothing you said or say can bother me, lol, been there, seen it, have seen much worse, so no, I have no problems with that one 🙂 The weakness is a tough one, and you are right, Al’s poop muscles aren’t willing to respond and there’s nothing any of us can do about that one….they also don’t give any warning, or a VERY short warning time if at all 🙂 Tell your brother that its not Al doing that, its his body — not him. I certainly have one story about that for the record books, but won’t publish it here, lol….

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    • hey, you can email me that story, I love all stories about care givers and the hell we go through. haha. Al has no sphincter muscle, this is his big issue, and of course the M.S.A. is the next big problem. With Al’s mentality all he sees is it is wrong to poop the pants, although he pees the pants. He will have to give in though, sometimes he gets lucky with a suppository, other times the nurses have to empty him out themselves. I do tell Al it is not him, but he doesn’t understand

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  4. No matter what, look at improving Tuesday. Look back at the good days where I have said “remember these” and remember them. And I didn’t mind you talking about that 🙂

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      • I am kind of a weird creature. i don’t know if you are anything like me or not in real life but I am sort of a loner. I love my facebook and WP friends, but in private life I am just me. I don’t wear make-up very often. I love sweatshirts and pants in the winter. I love my camera and Al and of course my kids. I love to write. I don’t like much noise. I like to be needed. I love nature. I stay to myself pretty much. I am sort of boring I guess as I don’t party, nor drink, no drugs. I am just me

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  5. Does he have a commode that could be placed at his bedside which would be closer to him then getting him to the restroom? If not Hospice or a medical supply place should have one that insurance would cover or a doctor to write a script for one to get one from them. When it gets nearer and nearer the only thing we can do is make them as comfortable as possible. If he is having issues using those muscles a doctor prescribed something called miralax I think that is how it is spelled to me once it is a powder but tasteless and you can put it in any kind of drink. Same like benefiber or metamusil. That could help him clean it all out without a lot of straining to try. I am not sure what size bedpans there are or if they make them that size for when heavy duty pottying arises. Just some ideas. My husband also said there are braces that you can wear while lifting him so you do not strain your back or hurt yourself so badly if needed. Something to ask Hospice about as well. It should not require a visit just a phone call or even ask them about some places that you could get certain equipment from that his insurance would cover or that is not too costly or free of charge while you need it. There was a company that brought a huge Oxygen unit and tanks and a chair for him at no cost to us and they just came and retrieved it once he passed. I don’t mean for that to sound heartless or cold in any way. Meant no harm. Hospice should be able to give you some resources if they can not give you more help. I know with Hospice it is all volunteer work for the most part and sometimes they have to give more time to others above some due to how close they are to the end. I am sorry it is taking it’s toll on you sweety. It is never easy. And a lot of the time you feel all alone I know. But we are here for you and I may not be there to help you but I am here and will do anything I can for you if needed or wanted. Take care of yourself too. I hope he feels well enough to go tomorrow so you can get another break. Love ya and take care my friend 🙂

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    • I sure wish I knew who I was speaking to, but anyways, Al won’t go in the commode. I don’t know why. I think he is scared. He has taken all kinds of tablets, drinks to help. He takes several prescription strength aids but he has two things against him. One, he has no sphincter muscle, so he doesn’t know when he has to go. Two, M.S.A. causes huge, huge issues with constipation. Sometimes Al gets relief from the help of a suppository, other times the nurse has to do her job and help him. It is so sad to watch, but in the end he is going to have to do what we need him to do or he will be more ill than what he is. Hugs my friend

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  6. As Mike Rowe from “Dirty Jobs” once said “We know POO” and we as caregivers certainly know all about it. Bob has very severe POH and so going to the toilet was very hard. He would pass out and I would lift him up and place him on the floor, then put him back on the toilet when he revived. Sometimes this would happen 5 or 6 times just to get a little poo. Now we have a Hoyer lift and he takes Miralax. He doesn’t pass out in the lift and along with gravity and enemas we have “POO!”

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    • My brother has taken Miralax, M.O.M. several prescription strength aids, but he has no sphincter muscle and along with M.S.A. he can’t go. It is sad. Many times the nurse has to physically help him rid it. I am glad it works for Bob!!!

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      • All you have said, Dewayne went through. The one difference is he did have dementia and was cooperative, not realizing that this was not the norm. With Al’s reluctance, he may reject this; but we put Depends on Dewayne all the time. He got used to that being the norm for him, and he was easier to clean up.

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  7. I do have a weak stomach but this did not bother me as I know it is with love and relief of stress for you. I know how bad you need to get out tomorrow but is Al really strong enough to go to Day Care? Just wondering if it will really be beneficial for him or will you have more to worry about and do when he gets home,considering how he has been on previous occasions. Is there no one to sit with him for an hour or two while you go out? I wish I lived close darn it!

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    • I understand exactly where you are coming from. This has nothing to do with me. Of course I would like to go the grocery store, but,,,,I leave it to Al. He has been able to tell me when he doesn’t want to go and he will tell me when he can go. You are right, it makes him weaker when he goes, but then I have to look at his quality of life, not quantity of life. Laying in a bed 24/7 is not quality. I would rather see him live less time and a better quality than have him here more time. He is sad that he is missing out, he hates his pain, but when he goes to day program, for a few short hours he doesn’t think about how sick he is, and this is what is important to me. Hugs my friend

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  8. It is more to it than we always think, so don’t worry telling us about more things you and Al deal with. We get more of hte picture and how hard it is for both of you! It is still good to go to the day programme for Al to have a bit of variety.

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  9. Terry, I admire your strength and courage. Know that I am here for you as a best friend, if you ever want to talk. As we go through life, we find that we are doing things we never even thought about. But, we do what we have to do because we have to. And, that is what makes us people of God. You and Al will be rewarded in heaven. It may be poop here on earth but it will be cupcakes in heaven.

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  10. God, please bless Al and Terry. Please provide healing for Al’s body and peace of mind for him during this difficult time, also peace and strength for Terry as she cares for him.

    Thinking about you, friend and as always I will say, it is inspiring to see the love you have for your brother. Be well.

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