This afternoon was a real blast! I don’t remember when I have had so much fun! As the Golden Girls eldest lady says, Picture This! I am sitting here in my computer chair checking emails, and my son texts me to ask if I am home. I respond back with a yes. Pretty soon he comes down and he is ready to work on my bathroom floor. I am having new tiles laid down. I have hated the floor all the time I have lived here. It is yellow plaids and reminds me of a kitchen floor, maybe used from some other floor in another house, and it was a piece left over, so they slapped it down. So as he is starting to do this job, Al is yelling in the bathroom, and I hear the familiar sounds of plunging the stool. Oh, no, not another time.This is at least a weekly ordeal that we go through. My brother was born without a Sphincter Muscle. For you that do not know what this is, it is a muscle in your body that lets you know with a signal that you have to use the bathroom. Number 2?? I can remember the trials and tribulations all through out my childhood, of perfect timing after dinner hour, sit until you drop it! I know, I hear giggles here. Mom and dad did succeed with this timing each night. Now that he is a grown man, he doesn’t want to listen to me, and so there is no perfect timing. I have tried prunes,and raisins. One time I tried apple juice, but that was a mess for me, so I didn’t try that anymore. So the son is here, that doesn’t want to hear any voices raised, and Al is in his bathroom raising his voice. While my son was in my bathroom, I was in Al’s bathroom, and we were taking turns using the plunger. If Al works at the plunger for over five minutes, he becomes very weak and the sweat is pouring off of his face and body. I had spent too much time in the living room talking to son before checking out my brother, and walked into a soaked bathroom floor, rugs wet, you know what everywhere. I couldn’t say a word. I didn’t want to upset my brother and cause more anger, and I didn’t want my son to get mad and walk out, room unfinished. My brother was on a rant and rave. Yelling at me that no one cares about him, no one cares about his problems. I am not quite sure why I get so mad when he talks like this, yes, I do. I get mad because I get sick of hearing no one cares. Who am I? What am I doing here? Aren’t I the one that does everything for you? I let him ramble on and once I took over he went and sat in his room. I finished the job, started the load of dirty towels and rugs, mopped the floor and cleaned the sink and toilet. After this was all done, I had a pounding headache. I get these if I hurt my neck by straining it at all, from some arthritis in my neck. I hate these headaches. It usually forces me on the couch for a nap, which is where I am headed after finishing this blog. I know it is late afternoon, but supper is in the crock pot, and Al is taking a late nap. He will be up at his usual time though, because this is his schedule and we don’t change it. After starting the laundry, the son tells me we don’t have enough tiles, so now tomorrow I get to go back to the store for one more box! Yipee! He left and I went and explained to my brother that I was going to give him a shower even if it wasn’t his shower day. All through the shower, I was rewashing tears and snot. I had more soap on me in the end I think, but he was clean and in clean clothes. Whew! I am now exhausted and ready for the day to be over. Right before writing this down, I called a nursing home here in town and talked to them about a two-day respite care for Al. I can’ do it anymore without a break, just two days. They will call in the morning, because as usual, the person I needed to talk to was gone for the day. Alright, wasn’t this a blast to follow this blog today? Did you picture it?
I foundd your blog through Bird and she is right you are one hell of an amazing lady. I so get the no one cares bit we recently moved my gran to where my parents live as her mental health has started deteriorating her favourite is she doesn’t see anyone. This meaning the friends she used to have most of whom stopped visiting her or passed years ago. Me, my daughter, my mum and my siblings who she previously only saw a couple of times a year due to distance now ensure she has at least one of us visit every day only to discover we are nobody.
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it hurts doesn’t it? i was never taught in my teen years that families can all be different. that just the word, family, doesn’t entitle us to anything special. i could place my brother, but my profession shows me over and over with his issues, and being mentally challenged, he will get cared for last, so i keep him home with me as long as possible. glad to meet you Paula! always love nice people. sometimes they are better than family!
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way to go with nursing home respite!!!! how is the new care aid working out?
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she has been here once and did alright. she is to be here tomorrow so i am hoping she will show up
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good!
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I pictured it. You are an amazing woman .
I think respite care is a wonderful suggestion. It was one of the comments that I rewrote and wiped, because I don’t know how it works there. Here it is a wonderful thing for both parties usually, as the carer gets a break and so does the ‘patient’ for want of a better word. It is treated as a holiday where ever possible. Good luck.
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when we lived in florida, respite care was everywhere, but here……..nothing, just nursing homes, and private pay only, so it has to be when i am so emotionally drained that i consider this
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I imagine it is very expensive, but well worth considering.
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yes as a treat, i think so
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What a wild afternoon, I got the picture, woman you are amazing!! I am glad you are calling for respite assistance, you can use a break. Sorry I don’t live closer to you, for I could give you the much needed break.
Walk daily with God at your side!
Always,
Ed
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i would take your help too!!!
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Unfortunately, I am 1300 miles away!
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just a hop skip and a jump!!! lol
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Sounds like some of the days I have had…believe it Terry…we all do!…picturing it…is funny when not happening to you…but, just tireing when it’s your day I’m sure…Hope your floor turns out well…you need a treat!~mkg
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yes marilyn, i need a treat, day off!
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Persevere with the respite – yes!
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it does sound good rolling off of the tongue, doesn’t it??
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Anyone who is reading should most definitely be able to sympathize (not empathize unless they’ve been through it) and I for one believe that not only for your sake and sanity but for Al’s also the 2 day respite sounds not only reasonable but necessary…..Diane
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i think you are right Diane, I so need a break, it has been months since i have had time for me and him time from me
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I’ve been in your shoes, and am walking them still, and YES, you do need a respite, because it will help you, and maybe even Al. Thanks for a wonderful blog, I’m glad Jule brought me here!
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it is so nice to meet you my new friend. are you a caregiver or taking care of a family member?
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yes, I take care of my Mother in Stage 5 Park at home.
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i have asked our doctors and searched online to see what stage my brother is in. maybe u can enlighten me? he has severe tremors in all body parts. his legs buckle when he stands. he can not stand for very long, very unsteady when he walks, cries all the time, gets confused. he can walk for about five minutes then is tired. he needs help when walking most of the time. i keep thinking he must be in stage four. he can sometimes choke on his foods, his head is almost in his plate, as to try not to spill his food
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Terry, can you send me your e-mail address?
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It sounds like stage 4, be very careful about the choking thing, as it is common for P patients to choke on their food, Momma has a stomach tube and is fed directly into her tummy, as she could not pass the videoa swallow test. This was found out when she aspirated in the hospital. Try therapy for the walking, I can give you some tips, but it’s hard work. The tremors will eventually semi-stop and then comes the “freezing”. Every patient is different.
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two weeks ago he started the freezing. he will try to go and his feet won’t move. one day last week he got up from sitting and his feet would not move, he was trying so hard, that he was starting to fall forward. it took my son, who was here at the time and me to hang on to him as he struggled to move. after about five minutes of working and struggling his legs finally followed. is this still stage four or starting stage five? he gulps his food it seems, with his head in his plate. it is like he is trying to hurry the eating process so he can get the meal over with. he chokes more on liquids than solid food, as i have changed our foods, especially meats that he can chew and swallow easier. so what do u think now?
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email address
tellmenolies2004@yahoo.com
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I think the respite sounds like a blessing! Praying for it to work out for you sooooon! Especially after today! hang in there! love and prayers!
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thanks Debbie
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I can empathize with you because I have been there. My mother lived with me for nearly 5 years after breaking a hip and until about 4 days before she died. I had the plunging problem from time to time also. Although I could leave her alone and didn’t need respite care, I remember once coming home after a very long day (up at 5:30, gone by 7:00 am to work my market booth and home between 6:00 and 6:30 pm) to find she had had diarrhea and had left a trail down the hall to the bathroom instead of using the commode in her bedroom. Another time, before I had time to empty it, she knocked the full commode over at about midnight. I know it isn’t easy for you and I pray that you will get as much respite care as you need to keep your sanity and get some much needed “me” time. God bless you for your faithfulness in caring for Al.
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it is so hard to watch family get worse, and along with worse comes many side effects, including bathroom care, feeding, and dressing. your whole life changes. some say that i am so lucky to be able to stay at home. this is not a nine to five job, it is 24 hours a day, with no one offering help or a break. i am sorry you had to go through what you did, but i also know u would give the job to no one else
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Terry, I don’t understand how you manage – and you did the right thing to photo the home – you need to get your life back to some degree. You’re a fantasist woman and I feel so deeply for your situation – wish I could help more than replay on your posts.
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your replies is what keeps me going my friend
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That landed in my software – thank you so much. I’m glad you can understand my swenglish.
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I simply couldn’t do what you do, Terry. Please make sure you take care of you as well as Al. I think respite care sounds like a good plan. Good for you!
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i am hoping i can work something out Sara, even one day would make me feel much different when i got back home. thank you Sara for caring
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A two day respite for Al would be just what the Dr ordered for you!! I will be praying that this works out for you! You need some time to yourself. You are doing an amazing job with your brother and you deserve an opportunity to pamper yourself a little!!
I really hate plungers, don’t you?? So sorry you had to deal with this!!
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those plungers are the ultimate pain in the rear!!! hate the name of them, and having to use them, lol
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Isn’t it amazing how many duties you have to cover in a day, and yet here you are sharing your life with us. Thank you!! I hope you and Al have a great 2 day break, you definitely need to unwind, or you won’t be any good to yourself or Al if you’re all tired out and drained. Try not to worry while he’s away!!
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i hate it when people make me feel like i do nothing here. it is a full time job
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Yes it is! And everyone who works has to take some vacation time every now and then, especially when they work as hard you do!
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i am trying to get some place for him
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I hope you find one that you feel comfortable with. Good luck with the search!!
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thanks
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That is such a tremedous burden on you… Hope you do get a break and a regular break.
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i will be content for now with one day!!
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I think you should have your own TV show where everyone tunes in and is amazed at your strength for the daily capers you cope with. Wow. You are simply fabulous. Always remember that amongst the apple juice and pruney days. 😀
Pink.
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wow! Me? On TV? now that would be something wouldn’t it??? thank you for this wonderful comment Pink!
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I know this is easier said than done. But you could ask you brother if he would like to take Al full-time instead of you? Or at the very least he could take Al once and awhile so you could get a break. Once a month would be nice! Your brother doesn’t show signs of understand what it is like careful a convalescent full-time. He doesn’t appear to have a clue.
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he was in a rehab once for eight weeks due to a seizure. all he cared about was playing bingo and talking to nurses and shaking every strangers hand that passed by. the place that i called wanted 220.00 a day. we can not afford it, and i am also waiting for my son to say something about me getting a real job, and then i am going to ask him to do it for a day. he will say no
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I’m reply to your reply. For some reason I couldn’t send it from my site?
Well Terry then your son (I thought it was your brother, sorry) has no place to say a word to you. If you want give me his email address or phone no. I will talk to him! I have walked beside my sister for all the years she took care of her husband. I understand your side of it. Her husband is now in nursing care and it still isn’t a picnic. She still is very involved. The load is tremendous. I understand and I care about YOU. You are an angel to do what you are doing for Al. There will be many stars in your crown!
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I think I have overstepped my bounds about calling or emailing for you. I’m a bit too involved. I’m pretty sure I’m projecting my dear sister onto you. I’m sorry. Please forgive me. You’re not my sister. But I do care. You are an angel. And there will be many stars in your crown, 🙂
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you are alright. you haven’t over stepped. this blog site is for me and i don’t let my family see it, other wise i would have to be more careful of what i say. i am sure you understand this. always feel free to say as you are thinking. i appreciate your honest and i love that you care about me!
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🙂
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Thank God for your sense of humor — and your recognition that you need a respite day.
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so far i am having no luck, a nursing facility wants between 220 and 250 per day, medicare will not pay since it is not rehab for him
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Oh, I can imagine it! My father-in-law because of his Alzheimers and dementia often plugged the toilet, or missed and went on the floor…we are talking both. I don’t think people realize how tough it can be as a caregiver, yet you do it because you love someone so much that you are willing to do even the most disgusting things and clean up the most disgusting messes to make their lives better. You are an angel of mercy and love, Terry! God will bless you abundantly in Heaven!
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thank you. people do not realize all the work that one patient takes. he is freezing in his walking now, he struggles with his food staying on his eating utensils. i bought him weighted ones but now he can no longer hold them. the bathroom issue is becoming more common. i will call you and you can help me clean it up. lol!!!!!
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LOL! You sound like my daughter, Jk, who says she is going to adopt 50 children and I get to change all their diapers…lol. I think it is the one thing I don’t miss about caring for my father-in-law…lol.
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i imagine so. lol, well, i tried!!! hehe
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