The original post was:
Caring for a spouse with dementia
My husband of 47 years has stroke related dementia . As the weeks go by he seems to be more and more angry that he is not in contol of his life. He has points in time that he is lucid and happy and he loves me and talks to me about how much he knows i have to do for him but he can turn on a dime and he calls me names breaks things and yells threats at me. I tell myself its not him but his dementia, however I cant seem to stop crying and feeling anger toward him. If anyone has advice to help me get through this p[lease share with me your thoughts . I know if I wait 2 to 3 hours he will forget all that he did but how do i forget and forgive ?
Thanks Erna for the update on John and Bettye,, we are all standing together for them at the critical time.....
I am on the same page as Bettye and all of you, whatever works, in the best interest of the patient and all concerned... and most of all quality of life etc.... I do so feel for my friend... she is going through dark tunnel.. and I hope there will be a light at the end of this trek. Feel like lighting a candle in good spirit ... Took Adi out for about 1/2 hour to our FOrest Preserve (my my it's hot) made him a sandwich and gave him a Ativan... he seems to have settled down... His edginess was tugging at my nerves, hoping this will somewhat take care of the problem... Now I will wash the floors , vaccum, take a shower and I am off to a local Picnic... til later
JohnC has somehow got the Visa card and the Visa Debit card comfused in his brain,, can't seem to untangle them.... hope it will work out.... got apointment with the Internist on friday,, will tell him about reducing the dose on the Statin and Coreg until we stopped them ... this was over a period of 5 months.. hope he understands and is agreeable.. It is also Mothers and My 6 month apointments.. so I will request to go first and explain what and why.... JohnC is doing better, legs stopped swelling and leg cramps stopped,, headaches stopped,, he just feels better overall.... However he has had painful urination which lasted a few days, in this 6 month period.. his urine was checked and there was no blood or infection.. will ask doc to do a prostate exam.. PSA has always been good...
Went to see Jim. He looked good and in good spirits. Caregiver said Jim was fine yesterday afternoon and they played Jenga, etc. He never was a game player. I saw on the sign in sheet my sister's husband-they live about a half mile from us-visited Jim yesterday. That was so nice! They never stopped in before, but it was nice they made time yesterday. When I asked Jim, he sort of remembered but he didn't know where they had been. Today they are having a bar b que and the place is quite festive-flags, centerpieces, etc-lots of red white and blue. Bettye, hang in there and keep holding John's hand. He needs you so much. Shingles, ok; cancer, no.
Miserable day here. I hope this isn't the case, but I am worried that the calm of the last three weeks is changing to anger again. It's building... Earlier as I was watching TV in the office I heard him yelling - I ran to see what was wrong and he was pacing in the living room crying and furious about me hitting him in the head! This is exactly how the anger started at the daycare, but it was always "that SOB" who hit him now it's me. Got him calmed down, went back to the office and suddenly the dog came in and sat at my feet so I knew something was up again. Just as I walked into the living room I saw him throw the remote because Elvis was on... Please God, not again...
Quiet day.....got Dom to walk hallway today...wish he would do that more often. Didn't go out...too hot. Sat. is going to be 100 degrees in this area...cooler right at the beach. Gonna finish cleaning up kitchen and get ready to watch the 4th specials....hope it doesn't storm anywhere. Happy Independence Day my friends. God Bless. Love, Brenda
What a gorgeous full moon out our window tonight....orange from the humid atmosphere. Hope all is ell tonight with everyone!
Good morning all! The usual, slept ok til 5am.. all is still quiet, I am sure the bed is wet I can smell it ... I am ready with new sheet, doing as Clydia said, just change top straight sheet..Taking Adi to the Barber.. that should make his day and obsession (can I sit in the car". Getting a bit tired of this heat, staying inside too hot to be out.. today a working day.. did all my cleaning yesterday and caught up with laundry (for the time being) so tomorrow will be a feel good day. could use a manicure/pedicure and maybe lunch with Gfriend.. Saturday I have a wedding to go to... hope it works out, leaving Adi at home, will fix his dinner and meds.. after that he should be alright.... just no fun going to an event by yourself.. I guess that's the way it will be from now on .. no choice in the matter have to get used to it. Well my friends lived through another full moon (beautiful golden yellow) Adi was acting nutty, hope he will be back to himself 1/2 nutty. Peace and love... and for those in hot areas stay cool.
Just read something in a book that I am going to try to remember. " Growl all day, and you will feel dog tired at night". What wisdom! I do feel tired when I complain, guess it takes a lot of energy to be negative, and it doesnt accomplish anything! The 4th was quiet, he slept till 11after getting up at 6 with a wet bed. He did his business, I changed him and the bed and he just wanted to sleep. I got up about 7 and exercised, had quiet time for prayer, did some reading, talked with. Y daughter on phone so it was a good morning. Rest of the day pretty predictable, he napped and I ironed 8 of his dress shirts that he wears to church. I love to iron. So it was a good day.
Clydia good morning, read a long time ago, it takes more energy to be angry then to be happy... wish I cold apply that theory all the time... I hold off on ironing... til there is something good to watch on tv.. then iron for two hours. The rash is just about over... that sure was a struggle.. will get some more of the powdered prescription, in case he has a flare up. Had a thought.. each day passes good or bad we all hang in there as best as we can.. humming away at our daily chores... and days turn into weeks, months and years..being in this situation for the last ten years, the old Adi is fading away fast.. makes me sad ... but I will manage somehow come hell or high water... peace to all
Went outside last night ,,, neighbors around for about a mile were doing fireworks,, it was beautiful.... 5 years ago, my Sis, my daughter and granddaughter went to NY on the 3rd to celebrate her 16th birthday, we watched the fireworks on the river,, it was awsome... So tomorrow she will be 21 years old,, time flys... we have 10 grandchildren from 27 down to 11....no greatgrands yet....
JohnC will see the doc in the AM,, I talked with our daughter about it,, I was a little anxous about telling him that we had stoppied the Statin etc.. She explained to me that JohnCs conditional is terminal,, It cant be fixed,,and that the plan is to keep him comfortable, happy as possible,, free of pain,, and do everything we can to keep his memory for as long as we can.... and from research the Statins and Coreg seem to have an effect on memory ,so we have stopped taking it....If he did not have dementia our thoughts may be different....She ask if I wanted her to go with us,,, I said no we will be fine...
LIndasu...Wise daughter, good advice, yes some dementia can be slowed down, but the ultimate is non stop... in this household, it was slow moving the first 5years then it accelerated and now it's full speed ahead.. I guess we have to take whatever comes our way... and that is with Ad or without.. by the way our Lake front (lake Michigan) fire works are a sight to be hold.. especially with a golden full moon... til later erna
sometimes it is exhausting to have a conversation with him. what with the chronic pain and memory loss. . . sometimes he doesn't finish a sentence. He doesn't remember many things and I usually "try" to fill in the gaps and watch how I phrase things. He is very defensive about his memory problems.
Quick update can't read posts this hospital net is a mess ..... John had a low blood sugar seizure at 5am .... Bs was 17they did a code and got him back .... Doc told him eT or die... Told him if I had not been the room he would be dead right now..maybe he will retain it but I think I will have to keep telling him to eat and when he says no then I have to tell him the code that as called and the bringing him back .... Yikes I need a drink and it's only 1030 in the morning
Each stage and change has its challenges, the main thing to remember is that it is like shifting sand, it never stays the same for very long. When we are in that stage that is really hard, it is difficult to remember but we make it through, and then it is something else to deal with. Just hang on tight and hope the next stage won't be something even worse. "Creating Moments of Joy" is such a great book, am rereading it and it helps me to stay positive and centered. Some great ideas about how to communicate at all the stages.
Stay strong, Bettye! You are doing it. A major fireworks display over San Diego accidentally went of early and all at the same time last night-whoops! Sounded like a bomb. Jim's neurologist called and said he needs to increase his anti seizure meds, based on 911 incident 2 weeks ago. Is it that golden, full moon? Reminds me of last neurology appointment a year ago when she said she didn't need to see him for a year. I cried and cried and felt abandoned-except for you all. Here it is a year later and I have grown so much. She has seen him for ten years and it was always 3 or 6 mos, so the one year wait made it seem like no hope to me, but , here we are! Have to take Jim for a haircut today-he is looking like a Beatle. He only has 3 or 4 grays over each ear-no worries I guess. Be strong and stay safe.
Clydia you are the most compassionate patient person I know- keep it up.. Bettye, no encouraging words will do.. except hang in there.. we are all rooting for you... Adi had his day at the barber and a car ride... lunch and nap.. and I am off to work.. things seem to be sailing Ok for now Til later
My mom went to the Neurologist today and he said we should come in annually too. I know that there is really nothing that can help except taking her off of the incontenence medicine. That is supposed to add to her confusion. She is still on 2 .025 namenda pills and today she was really having problems with her words. It was funny. They asked her to remember 5 words, then they asked her to name for words that start with f. Then they asked her to repeat the words she was told to remember and she repeated the f words instead. That just seemed funny to me. Of course she will remember the last words in her brain. I am just taking one day at a time. Have to answer budget questions for the attorney. Not looking forward to that. I get so defensive.
Bettye, prayers and hugs to you and John, very scary, keep up your strength. Love Loretta
Hello all, gotta run, doc appointment for K today, then 3 homes after dinner.
Oh Dear Clydia,, your awsome post made me cry,, I to have been weepy in the last week... when the gas pump went out, and they came with a trailer and pulled the Tahoe up onto it and started driving away,, I'm standing there in a clump of trees,, and it seemed for some reason they were towing my JohnC away,, Crazy like it was a funeral car or something I dont know,, just that it made me cry... and then I think of Our Bettye and the pain her heart is in,, the struggle, the fight she is in,, myheart cries for her.......
Cry it out Linda, I know that feeling. It just comes over us but as Lissa said in an earlier post, this is God's way of letting us grieve a little at a time. It doesn't have to make sense, feelings are feelings. We are all right there with you, that is the beauty of this group. One of these days, we may find that their illness was the source of our greatest blessings. As I told the pastor when he was visiting over dinner, who else in the congregation gets these kinds of visits?? I am blessed. Blessed to have all of you as sisters and brothers. Love you, clydia
Wow, now I know we are a sisterhood/brotherhood, yes all this does not make sense and it sure tugs on our feeling/emotions, for me it's not the daily work,that is the easiest to adjust to.. but watching someone fade away in their personality and all that is wrapped up in being human... sometimes when I look in Adi's eyes... reminds me of the Black hole in the Universe,un- explainable ..it is truly the saddest & longest Good-by. Someone is looking out for us - in keeping this forum going, to make our trials and tribulations a bit easier. Wishing all a good day - and thanks for being there... Erna Lloyd & Lee how are things with you!
So glad Bettye has John in the hospital - I am sorry he has to be there, but he is in the right place in case of emergency. Jim's med tech called and said she was contacting his doctor about him taking an Ativan each evening. I said the rx says 1 or 2 daily as needed so I was giving him one each night, it was needed. Am I missing something here? She said she needed his ok to give it every night. Fine with me if she wants to call the doc. They said he was always asking for me and up at night. That was my complaint in March when the doc first prescribed the Ativan. Is it better to see him less or more to releive some of his anxiety? Mary says she stays 5 to 10 hours with Tom. I don't want to sleep there-that would be defeating purpose of him being there so I can get some sleep. Today I have been painting-two doors and jambs have been unpainted for 10 years because Jim didn't want me to touch "his" doors. So many unfinished projects!
Good morning...slept late this am...until 9...wow. I was tired...did a lot yesterday! Barb...those unfinished projects are just what you need right now to keep you busy. I used to visit Dom for 2-3 hrs each noon time to feed him...couldn't stay anymore than that....I'd run out of things to say and do with him. I am so frustrated.....can't get anyone to call me back from state/county offices. It is supposed to top 100 degrees here tomorrow.....must walk to store early in the am. Bettye, hope things are looking up....prayers still being said here. Gotta run, breakfast is calling. God Bless all. Love, Brenda
I can only speak for myself, Babs I would visit to see that all is up to snuff.in dealing and caretaking at NH.. if you visit too often, it's torture for him too... like a kid that you dropped of at kinder garden, they are fine until you arrive,and then it comes to mind they missed you, once you are gone they won't remember, and I also think it matters how far along they are into dementia, I know if I dropped Adi off, the first couple of day he would be a mess... til he gets used to the environment.. it's the same when I take him to Mexico, the first week he is out of whack... and then he eases into the routine (it's all about routine) of course the meds help... As far as Nh questioning the meds intake, let nurse& Doc figure it out... just make sure they don't overdo it... some NH overdo sedation to keep them quiet, and then they are really like zombies (you don't want that either) over sedation, causes other issues, falling, hallucination,dryness of the skin, thrush etc.. I like warm summer weather but this is too much, I left my broom out on the deck, the bristles partially melted UGH, can't water the potted plants enough. Stay cool Erna
Boy, this is a heck of a way to tell someone you were thinking of them...but I did just think of you Brenda when I walked into the kitchen and smelled poop...thought it was coming fom the half bath. Nope. But it WAS coming from the trash can! I don't know if he went to the bathroom in there or took it out of his underpants and threw it in there-but there it was...a big ole snickers bar sitting right on top of the trash. All I could think of was Dom using the trash can as a toilet... But I did laugh when I thought about it Brenda. Ah crap - literally.
Joan funny but not funny, if you know what I mean... so far Adi has always aimed in the toilet bowl, except wiping has become my job, it's either that or after clean up.. don't always ketch him at the right time... amazing all this has become part of the job... don't be a sissy and a just do it has become my motto, til the next hurdle, then you freak out, and then you adjust, and it becomes part of the daily chore. Went out of the house for a while... it is 107 degrees, can't remember such a heat wave, but then again maybe my memory is slipping too LOL Did you ever think you would talk about "crap" on the internet haha
If only our grandchildren could hear how we talk!! Joan-Jim peed in any "receptacle" as he called them. Several times when he pooped, he brought it to me in his hand-talk about snickers!! Went to see Jim-flossed his teeth-he lets me and I don't think they do it. He was glad to see me and very calm. We went and watched the news and chatted with his buddy and the "girls". Lunch was ready and he almost couldn't get to the table fast enough. They were starting with clam chowder, one of his favorites and he was digging in. Gave him a kiss and he asked if I was going to the store. I said yes and he said, ok, bye. It has been three weeks-probably longer for me than him. Like Erna said, routine and they are fine. My sister called and asked if I wanted to go on an outing-first time in several years-when she said Sam's Club-a sixty mile drive-I said I would pass, I have a sore leg. She said I could ride the cart-I said I would pass. I am not yet bored enough to go to Sam's Club-maybe a month or two ago, or a year ago, but now I can go anywhere! Joan-I love your sense of humor-what a way to say you care!! I remember when Dom was doing that-it put me on guard, but I was unprepared for him going in the dog's bed, the litter box, etc. I am going to finish my painting and keep cleaning out suff. So nice not to be interupted all the time-I get so much done. It should be easy once caught up. Sorry you are all so hot-we do get heat once in a while-but it is in the 70's and sunny-perfect for me. Oh-it's Friday-date night!
You guys are really funny today. I have not had that experience since Norm had his "accident in the middle of the hallway and tracked it all over the living room, down the hall, into each of the bedrooms before I woke up! I sleep very light since then, if he even turns over, i am on it! It was months before I discovered that he had hosed down the closet where the cats box is, ruined the laminate floor with that one! He is doing better and that is because he is further into the dementia fog. He is having trouble with "sit down", "stand up", "give me your foot" etc. He is either pacing around caring things or he is asleep, there does not seem to be any other existence for him. Erna, you say you make Adis food and put it out for him, does he remember to eat it, how to eat it? Norman would not have a clue. I have to fix it, bring him to the table, get him to sit down after many tries and then i have to give him his fork or spoon in his hand and guide it to his mouth, sometimes repeatedly. He must be further along than Adi. I could no more leave Norm for 5 minutes than I could fly. Speaking of flying, I booked my flight for Sept to go be with my daughter on her birthday. Got a good deal and we are all excited. My caregiver is quite alright with staying there overnight. I am so looking forward to getting away. We will work on her giving him a shower, may have to ease into that one. If he balks, I bought the adult rinse free cloths and also a baby wipe warmer at Walmart and she can just wipe him down. I found out that the Assurance Maximum is a really good nighttimes brief for him, got those at Walmart too. Thats what I did the day I was off and the caregiver was taking care of him, i shopped for stuff for him that I had been needing. I also got a contraption that has arms on it that fit over the toilet that he can use to push himself upright. Sure saves my back and gives him some exercise with his arms. Looking forward to the weekend, getting some rest and reading. I am reading the Walk series by Paul Evans, so good. Take care my friends, see you manana unless something spurs me to post tonight.
Clydia to answer your question, yes he still comes down to eat.. and still knows to eat by himself.. simple food finger food mostly.. no soups, nothing runny,, sandwiches, pizza, noodles with spaghetti sauce( not too runny) and his ever ready tomato and piece of fruit..I cut everything to bite sizes, and oh not too hot or cold..or he refuses to eat. Occasionally when I call him to eat, he will come down and sit by the table and look at the food for a while, I guess it takes him a while to figure out what he is supposed to do.. after a second or two, he will eat. I do have to shower him, he would not know what to do how to undress or dress or shampoo his her hair rinse dry himself etc... He also does not understand most of what I say, like yes and no.. whatever I say he overrides and continues his thought process....Poor guy is so obsessed in going in his car... it's too hot to go outside... he paces up and down like a caged animal, I have noticed this obsession is the worst between 2- 5/6 after dinner he settles down. The obsession is the hardest to take at this time, because there is nothing I can do to alleviate it.. even with meds, plus I don't want to overdo it and make him a zombie. I have looked high and low for better overnight briefs.. we don't have the ones you mention - clydia .. will try other Walmarts maybe online. Gotta run he's trying to open the door which is double locked til later
Joan....glad you laughed instead of getting angry. Of course Dom now is totally incontinent. Sometimes I can tell when he has to have a #2 and can get him to the toilet in time. Well...I called the state again.....when I explained what was happening they had a supervisor call me back. She is waiting on the local county office to give them the financial/medicaid approval papers.....for crying out loud.....this has been since May! She is going to reach them somehow and see if she can get him approved today as I need help immediately! How hard is it to FAX something! As soon as I get approval I will sell my queen sized bed and get a twin....that way there will be room for hosp. bed for him. I will put ad in local paper and a sign up in bldg.....maybe someone who lives here knows someone who can use it. Too nice to just give away and I could certainly use some money. Hope everyone keeps cool in this heat.....103 expected in Phila. area tomorrow.....not much better here. Later guys and gals. Love, Brenda
Erna, 107"! Yikes. and in Chicago, too. kinda frustrating day. Bart's back and belly are hurting and he is finding more things that he has forgotten. He got mad because there were no groceries in the house. well, last week, he got pissed at me and said we had to eat everything up before he would give me more money for groceries, so that is what I have been doing and he acted like he didn't remember saying that. Groceries cost more today because there was so much I had to replace. Last March (a year ago) he bought new car seats for his convertible and paid $1000 for each one. (we had money then) Now he can't understand why he bought the wrong kind; they won't fit in our car. so I guess he will have to sell them in order to buy more because I doubt seriously if they will take them back now. Poor guy, I can tell when he doesn't remember s**t because his eyes shift and he changes the subject. I really enjoyed the dialogue about crap. only a mother of young kids or our old ones would understand.
He has turned his music up real loud and probably looking for more car seats on his computer. He tends to be an impulsive buyer but hopefully he will think now. (glad that I like this music. It is very intense, and describes our moods today.
I did exercise for 90 minutes and it felt good. going to try to go again tomorrow. I have a gym membership and want to use it as much as possible until school starts because I doubt if I will go then.
Later family. so glad you all are here. anyone hear from Bettye today? Lissa
No news so far!.(from Bettye).. I remember in the beginning of Adi's disease, we had a big falling out.. cause he accused me of giving all his retirement money away to the kids... I gave him the check book and said "you pay the bills" that lasted one week.. never mentioned money again... and now he doesn't know which end is up or down. Adi is sitting next to me being obsessive about going in the car... I let him sit in there thought it would ease his mind... didn't matter still obsessive I guess his record is stuck... Erna
When norm strts with me about the cr or going home,I just put him in the cr nd drive, no place in particular... That's hrd to do, but after awile he says lets go back and I turn round nd come home. He doesn't do tht s much now, in fct, it is hrd for me to get him out of the door. He's napping now, I'm watching the news, food is heated up nd ready to eat. Not going anywhere so it doesn't matter when we eat. Brenda, sure hope you an get some help soon. Babs, take care of that leg, don't work too hard. Wise move to skip SAMs, you can go there when you feel better.. Or not. Tke care all, clydia
Boy there are memories, every thing you gals are saying, I went thru with June. On the diapers, I used the Assurance and make sure you get those tabs pulled tight, they work better if you do. It was about 107 here today and supposed to be 105 tomorrow, sure will be glad for next weekand the 80's. I pray you all have a good week end, the full moon should not affect much now. Hugs, Lloyd
LLoyd, I tried the briefs with a tab. but when he goes to the bathroom he rips them off and then goes to bed totally without.. he still goes to the bathroom problem is when he goes it's already too late.. I tried put in an extra pad (in the depend) he pulls it and flushes it down the toilet.. it be-hoofs me because he never flushes any other time. Clydia about driving, it's the same here, he bugs me about getting in the car, when we drive off, he says "when are we going home", he mentions the car in the morning, but becomes obsessive in the afternoon, I think it's boredom, sun-downer, doesn't mater what i call it .. at times it gets old 24/7... Adi insisted on sitting outside, I finally gave in, after 15min told him to come in he was soaking wet, I bet he would sit outside til he gets a heatstroke... cant' wait til this heat eases up..then he can sit by the front door.... hope my Ac holds up.. feel like I am on house arrest, been home all day. TOmorrow Color and haircut, and Manicure/pedicure..and in the evening go to wedding...I think full moon is receding Til manana erna
Lloyd thanks for the feedback I am going to look on line -walmart..for more choices.... last resort will be to ask at NH.. they have to have better briefs somewhere ... at least for night time. I even cut down on his drinks for night time.. And the driving, maybe that's deep rooted in his mind, his car was his pride and joy.. and also loved to drive... his retirement dream was, we get in the car and bum around the National parks, till we would be sick of driving... never happened poor guy never was able to enjoy his retirement he so looked forward to... all the fishing, golfing, tennis etc.. is not to be be.. good thing he doesn't know what he is missing...Good night to all ..
Lately Dom has been undoing the tabs, so we are back to pull-ups. When I go to change him I put the clean ones on legs and cut the dirty one off. It is quicker that way and I don't needto remove trousers. He fought me tonight to clean the butt after toileting. Left bandage...will change that when he is half asleep...he'll usually roll over in bed for me. He ate well tonight. Hope Bettye & John are okay tonight.....I keep praying for them. Keep cool friends. Till tomorrrow, sweet dreams. Love, Brenda
JohnC is doing the BM thing,, wants to show me,, how long, how brown, how dark on the tip, tell me how easy or hard it was,, how many time he went today,, BUT he also records it in the Daily Planner I bought for him a year ago,,actually it is the second one,,, He writes down each pill , each headache, that he took his pills with food,,, etc...I know he does it so he can look back to see if he took meds, and had a BM today... Also Mom told me that while I was gone a few days , that he came over and told her about his BM's.. Well he calls her Mom like I do , so guess she filled in for me..
Ok, went to Doc, office today. all 3 of us see the same Internest... I spoke with him about stopping the meds,, and went over all the changes in the last 6 months... When we went in with JohnC,, the Doc was so sweet and gentle with him,, I wanted to cry,,,, He game me some B12 injection to give JohnC, because John thinks the B12 under his tongue is causing his "pee pee" to hurt when he urinates... that took another specimen, and blood,,he also Rx'd something to relax his prostate so his flow will be better,, after a "finger wave" ( prostate exam) he said it felt like a 70 old one, haha... So that is all for now,, Love you all very much,, Pray that Bettye and John are Ok......
Linda it sounds like Johc is trying to have control over something and that is the only thing he has. They always ask you in the hospital or drs office about that anyway so he might as well keep track of it. It sounds like areally stupid skit that cheech and chong used to have about a couple of dogs. lol
