Up at six-fifteen, get paper. Read paper until 7:30 in husband's room, while he gradually wakes up (his recliner and light are the best for reading in the house!). Nudge him into bathroom, where I help him remove nightclothes, trash "whitey", get into shower. Leave him alone until I hear him finished showering (he uses up half a bar of soap every day). Help him dry off, put on tshirt and new whitey, and walk with walker to bed. Help him get on compression stocking, trousers, shoes (he can't tie his own) and started into bathroom to shave. Go down to start breakfast. He is late coming down.
When he does come his shirt is on upside down, the neck around his waist. That's new; and it takes forever to get him untangled. By this time it is 9 am; breakfast is finished by 10; I put clothes in the washer and start checking out email. We had a board meeting last night of the local land trust and there are several things to deal with. After he finishes breakfast he eventually makes it upstairs for a nap.
By the time I'm finished it's almost noon. He comes down. I supply him with vegetable soup, two Danactive yogurts, a banana, a peach, some bread, some salami. And go off to do shopping in our town.
When I come back, our dear next-door neighbor is sitting in the kitchen with him. Seems he'd gone out the front door with his walker, down several steps (heaven knows how) and walked down to the street, several yards to the driveway and started up the driveway to the back door before the neighbors saw him and came out and made sure he got up the back steps and inside safely. And stayed with him until I got home! Husband is happily explaining to neighbor (whom he has ignored or disliked for 38 years!) how he had called the Kremlin with the TV remote, using my cell phone number. And how he could speak the Russian language (he can't). Neighbor pointedly explains to me that he and his wife will be out of town for all of next week (read: so watch out for him, we can't).
I realize I can't leave him at home alone any more, so I load him into the car (20 min), go to local farmer's market and buy lovely veggies (15 min) and return home and get him back inside (20 min). Send him upstairs to DAMMIT TAKE A NAP!! and read/doze for a few minutes.
Fix my purchases: lovely fingerling potatoes, yellow zucchini with some leftover pesto, and sole menieure, which he likes. After dinner, the 45 minute unravelling of all the dressing and pottying etc before I come down to put coffee on for tomorrow, refill the wine carafe from the boxes, and portion out the food for the four cats who must be separated into different areas. And it's only 7:30 pm - I have a full hour or two before bedtime!
Oh, briegull, nothing like yours. It is amazing that you managed to find a few minutes to enjoy that you had found those lovely potatoes. Do take care of yourself. All of that frustration is a killer.
Except for the fact that my husband's shower now takes forever, he basically can do most of the stuff himself. I put out his clothes for him. But he puts them on, and gets them on OK. I'm not looking forward to telling him he needs to begin to wear long pants in a week or two when it gets too cold for shorts.
We went food shopping too. I did deal with the trailing behind by 20 feet, but I'm so used to it, that I automatically keep checking where he is, and head back to put things in the cart. I've found giving him the cart helps a lot. It is a good thing that I no longer need to use it as a walker like I did a couple of years ago.
These days I'm making the food I always loved and mostly didn't make for years and years. And if we have rice two days in a row, he no longer remembers and it doesn't start WWIII. I took the time to enjoy my spaghetti with meat sause this evening. I don't know if he enjoyed it too.
Briegal, my day is nothing like yours. Whew! I'm pooped just reading about it.
Starling, when it's time for long pants, why not just put them out and not say anything about it. It might just work. My DH can mostly take his own shower yet but I do remind him to use lots of soap here, there and everywhere. He thinks that's pretty funny. He doesn't use body wash because I do and he thinks it's only for girls. He has his own special bar and he does use that. I do dry him off otherwise he wouldn't get dry. I do not lay his clothes out for him during the week (he always wears jeans and a t-shirt or a sweat shirt. I do have to collect those every other day and throw them in the wash. I don't ask. I just pick them up from the bathroom. On Sundays, I lay out his slacks and pick out the shirt. He doesn't wear a tie any more and the last two weeks, I had to undo and rebutton his shirts. And, he does not straighten his collar any more. that's sad because he was always such a snappy dresser. But, he still looks good. He shaves every Sunday morning. He gets his haircut, eyebrows trimmed and ear hair shaved out once a month. I take him up to the nail salon and he gets his toenails but about every 6 weeks. They treat him so good up there and he just loves it.
Well briegul, mine wasn’t as interesting as yours today. Up at 7:30 and wake husband. He takes his time getting up to avoid leg cramps. He strips, botties himself (thank goodness). I dress and get ready for my morning to do whatever I want, all by myself. Have no adjenda at all.
He can take his clothes off himself but needs help getting them on so I give him the deodorant or use it myelf, and help him put his clothes on. He can usually get his pants on but has trouble with his shirt and usually gets one of his arms in the neck hole. Sometime he gets both feet in the same pants leg. Remind him about brushing his teeth and combing his hair. He usually takes his electric razor in the other room to use. I have to usually help him with his shoes. He can’t tie them either.
I get out his meds and juice and pour his cereal and milk. Usually we don’t do this and instead I take him to Mc and we go in and sit down for breakfast. I take him out in the car. almost every day. He usually stays awake and sometimes will take in the scenery, but not always.
Anyway, the caregiver comes at 8:30 and I am off. She said he slept almost all morning.
This afternoon he asked me if I remembered the Ophra show, the other day about phornography and internet situations. He said she said “There are more registered (politican party) doing the phornography”. This was completely not true at all and I have no idea how he came up with such a story. I told him so in no uncertain words. I was telling daughter about it this evening and told her to remember that when he told her some pecular story.
Fixed extra dinner this evening for daughter and son in law. At 7 he comes in minus shirt and goes into the bathroom. I waited a little while and went in to help and as usual he was sitting on the bath stool in the shower, with the cold water running from the faucet and “taking his shower with a wet washcloth.” I didn’t say anything but turned the water to hot, flipped on the shower and soaped him up and rinsed him. He dried himself and dressed and even got his shirt on right. (the last 3 weeks has shown an improvement in some of his dressing issues, but obviously not turning on the shower. That must be in a different part of the brain). He has been sleeping in his chair sense.
I put the dishes to wash and am spending the evening in my recliner. Then starts another day in the morning.
YIKES! Okay, I'm not going to complain ANY MORE about about endless questions, repetitive questions, and getting information mixed up. That is NOTHING compared to what you all are going through.
Whoa...Joan, I am with you..the time will come, I'm sure, but no complaints from me after reading all this! I still have the bed made, dishwasher semi emptied and garbage taken out (when prodded) and requests for more to do to help..so I will treasure the small things now.
Mawzy, In the past my husband also thought Shower Wash was girly. I told him Shower Gel was for women, however, Shower Wash was for men, then he found out our sons & lots of other MEN use it & decided he would give it a try. I always buy the kind that is for men only....very important to him. Believe me it lathers so much easier than bar soap on the washcloth.
But how do you hold the shower wash container in place? I thought it would be easier too but gave up when I realized I would have to teach him how to use it. Maybe I'll get soap-on-a-rope.
For all of our years together we've used Dial soap in the shower. I'd buy the bath size. Lately you can't GET that, you get one size, it is 4 oz (I think bath size was 5 or 6), its sides are concave and it's expensive. HOWEVER - I guess they're changing something again because it had all been pulled off the shelf and marked down. So I bought a LOT. Maybe it'll last a couple of weeks.
I am in admiration of you folks who can actually get your husbands out of bed at some decent time. I try to get as much of what needs doing, done in the morning because he's still sleeping. I start waking him at around 11, but he rarely gets up before noon. He doesn't want to eat, so I usually make him a drink in the blender with Instant breakfast, fruit, ice cream and whatever else I can throw in. He doesn't finish that and his pills til after 1pm. I can't get him to dress or wash unless I tell him we are going to the doctor. He usually stays in his PJ's all day, and after his brunch goes back to sleep.... unless I have someplace to go. In which case he sits by the door and waits for me to return, worrying that something might have happend. then when I get home he goes back to sleep again. I wake him for dinner, we watch TV, he falls asleep on the sofa, I bring him to bed, and it begins again. I feel like I am a prisoner in my home. Yesterday, I went outside to clean up the garden, and he panicked because he couldn't find me, but he won't come to a store or anything with me. He prefers to stay home and sleep. It's lonely around here, but my house is cleaner than it's ever been. (grin)
Sort of a combination Ordinary Day and Improvements.... waited for the other shoe to drop when my DH seemed to be happier, more aware, able to do a little for the last couple of days and I guess it has. I was awake until 2 am, up at 3, and up again at 6...he was worried because I didn't come to bed when he did so he carried on a anxiety ridden conversation for hours about why I didn't love him, now much he's done for me, what will he do now, over and over and over. Nothing seemed to stop it. I tried ignoring it, responding positively, threatening to sleep on the couch, etc. but nothing stopped him until I guess he finally fell asleep out of exhaustion.
He can't do any ADL for himself. As soon as my alarm rings he insists on getting up, I dress him, get him to the toilet, shave him, sit him down at the table, tell him to eat his breakfast, undress him to go in the pool, encourage him to go down the 3 steps in the pool, dress him again, make sure he drinks water, watch him most of the day as he paces around the house picking things up and moving them or breaking them....and on until he finally will go to bed at about 11. I am so grateful that I can afford to have an agency send someone to the house a few days a week so I can get out and have fun with my dogs at agility trials and talk with people who make sense! But I am always waiting for that next downward spin.
Briegull, Right now we have the shower wash & shampoo in the shower caddy. However, I am thinking of looking into a dispenser to put the shampoo & shower wash in, thinking it might be easier.
He awoke me at 2 a.m. because "Walker, Texas Ranger" was over and he wanted me to find a movie for him to watch (he doesn't like paid programming!). I scrolled down the remote (he can't use the new one) and found one he liked and started it for him and went back to sleep until 3:45 a.m., when he woke me trying to get up and get dressed, thinking it was time to get up. I talked him into getting back into bed and watching another movie. It was over at 5:30, so he got up and dressed then, so I got up (grumbling) too. After pouring our coffee, letting the dog out, getting the newspaper, and our reading it while drinking our coffee together, he dozed sitting up while I took my shower and dressed for work. I got his medicine and took it to him, watched him take it, put in a DVD for him to watch (he doesn't like regular TV any more) and woke my grandson up so that he could start his "companion" duties while I left for work. I came home at lunchtime (15 minutes each way) and prepared a quick lunch (15 min.), ate with them (15 min.), gave instructions for the leaves and small branches in the back yard to be picked up and bagged (one of the few things my husband can still do) and came back to work. After work I went home to find my grandson on the computer, my husband in the kitchen (a no-no because he has lost the ability to put things where they go) and the backyard looking the same as when I left. I scooted them outside and went into the living room to find that my husband had "rearranged" the items I had packed in various plastic tubs for distribution and storage, including 25 VHS tapes that weren't labeled (and now I have to re-watch to make certain I don't throw away family film!) and clothing for storage and Good Will. My grandson obviously had been on the computer in the den and thought granddad was sitting and watching a movie in the living room....I told him what his grandfather had done and the work I now had to do because he hadn't done his job - as companion (he had been told several times that unless granddad was in the bathroom, he was to stay in the room with granddad at all times). I don't think he'll make this mistake again! <grin> After picking up and redoing two plastic tubs of items (I have one more to do tonight) and changing clothes, I gave my husband his evening medicines and we ate dinner and then watched one TV show from 7 to 8 (I fell asleep halfway through it) and by 8:30, I got up and he followed me and we went to bed. (normally I go to bed at 10 - 11, but two nights with little sleep was telling on me. AND, last night he did it again!!! And was determined to get up at 4:30 this morning, and it was all I could do to convince him to come back to bed until 5:30! Today is shower day - I only attempt it every other day. I put the body wash on the net ball for him, and I also shampoo his hair. And lay his clothes out. But that is this evening's story. <grin>
Well, looks like all of us are kept busy in many different ways. Nothing is the same.
I use the shower liquid soap and one of those net shower balls. I find it works better than a wash cloth for us, but I use it. I put a generous amount on the wet net (can't think of what it is called) and wet him down from top to bottom then apply the net from head to toe. You will have lather galore so don't use too much. Then rinse.
I don't know how he would use the liquid or bar by himself. The bar would soon be in the floor.
Mary, I can relate about the teen. Can you not find something to make him sleep at night? You need your rest too.
Joan, re your blog today about another ordinary day, you will adjust to the situation on hand just like the rest of us have. Just like we did when our children were born, we get a new pet or whatever. Although, I have to agree working along with this stage of AD is beyond my comprehension. I have time, but I am emotionally drained from the strain of the unknown and not knowing what will happen from one day to the next.
You're right, the uncertainty of one day to the next is what is nerve-wracking. Today he promised me he wouldn't go out if I took a walk, and he didn't. I guess I just have to remember to remind him every time!! For the moment!
This afternoon I let Cat Four (Max) out of his semi-isolation in my room, to deal with Cat Three (Chimichanga) for the first extended amount of time, while Cat One (Shadow) and Cat Two (Masha) were both outside. Lots of yelling and absolutely no real contact. Chimi is just ticked. Husband is fascinated with the cats, delighted when they hop up to visit him. And we watched a lot of Secrets of Archaeology, stories about Crete and Ephesus and Santorini and North African ancient monuments.. So it was a good day.
I remember before my husband went into the NH what my days were like. After reading Briegull's notes - her day was much like mine - but I had no neighbor to help. I had to toilet, bathe, shave, dress, and do everything for my husband. He was unable to do any of the daily personal stuff. I even sang to him. He could not use the remote to the TV - but he was velcroed to my hip as it was. He would only stay in from of the TV if I was right there with him.
If he wanted to go into the yard, I had to go with him. I took him everywhere I went from the hair salon to the Dr.'s office. He could never be left alone. Many times I had to chase him across a parking lot because he would manage to open the seatbelt and the car door. Oh yes, one thing he could do was open locks. There was not a lock built that he could not open. When I would ask him how he got the locks open - he would smile and say "Easy".
He could sweep the kitchen floor. He swept it many times a day - I had the cleanest floor in town. No, he can no longer do that. He is now wheelchair bound and losing the use of his hands and arms. Today a lift is needed just to move him one place to another. Treasure anything they can do for themselves. Even if the laundry is not folded as you would have done it - that's OK, or the silverware put in the wrong drawer - at least they are trying to help.
Joan, I think it is, we do what has to be done, when it has to be done. We don't take the time to think about doing it - or what we are doing. If anyone had ever asked if I could have done all the things I did - I would have said 'NO'. But I did them for years - without any help at all. I don't know how and I don't know where I found the strength to keep going on little of no sleep. I slept with my head on Ron's feet - so if he moved I was awake to do what needed to be done, or settled back down again for the umpteenth time most nights. Each day is different and each person is different. We just do the best we can, and that is all anyone can ever ask of us.
We had the Mary days. I'd put her to bed at 9:30 or so. Sometimes she'd want to stay on the couch, but I didn't feel that was healthy or safe. So I got her one way or another in bed, and put in the DVD of Everybody Loves Raymonds. Sometimes she'd sleep for about an hour, but most of the time was up all night, shredding paper, talking to the mirror, attempting to go to the bathroom. All night, and I woke up every time.
Mary, I am not kidding when I say that going through that every single night will kill you. It put me in the hospital. Find medication. Either lock him in a safe room so you can sleep on the other side of the house, or get him medicated for sleep.
Anyway, then we spent the next morning deciding what to eat, and doing errands if I felt like she was in a good enough mood not to throw a tantrum in the store. Spend the rest of the day playing shadow-and-seek.
Most of the afternoons she'd doze in a chair. I spent those hours alternating between being glad she was out and that I could finally not have to deal with her, and being pissed that she was getting a nice nap when I knew what was in store for me because she wouldn't sleep at night.
Imohr and Trisinger, thank you for your comments. We went to the neurologist yesterday to find out the results of the EEG and its comparison to the one two years ago (she wanted to do it due to the TIA he had last week). She says he has lost more on the left side of his brain. She isn't changing his medicines.
After writing my day here, and reading your replies, I got to thinking about letting myself sleep deeper, and seeing if he would try to wake me up anyway. So I did, he didn't, and I got 8 hours sleep last night! It might be a fluke and it might have occurred because of three nights with very little sleep before!
We all have different things we have to accept and do at different stages. NONE of us has it easy. It is a torturous road we travel, and without each other, it would be very hard to navigate!
Hearing what each of you have gone through and are going through and how you are coping, helps all of us. That is why we mesh here so well.
Ruth, Briegull, Chris R, and FLgirl, I appreciate your sharing and to know what is coming.
Wow! I can count my blessings that I am where I am - earlier in the caretaking of my LO w/this disease. He is still able to be by himself. I'm not sure for how long but for now he can. Here's my typical day:
Up between 5 and 5:30 am. Shower and get dressed. Then I'm off to take the dogs out. After a potty break, dogs and I eat breakfast. I then leave notes for DH so he knows what happened in the morning. I'm off to work and quite frequently I will listen in on a teleconference while I'm driving to work (it is all on a speaker phone so no problem driving). I usually get my 1st phone call from DH about 9:00 and typically will get 3-5 calls per day. If I'm not available, he leaves a message that I have to decipher. Yesterday I had one about all that water moving around and with the rain it wasn't watering. Tranlation. Automatic sprinkers were running and it started to rain.
I will typically try to leave work by 4:30. If I get home later than 5, DH starts getting quite ancious and thinks I'm not coming home or I am working all night long. I get home and then get to listen to his day. He keep notes on the number of times the dogs went pooh and pee. After about 30 minutes, I take the dogs out for their afternoon potty break. I come back in, fix dinner and usually by 7:30 I'm ready to sit a bit. By 8:30 I'm exhausted and it is off to bed.
Ah, the poo and pee patrol! I guess it's back to when they were 4-5 and fascinated with it (isn't there a kid's book that's called Everybody Poos ?) I have to inspect the output every day.
I guess its time to bring this up again. Each days seems to differ a bit, but here is yesterday:
I got up at 7:00, showered and dressed. Then tried to get my wife up. She refused to get out of bed (as usual) so I finished dressing and tried again. This time she got up. Took her to bathroom to change night-time diaper for day-time Depends. Dressed her entirely with little or no help from her. After getting the paper, sat her at the table and started breakfast. First item is grinding her pill in apple sauce. Then cereal and coffee. She usually eats cereal with only minor encouragement. I had to feed her the apple sauce.
At 10:30 we went down to the Living Room at our retirement Inn for weekly "Tea and Coffee". This gives me a chance to talk with other residents. My wife just sits and drinks her coffee and eats a bagel. Yesterday we had a special Christmas Concert by the local highschool group during the coffee. During the day I try to get her to the bathroom at least every 2 hours, but even so she usually has wet the Depends.
In the afternoon my sister sat with DW while I went down the hall for a SHEN session. I'm not sure how to describe this, but it is sort of an energy transfer. Anyway, I feel very relaxed after a session. Later in the afternoon a paid caregiver came to be with DW while I drove to the next town for a meeting. I got back in time to take her to dinner - the one meal provided by the retirement Inn. She eats well after I cut up her meal. Had long discussions on many topics with the other 2 at our table.
Then back to the apartment to watch Jeopardy. I don't know if she gets anything out of it, but it keeps her quiet. After grinding her pills in applesauce again, and feeding it to her, it's time to start for bed. This means undressing her, trying (unsuccessfully) to get her to brush her teeth, changing to the night-time diaper, and getting her into bed. Then I have about an hour or so to check e-mail, read postings here, or watch a TV show I have recorded. I usually have a glass of wine and piece of dark chocolate while watching the TV. Then to bed.
The only difference is on Mon, Wed, and Fri when I take her to the Adult Day Care center for 4-5 hours so I can exercise, shop, go to doctors, etc. The rest of the time is as above.
Marsh, I think it so great that you were able to move with your dw to the Retirement Inn for both your comfort. It must be a comfort to you to have staff and visitors to talk with and not be "penned up in your home 24/7", but still have your "Real Home" waiting for you just a few miles away. You are doing a great job caregiving your wife and she is very lucky to have you. We all can relate to your typical day. Well, I can't relate to the Depends because I didn't have to deal with that. I was very lucky. I knew if my dh became incontinent and unable to walk I would either have to place him or have in-home care every day. It sounds like you are now able to get out during the day for a few hours to have some time for yourself. I know that "feeling". Take care of Marsh.
Hadn't read this thread in awhile. Interesting - I wonder how much has changed since it was started in 2008!
Well, my day has been pretty 'ordinary'. Woke up, showered, got half dressed and went down to get coffee to bring up to bed - we do this everyday - coffee in bed for about an hour - from 6-7. I finished dressing, to, told DW to go take a shower and laid out his clothes. Went back downstairs, got the paper,slipping on all the ice, drank a glass of juice. Heard the shower turn off,so back upstairs to dry him off. Back downstairs, fixed my cereal and read the paper. He finally came down, dressed okay and was ready to take Millie out for a walk. He does this every morning. Came back and he fixes his own cereal and juice and I put out his meds. After he ate we had to go to the grocery store. Am having a brunch tomorrow morning. He loves to go to the grocer! Came back and had him peel some clementines. He helped me put all the fruit together. It's now around 11 and I told him that was all until after lunch. Gave me an hour to do whatever. After lunch, I started making mini-quiches' for the brunch. He helped - took longer but he was happy. At 2 p.m. I told him that was all for today and he could go play on his laptop - and that's where he is now. At 4:00 I'll go down and feed Millie, then he will take her for a walk and I'll start dinner, we'll have a glass of wine, eat dinner - and-zoom - he's up the stairs, into his pj's and in the bed! This is around 6:30 or 7:00. He will sleep all night with one bathroom run. Gives me the entire evening - and the evenings do get very long sometimes! Oh, did I mention the 25 times he asked me why we were making so many quiche? LOL Or, stated the fact that no way could he and I eat all that food!!! He really is a sweetie.
So...I don't have nearly as many problems during the day as so many of you do. May God bless us all.
Interesting to read this two years on. Today, as every day, I give my husband breakfast in bed, bit by bit so he doesn't pour his milk into his yogurt dish, etc. I go off to my stint volunteering at the zoo as Andrew, the CNA, comes in the door. When I return (having done a good turn around the zoo to exercise my new-knee leg) husband is quietly watching TV in bed, having been bathed and shaved with by Andrew. He can't walk more than a few steps. Give him lunch, a sandwich and a cut up apple, which he can still feed himself, and doze a bit while he does. After dinner Andrew shows up again and efficiently changes him and gets him back into bed in clean pjs. And right now, almost 8 pm, he's still watching TV. He seems to understand a bit, and he can still occasionally make sense when he talks. Still seems to understand much of what we say to him. When I go up and turn off the TV he will give me a sweet loving kiss and tell me he loves me. That makes it all worthwhile.
What was my day like/ Well got DH out of the hospital today. He had a riproaring case of A Fib. All his meds were reviewed and he is home after 5 days. All meds were reviewed and some changes were ordered and he is to be observed and checked for the next couple of weeks and if we see these swings again then a pacemaker is going to be considered.
Briegull, your Andrew is a gem, and I'm happy to report that I, too, have found an "Andrew" through an agency; his name is Tony. He is a young man and was a vet in the Philipines. His own father drowned when Tony was 13, and the body was never recovered. DH and Tony took together like father and son from the beginning (DH's own son visits infrequently). The care Tony gives is heartwarming to watch. When I visit DH in the facility, he is always clean and comfortable, fluid intake up and Boost there to sip. Tony has DH help him with the daily crossword puzzle, and he reads him his horoscope. DH says, "I can't say enough good things about Tony." Tony changes DH position frequently, and his pressure sore is healing. I think that Tony and Eric love each other, and I love them both.