Do you ever look at your LO and ask yourself, is he reeeeely that bad. Does he reeeeely not "know" anymore. Our lives are secluded, quiet and we function (such as it is). For over 2 years, he has eaten all meals in his recliner with a lap tray before him. I put a different utensil in each bowl or plate, unconsciously. A spoon in the pudding, a fork in the main plate, a second fork in the salad plate. No knife, because I have cut his meat into bite size pieces. (or he would hold the chicken breast or piece of beef in his hands like a hamburger.) That doesn't seem unusual, it's just our normal way of preparing his meals. Days pass and he doesn't have a temper fit, he dozes most of the day or sits with his eyes closed. He's not a problem as long as we stay here and there are no challenges. He won't bathe or brush his teeth without a major confrontation resulting, but most of the time, I just ignore that. He doesn't smell bad. His day is spent in his chair, glancing at TV, looking at a picture book, and petting his little dog. His doctor says he is in the severe stage - or at best, the late moderate to severe stage. But as long as no one comes here and we don't go anywhere, he just sits in his chair and I piddle around the house keeping an eye on him.
He can't walk very well. He scuffles his feet and moves very slowly. He can't step up on a curb from the street without holding on to something and he has trouble getting up from his chair, getting in and out of the car. How long has he been like that? I can't remember. It's been quite a while. It's just "our kind of normal".
In the movie/play "Camelot", I remember the wonderful little song that King Arthur and his Guinevere sang.."What Do The Simple Folk Do..." I wonder that too!
Nancy, our situation is much like yours. DH still eats at the table but has problem eating some foods, such as spaghetti and green salad, so I now use maccaroni and cut his lettuce up real fine or give him carrot and celery sticks. He has trouble holding a sandwich without it coming to pieces in a mess. He also spends his days dozing or sitting in the recliner with his eyes shut. Hard to tell if he is sleeping or resting his eyes. He says he is resting his eyes. He is also mostly even tempered and calm. He does like to shower and brush his teeth so that is good.
He can't walk very well either. Spinal Stenosis has him bent over from the waist, looking at the floor in front of his feet. He has no trouble yet with curbs. He is having a lot of trouble getting out of his chair and the car. Sometimes I have to help him. I can see having to help him all of the time not far in the future. I have a "lift chair" on hand when it comes to that point but it won't help with the car. He does get up and down dozens of time a day and walking to the bathroom or around the house (restless).
He has been progressively worse for some time. "Just our life, too"
Re: Lift chair. I thought of getting one, but was told that they're not recommended for AD patients because they can't remember how to operate them. I'm reminded of the time about ten years ago when we were in a Laz-E-Boy Store with our 8 year old granddaugher. I tried out one of the chairs just for fun, and had him try it too. He said he didn't like the chair because they were "too slow". My granddaughter commented, quite innocently, "They aren't any slower than you are, Papa!"
I think I have forgotten any other kind of life. Went to my daughter's wedding last month and felt really out of place. Didn't even feel like socializing. Charlie does not like his lift chair for exactly what you said Nancy B. He does not remember how to work it and is afraid of getting stuck.
RE lift chair. Valid reasons but evidentially I think it will be necessary and work. My BIL has one and after you get to his point in life you don't know or care about things like that because someone has to operate the chair for you. It wouldn't work for us now either and may never, however I got it used for $300 and it looks like new so I don't think I will lose any money.
Good point! and you don't have to lift him out of the chair. It's easier if he's partially or all the way up to get him balanced on his feet and pointed in the right direction. (Only a caregiver could understand that sentence!)
We've had one and used one for oh, almost ten years now. He's used it, not I. He doesn't have any trouble going up and down but sometimes he has trouble getting into and out of it at the top of the stairs. I'm glad he's had it and used it all along so there hasn't had to be a change now. He HATES the walker and insists on walking around the house with his cane in one hand and leaning on the wall with the other hand.
I have a friend taking care, most of the year, of his 93 year old mother. She is still alert and active. Both he and I are sociable, go places people. I said the other day, it's like you're kicked back into cruise control, just gliding along, same old same old. And he said exactly, but a car can come out of nowhere and hit you. (a couple of years ago he and his mother were hit dead-on by a hurricane in Florida, the house was a total loss, roof off and everything)
Briegull, HELLO!!! You have an automatic recliner at the top of the stairs?? (Not a bad idea - actually - on certain days!!!) Methinks we are talking about two different animals here.... LOL!
Oh LIFT chair!! No. A stair-glide chair that takes him up and down. We tried out a lift chair before Christmas and he was very confused about it. It scared me that he'd get himself up and then couldn't go down. We got a recliner that has a push button up and down but it doesn't tip you out. This he can operate but he doesn't use it much. *I* like it. Is that what the movie "the puffy chair" was about?
Briegull, I had a HUGE colored picture in my mind of you positioning your poor sweet husband in a power lift recliner at the top of the stairs...and then pushing the UP button. Poor guy!!!! I was convinced you had finally reached the brink!
I was thinking of getting my husband a power lift recliner this summer, because with the Parkinson's symptoms he sometimes has trouble getting out of a chair. We haven't gone to look at them yet.
I have a lift recliner for me. Works great, and I do think even if an LO couldn't work the lever himself, it would still be of benefit because the caregiver can used it to get them up and standing with much less effort. If the LO hasn't progressed too far, they still might work the lever with a little practice. Main thing is keep good batteries in the backup, incase of power outage--it's H**l trying to bail out over the side.,<lol>
pamsc, just don't position it at the top of the stairs. I had the same thought Nancy had. Oh my...... My DH does have a lift chair. We bought it after his shoulder surgery but he never uses it.
Re the lift chair--was looking into it for my Mom, about 10 yrs ago. At that time Medicare would pay for part, with a doctor's note. Anyone have experience with this?
Just don't sit in recliners at Briegull's house! Scaaary!
I liked the idea of the 'motor lift-assisted recliner",...but the ones I have seen are really big and wide. MY DH would get lost in that. He wants a more narrow chair. He has short legs (5'8", 28" inseam) and he looks like "Edith Ann" in the big overstuffed recliners. Remember Edith Ann/Lilly Tomlin's character sitting in the big chair . She would end sentences with ..."And that's the Trufffth (truth) ....
Stores that sell wheelchairs and walkers have good lift chairs that are tested and safe.
Nancy, back to your original thought here - my husband also sits in his recliner with a TV tray, but we only give him a plate with a fork or a bowl with a spoon at a time. When that dish is finished, we give him the other. Otherwise he'll be bound and determined to try to eat soup with the fork from the other plate! Otherwise, you are talking about our life too. I do get to come to work each day, and see people, thank goodness! I couldn't emotionally handle 24/7 like most of you do. I am SO thankful for my wonderful job, and my daughter and grandson who share caregiving with me. It takes all three...he won't take his pills from me (he'll chew them) but will from them (swallor them whole like he is supposed to); I have to put the drops in his eyes - he won't let them; my grandson and I alternate the bath/shampoo, but grandson does the shaving. Sometimes, when he picks up something he is not supposed to have, it takes all three of us to distract him and get him back to his recliner to watch a movie!
We do go out to eat on either Friday or Saturday night to a restaurant he used to love (there are 5 on the list) and we know what he always ordered and order it for him. He concentrates on eating while we eat, visit and enjoy being out! This is our normal...
WHEN (!!!) we go out, I usually go to places that are not crowded - or slightly before the dinner hour - and I order for him as well. Usually foods he can eat with his fingers without too much mess. such as Fried shrimp (the last time he didn't know what to do with the tails...and was becoming agitated, so I pulled all the tails off of his shrimp and put them on my plate. ) He will eat a baked potato with his fork, so I ordered that to go along with the shrimp. NO salad, he'll eat that with fingers. I was dying for some good fried Gulf oysters, and I had my fill for the time being. Usually, I call our favorite restaurants and get 'take out'.
I order for my husband as well. Right now there are only three places that I take him. In time we will be down to the dinner which seems to be able to deal with others like him. Very homey place, with lots of regulars.
my Dad had a lift chair and suffered parkinsons and beginning of AD -it helped him alot get into the standing position. mom got hers thru medicare and dr note and i think they paid half of it. was a while back.
our kind of normal is much like all of yours. DH is feeding himself well and enjoys his fav foods. fried shrimp is one of them and like you nancy i have to pull the tails or he tries to eat that too. french fries or onion rings. and he does like salads. we went to pappadaux a couple of wks ago with visiting family and DH did well and everyone commented how well he ate. we ordered the sweet potato pie ala mode. well he needed no help gobbling that down and we waited til the last bite was scooped up with his spoon. he never needs encouragement to eat sweets. i do find having him in the lite wheelchair helps avoid his anxiety over moving and sitting in hard chairs.and so thats how we do restaurants now. he even seems to tolerate the noisy ones which is a surprise. naps during the day and then his usual hr+ pacing and visiting the guys int he mirror..alot of houswork for me during the week as well so i stay busy. divvi
briegull-I was alone in Crystal City underground in DC. Saw a Chinese buffet and decided to try it. Nothing was labled. All those sophisticated folks around and no one to ask. I put a bit of everything on my plate including this pretty, inocent looking green stuff. Once seated I took a forkfull just plain so I could savor the taste. I haven't felt that much pain since.
divvi-I actually do like it very much-but in moderation. Can't eat sashimi without it. It's sorta like you can't eat raw oysters without hot sauce. If it wasn't so off topic I'd tell you my Jewish grandfather's experince with raw oysters.
Don't get me in trouble with Joan. Kosher Jewish people do not eat shellfish. As immigrants they tried hard to fit in. Being from Russia rye bread was a staple. As they were poor they ate a lot of bread with every meal. Grandfather was offered raw oysters as a treat and he was going to eat them no matter what. According to his tradition to eat everything with bread he put the raw oysters between two slices of bread and ate them as a sandwich. I imagine they squirted all over the place.
I guess that sandwich would be called a Hebrew Po'Boy?? whatcha think? . Get it??? ...........That's the funniest thing I've thought of for ages...I crack me up. :-) Just bear with me, this will pass.
Pappadeaux (a Cajun Seafood Restaurant) is great!....but it is just tooo noisy for my DH. The last time we were there, he was getting wild eyed by the time we finished,...he couldn't hear anything said at the table and we vowed to not go there with him again. All of the Pappas restaurants are loud...Pappasito's (Mexican), PappaMia's (Italian), PappasYaYa (Greek) - but apparently we're in the minority...their places are always packed! In my golden years, I much prefer quiet places for dinner without that loud heavy metal music blasting. (selected by the staff, not the patrons) And, that is my NEW KIND OF NORMAL...seeking peace and quiet at any cost.
Nancy B, you ought to try one of those noisy restaurants with hundred horsepower hearing aids like I have to wear-- and better still on family night when all the small kids are shrieking -- now that's real bedlam! I find that places like TGIFridays are the worst -- clattering dishes and chatter from the crowd of animated yuppies rattling off all that hard tile with no carpeting or drapes or anything to muffle it -- drives me nuts!
Gchipper, my DH wears hearing aids (or -past tense - wore them until he lost them recently) .. We bought the best we could buy, with the little button far down in his ear to click from personal conversation to restaurant to listening to voices via speakers (church, speeches, etc.). Duh! He can't remember where he has it clicked on and an 'outsider' sure cannot tell..
I'm sure those hearing aids didn't help in Pappadeaux.... He hates loud places.
I'm convinced he threw his hearing aids in the trash. There are NOWHERE to be found, ..we've checked pockets, drawers, shoes (in the shelves of his closet) every-freakin'-place in the house plus everywhere in the car, .... He tossed them in the past, and this was our third set the insurance replaced. Almost $6000 a pair. Do you have advice for me re: replacing them or not - or with what? He can hear me and the TV if it's turned up a little louder than usual.
GC if you want noisy try Chili's on the last day of school. The screaming and yelling made my ears ring. The wait staff did nothing to quiet the noise. By the way-it was the teachers that were doing the celebrating.
I think Marsh's wife ate hers... My husband can't stand shouting, period. Not the crowds outside the Today show, not his CNA talking loudly over the TV noise, not arguments between the kids way back when. I'm sure it assaults his ears but has forever refused to wear a hearing aid. If I took him to a noisy restaurant he would be in a foul mood for days, and I'm not sure I'd blame him!
<<Almost $6000 a pair. Do you have advice for me re: replacing them or not - or with what? He can hear me and the TV if it's turned up a little louder than usual. >>
Nancy B, if he can hear you and hear the TV if it's just turned up a little louder than usual, he doesn't need $6000/pair hearing aids. That's what I have to pay because I'm profoundly deaf (from taking massive doses of Streptomycin back 50 years ago when it was the hot new antibiotic for treating staph infections) and I need the best that technology can provide, but a good friend who used to be a millionaire, and is only about as deaf as your husband, does fine with a pair that he bought mail order from the back of a magazine for under a hundred dollars. I can get details from him if you'd like -- he did give me some of the literature once, but I threw it away. As for me, I'm so deaf that my DW has to place her mouth just inches from my ear and talk LOUD for me to hear what she's saying if I don't have my aids on. We handle the nightime potty patrol trips by sign language.
I'm serious about this-buy a cheap stethescope, put the ear pieces in the deaf ears and speak into the diaphragm of the stethescope-it really works. Now can someone please help me with a keyboard problem. I am trouble seeing it. A fluffy orange tail is waving over it. One of my daughters' cats sat on the keyboard on her week old company laptop and even tech service can't fix it.
love that idea bludedaze! haha. i have one too i still use around here. i have a cheerleader plastic megaphone::)) it works GREAT! i can broadcast from the other end of the house and gets DH attention quick. he has no problems understanding me either -divvi
hey you do what ya gotta do! and become quite inventive along the way.
Some friends bought a set up that had headphones attached to the TV. They could either turn so she heard with the TV speakers while he turned his headphones up or she had silence while he watched TV.
You know that hearing thing they sell on TV where they show listening in on your neighbors - wonder how that would work for those with just mild hearing loss?
G'chipper, are you serious? We went to an MD, Audiologist place...and he had his ears tested. YES, they said, he needed hearing aids. DH said he didn't want to wear hearing aids, and doctor said today's hearing aids were undetectible (note to self: and un-findable when lost!) - he measured DH's ears and made molds with Play Dough of the inside of his ears. Next visit several weeks later we were presented with these "teeny, digital, hokus pokus, invisable (I can attest to that!) kidney bean size, flesh colored hearing aids and they were about $5800 for the pair. I am soooooooooooo tired of being ripped off... and now this was by a doctor, but how did we know. That was pre-diagnosis when everyone thought his dementia was results of severe bleeds, deep shock and a few TIA's. He is NOT profoundly deaf. He just can't hear worth a darn. There is a difference.
Nancy B, audiologists are in the business of selling hearing aids, just like auto dealers are in the business of selling cars, and most will try to convince you that you need the latest and greatest (and most expensive) aids with all sorts of gee whiz features -- and it's hard to say NO. While it is a fact that some of the gee whiz features could theoretically "enhance the listening experience", in actuality the small improvements are of little or no value to most wearers, and would certainly be of no practical use to many of our ADLOs. The principal selling point of the small kidney bean size "completely in the canal" models would be cosmetic -- they're near invisible; but one price you pay for cramming both microphone and loudspeaker in such a small space is that you tend to get feedback (whistling), necessitating much more careful fiting to the individual's ear and even special circuitry designed to minimize feedback -- both of which increase the cost. Another real disadvantage would be that it's much harder for a fumble fingered person to change batteries or use a volume control or whatever in such a tiny instrument, and as you've pointed out, it's easier to lose them. And maybe more of a temptation for our ADLOs to chew them up or stick them up their nose or whatever.
I'll try to find out tomorrow some specifics on the low cost "one size fits all" mail order aids that my friend now wears, but in the meantime you might google Songbird hearing aids -- at $80 each they're basically throwaway, and might be all your DH really needs.
Where were you about three years ago when we bought these little gold nuggets? I wasn't at a Sears or a Miracle Ear place...I was in a doctor's office, for goodness sake. Now I know that we were truly taken in... You are absolutely right, I have had to change those ittsy bittsy batteries for the past two years. They are the tiniest little things and my fingernails can barely handle them. I want his next hearing aids be the kind that use AA batteries!!!! Do they make those?
Yep, he's the one that put one so far up into his nostril, it took me about 30 minutes to get it out. Needless to say, he yelled and fussed and swatted at me ...but the option was sitting in an ER for several hours. Those hearing aids were about the death of ME!!
I am sooooooooooooooooooooooo upset with ME for getting duped the way I was. I have been duped by an Air conditioner repairman and a computer set-up/wiring expert in the last year as well. I need a bodyguard!! Or so it seems.
My DH"s hearing aides had to be replaced recently and yes, they were in the $6,000 range. He still cannot hear me unless I yell and repeat things several times. I believe his mind does not process what I am saying. He is hiding his billfold , hearing aides, and sometimes pictures because those people that only he sees might steal them. He woke me up about 4 o'clock the other morning to chase these people out of the house. I tried to get him to go back to bed and he wouldn't so I left him up and went back to sleep. The next morning the hearing aides were gone. I spent 4 hours looking for the darn things. Every drawer in the house, every waste can and every coat pocket was searched. I finally gave up and knew I would be yelling all the time and you can not be a sweet old lady if you yell. I made a trip out back to the mailbox and as I went by I noticed his pajama top in the back seat of the car. His hearing aides, sunglasses, and flashlight was neatly laid on the back seat..Thank goodness he doesn't have car keys and he has forgotten how to raise the garage door. Wonder what tomorrow will bring.
Well, there you go. Right down my path. Been there, done that. Found the hearing aids in all sorts of odd places. One is red and one is blue, and he'd wrap the red one up in a kleenix and throw it in the trash. Thought it was a piece of candy. I've found them in lots of odd places, and I'm not giving up. I try to keep calm, but it makes me sooooo mad when they turn up LOST again. I am mad at the situation...not at him. If that makes sense?? He cannot help it.
I gave up on the hearing devices after the second set. The first set, I WANTED him to have because he needed (I thought) to understand what was being said at work. He wore them or made a temporary effort to wear them until I found them in various places. jacket pockets ..one here and one there. (Those were 5,000).. THEN after a year HE wanted them..wanted to go to one of those traveling hearing places. We went..I sat while he did all the testing and the traveling hearing person did the calculations and he agreed to pay 7,000. for this new set.. He never could manage them on his own.. AND once they were in place, well, he could and did take them out. I just put em away...lesson learned.. He happily handed over 7,000 and I SAT THERE and watched.. knowing how it would end up.. hand me another one of those fantastic drinks please.
I have worn two hearing aids for years. If you want to get the best buy on hearing aids go to a Costco Hearing Center (not all stores have them) You can get a set of state of the art hearing aids for about half of what you would expect to pay at other dealers. Their Audiologists are on salary, not commission. I have bought my last two pair from them, I have been very happy with the price, quality and service. Their fitting and tuning service is top notch.
I can't imagine the issues a person with AD would have with hearing aids, It may not be worth the battle if they have never worn them before, hearing aids would be very difficult adjustment for them. Their world will go from very quiet to very suddenly noisy. They will hear noises and sounds they have never heard before. It is a very difficult adjustment for a normal person.