Everyone, including his Neurologist, tells me "It is time". I can't accept that. It would break his heart, (and mine) and I'd feel so guilty. His children live out of state and are not able to help. He sleeps, in his recliner or in bed, almost all day. He doesn't talk very much, One of the big problems I face is that, because of his condition, I am housebound 24/7. I have no life. Friends and family no longer visit us. I wish I knew what was going on inside his brain. Would he know? Would he be miserable. Would he get worse? I tried to get him to visit one facility for only 7 days so I could visit my family out of state. He adamently refused to go. He was furious at me. His doctor advises that he is in the moderate to severe stage of AD. He cannot answer the phone, operate a remote control, turn on his electric razor or toothbrush and requires assistance cutting meat on his plate, knowing which dining utensil to eat with, (using a fork in soup, for example) I've noticed that most patients in Memory Care Centers are women, and I am told that most men recognizethey cannot take proper care of their wives, but because women are nuturers and caregivers by nature, they will will keep 'at it' as long as they can. When I have visited facilities, I shudder. They seem so institutional, which they are! He is 81 years old, and I'm 12 years younger. We've been married only 18 years. I just don't know what I should do. How did any of you make this difficult decision. Please share. I'm at the breaking point, and there is no easy answer.
I would like to know the answer to that question myself. DH will be 83 in May. He can answer the phone but not make calls. He 'sometimes' can use the TV remote. I've not noticed he has any trouble with his food. He doesn't use an electric toothbrush or razor. He's really good about brushing his teeth twice a day and he almost always flosses at least once a day. He shaves maybe once or twice a week. It's really hard to tell. He hasn't seen his neuro since last May. He did see his PCP in December. Said he doesn't want to go back there. I asked him why and he told me he was in better shape than anyone he knows and doesn't need a doctor to tell him he's healthy.
I feel I can leave him for 1-2 hours but that's it. If I know I'm going to be gone longer, a friend picks him up to go play cards or our son takes him to Home Depot.
About half of the residents where my husband lives are men. This is a unit with the severely disabled. They are there for safety reasons. In the more open unit the census seems to be mostly women. Every one on Bill's unit require total care. The supervision is great and all the aides are well trained to divert rather confront aggressive behavior. I feel it is a better environment being with other people than being home alone. That doesn't mean I am happy with the situation.
I am afraid when I DO have to move him to a facility, he will be so angry he'll have a heart attack. He had a bad temper before he came down with AD. I cannot tell you how wild and crazy he was the week after having surgery for the broken hip. They said it was due to the anesthesia, - but here it is 9 months later, and he has never improved to where he was prior to the accident. One day I feel so good about being able to take care of him, and the next day as I'm on my hands and knees cleaning up the floor from a tossed dinner plate filled with the spaghetti he "didn't want", I'm waivering.
Nancy B - I do not have the patience you and some of the others posting here. I would call the Dr. and find out a med to use to keep him calm - If non was available I am afraid I would be looking at alternative arrangements. I would never stand for my children trantrums and my patience has not improved.
Mine is 84, in stage 6, physical limitations not related to AZ mean that he can't walk much. He can eat alone, use a knife to cut up an apple or an orange, but loses his way (or chooses to lose it) on the way to the bathroom, wears depends. If he couldn't get his support stocking on alone, if he couldn't get himself in and out of the tub/shower even with my help, if he had the blank look in his eyes - then I'd be in trouble. As it is I do have some relief - a CNA once a week, a daughter who can help.. so for now we're hanging in there.
Today we looked at a Sherlock Holmes video. He used to be quite the S.H. buff. I said, do you know what the title of this episode, The Empty House, refers to? He said yes, it's a statue of Holmes in his Baker St. lodgings. And he was right! I may have seen the TV episode before, but of course don't remember it. And then this morning he said, my wife sets things up very nicely. I realized he was in one of his confused days, and said, what is your name? He had trouble remembering it until I said, what are your initials? He knew those instantly, so I said what do they stand for? And then he could explain his name. Not quite ready yet.
Our neurologist does not use Stage "numbers" for Alzheimer's. Is there somewhere the stages are listed..by number. Briegull, I read your description .. Foster cannot use a knife, but he is not incontinent..does not wear Depends. He just sits in his chair with his eyes closed. Sometime he is asleep, other times he is not. He is not interested in anything, not books, not TV (except he wants it ON!) - It's a challenge to get him out and into the car. He never wants to go anywhere. I have no idea what stage he is in. Today was a calm day, no outbursts,...I must have been really "good" today! :-)
I just looked at the Alzheimer's Association web site and they list the stages by numbers. I would say my DH is a strong 5, with a little bit of 6. That's an easier way to explain where he is. Thanks.
Nancy B yours sounds a lot like mine except he is ready to go whenever I say. I don't put him in difficult situations but believe it is important to get him out of the house every day. He also does not want me going without him so that is a extra incenitive. I don't make him change his clothes and he can wear his houseshoes.
The first thing I did was get him hooked on going out to breakfast at McDonalds and drinking their iced coffee. He loves that like a child (also me). Then I started making short stops to run in the drug store, etc. and leaving him in the car. I worry about that some but I check his mood, he has spinal stenosis so can hardly walk for pain. I usually try for a couple of hours and maybe not have to do the bathroom trip. Usually we go into Mc to eat and that gets him seeing people but sometimes we will eat in the car. This week I got him into a couple decent resturants at 2 in the afternoon for lunch and he enjoyed that. He wears his sweatpants and a jacket.
Imohr, I also take Foster along when I go to the grocery store. We have a little dog, and he takes him along. He doesn't get out of the car as long as he has the dog to play with (or sleep with) while I am inside. Still, I go in and rush around like crazy! Silly as it sounds, I had an opportunity recently to go into a lovely new grocery store alone. I strolled up and down each aisle when shopping. I had a wonderful time. I saw so many new items on the shelves! I think I was in the store for almost 1.5 hours. So much fun!
We all need to enjoy these litle moments when we can! Only those who walk our walk would ever understand!
I have learned to pick my battles. What he chooses to wear is one I do not fight! On a recent trip to the doctor's office down in the Houston Medical Center (1 + hour drive), I selected his nice black golf shirt and trousers to wear. We were almost out the door when I noticed he had gone back to the bathroom. There he stood - in front of his sink - preparing to shave AGAIN. He had green toothpaste smeared all over his face instead of shaving cream. It was on his shirt collar and drying by the second. I am here to atttest to the fact that dried toothpaste is identical to a dry clay mask! By the time we got it washed off his face with lots of soap and warm water, his face was red and irritated , he was agitated and refused to change that black shirt with green toothpaste around the collar. This was a battle I did chose to fight, we did chang his shirt and headed out the door 15 minutes later than planned.
As we drove out of the driveway, I glanced in the rear view mirror. I looked as though I had been through a major windstorm! My life is much like it was when I'd try to keep three small children neat and clean on Sunday mornings before we left for church.
I do think it's easier on those of us who raised children - maybe especially more than one child, since there's so much variation. We're like moms sitting in the park comparing notes: who's trained, who's not, who won't talk to strangers, who wants to play doctor... And I'm not talking down about them, I just am describing reality.
Briegull, you are sooo right! This entire website could be read and understood by mothers of young children. Dealing with their likes and dislikes, cleaning up their messes, trying to get them to eat nutritious foods that are not "sweet", - we are mothers all over again.
I was told by a NH administrator that it's really OK to let them have their dessert first, because it gets them into the "eating mode" and they will continue on eating the meat and veggies without thinking. If they have to begin with the green beans and chicken, it may not get the taste buds going as quickly. Makes sense to me...and that's an easy battle to let him win! Whatever works!
Nancy B, DH was diagnosed with FTD and doctors, nurses, attorneys, geriatric care manager all recommended a dementia facility. The problem was DH is relatively young, 58 and physically very healthy, and most facilities were concerned that he would be a flight risk and a potential danger to other patients due to his aggression. I must have looked at 30 different facilities; most residents are women and the median age is low 80's and most of the residents were at a more advanced stage than DH. I did finally find a facility that only takes dementia patients (Arden Court in NJ, MD, NY and CT) where the population was 50% male and a bit younger than the typical profile, where the residents were higher functioning, but it took several months and repeated visits to find the right facility. In the end, I made the decision to keep him home where I thought he would do better, and I believe he has. I do have a 24/7 live-in at the moment which is partially covered by LTC insurance since he does not qualify for Medicare yet. It is a difficult decision to make and even harder to find the right facility. Placement at this point was not the best option for us but I know it is in our future. As one person told me, nothing has to be permanent. You can chose to place him and if it doesn't work, you can bring him home; or you can decide to keep him home and if that doesn't work, you can place him. Keeping that in mind, helped me with the decision. Do what you feel is the best for both of you.
Nancy B, boy do I know what you mean about putting toothpaste on his face. LOL. I guess that's why they call it toothPASTE. Mine has done that twice. Now I put some on his toothbrush and put the tube away.
LFL I also had a placement problem-young, healthy, aggressive and a flight risk. I've heard good things about Arden Court in Florida. If you can find a dementia only facility that would be great. My husband is in a dementia only ALF with Hospice and it has worked out well. Well after several escapes and major med adjustments. This isn't easy.
Carolyn, we're "even" on the toothpaste face mask deal, but bet you can't top this one. DH wears the tiny hearing aids, one is red and one is blue..that fit inside his ear. One of the many times he lost his hearing aid found me looking all around his recliner and in his pockets because when I'd get close to him, I could hear it 'ringing". (HOT was when I was close to him, COLD was when I moved away. It was not in his chair, under his cushion, around the sides. It was not in his shirt pocket, not in his pant pocket. Up close..riiiiing! step back....silence. I had him pull his shirt out from inside his pants, just in case it was between his shirt and belt. Nope! I could hear it ring the loudest when I put my ear to his chest. When I did that the last time, he had to look up toward the ceiling...so my head would fit beneath his chin. I lifted my eyes, and THERE IT WAS!!!!! Up inside his NOSTRIL...way far UP inside his nostril. It took almost 30 minutes to dislodge it. I was dreading walking up to the Emergency Room Desk and announcing to the nurse that my husband had a hearing aid in his nose. We were spared that.
Someone told me that there was only one other place he could have put it and I should be grateful he chose the nostril. I'm afraid we would have had to declare it LOST forever if he had chosen the other orifice.
You're correct. At the time, it's an ordeal. So far, every soul I've shared this with thinks it is really funny. Guess they should have been here. No one laughed at the time.
A few weeks ago my wife was "mouthing" something. I finally got her to spit it out. It was her hearing aid and she had bitten it in half. At least she hadn't swallowed it. I decided then that I would not get her another since I had so much trouble getting her to keep it in.
Isn't there some evidence that after a certain point they don't NEED the hearing aids that much? Mine always refused to get one (we tried once and he never wore them) and complained he couldn't understand what was being said. Now he doesn't say that much at all. When he watches movies (usually British comedies, or operas) there's a choice to have subtitles and we put them on and he likes them - but he seems to hear the news just fine. Gets it very confused, but hears it fine. (Today he listened to Zubin Mehta conducting the Israeli philharmonic in the Huberman Festival recording. He enjoyed it, called our daughter to come hear it. Told her that it was ZM conducting the Israeli philharmonic. Fine. In the auditorium of the auto club of southern California. He's got a fixation on that auto club!!)
I agree Briegull. And along with this, is all the medicines they give him...He takes medicines for a number of things, none of which cause him pain. Mostly to "prevent" this or prevent that. He takes Aracept (off label) twice a day..Namenda twice a day, seroquel 50 mg, twice a day, PLUS cholesterol meds, a blood thinner to prevent clots, another medicine to offset the former, to prevent hemorrrhages, Folex (a very expensive, non-covered - prescription only folic acid /vitamin supplement) Flomax to aid in his urine flow (go figure!) and the list goes on. Why are we doing this? So he can live in darkness another year or so? But, I put those hearing aids in his ears every day, give him his meds twice a day, have an appointment with an opthalmologist to check his cataracts, .... I don't have to tell you all of this. I just wish we could keep them safe and comfortable and happy...and not have to fight the med fight every day. It's just one more ordeal I'd just as soon skip. I probably sound terrible, and I don't want to sound that way at all. I'll always do what I'm supposed to do, and tease and prompt him to let me do my job.
i also quit giving his HAides after the loss of the 4th pair. the insur wouldnt cover another loss and they were 4k a pair. so now i see his hearing has worsened but not sure it maybe part of the AD as well. i think alot of what i see him faulting in mental capabilities has to do with just not being able to hear. if i get in his face and speak loudly and slowly he follows commands fine - i know its worse now as he stands in front of the TV and seems to follow it better that way. divvi
Okay, I think we've been through this other times - Sunshyne, can you "top" it? But a lot of us have decided to DROP the cholesterol meds, the blood thinners, the Folex.. (probably NOT the Flomax). We are no longer trying to prolong life. We aren't actively trying to END life, and we certainly don't want to drop the meds that control behaviors or make them comfortable in the moment (hence the flomax). But stopping the possibilities of heart attacks, or strokes, or cataracts - those are not necessary.
If you think about it, fifty years ago, NONE of these meds would have been available. Our spouses would have been described as having "hardening of the arteries" or "a little senile" and been tucked away into a bedroom quietly.
As I've opined on other threads: most doctors do not realize that pills cost money. And that not everyone has insurance large enough to cover whatever the cost! I really believe this! but there's no reason for us to let them live in ignorance.
I remember years ago when we were in a dining club. One of its members, a dear sweet man most of the time, and a great cook, forever told racist, misogynist jokes. Finally I got really tired of it, and just flat called him on them. I said I did not like to hear them, did not think they were funny. He was offended, of course, but others in the group thanked me. And at least thereafter, he told "generic ethnic" jokes. (the same jokes are told about Polish people in the midwest; Portuguese, in New England; Texas Aggies in Texas, etc)
Likewise, the doctors may well thank you for bringing the cost of the meds they prescribe to their attention. It's worth a try anyhow.
Good grief! Am I the only one who had to look up the definition of misogynist? I swear, I am forgetting how to talk to a normal person with above average intellect. I love gutsy women! Is your name Brie? Interesting webname!!! Reminds me of the OC/perfectionist wife on Desperate Housewives. Misogynist/Misogynist. Ok, got it. Just hope I will NEVER have to use that word with anyone I know. :-)
no my name is not brie. Once upon a time my family was having a picnic on this island in Maine that we go to, Monhegan. Gulls were coming around to scrounge. There's a good cheese shop (in Wiscasset) on the way up from our home in RHode Island and we had gotten some brie cheese. We threw a bit to a gull and I managed to get a shot of him standing on tippy-toe eating it. So HE was the brie gull. Then a friend who was in her eighties and who called herself the Grey Gull turned over to me the publication/updating of a little book about the island. She was grey gull, so I became brie gull, some 25 years ago. You can see a picture of the brie gull at www.briegull.com. It is easier to spell than my real name!!