I know I've said it many times before that my DH isn't too bad right now but he has irritated me 3 times already today and I am NOT in a very good mood. Sometimes I think it would be easier if his memory went completely. Plus he wants to go to Ohio in September to see his sister. I don't want to do the 12 hour drive and have 2 dementia patients to handle. I do not and never have had a lot of patience and I'll end up blowing my top.
Well, that's another vent over with. I am going to take a shower and see if I can calm down and relax.
Jean, I know how you feel. I keep hoping that I get more patience. Sometimes it almost feels like DH wants to get me P***ed off. It's the same thing every single morning from the minute his feet hit the floor. There was something on here a while back that I cut out. It would refer to what our DH would probably be saying to us. Hope it helps me someday. The middle of the day everything is pretty normal. Then things gets weird again at bedtime. He sleeps in his briefs and now he puts his wallet inside his briefs because he thinks "those kids" are going to take his money. (Not much in there anyway. LOL)
Jean21, could you just "postpone" your September visit for one reason or another? You are too "sick" to make the trip, your doctor doesn't want you in a car for that long, etc. Just any creative postponement? A urinary tract infection you got at the last minute, whatever.
Carolyn,Your last few words made me laugh. Thanks. Most of what my husband does isn't that bad compared to others on this board and his memory isn't TOO bad. It is the piddly things that get to me. I am going to quit asking him how is when he gets up in the morning because he usually comes up with something of why he couldn't sleep the night before. Yesterday morning it was because his stomach was hurting and "he looked everywhere" for the OTC stuff and coulcn't find any. Well, DUH try the cabinet under the sink in your bathroom where I found almost a full bottle of Gaviscon and I don't know how many Pepcid. This morning it was because there was a buzzing noise in his ears and he couldn't find anything for that either. Apart from becoming clairvoyant I think he is becoming a hyperchondriac. If we had anything for ears chances are it's in his bathroom if we don't have anything he'll want me to get something at Walgreens. It's these type of things that irritate the H..L out of me. Tomorrow morning I'll try to remember (lol) not to ask how he is.
Sunshyne, Not only is my SIL not mad (at the moment) she sent me a birthday card. It was early but I am surprised she remembered my birthday is in August. Here is the kicker....inside she wrote that when we come up she is going to give me some money "A Whole Bunch". No one has told her when or if we are going up so I am thinking it could be bribery. LOL Maybe she'll give me enough to run away.LOL again!
Well, my husband ordered something off the internet recently for the ringing in his ears. Says he has had it for years, but he has never mentioned it to me. So instead of taking his multiple vitamin, he is taking this now. ?????
Carolyn, When you say "not much there" you were referring to money I guess. lol
Jean, I've never had much patience either. I hate to tell you things aren't gonna get better. I now have a patient and no patience. My DH is in stage 7. He can walk around and still uses the toilet (most of the time). He went in there couple hours ago, about noon, and when I went an hour or so later. I see he had peed in the sink. (I didn't show him the toilet like I usually try to) sooo I disinfected the whole area. I have patience for that, but when he points at his t-shirt a dozen times and can't tell me what he wants or what about it, I want to throttle him.
Well, if there were anything a doctor could do, I'd be encouraging him. But his brain was fried, there's no Aricept or anything for that. Did a lot of research this morning about the prognosis/life span for his type of cancer, and found that he's in the "lucky" 5% that lives past 5 years. AND if there is recurrence, they can't do whole brain radiation again. AND it is doubtful there will not be recurrence.
I'm re-evaluating my situation. I have only used his credit card for things for the house, to get it ready to put it on the market. Excuse me, HIS house. Things like mulch, etc. I called his credit card company this morning, & talked to a human. No payment. They weren't supposed to give me any information, since I am not an authorized user (thank God) but I told them he had a very bad memory problem. He had told me he had made a payment on his credit card, but each time I called the card it said, no payment received. He had a limit of $25,600. Now the card is at $26,100.
So, I told him when he got home from tennis, I had tried to make a purchase at Home Depot for some more mulch, and the card was declined. First he told me that he hadn't paid enough, then quickly changed that I haven't made a payment. I asked when do you plan to make a payment? WHEN THE HOUSE SELLS. Told him that could be years, & he said they'd just have to wait.
So I googled, and as long as I am married to him, it will not affect my credit score, as I am not an authorized user. Divorce vs. waiting for death?
Kitty, there may be meds that could help control his temper. (And from what I read about Virginia, you do have claim on the house, since you put so much labor into fixing it up, and didn't you also fix up the original house that was sold to purchase this one? Those things count.)
This is the original house. There have been 2 screwed up offers/his handling it. His temper has way subsided since I just barely speak to him except weather, cat, news. I am almost mute. Thanks Sunshyne.
Getting back to the original topic of not making it as a caregiver - I continually wonder, and think I have posed this question before, if I (or any of us) would be better at this or more patient if it were a physical problem. When Sid was in the hospital with pneumonia four years ago, and then came home to continue his recovery, I had much more patience, and did not mind caring for him.
With AD, it's the personality changes, mental functioning changes, and lack of reasoning ability, that try the patience to the breaking point. I have found that the more I understand the disease from the perspective of what is happening in the brain, the better I am able to deal with it. Being "able to deal with it" is a relative phrase. Mostly I'm lousy at it, but somewhat better when I understand what is happening in the brain.
I was a great caregiver with my husband's cancer. Drove him to doctor appointments, found specialists for him. Made sure he ate & tried to keep him hydrated. But then, there was hope. I think the hopelessness that things could possibly get better is the toughest of all. I didn't mind at all either, I was glad to do it. This brain thing is so different.
Joan-you are so right. Physical ailments elicit more sympathy. When woman started having vaginal hysterectomies they were expected to get right on with their lives. When they had a surgical incision and surgical dressings they were cared for.
Joan, I had patience when my husband was in a car accident and had broken ribs. That was the one and only time he missed going to work. I also had patience when he had his prostate removed because of cancer and he had to wear a bag to urinate. I even made him some p.j's using velcro on the side so he could put them on and take them off easily. With AD there's nothing I can do for him and I just seem to lose it over something trivial. Maybe that's the problem, knowing that there is nothing you can do to make them better.
I agree. The physical problems I could deal with. When he had his hip replacement, I was able to do everything for him and never got angry. It's the same questions over and over and over that drive a person crazy and then he keeps repeating the answer. Sometimes I feel like I'm living with a parrot. Yes, LeeLyle, I meant money. Of course, I don't think "those kids" would want the other either. LOL
As Joang mentioned in another thread, or was it someone else? I get confused sometimes cuz I'm reading all the discussions. They (DH OR DW OR LO) aren't like children, where you can say no no or distract them and explain why. Eventually a child will learn. AD patients are going the opposite way. No matter how much you repeat, sadly, they will never understand again. It gets sooo frustrating!! It extremely hard, because its not a job. It goes on and on. Nurses, aids, and others in the caregiving industry, at sometime get to go home or whatever. Also, the patient isn't someone they have loved (like forever) and therefore the emotional attachment doesn' figure in the equation. No, AD caregiving isn't for sissy's, to paraphrase a Bette Davis quote. Steel yourself, Jean21!!
This topic really got me going, so I wrote a blog about it for Monday, August 18th. However, since I cannot be sure about my electricity with the impending tropical storm/hurricane coming or not coming, I am posting it tonight (Sunday). It should be up by 7:45 PM ET. Refresh your browser if it does not show up.
I think the refresh button takes you from the current version of a page you are on to an updated version. Sometimes pages don't update immediately. Note that I said "I think"!
Janet, that's exactly right. If you hit the "back" button, it can take you to the "old" version of the page that you'd already downloaded. "Refresh" takes you to the latest version.
Joan, I've been watching the hurricane warnings like never before. Keeping my fingers crossed for you. For purely selfish reasons, among others!!!
I don't remember who posted this before, but I cut it out and thought it was worth posting again.
I need you. Do not ask me to remember Do not try to make me understand Let me rest and know you're with me Kiss my cheek and hold my hand I'm confused beyond your concept, I am sad and sick and lost All I know is that I need you to be with me at all cost Do not lose your patience with me Do not scold or curse or cry I can't help the way I'm acting Can't be different, though I try Just remember that I need you, that the best of me is gone Please don't fail to stand beside me!!! Love me till my life is done.
Thank you. That made me cry, but I think it illustrates my point very well - If we understand the disease from the AD brain's point of view, it gives us a bit more patience.
I'm going to put my comment about the Energizer Bunny here, because it doesn't have its own thread.
I told my therapist I was seeing her because I wasn't going to get sick being a caregiver. It is my pattern to go and go and go and finally collapse. Not this time around.
I'm learning to say yes when people offer places for me or my husband to go. Right now I don't actually need other kinds of help, but I'm taking note when people offer to help. And sooner or later I will need help and I'll have a list of people who have offered. I almost needed someone to go grocery shopping for me when I got a cold a couple of weeks ago, but not quite, but that will almost certainly be the first thing I will be asking for help with. Or it might be minor handiman stuff that my husband isn't able to do. That hasn't quite come up yet, but it will one of these days.
I started by trying to notice if I had done anything just for me each day, by trying to be aware of the things I am grateful for, and I've been working on the rest of it. In many ways, although my husband is sicker than he was last November, we are both better off than we were back then when he was building his cave and isolating us in it.
Sometimes I wish there were some kind of eraser that I could use for those times I was horrible at coping. These last few days have been horrible - not enough sleep and having to deal with so many end of life issues. I found myself getting so mad at my DH when he wouldn't quit all the pacing he did three days ago. It actually went on for 11 hours and I had to watch him to keep him from falling and seriously hurting himself. Now that I have the little booklet, "Gone From My Sight" I see his behavior is to be expected in the last couple of weeks of life. But, even if I knew that I'm not sure it would have helped me have patience with something that felt like an eternity. I would love to try caring for him again but feeling rested and see if I could better cope! There is the sadness that my DH never got to that stage Kubler-Ross described as acceptance, so he never thought that he is in the dying process. Dealing with death when AD is involved is so different from some with cancer, for instance. It is too late now since all I have left is a body in the end of life dying process. He is in his own space that doesn't include me. All I can do now is give his meds, and keep him as comfortable as I can. Soon he will be gone.
Speaking of this 'patience' thing....Had kind of an interesting thing happen yesterday. We went out to our son's place about 40 miles from here. We took 3 buses to get there. It took exactly 4 hours from our door to his. It was about 95 degrees and I don't have a clue as to what the humidity was. But enough on the weather.
They have a new dog--cute little thing. Very playful, etc. DH was very taken with the dog. Kept asking "How long have you had this dog?" 2 months, they respond. I'm not kidding you. If he asked once he asked no less--no less! that 50 times that afternoon how long they'd had the dog. Our son and his children have not seen DH for 2 months. He has really deteriorated quite a bit even though he is on Exelon patch and Nemanda. Son could not get over it. He asked me if Dad was kidding around. I told him, "No, not at all. That's what happens every day, all day. Get's tiring, doesn't it?" Our son asked me "How can you stand it. It would drive me crazy." To which I told him that it was getting really close and I'd sure appreciate all the help I can get i.e., take him for a drive, keep him overnight, come and visit frequently--not all him. There are 5 kids in this family. I can hardly wait until tomorrow morning when the rest of the kids hear from him. You see, blessings some times come in disguise. I'll keep you posted.
We have the children and the dog for 2 days. He has asked me more than a dozen times where everyone is sleeping. I keep telling him the same thing. Sheeze. If you don't hear from me, you'll know I went crazy. :) smile
Fran, I hope you are able to get some rest to be better able to cope with the horrendous stress you must be under right now. I wish that there was something to say.....or a wand to wave and make it all better.....
You and your husband are in our thoughts and prayers as you go through this.
A long time ago when DH was first diagnosed, I read that if he didn't ask about the dx it was better to not tell him or at least go into details. DH never asked. I kept trying to leave the idea for discussion open, but he never went there. His psychiatrist tried to help him understand, but even during the session, he couldn't grasp the concept. The only time he acknowledged was when the sample box of Aricept was on the counter and he asked what it was. I explained it was the meds his dr. had give us. Maybe he'd like to read it. When he opened the pamphlet he asked "Do I have Alzheimers?" and I said yes and expected that would open up a discussion. That was it. Beyond that, he could only ever acknowledge that he had a memory problem. I've since left books and other material around the house, but because I always want to know if he's checking them out, I lay them in a way that I know if they've been touched. Never. I tell you this because it pretty much sets the tone for our lives these days. DH has never acknowledged the dx and what it implies. We have never cried together about it. I've tried over the past 4 years, but nothing. DH has always had trouble showing emotions - told a frustrated secretary who wasn't getting enough positive feedback one time that he told me he loved me once and that if he changed his mind, he'd let me know.... Over the years, I convinced myself in a million ways that he demonstrated his love for me. I worked hard to help our kids try to see it that way as well. But now there's nothing. Emotions are long gone. No confiding of fears, hopes and God knows, there aren't any dreams anymore.
dear frand ... All you have ever done is speak of the love you have for your dear husband. And frand, we never know what is going on inside a brain or inside a soul... Your love for your husband made his life easier, just as it will make this journey easier for him. You both will be in my thoughts and prayers
Liz-when my husband was first officially diagnosed the psychiatrist felt Bill was clueless. I also left information about stopping driving, medications and books all over the house where he could see them-nada.
My husband doesn't have a clue. He was there when the diagnosis was spoken, but there were no questions about what it meant. I'm pretty sure he knows nothing, but I could be wrong.
When I first started reading about memory loss and care giving, I thought it was about someone else. I read the material intellectually and my thoughts were that it sounded so difficult, I could not imagine doing it. When I gradually became a caregiver, I cannot say. It crept up on me. When my DH kept making mistakes doing our taxes, I took them over. When the yard work and house maintenance became too much, I sold our home and moved us to a townhouse. Now, I am thankful that there are no rages, yet. His memory and reasoning are very far gone. His car sits in the driveway, He drives to church, very slowly. I have told him that sometime he will stop driving, but have not pushed it. I do 99% of all driving. He has a GPS, but probably would never use it. I am with him all the time. Sometimes, I go to the library or the dentist alone, otherwise he goes with me. That is hard. Right now he want to know who I am writing to. He likes to be in the room with me. I guess I am a caregiver, but I didn't plan on it. Maryd
Join the group!It was always someone else that would have THAT problem. I am meeting with a long term friend whose husband has been in a NH for over five years..hasn't known her for longer than that. She is having major $$ problems..his kids flipped when she finally had to place him..why wasn't she keeping him at home? (No one volunteered to help, of course). She did it with zero help from any support group..just blundered thru (her words). Fortunately her kids are terrific and help keep her sane. I'm hoping to gain some of her strength.
Your words hit a chord with me. My husband also says, "I'll try harder." I keep telling him it's not his fault, but he still says he'll try harder to do better. He is still at the point where, if he remembers, and really expends a tremendous amount of effort, he can control his temper. But sometimes, AD takes hold too strongly, and he can't. That is when, I am the one, as we all are the ones, who have to "try harder". Try harder to understand, to not lose patience, to not take it personally, It's a tough job.
My DH (Mac) has read the leaflets I picked up at the Alz. Assoc. office as well as the things that came with the Aricept. He will still read them every now and then but seems to think not everyone will get that bad and he will be one of the ones that won't. I hope his clairvoyance is on the mark for that one!!!
My doctor put me on 150mg of Wellbutrin a few years ago to help me with the stress of being a 24/7 caregiver of my husband and also to help me with my fibromyalgia.
As Claude is getting worse, the stress and exhaustion is getting worse so last Wednesday, he upped the dosage to 150 mg twice a day. I can already feel a difference and I have more energy and am thinking more clearly.
Our love ones are getting all the meds they need to help them, but us caregivers are often overlooked. We may need some meds to help us get thru this horrible disease.
I read an article by a physician that I'm almost certain was on the Alz.org site that said not to push clarifying about having AD. Answer questions that may be asked, but don't force someone to know all the details. The reasoning was that while he/she may not remember the actual conversation later on, hearing the word alzheimers or some of the other words used, could trigger the same panic reactions over and over again every time. Since DH never asked, I never pushed beyond leaving things around or having the tv on nearby when there was a special about the disease. Oblivious. At least Sid is aware and can respond emotionally to Joan. Days may not be smooth, but I can only imagine that somehow this feels like a battle that they are fighting together. DH doesn't participate and apparently I'm the only one who notices the pink elephant in the room. The psychiatrist said he was the most emotionally constipated man he'd ever met! I often think that I'm leading him into a long dark tunnel with the knowledge that eventually, I'll be the only one who walks out at the other end. (And, from what I'm hearing about the stress for CGs, that's not even a certainty.
My husband doesn't talk about his situation often but he knows he has memory problems and Parkenism. He knows Ali and Billy Graham do also. He told me a year ago he figured he had 2 more years. I have no idea how he arrived at that. When I was chiding him about something the other day, he said, "you know I have an illness".
He has been very good about not having temper or aggravation. No matter what I do or don't do, it is like it doesn't matter. This is the reverse of how he was before the AD. When he does something, like knock a glass of water to the floor, accidently, he just sits there like a toddler and looks at the mess with no remorse or, "I'm sorry". It is like he has distanced himself from painful or embarrasing situations. My Mother did the same "no remorse" about spilling something on the floor, overflowing the sink, etc. lmohr
I must say, I almost find the AZ easier than the physical stuff which has gone on for all of our marriage but which seems to be getting worse. The problems getting his clothes on and off, the moaning about his arthritis, etc etc. The MOANING all the time, and it's not really that he's hurting very much bec. if he has something to distract him he forgets about it. But because of the AZ mostly he doesn't get distracted.
Hello one and all, For what it’s worth I thought I would throw my two cents in on not being cut out to be a caregiver. My first question is – are any of us cut out to be a caregiver? None of us asked for this role we play. Given a choice I doubt anyone of us would have volunteered. We do what we have to do. We do it because we love out spouses – and realize if the tables were turned they would do the same thing for us.
I have been a caregiver for the past 8 years – 24/7. No help from family or friends. I never asked for help – I just did the best job I could do. My husband is now in a NH and will never be able to return home. I do not regret one minute of the years I cared for him. If I knew then what I know now I would certainly have reached out for help – I didn’t realize the resources that are available for the asking.
When I read Carloyn’s words – they hit home. None of our spouses want to be where they are. They did not ask for this life. I read, time after time, about the same question being asked over and over again. I would give anything to hear my husband ask me any question – his ability of communicate is now nearly gone – oh how I miss our conversations. He was wonderful to talk to. Every day I lose a little bit more of this wonderful man. From him I have learned patience. Pateince to take one day at a time and do the best I can.
I think we are better able to deal with the recovery from an illness like pneumonia or surgery because we know there is a tomorrow. With AD the only thing they have is now. No yesterday, no tomorrow, only now. There is no end – no recovery. Mo matter how much we ask, we pray, we beg – there is nothing we can do to bring them back – and all too soon they will be gone. Then what?
My husband can no longer hug me – he was a wonderful hugger, and I enjoyed every moment. He hugged everyone. Today I wish he could hug me – he is losing the use of his hands and arms. He can still kiss me – and kiss me he does whenever he is close to me. He tries to tell me things but cannot formulate the words. He will say something like ‘smell nice’. He is telling me he likes my smell. His ability to speak is almost gone, but he can still smell. Today he tried to repeat everything I said while I was feeding him lunch. He still laughs a lot and frequently smiles his wonderful smile that keeps me going. If I get two words together and a smile – it is a good day.
In yesterday’s newspaper there was news of the NH where he resides being closed because of reduced funding from the state. Now what? I would bring him home in a heartbeat if I could. This is not possible. I would spend our last dollar to build ramps and equip our home. This is not the answer. He is now a semi-invalid that has to have everything done for him. He has to be fed, shaved, bathed, changed, lifted in and out of his wheel chair and bed; he cannot sleep in a normal bed, he cannot even scratch his own nose or sit up alone. All the little things we take for granted on a daily basis are impossible for him to do. Think how frustrating this is for him – and all he asks is for understanding and a little patience.
Yes, I have walked this path alone – gone through the emotional rollercoaster that is AD, through the temper tantrums, the anger, the rage, even to the point where I had to be removed from our home for my own safety when he entered into what they called the psychotic phase of the disease. Yet today and every day I go to the NH to feed him lunch and do little things he enjoys – jus to be with him because I know one day he will no longer be with me. Some days I pray that he will just go to sleep because he has no life as it is today. Again I ask, was I cut out to be a caregiver? The answer is no, I am just a wife who loves her husband. If I have offended anyone, I am ever so sorry. It is not my intent to harm anyone or to cause anyone pain. We are all in this together – thanks to Joan we have this wonderful place to come and express our true feelings. What good is going to come from my husband’s situation – I have no idea. Something that will enrich many lives in one way or another.
May God bless you all and put a smile on your face and a spring in your step. Enjoy what you have because one day it will be gone -never regret anything you do out of love – if the situation were to be reversed our spouses would do the same things for us that we do daily for them. Ruth
Dazed, I'd love to have the man who was living with me 6 months ago back. The one who could still drive from here to our daughter's house in New York City. The one who put up the Christmas tree last December and took it down too. But I'm not going to get him back. Instead I've got this other person who can't do those things but who can still do some other things that I am going to miss 6 months from now.
Right now you would love to have the man back who did [fill in the blank] and who can't do that anymore.
We have a lot in common with Ruth even though we are at different stages in caregiving.