Yes, Joan, I totally agree with you - I try to "pick my battles" too. He will eat most anything I fix, but if he wants two servings of ice cream, that's okay. If he wants to sit and play computer games all afternoon - that's okay too. Gives me a chance to do some things around the house. I don't have the rages, thank goodness, but things can still get into a stressful situation - if I DON'T pick my battles.
Yes, Joan, I also agree. If we pick at everything we don't like we just would make things worse. My dh sleeps most of the time and I was trying to keep him awake. It didn't work so I just let him sleep. He also can live on sweets. I try and give him a choice so he does do pretty good and he is not overweight or diabetic.
I agree too. I spent too much time trying to stop him from sleeping. Now if he wants to sleep I let him. I can get stuff done and I am at peace when he is asleep. I am pretty sure that I will have the driving issue to deal with and that will take all the energy that I can muster.
Things are calm for now (remember - one day at a time), but it is always THERE. He gets angry every time he gets in the car with me, but thanks to the medication, is keeping it under control. I have no energy left to battle about anything else. Unless it's going to cause immediate harm to him, he can do what he wants.
Here's another agree! You just can't argue about everything. The one bone of contention lastely is bathing and shaving. and what I've decided is that as long as he's presentable once in a while, when we have plans for instance, then ok. We will be going to my grandso's string concert tomorrow, and I started already Monday telling him he would have to shower and shave. He still hasn't but I'm hopeing tomorrow he will. Usually when the occasion is coming, he will finally shower. I've tried making sure it's once a week, but he gets angry about so many things, I don't need to have him angry at that. Unfortunately, I sometimes have a BIG mouth, and before I get to think of what I'm saying, I'll say something like "What did you do with....." Wrong move. Stop and think before you open your mouth Chris.
Same with me, Chris. Or I'll say, " don't you remember...." Wrong. The funniest one is, I'll say "do you know where the....is?" Of course, he doesn't. Then I find it and realize it was ME who put it there! I always do tell him and he gets a big laugh out of it. Tells me to take his medications! (It's called caregiver's stress! Grin)
One of DW's not-so-great traits was stubbornness (we called it hardheadedness). "A woman convinced against her will is of the same opinion still". But now it is worse, so I just go along. No battles here....she automatically wins. When she said one night that her folks were out front waiting to pick her up, I wheeled her to the front door, opened it and the storm door to the cold night air, and wheeled her partially out to see if she could see anyone out there. But rather than admit to that, she just said to close the door - it's cold. (she is more understandable when she gets mad or upset). Usually there is just incoherent mumbling. So I wheeled her back to go to bed, but she resisted all the way. I think that one was a draw.
My husband wanted to go out in a big tee shirt that is mine that got into his clothes by accident and his plaid cotton lounging pants. We went to dinner and to the grocery store with him dressed that way. We live in Florida, so I guess anything goes. The tee shirt had decoration around the collar. I told his doctor that he was wearing my clothes now. What next. I used to try to get him to dress better and wear the beautiful clothes he has that he is saving - for something, but it is not worth it. I am not embarrassed anymore.
dagma3, my husband will put on his old painting pants (won't let me get rid of them) sometimes when we are going out. I used to try to make him change. Now, like you, I just let him wear whatever makes him happy. I do lay out clothes most of the time (if we are going out) - and sometimes he'll wear them but other times he won't. But not worth it to get upset about it. I don't live in FL (in KY), but it doesn't matter to me. Pick your battles is right.
I can fully understand where Joan is coming from. I let my husband go out on his long walks for a bunch of reasons, but one of them is that I decided to pick my battles. Driving was a battle I needed to fight. If showers get to be a real problem, less than twice a week, I'll fight that one too when it comes up. But the only person he can hurt with a long walk is himself if he doesn't come back. It won't kill anyone else. So I let him go.
My counselor told me to write down three 'gratitudes' daily to help keep me focused on the positive. So I try not to feel 'weird' when my gratitudes are such things as: I don't have the 'driving battle.' or 'He can still do most of the yard work.' Only you guys can understand this kind of 'gratitude', as opposed to ones from BEFORE...like taking a trip, getting a raise, etc. Sorry many of you can't say the same for 'driving battle.'
This might fit here ... Yesterday DW had her annual physical. She did not know what it was about, can't remember ever having had one, could not answer any of the questions the nurse asked ... meds taken, birthdate, her age, etc. Did not know why she had to get undressed or how to put on that paper gown. Her PCP was obviously frustrated by DW's inability answer questions or follow verbal instructions. She's a very caring doctor but I suspect she does not deal with many AD patients. DW was scheduled to have her annual mammography following the physical. She of course does not remember having had one, what it's about or why it's necessary. She insisted she did not want to go, she just wanted to go out to eat and go home. I think she would have gone if I had insisted but I thought she'd had enough frustration for one day and decided we would skip it for this year. DW was diagnosed 15 years ago with Barrett's Esophagus and takes Omeprazole (Prilosec) daily. She has not complained of any symptoms but PCP wants her to get another endoscopy ... also wants her to get a bone density scan next year.
How do you decide when all these preventive procedures are not worth the frustration? Anyone else been down this road?
Danielp, I quit taking DW for mammograms a few years ago because trying to do that in a wheelchair is impossible. She could not stand in front of the machine at all. She has been taking Prilosec for acid reflux for years, but never had to have any tests. I am sure she would not let anyone take her bra off, either, so another reason for no mammogram. She won't even take it off to go to bed...I guess because of thinking I am not her husband, yet she wants me to sleep with her in the hosp. bed at home. Cozy but not the most comfortable thing to do. I never get but about 5-6 hrs sleep. Would sure like to get 8 or 9.
TexasJoe, I know for a fact they can lower the machines to accomodate wheelchair bound women. That's not to say anything about YOUR decision not to bother. Again, pick your battles. There are many vital young wheelchair bound women, due to motor vehicle accidents, (whatever) however, who do (and should) have regular mammograms. Being a Susan B Komen Breast Cancer walker/fighter!, I encourage everyone to keep their mammograms up to date. (Reminder to self: Call doctor on Monday)
Danielp - - with AD what can breast cancer do to her that AD has not? AD is terminal so cancer would not add anything more to her illness. If something showed up, would you subject her to chemo or radiation or even surgery? I don't think so, so not much would be gained by having a mammogram. I agree, getting her to stand/sit still for one would be hard. I can just see as they sqwish her breast to take the picture, she panics and pulls away. Then look at the pain she would be in and the trauma. No, i don't see any benefit in having it.
As for the endoscopy - that requires anesthesia doesn't it? I know when my husband had it done, he was. There are many stories on here about how they decline faster after anesthesia. Again, unless there are indications there might be ulcers, I would not do it. Bone density is one of the easier test and she might not fight it.
Nancy - I am out of date on my mammograms - no insurance so would be unable to do anything if they did find something. My sister who had breast cancer bugs me occasionally about it, but she has found it does not good. Besides, because of PCOS and never been pregnant nor breast fed, I am at such a hiring chance of getting the female cancers, I figure why bother. I wouldn't do anything if found except maybe surgery (if I had insurance). No chemo or radiation.
Thanks for the info, Nancy, but I seriously doubt she would let anyone do the test at this point, and even if they tried, she would probably resist the torture machine and push away or something. We'll just deal with whatever comes along after whatever symptoms show up. Same with colonoscopy - can't envision her going through that prep business (she would refuse to drink any of that crap), so what happens in later years happens.
Joe, I agree with you....when my husband's doctor once suggested that he needed a colonoscopy I just looked at him and said..."I can't get him to shower, sleep in a bed, change clothes, or cooperate in anything and you want me to have him drink gallons of foul tasting liquid, be up all night looking for a toilet and then tell him to lie on a gurney with his butt in the air so the doctor can stick a "pipe" up his rear..." Yep, that would work..... The doctor started laughing and told me that if he ever made such a suggestion again I could slap him upside his head.
I had already figured out that if he did get some horrible disease maybe he wouldn't have to die from Alzheimer's. For us it didn't work that way and he had to suffer the whole indignity of end stage AD.....
My dw has had two lumpectomies, and has undergone radiation for the breast cancer. She was also allergic to the tamoxifen, so she could not take the medication. At this point, there will be no further treatments or mammograms, since we feel that it would be pointless. With the severity of her ad, breast cancer would be a welcomed relief, and a less painful way to die. I may seem heartless, but with all the consequences of the radiation, I feel it is in her best interest to forget about the cancer, and keep her as comfortable as possible. There are other symptoms showing up, such as difficulty swallowing, and a constant burning in her stomach, and this is causing me concerns, but we are becoming a bit hardened to seeking additional treatments or medications. She also has trigger asthma, and allergies, and when you see the total picture, there really is not much that can be done, except to try to maintain the "status quo", and hope she does not linger on in this condition forever.
i agree that we will not do anymore preventative treatments like colonoscopy or invasive procedures. i agree with Sandi, it would be subjecting them to hardships and agony to no avail. i would hope to be able to subdue any underlying condition for any consequential pain and move into hospice if it was warranted. divvi
DH fell the other evening on our way to grandson's concert. He was albe to get up and walk to the concert but by the time we got home he was in agony. OK, yesterday was spent at teh emergency room and it was found that he had fractured his pelvis. they wanted to keep him, He gets panicky if he doesn't see me, what would they do if they kept him that I can't do at home. nothing. It has to heal itself. so we are home. he has no memory of day spent at the hospital, and only knows he hurt himself. he's sleeping in the guest room, where the bed is better for him under the circumstances. He's taking pain killers, so will mostly sleep anyway. The big arguement now is how to use the walker, but you know what. let him do it whichever way he can manage. If he leads with the wrong foot, he'll realize it soon enough because he won't be able to go forward, and he'll have pain. When we first got home, I kept correcting him, Then I told myself, let him be. whichever way he can do it is fine.
Thanks everyone. I really appreciate the support we get here from people who understand our situation. I think I'll have a talk with wife's physician about this. I'm not ready to throw in the towel but I just want the time we have left together to be as stress free as possible, for both of us. PCP may decide that she no longer wants to treat DW if we're not going to follow her directions and if that's the case I'll understand. Maybe we can find a physician who specialized in geriatrics who will understand where we're at.
Chris, I am so sorry to hear about the fall...I hope he heals quickly and without much difficulty. Boy, it is always something, isn't it? Take care of yourself......
My DH, Dx'd in Fall 2006, was already getting into stage 5. 6 months later I started making decisions about treatments and tests. His file has a DNR on it. Bloodwork to monitor is still okay, because the Dr. knows I'm doing my best to have it done at the same time of day each time, because DH will not/cannot comply with the fasting requirement reliably. We will seek treatment for illness (UTI) or injury (cut fingers) but we will not be doing sleep studies; colonoscopies; etc. Unless there is an event we are not doing CTs and MRIs. He is 66 now, and moving into stage 6 more completely. I see no value in doing tests for conditions for which we would not be pursuing treatment. And unless there is a major change in his condition (BIG Stroke) there's no reason to subject him to tests like MRIs, when there's nothing new to look at. We change Psych Dr.s because of this. Both his new Psych Dr. and his PCP know and concur. They're great!
In case anyone misunderstood what I said..re: Mammograms,... I am an advocate for the Caregivers! to get them. My DH had an endoscopy 2 years ago, and the anesthesia was very mild...no after effects AT ALL...He woke up within 30 minutes at most. It's the anesthesia they give for surgeries that is so bad. Huge difference.
I would not even THINK about subjecting my DH to any treatments, invasive or otherwise, at this stage. The broken hip was not my call. One leg was suddenly inches shorter than the other one and his foot was pointed in the wrong direction. That's not going to heal itself.
Just paused to think. Not a soul thought of themselves when mentioning the mammogram, (exception being Phranque, Daniel and Joe.)..Isn't that typical for caregivers. HELLO!!! Oxygen first! So easy to say...so hard to remember!
Well, I must admit, I make sure I'm in good shape. but You know, it's interesting. If he wasn't suffering from AD I would probably have my knee replaced now, but I don't want to be disabled. In fact I can't be disabled at this time, so the knee will wait. But other wise, I make sure my health is good, Mammo's, bone scans etc do get done. You're right, we MUST think of ourselves, but in this case, we must also think of ourselves for the sake of our LO.
Exactly! I need to go have a full day work up/exam with Cardiologist and have put it off because of DH... it's been one thing after another. I will go, plus EVEN I didn't order my mammogram on my birthday (which is the date I remember the easiest). I used to do this without a second thought every year. I never have time for second thoughts now. I know, however, I must.
Like you, my left knee isn't working so well lately. I slipped on wet tile floor with my right foot and caught myself before I fell - resulting in my LEFT knee taking the twist! Just goes to show how quickly something like that wil happen.
I've done mammograms. My right knee had minor surgery almost 3 years ago before the diagnosis. It is possible my left knee needs treatment now. It won't be getting it. I'll pull out the cane if I need it instead.
There is no question that I'm making decisions that just might kill me first, because if it isn't major, it isn't happening.
My left knee, which I fell on several years ago, has been really giving me trouble lately (started when I tried bringing in a 30 lb. box of cat litter!). I went to the orthopedist and he showed me in the x-rays how much more space there is between the two leg bones on my right knee vs. the left, damaged one. It is not, however, quite "bone on bone". He is willing to give me synvisc - three shots a week apart - which is supposed to help. We'll see. I,too, am not willing to have a knee replacement at this point.
Yesterday in NYC I walked a lot, well over a mile, and the knee was pretty awful, but today it doesn't seem to be worse. I did have on one of those elastic slip-on braces but it kept slipping out of place.
briegull, I hope the shots help you, at least in the short term. I have hears both pro and con but you have the caregiver situation to consider. Good Luck.
I used this on my dil today. My sister thinks she doesn't cut the food up small enough for my 1 year old grandson (she does), so she cuts it smaller. DIL was having a fit. I took her aside and told her to 'pick her battles'. Not everything is worth battling over. Told her I am learning this with Art and she will have to learn it too cause with children you have to choose which things to fight over them with and which to just let slide.
i just reread my comments on this thread, about keeping healthy. since then I have been suffering from Lyme disease, which at this point is just about done (I hope) Listen folks, Appreciate your health, and take really good care of yourselves. It can be gone in an instant. we tend not to think of ourselves (women and caretakers I mean) but we really have to. fact is, our LO can't manage with us sick. I was fortunate that my kids pitched in while I was ill, especially when I was hospitalized. Still, we really, really need to TAKE CARE OF OURSELVES.
Oh, Chris, Lyme can really throw you. Be sure you keep on the meds for a long long time. We had a spate of it on Monhegan (but then the deer were all killed and it's been okay since then although I still miss them)
What I hate is if I say something hurts (like my damleg) he immediately sympathizes and says he knows, his little toe hurts too (or whatever).