I invite you to log onto the home page - www.thealzheimerspouse.com - and read my new blog. The strangeness of this disease continues to confound me. Please read the blog and let me know if you experience the same type of repetition. It is so weird that it is humorous. Or I'm just desperate for some comic relief in my life.
Joan- I ask myself the same thing all the time! I think this is such a strange disease. Bob and "Al" do the same thing to me. I wonder if they are so limited in the thought category that if they can even think it once it is stuck their. So the response would be the same. Just craziness..that is all there is to it!
Yes I have noticed some things like that too. He always remembers to drink a glass of water each morning before he has coffee, never forgets. Then, he makes it a habit to always have a used napkin to throw in the trash after each meal, never misses a chance to say, "excuse me" as I am washing dishes, and to throw it away.
Weird. Yeah that is strange Joan. funny?? well...it made me giggle when you said how his buddies reminded him without being sarcastic.
Truly how I would like to get in his brain for 10 minutes, and then GET OUT. Just to know.
Ah yes -- repetition! Maddening, isn't it! My DH also asks the same questions, in the same tone, many times throughout the day. I have to admit that sometimes we (our kids and I) end up laughing because it is so absurd. I often wonder if it gives our loved ones comfort to repeat the same action or words. The familiarity must be like an anchor in a world that is very confusing.
Same can be said for Clare ... over and over it's the same questions with the same wording. It's like watching the movies Groundhog Day or Fifty First Dates over and over. On my good days when my patience seems abundant and I provide the same answer each time to those same questions, it does provide some comic relief. Of course, on those days when my patience is running thin ... well, I won't go there!
this is the teaching of the word 'patience' in the ultimate levels. those repetitive exact worded questions are enough to send anyone over the edge. joan you can be lucky its only 3 times a day. ha! mine was 3/times/hour. but like everything else AD you do develop a survival tolerance that sort of tunes it out at some point, you answer a few times nicely and then it was a 'uh-huh' or maybe or anything else to appease.
Joan- It is rumored that Einstein once said that stupidity is doing the same thing over and over and expecting different results.
The key to coping with this disease is acceptance and kindness. We all have been subjected to many of the effects of this disease, and cannot understand many of the strange things that occur. It is indeed frustrating, maddening, confusing, and we cannot understand why this happens. The reality is that their brain is being ravaged, and depending on the areas affected, that portion of the brain becomes non functional. Try putting yourself in their place.... What part of the brain controls emotion? Which part controls body functions? Which part controls thoughts? or reasoning? or memory? or incontinence? or behavior? or motion? Mobility? Judgement? We all wonder how our spouses can be so different, how there are so many manifestations of bizarre annoying symptoms, and yet because the brain is so complex, it is puzzling and frustrating to have to deal with what is happening. Well this is the very nature of the disease. It marches on, destroying brain cells, and as the damage progress, it will affect certain behaviors and certain functions. Sadly, it breaks our heart, but also gets us very pissed off. It is almost intolerable. But imagine how the person must feel...trying to unravel the confusion, trying to function, trying to do the best they can. I have failed my dw because I did not totally accept the disease, became frustrating with doing the same thing...being sarcastic when I was annoyed, and not being patient, kind, understanding, loving, and supportive. I now see the disease much more clearly, and understand why things were as they were.....It was not her fault, she did none of it intentionally, and I am positive that she did not like it very much either. The person she was was eroding in front of my eyes, and I hated it because I was losing the one thing I loved the most. But, I often was annoyed but unfortunately, did not give much thought about her feelings, her way of dealing with the disease, or her way of coping to what was happening to her, nor the random thoughts that she was having. Her death unfortunately brought me to the understanding of this horrible disease, and I wish I had been more understanding, more loving, more patient, etc... I once had a car that for no reason would stall at every 3rd stoplight. It would refuse to start until I pounded on the steering wheel, yanked open the hood, looked at it, slammed the hood, the door, then cursed. That would fix the problem until the next time....and I repeated this same frustrating behavior over and over. Mechanics diagnosed, probed, replaced, billed, wondered, but were never able to explain why. This went on for years until it finally stopped and would not ever start up again. My antics and frustrations never did solve the problem, and looking back, I doubt if this actually made the car start. I could have saved myself a lot of frustration if I had said "Oh well...........
Pharanque* I take issue with your comment that you " failed your DW because you did not accept the disease, became sarcastic, frustrated, etc..."
We all know how much you loved your DW and how much you cared for her with dedication and love.. You did not fail her and we do not fail our LOs when we become frustrated, sarcastic etc...WE are exhausted as were you and can only take so much before our "fun meters" are pegged. We are human and our reactions are human nature. We are not yet saints in heaven you know..we are imperfect earthlings...So please go easy on yourself in that regard. With the rest of your comments I totally agree....I guess this is the reason for " if you have met one ALZ patient you have met one ALZ patient" While there are similarities in all of them they all also have their own individual identity and so what one does at one point another may not do at all...
I have the same question day in and day out several times a day " Do I have to do anything today or go anywhere?" and no matter what the answer is, it is always the same repeated question..
Drugs...no drugs.... is it the drugs making them worse...or....??
There was a thread here a few days ago linking to an article on taking AD patients off all drugs and letting the process take it's course, that it is better for the patient.
I believe it was marty that brought up something about how would WE handle it then? (something like that)
I had taken him off Aricept for a week awhile back, and the agitation got SO bad it was almost an emergency. That was a couple of months ago, and consequently not only did we get him back on the Aricept but added the Seroquel too. Otherwise we would not be able to take it, he could not sit still for 10 seconds.
THAT is the type of repetition we get here, UP AND DOWN UP AND DOWN< picking at little spots on the floor.
I feel very lucky that he does not talk much, though, I miss him TERRIBLY. He is moving on to his own world, where I cannot go, don't want to, and feel SO BAD for him.
oh *phranque, you did not fail your dear wife. It pains me that these thoughts are even floating around in your head. I hope deep down you do truly know that you were an amazing care-GIVER and that you did the best you could in an impossible situation. That is all any of us can do, the best we can at any given moment.
Try to remember the times you were running yourself ragged trying to take care of ALL the people you were giving care to. Try to remember the movies you played over and over, the songs you sang, the jokes you cracked; all just to see her smile.
Try to remember the gentle loving care you gave when your dear Audrey needed you the most. You did not fail her Frank. Please, do not fail yourself now. You have helped me more than you can begin to imagine. You are loved ((hugs))
I have come to believe how we handle and cope with this is all a matter of where one is in the disease. In the earlier stages the repetitive questions and actions use to drive me nuts. I remember one way I coped with this damn disease is when I felt like I was going to completely snap, I would grab a stack of old plates, head for the wood and throw them up against the trees smashing them to bits while I screamed like a mad woman. The first time I did it , it was so cathartic that I went to yard sales to buy cheap plates just so I could smash them. Might seem crazy to some, but it was a release I needed and it worked for me.
When your loved one is late stage, your whole perspective changes. Or perhaps that is unique to me? Lynn was so lost to me for awhile there, unable to communicate at all, barely a yes or no or nod. Unable to even make eye contact. That was our life for over a year, it was the worst time of my life. I truly did not think I could survive through the pain. Just breathing literally hurt.
Then with the Marinol the miracles began and Lynn is now talking up a storm!! He will repeat the same thing many many times during a visit. But I swear to you it does not bother me one iota! In fact I am just as happy to answer his question the 20th time as I was to answer it the first time. I am grateful and so damn thankful that he can talk at ALL!!!
Perspective and attitude….
Sadly it takes hitting rock bottom to reach these epiphanies.
I like you Phranque went through a lot of the same feelings as you did. But after she passed I began to realize because of our connection to each other over the years it was a normal grieving process even though she was still alive. We began to grieve together when she started to decline. By the time we knew that the end was near we had grieved pretty much to finality. After she passed I did grieve alone but it was mostly connected to the final loss of her being beside me and not about the illness and the care she received from me while alive. I know that there were many times during the caregiving that I was not able to do or be the person she needed but I also knew that being human I probably could never have been everything that she needed. We can only do what we can do and nothing more. To think or even consider that we done less than that is mostly just remorse and is fruitless. What we need to accept is that it was always totally out of our control and we could only try to accept that as a truth. That in itself is where the real problem is. Until we accept that we were never in control is the real truth and when we accept that fact we can move forward into the new day without remorse. May God bless and strengthen all of the caregivers. Bruce D *
nikki i totally agree, perspective and hitting rock bottom gives a whole new gratefulness for what they can and cant do. i am just happy to have him alive and smiling at me. anything more is icing on the cake.. divvi
Phranque, Your post is so much what I have always told people. Put yourself in their place. I always did that and still would get frustrated but we are all human. I think if anyone going through this journey with their loved one would just stop and put their self in the loved ones place, imagine it were you with the disease and how you would hoped to be treated, we would all be more understanding.
Phranque, as you have said, we will never understand the way the brain works. You honored your wife more than anyone I know as I remember the humor posts you made, what a horrible man I thought you were, and than as I followed your posts more soon saw the humor took the place of posts about how upset you were.
As your wife was in the last months of her life the special person you are came out. You have nothing to feel guilty of
Bruce D* sometimes he says he's had enough, and asks the lord to take him....and sometime he says he wants to go back to where we lived 30+ years ago...I just try to change the subject now..
Sadly last night, he asked me where had Julia (me) gone..she was right there in there in the chair....then he will stare at me as if to say"who are you"...now this breaks my heart more than anything.
Nikki, What you said has a lot of truth to it. It's a matter of perspective.
Someone once wrote in to Dear Abby to complain about how awful her husband snored, how she never got a peaceful night's sleep, how it was driving them apart. A few weeks later, someone else writes in to Dear Abby lamenting that her husband had died, and what she wouldn't do to have him back, snoring beside her -- thus, chastising the first writer.
A friend of mine, a single mom living paycheck to paycheck, discovered her roof was leaking. She got very depressed about the expense she was facing, when she had so much on her plate and felt overwhelmed. Someone then said to her, "Well, be glad you have a house!"
In both cases you have people expressing themselves about a reality in their lives -- a husband's snoring, a leaking roof that needs to be replaced. And then along comes someone who diminishes their feelings by telling them it could be worse.
Of course things can be worse! There is almost always someone worse off than you. But does that make your feelings any less valid? NO! Because those are YOUR feelings in relation to YOUR situation.
For those with spouses going through early stages of AD - that is their reality, and they are overwhelmed. They have every right to vent, to talk about how awful it is. They don't need to be chastised, to have their feelings diminished by someone who is dealing with later stages of the disease! Their feelings are valid. Yes, down the road it will be worse, but that doesn't mean it isn't bad now.
From the perspective of someone down the road ... yes, the early stages may have been "a piece of cake" compared to what the person is dealing with now. But no one should look at those in the early stages and tell them to be grateful!
I have friends who are afraid to complain about their husbands - because they know my husband is in a wheelchair and suffering physically and mentally because of MS. They've said to me they don't feel they have anything to complain about in comparison to me! I assure then that whatever it is that their husbands are doing to annoy them - that is a valid complaint, it's their reality, and they have a right to express their emotions. My situation should have no bearing on theirs. My reality is not theirs.
msmagic- those are the words I had told to me when I went to counseling and I passed on to women I counseled. It is our story, our reality at the time. My husband is in the early stages and I know it will get bad. But, as you said, right now it is bad compared to the past. We also have to remember to meet people where they are at the moment, not preach wait until later.
Phranque*, on one thread you mentioned getting on your knees in a restaurant to help your wife eat (or you'd be willing to do that, I don't remember which now). The thought of that compassionate, unselfish act has stayed with me. I sometimes thought of it as I was helping my hb eat. As we live in the dementia life, we do what needs to be done at the time. Times change, actions change. Realities are different for different folks, but if we weren't "caring" people, we wouldn't be on this site encouraging one another in one way or another.
Joan. Ypu want comic relief. picture me trying to pluck my DW's chin hairs. Me with one eye nearly blind, no depth perception, using a tweezers I'd swear was defective. I couldn't get a one. im reaching for my razor shen out cleaning lady who comes in for a few hours on Friday came to my rescue. I took over loading th dishwasher and as soon as I turned on the garbage disposal a flood came out from under the sink. The. building drain stack was clogged and the disposal pressure blew apart the PVC connection. the cleaning lady and i are mopping up Ishen i start to sweatbullets....a check the AC and it's 78 degrees. Call the service company they arrive within an hour. I'm thinking all will be well, Wrong! Compressor blown, they'll order one on Monday, If I'm lucky AC will be repaired Wed. or Thursday, Kitchen Sink Monday. DW rarely talk, but thought I'd wet my pants when she said I have good news, a full sentence? I'm not pregnant!!! Where did that come from???
ms.magic, if you think I was chastising anyone, than you do not know me at all! I was offering MY point of view, My perspective, which is just as valid as anyone else’s. I did NOT tell anyone to be grateful…. I said I am grateful that Lynn can talk at all, and I am!!! I was not downplaying the earlier stages, clearly I do know how frustrating it is or I wouldn’t have been out throwing plates at trees while screaming like a mad woman. Every stage has its own challenges. I don’t think anyone here has ever said they have it worse than others. I know I certainly haven’t. But this is exactly why I question if I still belong on this forum…. I can’t voice our experience in late stage without upsetting those in different stages?
(((((Nikki))))) sensitive sweet and beautiful. I would be broken hearted not to see you here, many of us would. Facebook is just not my thing...I look for your insight every time I come here. Everyone loves you.
((Coco)) yes perhaps I am sensitive <sheepish smile> Not for the first time of late I see how people twist others words, I don't much like it. We are ALL here to share our personal experiences and to try to help other people. Our own personal experiences are what makes us all unique and gives us the wisdom to pass on to others.
A person who has lost their spouse or who is in later stages should be able to express the heartache they feel, and to wistfully wish for "the good 'ol days" back without worry about offending someone in a different stage. All of our feelings are valid, we shouldn't be trying to make people feel badly for sharing their personal experience of feelings. Where is the empathy?
And with that I will try to practice what Thumper is famous for saying “If you can't say something nice, don't say nothin' at all.”
You know, that is one of the things that drives me the CRAZIEST about those nasty fair weather friends I always yak about.
Like ms. magic says, they tell you, Well others have it worse..
I WANT TO YELL AT THEM!!! Well DUHHHHHHH NO I NEVER KNEW THAT!!! I THOUGHT I WAS THE ONLY ONE IN THE WORLD HURTING!!!
I told her and her husband when they ask how Dado is, that I will not discuss it with them , as they don't really want to hear it. I heard them both gasp on the phone and for once I did not wimp out and told the truth. She called the other day and asked how he was, and I said fine lets not discuss it.
Good job Coco= you have to do what makes it best for you which may not always be the easiest things.
Nikki - I think the majority here will be where they wish they were back in the earlier stages - not to go through the process again, but just that the burden seemed so much less to them. I realize that right now is tough but later will be tougher.
Feelings are raw, patience are strained. I also think at times we all want to 'fix it' or make it better for each other. In so many ways we hope telling them it will get better is an attempt to help. It reminds me of the complaint often heard from women about their husband's: I just want to vent or share how I feel, and he wants to fix it.
Maybe we all need to read between the lines at times to see if it is venting, but even with venting it is hard to tell if the person really wants advice, encouragement, or whatever. So hard, so delicate, so sensitive of a subject.
Once again, I must remind everyone that the written word is without facial expressions and body language. AND how it is interpreted is also dependent upon the emotional stage AT THAT MOMENT IN TIME, of the person reading it.
As I read the comments by Nikki and Ms. Magic, I did not find anything chastising or offensive about either of them. Maybe because I know Nikki rather well at this point, I knew she was just expressing her perspective. I also thought that what Ms. Magic wrote was absolutely perfectly expressed - I wish I had written it. From each person's perspective, the reality they are dealing with is horrible and difficult for them at that time.
Well said, Charlotte - "Feelings are raw, patience are strained. I also think at times we all want to 'fix it' or make it better for each other. In so many ways we hope telling them it will get better is an attempt to help. It reminds me of the complaint often heard from women about their husband's: I just want to vent or share how I feel, and he wants to fix it. Maybe we all need to read between the lines at times to see if it is venting, but even with venting it is hard to tell if the person really wants advice, encouragement, or whatever. So hard, so delicate, so sensitive of a subject. "
Everyone needs to be allowed to express THEIR feelings in THEIR reality at the time they are feeling them.
"They don't need to be chastised, to have their feelings diminished by someone who is dealing with later stages of the disease! Their feelings are valid. Yes, down the road it will be worse, but that doesn't mean it isn't bad now."
"But no one should look at those in the early stages and tell them to be grateful!"
Where it was my name in the first sentence and where I am the one who said I was feeling gratitude, I could not help but take that as a personal attack. My words were twisted and anyone who knows me at all knows I have always been a support here. I try to stay out of the conflicts as I have enough real life issues to deal with. But I do feel a need to defend myself, I was not chastising anyone nor did I say people should be grateful.
We are all raw, and ALL of our feelings are valid.
Marty--fyi for the future--there are tweezers and there are tweezers. A good brand is called Tweezerman--easily available all over. Your post reminded me of all the new skills I've gained in taking care of Steve. The ALF only does a so-so job of shaving him, so I'm becoming a virtuoso electric shaver user. I even learned to use the sideburn trimmer and that it's good for doing his neck (he tends to tuck his head down--I guess that's a relflex to protect the jugular)? Anyway, this week one day I was touching the neck area up with the sideburn trimmer and he started laughing heartily. I said "what's going on--did I tickle you" and he laughed even harder, which started me going. Re the debate on early stage vs late--there's no way we would have had this giggle fest in the early stage. Late stage is much better, so far.
P. S. I have five electric shavers at home that were dropped by the ALF staff and all the little wheels came out. When they do that with number 6, I will be forced to sit down and put one back together. I hate doing stuff like that!!!!
There are these neat little shavers you can buy at the drug store, they take one AA battery.Great for trimming edges and for the stray hair.The one I have is called a Remington. Not good for eyebrow plucking, (or unibrow), but great for everything else. $12.
and...Joan, yeah, nicely put. That is truly what I feel, I just want to express myself, I KNOW it cannot be FIXED everytime.
That is what is so special about here, EVERY time I have been stressed and calling out, NO ONE has admonished me! Not like the "real" world that tells you "it could be worse"
nikki i have reread your post a couple of times, and find absolutely nothing in it that chastises. its very obvious you are referring to your own situation and past refererence to how you felt with your own spouse during the earlier years. there will always be someone who takes the words we write out of text and meanings and for me i think each will make up their own mind here what was the obvious meaning to our posts. we have said many times that each persons stress is just that their own - and each has his own validations for how they feel at a particular point. and its also valid to note that as we are under stress and that includes almost all of us, we do tend to wear our emotions on our sleeves and it makes it easy to feel sensitive. divvi
I'm new to this site, actually I have been reading it for a few months but haven't posted till now. Yes, we get a lot of repetition and I try to answer so I say the same thing in different words. ( Someone here suggested that a while back?) It doesn't make much difference, I get the same question a little while later. I am more fortunate than a lot of you. My 49 year old daughter lost her job in VA 2 years ago and she moved up here with us. She is still living with us and its great to have some to talk to and knows what is going on. Even though she works she comes home at night and we can talk.
No kidding on the "not making a difference." We either just have to keep repeating the answer to them, ignore them, or go crazy lol/
Some things we have to tell them over and over and over, like his leaving the door open or leaving the tap on, otherwise, it would not get remedied. I guess as they forget anyway, telling them over and over and over does not bother them, just us.
Ok off to turn off the tap, wipe the mess, check to see if he is going down the steps again...
I used your comment - initially - as a springboard! What struck me was your comment about perspective. That is what I focused on, but then went off to talk about other things. NONE of those were directed at you! I feel terrible that I have caused you to be upset.
I was not taking your words and twisting them at all. Please understand that!
I was just trying to illustrate perspective - that is all - and how overwhelmed we feel at whatever stage we are at.
Joan, thank you for understanding. There is not a malicious bone in my body.
Well now I feel like an ass :/ I did take it as a personal attack and I was more hurt than upset that I was so misunderstood.
Joan is so right it is very easy to take the written word wrong. She also said something I hadn’t given much thought to before, “AND how it is interpreted is also dependent upon the emotional stage AT THAT MOMENT IN TIME, of the person reading it.”
I would say there is a lot of merit to that statement. I wasn’t in my normal chipper mood when I read your post ms.magic, and I did not respond as I usually would to a “perceived attack” either. I too am sorry, sincerely. ♥ … now, let’s all hug :D ((ms.magic))
Marilyn--I have to do the shaving too! I think when I go away for a week of vacation in August, I will come back to whiskers that are beyond the capacity of Jeff's electric shaver.
Elaine,I drink a lot of coffee too. I buy the cheap stuff and add some expresso to it, makes good coffee.Beats Starbucks by a mile.(I can get expresso real cheap at Dents and Bents).Coco,I'd love to meet you,you're so interesting.
yhouniey, I add flavor to the cheap stuff & I get the sugar free flavor at the Dollar Tree store, so that is cheap too! Good thing I don't have gourmet taste buds! ( I actually don't care for Starbucks, I think it's too bitter - but maybe that's because I don't have gourmet taste buds!) I think we need to take a road trip to Hawaii to meet Coco.....well I guess it wouldn't actually be a road trip!!
I never really knew what good coffee was until I moved here. Starbucks tastes pretty bad compared to fresh harvested, dried, and roasted. It is my one vice I will not budget, I drink a few cheap beers and shop for bargains on food and clothes, but my coffee is too good to give up . And it does not give you a sore stomach either it is so good.
Any one coming here is welcome to contact me for information, and if you are on my island of course we will meet up. (Hawaii Island, land of volcanoes, coffee, mangos and coconut of course)
((ms.magic)) whew, glad that's over too <huge smile>
((Coco)) I don't drink hot coffee often but it would be a treat to share a cup with you!! And I will take that smooch on the head too <big smiles> Due to the health crap I am experiencing, this week one of my doctors put me on blood pressure meds - a diuretic... so it wouldn't take much to make me laugh til I peed my pants!! LOL
Frank, you are priceless ♥♥
((Divvi)) Thank you ♥♥
Marilyn and Emily, I shave Lynn too! If he goes just one day without a touch up it is really hard to give him a shave. I had trouble with the neck area so I tried a different kind of razor, Philips Norelco Bodygroom - no more wheels, parts to break or mess, I love it!
Nikki--thanks for the tip on the shaver--I will look for it. My Dad and Steve both used the least expensive Norelco model--that's why I have 6 of them--but all those parts are a pain.
On another note, please--no more Starbucks bashing! Starbucks is one of my vices :)
I just have to share this with you as a follow up to the blog. In the blog, I wrote that Sid would not stop talking about the little plastic piece that goes in the middle of the dominoes game. He kept it up while his Alzheimer buddies were there. This is a demonstration of what happens when Alzheimer guys get together. Today, one of the guys comes with a bag. Inside is the plastic piece that Sid was looking for. The guy had it at his house the whole time - he was trying to fix it. Apparently it never occurred to him during Sid's obsessive repetitions about what happened to it, to mention that he had it at his house. Ya gotta laugh.