I invite you to log onto the home page - www.thealzheimerspouse.com - and read the weekend blog. Usually when I have an experience or emotion related to AD, many people share them with me. I am wondering if my latest situation is unique to me or if others have experienced the same. Please post comments here.
Joan I don't think it's a matter of CG blindness as much as not wanting to accept the fact that our spouse is failing and that there is nothing we can do about it. What they could do yesterday is no indication of what they can do tomorrow. Repetition doesn't matter. Each new day is full of new experiences for our loves ones. Mourning or fighting their loss is pointless. It's almost easier for us to give up the fight and accept what is.
Joan, just read the blog. What went thru my mind is a child growing up, only we are in the reverse. You do everything for a child to begin with but gradually let them do more. But, some moms will do everything for them until one day the child yells 'I can do it myself'. In your case, and ours, we automatically take on doing more for them - some need it, some we find it easier to do than let them struggle. In your case, you were doing so much, in auto pilot, but the auto pilot got turned off and you realized just how much you were doing and how little he can do now.
Joan, I had to force myself to read your blog through to the end. It hit home too hard and made me start questioning those things I fear I am being blind to also. I follow your blogs and comments so closely because our spouses are very close in stage and symptoms. And I could see my DH in the boot episodes. Also the food. DH has been cooking a lot since his DX and I'm so used to his cooking that I think I've been blinded to his recent loss of abilities in that area.
My DH hasn't had the short term memory loss to the extent of Sid's at least until recently so I find myself kinda blinded in that area now. I've read how you and others will have to repeat things within seconds or that your spouses will do so, but that hasn't been a problem here until just recently as DH comes off this plateau. It came so suddenly that it was hard not to say I JUST TOLD YOU THAT! Okay, a couple times I did say that, but I try not to now as I'm understanding this is something new to get used to. Since DH also has severe hearing loss and has had for years starting in his late 50s I'm so used to his not hearing me that it's easy to allow myself to be blinded by his not hearing. So now I tell him three times and he can't hear and then a fourth time he hears and responds. And then a couple minutes later he asks again and thankfully seems to hear me the first time on the second round.
I think Caregiver Blindness is a good term for what I'm going through. It's not that I don't want to accept it, it truly is that I've gotten so used to how things are on this plateau, this reduced standard of life, that I'm caught off guard by these changes. I need to be more on the alert as they're coming fast and furious.
When I called Hospice for an evalaution it was to get some questions answered. After 2 1/2 hours of evaluation and answering detailed questions they enrolled him---I was shocked. I didn't expect it. I didn't think he was "that bad". And then I started reviewing all the questions and answers we'd covered. I knew he was solidly into Stage 6, at least toward the middle. I knew that--but having been dealing with his progression constantly, I wasn't comprehending what being there meant. The evaluation made me take a step back. In so doing I suddenly saw the forest we're wandering in, instead of all the trees we're lost among. With VaD, as he declines he loses bits of skills for differing spans of time before they finally leave for good. They come and go, until they finally go and don't comeback. I've been at this a long time and, I think, have improved in going with the flow of the changes, but still I catch myself trying to stay ahead of him, while he ricochets off on a tangent. I don't think we're blind to our LOs changing abilities, as much as we're blindsided by them because there's no rhyme or reason (pattern) to them, and no timetable.
BLINDSIDED is a good word for sure. In the beginning I was alert to all the small changes as I was still justifying his diagnosis to friends, family and myself. But lately some of these changes it's clear I've been blind to as I'm not sure how long he's lost a certain ability until I notice and then I feel blindsided.
joan i can relate to your happenings. My DW is doing the same thing. one day she can remember how to do something simple and the next time has forgotten how regardless of how much time has elapsed. She no longer can do a lot of the simple things that require any thought. Now she says she can't hear very good but it appears that there is nothing wrong with her hearing because she can hear faint sounds that even I have trouble hearing. I think it is mostly that her bran cannot process the vocal words being said to her and therefore it is more of not understanding what is being said rather than not hearing it. you just have to roll with the changes and accept themn as they come. fighting them does not do anything productive for you but just adds to the frustration of dealing with this disease. every day has new challenges and we as caregivers just have to adjust to the changes as they occur. one day at a time sweet Jesus.
Joan, haven't read the blog yet, but this reminds me of being here in the daily 'grind' and recently having the luxury of three whole days away while my daughter stayed with DH. She documented the doings of those days and left her notes in a file on my computer. She is not an alarmist but it was the first time she had actually spent 'enough' time to get a full dose of life here in the place I call 'OZ'. When I read her details of what I consider 'normal' ...I thought oh my goodness..this is much worse than I thought. It is worse than anything we've known..but I didn't realize it that way until I read her comments. I'm muddling along arguing with myself that 'its not really time to place him' what will everyone thinK..He looks ok. He can walk. He can still function fairly well..How can I do that to him? Then he escapes again on the lawn mower and gets on the busy farm road..comes back pleased that he's bought a coke etc. He meets no strangers..I am on guard every moment. Because overall, he is lost and can't find his own chair in this room where we've lived for over 30 years. Even those things aren't 'bad enough yet' I try to reason, UNTIL I read it from the experience of someone else.
I can surely relate to all of this. I fill hb's med tray weekly; he takes meds every a.m. and p.m. It still amazes me that he never remembers to take them on his own. (I'm the one w/the problem :) ) He'll go to bed w/o telling me that's where he's going, and I have to wake him (or wait an hour or two when he gets up, which he does every couple of hours). He looks "normal," walks, etc. I can understand Sid's not knowing how to put his boot on no matter how many times he's seen it done. Routine isn't remembered in our house anymore.
What you are describing Joan is just one more unique (rotten) trait of this disease. Most other ailments have indicators like coughing, sneezing, fever, bleeding, pain, etc. You can readily tell when the affected is getting worse. Not ALZ. You have to accept that they are getting a little bit worse every single day and wonder what will be the next lost function or indicator and do your best to educate yourself, anticipate and be prepared. I know, easier said than done. While my DW was still home and somewhat able to get along I was extremely frustrated at something that just did not make sense. She did EVERYTHING wrong and EVERYTHING opposite. She always: put her shoes on the wrong feet, ran the hot water to get a drink, put her dishes in the garbage instead of the dishwasher, put her pants and shirt on backwards, sat in the chair opposite of the one I pulled out for her and laid down in bed with her feet on the pillows. Always. I know she has ALZ and the reasoning button is broken. But wouldn't logic dictate that if you don't know what you are doing that you would get it right about half the time? Since my DW is one of the victims that has been very uncooperative and hard to manage I often thought that she did this on purpose to piss me off. I know that wasn't the case but it was extremely frustrating to watch.
Joan, I must confess that I have been "jealous" regarding how independent Sid seems to be. My DH is around the same stage, but I would never let him be home alone (or anywhere) without some sort of supervision. DH still can physically function well but (dresses himself, cleans up the table after meals, no incontinence, can play cards) but there's no way he would be able to remember how to do something like put on the boot, because it was not a routine before the disease. I am vigilant about watching for the subtle changes which may trigger a decline, but when they do happen a little piece of me goes with them. I understand why we as CG's have blindness - it's very painful to watch and admit the never ending loss.
In my experience they cannot learn new things. Regardless of how many times Sid watches you put the boot on, he's not going to learn anything from that. Around here I cannot rely on DH to get ready to go anywhere. I have to get up earlier so that I have time to get him ready and then get myself ready. I hate this disease.
What a great topic. I see this "blindness" in myself all the time. It's like if I can make myself see only the parts of life that DH can still manage, I don't have to look at all the rest of it, and where we are going. You'd think after years of doing this, I'd have a different outlook, but every time another ability goes, it's so very painful that I try not to notice. (like an ostrich sticking his head in the sand, I guess)
My biggest shock was seeing DH again after a week of respite in January. He didn't really decline while he was gone, but I finally saw what the changes were that I'd been living with for a long time. I felt like I took my husband to respite, and then brought home a stranger. It was awful, but I needed to see all those changes.
The scary part of this "blindness" is that people with dementia are often not kept safe, because their caregivers don't see them as they really are. It's too easy to think that they can still drive, or go out alone, or be left alone, when they are really past the point of doing those things safely. This is the part of not seeing that really scares me. I don't want to ever let my DH be harmed because I refused to see how things had changed. Thank you for the reminder that I do need to step back from this once in a while and re-evaluate if he is still safe and secure, or if the security level needs to be bumped up another notch or two.
Jan, I agree we don't even see some of the "dangers" because we're so used to being w/spouse. I quit my part-time job because it became apparent hb shouldn't be left alone. Daughter pointed some things out and said, "Would you leave a 5-yr old alone while you were gone 8 hrs or even 1 to go shopping"? Nope. A fire?--hb wouldn't know what to do; person at the door? HA They'd have fun trying to have a conversation. It is easy to think they can do things they can't maybe because we've been doing them. Yes, we do need to reconsider re-evaluate from time to time safety and security issues. Thanks Joan and all of you for reinforcing this.
I can relate to this as I was under the impression that the memory problems my DW exhibited several years ago were due to Post-Polio. My DW specialist spoke to us about this, but I could see how bad my DW memory was getting but I was blind due to the fact that she was so young that I never even dreamed it could be AD, and the consistent assumption that it was all due to Post-Polio Syndrome. Then came the note...... "Get an MRI, see a neurologist to rule out dementia". The scales fell from my eyes and I felt like an idiot! I was in shock, a deer in the headlights and the truck was seconds from running me over.
And it continued with, do I leave her alone or not?? Deep inside there was this feeling of terror that no, I can't leave her alone, but what I do?? Not only are we blind, but when it is EOAD, it rips your eyes out and stomps on them and you need to get new ones!
And then, you get those new eyes you are still stunned, and can barely make out the landscape, and when things come into focus, you can't believe what you see!
That day back in 2001, when I beat my DW at scrabble, I should have known something was wrong, very wrong. I never beat her, and we never played again.
Like LFL I have been envious of those of you who could leave your husbands to go out or to work. My DH would be so lost and get into so many problems it would be disastrous.....plus he would be looking all over for me. He is a 5/6 right now but when he has lost abilities to do things it has almost always been one day he could do something and the next he was totally oblivious. So, I would think you have not turned a blind eye as much as that he may have just taken another step down into the dx.
we had dh family from south carolina here this week sister kept saying well charlie you will be yourself for a long time before you change with alzheimers well the week went ok we saw them a few times and they used husbands car to get around with . but we did a cookout his idea on thursday evening but when it was time that they said good bye he wouldnt let her go she has medical problems like all of us but he did a meltdown when they went to leave our son directed his father into the house where he was pretty catatonic had all we could do to get him to bed . then son went outside and had a meltdown of his own . i have seen some of this but not this bad was a wake up call to the family that didnt want to see what was in front of them even son cant take it he settled down when i came to bed net day back to himself
I think that I suffer from caregiver blindness too, but in reverse. My husband can do NOTHING. He can not walk, talk, or feed himself. He is completely incontinent and is beginning to have trouble even sitting up. But I try to convince myself that he isn't so bad. I tell people that he still knows me and other members of the family when I know no such thing. There is no way to know. He can not communicate. He has little facial expression and rarely reacts to anything or anybody. I go to see him every day telling myself that I make a difference in his life. That he needs to see me and know that I still love him. But I think I do this because I need to FEEL like I am still important to him. When I get up close and and ask for kisses, he puckers up, but I have yet to put it to the test of someone else, even a stranger, asking him for kisses because I am afraid he would pucker up and then I would know that the kisses are not just for me.
Reading some of these accounts I believe my DH is really doing pretty well thus far..While I don't let him drive because I do know he gets a bit twisted around in town now, and I have to fix the pill box and remind him to take his insulin because he won't know by the time he goes to bed if he goes to bed, and that I have to lay out clean clothes and nag him to change, he reads the papers and his magazines, though he is not into his books like he used to be, he enjoys going out, went golfing the other day but only played 2 holes since his feet hurt ( diabetic neuropathy) he can fix a lunch and breakfast AND he has learned to operate our new coffee pot..needs a wee reminder because it is a Keurig and uses the Kcups...this is a new trick for him...and I can leave him to run errands though I cannot leave him alone over night,I still have it pretty good. However, what IS missing is the help he always was with things like getting the guy out to replace two windows, getting some yard work done..doesn't even help now, won't go to church with me, and other physical things...because of the physical issues due to the neuropathy I was blind to a lot of things before I was gone long enough last summer to see some things that rang loud bells..first thought it was vision..nope, then the breathlessness, not enough 02 to the brain..nope not that either, then took that mini test and did not do so well..probable AD, then the DX. So now next week he takes a neruopsychological test to sort of see where his strengths and weaknesses are. It really is easy to be blind to these changes. And as someone earlier said, when the daughter came for 3 days, I had that this summer..the youngest came for 2 weeks and she saw changes as did her sister when she came later..they handled it well..sometimes better that I do but then again they do not have the fatigue, and distresses of living with it day to day as we do.
My dear friend Joan,... I need to reach out to you and discuss your blog this week. I worry so much about YOU Joan, as so many of us do...., but for reasons you may not quite understand. I read that you were upset/hurt/frustrated --- because your husband didn't REMEMBER to prepare a snack of cheese and crackers from an out of sight place, inside the refrigerator, when he should have realized that his blood sugar dropped, .... same when he couldn't REMEMBER HOW to buckle the complicated boot appliance he has to wear that has mutiple straps (and air that has to be squished out)...and when he felt the need to wash his hair at an inappropriate time. I don't understand why you don't RECOGNIZE THAT THIS IS PROOF HE HAS A DISEASE THAT TAKES AWAY ALL OF HIS MEMORY. Not just names and arrival schedules. You write about yourimmense frustrations when he doesn't follow task lists, asks the same questions again and again, as if he SHOULD still be capable of doing these things ..as he always did in the past. I wonder why his inabilities make you so angry. All of us...every one of us... deal with that every day. When they goof up, we remind ourselves that it is NOT their fault., they just do not know how..any longer. If I would have left a plate of cheese and crackers out on my DH's end table,my DH would have eaten them. However, for at least three years, he , too, would NOT have gone to the refrigerator and prepared his own snack. He was unable to process: (1) I feel hunger (2)I need food (3)I know where it is (4) I can get it (5) I will eat it. for YEARS. My fear is that if you let these events upset you as much as you write they do, how on earth are you going to react when you have to totally dress him EVERY day, 365 days a year, bath him, wipe his bottom on the toilet, feed him with a spoon every bite of food that goes into his mouth, wipe his chin, wipe yours when he spits out the last bite to indicate he has had plenty. None of these involve a degree of aggression on his part. He will say, "I love you" or reach out for a hug, and smile that special little smile you fell in love with. But the constant "gotta do's" never decrease, they increase. Dear dear Joan, you know I love you, we've met in person and you know I speak from my heart.... I worry worry worry about you so much. I wish I could think of a kinder way to how to say what I am feeling.... I will say that I understand the frustrations you feel, but you need to work on your reaction to these frustrations because, barring a head on collision with a freight train, this is only the very beginning. Understand that there is no way he could EVER figure out on his own how to fasten that boot onto his foot. I've seen it done, and it's not easy. You've read a thousand times, they CANNOT LEARN NEW THINGS. I love you Joan, and just as you wrote about how your sister SCREAMED AT YOU about setting time aside for your personal self and your personal needs,.... I'm stepping into her SISTER SHOES, and I'm SCREAMING TOO, and I'm begging you to find a professional counselor who can help you walk this difficult walk and maintain your own sanity. If you don't, you'll end up having a stroke...and then where would WE all be....struggling alone, trying to make do, without you. You owe it to yourself, because you are standing on the treshhold ...and the path ahead will not get any easier. It' s better to learn how to swim BEFORE you fall overboard. I am afraid you have been so overworked with this website and your lobbying, that you've ignored your own well being and mental preparedness for not something you just read about....but something you are being forced to live with.
(Foster's Neurologist had a Clinical Psychologist on staff who worked directly with me..as part of his total care package.. It was included in the billing for his care. Ask if Sid's neurologist can provide you with the same service.)
Please don't block me from Alzheimer's Spouse for having said what I did. I do sincerely care for you and I am more than just a little worried about you.
You are such a sweetheart, and the rest of you for worrying so about me. I worry about me too, which is why I have made those in my life dance to my tune now. Things are done around MY schedule on MY timetable, WHEN I get to them.
It's not that I don't know Sid's declines are coming. It's not that I don't know my caregiving load will increase. I do. It's kind of like being on a diet. This is a stretch. so bear with me here. When I was in high school, I was the fattest kid, always. Compared to today's obese kids, I was just plain fat, but in those days, I was gigantically fat. In February 1966, I weighted 170 lbs. At graduation in June 1966, I weighed 136 lbs. NO ONE NOTICED. NO ONE. NOT ONE SINGLE KID OR ADULT. Because they were used to seeing me as fat, and they saw me every single day, they did not see the change. At the end of August, I weighed 126, and hadn't seen my friends since graduation a couple of months before. They saw me on the beach, and went nuts. The idiots thought I had lost 50 lbs. from June to August. After two weeks in college, I weighed 115 lbs, and stayed between 115 and 120 until I became pregnant 4 years after I graduated college. For those 8 years, everyone new who met me, knew me as skinny, so were surprised when I started gaining weight again. Okay, this long example is simply saying that I have lived with Sid and his Alzheimer's for so long, that I am losing perspective. I don't see the subtle changes, and when a new decline occurs, I don't realize it until it hits me in the face. Like my 50 lb. weight loss hit those kids who hadn't seen me in two months, but never noticed during the 6 months I was losing the weight.
So now I know how things are with Sid in these particular areas. I will adjust my methods, as I have done throughout this disease, to accommodate his changes. If I go grocery shopping, I will leave a plate of food in the refrigerator, and call him to tell him to eat it. I will not even THINK about asking him to learn something new, and I will simply tell him when it's time to take a shower and I will monitor it. I have managed to adjust to every change that has occurred - each has hurt terribly, and has probably taken me longer to adjust to than it takes other spouses, but I adjust.
Also, having my father here has been much more work than I anticipated. I didn't realize how much is involved in care "management" as opposed to care "giving". He is smart, though, and he figured out very fast that I am consumed with taking care of Sid and cannot take him back and forth and out for rides and on adventures that he would like.
It is 12:45 PM on Sunday afternoon, and I only just got out of bed. Am not even dressed yet. Friday is my day to do fun Joan stuff, and Sunday is my day to rest and hibernate. That's the balance in my life that I have now. It's okay.
As far as the website work goes, believe it or not, that is my therapy and relaxation. Writing is the joy of my life. Having people read it and benefit from it is an extra added bonus.
Dearest Nancy - thank you - I'm okay. And I can assure you, I know myself very well. I am not cut out to be the kind of caregiver that all of you are. When incontinence and infancy type assistance is needed, it's not going to be me doing it. I am very, very sorry that I'm not the super duper type caregiver that so many of you are, but I'm not. The troops will have to be called in at that time. I have no intention of letting this disease kill me as well as him. I do have "after" plans, and I hope to be alive for them.
I love and appreciate all of you more than you can imagine.
Joan, welcome to the NOT SO super duper type caregiver's group. Frankly, me too. I am so glad I'm going to miss the hands-on diaper period.
It would be easy to say that I got a wake up call about just how bad my husband had gotten when we made that trip to the Emergency Room, but it wouldn't be the truth. What was actually happening wasn't blindness on my part, but a period of extremely fast changes. Something new went wrong every day for about a month and it culminated with the second violent episode that I always said would result in a trip to the hospital.
It really is possible that two weeks ago Sid could have gone to the refrigerator and gotten himself a cheese and cracker snack. It really is possible that a few months ago he could have learned how to put that boot on. It really is possible that it is all that fast moving.
You might not have been blind to what was going on. It is possible that last week none of that was going on.
The two of us went out to lunch every day until two weeks before the trip to the hospital. He could still use a knife and fork properly a week before the trip to the hospital. He had never urinated anywhere odd until 3 days before the trip to the hospital. I put out his clothes but he put them on without help. I put out the makings for breakfast, but I did not cut up the fruit or pour the cereal or the milk, literally until less than a week before the trip to the hospital. It was the suddenness of it all that had the doctors at the hospital searching for some kind of infection, because even they had rarely seen anything go that bad that fast.
Starling - I would rather it go that fast than a slow, lingering decline. That is me. I am like Joan, I am not a 'to the end caregiver'. I have no desire to clean up when he pees wherever or whip his backside, or any of the other nitty gritty stuff. I struggle with moving out of the motorhome cause I would not be able to assist toileting nor have the room for assisting him in other things. Placement would be necessary then. As long as it is not paid for, can't afford both and in today's market can't be sold for what we owe.
Nancy, I want to thank you for what you wrote. I think it can apply to all of us - if not now, down the road. It would be a post worth remembering to bring up when we all need a reminder.As Starling said, it might not be 'caregiver blindness' but things moving fast.
I am not cut out to be the kind of caregiver that all of you are. When incontinence and infancy type assistance is needed, it's not going to be me doing it. I am very, very sorry that I'm not the super duper type caregiver that so many of you are, but I'm not.
Joan I am with you 100%. One of my first posts on this site was "I don't think I will make it as a caregiver". I still feel that way. My DH is still very functional in some areas but in others he drives me NUTS. I cannot take the hallucinations that never seem to end nor the questions that go on and on and him not rembering where things go. I will never be like so many on the site that seem to take things in stride. I always prayed for God to give me patience and when DH was Dx'd I said this is NOT the way I wanted to learn it. This is absolutely not nice to say but sometimes I wish he would get bad enough so I could place him. I think God is determined to make me learn patience but so far it isn't working!!!!
Sorry, Joan but when you said that you would CALL Sid and tell him there is a plate of food for him in the fridge - Jean wouldn't even remember what a fridge was. Might happen with Sid also.
Thank God for people like you. Without you I think I would really feel like I was going "crazy." You help me recognize the things I'm doing that you're talking about, to recognize the feelings you guys have that are so similar to mine, to recognize that I CANNOT be all things to all people, to realize I need to do things for myself, not just time to go run a few errands but to do things I truly love doing, things that have helped make me who I am, outside of the woman who takes care of her husband (something I have been doing all our married life, although I also had a job doing something I really liked to do). You help me realize that I need a life away from the constant stress of caregiving. I need people to understand how much help I truly need. But, I'm afraid I'm very guilty of saying I'm okay when I'm really not.
I read your posts and they made me realize how similar my feelings and needs match yours. I understand, Joan, why you do what you do. It's something that helps YOU feel whole, your way of doing something you truly love, and while doing it you're helping so many of us who sometimes feel as though there isn't anything else in our lives but taking care of someone. Not that there is anything wrong with that - it's a beautiful thing giving ourselves to someone else. But, we do need something for us alone, to help us realize our own potential. We've helped our children realize theirs (hopefully). Some of us have taken care of elderly parents, some have taken care of sick children and now must take care of their spouses. No one outside of our circle here really truly understands what we are feeling or what we are going through.
Joan, I admire you very much for what you're doing, both in taking care of your father and husband and taking care, in a way, of us.
Well said, Nancy. I guess, Joan, we are somewhat surprised that you don't seem to "get it" quickly when you do such an excellent job in the advocacy and education aspects of AD.
As for the hands-on diaper business, I always thought that would be a line in the sand for me, but it's actually been very easy. I used to be amazed at Divvi's comments but now I understand. It's really no big deal and being able to assist underwear changes for a compliant spouse is much easier than fighting over driving and car keys. My DH is much farther along than I ever thought he'd be and still be at home. Don't know when or if placement will happen; just taking it one day at a time. I will say having very competent in-home help has been a Godsend.
bravo weejun!! we have been saying all along once the 'initial' shock wears off of first duties its not so bad. and yes having good help is a blessing. i am glad you havent had to cross the line just yet! divvi
I think Weejun zeroed in on the crux of the matter with the word COMPLIANT. We aren't at the diaper stage yet, but I think I've come to terms with it and will be able to handle it when it happens, if my husband continues to be compliant. Not to be too graphic, but people aren't turned off by changing an infant's diaper--it is accepted as part of life. (I recognize, of course, there is a difference in quantity which may complicate things and a huge emotional hurdle.) This may sound like a strange question--please understand I am being sincere--why are people so turned off by incontinence? I understand cleanups are labor intensive, but I hope I will be able to look at it objectively, it is a result of an illness, etc. I agree with Weejun, I'm thinking it will be easier than the early stage when anger was just below the surface with DH and arguments erupted over many things. (Maybe if there is someone "up there" controlling things, that's why he gave us the rotten early stage, so that anything later on would pale by comparison?).
The issues that would make me consider placement would be (1) aggression or (2) if he stops sleeping at night and can't be medicated to do so. I am hoping that these things don't happen so that I can keep him at home--bottom line is, I think he will get better care that way--where I can hand-pick hired caregivers to help me.
Marilyn, I'm guessing the issue people have with incontinence is the odor and the efforts and physicality of cleaning up and washing of clothing, bedding, upholstery, rugs, etc. I DO NOT KNOW FIRSTHAND so please those who do, fill us in with facts. I'm basing my assumption on living with dogs who weren't yet potty trained or who developed urination issues after moving. Forgive me for making the dog to human comparison, but would rather clean up poop than search out and wash up after pee any day.
DH is not yet at that point so hope some who are living with incontinence and especially those who found they could NOT live with it will chime in here.
Terry-- I was raised by a Mom who was sort of a neat freak (I mean that in a loving way) and have interior design was my second career. Consequently, I bet there aren't many that derive more enjoyment from their home, and I fully expect to be frustrated with the cleanup routine at first. But, as Divvi said above--after the initial shock wears off, I hope to get over it. It would seem to me that there's a learning curve, where by process of elimination one determines which products will work well, have the best fit for a particular person, how to get the LO into a routine, etc. I am interested too in hearing from others who have learned to deal/or not deal with the issue. Bottom line is, it's not an easy situation to handle, but there's nothing about managing this disease that comes naturally!
The discussion of cleaning up incontinence and baby diapers reminds me of my first year in medical school. I was 2 years away from getting married and never had to deal with younger brothers or sisters, so had NO experience with diapers. During Physical Diagnosis I was assigned to a baby in the pediatric ward. I found that he had a VERY messy diaper, so went to the instructor to get some help. The instructor told me, in no uncertain terms, to "clean it up yourself". That's how I learned to deal with this stuff, so now I can clean my wife with not too much problem, as long as she is compliant.
marsh, compliance really was the issue with my husband. He wasn't. And it was a lack of compliance and an unwillingness to stay in the house and be safe that got him sent to the hospital and then the nursing home. He wasn't safe, and I wasn't safe.
But still, I was beginning to deal with incontinence issues as well. And it was the two things together that were exhausting me. And he wasn't even in diapers yet.
I was appehensive about incontinence issues that I knew were coming. I couldn't imagine how I would handle it. Then I read a link from this site, to bigtreemurphy.com, specifically at http://bigtreemurphy.com/It's%20Just%20Poop%20People!.htm Now I don't remember the first time that I had to deal with it, but I do remember that it was not a bigger deal than any of the other stuff that each of us had to/is dealing with. Look at all the accomplishment that each of you has already done. How many could you not imagine being able to do not so long ago. Sure, you get tired, your get angry, you get frustrated; but you press on. One more step, one more day. You know why you do it. Sometime I would like one more day.
Besides not having room in the motorhome for doing a lot of the care like that, my problem is rooted in the sexual abuse as a child. One of my abusers made me masturbate him and even though I got over it mostly so it didn't hinder our marriage too much, having to clean it will cause problems. When my bil would have to be changed, I tried to not be around to help my sister but there were times I was. It was 'disgusting' to me cleaning him - flash backs. Whether this will happen with hb, I don't know.
Charlotte, I sympathize with your difficulties and probably would react the same as you in the same situation. However, my husband's incontinence was not a big issue with me. It was simply a fact of life. All of us eliminate waste from our bodies and that waste needs to be cleaned up and disposed of. I did it willingly and with a minimum of fuss and bother. I guess the clincher for me was the lack of sleep. When he would no longer sleep, I could no longer care for him.
Getting back to Joan's original thought of caregiver blindness.
It often surprised me during the course of the disease how others thought he was in such bad shape and I did not see it. What I neglected to include in the equation was the fact that I was used to handling him and his difficulties and often did it without thinking so he was better able to handle himself. Others who saw him a lot less often did not know how to do that. Even now, I can often get a response of some sort out of him where others will get nothing.
I promised him that we would not give up one thing until we had to and I was there to enable him to continue doing as many "normal" things as he could. It took me a long time to realize that he did as well as he did around me because I enabled him.
So was I blind or did I know how to handle him to help him get the best results he could? Depending on the day, it could have been one, both or a combination of them.
Joan, I don't usually respond to the blogs however this time I feel I must. You are just fine Joan, you are doing nothing that most of us did not do in the early stages of the disease. I remember saying over and over how in the world can he forget thus and thus? it was overwhelming to say the least. I was determined he would learn and remember, I could not imagine anything different, you repeat something often enough and they would learn. I did not stop to realize that it was not a normal thing to have to do this, You do this with children not 60 year old people.
I honestly do not think it is caregiver blindness Joan, I think it is the fact that you are still in the stage with Sid of a certain amount of denial. I know I was in denial for 6 years. Yes 6 years. We all handle things in our own way. You are re-acting to the devastation of the disease itself Joan and nothing more. YOU ARE FINE, YOU WILL HANDLE THIS AS IT COMES, AND YOU WILL GET THROUGH IT.
I went away to Monhegan for a week, so I'm way behind in reading the discussions. While I was gone the inestimable Andrew was here, tending L., cleaning the garage and finding the old a.c. to install, edging the sidewalk which hadn't been edged in YEARS! etc etc. He was here again yesterday when I went to the zoo (new baby giraffe!) and came back at night. L. behaved himself and was pleasant all the time. I thought, my, he's BETTER than he was when I left.
But Tuesdays and Thursdays Andrew doesn't come until a quick visit at bedtime, and the CNA from Hospice comes. Today he yelled a lot with the CNA and wouldn't get off the commode, so I told the CNA to leave him, I'd move him. And with much pulling and straining I did, with him in his repeat-every-word phase he gets into from time to time. I realized that no, he's not better, that the difference really is Andrew, that without him there's no way I could cope.
Before I left, pretty much the whole month of June I was concerned with trying to decide whether or not to keep him at home or put him in a facility. Since he can't walk, is incontinent and hard to move around on the bed, for instance, he'd have to go into a nursing home, not a "halfway house". And he'd yell. And they'd have to drug him to shut him up.
And if he's drugged up, there's no particular problem with having home here as long as I have in-home help. WHICH of course is much cheaper than a nursing home and more convenient for me. So I decided he will stay home, for the duration, unless Andrew flees. The lines in the sand have been erased.
Briegull, that is how I felt once my husband became bedridden......it was much more convenient for me to have him at home and at $7500/month at the AD facility, I could save a boatload of money. Plus I could pay for a lot of in-home care for that price. I had people who worked at his AD facility who helped me at home when I needed it. It worked great. Your Andrew sounds like a gem....I am happy you have him.
Sure, I could have moved him to a skilled NH at that point and saved a few bucks every month, but knowing I would be there most of the day anyway I made the "bring him back home" decision.
You are very perceptive. I actually had a line in the first draft of the blog about denial, but I didn't want the discussion to focus on denial, so I took it out. It's no longer denial about the disease, per se, but each change is a "surprise", so yes, perhaps there is some denial in the mix. As you say, "How can he forget thus and thus". Well, it hits me in the head that he can forget it because we're moving along in the disease, but I don't see it until it becomes obvious enough to fall over.
Re n.h. - Joan's an excellent example of what I'm thinking about - there's so much coordination and care when you have someone in a n.h. that it's possibly a cure worse than the disease!
At the request of friends, I posted pictures from Monhegan in Picasa: http://picasaweb.google.com/briegull/Monhegan2010#
There's also an article in this month's AAA magazine for the Hoosier motor club - I supplied most of the pix.
Joan, that is exactly as it is: We do not see it until it hits us in the head because it is such a gradual thing and then all of a sudden it seems big and drastic. Yes,, there is denial in the mix because it is so hard for the normal person to realize a disease can do all this. YOU ARE NO DIFFERENT in this than anyone else on this journey in your awarness of what has and is happening, it is just that some have been on the journey longer and how quick we can forget the early part of the disease and how WE all reacted until years passed and we adjusted, accepted, etc.
thinking a bit on this subject and the caregiver blindness - feels more like the 'phantom limb' syndrome to me. the loss of a limb or body part and the ability to still feel pain and sensations over the loss. inevitably mental denial that the limb is gone and so the mind creates phantom pains. only in this case its the brain we have lost. we still feel the pain and sensations of the enormous loss and so justly avoid recognizing symptoms as they happen. when the body loses a limb the mental and physical must come together and remapp mental and visual perceptions to be able to adjust to the enormity of the loss. same thing with the loss of a brain. only its us the other spouse that has to come to terms with the remapping sequences. i would say the 'acceptance' term we use in caregiving means the physical and mental merging as finally come together and the phantom pains cease.