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    • CommentAuthorkirkland
    • CommentTimeMay 3rd 2012
     
    I'm a new contributing member but have been reading for some time. My LO, Jim, was diagnosed with Alz December '09. He's 72 and I'm 65. He is taking Seroquel as of 3/28 (25mg am and 50mg pm) and Lexapro, which he's been taking for 2 years (10mg pm). To decrease his drug load, it was recently (4/18) decided by his MD daughter, who has medical POA, and by his PCP to eliminate bp med, cholesterol med and aricept.

    Since dx, everything's been going along all right, which is to say it's been manageable, until recently. Now we've hit a bump. Problem areas: with the exception of going to choir, he won't leave the house; he won't shower (as of a month ago, he was showering 3-4 times a day), and he won't change his clothes. From reading I've done, I understand that the showering and clothes-changing aren't unusual with AD progression, but I don't really know anything about the won't-leave-the-house thing. I'm wondering if it's an effect of seroquel. (Before seroquel, he was doing a bit of wandering and got lost a couple of times - he now carries a GPS device - so I guess his not leaving the house at all is not an altogether bad thing for him, but it's a bad thing for me.)

    My questions are 1) how to get him to shower (I know there's been lots written on this, but a refresher course would be so helpful) and change his clothes, and 2) have any others experienced a refusal to leave the house?

    I admire you all so much, have learned so much and look forward to joining the discussions.

    Thanks,
    Kirkland
    • CommentAuthorZibby*
    • CommentTimeMay 3rd 2012
     
    Welcome, Kirkland. My hb stopped taking showers and wouldn't let me help him. BUT I hired a man to come in 3 hrs every Friday to help hb shower, dress, etc. Then he took him for a walk around Wal-mart and a root beer. Incentive enough, I guess, to get his cooperation. Norm came to the house to visit with us prior to his beginning his "job." He joked with hb and they hit it off. They also sang together. So, it was a non-threatening time for hb. (I, the witch of the north) wasn't there:)
  1.  
    Kirkland--Glad you decided to take the plunge and post. If you click on "Search" at the top of the page, you can put in key phrases to search for the previous threads on bathing and showering. You are right, the issue has been discussed at length here.

    What jumped out at me from your post is the stopping of his BP med. I'm not a doctor, but to me, keeping the blood pressure at good levels is important in everyone to prevent a stroke. Especially for a dementia patient, where the brain is already compromised, stroke prevention would take on even more importance. I'm all for reducing drug load, but that one seems a tad imprudent to me, unless he is having serious side effects from it. You don't want him to end up with vascular dementia on top of the AD when a simple pill may have prevented it. BP medication is the ONLY non-AD related prescription my husband takes.
    •  
      CommentAuthorJudithKB*
    • CommentTimeMay 3rd 2012
     
    Welcome Kirkland: My dh never wants to shower either. It has now been a week and half since he had a shower. He also didn't want to shave...so I now have him growing a bread. Someone on here or some place else I read said "no one ever died from not showering". I thought that was a good one. My dh also seems not to want to go any place much either. I think for my dh it is because his walking is so much slower and even has a slight limp, I really don't know if that is it or not. I will be interested to see what others say about not wanting to leave the house.
  2.  
    Welcome, Kirkland. I'm an RN and I agree with MarilyninMD about the B/P med. Why borrow trouble.
    • CommentAuthorkirkland
    • CommentTimeMay 3rd 2012
     
    Thanks so much for immediate replies! I like the "Why borrow trouble" response to bp meds. Will definitely follow up on that.

    As luck would have it, Jim did shower this evening - and washed hair - because he really wants to go to choir rehearsal tonight and I suggested (ever so sweetly, biting my cheek) that he might want to be clean for choir and he agreed. Now he's napping.

    And yeah, I agree that no one ever died from not showering. I haven't been fighting his non-shower regimen, but there are some times other than choir when a shower would be good, so maybe I can think up some other motivations (other than choir) that will work.

    Zibby, I am so happy you found outside helper who 'hit it off' with your hubby. So far, Jim has refused any outside help ("I don't NEED any help") except for his children (they're his children,not mine), and he's even tired of their help (shoved his son out of the house during one respite stay, thus the increase in seroquel).

    Thanks, all for the welcome. So happy to be here.

    Another question: the not-changing-clothes thing seems kind of icky (like when I exchanged clothes during this evening's shower, the used underwear was pretty gross and I don't want to encourage UTI's or anything. He has been tested recently for UTI and it's been clean, and I want to keep it that way.)

    Tips for changing clothes? (This is another recent development - he now insists on sleeping in his day clothes and does not want to change them in the a.m.)

    Thanks so much,
    Kirkland
    • CommentAuthorcarosi*
    • CommentTimeMay 3rd 2012
     
    Seemsto me, someone "accidentally" spilled on an LO, necessitating change of clothes.
    For my DH., for 5 years he had his shower every Tuesday because "only clean people were allowed to ride in the helper's car",and he wanted to get coffee at the store and watch the people while the helper did the shopping.
    • CommentAuthordivvi*
    • CommentTimeMay 3rd 2012 edited
     
    my fisrt hospice dr cancelled DH blood pressure med as well and i had a hissy. after it rose to 200/110 within days i started it again and fired that dr. the new lady dr agrees that cutting that vital med could lead to comatose or worse a severe stroke that doesnt kill but only severely maims and leaves them worse than before.
    good to see you joined in the posts. welcome
    divvi
    • CommentAuthorElaineH
    • CommentTimeMay 3rd 2012
     
    Welcome kirkland! My DH wouldn't change clothes on his own either. I'm lucky that he does take a shower every other day (after much prompting by me) so when he is in the shower I take his dirty clothes (which he wasn't happy about taking off in the first place) & put them in the washer & lay clean clothes out on the bed. Like I said I'm lucky that it works for us.
    • CommentAuthorLFL
    • CommentTimeMay 4th 2012
     
    Welcome Kirkland, glad you joined us. DH doesn't like to shower either, but we have an aide, so I no longer have to deal with it. The aide is very creative in getting DH into the shower-some days it's marching in the bathroom with eventually one foot in the tub, then on the next march tow feet in the tub. The substitute aide we have right now tells DH he's beginning to smell and suggests he cleans his arm pits, then goes from there and finally gets DH into the shower. He plays on his desire not to smell when we go out. The strategy we use for clothes is the same-when he's showering we take the dirty clothes and replace with clean ones.
    • CommentAuthordivvi*
    • CommentTimeMay 4th 2012
     
    it may also help to keep his clothing in the same line of color schematics. big change in colors may cause alarm. they tend to have vision issues as well with this disease so things can become quite distorted.
  3.  
    Aloha Kirkland! Welcome it is nice to see you posting, God bless you along this journey along with all of us.
    •  
      CommentAuthorJudithKB*
    • CommentTimeMay 4th 2012
     
    I got my dh in the shower this morning the first time in a week and half. I told him he had to get in and I would help him. I was just waiting for him to say.."I don't need any help"...but, he didn't say anything at first...he just stood still, never walking to the shower or starting to take clothes off. I was very sweet and gently with him... I said things like, "here, let me help you take your undershirt off"..."let me get a towel and wash cloth for you"..all the time kind of moving him towards the shower. I finally said, "Hon, are you afraid of the shower"...and he said "Yes". So I said..."do you want me to help you get a shower?" and I nearly fell over when the answer was yes.


    The major problem is the shower head it up on the shower about 7 feet and the shower has two glass sides which looked like it could be dangerous for the two of us to get in there. So, I did the best I could from outside the door and of course, I got wet and the floor got wet. Going to have to have that shower head replaced so I can just kind of hose him down. But, at least a shower for now is wonderful.
  4.  
    JudithKB, I want to get one of those shower chairs, have you seen them? I used that when I was taking care of my sister. Maybe your sweetie would like that, he can just sit on the chair, and you can use the shower head if it detaches, it is so much easier, and I would like to use it too!
    •  
      CommentAuthorJudithKB*
    • CommentTimeMay 5th 2012
     
    I have one of those shower chairs, but that shower head does not detach. I think later in the week when I want to give him a shower I will try the other bathroom that has a shower with tub and the shower head
    detaches. The entire bathroom is smaller, but I will try it and I can even put that shower chair in that tub
    and it would be much easier to get the shower done without me getting wet and the floor getting wet.
  5.  
    As a former health care prof, I'd like to suggest a little prudence regarding the commentary such as had been made on Jim's BP meds. None of us is privy to
    A What is Jim's BP is now. OR
    B. What effect did withdrawal of the meds have on his BP. You are fortunate to have an MD in the family . The BP med may have been a diruetic which at this stage may precipatate more problems than it's resolving. Withdrawal may also be part of a predetermined philosophical treatment approach to as to how agressively does Jim's daughter want to pursue life extension. Many, myself and DW included, don't want much of anything done to prolong our lives - comfort care is all we want and demand. Our Neuro, PCP an Oncologist are fully aware of our desires and thus far have respected our wishes unquestionably.

    If Jim's daughter, an MD with Jim's Medical POA and Jim's Primary Care Physician agree to a course of treatment our questioning their motivations and professional judgement may only lead to a distancing of relationship be our new member KIrkland and Jim''s daughter. Comments on side effects, and sharing of common drug related experience and how you dealt with them is fine. I feel playing MD is going over the line, it's not like Jim isn't being cared for.
  6.  
    marty-I don't think any of us are trying to play doctor-just expressing what we have been through, our decisions along the way, and our reasoning.
    • CommentAuthorLFL
    • CommentTimeMay 5th 2012
     
    Judith, you probably already know this-many people with dementia are afraid of the water coming out of the shower head. My dh certainly is so we run the water from the faucet and have him feel it to make suer the temp is ok. He won't sit on a shower chair so we get him into the tub, standing and then turn on the shower. It takes some time but after a while he's ok with it. We can't get him to sit on the chair or in the tub but I am looking into a hand held shower head to see if that helps.
  7.  
    marty--I agree with Bluedaze. We are just exchanging information so that Kirkland is aware of how others have dealt with similar situations. Certainly, no one is suggesting that she do anything to harm the relationship with her husband's daughter, but it doesn't hurt for her to be informed. In my post, I did mention the possibility of side effects being the reason for curtailing the BP med, the same thing you referred to if it was used as a diuretic.
    • CommentAuthordivvi*
    • CommentTimeMay 6th 2012
     
    none of us ever have tried to profess to be a medical or legal professional here with our comments. we expressly post from our own observations and experiences so others who may have similar experiences can make their own interpretations and take or leave what they want from every post offered. none of us expect an individual to react soley on information posted here without consulting with their own drs /attys and what would be appropropriate for their own case. the medical and legal communities are not without fault and sometimes a clear challenge would be in order to decide the course of action with our loved ones. this disease is relatively new and so we here try to post the good and bad issues that crop up with some treatments. 'playing dr' is not anyones intention but only for the purpose of observation and helpful ideas. there are several informed real doctors on this site that do offer invaluable insight to those of us who are in need of first responses at times. we dont hold anyones feet to the fire for suggestions or offers to help someone in need.
    divvi
    • CommentAuthorms. magic
    • CommentTimeMay 6th 2012
     
    Well stated, divvi, Marilynn and bluedaze*.

    There is so much valuable information here, with personal experiences and observations.
    I believe people who post here are intelligent enough to weigh the information and take from it what benefits them.
    •  
      CommentAuthorJudithKB*
    • CommentTimeMay 6th 2012
     
    Usually when my hd's doctor starts him on a new medication I will ask him if I can increase it if I think it might help. So far the doctor has always said yes and usually he will say cut the tablet in half and increase it slowly or something like that. I have also asked the doctor if I could take him off the AD medications because I don't think they are doing much now and the doctor said "NO"....so I continue them.
    • CommentAuthorAdmin
    • CommentTimeMay 7th 2012
     
    Kirkland,

    Welcome to my website. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.

    The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".

    Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.

    Now I'd like to put my 2 cents in about the showers. Maybe no one ever died from not showering, but their spouse could choke to death from the smell. I absolutely refuse to sleep in a bed with my husband when the whole bed smells. Since he is so attached to me and doesn't even want to go to bed (regardless of the fact that it may be 8 PM) without me with him, I now tell him that I will not sleep in a stinky bed, and he either takes a shower or he sleeps alone. He doesn't understand how he could possibly smell, since he "doesn't do anything", but the fear of sleeping without me gets him into the shower. In his defense, it is extremely difficult for him to shower, even with the chair and the handrails, because he is so physically disabled from the Diabetes, and now the AD is breaking down his body. As of now, he insists on doing it himself, but I don't think I'm going to let him much longer.

    www.bigtreemurphy.com has good tips on showering.

    joang
    • CommentAuthorkirkland
    • CommentTimeMay 10th 2012
     
    Thanks for the many welcomes and ideas. Joan, thanks for this website. I agree that "Understanding Dementia" is a great overview; I read it early on and have strongly recommended it to Jim's 5 kids (some read it, others not) as well as to other family members.

    Re bp med: Jim's bp over the last 2 years has consistently read 110-120 / 70-80. The intial reason stated by his daughter for discontinuing his bp med (lisinopril 10mg) wasn't related to any side effects, rather it was to reduce his drug load, thereby hopefully encouraging his compliance in taking seroquel, lexapro and aspirin (like, if he had to take only two pills at a time, he'd be more likely to). So far so good on that one (mostly).

    I followed up about this with his MD daughter, asking her if maybe we shouldn't be so hasty in abandoning the lisinopril. She said that, given that his bp has been steady over the last 2 years, it should be ok (and this was seconded by Jim's PCP).

    However, we'll be monitoring his blood pressure frequently to make sure there isn't a sudden surge.

    Re showering: I like all the ideas - like "marching" to the shower (he loves the opera "Aida" which is a great marching tune and we like singing it together, so I'm going to give that a shot); making sure the bathroom is warm and cozy, towels laid out, making sure water temperature is right.

    It doesn't seem to me he's "afraid" of the shower. On the other hand, at this point he seems "afraid" (or anxious or something) about leaving the house, so there may be some fear involved in showering, too. I think I need to be a little more proactive on this one, ie addressing the shower issue step by step, helping him undress, testing the water temp. I think he'd resist this, but seems we're at a new place, so I should at least try it. Also, since he is a prideful fellow, telling him he smells might just do the trick. Also I'll check out bigtreemurphy.

    Re changing clothes: If he gets into the shower, no problem, just switch the clothes, as suggested. But If he won't shower, I'm stumped. What he says is, "I just changed my clothes." But - aha! - if I buy him a new bright red shirt, he just might be inclined to put it on, and then we can work on the other pieces.

    Re leaving the house - or not leaving the house. I'm thinking that his not wanting to leave the house MIGHT be a phase - hoping so - so for now I'm letting it be. He seems happy enough staying home - he sketches and paints a lot (omg, there are paintings EVERYWHERE) and has even started painting starbursts ON the house - whimsical, yes; colorful, yes; design-review acceptable, not so sure.

    His refusal to leave the house really is much more a problem for me. My next planned respite day is Wednesday and till then, I'll be asking friends to come over for an hour at a time, just so I can, um, well, not be HERE.

    This morning, he said, "Let's go to Fred's garden today" - Yay! and then two minutes later he said, "I'm staying home today to paint." Then he said, "Let's go to Donna's today," and two minutes later, "I just want to stay home in meditational mode."

    Another question: Has anyone seen an appetite grow voraciously - especially for sweets - when your LO is on seroquel?
  8.  
    Cravings for sweets in Alzheimers is well documented. From the Natl inst. of Health
    "Abnormal sweet-food craving may occur in subjects with Alzheimer's disease. This behavior may be due to abnormalities in the brain serotonin system.".
    I should buy stock in Pepperige Farms and Hershey, there isn't a cookie or chocolates she'd turn downer pass by.
    Try the search feature at the top of the page and search under sweets
    •  
      CommentAuthorNikki
    • CommentTimeMay 10th 2012
     
    Kirkland, I missed your original post so I am late in welcoming you to our forum family. Welcome ♥

    My husband Lynn went through a period of time when he did not want to leave the house either. When I did finally get him in the car he started right in about when we would be back home and he asked this every couple of minutes. I never did figure out why his anxiety was so high about being away from home. Medicines didn't help, I couldn't stand to see him so upset so I pretty much became homebound too for several years. Respite is wonderful and I am very glad you have some!

    Ahhh the sweets, I think this is just par for the course for some and not due to medications. Lynn's cravings for sweets started early, before Seroquel. He hasn't had Seroquel in over two years and to this day his sweet tooth runs rampant :)
  9.  
    Kirkland--yes, Seroquel caused my husband to crave more carbs. Had always worn 36" waist slacks, went up to 42". I understand weight gain is common with that drug. However, as the disease progressed, he lost all that weight and more. The ability to taste sweets is the last one lost, so many older folks--with dementia and without--still enjoy them when other tastes fail.
  10.  
    Please excuse my spelling on my prior post, I'm experiencing significant pain in and temp. loss of vision in one due to post op issues. Blind in one eye & mind clouded by Percocet, not a good thing
  11.  
    marty-sorry about your eye.
  12.  
    Did someone say they wanted to Play doctor?? I always wanted to do that, but could not find many patients that would allow me to do it... I am ready to volunteer, can always give a second opinion (or third or fourth), and my fees are almost free,,,
    •  
      CommentAuthorNikki
    • CommentTimeMay 10th 2012
     
    hmmmmmm, that depends... do you make house calls? <grin>
  13.  
    Yes-phranque does make house calls :-)
    • CommentAuthoracvann
    • CommentTimeMay 11th 2012
     
    My wife is not on seroquel, but her craving for sweets started about 1 year after her AD diagnosis. I now keep a 'mini-pantry' of sweet stuff on the couch for her so when we watch TV every afternoon and evening she can reach for her M&M's, Hershey bar with almonds, chocolate chip cookies, etc. whenever she wants them. I set up a basket with stuff for her that I keep refilling because she can never find what she's looking for in the kitchen. This 'mini-pantry' basket makes it a lot easier for me because I no longer have to constantly get up to get her the sweets she wants! True, she has gained quite a bit of weight in the past few years, but at this point ... who cares?
    • CommentAuthordivvi*
    • CommentTimeMay 11th 2012
     
    even in late stages, DH seems to relish his desserts. its about all they have left is the enjoyment of food that makes them happy!! i make desserts all week just for DH and love his smiles -they have so little left so let the sugar flow!! btw- i make alot of them like cherry cobbler yesterday with the splenda sugar. it works well and isnt quite as bad-
    divvi
  14.  
    In the past year I have noted that dh has a sweet tooth to end all sweet tooths. He always had to have dessert but now it is much more. He is snacking on sweet stuff, eating twice as many desserts. His weight never fluctuates and, as of last week, he was not diabetic. I manage to get good food into him. Maybe there is a heightened connection between the taste buds and the damaged brain. In the grand scheme of things, it isn't important. I just keep shopping.
  15.  
    AS to the sweets question...I try to have somewhat healthy sweets..I may have banana muffins or blueberry mffins and ice cream is the big target...so I get the WW portion control sizes or Skinny Cow ice cream cones. The real treat is a bowl ( rice cup size) of ice cream with a few nuts and sauce on it. And for special events some cake or cupcakes...He is diabetic so for now this works.
    His appetite is not one where he would eat anything not nailed down..it is the opposite he is always "full" but he does graze some during the day..
  16.  
    Changes that I made that have facilitated the showering issues:
    A: I replaced the hot and cold water faucets with a single lever that goes to a predetermined mix of hot and cold water providing the same temperature every time.
    B: Installed a massage type shower head, hand shower and a shower bench. (Home Depot) I found the chair with back inhibited my ability to help DW wash her back. Showering was formerly an issue, now with the massage and the bench I can place her in the shower (visible right off the bedroom) in the event of an accident (99% of her accidents happen while in bed) while I clean up. She could let the massage spray hit her back all day were it not for the hot water bill.

    Regarding the sweets and weight gain – I spoke with our primary about DW's need for sweets, ice cream & cookies and the resulting weight gain. He looked at me and said: “So What ! Do you really see any benefit in denying her anything that gives her pleasure at this stage of the game? Your goal is to prevent any events that could trigger anger or agitation. Let her eat whatever she wants!
    I think it was savvy real world advise in keeping with what I perceive my goal is: to make each day as pleasant as possible for her.
    I really don't care if long term her weight gain or cholesterol could have life shortening results. I'll take today and make it a good one one day at a time
    • CommentAuthordeb42657
    • CommentTimeMay 11th 2012
     
    Welcome Kirkland, there isn't much to do about the shower thing or clothing change thing except for to remind them to do it might work. The different things that you could do that have been written here to remodel the bathroom do help but the bottom line is eventually they stop working too but we have to keep trying different things anyway, no other choice! My husband doesn't go outside because he is afraid of falling. We live in an apartment and the walls are very close to each other where he can grab them easily when he is about to fall.
    • CommentAuthorxox
    • CommentTimeMay 12th 2012
     
    Addiction to sweets is very common in FTD, but is understandable in AD. When the executive function is damage you often see a lack of self-control. There also seems to be taste changes, together this results in lots of eating of sweet things. I am fortunate in that L can often resist sweets but you can see how attracted she is to them, the temptation is definitely stronger than it was a few years ago. Perhaps she is able to resist due to all of the gum she chews and Gatorade 2 she drinks (ever since her head injury she drinks large amounts every day, she gained a lot of weight due to Gatorade but Gatorade 2 is diet Gatorade an has help, the salt in Gatorade help prevents her salt levels from going too low). She insisted on buy some candy for the family last weekend but no one has opened it. Her urge to buy some sweet stuff is strong than her urge to actually eat it.

    BTW, the drinking is due to brain damage and is known as Diabetes Insipidus. It isn't not diabetes as we know it and there are 4 unrelated possible causes, each with its own treatments with no assurance that any treatment will actually work. Since we ruled out the dangerous possibilities, such as kidney failure, we just don't worry about it and simply buy lots of safe stuff to drink. Thankfully she doesn't want soda.
    • CommentAuthorElaineH
    • CommentTimeMay 12th 2012
     
    paulc, It's interesting that you said that her urge to buy some sweet stuff is strong than her urge to actually eat it. My DH went through that about a year ago. Anytime we checked out at at any store with candy by the cash register I had to buy him a candy bar. When I gave it to him in the car he just put it aside & never actually ate it. After a while & a slight decline I could tell him that I had “one of those” at home for him & that would satisfy him (of course he never asked for it once we got home). Now the only thing he craves is ice cream & I buy the big gallon & a pint bucket! (& the grandkids help him eat it!)
    • CommentAuthorkirkland
    • CommentTimeMay 13th 2012
     
    All, thanks for the conversation. You're the best.

    Lo and behold, Jim left the house with me Friday, willingly and enthusiastically (and he even showered and changed clothes). It must have been the combined effect of all your comments, which are GREATLY appreciated.

    Not only did he leave the house with me, which was wonderful enough, but we had a day like a pre-AD day. Okay, so I'm not expecting this to mean a permanent turn-around, I'm just so grateful.

    We went to our favorite museum, enjoyed the exhibits, had lunch at the museum cafe and had a real conversation, talked and laughed and even made jokes in German and Greek. Unbelievable.

    Once we got home, the repetitive statements started again. So be it. The day was a gift while the beat goes on.

    Nikki, thanks for sharing your experience re Lynn's not wanting to leave the house and that meds didn't help the situation and that you, too, became housebound. I'm in awe of your fortitude. Myself, I can't be housebound for long. So I guess that's good to know.

    Marty, your spelling looks fine to me and I enjoyed your PCP's comment re increased sweets: "So what?"

    divvi & shirley: Yes, I too am not too concerned about increased sweets. Have to laugh about "I just keep on shopping." Yikes, it gets expensive.

    Mimi, good idea about WW controlled portions.

    paulc, agree that lack of impulse control is part of the thing here. Interesting about Diabetes Insipidus, and if serious implications are absent, "just don't worry about it."

    So as the beat goes on, I am listening.
  17.  
    Awww, kirkland, so happy about your day! I am not surprised that your husband responded so well. Keep going back to that favorite museum--I'd do it once a week! Our local Alz Assn has a program called Partners in the Arts, where special tours are arranged for early stage people with dementia and their care partners. The docents are specially trained on how to communicate with this audience, and it's been a big hit. Art is often used as a way to connect with people with dementia. Clearly, being in a familiar place associated with pleasant memories of the past stimulated him and you need to draw on his interest in art and can use that to give him pleasurable experiences well into the disease.
    • CommentAuthorkirkland
    • CommentTimeMay 14th 2012
     
    marilyninMD, the Partners in the ARts program sounds like a great program.

    As you suggest, I look forward to returning to museum often - prior to April, we'd been going every few weeks, but since then the problem has been getting him to leave the house. Friday was the first time he'd left the house with me in 20 days; the last few days, his first morning words have been, "I'm staying home today to work on my sketches." Wonder what flipped the switch.

    The only variant I can pinpoint is that the previous night he'd had an outburst of rage, telling me to leave the house, "This is my house and nobody else's", etc.

    Maybe on Friday he was feeling remorseful and wanted to please me to make up for it, and so he agreed to go (and even shower and change clothes). Even if this were the "reason" (although "reason" probably isn't the right word), I really don't want to go another round of rage just to get a day at the museum.

    But maybe, given that he does seem to want so much to please me, I could ask him out on a date as something that would please me so much. In the meantime, he is happy and calm sketching and painting, provided I am right here.
  18.  
    Kirkland, you're right--rage is to be avoided at all costs. I never faced a problem getting my husband out of the house--he was always happy to go anywhere I wanted. Maybe others who have faced this will have some suggestions. I think the "date" idea is a good one, though!
  19.  
    Hi Kirkland: in keeping with our MDs comment, I spent the afternoon with DW picking out shorts and tops trying to get some input from her. Lands' End no iron Bermuda shorts with an elastic back waist cover a multitude of sins. She'll get fixated on a specific top and shorts combo and stick with it rejecting all else - pick 3 colors and get 3 of each, not too many choices and clean one's always available.

    In spite of occassional inappropriate childlike behavior (trying to touch the art on display) I still take DW to our local
    museums, The Norton, and others for each new show and she too loves the outing.

    Thus far rage has not been an difficult issue. I've often wondered if the rage issue is not as frequently mentioned here by male caregivers because the behavoir is not reinforced by the caregivers reaction, fright and intimadation When DW goes into one of her, thus far, rare angry phases, a stern, "this is going no where cut it out!", combined with blasting 60's R&R or disco and she's off to another one of her world's.
    Just due to size and strength differences there is nothing DW could do to intimidate me. I know all too well from the multitude of terrifying events posted here the converse is not true. Who knows what goes on in their minds.

    I won't even mention the one eye'd guy taking DW shopping for Bra's at. Macy's. Thank G-d for good sales personnel. (Joan's suggestion to male caregivers was tried - sports bra's DW' rejected Yukkie ugly LOL)

    Eye MD trying contact lens "bandage" to minimize on going corneal abrasion and severe PAIN!! Hopefully spelling is ok
  20.  
    In reply to Marty's comments - My wife rarely exhibits rage, but occasionally she will get stubborn and resist what I want her to do. She will tell me, in no uncertain terms, to "go away". With that I just walk away and come back a couple of minutes later. By then she has forgotten what she was mad about and goes with me peacefully.

    With regard to clothes, after having to remove her slacks or shorts in order to change wet Depends I switched her to a dress which I can just lift up.
  21.  
    Thanks Mars!! just called, order hadn’t shipped yet, deleted 2 shorts and added 2 sun dresses to my order. Much appreciated.
    off topic apologies
  22.  
    Wish we could put our guys in a sun dress! LOL
  23.  
    Dazed--you may be able to at some point! Unsupervised, my friend's hb (with AD) put on her tennis skirt and wore it to the health club to work out in :) She was quite astonished to return home and see him in it!
  24.  
    Kilt??!!