Experiment

Just Bill

My wife is in the hyperactive can't sit still gather and pile stage of her illness and over time I sound like a broken record saying "Sit down, relax." "No,no don't touch." Another thing she is in to now is endless wardrobe changes. Take this smelly shirt off to put another smelly shirt on. Socks come off and get lost. So more broken record "Why the wardrobe change ? The close you had were fine. " I am in a perpetual state of nagging while she does what she does. Today I am doing an experiment. I am just going to let her go free range without any nagging. She doesn't listen to me when I nag anyway so whats the point ? If she is about to do some real damage I intervene otherwise I am going to let her rampage nag free. I am actually excited to see how this goes. I feel calmer already.

Dio

I found that I had to let go of some control to keep myself sane. It became exhaustive and futile to be a constant "broken record." It didn't help the situation by trying to correct them. Hope your experiment goes well.

Last Dance

From: Last Dance Who knows what works and what doesn't work untill you try it. As long as she is not getting into trouble that will cause her harm or make extra work for you It will keep her occupied and take stress off of you as long as you can ignore it and just let her be. Good Luck and God's Blessings to you. Richard

Caro_Lynne

Good luck Bill. That's what I do with my LO. He takes clothes out of drawers, unmakes the bed, moves things around. I just let him be and go behind him and put everything back. Made my life easier than to repeat things he did not understand nor retain.

harshedbuzz

I had a friend whose mom went through a similar stage.

She bought a new house with a 3-room plus bath suite for mom on the first floor when she moved mom in. She and her husband installed baby gates on both the front and back stairs as well as her husband's office and the laundry/craft room. This gave mom a fair amount of space to wander- kitchen, dining room, foyer and family room plus her own rooms- while limiting the work she created for others. She also limited mom's closets and drawers to about 5 day's worth of outfits which made it easier to tidy up at bedtime.

SDianeL

I'm going through that right now. My DH stage 5 Dementia is rearranging everything in the apartment multiple times a day. He has an obsession about things. Reasoning doesn't help. As someone posted on this forum, you can't reason with someone whose reasoner is broken. I was also nagging constantly which caused arguments, but have now decided to only intervene if he could hurt himself. Otherwise, I go behind him and close doors he left open, open doors he closed that should remain open, find things he put in the wrong place and return them, put things back where I can find them. He hasn't started changing clothes yet and hope he doesn't. Glad you are trying to be calmer. It isn't easy.

Sandias

Reduced stress is always good. I am rooting for you Bill.

Ed1937

Bill, your days just became a tad easier. Congrats!

Just Bill

It was a great morning and a great afternoon. So nice I took a nap. When I woke up all the clean clothes I just washed were all over the kitchen floor near the washer. The whole house looks like a bomb went off. And I lost it. She is asking me what my problem is. I didn't think it was possible to laugh and cry at the same time but I learned today it is. I am calling her doctor first thing in the morning and begging to give her a tranquilizer. This is insane and not sustainable. I can't afford to put her in an MC so I am stuck.

Denise1847

I am so sorry Bill. I sure hope the doctor can give you a script to help with this. My DH does alot of obsessive things but not that bad. I have developed the attitude of "what does it matter if he isn't hurting himself or others",

Ed1937

"I can't afford to put her in an MC". Bill, is it time to consider Medicaid? Please don't let this disease take your health. Medicaid is not instantly approved, so it might be time to get things ironed out for that. If you haven't seen a CELA, you really should.

Just Bill

I couldn't put her in an MC even if I could afford it. I have thought about it and even looked into it, but the thought of dropping her off causes me more pain than anything she does. I was venting today and probably should have not typed that.

Jo C.

Of course you "should" have typed that; those are your feelings and when here, in this special place, no one needs to hide feelings, or pretend or "be nice;" we do not judge and we certainly do understand. The dynamics must be exhausting, frustrating and feel never-ending for you. If you do find a care aide to step in as you had mentioned, that may actually give you somewhat of a break. You have had her under your wing 24/7 for an extremely long time, even taking her to work with you each day. I assumed it must be your company since there is a machine shop and she has been permitted to be on the premises. That is a LOT of work, care and attention that you have had to provide for so long without any breathing space.

NOTE: Since you are going to call her physician, why not ask him/her for an order for a urine culture to rule out one of those "silent" UTIs. Those asymptomic UTIs are so often responsible for ramping up negative behavioral issues and it can be quite dramatic. Best to rule that out with a culture - dipsticks have too high an error rate for accuracy.

I understand your not wanting to admit your wife to a MC facility; however, at this stage of the journey, it is in all probability best if you begin to even screen different facilities for a "just in case" situation. Should you become ill, injured or other unforeseen situation occur and she would need care for a period of time, it would be best to know what facility setting is most acceptable to you so that you do not have to leave it up to chance or to have yourself or a designated person running hither and thither under time constraints and pressure and you may not even be able to do that if some "unforeseen" issue happens that takes you out of that capability.

As for Medicaid; I do not know your state. It may be that she would qualify and you would be able to save considerable assets and income for yourself depending on the state. However, it is also understandable if you know she would not qualify for Medicaid and you are striving to preserve what assets you have for the future. That is a huge issue for many on this site.

As it is, if a UTI is not at fault, it appears this ongoing set of changes will not be sustainable going into the future and some adjustment(s) will be necessary. I so hope that you will be able to find and have a care aide come in to assist soon since your wife can no longer go with you to work; impossible to be in two places at the same time.

I also hope that you will be able to think more about yourself and keep your head above water with all of this without a stress induced illness; sometimes we forget about our own needs and health. Hang on and let us know how you are doing; we are here and remember; we truly and really do care.

J.

M1

Bill, I'm sorry the experiment didn't go well at the end. Let us know how your search for help goes. You need a break.

White Crane

Bill, I’m so sorry the experiment didn’t go well. I’m praying you can find an aid to come in and help you. And please call her doctor. There may be some medication that can help. Thinking of you and sending hugs.

Brenda

ButterflyWings

JustBill - It was worth a try. And it did work out, until it didn't anymore. I can't nap unless my DH does, even now that we are in 6E when he is much more chill. I remember those exhausting days of turning things completely upside down. Tornado or bomb is right. My mom used to say, "this place looks like the wreck of the Hesperus". That was really a frantic-feeling time for us (or me I guess).

Whenever DH napped or ate, I spent a lot of time grabbing and hiding as much as possible, to minimize how much havoc my DH's rummaging could do. Just speed-packing it away. I learned early that getting him to "help" to keep him occupied or try doing an activity like that together would not work. If I would start cleaning, sorting, filing, or packing up he would be off to another room to do something else, and I'd have to stop what I was doing to keep up with his shenanigans. But yes, I definitely went with the strategy of putting as much as possible out of his reach and eyesight to reduce the temptation. It helped. That way, he could only access just so much. Less to re-wash, fish out of the clogged toilet, find by accident in the wrong drawer, cabinet, trash, or other nook. And I had to lock some things up at that point, like cleaners and chemicals, etc. Can you pack up or lock some things away where she can't get to them?

But between him rearranging or otherwise stashing things in the oddest places -- and my trying to rehome important things for safe-keeping, not to mention all the unimportant but maybe sentimental "extra" stuff we have acquired through the decades... it was a full-time job then, as you know. And I now have the job of trying to find the things that I really need, with no order to how or where they were hidden away at the time. A key document may be gone for good as he definitely pitched things as one point during his "organizing and cleaning" phase. I guess those instincts still arise for our LOs for a long time, yet there is no rhyme or reason anymore.

I used to go behind him like the re-set shadow-superhero like Caro_Lynne said. There is just so much (semi-)orderly (kind of) disorder after 5 years of this hiding all but a few of the clothes, shoes, papers, supplies and just "stuff" that we had acquired when both had to stop working suddenly due to AD. Him because the Dr said stop like yesterday, and me because they said, "watch him". If not for the constant supervision and intervention required for this wanderer, I would have maybe been able to pack things up and donate or whatever in an orderly fashion, but there was no order to be had in our Alz adventures so far. I am sorry your pleasant day ended with clean laundry and everything everywhere. Some days you can't win for losing. But you tried, and that is awesome.

Jo C.

Bill, you may already know this, but just in case: If you need to collect urine for a culture, it would probably be best to ask the lab for a plastic disposable "collection hat" and of course, a sterile container. There are no fees for this.

The "hat" fits inside the toilet and catches the urine which can then be poured into the container for taking to the lab.

I kept extra hats and extra sterile containers for future needs so I did not have to go the lab each time to obtain the items.

J.

M1

Wreck of the Hesperus--that was one of my dad's favorite sayings BW, and he knew the poem by heart. Longfellow, I think.

Davegrant

This post is describing my life to a T. My dw handled the inside stuff all our lives. She still roams the house continually rearranging things as she wants. I follow behind and try to maintain some order. I often find her missing lip stick in the refrigerator or earing wrapped in a napkin in old cups. I have gradually assumed all of the duties. I baked a cake yesterday and decided to put on the frosting today which is my birthday. My wife said she saw a piece in the corner that was detached so she sampled it. This morning I went to put on the frosting and one half of the cake was gone and the remainder cut into bite size pieces. I admit that I did expect that she would cut herself a piece in the overnight but not eat one half of the cake. LOL I am taking to heart all the above suggestions. I and my daughter did visit a memory care facility last week and again I realized how not alone I am. I understand that I have to make the call on placement but don't think I could today but who knows what the future will bring. As caregiver I am learning to plan ahead.

Jo C.

It's called, "Having a Plan B," in one's pocket which is always a good thing. So sorry about your birthday cake, Dave; but it had me smiling. Happy, Happy Birthday to you!

Just Bill

Today is a brand new day. I have a new term to use "Wreck of the Hesperus". Plus I got a giggle out of it. I hired a girl that is going to start next week. She is going to come from 8-2 Monday and Friday. I am counting the minutes until 9 when I can call her Dr. to see about a tranquilizer. When she wakes up she is semi lucid for about a half hour and she is most like her old self. I enjoyed that half hour and now the Hesperus wrecker is off doing her thing. About an hour before she goes to sleep I get another one of those half hours of calm to look forward to. Today: 1) workout/meditate/breathing exercises. 2) work on letting go of control. 3) child proof the house a little better 4) perform some tasks that I have been procrastinating. All these things help me keep my head on straight. Thank you all for concern, fellowship, and comments.

M1

Bill, this behavior continues into MC too--every time I visit I am putting things to rights. I'll find her glasses wrapped in a blue glove in her art box, a bra in her bedside table drawer. there's always a hunt for something--yesterday it was the cord for her music player (turned up in the art box, yep). I had taken some extra bars of soap and they are all opened up and wrapped in Kleenex. The advantage is that there's only one room and fewer possessions she can do this with, not a whole house worth (and missing the dangerous items like knives, scissors, important papers). She's not a wanderer, and does not go into other people's rooms (some come into hers, which she doesn't like at all).

You and Dave and all others who are continuing to do home care have my admiration and my sympathy. But: having been forced into it by threats of aggression, and even after a horrible first year in MC, I would tell you it is not the end of the world.

Just Bill

Social workers took my wife from her parents at 5 and she grew up in foster care. She has a deep fear of being abandoned. So for her it would be a traumatic experience. It would cause me more pain to do that than just deal with her. At this point I know I am just trading one pain for another so the challenge for me is to make friends with the pain I have chosen and just learn to deal with it. I have already looked into the MC's around here. There are actually quite a few. According to the paper we (L.A. / Orange County) have the highest population of people with dementia. It is a booming business here. I am not saying I wouldn't do it but as long as the pain of dropping her off is more than the pain of keeping her home that is my choice. If she came at me with a knife I am sure I would make the same decision you have. From some of the other horror stories that make my story seem tame, where the decision was made to place and they placed I would have too. I am luckier than most I have read about in this group. She is mostly sweet and cooperative. She isn't violent. She is just losing her mind and this is the latest manifestation.

Jo C.

What a sad and heartfelt story; it is easy to see why and how you are dedicated to ensure she would not feel abandoned.

Does your wife have a dementia specialist? I wonder; if she does have one, if the specialist would not suggest a better choice of med to help her that would work. Perhaps one more specifically for the dynamics she is presenting, and also more effective on a consistent basis than a tranquilizer would be and which also may not quite give the desired results..

Here's hoping . . . .

Caro_Lynne

Bill, I understand how you feel and echo JoC's sentiments and suggestion.

My LO is my ex-partner; we've been in each other's lives for over 25 years and decided (years prior to his stroke) that we do better as "besties" who live together. He has no other family other than a brother with ALZ. I cannot abandon him no when he needs me the most.

Your DW is fortunate to have you and we are lucky to have this forum to be able to share and comfort each other.

Denise1847

Happy Birthday Just Bill

M1

I get it Bill. Bless you for being so sensitive to her feelings.

Happy birthday Dave, btw.

Jo C.

Did you get the prescription, and if so, how is your dear wife doing with it? Any difference in her behaviors ?

By the way; I too am in the L.A./Orange County area.

J.

Ed1937

Bill, I'm sorry to hear about her past, and it's understandable that you don't want her to feel abandoned. She is lucky to have you to do what you can for her.

Howaboutnow

JustBill, I understand where you are. I too get semi-excited to try a new approach in hopes of managing my LO mood/behavior and my sanity. I fail often.

I think about how it would feel to not live like this anymore, and then i think of the pain of what it would mean to get there and that pain seems stronger than the relief of this. So we keep on.

We’re all in this together. PS when people “vent” here, I’m thankful. Most days i feel like reality and any semblance of “normal” life has shattered into a million pieces. Reading that others are in this absurd world…all going in the same direction albeit on different, yet similar, paths is comforting.

annie51

I agree with Howaboutnow - there is comfort in reading the feelings of others that echo my own and that everyone manages to cope somehow. My new motto is "one day at a time".