February 23, 2020

Just got back from visiting my mom. She’s getting progressively harder to engage. John and I got there just after lunch, but I fed her some junk food anyway. She’s not very interested in regular food, but she’s always interested in cookies, muffins and banana bread (today’s junk food). One of the caregivers said she’s not eating her food very well. She said mom barely opens her mouth for each bite she feeds her. I’ve noticed that too. Sometimes she’ll willingly take a full bite, but often it’s little bird bites.

John ran the Brea 8K today. His brother went with him. He ran the first mile, but walked the rest of it. He has been quiet today since then, so it clearly wore him out. I’m trying to get him to rest now, so hopefully that’ll give him a boost. He saw the signs around town

I had a great phone chat with my aunt (my mom’s sister) this week. She is so insightful. We talked about DNA testing, the book “The End of Alzheimer’s” and life in general. She is very supportive and encouraging.

February 17, 2020

Today my mom go a new wheelchair. Its fancy! Well for us anyway. It has a high back that leans back with hydraulic controls. And it has foot rests that also double as leg rests so her feet can be elevated while she’s sitting. She also got compression socks. All this is to help prevent her feet and ankles from swelling too much. I sent a photo of the new chair to my brother and sister in law. He said it’s an indicator of her deterioration. And it is.

February 16, 2020

Today is our daughter’s birthday. We’re having a family dinner. John can’t keep that straight.
We ran some errands today. One stop was to pick up the donut birthday cake. John tried to tell the person at the counter a short story about a prior visit to that store. But he stammered and wasn’t really able to say what he wanted to say. He used lots of pronouns and vague terms so I couldn’t really figure out what he was trying to say. I don’t think it had anything to do with that exact store. The person was very kind though.

The most mundane tasks can be challenging. Simple things like returning the cart at the grocery store, or turning off a lamp. This weekend he’s been searching for a book or 2 that he thinks are missing. But he doesn’t know what book is missing. I think he’s confused about a book my sister in law grabbed when she was here the other night. Except the book isn’t ours. It was one we needed to return to her. So instead of realizing the book wasn’t ours, he thinks it’s something that was taken from him and he’s searching to find it. No reassurances from me help pacify him beyond a few minutes.
Right now he’s taking a nap on our bed. Wearing sunglasses.

February 14, 2020

Sweet Danielle. She took John shopping yesterday so he could get me a Valentine’s Day card. He chose a perfect one too. He signed it in an unusual way though. Just his initials. And they were large, and kinda shaky.

Yesterday Danielle and I did a Virtual Dementia Tour. The intent is to get an idea of what it is like to have dementia, especially for the elderly. They give you a few items to wear - plastic insoles in your shoes with raised portions so your feet feel like they have neuropathy, gloves on your hands - one of which is inside out - so you lose dexterity, weird glasses on your eyes so you see like a person with various vision problems, and headphones so you hear distorted and distracting sounds. Then they ask you to enter a room and complete 5 simple tasks. My tasks were clearing a table, matching pairs of socks, putting a belt on pants, putting on a tie, and ... oops I can’t remember the 5th thing! Anyway, it was interesting to struggle with simple tasks and try to remember what I was supposed to do. I got feedback from the guy who was with me - - I said “Shit!” while I was in there! I thought I was quiet! The experience did give me a little better understanding of what life is like for John and my mom. Hopefully that will translate into a little more patience on my part!

 I spent way too much time trying to get an annuity tax form for my mom today. It never came in the mail because they don’t have her new address, which is my address. I had to call when I was with her so she could authorize that I could speak for her. Still, I need to send an updated address form so I don’t have the same problem next year, but it needs to be notarized. That might be difficult because I’m not sure if my mom can still sign her name. Plus it costs money and is a pain. So I’m also trying to figure out where to send a POA that authorizes me to act on her behalf. A couple calls later, I still don’t have an address for that. Now it’s a holiday weekend so I’ll pick up that battle again next week. One of those problems that keeps on giving.

I had my mom sit on a lazy boy chair in her room that’s in the sun. She really likes that. And I brought her new slippers because her ankles and feet are swollen from sitting all the time so her shoes are tight. Her old slippers are MIA apparently. And I fed her a muffin and Thin Mint Girl Scout Cookies with milk.

Meanwhile John keeps washing his hands over and over again. He thinks they’re sticky. I think they’re dry from the weather and the heater, and all the hand washing makes them even dryer, making the problem that much worse. Then he can’t figure out where to dry them because the hand towels are wet from him using them so much. Argh!

February 10, 2020

Lately my mom has been talking about dying. About a week ago I was feeding her dinner and she said “I’m probably going to die tonight.” I said “You’d better hold off for a few days because we’re having your birthday party on Sunday!” Then last weekend she mentioned that she was going to die soon. I almost wonder if she might have a premonition. But she certainly doesn’t seem like she’s at death’s door so I think it’s the dementia talking. Or wishful thinking on her part. Or wishful thinking on my part because I know she’d never want to live like this. And she experiences no joy. On occasion we’ll see a quickly fleeting smile over a joke, especially if it’s a little crass. But she has no lasting interest in anything. Mostly she likes it if I hold her hand. And feed her cookies of course!
John continues to drive me nuts as moves stuff around all over the house. As fast as I put stuff away, he spreads it around again. Then he gets agitated because he can’t find what he’s looking for. I try keep all the important things in the same place so he’ll know where they are, but in a flash he’s moved them and I have to search around the house for them.

The other day he was in the shower, with the water running, and he started squeegeeing the glass shower door. I laughed out loud but was also immediately horrified. I usually have to remind him a few times to squeegee, and even then he usually misses big sections of the glass. But this time he did it on his own .... but since the water was running it didn’t accomplish anything!

Easter Seals is still going very well. John continues to like it there and it keeps him busy. He always comes out smiling. It’s perfect - - except for the crippling cost. I try not to think about that until the bill shows up in the mail.

 Our youngest son Ben is moving with a friend to Texas this week. I know it’ll be a great experience for him, but it’s leaving me with a big hole in my heart. As our kids grow up, the things we worry about change, but we always worry. The worries get bigger, and we lose control. John can’t share those worries with me anymore, so they’re heavier. He doesn’t have any fatherly advice to give, and he can’t help me address the problems that arise. Thankfully I have very good friends who are always willing to help me, but friends can’t possibly fill the void created by John’s cognitive loss. Sometimes I have to purposely pause to remember the presence, the force John once was. For Ben, I don’t think he really remembers that person at all anymore. John’s loss started as Ben entered his teens. Now his dad is someone Ben needs to watch out for, when it should be the other way around.

So both our sons will be living far away, Tim in Japan and now Ben in Texas. Our daughters are close by and they are both very helpful. Jordan drives John to Easter Seals on the mornings when I leave for work before they open. She offers to switch her schedule to help out. She’s in law school so she’s very busy, but she helps whenever I need it. Danielle is my right hand. She helps me make every major decision about John and this disease. She goes to appointments with me, classes, support groups, and communicates with family members when it’s needed. She and her husband run their own business so they have very busy lives, but they both help whenever I need it. Danielle comes over and stays with John some days, taking him on errands with her, going to the movies, working from our house but keeping an eye on him. I’d be lost without her.

January 26, 2020

Today John drove me crazy! He can’t find a watch he always used for running. He’s been charging it faithfully lately, but I don’t see him wearing it very much. He doesn’t go out and run anymore so I’m not sure what he wants to do with it. Anyway, he can’t find the watch and he’s having no problem remembering that he can’t find it! He was very upset about it this morning and was tearing the house apart looking for it. I followed him around trying to put everything away again. And I assured him it would show up in a couple days - when we’ll discover what strange place he put it! In the afternoon we were out running errands so his attention was diverted and he was back to normal. But as soon as we got home, he was back to tearing the house apart looking for the stupid watch! He pulled out all kinds of crap. Even a box of CDs that he spread around the family room. Even a copy of Microsoft Office from 2004! So he finally went to bed and I put all the junk away for a final time. I hope he isn’t back at it tomorrow!

Last Monday was a holiday so it was a 4 day work week. John went to Easter Seals all 4 days and all 4 days went well. So far Easter Seals is a win!

As far as my mom goes, she had her own room for a bit, and then got a new roommate last week. She seems to be a sweet lady. She’s a little thing who is physically able to take care of herself, but of course forgets everything. I also met her daughter and son- in-law and they seem very nice too. So far so good. It seems like it will be a good roommate situation. She even got concerned about my mom the other day because mom was sleeping a long time and not moving. So she went out to the hallway and asked one of the caregivers to check on mom. That was sweet.

January 16, 2020

Yesterday was another good day for John at Easter Seals for day care. So far so good! Today he spent the day at home because I leave for work before Easter Seals opened. We planned that Danielle would stop by and see him, but it turned out Jordan would be home early so that wasn’t needed. I also planned to send John to Easter Seals tomorrow, but Jordan only has 1 class and isn’t working tomorrow like she usually does. So since she’ll be home quite a bit I’m not going to spend $95 on Easter Seals. Monday is a holiday so he’ll probably not go again until Wednesday. I’m relieved that it’s going so well though, but also hesitant because that could change on a dime with Alzheimer’s at the helm.

I read an interesting book a couple months ago about Alzheimer’s called “The Forgetting”. One of the things that really caught my eye was that child benchmarks reverse in Alzheimer’s. For example, a child typically sits at 6 months, walks at 1, is potty trained by 3, dresses themselves around 4, and can select clothing appropriate for the weather or an event between 5-7. Those benchmarks tend to occur in reverse as a person declines. While John can certainly dress himself currently, he doesn’t choose clothes that fit the weather and he can’t figure out what to wear for parties or events like that. That makes me think that he might be like a 6 year old in some ways. It’s sobering to say the least. That was one of the realizations that influenced me to start day care. John presents himself well. He looks typical. He chats with people and at a passing glance appears fine. People think he’s doing better than he is because he compensates for his deficits as much as he can. You have to spend time with him to get a better understanding of where he’s at and what he’s able to understand and do independently.

January 13, 2020

John went to day care at Easter Seals today for the first time. I was so nervous about it. He was worried about what he would do there. He thinks he’s volunteering all day so he was concerned about knowing what to do. I assured him they would help him. Before we left the house I hugged him and we prayed together that the day would go well and he would be comfortable there. So I dropped him off as soon as they unlocked the front door. 2 other people arrived at the same time, 1 of whom came in a taxi. I walked John in the door and he joined right in and seemed good. So I left pretty quickly and got back in the car to drive to work. I choked up and thought about the weird similarities to when I first took our kids to day care. And then I thought about how horribly different it was. I was dropping my lawyer husband off at daycare. Unbelievable.

I expected him to call me often throughout the day, but he didn’t. I thought that was a very good sign. He called me mid afternoon and said his day was going well. He wanted to know when I would be coming to pick him up. I told him 4p. When I arrived there a couple hours later, he was happy. He said he had a good day and the people there were his kind of people - referring to the workers. I thought he might be tired and want to go home, but he has happy to go with me to visit my mom before going home, so that’s what we did.

Meanwhile my mom was moved to a new room and for now has her own room. It’s freshly painted and has new carpet. I need to get all her pictures hung and move the furniture around a bit, but I feel good about her new room. She’s by the window and will get some afternoon sun. I fed her cookies and mini muffins before dinner, then fed her her full dinner too, so that was a success. Then she was anxious to go to her room and get to bed, so I walked her over there and kissed her goodbye while the staff came to get her ready for bed.

Obviously it’s horrible watching both my mom and my husband deal with Alzheimer’s. I fear the future, yet want it to be over with all at the same time. But I believe in God and I have faith that He is in control. I don’t believe life is all about my comfort. I believe there’s purpose to this and I hope this experience is something that I can use in some way to benefit others. I’m hoping God will use this somehow. I’m trying to choose my attitude. I’m trying to make the best of the life we have. I’m trying to do the best for my mom and for John. I’m trying to do what I think they would want in these circumstances. And I’m trying to take care of myself as well. God has sustained us this far. I don’t think He’s going to crap out on us now.

I often wonder what people think of us when we’re out in public. When people overhear me telling John what to do. Or when I give John basic, simple instructions, essentially treating a grown man like a child. Or when I handle complicated issues in life and he just stands there beside me saying nothing. Or when I order for him at a restaurant. So far no one has ever said anything to me, but I notice an odd look now and then.

 While Alzheimer’s is hideous, there are other diseases that are worse. ALS is one. And I know I have it far better than so many others. So I try to focus on making the best of our situation and attack the shit in life one issue at a time.

Today turned out to be a better day than I expected. So it’s a good day.

January 11, 2020

Where to start? My friend suggested I write a blog to keep family and friends informed on our battle with Alzheimer’s Disease. I think it might be cathartic for me, and it might also be a way to keep track of what happened when. Here goes...

So a little background. Both my mom and my husband John have Dementia. I think early signs appeared almost a decade ago, but we didn’t know it at the time. John has Early (or Young) Onset Alzheimer’s Disease, diagnosed at age 59 with an MRI and PT scan. (This technology was only available beginning in 2011.) Early Onset refers to any Alzheimer’s diagnosis before the age of 65. It’s fairly rare, but hits people when they’re still working so it carries some unique problems with it. I think John would have been diagnosed a few years earlier, but because of his age the doctors assume other causes to memory loss. As a result, his memory loss was already significant by the time he was diagnosed.

Because my mom has a pacemaker, she can’t have tests like the ones John had, so diagnosis is made the old fashioned way, based on symptoms. She probably has Alzheimer’s too, but it could be Vascular Dementia, or another type, or more than 1 type as that’s also common. I suspect she may have Vascular Dementia in addition to Alzheimer’s Disease because she’s had some strokes and TIAs. One stroke in particular impacted her ability to walk, as well as limited her peripheral vision.

For my mom, her dementia path has often been one of apathy. She just started to care less and less about things that were always important to her. She didn’t initially seem forgetful, she just seemed more apathetic. The first thing I remember was she lost her sense of smell, and therefore taste. She talked about not knowing if food was too salty, or not salty enough. An ENT Dr found nothing wrong. I wonder if he knew it could be an early sign of dementia. He must have known.

That’s the thing about Dementia - know one likes to talk about it.

Back to my mom. She always gave us classy Christmas decorations or ornaments for Christmas. I remember the last Christmas that she picked out gifts for us. We got these really cheesy animal ornaments. They did reflect who we are in that they coordinated with the types of dogs we have, or something close to it. But they were pretty crappy looking. Totally unlike her.

When we’d come to visit, she’d always prepare things that were our favorites - cherry crunch for my brother, lemon bars for John, stuff like that. I noticed that she did less and less of that. We’d visit for a week but the kitchen cabinets would be pretty empty and we’d need to shop then prepare meals for the week. Before returning home I’d try stuff the freezer with food my parents could heat up easily, trying to help my dad have food prepared for weeks after we’d left.

 I always called my mom each morning while I was driving to work. My parents lived in Grand Junction, CO, while I live in Brea, CA. At some point my dad started doing more and more of the talking, until eventually mom didn’t want to come to the phone at all. So I continued those daily calls with my dad until he died suddenly in early September 2018. I really miss the conversations we’d have. We were full of advice for each other and helped each other solve the dementia problems we were facing. We talked about my kids, my job, my friends, his friends, well, everything. Dad had been pretty healthy for an 83 year old man. His main problem was back pain. But I am convinced that taking care of my mom killed him. The burden of care giving is extreme, like a heavy weight that you are capable of carrying, but the task of carrying it month after month after month is brutal. He called me very early on a Monday morning in late August and said “I think we’ve reached the end of the road”. He meant he was no longer able to take care of my mom. He was having difficulty breathing and thought he needed some time to recover in a rehabilitation type hospital. He had to get care for my mom set up first, and toured a facility in a wheelchair. Interestingly, John and I had just visited 2 weeks early and I nagged him to visit the facility he had in mind. He was willing to drive by, but wasn’t willing to go inside. Now, just a matter of days later, he needed to tour the place and quickly make arrangements for mom to go there. Then Dad called his Dr who told him to call 911. He had congestive heart failure and while he was in the hospital he had 2 strokes.

Meanwhile my brother and I were each driving to CO. As I drove I spoke to dad on the phone and had more trouble understanding him than I had earlier. By the time I arrived my dad’s speech was pretty incoherent. It turns out there was hemorrhaging in dad’s brain, and he died a few days later. We were shocked and devastated that it happened so fast. We had a quick funeral, found important documents, packed up mom, and drove her back to CA with us. She’s been in Memory Care ever since. That’s how I became primarily responsible for my mom. She’s only 4.5 miles from my house, so it’s fairly easy to visit often. I try to get there at least 4 times per week. She loves sweets now, though she didn’t all that much before, so I make sure she always has plenty. I typically ruin her appetite and feed her junk food before dinner. She doesn’t like vegetables any more, so I tease her that she always made me eat my peas at dinner, so she has to eat hers!

Initially she shared a room with Lupe. Lupe was a perfect roommate. She had a gentle, happy spirit. She passed away a few months ago at 99. Their room was due for an upgrade so while that was done my mom was moved in with crazy Angie. That temporary arrangement became semi-permanent. I complained about it off and on, until a week or 2 ago a firmly stated that I was tired of the roommate situation and demanded that my mom be moved immediately. That’s finally happening this Monday. She’ll have her own room until a new roommate is found.

For quite a while mom talked a lot about sex, penises, and started using bad language. She also got aggressive with care givers, even hitting them on occasion. These are things she never did in life so it was weird and very uncomfortable. There’s nothing to do about that but laugh at it. I’ve subsequently learned that part of the brain remains very much in tact as other parts of the brain wither. Dementia is a very strange disease.

 John’s path with dementia has been typical with forgetfulness and general loss of comprehension. He was a Worker’s Compensation Insurance Defense attorney - so he depended on his brain for his job. He worked at SCIF for about 20 years, excelling at his job. He received many company awards, promotions, and accolades. He was a supervising attorney before retirement. I didn’t know it at the time, but he began to struggle at work. I first became aware of problems in 2011. With hindsight, I believe he became increasingly dependent on his assistant as confusion began to set in. I assume that was difficult for her because they always got along well, but she began to complain about him. At some point John’s coworker told him he should contact HR about creating a hostile workplace. If he didn’t, his coworker would do so. So John did, and HR put him on administrative leave. We were blindsided. HR interviewed an odd and incomplete group of employees about John, ignoring at least a few who really knew John well and could have provided a lot of insight. When John was interviewed he was obviously stressed and answered most questions with “I don’t remember.” Clearly, and with hindsight, that was Alzheimer’s. But HR thought he was being an ass. They changed the complaint from a hostile workplace to sexual harassment and fired John with no explanation. John spent a few years fighting SCIF to obtain copies of his records so he could understand exactly what he was accused of. Those records have apparently been “lost”, and John never understood what exactly happened. This situation hurt him deeply. He always prided himself on his honesty, high moral values, and his friendships at SCIF. He has never recovered from the blow. I think that job loss stole much of the limited joy he had left. For his family, however, it meant a forced retirement far earlier than planned. Our financial situation is much less than we anticipated and planned for in retirement. And now our costs are much higher than we ever thought they’d be, at a much younger age. That definitely keeps me awake a lot at night.

John worked for a few other legal offices over the next few years. As time passed it was increasingly harder for him to do his job. I know his work quality suffered. He’d get lost traveling to appearances, lose files, and forget who his clients were. One of his friends kept him employed I’m sure far longer that he probably should have. But once that had to end, John filed for state disability. That ran out a year later, so we filed for permanent disability. The loss of his identity as a lawyer still haunts him. His once stellar reputation and the respect that came with it is gone. He’s forgotten so much, but he still remembers the humiliation of his forced retirement, and the loss of friendship from his days at SCIF.

Last week we had a 5 hour appointment with UCI Mind to be screened for participation in a clinical trial that would track progression of his disease. The trail included people with mild Alzheimer’s Disease. After 3 hours we were informed that John’s MMSE score was 13/30, but needed to be 20/30 to participate in this trial. I was pretty frustrated with the news because I raised that specific concern at the very beginning of the process. During the screening though, we were both interviewed, separately, by a psychologist. It was sobering to discuss John’s limitations in so many areas. Many of the questions focused on the degree of which John could do things independently. The bottom line is there aren’t may things he can do independently. To confront all those situations at one time was like a kick in the gut for me.

 For instance, I’ve started shaving for John. I select his clothes for him. If I don’t, he’ll wear things that aren’t weather appropriate. I’ve started supervising his showers. If I don’t, he sometimes gets out of the shower a minute after he gets in. He doesn’t remember to wash his hair. He’s not sure which clothes are dirty and which ones he brought to the bathroom to wear after he’s done showering. So little by little I take over the things he could do independently a couple weeks before.

Fortunately I have a controlling personality so I assume taking over these kinds of tasks is easier for me than it might be for others.

I’ve been off work for 3 weeks due to the Christmas holiday. Maybe it’s because I’ve been home and with John constantly for 3 weeks. Maybe it’s because John has declined rapidly lately. Maybe it’s both. But I no longer feel comfortable leaving him home alone all day while I’m at work. It’s time for Adult Day Care. I’ve looked into lots of options over the past few months, but I’m going with Easter Seals because they’re close to our home and they’re not horribly expensive. He did a trial run for 3 hours a few days ago. So he’ll start Monday, initially for 3 days per week. Because of my work schedule that’s all that can work so far because the other 2 days I leave for work before Easter Seals opens. He thinks he’s volunteering there, and they’ll play along with that ruse. My hope is that he’ll like it there and that maybe our kids and drive him there when I’m not available. At this point he’s not likely to listen to them when he’s frustrated, so the burden is on me. He’ll listen to me more readily than others. I think he feels safe with me and therefore is a little less frustrated when I tell him what to do. I hope this week with Easter Seals goes better than I fear.

I’ve looked into many different types of services that people say are available to help families struggling with Dementia. So far every service comes at great expense. If you don’t qualify for MediCal, you don’t qualify to receive any financial assistance. I am frustrated that children and adults with disabilities can receive financial help, but nothing is available for Alzheimer’s victims. They lose abilities until they are very similar to adults with mental disabilities, but still nothing is available. As our population ages, more and more people are being diagnosed with Dementia. Medicare doesn’t cover the care associated with Dementia. The only option is Hospice. Once you are ready to accept only palliative care, patients can go on Hospice and receive a little bit of care - nurse checkups, medications, help showering, a hospital bed, diapers, and oxygen. Every bit helps and I’m thankful at least that is available to my mom. John is not ready yet for only palliative care.

I quit letting John drive about a year ago. He’d been in a few minor fender benders, and got lost more and more often. By the time I took away his keys, I merely hung them up on our key rack and he wasn’t even aware the keys were available to him. Then last fall his neurologist specifically stated that John should no longer drive. That was after an exam and a review of an MRI that was done 5 months earlier. The Dr also said he would have to notify the DMV. I don’t know if that ever happened though because we haven’t been contacted by the DMV. John believes he is perfectly capable of driving, but that certainly is not the case. He is still angered that he can’t drive and talks about it fairly often.

I believe that knowledge is power. Over the last few years I’ve attended classes, read books and articles, researched care options, participated in support groups, and looked into everything I can think of to prepare myself to deal with this disease. But fighting the disease is a double edged sword. We try promote brain health to maintain as much quality of life as we can. But any extension of life simply extends the suffering. And extended suffering also includes the bonus of more very expensive care. At this time, there is absolutely nothing available to slow the progression of this disease. Medications are available to treat symptoms, but they do nothing to prevent the inevitable, horrible decline.

About 2 years ago we anticipated taking part in a clinical trial for a medication. The trial required that participants not take the primary Alzheimer’s medication - Aricept. John went off Aricept, but the trial never materialized. Last fall his new neurologist prescribed Aricept again. After a few weeks on the medication, we saw a boost in John’s cognition. He newly understood his disease was fatal and he was obviously upset. He wanted to go to the gym again to get in better shape to fight the disease. So he started walking to the gym while I was at work, but unfortunately was never able to find his way there. He’d call me at work, and I’d use the app “Life 360” to locate him and help him find his way back home. I’d also been planning a trip to NYC for our niece's wedding. He was well aware that I was going, but he would stay at home. Suddenly, a week before the wedding, he thought he was going as well. He was furious with me when he realized I was leaving him home and ranted and raved at me about it for days. Even while I was on the plane traveling to NY, he was trying to call me, furious that I wasn’t answering while the plane was in the air. Because of all the agitation John was experiencing, I called his Dr and asked about taking John off Aricept again. The Dr agreed and after a week or two John returned to his usual self. He lost the boost in cognizance, but was far less agitated, and therefore was happier. And so was I.

I’m neurotic. I like everything in it’s place. And since my life with 2 dementia patients under my care is utterly insane, I need order. I try organize my stuff in an attempt to organize my life as it spins out of my control. So I put everything in it’s place. And John takes everything out. He says he wants to see what’s in the closet, so he takes a whole bunch of stuff out of the closet and spreads it around the room so he can see it. Then I lose my mind! I can’t stand the stuff spread all over the room! If John decides to change his clothes, he might unfold around 15 shirts and lay them out all over the bedroom. And empty his drawer of shorts. And leave clothes everywhere. Then I get to clean it all up. Again and again. And it drives me crazy! I try remind myself that I’ll miss these days, that I’ll miss the days when he was able to do these kinds of things. But it still drives me crazy.