It's a frikin epidemic

Tuesday, November 29, 2005
Well I think the jet lag has finally started to go away. No matter what I do, I’m waking up at midnight. But at least now I’m getting back to sleep.

So, everyone I talk with back here inquires how my vacation was. I gently (or I think it’s gently) let them know that I was clearing out my folks house, that they are now in assisted living as we’re pretty sure Mom is mid-stage Alzheimers and Dad was no longer able to keep up with the house, finances, food & clothing all by himself. Then almost everyone shares a story of Alzheimers in their family, or someone close. I had no idea this was so widespread, and growing. From the research I’ve done on-line, there are lots of people studying it but no definitive statements as to cause or prevention. Certainly no hope of cure.

Mom seems to fade in & out. There are times when she’s right there with you, and then on the next interaction – the phone rings, or you ask her something, or she turns her head & catches sight of something – she’s gone again. I had the folks over to their old house a couple times. The second time, Dad had a list of things he wanted to gather. We picked out some books from the living room bookshelves. Mom would read a title – or try to, and then she’s reach for a book – which she could not lift from the shelves. Granted, the ones she reached for were larger, coffee-table size books but her weakness is very troublesome. At one point, Mom & I ended up in the guest bedroom, which was pretty much cleared except for several antique quilts. She recognized them, saying her grandmother had probably made them. We unfolded one to look, and I refolded it. She glanced at the next one, then back to the first saying “Oh, I think my grandmother made this” and unfolded it again. And again. And again. It was like being in some bad science fiction movie but it was real and it was my mother.

One of the processes that is very broken is her ability to reason. For example, my brother John was there over the weekend. When he arrived on Friday, she was still in bed at 12:30. She was too cold to get up. (I think she’s down to about 8% body fat.) She hadn’t eaten anything yet either. So John said, let’s get you dressed in warm clothes” pointing to the warm things in her room. Her reply was “I don’t know whose clothes those are.” She knew she was in her bed, in her room and there normally would be a bridge to ‘therefore these must be my clothes’ but there isn’t.

I have not seen that she’s aware there’s something wrong. She doesn’t question why they moved, nor why people correct her a lot. We are trying not to do this too much, but it’s hard when she says “I don’t have any clothes” or “I don’t have any jewelry” or “I don’t have any money”. We all try to be moderately cheerful and say “O, look at your closet full of beautiful clothing” or “Here’s your jewelry” and show it to her.

I had only noticed one time during the visit that she was aware that we thought there’s something wrong with her. It was a paranoid, bitching, “why are you all conspiring against me” kind of day. But we dealt with it head on. She fought hard for an hour or so, but we kept being straight with her and not getting too mad in return. It wore her down and after her nap she was fine & cheery again. John said that during his visit she was pretty upset when she asked “Who’s is this?” referring to the CD player from their house, that Greg had gotten over to their place and hooked up. When John said “It’s yours, from your old house” she burst into tears. He thinks it’s because she then thought she should have recognized it.

Mom also told John that she'd like to visit the house, because she hasn't been back. I'll bet she doesn't remember that I was there visiting a couple weks ago.

Her primary care physician (PCP) isn’t helping. Mom had an appointment a couple weeks ago and the PCP put her on an additional, diuretic blood pressure med. There isn’t a spare ounce of water in this woman. Result was, coupla days after Mom started taking the additional drug, she passed out. Fortunately, she was with Dad in his doctor’s waiting room at the time. She’s no longer on that drug. We still don’t have a diagnosis for her, although she has started seeing a specialist at the local, highly rated memory disorders clinic. Her first appointment was during my visit, and the doc saw her alone, only calling Dad in for the last 15 minutes. We don’t yet know the findings, or even the process for this but Mom was scheduled to have an MRI today (I hope dad got her to go) and from what I’ve read, the evaluation + MRI are done to eliminate possible causes of dementia. If it’s nothing else, then it’s Alzheimers. And even that doesn’t tell you too much.

And, last week, Dad called Greg very quietly, muffled in a pillow to say that Mom didn’t recognize him. I tell people this & they say “Oh yes, my father | mother | father-in-law | etc. called the police on their spouse | kids saying there were strangers in the house.”

It’s a frikin epidemic.

Hopeful sidebar: There is some interesting research being done with respect to vitamins, like in this article from the BBC:
Folic acid cuts dementia risk

Eating plenty of folic acid - found in oranges, lemons and green vegetables - can halve the risk of Alzheimer's disease, a study has suggested.

US National Institute on Aging experts monitored diets over seven years. They found adults who ate the daily recommended allowance of folates (B vitamin nutrients) had a reduced risk of the disease.

UK researchers said the study added weight to previous suggestions folates could reduce Alzheimer's risk. … there’s more on the link.

And I’m also interested in vitamin D. In medical work done before I left the states, I was found to be waaay low on vitamin D. I always crave to be outside in the sunshine, and found myself with seasonal affective disorder – at least that’s what I interpreted the not wanting to get out of bed on the dark, gloomy days was! Discover Magazine had a recent story on nutrition, and the sidebar on vitamin D said, in part: “Vitamin D is unusual in that we don’t get it from our food: We synthesize it by being out in the sun. But our whole cultural evolution has been to remove us from sunlight. … We realized that vitamin D deficiency was a problem 50 or 60 years ago, when children living in cities in the northern United States began to develop rickets. In response, a major public health program began adding vitamin D to milk. And that was pretty effective; it almost eliminated rickets from the United States. Now, cases of rickets are reemerging. Children’s Hospital in Oakland is seeing frequent incidences. The recommended daily allowance for vitamin D is 400 international units—about what you get in a glass of milk. If you’re outside on a sunny day, though, you make almost 20,000 IUs. Four hundred is a drop in the bucket. It’s enough to prevent rickets, but that’s about it. Low vitamin D levels increase the risk of certain cancers, possibly multiple sclerosis as well, and possibly other conditions like asthma.” Walter Willett, professor of epidemiology and nutrition at the Harvard School of Public Health.

So I’m happy that I moved from the northeast to California. It’s not nearly as sunny here in Munich, though. But the extra vitamin D that I’m taking seems to be helping.

Back in Germany

I’m back in Munich, got in eary Sunday morning. The flight back to Germany was great- it was only a little over 6 hours, from Boston to Frankfurt. But the transfer in the Frankfurt airport – yeech! The airport is huge and is different from any airport I’ve been in yet. We all piled off the plane into what looked like a regular departure gate area, but walked and walked and then finally came to passport control. I had to transfer to another terminal, to get the final quick flight to Munich. Much more walking, and at one point I passed a security area where people were just streaming in. Seemed odd to me, at 5:30 a.m. on a Sunday.

I followed the signs to my terminal around the corner and the mystery was solved – this was re-screening for everyone off an international flight, connecting to another flight. That line took 30 minutes, easily. Then the walk to my terminal took another 15 minutes. I got to the gate early, so I sat & watched news on TV. About 15 minutes before my flight was supposed to board, there was still no activity. I checked at the counter, and the gate had moved, from A4 to A28. Well, I needed the exercise so all the walking actually felt OK, Would have been better if I was not carrying so much.

Got to that gate, and there were lots of passengers milling around, and the sign said “Munich”. (Well, it said ‘Munchen’ but I knew what it meant.) But I heard someone ask about the flight and the woman working the counter said it had moved gates. I stepped up and asked, and she said that the gate had moved, to A30 and this gate was now the flight to Marseilles. But they don’t have any way to change what the sign says.

Talk about the system running the people! And they didn’t have any hand-done signs up, weren’t making any announcements. In addition to this problem, in this airport there are few Arrival/Destination screens, so it takes a lot of walking to find out any information. I was looking for toilets and kept walking & walking & seeing no signs. I was thinking, this can’t be right, there have to be toilets somewhere. And they are everywhere, once you know where to look! Each departure lounge has a small toilet off to the side, so there are no overhead signs.

So, either make sure you have lots of time to transfer in Frankfurt or avoid it.

I am still feeling unreal & not quite here. The fact that it’s snowing outside does not help this one bit. I have not lived in snow for 18 years. I did buy a winter coat while visiting Maggie, figured that the things they were selling in the Boston area would work for here too.

I have many more thoughts about the work in Rochester, clearing out my folks house. More later, if I manage to stay awake.

Finishing up for this trip

Well, I have run out of time in Rochester. Have made a good start on clearing out the obvious in the folks house, with the huge exception of Dad's workshop area, gardening area and his work papers, minerals & fossils. The problem now is there's still an awful lot left that the folks won't need (like 3 sets of old china of no particular value, I checked on eBay); their memorabilia; their parents memorabilia, etc. and that is still a big pile of stuff. Now, where to put it?

It will probably wait for a while until I get back; Greg & Andrea can only get to a little bit at a time, between all that they do. They have been doing the day to day running to get things the folks need, managing the bills, sorting out the finances. I may need to get back here soon to help out some more.

Other than the work, it's been a lovely visit. We've had some great dinners, I've played in the yard with Gavin, board games with Gavin, and took him to the movies. I have enjoyed being here & helping out.

Now, on to Boston for a couple days to visit my best friend Maggie. Then back to Munich.

It's not "Too Good" to use

Another edition about stuff - if it’s in your house, it’s not “too good” to use! I have been finding a few things still in their original packaging - placemat sets, cute little soap dish with rosebud soaps, etc. They were deemed “too good” to use. And now they’re getting sent off to the Salvation Army. Not what their giver or purchaser intended. So, if you have anything like that lurking, splurge! Use it!

Made more progress yesterday, I took the folks to the optician to get Mom new glasses. Then we went to their house and gathered some things. Made some real finds, things Dad has been looking for “for years”. He also dug up 3 Gingko trees, very small, and I potted them. Then I made him go through a pile of clothes of his. He’s just not interested in that kind of stuff. (Never has been.) We ended the day out for lunch. Gotta go to a place that has soup. The place they’ve moved to offers soup at lunch & dinner, and Mom has become accustomed to that as a choice. I think there’s a Seinfeld routine in that, eating dinner at 4:30 and must have soup.

Also made more progress on their finances. Found out that there was NO beneficiary designation on one of Dad’s accounts, we’ll work to remedy that. Found out how to get permission to revise the investment options in one of Mom’s accounts; there’s a big automatic distribution that does not have to be so big, and it’s just been rolling into her savings account earning hardly anything. So we’ll fix that over the next month so that account will grow, instead.

All in all, it was a good day.

With renewed energy I am off to their house today to attack some of the junk and sort through some more of their household things - there’s lots of bedding left in the house and they could use another spare set at their apartment. And, it’s Garbage Eve at their house so I can bag up a lot of stuff and leave it at the curb.

The fun hasn't stopped

Second week in Rochester. I got the load of clothes out of the folks house on Friday, and to the Salvation Army with Andrea's help. 17 large garbage bags of stuff. And there’s a bit more clothing to come.

Went over to visit with the folks on Saturday, and drop off some of the things from their house, that they can use. (They still had not put away the things I dropped off on Monday. So I think it’s time to stop bringing them things. We’ll put things in their storage unit and swap them out as necessary.)

Sunday, we spent some time trying to understand their finances, we think we have a good handle on that now. Greg & Andrea have been sorting through it all, Dad was in process of transferring from one bank to another when he had his stroke, so that has taken a while to resolve. G&A have been paying the bills, taking checks over for Dad to sign. They had a great start at understanding everything and getting access to some accounts.

Now there’s a list of things to do at the bank - getting access to all the accounts. Simplifying by combining a couple of accounts. And perhaps moving some money from savings to an account that makes them more income. So working that is on my plate for this week, plus working more at the house. I started finding things that should be kept or sold, instead of donated. And there is still a tremendous amount of junk to be discarded. 50 years worth of vases and baskets from flower arrangements, carefully stored and in great condition. But junk. And saved jars, and a huge amount of pots & pans. And I have still not even looked at Dad’s area in the basement. Full basement, his workbench area has grown to take a quarter of it. Piled with stuff.

Today I am picking the folks up and taking them to the optician, Mom is getting new glasses. Afterwards, Dad wants to go to the house and - here’s the big important thing - dig up 3 Gingko trees (twigs, actually) and get them in pots to take over to their apartment. I really really want to vent at them for all the crap that we’re wading through in the house, but that would not serve any good purpose. Hence, the blog!

And, Ellen wrote in an addition to my last entry, that I heartily echo - people, please get your photos in albums and label them as to place, date and who the heck these people are! I have found wads of pictures that I believe my Mom got when her Mom died in the early 80s. I don’t know who the people are, why we have their picture, where or when they were taken. So postpone the ironing or the lawn mowing and work a bit on what’s important - the family history and memories.

Embedded in Rochester

I’ve been in Rochester about a week now. The flight was good - I am liking Lufthansa quite a bit. I flew into Boston, then took a United commuter flight from there, actually flown by US Airways. And my checked luggage made it! Everything was on time.

I have visited with my folks 3 times; I head over to their apartment around 11 and we stroll to the dining room and get lunch. The place, Woodland Village at Park Ridge, is pretty nice. Their apartment is big and hold most of their furniture from their house. The food is good and all the staff I have met so far are cheerful and patient. Which is good, because many other people in the place are in about the same state as Mom - short term memory shot. She sets something down and then doesn’t recognize it; she asks the same question 3 or 4 times during the course of lunch.

Dad is doing OK, getting around with his walker. He’s been making lists of things to bring over from their house. He does OK with Mom, keeping her reoriented and answering the same question several times in an hour, keeping track of the various doctor appointments, and the items Mom says she needs. I think it is quite a load on him, but he’s not asking for help. They’ve been at Woodland a couple months now and he seems to be settling in. I have retrieved some of the things he needs, and have been starting to do a deep sort and discovery at their house.

A plea - people, clean out your houses! Have integrity - if you haven’t fixed that thing or done that craft in the 10 or 20 or 30 years since you started, pass it on to someone else! If the clothes don’t fit you, pass them on! If you have kept 30 empty glass jars from the applesauce, etc. and have only ever used 2 to save something in, get rid of the other 28! And please, please don’t make your kids clean out your house.

I am cycling through such emotions as I work at the house. I’m clearing out clothes that Mom hasn’t worn in 20 years - lovingly ironed, pinned in place in a hanger that she padded by wrapping with plastic bags. I’m angry that so much effort was spent on clothing, sad because she must have entertained hopes of wearing the nice clothes again, upset that the house chores seemed to keep them both bound to the house - they never really traveled, even after the kids left. The time & effort they spent on that house - all non-work time seemed to be dedicated to raking, mowing, weeding, planting, washing, ironing, cleaning, painting, modifying. And they weren’t big on making it any easier for them, ever. Us kids have escaped that, probably as a reaction against how much work they did, repetitively. I have not lived in a house with a big lawn since 1987. Haven’t ironed more than quarterly in decades. (This may be different in Germany, as the dryer doesn’t seem quite so ‘permanent-press’ friendly). Have a clothes dryer & dishwasher. My brothers similarly make it easier on themselves as they can.

I had thought that there wouldn’t be quite so much to do in my folks house, as in Logan’s Mom’s house last year, when we moved her to a smaller, single story house. Well, I think I was wrong. I have gotten to half of the scary attic place - where there isn’t a floor but just boards on rafters (I hope to not fall through the ceiling of the room below) - but I glimpsed the stash in the finished part of that attic yesterday. Full full full. So I will go over there today and work on getting all that hauled out into the main room, which thankfully is cleared of furniture, as it all went to their apartment. We will be making a Goodwill run soon, with all the clothes that are impossibly too big for Mom. (She’s probably a size 6 now, and had clothes up to a size 16. I found some size 14 pants with notes on them ‘Adjust waistband’. Nope, they go OUT - she puts on something that big and it swims on her & upsets her. The same for lovely tops with fiddly tiny little buttons - out they go.)

If you have kids, when your kids leave the house, make them take all their crap with them or threaten to throw it out yourselves. And then do it. I dunno what to do with some of the stuff I’m finding, it has memories for me but in this moment it’s hard to let it go. Would have been much easier 20 years ago. I’m setting aside things for Greg & John to go through. The folks apartment is spacious, but we cannot clutter it up with stuff. That just confuses Mom and makes it harder for them to get to the stuff they do need.

Dad kept fewer clothes, so his closet is much easier to deal with. I bought him a long-sleeved polo shirt and took it over on Monday as a test, he promptly put it on and it looks great on him. No fiddly little buttons there either, so we will be getting him more of these. And then I think, why couldn’t he think to look for something different to wear as his tremula increased, making it darn near impossible for him to button a shirt? It’s a thing with them, not living in a universe where they can seek out help/better/different outside of themselves and what they’ve always known. It has been hard for them to get used to using the driving service at the Woodlands. When I first visited, Mom said she was out of lipstick. So, Mom, I said, reserve the driver and have the car take you to the store. “I can’t do that.” she said. Well, yes, it’s what it’s there for. “No, I can’t do that - please mister take me to the store.” (the last said in a pitiable, begging tone.) I told her that she needs to use the service because Dad should not be driving. That threw her for a loop.

Dad driving - be afraid, be very afraid. His reaction time to anything is very very slow. He has been taking a driver’s assessment class & tests, the first part was written and the second will be an actual driving experience. I am hoping that that pierces his veil of self-deception. He thinks he’s fine behind the wheel. He’s got a lot of this city in muscle memory. But if anything has changed, or anything happens fast, he won’t react to it fast enough, I fear. But, he has been moving so slowly on everything that he may just give up on getting his car.

Time to breakfast and get over to my day of emotional roller coaster, dusty hard work. Whoo hoo!