update

I'm not posting much, but what posting I am doing is now back on my original blog at: http://deeplanguage.blogspot.com/

A Poem

By my cousin Patti Carey, struggling with cancer in her 30s:

Let It Go

Let go of the ways you thought life would unfold;
The holding of plans or dreams or expectations –Let it all go.
Save your strength to swim with the tide.
The choice to fight what is here before you now.
Will only result in struggle, fear and desperate attempts to flee
From the very energy you long for. Let it go.

Let it all go and flow with the GRACE
that washed through your days
whether you receive it gently
or with all your quills raised to defend against invaders.
Take this on faith: The mind may never find the explanations that it seeks,
but you will move forward nonetheless.

Let go, and the wave’s crest
will carry you to unknown shores,beyond your wildest dreams or destinations.
Let it all go and find the place of rest
and peace, and certain
transformation.

Two years

It is about two years now since we realized John had Parkinson's disease. He was diagnosed as soon as we saw his family practitioner and sent to a neurologist and then to the Movement Disorder Specialist who said Lewy Body Dementia.

John is doing better than I had expected. Our son, who isn't very observant, said he thought John hadn't changed significantly in those two years. The changes I see are that John is slower and gets confused more easily. But he is still taking care of himself except for wanting help putting on his socks and he still doesn't have hallucinations. He did a driving evaluation with the occupational therapist at the rehab hospital and passed. I think our new renovated house has improved our lives--he can deal with his sleep issues by watching tv or listening to books on tape in bed or sleep on his back and snore. We have a caregiver/cleaning person twice a week who does her best to keep his chaos under control. I'm happier anyway now that I have my own peaceful space.

He is in somewhat more denial about the cognitive issues, but he admitted recently he can't handle financial matters and the like when he asked for my help with a situation where he has been dropping the ball for years--serving as executor of the estate for some people who were important to him when he was young. I thought he had withdrawn a year or so ago but it turns out he didn't. I will play the illness card on that one--tell them he has early dementia and doesn't like to admit it. We also have arranged for an accountant to help aunt Florence with her finances so she doesn't keep asking John for help.

John and I talked a little about how he is doing better than I expected after two years. He wondered how much of it is due to his taking coconut oil and MCT oil? No way of knowing. He does have impaired glucose tolerance, so if some dementia is a kind of diabetes in the brain he is likely to be in that group. And that is what the oils are supposed to address by providing ketones as an alternative fuel for the brain.

We saw John's neurologist yesterday and the doctor was pleased with John's muscle tone. John is working with a better physical therapist and she has even motivated him to do some exercising on his own. He has even gone out for a walk a couple of times in the last few weeks. I just wish he didn't have such a tendency to decide to go for a walk or to go see his aunt Florence at dinner time.

fairly stable

We are now pretty well settled in the renovated house. We have a woman who comes twice a week and cleans, does John's laundry, and straightens up his area. He doesn't like it when she tries to organize his things but he doesn't get around to doing it himself. I tried to suggest that when he can't do things himself he needs to accept someone else doing it not exactly his way, but he doesn't buy that.

He will let her help him with some things like putting on his socks. I tried to push him that he needs to shower more than once a week but his answer was that putting on his socks was too difficult. Sigh.

Today he went out for a walk for the first time in months and called me to come get him because he had been too ambitious (he went nearly two miles). It would be good new if he would get back to exercising. He has a physical therapist he likes and now goes there twice a week. Maybe she has finally found the trick to get him to make the effort to exercise.

He did a driving evaluation with an occupational therapist at the rehab hospital and he passed. It worries me that he came home exhausted by the effort because he had to change his usual habits for the evaluation (for example staying under the speed limit). But so long as he has no hallucinations and does this three hour driving evaluation once a year I won't fight it. Despite how slow he has become his reaction time tested as good.

I miss having someone to share the work

Yesterday I went with John to the urologist, who again recommended more surgery for his benign prostate enlargement (or the scar tissue from the first surgery). They did say they could do it without general anaesthesia. John wants to try a dilation procedure first, but if that doesn't last very long he wants to find a high-ranked doctor farther away. Sigh.

I'm wishing for help with Christmas. Our daughter and I went and got a tree today and I got it up, but no one has offered to help with decorating it so it isn't decorated. John hasn't been feeling well this afternoon/evening, so I shouldn't complain about today specifically. But more generally, Christmas is too much work to be trying to do mostly on my own. I'm ok with cooking a traditional meal even if I have to do most of the cleaning up too. But even if my daughter will help me some with decorating, having to do the cleaning up makes the decorating seem too hard. I need to think about what I would want in a simpler Christmas.

tired

This week our focus is on moving John's aunt's things out of her assisted living apartment, as she has moved permanently to the nursing home at her retirement community. We have one helper who is very good at sorting through things and making decisions. John is not so good at that but he did arrange several people to pick up things.

I've been trying to set up an alternative for our son, who is in his first semester of college and flunking out. I wanted to make sure he had another choice and doesn't have to stay home and deal with his father's illness unless he chooses to. And today I heard the good news that he is accepted to what was originally his second choice college for the spring. I'm hoping he has had enough time to learn his lesson, but I think a fresh start will be a relief for him.

John was complaining yesterday that I don't tell him things. Actually, I make a pretty good effort to keep him informed. Sometimes he forgets, sometimes I don't tell him because I don't want to spend the time and answer his questions and have him second-guess me, and sometimes I don't tell him because of my resentment that he doesn't share the burdens more. He said he thinks I am angry at him for getting sick. I said I am angry at what has happened to my life but he is just going to have to live with my strengths and weaknesses. I'm good at working things out practically, but I'm sometimes going to be impatient or irritated.

interesting study

This isn't information I need yet, but it is so clear I thought it worth linking:

Clozapine is the only antipsychotic shown to be efficacious for the treatment of PD psychosis, although quetiapine is more frequently used because of convenience. Concerns about antipsychotic sensitivity in DLB patients may prevent antipsychotics from being tested further in this population. There is also preliminary evidence that cholinesterase inhibitors may have antipsychotic properties in both PD with dementia and DLB.

source: "Presentation and Management of Psychosis in Parkinson’s Disease and Dementia With Lewy Bodies," Daniel Weintraub, M.D., and Howard I. Hurtig, M.D. Am J Psychiatry 164:1491-1498, October 2007 http://ajp.psychiatryonline.org/cgi/reprint/164/10/1491

end of my rope

Moving was hell. We had two particularly intense two day periods, when the professional movers came and when some people with pickup trucks helped us finish clearing out the old house. Then I pushed to get as much unpacked as possible before Thanksgiving. I thought things were settling down now, or at least I could focus on my job, but now John's aunt who lives in our town has to move from assisted living to the associated nursing home. Clearing out her crammed apartment is going to be a nightmare.

Right now I need to go check on her. They didn't have a room ready for her in the nursing home until today so I had to arrange round the clock care for her. John was coping with helping her until the bad news came, but then last night he said he couldn't bear to go back.

Not sure of anything

My packing went well Sunday but it was hard today to have to deal with last minute renovation questions and my job as well as getting ready to move. I can't tell whether John is going to be ready to move or not. I suggested he might want to stay in a hotel the night before moving day but he didn't think that would be necessary. I may suggest it more forcefully.

Today he asked me if he needs to cancel physical therapy and massage appointments on moving day. I told him yes. I think moving day is going to be overwhelming for me trying to make sure everything ends up in the right place. I also told John that in the two or three days after we move, the woman who is helping us pack and unpack would put away his clothes and set up his partial kitchen without him if he made other plans in the afternoons.

I got some packing done today I had been avoiding, but now I'm feeling discouraged. The big chunks are getting done but that makes the small scattered things more visible. And the most unreliable person I hire, who was a big help Friday, didn't show up today.

I have people who offer to help, but I don't know what to ask for. I'm thinking I want to organize a picture moving and hanging party for Friday (after the movers move the boxes and furniture next Tuesday). What can I get a 12 year old boy who really wants work to do? Do I want friends to help on moving day or do I need to be able to focus on telling the movers what to do?

more delays

Moving is now delayed until Nov. 10. The third coat of polyurethane goes on the floors today. But I think that date will hold, and maybe even the extra painting of shelves will be done by then. John tells me every now and then that he knows I have put a lot of work into the new house and I have done a wonderful job. My first reaction is that he sounds insincere (our therapist actually agrees) but I am trying to be grateful he is that positive instead of totally dragging his heels. My hope is that 4 or 5 months down the road, when we are settled, he will tell me that I was right, our lives are better in the new house.

house progress

We accepted an offer for our old house today, so that is a huge relief of tension. No major contingencies and closing Nov. 16.


The plan is to move Nov. 2, which is a tight deadline but looks possible.

Here are some pictures:

John's sitting room has a laminate floor and is walk-out to a carport with no step at all.

John's bathroom--the folding grab bar to the right of the toilet is not mounted yet. The toilet seat is a Toto. The wall is blue below the chair rail to make the toilet easier to see.

John's shower:


The controls are outside the shower because the shower head had to be mounted on a cement block wall.

getting close

I had hoped to move this week but the house isn't going to be ready. I'm not sure whether it is going to be ready in time to move next week or not. It is getting close, but the hardwood floors still need to be sanded and refinished, paint touched up, and the grab bars installed in John's bathroom.

John is a little more focused on packing than he was at first but there is still a lot to do. And I spent the afternoon today working in the yard of the new house, not packing. I realized today that we have 5 different people we hire to help us with yard work and packing, all of whom are pretty unreliable. I got upset Sunday when someone who had repeatedly said he was coming didn't show up, but I found someone else to help me get the bushes planted before it got too cold. I'm trying to be more laid back and figure if one person can't help someone else will be able to.

I will post some pictures once the grab bars are up. John's space is going to be really nice.

hope

I had a very sore back Monday and Tuesday from preparing a garden and planting a tree Sunday, but I am much relieved it is much better today.

The roofer came today and did a minor fix that he thinks will stop the leak in our current house.

The plumber pushed down the tree that wouldn't fall and the two dead trees next to it with his backhoe and didn't charge me anything. Another subcontractor said the plumber just wanted to play with his toy.

The refrigerator that seemed not to be working did eventually get cold (it took more than 24 hours). I was too efficient and ended up paying for a service call for a repair person to tell me I should wait longer, but it is still good news.

The renovations on the house we will move to are beginning to get to the last stages. The painting isn't all the way finished yet but most of the plumbing fixtures were put in today and the appliances come tomorrow. The big thing still to be done is laminate floors on the lower level and sanding and polyurethaning hardwood floors on the main level and in the attic (where more oak flooring needs to be added in the new dormer area). The light fixtures should start to go in Friday or Monday.

The realtor says he is hoping to have an offer for us on our current house tomorrow. He doesn't know if it will be a good one, but if that did work out it would be a huge relief of stress. We had an offer earlier in the summer and agreed on a price but it was contingent on those people selling another house that has not sold.

Our kids are coming home for the long weekend and I have Monday off.

John told the therapist that he thinks the antidepressant (Wellbutrin) is helping him. I don't see much difference in his ability to get things done, but he seems to be a little more engaged--now and then he does notice that I have feelings. He started going to a specialized hand therapist and his hand is finally getting better. It will be interesting to see whether he wants me to continue to put on his socks and shampoo his hair as his hand recovers. He doesn't seem to mind being dependent, while I wish he tried harder to do things for himself.

overloaded

I had hoped to move this week but the renovations are not done, so we are currently scheduled to move Oct. 22. So it could be worse, but I need to vent.

I had some landscaping taking care of last week, regrading on both sides of the house so the water flows away from the house and not straight at the driveway. I got beds along the foundation prepared for me at the same time. Saturday the university botanical garden had a plant sale, so I bought a good sized arborvitae (emerald variety), to go near the house between two windows where it looks a bit blank. Then I took John to a funeral of someone he cared about and then went to Atlanta to pick up a chair my daughter and I had ordered.

Yesterday (Sunday) started out with two men coming to move several appliances. I didn't see any need to buy a new washer and dryer and refrigerator, but since there were decent working ones at the new house (from when it was rented to students) I decided to swap now so the refrigerator could be installed along with the new appliances later this week (it needs an icemaker line). The person who was coming to help me clean couldn't come because of an injured foot so I unloaded and cleaned the refrigerator and cleaned behind it and behind the washer and dryer when they moved them. John tried to help a little with the cleaning but he is so slow that his help didn't amount to much. He didn't try to help reload the refrigerator. This morning I had to call the appliance service people--the refrigerator that we moved to our current house isn't cooling properly.

I was left with the job of capping off the icemaker line at the old house, as the refrigerator we moved there doesn't have an icemaker. My first trip to Lowes I came home with a cap that was too big, but John went back and bought a smaller one and that worked.

Meanwhile, I had someone coming to cut down some dead trees. They are cedar trees and the one he started with proved to be hard to cut--he borrowed a splitting maul from me to add to one he was already using to wedge the tree in the right direction. He eventually got it cut but it didn't fall--it is held by vines to two other dead cedars. He was going to come back today with a winch but it is raining.

While he was working on the tree I worked on digging a hole to plant the tree I had bought (ironically also a kind of cedar, but one that grows 12 feet tall and 3 feet wide). The clay soil was the right wetness to dig relatively easily so I dug a really big hole and mixed in composted wood chips and lime and fertilizer. I should have asked for help moving the tree and the 40 pound bag of wood chips, but I had enjoyed doing the digging and doing the whole job right. Not surprisingly my back is sore this morning.

These days I usually move to another bed when John comes to bed and wakes me up with his snoring or crying out or just shifting trying to get himself positioned in bed. So I moved around 4 am last night to my son's room (since he is away at college) and realized the bed was wet because the roof was leaking. I went up and put a bucket in the attic but I didn't get back to sleep. We have been struggling with this roof problem for a couple of years--it was supposedly fixed. I called the realtor who is selling the house and asked him for a recommendation of a really skilled roofer. He said they are either cheap or good and I said I want good.

The good news is that the roof leak in the dormer of the new house does seem to be fixed, though there is still a problem with a downspout backing up. I took my laptop back to the repair place this morning--they supposedly fixed it last week but it isn't fixed.

It is all more than I can bear.

hand problem

We went to the neurologist last week and talked mostly about John's partial loss of use of his good hand, which was supposed to get better (it supposedly resulted from falling asleep in a desk chair and compressing the nerve). It has gotten only a tiny bit better, though I notice the last few days John is doing some things he had said he couldn't do, such as taking out the trash. The neurologist said recovery definitely is slower than it should be, and he was concerned by how the muscles in John's arm have wasted. He wanted John to get electrical stimulation at the physical therapists office first, and if that doesn't work in a couple of weeks he will try a cortisone shot in the elbow.

John's massage therapist is concerned it might have been a mini-stroke. I'm not following that up because I don't think the therapy would be any different and I am not up for a new round of doctors right now.

I'm tired of cutting John's food up for him, and this is only the beginning of the journey of helping him with activities of daily living. Caregiving does not come easily or naturally to me.

getting help

We actually are making progress getting packed to move in a month. Today I found a consignment store that looks like a good place to sell some furniture we don't want. We have two helpers, one a strong student and one a woman who can work more independently, who each come one afternoon a week to help with packing. I'm hoping the woman will help John unpack and then slide into helping him manage his things.

I said something to John yesterday that seemed to get through. I asked him to try to find ways for paid help to do the things he can't do any more, instead of expecting me to do them all. Today he asked the student to clean the inside of the microwave and take out the trash.

I'm here

We had at least one of our kids home all summer but now they are both back at school. My daughter helped me a lot with decisions and shopping for the house renovation (a big help because John shows no interest). I taught both kids to drive (talk about stressful). The house renovations have been intense and are still not done--hopefully by the end of the month. Our current house hasn't sold, though there has been some interest. I've been posting renovation pictures on Facebook and instead of blogging Twitter has been about my speed (what I post there shows up on Facebook too).

John fell asleep at his computer and compressed the nerve in his elbow. The result was that he lost a good part of the use of his better hand. It is supposed to get better, but more than a month later it has improved only a tiny bit. He needs me to change his socks for him and cut up his meat. I wasn't expecting to be here already.

My tentative plan is to move the second week of October. Somehow. I am teaching a full load this fall.

I am grateful that John has been able to continue to take responsibility for helping his 98 year old aunt. She took a bad fall a couple of weeks ago and I met the ambulance at the emergency room, as I knew it would take him too long to get there. But he managed after that. Amazingly, nothing was broken and after a little more than a week at the nursing home she is back in her assisted living apartment.

feeling burdened

I've made plans to give away our cat tomorrow--John doesn't like her around because she demands attention. I'm not strongly attached to her but it is still a sad thing to do. I think I have found a good home, at least, someone who really cares about cats.

We are supposedly on vacation in North Carolina and John still seems to enjoy being here, though his hiking is really slowing down. I went back home yesterday and will go again tomorrow to deal with work and house matters. I'm worried I should be there today to look for anything in the rewiring that isn't the way I want it. I forgot to check yesterday whether they moved a switch I wanted moved--I know they didn't move another one. The good news is that they are hoping to be done today with the rewiring.

Our son missed his plane home from Spain Saturday and I had a hairraising time getting him scheduled for a flight the next day. But he is now home and with us on vacation. Next step is to get the details worked out to take him to start college at the end of the month.

I went to a Lewy Body support group yesterday, though I didn't stay the whole time because I wanted to get back to North Carolina for dinner. Still, I liked the other people and I talked about how confusing it has been for me.

John is home

John went to Spain with our son, who is studying abroad there for a month. They traveled together for a few days and then John went to Madrid alone for several days. Going to the Prado was on his life list. He had an international cell phone, and called me for help with several problems. The biggest one was that he missed his plane back from Madrid to Malaga and could only reschedule for four days later. By then he was ready to come home but Delta said the flights were very full so I persuaded him to go see our son in Ronda instead of spending his days trying to stand by for an earlier flight. He's glad he went but was very glad to be home.

He has terrible sleep patterns and has not been willing to try to change them. In recently months he usually falls asleep and sleeps most of the night in an office chair in front of his computer. Then he goes to bed for a few hours around 7 am. He has a chair that reclines and has a footstool and two different laptops but he likes to use the laptop in the privacy of his downstairs office. Last night he pinched a nerve in his arm and today has only partial use of his left dominant hand. I had to help him get dressed. So I expected that he would be at his worst when he got home from holding it together for a trip but he has ended up even worse.

When he is around me leaving anything hard or complicated for me to deal with, it is hard for me to imagine that he can travel alone. But he can still pull it together when he needs to. And he has lived all his life with making a lot of mistakes because of ADHD and is used to it. I discovered he hadn't put the registration paper in his car when it came in April (though he put the sticker on his license plate). He commented that he had made that mistake before.

Today's last straw was when he reported "we have a big problem," the sewer pipe had backed up into our downstairs bathroom. Guess who cleaned that up.

changes

Yesterday I took John to try out a lift recliner, and he liked it. Now I need to find a medical equipment place that is a preferred provider for our health insurance and see if buying one there (with the insurance paying $300 for the mechanism) actually comes out cheaper than buying one from a furniture store. John isn't on Medicare yet, but I did get a message from someone at our insurance that with a letter from the doctor they will cover it.

I assembled a couple of shelf units for Aunt Florence. She is buying specialized things so as to get every possible bit of storage space in her smaller apartment. She wanted John to assemble them for her and he tried the first one and couldn't manage it and asked for my help. I just wanted to get it done today so that I will have as much flexibility as possible tomorrow.

Tomorrow is my birthday and I am trying to think of something special to do for myself. I cooked an early father's day dinner tonight so I can put myself first tomorrow. It is a big change of mindset for me to do something for myself on my birthday instead of expecting my family to do it for me. It feels like going in the right direction, if only I can figure out what I want to do.