Update on John

John is more unsteady on his feet.  He can still walk from the house to the car, but with two people to keep him upright.  What scared me most though was that he couldn't eat lettuce, had to pull it out of his mouth.  He said it wasn't a swallowing problem but not being able to move it around his mouth to chew it.  But if his tongue muscles are going, the swallowing muscles are too.

Elizabeth and I and John's wine friend David and Deborah King sat around after his birthday dinner (after he went back to the nursing home) and talked about what he soon wasn't going to be able to do.  I encouraged David to move towards having the wine dinners in the small dining room at the Downs; he said sometimes he has been scared John would fall when he was helping him in and out of the car. Elizabeth found a thermostatic control that will work for John's wine refrigerators, instead of his system of adjusting timers as the temperature of the basement changes.  We also talked about the swallowing problems, which David has seen, and that John's drinking fine wine would be over at the point where he has to have thickened liquids.

I brought the first two points up with John over the next several days.  He said that he didn't think a new control system for the refrigerators was needed this year, though he accepted my saying it would make me feel better.  He said David hadn't said anything to him about being uncomfortable about helping him in and out of the car. I didn't discuss thickening liquids--he would just say he isn't having swallowing problems.

Elizabeth and I talked about what might happen while she is away at school. We agreed that he is getting close to the point of losing quality of life and would not go to the hospital and probably not get further antibiotics if the first ones used don't work (no therapeutic escalation). She wants to come home when something happens, and we will try to have the funeral within a week.

It hurt to feel her pain facing such difficult things.  I also feel so torn between my own instinct to come to terms with and plan for the end and John's denial that he is losing quality of life. I find it hard to feel my feelings when I know he would tell me that they aren't accurate.

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.

decluttering

I have such a feeling of satisfaction when I get rid of bags of stuff and when I see spaces neat and organized (even if I am less good at keeping them that way). I don't think John has that feeling of satisfaction at all. Some of that may be new, but I don't think he ever much had it. What is particularly hard for him now, he says, is making decisions. I'm trying to take the approach of only keeping things I love. That works well for furniture and china and kitchen equipment, but I haven't figured out how to apply it to files.

decluttering

Yesterday we met with a woman about decluttering our house. The idea is that she is an expert on how to make it look good so it can be showed and sold (I have some hope--the lake is predicted to come up another three feet in the next week). She was very clear on John's stuff that needs to be cleaned up, and he seems to accept that he needs her help. Some of it was things that I have struggled to get him to clear up for years, such as at least 50 prescription bottles in the kitchen. But she also focused on some things I long ago stopped thinking about, such as the piles of his clean clothes because he washes them but doesn't get them put away. I feel great relief that someone else will be pushing him, not me. I have to admit it is worth the $15 an hour she is charging us. We can get an undergraduate for $8 an hour, but the undergraduates are in no position to tell John what he needs to do. Now I need to get more of my decluttering done so she doesn't have to work with me. I did pack up another 10 boxes of books to give away and I think I have homes for them.

finding meaning

When I'm low I feel discouraged that I'm not getting anywhere in getting to acceptance of my situation. I don't want to just endure, I want to find meaning in it. I find when I am stuck talking to someone different can sometimes help me think in new directions, so I went to talk to the minister of my church today. Something clicked me into trying to make a list of the different ways I could deal with how my life is changing. One of my philosophies of life is that there are always more than two alternatives.

• I could be miserable and just endure and take antidepressants (I really don't want to do it that way)
• I could feel a calling to this new life, to the challenges I face (that is what I want but so far it isn't happening)
• I could be patient and wait for the meaning to gradually develop after I have been doing it for a while (people seem to think that is the most likely, but I'm not patient with it, it feels like just being miserable)
• I could see this as a new stage in life where instead of measuring myself by concrete accomplishments I need to be aware of the more subtle ways in which I make some contribution, some difference in the world.

I see potential in that last one because I've been struggling not to fall into feeling that somehow I'm being punished or taught a lesson by losing so many of my hopes for the future at once (John's illness and the almost-definite dismantling of the program I've spent the last five years building at work).

I'm pretty good at looking for opportunties when things don't go the way I expect; this would be a similar mindset of seeing the more subtle good that comes from what I'm doing. My program may end but the professors who taught in it will take those ideas into other courses. John and I can't do as much as I had hoped but what we do is still a role model to our children.

discouraged

John got some things done today, but only because I went over with him what needed to be done and because he felt pressured by me. I've been feeling discouraged that my idea that he can take responsibility for some things himself (with a little reminding by me) just isn't going to work.

I finally came to more understanding of the situation while talking to my spiritual director this afternoon. This is a stage where John can still do things but needs lots of coaxing and help from me. It is a particularly hard stage for me, because it would be easier just to do many of these things myself. Also, for me helping someone else takes a lot of emotional energy. For example, I have to say aware of whether he does a task I have reminded him of and decide when would be a good time to remind him again or how to try to get him started. This isn't a stage that fits my strengths but it is where we are at--we are not yet to the stage where it is appropriate for me to just take over (which will actually fit my strengths better).

unstable middle ground

I need to find a middle ground between taking everything over and focusing on my own life (letting John take responsibility for himself). The trouble is, the middle ground doesn't feel stable. As soon as a problem comes up I feel I have to drop everything and take over. Or it feels like the only way to let him take responsibility for something is to not care whether the job gets done or not.

I have an image that the middle ground is a ridge with a slippery slope on either side. So I need a way to chisel out steps, flat places where I can have a more stable middle ground. My first thought of how to do that is to make a list of what is my responsibilities and what is John's. We talked about it some over dinner and he agreed with the principle that whether he does exercise and activities that will help preserve his quality of life is his responsibility. So I started a list as a shared Google document.

The New Normal

One of the concepts that struck me at the Well Spouse Association meeting is the idea of a new normal. I didn’t even go to the workshop with that title, but the phrase has stayed with me. I think I’m imagining some stability, and in the long run I’m not going to get that. But I still see some peace in thinking “this is now what’s normal for us.” This isn’t (or isn’t only) a strange and scary place, it is where we live. That’s very similar to the famous meditation for people with children with disabilities called Welcome to Holland. How to be here, in this unexpected place? There were people at the conference who had been well spouses for 20 or 30 years (mostly with spouses with Multiple Sclerosis). Caregiving is a place people live, not just one they visit in a crisis.

How to settle down to living here? I wonder if it is possible to sit down and discuss with John what he can do and what I will do. I will take care of finances and family plans and remind him of those things. I will go to doctor’s appointments with him. When he asks me to, I will take over his bills and organizing his medications. He is responsible for his things and for the day to day matters of his health, such as exercise, and for finding the things to do that make his life worthwhile.

marriage and chronic illness

A post I read on the Wellspouses forum has me thinking. It was from several months ago but if you are in the group you can find it by searching for the subject "How do you define a healthy WS/IS marriage". I don't want to quote it because I haven't asked permission, but the general argument is that when a spouse is temporarily ill we relate to them by making a fuss over them, but that doesn't work for a long-term illness or disability. The author argues that in the situation of a long-term illness or disability the ill person should as much as possible take responsibility for figuring out how to manage their own care, just as they would if they were single. The key suggestion is to avoid taking responsibility for the other person, but instead let them take the consequences of their own decisions as much as they are still capable of making reasonable decisions. That makes me realize I've fallen big time into trying to rescue John (and then resenting that role). And he isn't to the point where that is necessary yet.

different approaches

I spoke with someone at church today whose husband was diagnosed with Parkinson's two years ago. He is now doing so much better, and she wanted to tell me not to be discouraged, that if we kept trying we will find medication that will really help. She was hopeful for a cure and said the doctor told her husband he would die of something else.

We are only six months from John's diagnosis, and maybe in a year and a half I will be in a positive place the way she is. But I doubt it. We went to a Parkinson's Disease Foundation educational conference last spring in Charlotte and it was clear to me that there aren't any big improvements in treatment in the pipeline, at least in the next five years. Medication has helped, and John is doing well. But I see the signs of how it will get worse. I doubt that in a year and a half he will still be able to travel alone, though I could turn out to be wrong about that.

I do want to get better at enjoying what we have while we have it. But I don't think denial would work for me--I would get angry at what John can't do. And I want to prepare for the future.

acceptance

I feel like I am reaching a place of more acceptance. I said to a friend today that caring for John feels like finishing what I started. We've been together a lot of years and I will see it through. That lets me feel I have some choice, but my reason for my choice is a quiet one, not some crushing obligation or expression of perfect love. I think it helps that I'm beginning to see more of the shape of the stage we are in instead of just finding it confusing. John has planned two trips on his own in September and October. One is to Texas to see a friend and visit his parent's graves. He is finding ways to do things while he still can; I don't have to do it all for him yet.

asking for what I need

I've been pushing John to pay more attention to feelings, both his and mine. Somehow it feels right to push right now, even though I don't think it is going to work. Instead, I'm beginning to see a middle ground that we can actually get to, at least for now.

I'm going to need to learn to ask for what I need, which has always been a weakness of mine.

Here is an example. We were driving the other day and I noticed an ironman sticker on the car ahead of me. I said if I ever do an ironman (long triathlon) I am going to be very tempted to get a small tattoo of the ironman symbol. John said "I hope you won't, that would be such a bad example for the kids." I was silent for a while and then said "I am a person too." He wanted me to explain that and then said I had the right to do what I wanted but he still hoped I wouldn't because he thought it would be such a terrible example for the kids. I'm thinking that instead I could have said: "See my feelings--I'm feeling sad that I probably won't ever be able to live my dream."

If I'm willing to tell John exactly what to do, he will be able to do something to meet my needs for longer. That is better than nothing. A wise priest once told me that where we can hope to get (though it is very hard) is to learn to enjoy the little bit that a limited person who is close to us can give us, instead of resenting what they can't give us.

beds

This is an example of how I get tangled up trying to figure out the answer when there isn't any. The question is whether we should replace our queen bed with twin beds so I don't feel so endangered at night by the REM sleep behavior disorder. But would we get rid of our queen bed?

We have one of those air adjustable beds (a sleep number bed), and I'm fed up with it because my side leaks sometimes (I think the valve sometimes closes properly and sometimes doesn't). I haven't faced calling up the store to get someone to come fix it. It may be out of warranty but it is possible to replace individual parts so it can be fixed to good as new for a fairly low cost. But the problem is only occasional, so I am afraid if they come to fix it it work fine that day and they won't be able to tell what is wrong. Because of his acid reflux and shoulder problems, John has the head of the bed elevated, which I hate because it puts a weird bend in the bed. Will they say that is the problem?

I want to move in a year, and have separate bedrooms then. If we do that do I want to keep the queen bed or have something smaller? My bedroom in the house I want to move back to is fairly crowded with a queen bed. When we move we will have an extra good quality twin bed with trundle. For me to have just a twin bed seems a bit odd, though I really don't need more room (no dogs). But it seems silly to buy a double and have to buy all new sheets.

When we move would we buy John a twin or double air adjustable bed? It has been helpful with his shoulder problems and it seems to me that as it gets harder for him to move around in bed it would be a mistake for him to have the queen bed. Or should he have the queen bed when we move, so it feels like I will still join him there sometimes, and then some day if needed it will be replaced by a hospital bed? Or do we just give him the extra twin, since part of the plan is to get him a really comfortable recliner since he already falls asleep in a chair and spends most of the night there.

It would be possible to not take on the larger issues but just swap our queen bed with the twins in the basement guest room (one is a trundle but pops up and is fairly sturdy). But even that would be a lot of work and it won't help the problem of John waking me up by talking or yelling.

One of my strengths is looking ahead and considering all the ramifications of various possible decisions. But in my present situation I get paralyzed when I do that. Then I'm afraid people will think I'm making a mess of things by thinking too much.

Partnership

John and I talked a little today about the loss of partnership (maybe the Aricept is making a difference that we could have the conversation, though there were a couple of things he couldn't manage yesterday that made me think it wasn't). Our marriage started out very much based on sharing tasks equally, though we had gradually done some dividing on the basis of what we were good at. John still does his own laundry and takes out the trash (with reminding). We had fairly recently come to a better system for sharing cooking--we alternate weeks and when it is our week do both the cooking and the food shopping . When traveling I did all of it but now we are home he is taking his week. It takes him so long, even though he is cooking simpler things, but I really don't want to take over until I have to.

I suggested maybe he could do more of the things he can still do instead of being huffy (as he was at one point on the trip) that they should be divided equally. But when we talked about it I realized that a higher priority for me is for him to clear up his chaos in the family room and the boxes he put in space I had just cleared in the basement. It took him four days to clear his stuff off the kitchen table so I could put on a new tablecloth.

I know, I know, I should be glad he can do any of it. But I feel the loss of the partnership we had. We do have someone who comes every two weeks to clean the house, but getting picked up so she can is always a big production.

Lists

Over the years of John's ADD, I have found some compensating strategies that work. We have pegs to hang coats on immediately inside the door, and they do get hung up. Google Calendar is wonderful--we share our calendars so his calendar shows up on mine and vice versa. I download my Google calendar to a small palm pilot so I can carry it with me.

But lists have always been a problem. I concluded years ago that it was hopeless to get John to use a list, that it was too stressful for him to look at a long list of things to do. The month before our trip I depended on a list of things I needed to do, which was sitting in the middle of the kitchen table, and he never looked at it.

The psychologist who did the neuropsych testing said John should keep lists, and he seemed to think that was a good idea. I wish Google calendar had a way to integrate a to-do list so it would show up to one side of the calendar. I guess I will try Google documents for a shared to-do list, though getting John to check a third thing in addition to his mail and the calendar seems iffy and I wish it didn't take several clicks to get to the list. I actually like the paper list in the middle of the table, but it does get messy. I tried a "Getting Things Done"-style organized list myself for a while, but I think that would be too complicated for John. I set up the Google documents list divided into:

• John short term
• John long term
• For the kids
• Household

We will see if it works. Maybe I should clear off our messy refrigerator doors and print it out regularly and put it on the refrigerator.