Traveling with J

  
When our children were small, I used to joke that we didn’t go on vacation; we traveled with our children. J and I are in San Diego to celebrate her 65th birthday, and this trip has some of the same qualities. J, who has Alzheimer’s disease, couldn’t, of course, pack her own bag, and she would have left it behind several times had I not been on top of it. She can’t meaningfully participate in deciding our daily activities. 

But she seems to be having a good time. Yesterday, we took a trolley ride around town and toured Old Town, the Gaslamp District and Coronado.  The weather was perfect. We have eaten almost every meal outside. 

And yet it is lonely for me. J doesn’t converse any more. My pleasure derives from her apparent happiness at seeing new things. 

I can’t help thinking back to our first trip together in 1984. We went to San Francisco and stayed at a lovely bed and breakfast above a Basque restaurant in North Beach. We didn’t have much money, so we stuffed ourselves each morning on the sourdough bread, hard-boiled eggs and cheese that came with the room so we wouldn’t have to eat again until evening. I took J to see the redwoods and we tried to take a picture of ourselves with the magnificent trees. It was well before selfies and I set up the automatic timer on my camera. For some reason, we thought we had to crouch. And so we have a photo of us bent down in the corner while the redwoods soar. It always makes us laugh. 

That also was the trip where we went to an amusement park in Santa Cruz with a renown wooden roller coaster. Our relationship was so young that J didn’t tell me that roller coasters terrified her, and I didn’t tell her that Ferris wheels make me sick. 

I also can’t help thinking that this is probably our last trip that involves airplane travel. Even though we were allowed to board early, navigating air travel is highly confusing and anxiety-provoking for J.  We are staying at a friend’s house, and J has difficulty finding her way around. One more way J’s world literally gets smaller because of her disease. 

Monday is J’s birthday and we plan to go to the zoo and have a nice dinner in La Jolla. The sunset and ocean view should compensate for the lack of conversation.  At least, that is my great hope. 

Entering Alzheimer’s World

Followers of this blog know that J has been rapidly losing her verbal abilities in the last few months. Communication has been very challenging.  A recent column in the Alzheimer’s Reading Room (see link below) has helped enormously. 

It posits that there is a place called “Alzheimer’s World,” where the rules of logic don’t apply. This is the world where it makes sense to use the coffee scoop and put it back in the drawer unwashed.  It is where J puts the bathroom waste basket on the ground, where the dog can root around in it and strew trash everywhere.  It is where all the lunch meat and cheese for the week is placed in the freezer. 

Instead of resisting Alzheimer’s World, the author Bob DeMarco advises to consciously enter the world of your loved one. He further suggests taking a step to the left to demarcate your entry into Alzheimer’s World. 

I have tried this recently to great effect. J and I were getting ready for dinner a couple of nights ago. She was very animated and telling me about something in broken phrases. No matter how hard I listened, I wasn’t getting it. I was becoming frustrated. I stepped to the left and entered Alzheimer’s World. 

I tried to hear things from her point of view. I asked non-specific questions, such as, “That was good, wasn’t it?”  And I began to understand she was telling me about a movie she had watched at her Alzheimer’s Association program. We were both so pleased that we understood one another that we high fived. It was an all too infrequent joyous moment. 

Stepping to the left to enter Alzheimer’s World reminds me of the three steps backward and then three steps forward we take to enter the amidah, the silent standing prayer that is part of Jewish services.  Just as stepping forward physically prepares me for communal silent prayer, steeping to the left now transports me to a place where I can meet J where she is, without judgment or impatience. 

http://www.alzheimersreadingroom.com/2012/08/Alzheimers-World-Expectation-Irrational.html

Noticing

  

I love Krista Tippett and her radio show On Being, which airs on Sunday mornings on National Public Radio.  The show explores the sacred through interviews with clergy, scientists, psychologists and artists. I always learn something.  One show, where she interviewed Alan Dienstag, a psychologist who has led support groups for Alzheimer’s patients, inspired me to pair J with a freelance writer. The two of them now meet once a week and have so far produced a booklet of J’s memories. More important, J very much enjoys these meetings. 

On another recent show, Krista interviewed Ellen Langer, who some call, “the mother of mindfulness.”  Her view is that you don’t have to meditate or do yoga to experience the benefits of mindfulness. All it takes is the simple act of noticing. This practice puts me in the present and often results in feelings of gratitude.  I have particularly focused on paying attention during my morning runs. I now see the leaves as they fall, and the increasingly bare branches. I notice the bright reds and yellows and watch the leaves float on the creek. Often I feel closer to G-d.

Noticing also calms me and gives me strength to accept J’s decline with more equanimity. 

Thank you, Krista Tippett and Ellen Langer. 

http://onbeing.org/program/ellen-langer-science-of-mindlessness-and-mindfulness/6332

http://onbeing.org/program/alan-dienstag-alzheimers-and-the-spiritual-terrain-of-memory/64

J Phone Home

Had a little kerfuffle with J earlier today. The freelance writer who meets with her on Fridays didn’t get an answer when she tried to call her before the appointment at 2. She alerted me and I couldn’t get J to answer her cell or the home phone and the neighbor she hangs out with hadn’t seen her. It turns out J left her phone at the dry cleaner yesterday. Another mystery solved and crisis averted. 

What Is She Thinking?

As J loses her verbal abilities, I find it difficult to understand what she is trying to communicate or to apprehend what she understands and what she misses. Often now, when I ask her a direct question, I get no response. If I am less than patient, I will say, “J, I just asked you a direct question. Do you have an answer?”  More often than not, I get a blank stare.  Or she will seem to concentrate very hard as I repeat the question, and I may get a short answer.

I have accepted that six years into an Azheimer’s disease diagnosis, J and I are not going to chat about the latest presidential debate, or World Series strategy. I know to limit her choices when ordering in a restaurant. “Do you want a burger or a club sandwich?” works a lot better than handing over a multipage menu.

Yet she still has some fairly sophisticated thoughts. She came to my side of the bed on Saturday night with her watch in her hands and held it out to me, saying nothing.  I asked what she needed. “Do you need a new battery.  “No.”  “Do you need a new strap?”  “No.”  “I’m sorry.  I don’t understand what you’re trying to say.”

Then it hit me the next day.  Daylight savings time had ended and J wanted me to set her watch back.

I do find myself wishing I had more insight into what is going on in her head.  Does she understand more than she can communicate?  Who knows?

Fortunately, J still remains happy almost all the time, which is a great blessing.  Perhaps I have to accept that just as J can’t always communicate with me, I can no longer always interpret what she’s trying to communicate, and I certainly can’t read her mind.

 

 

Help Is on the Way

   
The long, slow slide continues.  I got word yesterday afternoon that J was not home for a weekly session she has with a freelance writer to capture her memories. When I got home, I asked J where she had been. All I could get out of her is that she waited a long time on the train and “tried to go around it” and felt “stupid.”  Where was she?  Why?  I have no clue. 

J cried. I tried to understand what she was feeling and why.  J seems to feel bad that her brain doesn’t work as it used to. That is double heartbreaking.  It is bad enough that her ability to think and communicate is diminishing. It is almost worse that this process makes her feel bad about herself.  

Then we have dinner and she forms a perfect sentence to praise the food I’ve made.  She smiles and says she feels fine. And there is the blessing of Alzheimer’s disease for the person experiencing it. J has no memory of the distress she was expressing just minutes before. 

Fortunately, my search for a companion has been successful. All of my good leads came through Care.com.  I made an offer that has been accepted pending a criminal and reference check, which I am certain E, the new companion, will pass. I am very excited about this match.  E seems to be exactly what I have been looking for – a cultured, educated woman who will be able to stimulate J and take her to museums and movies and other outings. E also seems kind and compassionate.  She starts the week after next. The only catch is that she is $10 an hour more than I thought I would have to pay. 

The worries about having enough money for J’s care have been relentless enough that I finally have reached out to an elder care lawyer. It was not a matter of resisting legal help; it’s just finding the time to work full time, run the household, deal with J’s medical needs, have a little bit of my own life and fit this in.  I did not buy long-term care insurance when J was well.  Big mistake.  It always seemed so expensive, and of course we can’t get it now. We have a nest egg from when J was working and she gets SSI, but is it enough?  Stay tuned.  I will report once the lawyer and I meet.

 

Home again

I had a wonderful five days away, especially connecting over the weekend with four close friends from more than 30 years ago. We picked up the conversation as if we had all seen each other yesterday.  We are in our 50s and 60s and have collectively weathered the death of a child, divorce and physical impairment, as well as Alzheimer’s disease.  We are a testament to resilience. 

Reentry was not as difficult as it sometimes is. Perhaps I can credit the horrible sinus head cold I picked up on my way home on Monday. I slogged through work on Tuesday, went home early, and called in sick today. I can’t remember the last time I spent a day in bed. It was definitely good for my body and soul. Sleep, bad TV and online shopping can be therapeutic. 

My pace was frantic before this trip, so I can’t really be surprised that I got sick twice in one week.  The cold forced me to slow down. I even ate dinner at home two nights in a row and watched TV with J as our evening entertainment.  Note to self: ratchet down the schedule. 

The search for a part-time caregiver continues. A friend and J’s brother and sister-in-law are culling the list and presenting me with candidates to interview in person. I am very grateful to them.  We had a good meeting with a candidate tonight who might work out very well.  I was conscious of not being firm on the hours we are looking for. The truth is that I’m not 100 percent sure what we need. I only know that J is lonely and it is not good for her to spend so much time alone. 

That doesn’t mean she doesn’t think she is perfectly fine and requires no help. When she gets resistant, I explain that I need the assistance of someone to do light housekeeping for me. That explanation seems to satisfy J.

I continue to think that J is worse than she presents to others. When I was going upstairs tonight, I asked her if she wanted the radio on or off. I couldn’t understand her response. It was difficult for me to figure out if she understood the question and was having trouble communicating her preference, or if she had no idea what I was asking. At one point, she smiled and said, “Yes.”  The problem was that I had asked, “Do you want me to leave the radio on or off?”  “Yes” is not a helpful response. This gave me some insight into how she might fool others for short periods of time. Smiling and saying, “Yes,” might get her through a lot of situations. 

And then I thought that smiling and saying, “Yes,” might not be such a bad way to go through life. 

Denial

I am on a business/leisure trip without J.  I have many resources set up at home to make this possible.  I arrived yesterday afternoon, had lunch with friends, went to a meeting and was looking forward to an evening of socializing with people who don’t have Alzheimer’s disease.

Then the gastric distress started. I made it to a reception to let my friends know I would not be joining them for dinner, grabbed a ginger ale and headed for my room. Nine and a half hours later, I am awake and feeling better, I think.

I have not been sick for as long as I can remember, so I think this bout is a little bit of a wake-up call that I am trying to do too much and that living with J is not as easy as I let on.  While I try to eat right, exercise and get enough sleep, I also firmly hold onto the belief that I am indestructible. Of course it is only an illusion.

In addition to working full time, I am training for a half marathon next month, dealing with an early November work deadline that requires attending evening functions, helping our daughter find an apartment and move out of our house and looking for a part-time caregiver for J.  All while trying to keep up with friends and family. Looking at that list, even I have to wonder why my body didn’t mutiny sooner.

It is also stressful that, in my mind, J’s decline is palpable and yet friends and family who see her only occasionally don’t recognize it. From where I sit, J is much quieter and withdrawn. It is hard to get more than a sentence or two out of her, especially at home. It is better when we are out doing an activity, and it is hard to keep up a constant calendar of activities given my other obligations. Part of me has not wanted to face this new reality.

I am hoping that getting a caregiver for J will help alleviate some of this stress, and it has been difficult to find someone . I wrote an ad about three weeks ago and sent it out to my synagogue and every one I know who is involved in a faith community.  I was hoping to have someone live in with room and board being part of the compensation, yet no one who fits that bill has responded. I got impatient and posted the ad on Craigslist. Big mistake. I am so inundated with responses, I don’t even have time to read them all.  I have one person coming to interview next week. Perhaps she will be the one. 

In the meantime, I am hoping I will feel better this morning and can enjoy this time away. 

Tough Times

Tough day and night. J exhibited her first paranoia. She couldn’t find her down vest and assumed one of the contractors who have intermittently been in the house lately had taken it. It is much more likely she left it somewhere.  I had the presence of mind to keep that thought to myself. 

Then we went to dinner and the theater with old friends. J was not very engaged in conversation. The decibel level at the restaurant was quite high, which no doubt contributed. She also was almost silent on the way home. 

This followed an afternoon where I was pretty cranky. We have an event to attend tomorrow and I was grudging about helping J find an outfit for it. 

So what do I take from all this?  Not every moment of care giving can be joyful or meaningful or even interesting. Sometimes it is just painful.  And I draw strength from the thought, as my sister D has taught me, that it won’t always feel this way. 

Fried or Grilled?

 

J and I are visiting her brother and sister-in-law for a couple of days. On Thursday night, we had dinner with our sister-in-law and her mother, E.  It was somewhat painful. E is 89 years old and suffers from dementia.  She is farther along than my 64-year-old wife, J, who has early onset Alzheimer’s disease.

E was not sure she had ever met us, although she certainly has several times in the 30-plus years her daughter and I have been part of J’s family. E asked repeatedly where we were from. We patiently answered every time. 

E also asked many times if J and I are sisters. J and I have been partners for 30 years and have been legally married for two. I saw no reason to try and explain that to E.  I’m sure it would have been confusing for her. 

I didn’t take any of this personally. I understand that E sometimes asks her daughter, K, if she is married. K and J’s brother married 30 years ago. 

My first reaction to this visit with E was it brought back the pain and hilarity of my father’s dementia. He had emergency heart surgery in 1999 and was cognitively impaired for the rest of his life. At one group restaurant meal, which is now part of family lore, he repeatedly asked, “Fried or grilled?” in reference to a calamari order.  “Fried, Dad.”  “Fried or grilled?”  “Fried, Dad.”  You get the idea.  For years after, the refrain, “Fried or grilled?” would cause me and my sisters to double over in laughter. Not in a mean way. Just sometimes we need to see the absurdity of a situation and laugh about it. 

My second reaction was to question if J will soon have the same diffculties as E remembering people and following conversations. J already doesn’t recall people she doesn’t see often. And she is often very quiet in group settings because she can’t keep up with fast-paced talk. I tell myself that the course of Alzheimer’s disease is highly individual, that none of us knows what tomorrow will bring, and that all I can do is my best to meet well whatever unfolds.

My final reaction is enormous love and respect for K. She is there for her mother, E, every step of the way. I have never heard her complain or express fatigue. She seems to have limitless stores of patience and love. I am lucky to have her as part of my family and support, and as an example to emulate.