I want ...

Last Monday I visited Bob and took him a milk shake. He loves sweets and after we'd shuffled about a bit and he'd finished the last drop of shake, we were walking back toward his wing. He struggled trying to say something. " I want ..." He forgot and focused on something else. Then "I want ..." And at last he got out "I ... want ... to live ..."
My guilty self filled the blank ___ "with you" and redirected the conversation.

Yesterday I visited Bob and took him a piece of my birthday cake. Again he was so happy and loved every bite. Then it was ice cream time at the home and he got cookie dough ice cream which I fed him. Almost finished, he again began "I want ..." and at last made it to "I want to live ... here" finishing with a big smile.

It dawned on me: he wants to live wherever but with me feeding him sweets.
That seems like a happy place.

Conversation

As we move close to the one year anniversary (seems way too jolly a word) for Bob's moving into a care facility, I've come to realize how much of our time was spent in conversation. We'd sit and talk in the mornings with our coffee; for years the alarm went off at 4:30 and we sipped and chatted for an hour before getting ready for the day.
Weather good? We'd sit out on the porch or deck, sip a glass of wine, and talk.
Time to go for a walk, we could walk (and sometimes argue) our way through a good three miles.
No one else can talk with me like Bob could.

Beaujolais noveau

Bought a bottle this week. Good year.
Years ago we always vacationed in Florida around Thanksgiving, when the BN came out. Bob took great delight in getting a bottle from the first shipment at a small local Sarasota wine store.
Everything has memories for the lucky ones among us.
Happy Grateful Time.

Losing his rings

Bob has worn two rings for over 20 years: his wedding ring and an initialed signet ring which I gave him for our 22, 23, ?? anniversary. (In recent years he's "remembered" the story that our daughters gave him that ring --who cares?)
Anyway, he has always been obsessive about these rings. Worrying if he placed them to the side when washing hands or putting on lotion.

Two weeks ago I had a call from the "home." He'd put the signet ring on the wrong finger, hadn't told anyone (really is incapable of such realization and communication), and in worrying the ring had caused the finger to swell and even cut his finger. They had tried ice, vaseline, force -- everything they could think of to no avail.
The problem was now in my hands.
Quick google search brought up several options: take him to a jeweler (yeah,sure!), a doctor (fortunately it was Rosh Hashanah and our doc's office was closed) or maybe a well equipped EMT.

Knowing we get what our tax money pays for here, I called our local fire hall where the answer was a confident, "Sure, we can do that. We'll send a truck right over."
I live only five minutes away but they beat me, and when I arrived, Bob was surrounded by aides trying to comfort him and two calm, competent EMTs with a little ring cutting tool.
We got the ring off, but not after many cries of distress from dear Bob who had really no idea what was going on.

"No! Stop you're hurting me!"
"You're killing my hand."
The aides and I hugged him, tried to soothe him.
"You don't understand. They're hurting me."

Finally the ring was off and he cradled his hand. I got him to do some deep breathing, but he still moaned quietly. One of the aides brought him a glass of apple juice, he drank it. He continued to shake his head as if in despair.
Another aide brought some cream for the small cuts on his finger and put a band-aid on it.
Bob muttered, "They were trying to take my hand."

The other "inmates" sat quietly and one woman commented to me, "Hey I think he's crying."
Other folks seemed completely unaware of the drama.

The EMTs left, telling the supervisor this was their best call of the day: success and no harm done.

Bob continued hugging his hand until I told him it was time for supper.
"Finally, I've waited long enough," he said. "I'm hungry."
The band-aid was gone.

Me again

I've been gone. Life has been crazy. My father is failing now too. The two most important men in my life decline and I am fortunate to have my family and my job. For now I will only share my oldest daughter's Facebook post from yesterday, World Alzheimer's Awareness Day.

Today is Alzheimer's Awareness Day. My dad was diagnosed with early-onset AD at age 59; now, at 67, he is living in a nursing home. When I visit I can never tell for sure whether he recognizes me (although somehow he always knows Lily!), and his brain is losing the ability to control his body's systems. It's a horrific thing that I wouldn't wish on my worst enemy. It's too late for my dad, but there is real progress happening and real hope for a cure.
Please consider a donation to the Alzheimer's Association to support their research, or give specifically to the St. Louis Chapter, which is one of the best in the country and which became a second family for my dad.

Morning Thoughts

IF

(for spouses of an Alzheimer’s victim)

If I didn’t think of you this morning

Except when I awoke alone,

If I complete my daily errands

Without your humor and your help,

If I can make it on my own,

Know still you are remembered

even as memory has flown

from you, my darling.

If you can’t remember

Who I am or what my name is,

Never fear.

I have memories enough for two.

Visiting Anyone

Totally in line with yesterday's experience, I want to share this wonderful post with you. Please read it; it applies not only to those of us who love someone with Alzheimer's but to all of us.
Share time. It's the best gift we can give.

http://www.markschlereth.com/2011/07/01/encouragement/765/

Happy Independence Day!

Visiting Bob

Last Monday when I went to see Bob, at one point he said to me, "Would you mind if I ask you what your name is?" When I said Nancy, he nodded. That made me decide to tell him who I am each time I go visit. Just a quick, "Hi, Bob. I'm Nancy, here to see you."

So yesterday when I went, I gave him a hug and identified myself. (By the way, there are two Nancy's who work at GV which caused a bit of confusion during Bob's early weeks.) He said, "But you're not my Nancy. I don't know where she is."

I assured him that I was his Nancy. His smile broke my heart. He said he thought I'd gotten angry about taking care of him and he would never see me again. He was soooo happy.

I am reminded how dangerous assumptions are, most especially in our significant relationships. We can't go backwards so we should be sure we move forward in a way that won't leave us with regrets.
Go visit someone important to you today.

June 10, 1967

Forty-four years ago we were married at Christ the Teacher Chapel (appropriate for two teachers-t0-be) in DeKalb, Illinois. Bob doesn't remember our wedding now, but that's ok. I do. We had a grand time, we celebrated with family and friends, my Dad walked me down the aisle, I saw the smile on Bob's face when he saw me and suspect I looked as happy. It was lovely.
Memories are good and because someone we care about can't recall doesn't mean we should put them away. We must embrace who we have been and who we have become.

In an odd turn of events, my husband's roommate at the care facility (an even younger victim of this terrible disease at barely 50) is the father of two young men, one of whom Bob coached in freshman football and the other Bob taught in creative writing class.

The son who played football wrote me a letter talking about how hearing who his dad's new roommate would be took him through all the stages of grief associated with learning about his own dad. He said "The Denial led me to look Coach up on the internet as I wanted there to be two Bob Ms in St. Louis... But, after reading that he had volunteered, after his initial diagnosis, to help other Alzheimer's patients and families to deal with the disease, I knew it was Coach."

Yup, that's the guy I married all those years ago. It hasn't been pretty all the time, but it's always been filled with love and commitment. Those will remain "until death do us part."

Cleaning up

Closet cleaning, rummaging through files, shredding bank statements from 2001 are all ways I deal with stress and stay busy. Today I was cleaning up my desk top and found one of my favorite pictures of my Bob. Our son in law Mark had just installed a new mailbox and Bob was delighted and joking around.
Be still, my heart.

How am I?

How am I? Better and worse.

I mourn the loss of dreams I thought I'd given up long ago: being retired together, going out to dinner, arguing over politics, traveling the world, playing with our grandchildren, taking them on trips like my grandparents did with me.

I miss waking up in the middle of the night and being able to nudge his leg with my foot; even though he was totally dependent on me, he was a physical presence, the guy who stood by me for 44 years (our anniversary, June 10). I've been dreaming a lot about him. It's the real Bob in my dreams, the one with the confident smile and the wicked sense of humor.

I miss him all the time, every minute.
I'm getting better, but ... I'm getting worse.

And to keep us smiling

This, the current light of my life, granddaughter #1 (#2 is due on July 2 although as she lives in Madrid, Spain, I'm hoping for the 4th of July) illustrates how I feel as I maneuver through life these days.

Just close my eyes and hope for the best.

To l'oiseau, who follows this blog

Thank you.
Most of all on this journey I have learned that we can not isolate ourselves; it's too crippling. Your comments and shared footsteps have strengthened me and encouraged me to continue to ease my soul and share this trip.
God bless.

Visiting Bob

I went again on Thursday and he was really glad to see me again. One of the workers was walking with us down the hall and he couldn't remember my name to tell her, but he said I was his honey :) Bless his heart. He's pretty much out of it and "talking" with him is sort of a magical mystery tour. I asked if he'd like me to read him a story but he seems to have no interest in that.

We sat and sort of chatted. I commented that I had intended to bring my manicure set and one worker handed me a couple pair of nail clippers so we talked while I did his fingernails. That was good as he doesn't like to have it done and I think will be least troublesome if I do that. Then I left. I'd brought a crispy candy bar-like thing and I gave him half of it as I left, so he seemed contented. I told him I'd return since I had a care meeting with the nursing supervisor and the social worker.

After the meeting was over, I went back; he was in the same chair. We went for a walk in the outside courtyard and although it was warm the humidity was low and it was breezey. We just walked around and around and over and through and between. He complimented me on what a good job I'd done with all the bushes and flowers.
A couple of times I asked if he was getting tired as I was (getting tired of it); he wasn't so we walked for probably 30 minutes. He just talks and rambles; a couple of times he came back to mention that he doesn't have any money but he couldn't give me a reason why he needed any. He also said he didn't have a car which was probably good since he can't drive. It's stuff like that.

Mostly it's being a comforting presence to him, being sure he knows he is loved. He was glad I was there; no problems when I said I needed to leave. We walked back to Aspen and I gave him the other half of the cookie/bar. Kissed him good by and left.

The first visit

Waiting for two weeks after placement was incredibly difficult, but finally I made it and the time came when I could go see him. I worried that he would be angry or resentful or that he would beg me to take him home. That's because I still think of the other Bob, not the man before me.

I held his hand -- making a physical connection -- and we sat and chatted, sort of. I brought up old funny stories, some of which he remembered and we relived. He refers to "being in this place" and said he'd worried about some of his friends; I was able to reassure him that I am taking care of everything and everyone. He seemed glad. He was very pleased when I said everyone thought of him and sent their love; he gave a big smile, the only one I think. He talked about Lily, our granddaughter, a lot and told me several times that she had been born in Scotland. He said he didn't know that Amy was going to have a baby.

He seemed relieved to see me at first -- like he used to be sometimes when I came in late to pick him up from daycare. He was pleased when I told him I'd bring Lily to see him but that it would be a while. He told me she lives a long way away. When I told him I would be back to see him, he just nodded -- no affect. I wasn't sure he even knew who I was, but the social worker said she was certain he did.

I stayed about 30 minutes and by then they were getting stuff set up for lunch. I told him I had to go and it was lunch time for him; he said, "Good. I'm hungry." As I left, he was still sitting in the same chair, sort of motionless.

Time Passes ...

... and we heal or adjust or accept.
Bob's been at the care center for two and a half weeks now. I survived the two week - no visit as recommended by the facility. I try to honor professionals; they've had the experience. The social worker was fabulous; quickly emailing with updates and answers to my questions. (He was always doing "as well as could be expected" but did need the anti-anxiety med for the first couple of evenings -- me too!)
I am so fortunate that Bob attended daycare for over a year at this same place since he and I were both familiar with lots of the people; can't imagine trusting through this otherwise. The wonderful angel who runs the daycare has continued to stop in and visit him daily during the week, giving him his kisses and hugs, chatting with him during breakfast, and then emailing me about how he's doing.
Both of us are making the changes we've needed to make; I guess.

Closets

A little at a time.
Casual people that we are, our closets, especially Bob's, are filled with t-shirts; we bought him at least one on every trip and on most occasions.


This morning I sift through his side of our closet, every shirt a memory from World Cup 2006 (was it only five years ago?) to Stop Genocide in Sudan to Plays Well With Others. Some shirts I can't part with because I see him in them. Others I keep just in case ... in case of ...

Day #3 without Bob

When someone you love dies, for example, my father in law died suddenly at age 56 of a heart attack and while not totally unexpected it was unexpected and shocking, everyone knows what happened.

Everyone gathers round about you and cries with you and brings casseroles and sings songs and shares memories. You have that long first year of mourning, but people know.

With Alzheimers one day a doctor pronounces the sentence and you leave with a prescription and life pretty much goes on but the mantle of the words wraps you and you are sort of quiet about it and few know and, if you're smart, you make some legal plans and decisions, but you feel a bit embarrassed or shunned or odd.

In our case, we came out and joined the local Alzheimer's community. I thought we faced this head on, but I still denied, denied -- I didn't think I did but I did not embrace death of the spirit of the man I love.

Slowly over the years, as the caregiver, you notice that the victim is slipping away. Much of this came when I'd see him at daycare and watch from afar as he sat by himself at a table not eating his snack or I would see another caregiver helper her spouse out / in / into the car and I'd have that moment of realization: Bob is like that!

So day 3 is here and I am filled with doubt and guilt and regret and denial.

Placement

Yesterday Bob went to his new home.
This morning I awoke with the image of giving him a hug as he sat in a chair and him saying to me, "I'm lost."
Me too, my darling, me too.

He's leaving home

I've filled suitcases for many trips we've taken over our grasshopper years. Packing is the strangest thing. I'm putting stuff into a duffle bag and a box, and everything has his name written in permanent marker. Permanent marker.

I find myself thinking should he take this? Maybe I should keep this shirt at home ... why? Why? In case of what?

If we were divorcing, I could throw his stuff out in the yard.
If he were dead, I could give it all away.
Packing is the strangest thing.