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.

Double Vision

Ever since I received an email telling me that the care facility which I'd chosen for Bob (the same place where he attends daycare 2-3 days a week) would have a surprise open Medicaid bed in Aspen, their first step ward, I've had double vision when I look at my husband of almost 44 years.
When I see him, I can not avoid the confident, intelligent man I married, the guy I've traveled all over the world with, the one I'd hoped to retire into the sunset with.
I thought those dreams and that person were behind me, that I accepted the daily new and sadder and diminishing man, but now I realize that the shadow self has ever been there. My memory remains good. When I see him smile now for some creature comfort thoughtfulness, I can't forget the guy who got all my stupid jokes, argued with me about politics, and agreed that we should be grasshoppers not ants.
I repeat myself. I know I can't help the man who's here beside me. I so miss the guy he would have been by now if Alzheimer's hadn't robbed us of our "golden years."
MAKE THE MOST OF EVERY SINGLE MOMENT. We can't be sure we have a tomorrow.

Probably Time

Not to get personal, but ...
this morning Bob was in the bathroom and I was there to help him. I was trying to get him to put the toilet tissue in the comode. He wanted to put it in his pocket as it was "still good."

These little mishaps make my decision seem right if not easy.

Death ... again??

A new step. I will be placing Bob in a care facility next week. I'd planned on this move during the summer: I am exhausted, I'm having health issues myself, I am 65 (just), I can't let AzD steal two lives. Can I?

This is another of many, many deaths. Most of us experience the loss of our spouse only once. We who share our marriages with Alzheimer's live through many small deaths.

I thought I'd avoided denial, but as I look into a future where I won't move incredibly slowly through the grocery store being sure he keeps one hand on the cart, as I think of having our bed all to myself without him beside me so I can hold his hand in the middle of the night when he doesn't even know it (even if I do have to wake and cover him each time he gets up), as I think of not having him offer to go along with me to parent teacher conferences so he won't worry about me driving at night, I face the fact that through these past six plus years, for better or worse, he's been with me, damn it!! I've not had to give him up.

I know it's time but I hate it. I hate it! I hate it!
I feel weak and selfish and guilty. I know it's the right time and I hate it.
I hate it!

The Man Who Mistook his Wife for a Hat

Oliver Sachs wrote this wonderful book about various neurological problems dealing with perception and memory. He didn't intentionally write about Alzheimers but ...

Today Bob's brother called; it's been perhaps a month since Bob's talked to anyone on the phone and those of us close have seen major decline in the past weeks.

I wasn't quite ready for the difficulty of the phone call. First Bob had trouble getting the phone to his ear; then he came over to me but was unable to ask a question -- brother wanted to see if there were other phones off the hook or something as he had a terrible connection. Problem solved finally: Bob's physical response to the phone was to use it as a razor. and since he doesn't shave on the weekend, he's got a healthy beard. Voila! static!

But the troubles continued. Bob was totally unable to have a conversation; he held the phone on his lap, shaved with it, tried to set it down; he talked in a quiet, whisper voice as well. When I attempted to intervene to help, he accused me of trying to keep him from talking to his brother.

Then Paul asked a question about music and suddenly full voice, Bob broke into song, "Hello, my friend, hello, my friend."

The brain and how it can disconnect.

That danged old cycle

Something about holding a sleeping child in the midst of loss comforts beyond belief.

I know that I must be letting go of my father at the same time that I am dealing with the loss of my husband, putting him in a long term care facility which he won't leave. The finality of that personal decision seems not much different from realizing that an 89 year old dad who says "Let me go" has probably lived as much of life as he wants.

So I rock my grandchild (his great grandchild) and I smell her breath and I keep "pink bunny" near her chest and I know the cycle of life is real and wouldn't be so sweet if it lasted forever but then cycles are supposed to last forever. Round and round I feel
myself spinning. I guess no one ever said each of us gets to ride that cycle.

Whitman said, "Look for me under your feet. I am the grass."

Sometimes I think I'm chafe, but today Lily, my granddaughter, held her first tiny branch of forsythia, and I am reminded that spring does finally come around and all the cliches are true.

Oh my!!!

TODAY:
Toddler tunes downstairs.
Solid gold oldies upstairs.

CHECK:
Is the toilet lid closed so Lily won't fall in and drown?
Is the toilet lid open so Bob can find it and use it?

GETTING Bobba dressed:
"Here are your socks, Bob. Bob! Not the shoes. Take this sock."
I put the sock into his hand. He gets it on.)
Lily hands me his other sock and says, "Bobba.

A minute ago, I run back to the bedroom to check on both of them: Bob is bopping to "Willy the Wooly Mammoth" since I've switched to toddler tunes upstairs.
Lily is eating one of my credit cards as she's gotten into my purse and is thinking of shopping.

Let the good times roll!

P.S. Lily is my 14 month old granddaughter:)

Lost, lost, lost

This may be a theme for a bit.
Overall Bob still sleeps well at night. He can even get up and walk down the hall to the toilet. However, returning to bed has become enough of an ordeal that I am fully awakened nightly.
He generally makes it back to the bedroom, but he has a tendency to make a right turn which sends him to my side of the bed (one time he plopped down on my sleeping form!!! that's one reason why I make sure I wake up) but more often he can sit on (his side of) the bed and then begins a fumbling mess until he manages to get under the covers without shoes. Almost always he needs my assistance.
A couple of nights ago I was aware that he'd not returned to the bed in an expected amount of time (a week or so ago I had found him down in the kitchen wandering about; this time I looked into the bathroom, didn't see him, went in search, no luck. I returned to the bathroom to look again and glanced into the connected tub room: he was standing in the tub.
Unthinking I asked, "What are you doing in there?"
"Where? Where am I?"

Minefields

So, I've been away ... mentally. Otherwise, my friends, life has continued.
Of course, Bob is deteriorating and much has changed and nothing has changed over the past four months, but I will try to catch up.

For now, here's how life has been:

Up one morning in early November in pretty good spirits.

We watched tv and drank our coffee altho’ I had to turn the news off quickly when they interviewed the woman whose husband was shot by Mexican pirates while jet sking on the Texas Mexico border; why is she on all the news shows??? Bob is already bothered by the cartels and wants me to agree that we will never travel to Mexico.

Done.

Time to go upstairs to shower and shave.

“I’m tired of shaving.”

OK. You want to skip today?

ForEVER.

Fine. Should I run the shower for you?

“I don’t need to.”

"I’ve turned the music on. Why not sit down and listen to it?"

No reply.

"I’m going to go take my shower."

“Good for you!”

I get the water ready and my robe, then look for him. He’s not in the bedroom with the music; he’s sitting in the great room and will not talk.

I have to shower; I still go to work if only part time. When I come out, he’s not on the couch. He doesn’t reply to my calls. Finally I find him sitting in the kitchen at the table.

In a really cheery voice, I say, “Oh, would you like to have your breakfast now?”

Nothing.

I go over and take his hands. I ask him to come on upstairs with me where the music is. He gets up but pulls away from me as I’ve been gently guiding him by his elbow.

He is lost. I can't stay with him emotionally at times like this or I will break.

We get upstairs, him: quiet and glum, me: fake merry sunshine.

Still no shower; let’s just change into clean clothes.

“I had perfectly good clothes and now they’re worth … worth … nothing!”

"These are good clothes but you wore them all day yesterday and last night."

"See. You can tell I like them. They're perfectly good."

I cave. Who really cares? They're perfectly good.