Where Everybody Knows Your Name

 

 

Making your way in the world today

Takes everything you've got;
Taking a break from all your worries
Sure would help a lot.
Wouldn't you like to get away?

 

 

 

All those night when you've got no lights,

The check is in the mail;
And your little angel
Hung the cat up by it's tail;
And your third fiancé didn't show;

Sometimes you want to go
Where everybody knows your name,
And they're always glad you came;
You want to be where you can see,
Our troubles are all the same;
You want to be where everybody knows your name.

Roll out of bed, Mr. Coffee's dead;

The morning's looking bright;
And your shrink ran off to Europe,
And didn't even write;
And your husband wants to be a girl;

Be glad there's one place in the world

Where everybody knows your name,
And they're always glad you came;
You want to go where people know,

People are all the same;
You want to go where everybody knows your name.

Where everybody knows your name,
And they're always glad you came;

Where everybody knows your name,
And they're always glad you came;

This past week's visit was much like all of the rest. I found Mother sitting in her chair watching her favorite cartoon network. Her mannerisms were the same, that of gently  and methodically combing her fingers across her forehead and through her hair. That mannerism used to bother me because Joan was always so neat and proper. Doing anything with her hair except perfectly styling it was certainly out of the question. These days though, it's okay with both of us that she finds this stress-release.

I've been told that some of the next signs I'll see as her Alzheimer's progresses, is a frustration on her part to find the words she so desperately wants to articulate. I'm seeing shades of this now, but for the most part, her conversations are still intelligible.

Tonight's conversations were similar to the ones from my last few visit. "I look out the window every day to see if I can see your red car." "The people here are really nice to me." "I like the food, but I'm always full." "They forgot to get my laundry." "Can you fix my candle? It isn't working." I like the man who cleans my room. He found my earring." "How are Braxtyn and Gavin? I bet they are getting big now." And......my all time favorite...... "Everybody here knows my name."

We all love recognition, don't we? A hearty hand shake, a kiss on the check, a tip of the hat acknowledging that we exist. That we are important. That we serve a purpose. Well then, I guess it's no different for Mother either. The most important thing to her is that everybody knows her name. That she matters. That someone cares.

As a care partner or advocate for those who depend on us, it's easy to get caught up in the 'what about me' syndrome. We spend countless hours caring for, worrying about, and advocating for the person who's been placed under our care-radar. We grow weary, frustrated and right out exhausted carrying this burden. We desperately want someone, anyone, to acknowledge how heavy the load is that we carry. But, what about the person we care for? How often do we take the time to deflect from our own struggles and show one ounce of empathy or compassion for their struggles?

Oh, so embarrassed to admit, that for me, it's not often enough. But, for a moment tonight, I listen to Mother whose life has a beautiful purpose, still reminding me that it's not all about me and that she loves being at a place where the troubles are all the same ,and Everybody Knows Your Name.

Cheers!

Who Stole My Blue Shoes?!!!!!!

I recently received a call from Joan's care center. Alex the receptionist has become adept at knowing my mothers quirks. This time however, she had him stumped. He started his conversation with me by saying that he had Joan at his desk and that she was worried that someone had stolen her blue shoes. Puzzled I replied that she owns four pairs of shoes, a pair of white and a pair of black tennis shoes, a pair of leopard slippers and a dress pair of Mary Jane like shoes, but no blue shoes. Alex agreed and asked me to talk to Joan to get more clues, so together we could figure out what blue shoes she was talking about.

Alzheimer's steals so many things from the person suffering from its random hits. One day the suffering person knows the name of every pet they've ever owned and another day, they can't remember the name of their best friend of the past 40 years. First it steals the memory, then dignity, then eventually life itself. A thief with a name everyone knows, but tactics and strategy that no one can anticipate. It steals our word power, then moves on to the big ticket items like taste and smell, and then ultimately removes from us our priceless memories.

After chatting with Mother for a few minutes, she frustratingly gave me the following clues:

1. You know my little blue shoes!
2. They go with me when I walk!
3. On the floor!
4. Larry made then!
5. They aren't there!
6. Oh! You know!

Then the aha! moment struck me...she's talking about the plastic skis on the base of her walker that are shaped in the form of little blue converse shoes. Larry bought them for her from the local medical supply store, knowing full well that folks would comment on how cute they are (thus stroking Mother's need for flattery.)  Somehow/someway they were no longer a part of her walker, which launched a second mystery that needed solving. I assured Mother that we would find her blue shoes and asked her to hand the phone back to the receptionist so we could begin the search.

It didn't take Alex and me long to realize that the therapy staff at Darby Glenn had removed them from her walker. You see, Mother walks around the facility all day every day. In the good weather she ventures outdoors onto the concrete patio, moving back and forth for hours. The skies on her walker had become nubs, causing the staff great concern that she might catch them on a transition strip found in every doorway, or catch on the carpet and become a fall hazard.

Wait, there is more. As Paul Harvey used to say, "The Rest of the Story." A quick chat with the physical therapist revealed that they had removed the shoes and replaced them with a newly engineered plastic ski that resists even a jack-hammer tearing it apart. They quickly realized that Joan was extremely unhappy about her blue shoes being removed. She walked in and out of the therapy room (on and off all day long) muttering, "someone stole my blue shoes." Alzheimer's patients often get stuck on one thing and repeat it over and over like a broken record. (I know because as a caregiver, it's one of the most frustrating indicators of this disease.)

But alas, a quick thinking and compassionate therapist came up with a plan - he drilled a hole in the blue shoe ski, affixed it with a screw on to the new non-destructive ski and re-attached it all to her walker. Final result? The new ski is in its proper place and allows for her safety, but when Joan looks down at the floor she sees only her blue shoes that Larry made for her. A win/win for all of us!

Recess, or Something Like That

Mom complains a lot about never getting to leave the nursing home during every one of my visits. I'm not exactly sure what she means, because the Activities director at her facility, provides opportunities for the residents to travel to restaurants, the bowling alley and even the occasional trip to Wal-Mart to shop.

So once again I crawl into the mind of someone with Alzheimer's Disease and try my best to understand what my fragile mom might really be trying to tell me. For the past year she's been living at the nursing home and has not been back to our home. She left our house (thinking she would return), was hospitalized with dehydration, sent to skilled nursing facility to recover, and then on to her current domicile. During all of that time I've not taken Joan out of the nursing home - no visits to home or other places she enjoys because our car is simply too difficult for her to get in and out of. And, her social worker fears that it will be difficult to get her to go back to the nursing home if she come home, even for a visit (since she has penchant for wandering).

So, I came up with the idea that perhaps I could pay someone to provide field trip outings for Joan. It's the best and brightest idea I've had in quite a while. Before Joan went into the hospital, her early morning care was provided to her by the most wonderful caregiver in the whole world by the name of Donna! Donna took care of Mother for the 18 months prior to being hospitalized. She came to our house every morning from 7:00am - 9:00am, faithfully getting Mother ready for her day at the National Church Residence Day Care Center. This freed me up to get ready for work and arrive a bit less stressed than I arrived during the previous two years (this includes Larry who also handled a "lion's share" of responsibility for Mom.)

What can I say about Donna so you might understand how important she's been to our family:

• She provided a service to us worth much more than the salary she was provided with
• She was dependable and tidy and never missed a beat making Joan's bed, cooking breakfast and cleaning up afterwards
• She put up with a lot from my mom every morning, including enduring multiple wardrobe changes (often snatching things and putting them back into the closet when Joan's back was turned or she was showering so she was limited to one choice)
• She helped Joan with accessorizing, including putting on Joan's earrings, bracelets and necklaces
• She was kind and generous (almost to a fault) to Joan (don't think I didn't see all of those bracelets, etc. that you hand-made for my mother so she would have a red accessory to wear with her red outfit!)
• She became Joan's best friend and advocate - I could often hear the two of them laughing out-loud
• She is/was intuitive to Joan's health needs
• Her presence allowed Larry and I lead a normal life from 7-9 a.m.
• She became a part of the fabric of our family
• What's not to love?

After careful consideration of recent "next steps" for Mother, it only made sense to hire her to be the one to take Joan on her occasional "private" field trips. Just Joan and Donna, with attention 100% on Joan. The first trip was to get ice cream, the second trip to Wendy's for their strawberry/spinach salad and a large lemonade.

I can't worry or wonder if Joan will remember her field-trips (which she probably won't after a day or a week), but what I can be assured of is that she is safe with Donna and that the time they have together will bring my mother joy during those hours.

Please stop thinking that you have to do it all for your family member with Alzheimer's; please, please give yourself a break whenever possible; please look for help outside of yourself; and please consider the person you are caregiver/advocate for. There are things they still enjoy doing. Be creative, think hard, and provide experiences and opportunities for your loved one to enjoy daily life, no matter their boundaries or constraints.

Does mom still complain about being cooped up - you guessed it, the answer is yes. But, am I doing my best to provide opportunities for her to get out and about - YOU BETCHA! As long as my mother still has the ability to do so, I want her to get up and get out! And, that my friends, brings me a great deal of satisfaction!

Devil or Angel?

I enjoy watching cartoons that portray someone with a devil (equipped with horn and spiked tail) on their one shoulder, and an angel (adorned in white with shiny halo) on their other shoulder. Maybe that's because today I'm identifying with those cartoon characters (more specifically today, the red one.)

I wish life were as simplistic in message as a cartoon, but life is more complex than that. I have days when I don't want to be near my loved one with AD (pitchfork armed and ready to fire) and other days when it's okay no matter how the visit goes (halo shinning and straight). The thing that stinks most about this disease is that one minute you're riding through rainbows, then suddenly your trajectory rides straight into the dark abyss. Never steady, never predictable, always outside of your control.

Right now the devil is whispering more loudly into my ear. Judge me if you must, but until you can relate to me with your empathy gene, you won't really understand my feelings. And, I don't judge you if you're a bit disappointed in me. My prayer is that you'll never need to experience this disease. My prayer is that there will soon be a cure, and none of us need live this disease or watch those we love suffer from this disease.

There's a popular saying, "hate the sin, not the sinner." Today I'm saying, "hate Alzheimer's, not your loved one."

If you have a loved one with Alzheimer's or other forms of dementia, or have ever experienced the devastation of these diseases, you can relate. I'd love to hear your comments, whether you're feeling good or evil today.

Where Do I Begin?

These last 72 hours have been bitter-sweet.

My mother was diagnosed with full-blown dementia with Alzheimer's tendencies,and, we celebrated our 40th wedding anniversary. And, oh, did I mention, that my mother has been diagnosed with Alzheimer's? Up and down like the thrill of the beastliest roller-coaster, our emotions have weathered all of the curves, bumps, startling turns, as well as metal scrapping metal and bodies bouncing and screaming with delight and dismay all woven together without anyone being able to discern their intersections.

I love to write - I'm most likely not a prize-winning writer, but a writer all the same. Writing is something I enjoy; something that takes the edge off for me and allows me to express my feelings. As Larry and I celebrated our anniversary this weekend, we talked about ways I might emotionally travel through these next unknown days, months, or possibly even years. I would write. It would be cathartic for me and it might be helpful to someone else who finds themselves going through such a journey.

I've titled my blog, "Web of Darkness". When you think about a spider-web you think about the light that flows between the lines of the web. There is both darkness and light. That's where my mother is right now, somewhere between darkness and light. There are days of clarity and days of confusion, but never in the same quantity. The person I live with changes each day and more recently each hour.

Rule #1 of Alzheimer's: Don't argue - agree. Friday, Joan's driving privileges were taken from her. Sunday, she's expected to give family members a grocery list. This fiercely independent woman is expected to give up the keys to her independence with one hand and give a grocery list to someone with the other. As you might suspect, she did not come up with more than milk and bread. When asked for more items, she became confused, stood up and said, "you think I don't can do anything." "Please sit down while we make out a list that I can take to the grocery," I calmly pleaded." At that, she kept going up the stairs to her residence, all the while murmuring, "I'll just starve then. Nobody thinks I can do anything for myself."

At that, what could I do? One more hour of the journey had begun, the journey between dark and light; the journey between sanity and insanity; the journey between feeling guilty and not guilty. A journey I prayed I was equipped to travel; a journey I didn't ask for.