AN UPDATE E-MAIL

Dear Family and Friends,

We spent a quiet Christmas Eve and Day at home and wish we could have given each of you a personal hug and a big, festively wrapped gift of something magical, tangible or otherwise, that you have always wanted for yourself.

New Year Eve was spent quietly as well, due to the cancelation of our annual party so friends could stay at home, warm and cozy and safe, during a major snow storm.

I haven't been sending updates about Gregory's and my Journey with Alzheimer's because for a long while things have been, well,  just ... "even." Also, by keeping a BLOG, I have not felt the need to update or retell the stories over and over when we talk on the phone or meet in person because you can keep tabs on us with the BLOG if you choose (regularly or periodically.) 

Since the beginning of my BLOG "m horvich cares about alzheimer's" in July of 2010, there have been over 657 posts with close to 23,000 hits. It is humorous, sad, trite, profound, and deeply honest. I am grateful that perhaps I can help my readers keep up with our life and also for some readers, I can provide the ability to learn from my experiences and help them to realize that they are not alone with this insidious disease. 

http://mhorvichcares.blogspot.com

I wish that this could be a routine Christmas Letter which talks about our travels (we didn't go anywhere,) our children and grandchildren (we have none,) our pending surgeries (none,) our pets (one died, two new kitties added)  etc. ... maybe written in poetic form? But now-a-days our life with Alzheimer's has been progressing at such a rapid rate that I feel it is important to share with you where and who Gregory and I are today. 

Gregory seems to be mostly unavailable to himself and to those of us who love him. My main aim since Gregory was first diagnosed some ten years ago has to maintain a sense of normalcy, order, calm, and safety for us. 

Peace at home has been more and more difficult for me to provide, not for want of trying, but for the insidious manner of Alzheimer's Disease. Gregory is more confused more often, seems "lost," and cannot tell me when he needs something or when something is troubling him.

He just gets upset and I try to guess the rest. Sometimes I can calm him down and distract him but recently I have not been as successful so I just hold his hand while he cries or is upset or depressed. He has been exhibiting some newer bizarre behaviors which I have not experienced with him before.

While being out and around has always a little more difficult, being out and in social situations is becoming more and more difficult if not close to impossible. His using the bathroom and navigating the food on his plate and my fear of the unexpected and his safety have become more of an issue when we are away from home.

I like to say, "On a scale of "Horrible" to "Horrible," I would rate our situation as "Terrible. (I have been saying this for a long time, but now ... things have become more horribly terrible!) I have an appointment with his neurologist and a social worker to discuss next steps, medications, and emergency precautions, etc. 

We have a Northwestern student, in for 15 hours a week to provide me with some "get away time" and to provide Gregory with  a companion and distractions other than those I am able to provide. We are grateful to him for the gentle care he provides.

Meanwhile, somehow, we carry on, try to enjoy life, wake up each morning and go to sleep each evening. In case we see you or talk soon, I wanted to set you up to expect the worst so you will probably be disappointed and say, "That wasn't so bad!" 

But it is. I suspect, while trying to be optimistic as well, that 2014 will be quite a different/difficult/major change year for us. People wish us Happy New Year, I reply with "Thanks," but my heart aches.

Here are just a few of the things we face every day: GREGORY ...

•Might remember who you are but not be able to say your name

•Gets easily confused and frustrated

•Cannot attend to more than one person at a time addressing, suggesting, or helping him

•Does not comprehend most helping words

•Often physical demonstration doesn't work

•Doing for him by others is the only way sometimes

•Has trouble being in noisy, busy places 

•Has real difficulties following simple directions like, "Sit here" or "Eat."

•No longer understands orientation directions like "On, Off, Up, Down, Under, Over, etc

•Needs help getting dressed and undressed

•Misses parts of his face when he shaves

•Has taken to putting underarm deodorant on his face if I do not intervene

•When out needs help putting on, taking off, keeping track of coat and gloves

•Is almost totally dependent on me for everything all the time

•Has trouble fastening his seat belt in the car

•Cannot do math, write, or sign his name

•Has trouble navigating his dinner plate if it contains too many items

•Has difficulties managing a knife and fork

•Eats a lot with his fingers

•Doesn't see items sitting in front of him

•Asks if the remainder of the food on his plate or beverage in his glass is his

•Has trouble lifting a glass of water or mug of coffee without shaking

•Is more clumsy and less sure-footed

•Can't put a verbal sentence together but rather constructs a verbal string of nonsence

•May or may not understand your sentence

•"Familial Tremors" have always been a part of his family's history but his hands now shake badly

•Sleeps a lot more, 9-10 hours a day with at least one or two naps a day

•Will try to make a comment and it will end up being a series of connectors without a subject 

•Will wave his hands saying, "You know, you know" when being unable tell you something

•When focused on one item locks into it and is unable to unlock when pointed in another direction

•Is easily startled by loud (and sometimes not so loud) noises or sudden moves

•Needs monitoring with his bath-rooming and assistance in all aspects of the activity

•Does not recognize his body's signals for having to go to the bathroom

•NOT incontinent because I send him to the bathroom every couple hours

•Cannot shower by himself and needs assistance soaping up and rinsing off

•Gets emotional easily, usually over good things

•Gets emotional easily, lately over sad things or when 

•Seems more aware of his difficulties, losses, and sadness

•Is depressed, listless, and undirected more and more

•So far keeps appropriate social behaviors 

•Sometimes says hi to strangers on the street

•Gets assertive in his hand waving when he feels strongly about something (good or bad) 

•Cannot express what he is feeling, just gets upset

•Is NOT catatonic but often sits and stares into the distance

•No longer has either receptive or expressive language.

•Seems more quiet, distant, and lost

•Is mostly not part of the group when with company

•Is able to do very little to entertain himself or occupy his time

•No more walks by himself

•No more reading, even if there is comprehension doesn't understand "mechanics" of using a book

•No more telephone conversations, just listens when I am taking and he is on the other phone

•No more looking through and appreciating architecture picture books

•Doesn't seem to get much out of his daily read of The New York Times or magazines

•Forgets to put on his reading glasses when trying to read or gets them on upside down

•Has trouble following me so I have taken to holding his hand on the street

•Got lost the other night when following me down the condo hallway towards the elevators

•Cannot use the house phone or his cell phone

•Often cannot figure out how to open a door by pushing or pulling or use his key

•Hasn't been able to use a computer for a while now

•Doesn't realize he is thirsty but I can tell by the movement of his lips in a certain unconscious way

I do not want to make our situation seem more difficult than it is but I don't want to gloss over what I go through 24/7/365. I cannot imagine for sure what Gregory must be feeling or thinking. Previously he was happy and content, now he seems more agitated. It seems to be getting a lot worse on a daily basis.

You cannot imagine what I go through as his caregiver and at times I cannot imagine what I am going through because the situation becomes quite bizarre and changes so quickly. Often I cannot fathom the behavior Gregory presents let alone know how to deal with it.

A little bit of positive:

We wake up each day, somehow renewed, and sally forth to meet the day

While a struggle, we still go to movies, opera, musicals, and legitimate theater

He goes shopping for groceries  and runs errands with me

He tries to read (or at least look at) the New York Times

I read aloud to him at night before we go to bed

We eat out and he enjoys good food (when he can figure out how to eat it)

I enjoy cooking dinners home and he enjoys eating them

He enjoys being with friends and family (even though quiet and distant at times)

He enjoys painting almost every Tuesday with his teacher Nancy http://www.nrosen.com

He enjoys spending being with his "Companion," Alaksh.

Our two kitties (now cats) Gigi and Emms are the love of his life

We both sleep well

We are both healthy

We both love the condo and how we live in it physically

We have good neighbors, friends, and family

We snuggle often

We hug and kiss

He still tells me he loves me

And I tell him that I love him.

NOT easy for us to be going through this, NOT easy for you to read about it.

You may be thinking: 1) "How do I reply to an e-mail like this?" and/or 2) "How can I help?" 

Easy stock answers that we are OK with:

1) Hit COMMENT and let us know you received this. You can empathize with us and think of us. You do not need to make any further comment and there is probably nothing you could say except that you love us.

2) Know that just by being there, and by being you, by respecting us, and by being patient with both Gregory and me when we do get together ... you are helping already. So thank you.

We love you.

Michael and Gregory

P.S. This is a direct link to photographs of Gregory's paintings for 2012/13.

https://plus.google.com/photos/105807529710777221472/albums/5948444230716235857

(Photo 2012)