FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Sunday, August 30, 2015
If you are interested, I have available for purchase two self-published books of poetry in which many of the poems are informed by Gregory and my journey with Dementia/ Alzheiemr's. See the side bar of this blog for a direct link to "peek inside" and/or to purchase.
Saturday, August 29, 2015
Friday, August 28, 2015
In many ways the fact that Gregory and I are a same sex couple seems to disappear as you realize that ours is a story of two people in love, family friends or whomever, who care for each other and have been journeying through Dementia/ Alzheimer's on what often seems like a run-away roller-coaster ride, "The Three R's."
Having said that, however, I also need to say that in my research on the internet I find that there is very little, if nothing, out there dealing with GLBTQ couples who are dealing with the issue of living with Dementia/ Alzheimer's or loving someone who is living with it. That makes me sad and seems to make my work at blogging all the more important.
Finally, I would ask you to share the blog's address with anyone and everyone who you think might benefit from Gregory and my journey and to comment now and then if only to say, "Hi. We are out here!"
Thanks and Namaste,
Michael and Gregory
Thursday, August 27, 2015
Often when Gregory gets a visitor he is more engaged and often will comment something like, "Oh you!" or "Wow." With Ivanka, nothing. Just stared at her then looked away then stared again and again looked away.
I could tell that Ivanka was sad, more at who Gregory is now days since she watched his decline through almost the entire period since his diagnosis. She has become family to us and over time we helped her through the loss of her husband, her brother, her nephew, and finally her mother.
I too was sad at her leaving but tried to stay cheerful and up. As we were leaving the condo to go to Gregory's, she proceeded me out the door and in a gesture which I had not seen before she crossed herself. I could feel her blessing fill the condo and her entreaty to her God to protect both Gregory and me. This is a very good woman and I will miss her very much.
Today Halina, our housekeeper from some 20+ years ago, with a 10+/- year hiatus due to her being stuck as a pedestrian by a car causing her to not be able to work for us, visited Gregory with me.
She will be back as my housekeeper now that Ivanka has left and she will also be a caregiver to Gregory for 2 or 3 days a week in addition to Manny who needs some time off because this type of work his not easy! I feel very blessed to have her back in our life and the timing couldn't be more perfect.
She really understands where Gregory is at this point in time, feels appropriately sad, but also pleased that she can be of help to us. She had worked for us for approximately 10 years and we continued to pay her weekly for a year when she was unable to work. That is what family does you know! We have kept in touch over the years and seen her now and then as well.
She interacted well with Gregory who kept looking at her on and off, not with any frightened look, and eventually he took her hand in his. I am not sure he remembers her but am sure he will get to know and like her as she spends more time with him and becomes known to him as a safe, loving friend who is there to help him.
When he would mumble to her, she responded appropriately with a nondescript, "Yes." or "Oh I see." She talked gently to him but with respect. My gut feeling is that she will do very well with Gregory and also in her interactions with Manny and the other staff at Lieberman. Being a paid caregiver is a fine line between me as her boss, staff as her fellow workers, and really her being somewhere in-between. Manny has navigated this well. Suffice it to say they are the "Good Cops" and I get to be the "Bad Cop" because I am family and that is more appropriate.
So yet another chapter in our life seems to have been arranged by the Universe. Thanks Universe;-)
Wednesday, August 26, 2015
Worrying is part of the territory… But don’t take your worry away, by taking their life away.
(Peter Watt, 2015)
They will be remembered forever.
He looked into my eyes.
He said, "I love you."
I melted and said, "I love you too."
This was yesterday. Coming from somewhere deep within Gregory and bubbling forth to let me know that he is still with me. Somehow his body and his spirit connected and the best of him shined forth and our love reached new heights. I love that man "More Than Ever!"
Tuesday, August 25, 2015
Just found out that a dear friend has been diagnosed with Dementia/ Alzheimer's. She is much older than Gregory when we received his diagnosis, and I am sorry she has to deal with this and wish her the best that can be until she decides to "go home," but it causes me to relive my sorrows of the last twelve years with Gregory and the possibilities that she and her family are just beginning to travel. So the tears.
I am honored that the family trusted me with this information and that they have enlisted my advice which I will give lovingly and freely. But I know it will bring my sorrows to the surface again as I share what I have experienced and what I believe to be true in helping my friend live as productive a life as possible. Remember, "Lie Down and Die or Hunker Down and Live!"
Utmost in my mind is the advice from my blogger friend Kate www.kateswaffer.com that one needs to continue to live as big and as loud as one can; work around the changes and not to let the diagnosis bring you down.
Monday, August 24, 2015
In the beginning I didn't even like referring to myself as a "Caregiver" because when you love someone, you do what you have to do to make your lives OK. No label needed! Next, I stared referring to my relationship with Dementia/ Alzheiemr's and Gregory as being part of a "Care Giving Team" which included both Gregory and me. I often referred to the diagnosis as "Our Diagnosis" in that while it was Gregory's illness, I have chosen to walk the path with him.
At Lieberman I am also aware of language use and will carefully, with a large smile, correct people when they use disrespectful or undermining language. For example we use "Cloth Napkins" NOT "Bibs." We use "Paper Pants" not "Diapers." Little things like this make a difference!
Here is Australia's official guidelines for Alzheimer's use language. I saw it on my friend Kate's blog. Writing as a person with Dementia, she has given me a new look, from her angle, of what a person with Dementia experiences. The blog deals becoming more Dementia/ Alzheimer's friendly. Check it out: http://kateswaffer.com/2015/08/24/first-steps-to-being-dementia-friendly/
Sunday, August 23, 2015
Friday, August 21, 2015
When all your needs are met, you can be at peace, not having to worry about them, or formulate what they are, or figure out what they might be, or seek to meet them. After living with and loving this man for over forty years, I am usually on target when thinking about what his needs are or might be.
Manny, Gregory's private care helper (to whom I attribute "Sainthood" or "Hightly Placed Angelhood") is also always attentive to making sure Gregory is comfortable, content, not hungry, well hydrated, happy, and most of all safe!
He doesn't have to worry about earning a living, cooking a meal, taking a bath, getting himself dressed, shaving, or doing the laundry. He doesn't have to make his bed, clean his room, dust, grocery shop, or take out the garbage. He doesn't have to remember important dates or be anywhere on a certain day, on time.
I think that between Lieberman, Midwest Hospice, Manny, and myself; we keep Gregory's needs met and I think that he would agree if he could!
For me, Judaism is more the cultural and traditional foundation of my childhood and therefore my adulthood, than it is a religious calling. But those traditions run deep.
Often people will offer commiseration at "how horrible Gregory's Dementia/ Alzheimer's must be for you as his life long partner." I agree it is in that I must continue to live my life while my best friend, person I love most in the world, soul mate slowly disappears and is unable to give me the support in the ways that he used to.
The tradition of singing "Dayenu" humms its melody in my head, when Gregory spontaneously (once in a while) says, "I love you," that is enough for me.
When I see him smiling, or sleeping, or laughing; that is enough for me.
Many of the residents speak Russian, or Polish, or German but often Yiddish. My childhood experiences with listening to my Grandparents and parents speak Yiddish come back to me along with the meaning of many of the expressions. Fluent speaking Yiddish, no. Use of expressions, easy.
The adults would speak in Yiddish so the children wouldn't hear. The topics were gossipy, sexy joke dirty, about the kids, etc. But guess what. The kids began to understand what the adults were saying. We had to be careful not to giggle which would give away the fact that we understood what they were saying.
Meanwhile, my one word communications with many of the residents at Lieberman bring smiles, acknowledgements, and torrents of untranslated replies to which a smile seems enough. ZieGazunt - Stay well, Be good, Good Bye. Bisel - A little. Voos Maxtu - What's new?
I am trying to learn more:
Selected Yiddish Words and Phrases - impress your friends and family
A BI GEZUNT: So long as you're healthy. Expression means, "Don't worry so much about a problem, whatever it is. You've still got your health."
ALTER COCKER: An old and complaining person, an old fart.
AY-YAY-YAY: A Joyous, or at times sarcastic, exclamation.
BALABUSTA: The wife of an important person or a bossy woman.
BEI MIR BIST DU SHAYN: To me you're beautiful.
BERRYER: Denotes a woman who has excellent homemaking skills. Considered a compliment in the pre-feminist era.
BISSEL, BISSELA: A little.
BOBBEMYSEH: Old wive's tales, nonsense.
BOYCHICK: An affectionate term for a young boy.
BROCHE: A prayer.
BUBBA: A grandmother.
BUBBALA: A term of endearment, darling.
BUPKES: Something worthless or absurd.
CHAYA: An animal. "Vilda Chaya," a wild animal, is a term used to describe unruly children.
CHAZEREI: Food that is awful, junk or garbage.
CHUTZPAH: Nerve; gall, as in a person who kills her parents and asks for mercy because she is an orphan.
DRECK: Shit. Can refer to the ugliness of objects or people.
FAYGALA: A male homosexual. (literally, little bird.)
FERBLUNJIT: Lost, mixed up.
FERCOCKT: All fucked up.
FERDRAYT: Dizzy, confused.
FARPITZS: All dressed up.
FERMISHT: All shook up, as in an acute disturbance.
FERSHTAY?: Do you understand.
FRESS: To eat like an animal, i.e., quickly, noisily, and in great quantity. (Compare with ess, to eat like a human being.)
GAVALT: A cry of fear or a cry for help. Oy Gevalt is often used as expression meaning "oh how terrible."
GAY AVEK: Go away, get out of here.
GAY GA ZINTA HATE: Go in good health. Often said in parting but can be spoken with irony to mean, "go do your own thing."
GAY SHLAFEN: Go to sleep.
GONIF: A thief, a tricky clever person, a shady character.
GOY: A derogatory term meaning gentile, goyim is the plural, and goyisher is the adjective.
GREPSE: To belch.
GORNISHT: Nothing. Often used in a sarcastic manner, as in what did you get from her? Gunisht.
HAYMISH: Informal, friendly. A haimisher mensch is someone you feel comfortable with.
HOK A CHAINIK: To talk too much, to talk nonsense.
KIBITZ: To offer comments which are often unwanted during a game, to tease or joke around. A kibitzer gives unasked for advice.
KINE-AHORA: A magical phrase to ward off the evil eye or to show one's praises are genuine and not tainted by envy.
KLUTZ: An awkward, uncoordinated person.
KOSHER: Refers to food that it prepared according to Jewish law. More generally kosher means legitimate.
KVELL: To beam with pride and pleasure, Jewish parents are prone to kvell over their children's achievements.
KVETCH: To annoy or to be an annoying person, to complain.
LOCH IN KOP: Literally a hole in the head, refers to things one definitely does not need.
LUZZEM: Leave him be, let her or him alone.
MACH SHNEL: Hurry up.
MACHER: An ambitious person; a schemer with many plans.
MAVEN: An expert, a connoisseur.
MAZEL TOV: Good luck, usually said as a statement of support or congratulations.
MEESKAIT: A little ugly one; a person or thing.
MEGILLAH: Long, complicated and boring.
MENSCH: A person of character. An individual of recognized worth because of noble values or actions.
MESHUGGE or MESHUGGINA: Crazy.
MISHEGOSS: Inappropriate, crazy, or bizarre actions or beliefs.
MISHPOCHA: Family, usually extended family.
NACHES: Joy. To "shep naches" means to derive pleasure. Jewish children are expected to provide their parent with naches in the form of achievement.
NARRISHKEIT: Foolishness, trivia.
NEBBISH: An inadequate person, a loser.
NOODGE: To bother, to push, a person who bothers you.
NOSH: To snack.
NU: Has many meanings including, "so?; How are things?; how about it?; What can one do?; I dare you!"
NUDNIK: A pest, a persistent and annoying person.
ONGEPOTCHKET: Messed up, slapped together without form, excessively and unesthetically decorated.
OY-YOY-YOY: An exclamation of sorrow and lamentation.
OY VEY: "Oh, how terrible things are".
PISHER: A bed-wetter, a young inexperienced person, a person of no consequence.
PLOTZ: To burst, to explode, "I can't laugh anymore or I'll "plotz." To be aggravated beyond bearing.
POTCHKA: To fool around; to be busy without a clear goal.
PUPIK: Belly button.
PUTZ: A vulgarism for penis but most usually used as term of contempt for a fool, or an easy mark.
SAYKHEL: Common sense.
SCHLOCK: A shoddy, cheaply made article, something thats been knocked around.
SCHMALTZ: Literally chicken fat. Usually refers to overly emotional and sentimental behavior.
SCHMUCK: A vulgarism for penis, strong putdown for a jerk, a detestable person.
SHADKHEN: a professional matchmaker.
SHANDA: A shame, a scandal. The expression "a shanda fur die goy" means to do something embarrassing to Jews where non-Jews can observe it.
SHAYGETS: A gentile boy and man, also means a clever lad or rascal.
SHAYNER: Pretty, wholesomely attractive, as in shayner maidel (woman.)
SHIKSA: A gentile girl or woman.
SHLEMIEL: A dummy; someone who is taken advantage of, a born loser.
SHLEP: To carry or to move about. Can refer to a person, a "shlepper," who is unkempt and has no ambition.
SHLIMAZL: A chronically unlucky person, a born loser, when a shlimazl sells umbrella the sun comes out.
SHMENDRICK: A weak and thin pipsqueak. The opposite of mensch, a a physically small shlemiel.
SHMEGEGGE: A petty person, an untalented person.
SHMATTA: A rag, often used as a putdown for clothes of the unfashionably dressed.
SHMEER: To spread as in to "shmeer" butter on bread. Can also mean to bribe and can refer to the "whole package", as in I'll accept the whole shmeer.
SHMOOZ: To hang out with, a friendly gossipy talk.
SHNORRER: A begger, a moocher, a cheapskate, a chiseler.
SHNOZ: A Nose. Jimmy Durante was known as a the great shnoz.
SHTETL: A Jewish ghetto village.
SHTIK: A stick or thing. Often refers to an individual's unique way of presenting themselves, as in "She is doing her shtik."
SHTUNK: A stinker, a nasty person or a scandalous mess.
SHTUP: An expression for sexual intercourse, to "screw."
SHVITZ: To sweat, also refers to a Turkish bath house. A shvitzer means a braggart, a showoff.
SHVANTZ: A word for penis.
SPIEL: To play, as in to play a game.
TCHOTCHKA: An inexpensive trinket, a toy. Can also mean a sexy but brainless girl. The affectionate diminutive is tchotchkala.
TSETUMMELT: Confused, bewildered.
TSIMMES: A side dish, a prolonged procedure, an involved and troubling business, as in the phrase, "don't make a tsimmes out of it."
TSORISS: Suffering, woes.
TUCHES: Backside, ass, "tuches lecker" means ass kisser, one who shamelessly curries favor with superiors.
TUMMEL: Noise, commotion, disorder.
VER CLEMPT: All choked up.
VUS MACHS DA: What's happening? What's up?
YENTA: A busybody, usually refers to an older woman.
YENTZ: Course word for sexual intercourse. Also means to cheat or screw someone. Yentzer is the noun.
ZAFTIG: Juicy, plump. Can refer to food, ideas or people. A buxom woman.
ZIE GA ZINK: Wishing someone good health.
ZETZ: A strong blow or punch.
ZEYDE: Grandfather, or old man.
ZHLUB: An insensitive, ill-mannered person, a clumsy individual.
Wednesday, August 19, 2015
Click link below to read entire article. In summary:
Dementia is an umbrella term (and is not the same as Alzheimer’s)
Certain words, like 'dementia sufferer', do not help
Not all people with dementia are old
Dementia is not a mental health issue
Sensationalism and wonder cures give false hope