This Alzheimer's BLOG receives between 50 and 100 hits a day. Out of some 36,000 hits in the four years since its beginning, there have been 265 comments for a .7% reply rate. But you know what, comments are not expected and notoriously absent when anyone who is a blogger is asked about their experience with comments.
As you know, I do not write for the comments. I write to process my grief and my joy, I write to share our situation with friends and family, I write in case my experiences and observations and insights might help others who are grieving.
We all grief when someone we love is experiencing any terminal, incurable illness. But the way Alzheimer's presents itself is more insidious than only a few other illnesses out there and therefore more painful for both the ones ill and the ones loving and caring for those ill.
Periodically I will run into someone who follows this BLOG and they will tell me how much it means to them or what an inspirational role model I am. This happened on Friday when I was at the Lyric Opera of Chicago's costume sale and I ran into one of the women who sings in the chorus. (Thanks CL!) We exchanged no fewer than three meaningful hugs :-)
Again, while I do not write for the celebrity, and while I know I am doing a good job caring for Gregory, it does make me feel good to hear from others who agree. Being a caregiver for someone you love so much is a heavy, lonely occupation and sharing that love with others and hearing their message helps me to feel lighter!
P.S. Over the last 15 or so years, being in 20 or so operas; many of the people at the opera house have become acquaintances, friends, and family at various levels. I appreciate and value them. I keep up with many of them via Facebook. I haven't been able to be in any operas for three or four years as I could not leave Gregory alone but now that he is safely ensconced at The Lieberman Center, I hope to get cast in an opera this season, or maybe next.
Showing posts with label Insidious. Show all posts
Showing posts with label Insidious. Show all posts
Sunday, September 7, 2014
Monday, June 17, 2013
Horoscopes and Breakdowns
June 17, 2013
Aries (3/21-4/19)
No one -- not even you -- can be selfless and generous all the time! It's okay to mix a few selfish acts in with your good deeds today. Don't do anything too egomaniacal -- just put yourself first a few times when you usually wouldn't. This isn't an excuse to forget your manners -- you should still hold the door for old ladies, and say 'please' and 'thank you' -- but it is a reminder that you need to treat yourself like the star you are a little bit more often.
• • • • •
While it is hard to say this horoscope is meant for me alone (how many people in the world were born between March 21 and April 19?) it does apply.
Last night I cried myself to sleep wondering how I look to the rest of the world. Strong? Together? Even? Supportive? Loving? Giving? While recognizing those adjectives as part of who I am, I was not feeling them. I was sad, lonely, and feeling devastated as I walk along with Gregory and his Alzheimer's - every morning, every day, every night.
No one really to turn to in the hopes of making "it" go away. The Alzheimer's? The feelings? The tears? Last night, I just needed to cry, to howl. I needed someone with whom could cry but not someone who would try to comfort me for there is no comforting in dealing with this INSIDIOUS disease.
In some ways, even with loving family and friends, there is no one there for me since the only one who truly matters is Gregory, my life and soul mate of 35+ years, and he is less and less available. To himself? To me?
He seems content, happy, loved. He bumbles along day to day in a good mood, laughing at his inabilities. When I am at my grumpiest, he forgives me or lets me know that my role on the path is a difficult one. He appreciates me, he loves me.
So last night through my tears I heard a voice in my head say, "Tomorrow you die." No not death, but another part of my life gone as I re-evaluate Gregory's needs and try to accommodate them. Accommodate them not in what I consider my recently, once again gruff, impatient, angry way but only with patience and love.
Instead of treating him like an invalid, which I have been avoiding although sometimes without the use of language that is all that is left, I will be there to assist him for what might be or feel like 24/7.
For example when I tell him at bedtime that it is time to brush his teeth, I usually go about the own business of closing up the house and getting the cats and myself ready for bed. Now I will wait to help him find his toothbrush (if he can't this time) and put the toothpaste on the toothbrush (if he can't this time) and run just a little water on the toothbrush to wet it (if he can't this time) and then make sure he knows how to get it into his mouth to begin brushing (if he can't this time) and when he is completely, and successfully brushing his teeth, I'll look back to my own needs.
And so tomorrow I die.
This process is the same for almost every life skill that Gregory attempts. Recently, at bedtime, he had on his shorts but not T-shirt (which I always put in the bathroom and announce, "Your night clothes are in the bathroom.") Having come into the bedroom without his T-shirt, he no longer knew where it was or even that he needed the shirt ... just that something is wrong.
Another time, when he was getting his night shorts and shirt on, I come back into the room to find him with his feet through the arm holes of his T-shirt trying to pull the body of the shirt up around his bottom.
After my having taken the time to get his "stuff" and putting it in the bathroom for him and letting him know where the "stuff" is, you can see why I get a little frustrated (angry?) that even with all my help, it isn't working! And not only the anger but also the fear and worry about what the future will bring (although I try so hard not to worry about the future since I really cannot control it.) "Don't worry about those things you can control and don't worry about those things you cannot!" A Buddhist saying.
Having to do EVERYTHING for us, you can see how easily it is to fall into the frustrated, angry, gruff, impatient, fearful mode.
With Ken, Gregory's companion living with us since April, my life has been a bit easier. But Ken will be leaving at the end of June to go back to Japan and then return to Vanderbilt University to begin his Master's Degree. So last night, I was also grieving not only Gregory but also our loss when we send Ken on his way. We have come to love that man with his gentle, loving, respectful, helpful ways!
So tomorrow I die but know that somehow I will survive. In last night's grief then, I realized that the next step has to be follow through, follow through, follow through. Not on Gregory's part because he is no longer able, but on mine.
When I hand him his vitamins and medications I will wait there until he knows how to begin taking them. When I tell him to "fill your pockets" with wallet, keys etc, I will wait there until he begins doing so (and I will double check after while that he got everything he needed.) I will no longer ask him to wait in the car when I have to run into the drug store for a quick purchase, I will have him come with me. Recently he got out of the car and came into the store looking for me.
These activities and follow throughs will be difficult for me and I will have to learn how to attend with patience and love but they are a necessary next step. And like other "next steps" once I have mastered the step, I feel better able to cope, am less angry, less frustrated.
The additional energy I have to spend in support of Gregory's daily needs is made up for by the less emotional energy I have to spend on anger, frustration, fear, guilt, etc etc etc. So tomorrow I die, but I am also reborn and continue on the path.
From the New York Daily News, January 1, 2013:
Last night I cried myself to sleep wondering how I look to the rest of the world. Strong? Together? Even? Supportive? Loving? Giving? While recognizing those adjectives as part of who I am, I was not feeling them. I was sad, lonely, and feeling devastated as I walk along with Gregory and his Alzheimer's - every morning, every day, every night.
I don’t expect you to comprehend this life we’ve been forced to lead; however, I do expect and need your understanding. I want to be treated as normally as possible with the knowledge that my life has been turned upside down. The love of my life is dying before my very eyes. Each day he dies a little more. I’m in a continuous state of grief. It is like having a funeral every day of my life. I try to spare you my pain, but it’s there. If our lifestyle appears to be the same to you, I’m doing a good job of camouflage. I do what I do for Gregory, for myself, and for you.
Michael Horvich (2006)
No one really to turn to in the hopes of making "it" go away. The Alzheimer's? The feelings? The tears? Last night, I just needed to cry, to howl. I needed someone with whom could cry but not someone who would try to comfort me for there is no comforting in dealing with this INSIDIOUS disease.
In some ways, even with loving family and friends, there is no one there for me since the only one who truly matters is Gregory, my life and soul mate of 35+ years, and he is less and less available. To himself? To me?
He seems content, happy, loved. He bumbles along day to day in a good mood, laughing at his inabilities. When I am at my grumpiest, he forgives me or lets me know that my role on the path is a difficult one. He appreciates me, he loves me.
So last night through my tears I heard a voice in my head say, "Tomorrow you die." No not death, but another part of my life gone as I re-evaluate Gregory's needs and try to accommodate them. Accommodate them not in what I consider my recently, once again gruff, impatient, angry way but only with patience and love.
Instead of treating him like an invalid, which I have been avoiding although sometimes without the use of language that is all that is left, I will be there to assist him for what might be or feel like 24/7.
For example when I tell him at bedtime that it is time to brush his teeth, I usually go about the own business of closing up the house and getting the cats and myself ready for bed. Now I will wait to help him find his toothbrush (if he can't this time) and put the toothpaste on the toothbrush (if he can't this time) and run just a little water on the toothbrush to wet it (if he can't this time) and then make sure he knows how to get it into his mouth to begin brushing (if he can't this time) and when he is completely, and successfully brushing his teeth, I'll look back to my own needs.
And so tomorrow I die.
This process is the same for almost every life skill that Gregory attempts. Recently, at bedtime, he had on his shorts but not T-shirt (which I always put in the bathroom and announce, "Your night clothes are in the bathroom.") Having come into the bedroom without his T-shirt, he no longer knew where it was or even that he needed the shirt ... just that something is wrong.
Another time, when he was getting his night shorts and shirt on, I come back into the room to find him with his feet through the arm holes of his T-shirt trying to pull the body of the shirt up around his bottom.
After my having taken the time to get his "stuff" and putting it in the bathroom for him and letting him know where the "stuff" is, you can see why I get a little frustrated (angry?) that even with all my help, it isn't working! And not only the anger but also the fear and worry about what the future will bring (although I try so hard not to worry about the future since I really cannot control it.) "Don't worry about those things you can control and don't worry about those things you cannot!" A Buddhist saying.
Having to do EVERYTHING for us, you can see how easily it is to fall into the frustrated, angry, gruff, impatient, fearful mode.
With Ken, Gregory's companion living with us since April, my life has been a bit easier. But Ken will be leaving at the end of June to go back to Japan and then return to Vanderbilt University to begin his Master's Degree. So last night, I was also grieving not only Gregory but also our loss when we send Ken on his way. We have come to love that man with his gentle, loving, respectful, helpful ways!
So tomorrow I die but know that somehow I will survive. In last night's grief then, I realized that the next step has to be follow through, follow through, follow through. Not on Gregory's part because he is no longer able, but on mine.
When I hand him his vitamins and medications I will wait there until he knows how to begin taking them. When I tell him to "fill your pockets" with wallet, keys etc, I will wait there until he begins doing so (and I will double check after while that he got everything he needed.) I will no longer ask him to wait in the car when I have to run into the drug store for a quick purchase, I will have him come with me. Recently he got out of the car and came into the store looking for me.
These activities and follow throughs will be difficult for me and I will have to learn how to attend with patience and love but they are a necessary next step. And like other "next steps" once I have mastered the step, I feel better able to cope, am less angry, less frustrated.
The additional energy I have to spend in support of Gregory's daily needs is made up for by the less emotional energy I have to spend on anger, frustration, fear, guilt, etc etc etc. So tomorrow I die, but I am also reborn and continue on the path.
• • • • •
From the New York Daily News, January 1, 2013:
- Year ahead: This is a year of personal transformation, and a time when you will feel compelled to review, reassess and restructure your life on many levels. At some stage you can feel cut off from the support you have become used to having and forced to be more self-sufficient, particularly on a monetary level. The role other people play in your life will be highlighted with you realizing their contribution to your life and you in theirs. Your home life takes on a greater level of importance, and you will desire to settle down on a more permanent basis and have more stability and security in your life. Personal growth: Over this year, your world view will continue to expand with you letting go of prejudices you once had and replace them with a broader more accepting view of yourself as well as those you come in contact with. Romantic month: Jupiter the planet of expansion enters your solar fourth House of home and family on June 26th, and stays there until July 2014, a period where you can make favorable changes in your personal life. Power month: March, a positive change in your career can move forward and a personal situation gains momentum to move to the next phase. Your annual new Moon is April tenth, which is the commencement of your next solar cycle. Angel advice: The structure of your life, as well as your values and beliefs, will be challenged this year. As you question the meaning of life and how purposeful your life is, it is important to be open to change and see any forced or unexpected changes in your life as the universe’s way of steering you back on the path you are destined to walk.
- Love, family, friendship: With Jupiter shining its beneficial rays on your personal life from midyear, your focus will be on family and your home environment. The full Moon three months beforehand on March 27th, can provide the energy to be the catalyst to jolt a relationship into reality with a purposeful decision being made, even though plans may not eventuate until later in the year around July or August. There is very much an essence of fate around your love life this year, if it is meant to be there is nothing you can do to stop love from capturing your heart. It can sneak up on you and all of a sudden your life can be different from what it has ever been. Setting up home so you have comfortable surroundings for you and your family will also be high priority this year. You will be conscious of developing healthy bonds with family members and adhere to a schedule of regular contact to stay closely connected with those you love. Friends can suddenly leave your life, for no other reason than you are travelling on different journeys as you seek where you fit within the big picture of life. The first half of the year can present situations you feel impatient about. The second half sees you more relaxed and satisfied as you have a vision of where your life is heading, and although there are compromises to make, you will feel what you give is well worth what you receive in return.
- Career, money, purpose: It is no longer an option for you to go through the paces at work. Over this very important phase with transformational planet Pluto in your solar tenth House of work and purpose right through to the end of 2024, you will strive to make a positive and substantial contribution to the world through your career and business dealings. You now need your career to be more meaningful and to achieve this, some of you will change your career, and others will put more focus on aligning your work with your overall goal of excelling at what you do. Your ambition will be heightened over this period; however, be careful you aren’t too impulsive about changing your path, as a rash move can cause setbacks. It is advisable to think through all the pros and cons of a new endeavor to ensure it is what you truly want to do on a long-term basis before you put action to your thoughts. Ethics and the way you morally handle your business also come into play and at all times it will be best to take the high road, regardless of the actions of others. At the end of December 2012 a fortunate transit occurred with your professional life that can provide a financial bonus. The ongoing challenging squares between planet of sudden changes Uranus and power planet Pluto affecting your career life continue through to early 2015, with two direct degree hits this year on May 21st and November first. If you have not made a considerable change to live a life of purpose by November, a fateful event is very likely. Destiny will take matters out of your hands and place you where you should be. This is a transformational year on many levels, which promises to be eventful to say the least.
Tuesday, March 19, 2013
One Word at a Time
My vow of silence lasted one and one half days. It was terminated sooner than I had hoped but did serve the purpose of calming me down. Also, as Gregory regained his health, his daily functioning improved somewhat. Another lesson learned for the future.
Then I got the same flu he had (not a bad) and was forced to take care of myself a little more than taking care of him. I did get him to sit on the toilet every two hours (with success) and prepared his meals. I was forced to "calm down" even more by my being ill.
After the first day of silence, I decided that perhaps a next step would be ONE WORD AT A TIME. Since complex directions, statements, or questions confuse him, maybe one word communications would help. It didn't.
As he was leaving the bathroom and I was in bed not feeling well, I said, "Light." meaning please turn off the bathroom light. He was not able to connect the word "Light" with the room he was in. So I added, "Bathroom." Still no connection. Led to "Bathroom light." Still no connection with asking him to turn off the light as he was leaving the bathroom. So I finally gave up on the "One Word" concept and asked, "Please turn off the bathroom light?" He did.
The one word thing about Alzheimer's? "Insidious" and it always wins no matter how closely you follow or create the rules!
Then I got the same flu he had (not a bad) and was forced to take care of myself a little more than taking care of him. I did get him to sit on the toilet every two hours (with success) and prepared his meals. I was forced to "calm down" even more by my being ill.
After the first day of silence, I decided that perhaps a next step would be ONE WORD AT A TIME. Since complex directions, statements, or questions confuse him, maybe one word communications would help. It didn't.
As he was leaving the bathroom and I was in bed not feeling well, I said, "Light." meaning please turn off the bathroom light. He was not able to connect the word "Light" with the room he was in. So I added, "Bathroom." Still no connection. Led to "Bathroom light." Still no connection with asking him to turn off the light as he was leaving the bathroom. So I finally gave up on the "One Word" concept and asked, "Please turn off the bathroom light?" He did.
The one word thing about Alzheimer's? "Insidious" and it always wins no matter how closely you follow or create the rules!
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