In some ways the kind of reassurance I use with my partner who has Alzheimer's/Dementia is the same kind I have always used. I am loyal and supportive of him and his needs. I am respectful and kind. Not a day goes by that we do not profess our love for each other and count our blessings (spiritual ones ... not religious.) We hold hands in the movies, at the opera, and during a play or musical. My hand is on his knee when we watch TV and often his on top of mine. When he apologizes for a difficult time I make sure I tell him "the difficulties do not matter, I love you." When he reaffirms his love for me, I graciously accept. When necessary I assure him that I always have and always will love him and be here for him. Sometimes I have to quietly regroup and regain my emotional balance before I can do these things, but I (and we) always arrive at acknowledging our love for each other no matter what this roller coaster of an insidious disease may bring. I think that the repetition over a day and over a week and over a life time is what makes this work for us.
Thursday, May 31, 2012
Tuesday, May 29, 2012
Daily Affirmation
My friend Pat gave me an antique punch block which contains daily affirmations. Todays is: My heart is a lighthouse through which I can navigate the fog. Fitting.
The picture below is a facsimile of one you might recognize from your past if you are as old as I am.
The picture below is a facsimile of one you might recognize from your past if you are as old as I am.
Saturday, May 26, 2012
BECAUSE
Today, surreptitiously observing, I read a cookbook while Gregory was making his breakfast. He was trying to use the "map" I created to help him with the task. It was not a success. On and off he has been able and not able to make his own breakfast. Most often it was 60-75% correct, me helping with the rest. Several times I have decided that it was time for me to take over making his breakfast BECAUSE it was easier to just do it for him compared to trying to explain what he needed to do. Most often the explanations didn't work so I did what needed to be done. Several times without saying anything I let him try again and several times did so BECAUSE he asked to try again.
Here is the detail of why I have once again decided that I should make his breakfast. It is somewhat of a complicated job but BECAUSE he likes his breakfast, "throwing some toast" at him would never do. BECAUSE he cannot accomplish the "routine" it is now one more thing I have added to my load.
Maybe after watching him this time I am ready to accept this next responsibility. I told him that maybe I should take over making his breakfast BECAUSE in watching I noticed that he was having a lot of difficulty and that it was painful for me to watch his suffering through the process. He agreed and said, "Yes maybe it is time." This is the first time that he has agreed with such commitment.
THE DETAIL: Tea
He got out the loose tea but didn't know what to do with it BECAUSE there was no tea ball. He figured out what was wrong, got the tea ball and filled it with the loose tea. It still didn't seem quite right to him BECAUSE he had forgotten to put the usual placemat on his tray. He was still confused about the tea BECAUSE what he was missing was a mug in which to put the tea ball. I gently suggested that he needed a mug for the tea.
THE DETAIL: Cereal
He got a mug and cereal bowl out of the cabinet and put them on the tray. The tea ball never got into the mug BECAUSE he was distracted when he next got a box of cereal from the cabinet and after studying it for a while, instead of pouring a portion into the bowl, he scooped with his hands.
THE DETAIL: Fruit
He got the cantaloup out of the refrigerator, cut three pieces, cleaned the seeds, and sliced the melon into his cereal. No help need here.
THE DETAIL: Bran Buds
Next he got out the plastic box filled with Bran Buds. He opened the box, handled the scoop, looked at the box, handled the scoop. Tried to scoop the box lid and finally put the box down BECAUSE it wasn't working. Next he noticed the label (which was turned away from him) on the box and commented to himself, "Oh that makes it easier." Maybe he didn't realize that he did in effect have the bran buds in hand? So he picked up the box, put the scoop back into the box, and closed the lid BECAUSE he thought he had added some to his cereal (which he hadn't.) I intervened.
THE DETAIL: Turkey Sausage
Next task was to microwave the turkey sausage. He remembered to get a plate this time, a paper towel, and a package of sausage out of the freezer. He unwrapped the sausage and placed them on the plate.
It wasn't quite right BECAUSE he had put the paper towel down on the tray and by now had forgotten that it was supposed to be on the plate with the sausage. I mentioned the paper towel, he realized that it was missing, found it, folded it in half and placed the plate into the fold BECAUSE he really didn't understand the necessary order.
I helped him place the sausage between the folds of the paper towel and then put the paper towel on the plate. He asked, "How long?" BECAUSE after countless years of making his own breakfast sausage he didn't remember. "Two minutes." He was able to follow through.
When the sausage had cooked, he took the plate out of the microwave (which is almost but not quite too hot to handle.) He danced around with the hot plate and then, BECAUSE he finally noticed that the placemat was not on the tray, didn't know what to do with the plate. He asked my help but I just watched. After a while of "dancing" he finally placed the plate on the counter.
THE DETAIL: Putting It All Together
He just stood there not knowing what to do next. I got up and verbalized what I was doing, BECAUSE somehow it seems to defuse the situation, as I fetched the placemat and put it on the try, filled the electric tea kettle (which he had totally overlooked) and turned it on, put his cereal bowl and mug in place, put the tea ball into the mug, put the sausage plate on the tray, got him a spoon and napkin and finally filled his mug with boiling water and replaced the kettle. End of story, beginning of breakfast.
The detail is important to share with you BECAUSE it shows how complicated the task is for Gregory while maybe not so much to you or I, how easily it is for him to get distracted, and how difficult it is for him to follow through with multiple-step processes.
Here is the detail of why I have once again decided that I should make his breakfast. It is somewhat of a complicated job but BECAUSE he likes his breakfast, "throwing some toast" at him would never do. BECAUSE he cannot accomplish the "routine" it is now one more thing I have added to my load.
Maybe after watching him this time I am ready to accept this next responsibility. I told him that maybe I should take over making his breakfast BECAUSE in watching I noticed that he was having a lot of difficulty and that it was painful for me to watch his suffering through the process. He agreed and said, "Yes maybe it is time." This is the first time that he has agreed with such commitment.
THE DETAIL: Tea
He got out the loose tea but didn't know what to do with it BECAUSE there was no tea ball. He figured out what was wrong, got the tea ball and filled it with the loose tea. It still didn't seem quite right to him BECAUSE he had forgotten to put the usual placemat on his tray. He was still confused about the tea BECAUSE what he was missing was a mug in which to put the tea ball. I gently suggested that he needed a mug for the tea.
THE DETAIL: Cereal
He got a mug and cereal bowl out of the cabinet and put them on the tray. The tea ball never got into the mug BECAUSE he was distracted when he next got a box of cereal from the cabinet and after studying it for a while, instead of pouring a portion into the bowl, he scooped with his hands.
THE DETAIL: Fruit
He got the cantaloup out of the refrigerator, cut three pieces, cleaned the seeds, and sliced the melon into his cereal. No help need here.
THE DETAIL: Bran Buds
Next he got out the plastic box filled with Bran Buds. He opened the box, handled the scoop, looked at the box, handled the scoop. Tried to scoop the box lid and finally put the box down BECAUSE it wasn't working. Next he noticed the label (which was turned away from him) on the box and commented to himself, "Oh that makes it easier." Maybe he didn't realize that he did in effect have the bran buds in hand? So he picked up the box, put the scoop back into the box, and closed the lid BECAUSE he thought he had added some to his cereal (which he hadn't.) I intervened.
THE DETAIL: Turkey Sausage
Next task was to microwave the turkey sausage. He remembered to get a plate this time, a paper towel, and a package of sausage out of the freezer. He unwrapped the sausage and placed them on the plate.
It wasn't quite right BECAUSE he had put the paper towel down on the tray and by now had forgotten that it was supposed to be on the plate with the sausage. I mentioned the paper towel, he realized that it was missing, found it, folded it in half and placed the plate into the fold BECAUSE he really didn't understand the necessary order.
I helped him place the sausage between the folds of the paper towel and then put the paper towel on the plate. He asked, "How long?" BECAUSE after countless years of making his own breakfast sausage he didn't remember. "Two minutes." He was able to follow through.
When the sausage had cooked, he took the plate out of the microwave (which is almost but not quite too hot to handle.) He danced around with the hot plate and then, BECAUSE he finally noticed that the placemat was not on the tray, didn't know what to do with the plate. He asked my help but I just watched. After a while of "dancing" he finally placed the plate on the counter.
THE DETAIL: Putting It All Together
He just stood there not knowing what to do next. I got up and verbalized what I was doing, BECAUSE somehow it seems to defuse the situation, as I fetched the placemat and put it on the try, filled the electric tea kettle (which he had totally overlooked) and turned it on, put his cereal bowl and mug in place, put the tea ball into the mug, put the sausage plate on the tray, got him a spoon and napkin and finally filled his mug with boiling water and replaced the kettle. End of story, beginning of breakfast.
The detail is important to share with you BECAUSE it shows how complicated the task is for Gregory while maybe not so much to you or I, how easily it is for him to get distracted, and how difficult it is for him to follow through with multiple-step processes.
Thursday, May 24, 2012
Companion Agreement
Just to keep you up to date, here is a revised copy of the agreement I am using with Gregory's Companion. I now have two young men to support us. Ben spent three hours with Gregory a few days ago and it was quite successful. Only two texts and one phone call solved any unique problems (which were quite minor.) Just finished interviewing Ken who I believe will work out well. In some ways by guaranteeing these two young men 4-8 hours per week, I am assuring them a steady (all be it minimal) income and I am forcing myself to use their services and get away from my recent 24/7 responsibilities as a care giving partner to Gregory. Will keep you up on how things go.
AS OF MAY 18, 2012
COMPANION to Gregory
INTRODUCTION
This role is to be a COMPANION to Gregory who has been diagnosed with Young Onset Alzheimer’s Disease.We have been coping with this for close to ten years now and while Gregory is very healthy and still fairly independent, he has begun to fail enough that I feel a "companion" would help to make our life easier and Gregory’s safer as well as allow me to continue with my responsibilities away from home.
At this point in time he has difficulty with language and cognition. His life skills are at best sufficient. At times he gets confused and is unable to take care of himself. For example I have been helping him put together his breakfasts and sometimes his lunch while at other times he does well by himself.
He doesn't always know what clothes to choose to reflect the season or weather. He used to go for long walks by himself, never got lost, but recently got lost in our condo building when trying to return a shopping cart to the lobby.
I remind him periodically, and especially before we go out, to make sure he uses the restroom. He easily gets confused especially when unexpected or unusual situations occur, for example if he was home alone when the building’s emergency system announces an evacuation.
At times it is difficult to know what he understands and what he THINKS he understands. For example you say turn OFF the light, and he will say OK and turn it ON.
It would be in the best interests of all parties for the Companion to have some
knowledge of Dementias and or to do some reading on the subject before and during the period of employment.
COMPANION AGREEMENT
This Agreement is effective as of _________________, between Michael, “ORGANIZER” of this Agreement and partner to Gregory “CLIENT,” and _________________________________________________, “COMPANION.”
JOB DESCRIPTION:
Gregory (and I) need to have a companion with whom he can spend time while I am away. Sometimes it will be for a few hours and sometimes it will be for a morning, afternoon, or evening. The Companion and Client can stay home, go places, eat out, cook at home, watch TV or a DVD, go to a movie, grocery shop with a list from me, swim at LA Fitness, do a jig saw puzzle, or just “be quiet together.”
The student/companion can do his homework while Gregory is working on his activities, napping, or reading but for the most part should be available to interact with Gregory according to Gregory’s needs. As necessary, the companion will answer simple questions, give simple directions, and depending on the time of day help with Gregory’s getting dressed or getting ready for bed.
Some help with simple meal preparation might take place - like making a sandwich or salad or warming up a dinner I've prepared. After conferring with the Organizer, the companion could be more ambitions with meals if he/she desired. At times eating lunch or dinner at a neighborhood restaurant will be good. Meals will be provided for the companion, at home or out, when the client takes a meal.
The type of person who would be ideal for this position must be "gay friendly," intelligent, sensitive to Alzheimer's needs, trustworthy. In turn we can offer an "interesting" experience with a kind, gentle, loving family in a clean, comfortable, attractive, intellectual environment/home setting.
MOST IMPORTANTLY the companion will be responsible for Gregory's SAFETY and WELL BEING as well as insuring and respecting Gregory’s sense of self and worth. A balance will need to be insured between being responsible and making decisions for Gregory but not treating him like a child.
The companion and Gregory will have to be together at all times while outside the home (for example waiting outside the bathroom at the movies rather than letting Gregory alone while the companion remains at the seats.) At home they can be in separate parts of the condo unit.
At this time the companion will NOT be responsible for any medical or bodily function type of care but might have to "suggest" to Gregory the steps in cleaning himself up if he spills on his shirt or slightly messes his pants (rarely happens but has been known to.)
For the most part, I do not see the role of companion to Gregory as any more major than that of a friend dropping by for a visit or taking him out to dinner while I am not at home. The key factor in the companion’s responsibilities and of utmost importance, is G's safely and with support in the areas of cognitive ability and life skill functioning, provided in a respectful way.
Whenever the Companion is unsure of what to do, he/she should text or call the Organizer on his cell phone: . In case of emergency the Companion should take necessary actions and then notify the Organizer.
DUTIES:
The Companion agrees to perform faithfully, industriously, and to the best of his/her ability, experience, and talents, all of the duties that may be required by the express and implicit terms of this Agreement, to the reasonable satisfaction of the Organizer. Such duties shall be provided at such place(s) as the needs may require from time to time, variously including (our address) and the surrounding Evanston, neighborhood. Travel outside of Evanston should NOT take place. Transportation in any vehicle should NOT take place.
STIPEND:
A stipend of $10.00/arranged hour will be paid to the Companion in cash at the end of each round of duty. In the event of expenses like sharing a movie or dinner out, the Companion’s way will be paid. No other responsibilities will be taken on by the Organizer nor benefits given the “Companion.”
REIMBURSEMENT:
The Organizer will reimburse the Companion for agreed upon “out-of-pocket” expenses as documented by paid receipts. Also, when appropriate, the Companion can assist in Gregory’s using his charge card to pay for mutual activities including 15-20% tip at restaurants and by signing Gregory’s name with the Companion’s initials following.
SCHEDULING:
The Organizer will attempt to schedule each duty at least one week ahead and is able to work around the Companion's class schedule, regular job schedule, and other commitments.
Once the Companion commits to a specific date and time of duty, it is expected that the commitment be fufilled unless an unforeseen emergency occurs.
The Organizer will promise between four and eight hours duty each week with the possibility of more hours as necessary and as accepted by the Companion.
Should the Organizer need to cancel a scheduled duty, with or without notice, a minimum of four hours stipend, at $10.00 per hour, will be paid the Companion at the next scheduled/executed duty.
In rare case, emergency scheduling may be requested by the Organizer and will depend on the Companions availability.
In rare case, emergency cancellation by the Companion will be accepted and understood. The cancelled duty, however, will go unpaid.
The Companion will attempt to give the Organizer as much notice as possible if he/she will not be available for a future or extended time period.
CONFIDENTIALITY:
The Companion agrees to keep confidential any of the information or knowledge gained either directly or indirectly from his/her interactions with the Client and/or the Organizer even after termination for up to five years.
TERM/TERMINATION:
This agreement shall be for an unspecified term on an “at will” basis. It may be terminated by either party for any reason without explanation and may be done so in person, by voice mail, or on written (e-mail) notice of at least one week prior to a scheduled involvement.
The relationship between Organizer, Client, and Companion will be terminated immediately if there is a breach of behavior as set out, stated or implied in this agreement.
RETURN OF PROPERTY:
On termination, any property related to the relationship between Companion, Organizer, and/or Client shall be returned to the appropriate person as soon as possible including such items as keys to the unit, loaned items, left items, etc.
ORGANIZER GENERAL INFORMATION:
Organizer, Michael and Client, Gregory
Address
Home Phone:
Cell Phone:
E-Mail:
APPLICANT INFORMATION
GENERAL INFORMATION:
Companion:
Address:
City, State Zip:
Home Phone:
Cell Phone:
E-Mail:
BACKGROUND CHECK:
Most recent place of employment, date, phone number, person to contact:
Previous place of employment, date, phone number, person to contact:
A background check will be conducted. Any known criminal violations or record? YES NO If YES, please describe:
EDUCATION:
Please notify department giving recommendation that Organizer will be calling:
Level of education completed:
Currently working on:
University:
Department:
Area of Study:
Person to contact:
COMPANION PERSONAL RECOMMENDATIONS:
Please notify persons giving recommendations that the Organizer will be calling:
Name:
Phone:
Relationship:
Name:
Phone:
Relationship:
COMPANION MEDICAL/EMERGENCY INFORMATION:
Any known medical conditions that need be known by the Organizer?
YES NO If YES, please describe:
In case of medical emergency, notify:
This Agreement written by Michael with suggestions from www.rocketlawyer.com
May 2012
Monday, May 21, 2012
Noah's Ark
• • • • •
I am not afraid of tomorrow for I have seen yesterday and I love am having a hard time with today. But today is really all we have and it is what we do with it!
Noah's Ark : Everyting I need to know, I learned from Noah's Ark. I doubt it. We learn from many places and people and experiences.
ONE: Don't miss the boat. It’s got nothing to do with being on the boat. It has to do with making good decisions, being a caring person, love.
TWO: Remember that we are all in the same boat! Not true, we each have our separate problems to deal with and our own successes. While we all come from the same source how we live our lives can be different as night and day.
THREE: Plan ahead. It wasn't raining when Noah built the Ark. Sometimes there is no way to guess what might be needed in the future. So just live one day at a time and do the best you can.
FOUR: Stay fit. When you're 60 years old, someone may ask you to do something really big. A shame if you waited until you were 60 to do something really big. Hopefully your life will be filled with many big things over time, especially if you know how to look for them.
FIVE: Don't listen to critics; just get on with the job that needs to be done. This is somewhat true although sometimes the critics are right. Most important however, is to listen to yourself, to your heart.
SIX: Build your future on high ground. No matter how high the ground you might still drown. Or you might know how much is enough and live purely and simply.
SEVEN: For safety's sake, travel in pairs. Sometimes the pairs work and other times you need to leave the other behind. Actually LOVE is all you have.
EIGHT: Speed isn't always an advantage. The snails were on board with the cheetahs. Sometimes delayed actions miss the opportunity. Traveling is the point not how slowly or quickly.
NINE: When you're stressed, float awhile. Or drown. Or have a good cry, meditate, count what you are grateful for and the stress will dissipate.
TEN: Remember, the Ark was built by amateurs; the Titanic by professionals. And they both caused a lots of deaths. Either way we all die and what counts is how we spent our life and how we loved.
ELEVEN: No matter the storm, when you are with God, there's always a rainbow waiting. If God exists and while there might be a rainbow waiting it usually disappears with the sun. God is within, trust yourself, know what matters, LOVE!
Sunday, May 20, 2012
Congratulations
Congratulations, just posted my 300th post on this BLOG. Amazing what one can find to talk about.
The Good, The Bad, The Ugly
Hi. Me again. Sometimes I hate burdening my BLOG with CRAZY EVENTS but since I have no one to talk to, you are it BLOG. So thanks for listening.
GOOD:
Just went to Whole Foods for one thing, Buttermilk for making "Helen's Refrigerator Bran Muffins." Came home with two bottles of Sangria to try, lunch meat, some chocolate for Gregory, and steak, corn, cucumbers, and fresh mozzarella for tomorrow's dinner. I.E. came home with everything but the Buttermilk. We both got a good laugh out of this.
BAD:
I made Oatmeal Raisin Walnut cookies today. Six dozen cookies now piled high and sitting on the cooling rack on the kitchen counter. I decided to start making cookies for Gregory because his five o'clock coffee and cookies is so important to him and I felt that home made cookies would be a nice addition. My emotions aside, this is what took place.
"Time for your coffee and some home made cookies."
"Oh is it?"
"Yes."
Gregory proceeded, in his ritualistic way, to open the cookie shelf and to begin selecting some to have with his coffee. I stopped him and pointed out, again, the home made oatmeal cookies that were on the counter waiting for him. Next, without getting any coffee, he took his previously selected cookies, sat down on the purple chair, and ate them.
I mentioned that he had not yet gotten his coffee and that I made (pointing) Oatmeal Raisin cookies for him to have with his coffee. I left the room. He poured his coffee, added milk, warmed it in the microwave. Took his coffee to his desk and sat down to drink it. Still no Home Made Oatmeal Raisin Walnut Cookies. My emotions aside.
UGLY:
It was all I could do to overcome my "Agita" and continue in my move towards doing EVERYTHING for him, ASSUMING NOTHING, and PRETENDING that everything is OK when it is NOT!
I took a breath and in my calmest possible voice asked him to come over to the counter. I showed him the cookies and asked if he knew what they were? "Yes." And what are they called? "Them." (A statement, not a question.) Yes, cookies. And what are they for? "To eat." Yes, so take a few to have with your coffee. "OK." Do it now. SILENCE, INERTIA. Take some now. "OK." I stood there to make sure and he took three cookies and went over to sit down with his coffee. Then I went back to my computer. My emotions aside.
He just came into the bedroom and said, "They are my favorite." I thanked him ... but what can I say. Where am I supposed to put my emotions, my inability to fathom what he is going through, my fear at what I have to do next, my not wanting to treat him like an invalid, the ability to treat him like a satient human being? I am not ready to do absolutely everything for him to avoid the risk of his and/or my frustration (my anger!) Sometimes our interactions are so convoluted that I am not sure what has happened.
He just came into the computer room again and said, "Thanks for out there." You are welcome.
So where do I go? What do I do? How do I get through this? Guess what - There are no answers and even the questions don't work anymore. Getting through it means surviving until the next interaction and sometimes over night. My emotions are not aside. They are slowly killing me.
GOOD:
Just went to Whole Foods for one thing, Buttermilk for making "Helen's Refrigerator Bran Muffins." Came home with two bottles of Sangria to try, lunch meat, some chocolate for Gregory, and steak, corn, cucumbers, and fresh mozzarella for tomorrow's dinner. I.E. came home with everything but the Buttermilk. We both got a good laugh out of this.
BAD:
I made Oatmeal Raisin Walnut cookies today. Six dozen cookies now piled high and sitting on the cooling rack on the kitchen counter. I decided to start making cookies for Gregory because his five o'clock coffee and cookies is so important to him and I felt that home made cookies would be a nice addition. My emotions aside, this is what took place.
"Time for your coffee and some home made cookies."
"Oh is it?"
"Yes."
Gregory proceeded, in his ritualistic way, to open the cookie shelf and to begin selecting some to have with his coffee. I stopped him and pointed out, again, the home made oatmeal cookies that were on the counter waiting for him. Next, without getting any coffee, he took his previously selected cookies, sat down on the purple chair, and ate them.
I mentioned that he had not yet gotten his coffee and that I made (pointing) Oatmeal Raisin cookies for him to have with his coffee. I left the room. He poured his coffee, added milk, warmed it in the microwave. Took his coffee to his desk and sat down to drink it. Still no Home Made Oatmeal Raisin Walnut Cookies. My emotions aside.
UGLY:
It was all I could do to overcome my "Agita" and continue in my move towards doing EVERYTHING for him, ASSUMING NOTHING, and PRETENDING that everything is OK when it is NOT!
I took a breath and in my calmest possible voice asked him to come over to the counter. I showed him the cookies and asked if he knew what they were? "Yes." And what are they called? "Them." (A statement, not a question.) Yes, cookies. And what are they for? "To eat." Yes, so take a few to have with your coffee. "OK." Do it now. SILENCE, INERTIA. Take some now. "OK." I stood there to make sure and he took three cookies and went over to sit down with his coffee. Then I went back to my computer. My emotions aside.
He just came into the bedroom and said, "They are my favorite." I thanked him ... but what can I say. Where am I supposed to put my emotions, my inability to fathom what he is going through, my fear at what I have to do next, my not wanting to treat him like an invalid, the ability to treat him like a satient human being? I am not ready to do absolutely everything for him to avoid the risk of his and/or my frustration (my anger!) Sometimes our interactions are so convoluted that I am not sure what has happened.
He just came into the computer room again and said, "Thanks for out there." You are welcome.
So where do I go? What do I do? How do I get through this? Guess what - There are no answers and even the questions don't work anymore. Getting through it means surviving until the next interaction and sometimes over night. My emotions are not aside. They are slowly killing me.
The Getting Dressed Incident
We now have two companions who spend time with Gregory and that does make it easier for me to have some time to myself and to get away to meetings etc. Companions present their own problems and more work with scheduling, training, solving minor issues via text or phone, having a stranger in your home, trusting someone else to do the job that in your heart you feel only you can do but learning to "get over it."
Living with him continues to be difficult as I continue to try to learn how (after 35 years, can you imagine?)
Yesterday we were getting ready to go to a party and I thought I solved his "Getting Dressed Dilemma" problem by picking out what he would wear and laying it out on the bed (in the order one would put the clothes on.) My fatal mistake was not taking the blue jeans and shirt he was wearing from him when he took them off.
He got "Shirt Confused" and "Pants Frustrated." After taking his current clothes off, he put his new shirt and his black jeans on. Tried to put his blue jeans on over the black ones several times. (I just waited.) Then he took off his shirt. Tried the blue/black combination again bear chested but that didn't help. I finally had to help walk him through the "Clothing Sequence" and then we entered the "Black Sox and Shoes Zone."
I won't go into further detail but we finally did get dressed, left for the party, at which he and I had a great time. This morning he did his own "Thin Thin" (our version of toast) and is now reading the New York Times (a new "Technology" since his computer skills are all but gone," waiting while I have a cup of coffee, do e-mail and begin our "Sunday Oatmeal Ritual."
Living with him continues to be difficult as I continue to try to learn how (after 35 years, can you imagine?)
Yesterday we were getting ready to go to a party and I thought I solved his "Getting Dressed Dilemma" problem by picking out what he would wear and laying it out on the bed (in the order one would put the clothes on.) My fatal mistake was not taking the blue jeans and shirt he was wearing from him when he took them off.
He got "Shirt Confused" and "Pants Frustrated." After taking his current clothes off, he put his new shirt and his black jeans on. Tried to put his blue jeans on over the black ones several times. (I just waited.) Then he took off his shirt. Tried the blue/black combination again bear chested but that didn't help. I finally had to help walk him through the "Clothing Sequence" and then we entered the "Black Sox and Shoes Zone."
I won't go into further detail but we finally did get dressed, left for the party, at which he and I had a great time. This morning he did his own "Thin Thin" (our version of toast) and is now reading the New York Times (a new "Technology" since his computer skills are all but gone," waiting while I have a cup of coffee, do e-mail and begin our "Sunday Oatmeal Ritual."
Saturday, May 19, 2012
Thursday, May 17, 2012
Dementia vs Delerium
Came across this article and it addresses what recently happened when Gregory and I returned home from Michigan after visiting his brother who had a major stroke. Turns out Gregory's having just begun a very very bad cough and cold, having visited his brother and possibly not having the language to process his feelings, and the long drive home caused DELIRIUM. Nice to have a label for something if only because you can begin to know (or pretend to know) what to do about it. Read on:
CLICK HERE TO SEE: Previous BLOG referred to in this post.
Below is a link to a site I discovered that so far seems very helpful with my being a better caregiver partner to Gregory.
CLICK HERE TO GO TO: Caring.Com
What's the Difference Between Dementia and Delirium?
1 answer | Last updated: Feb 26, 2012 Leslie Kernisan, M.D. said... The main difference between dementia and delirium relates to timing and reversibility. Both dementia and delirium involve abnormal thinking and brain function. Having dementia means that a person has permanent problems with thinking and memory, which are severe enough to affect day-to-day function. The most common underlying cause of dementia is Alzheimer's disease. In most people, dementia symptoms come on gradually, and thinking problems continue to slowly worsen over months to years.
Delirium, on the other hand, is an acute state of mental confusion, meaning that a person's thinking and ability to focus are worse than usual. Whereas dementia tends to develop slowly over years, the symptoms of delirium come on quickly, over hours to days. Delirium is usually brought on by stress affecting the body or the brain. It can cause a healthy person to behave like someone with dementia.
In people with dementia, delirium can make them much more confused than usual. People with dementia are especially prone to develop delirium when they're sick or exposed to certain common medications. In most cases, the confusion of delirium improves once the underlying illness or stress is removed.
So unlike a dementia such as Alzheimer's disease, delirium is reversible. In people with dementia, treatment of delirium usually brings them back to their usual state of mental functioning (what was "normal" for them before the case of delirium), although many don't ever get quite back to where they were.
If a doctor or other medical staff (such as a nurse in the hospital) doesn't know a patient well, it can be hard to tell delirium and dementia apart, because both usually involve confused thinking. The professional may not be able to figure out whether this is a change unless a caregiver is available to provide extra information about what's usual. For that and other reasons, it's important for caregivers to understand how to prevent delirium and what to do when they see signs of delirium. .
CLICK HERE TO SEE: Previous BLOG referred to in this post.
Below is a link to a site I discovered that so far seems very helpful with my being a better caregiver partner to Gregory.
CLICK HERE TO GO TO: Caring.Com
Tuesday, May 15, 2012
The Case of the Confused Underwear
Last night Gregory laid out his morning sport pants and shirt but forgot about the underwear. I reminded him but my language (undershirt/underpants) did not help so I told him we would take care of it in the morning. I knew I would be in for a "fun filled" morning but I was too tired to manage the underwear right then.
Sure enough when I woke, he was in his morning sport clothes but knew something was wrong. Without having to be asked I said, "You need underpants and an undershirt." Immediately he realized what was needed so he returned to the closet where he got out a pair of underpants and took off his sport shirt. Did you catch the subtlety of what happened?
Next, he attempted to put on his underpants over the sport pants, stopped foot in mid air and realized something was wrong and stopped. He looked at the under pants to make sure the were facing the correct directions (i.e. fly in the front?) and tried again, sport pants still on. He did this approximately six times. FInally he came into the bedroom, underpants in hand.
He knew I was available but didn't ask for help so I kept quiet. He tried the "underpants over sport pants" routine again several times and stopped. He put the underpants on the floor and said aloud to himself, "Just put them on. Just put them on."
Then it came clear to him (I could see the Ah-Ha!) and he took off his sport pants, put on his underpants (backwards but corrected with my comment,) then put on his sport pants ... all in the correct order. He was amazed that it had been so confusing and so obvious.
With a reminder that he still needed to put on an undershirt, he was able to follow through without any complications. In the past I would have jumped in and given instructions. This time, although painful probably for both of us, for the most part I kept quiet. I had to weigh his frustrations against his finally asking for help, against when I needed to intervene. Not an easy job.
Sure enough when I woke, he was in his morning sport clothes but knew something was wrong. Without having to be asked I said, "You need underpants and an undershirt." Immediately he realized what was needed so he returned to the closet where he got out a pair of underpants and took off his sport shirt. Did you catch the subtlety of what happened?
Next, he attempted to put on his underpants over the sport pants, stopped foot in mid air and realized something was wrong and stopped. He looked at the under pants to make sure the were facing the correct directions (i.e. fly in the front?) and tried again, sport pants still on. He did this approximately six times. FInally he came into the bedroom, underpants in hand.
He knew I was available but didn't ask for help so I kept quiet. He tried the "underpants over sport pants" routine again several times and stopped. He put the underpants on the floor and said aloud to himself, "Just put them on. Just put them on."
Then it came clear to him (I could see the Ah-Ha!) and he took off his sport pants, put on his underpants (backwards but corrected with my comment,) then put on his sport pants ... all in the correct order. He was amazed that it had been so confusing and so obvious.
With a reminder that he still needed to put on an undershirt, he was able to follow through without any complications. In the past I would have jumped in and given instructions. This time, although painful probably for both of us, for the most part I kept quiet. I had to weigh his frustrations against his finally asking for help, against when I needed to intervene. Not an easy job.
Monday, May 14, 2012
How Strange Is It?
Plates have disappeared! For some reason plates have disappeared from Gregory's lexicon.
Plates used to hold his morning breakfast fish, now he tries to arrange the fish laden crackers directly on his tray.
Plates used to be where a muffin was placed and then put into the microwave for a brief warming. Usually the muffin goes directly into the microwave. This morning he did use a plate but it ended up broken on the counter.
Plates also used to be used to hold breakfast sausage between the two parts of a folded paper towel when cooked in the microwave
Plates used to be for dinner when placed in front of one on a placemat. Now the plate is placed somewhere off to the side without regard for the placemat's positon.
Plates held an assortment of cookies to be had with his early evening coffee. Not the chocolate chip, butter cookie, and biscotti are lined up on a paper towel which drips crumbs as he carries it to his desk.
I am not sure what is going on here. Just saying. Plates seem to have disappeared.
Plates used to hold his morning breakfast fish, now he tries to arrange the fish laden crackers directly on his tray.
Plates used to be where a muffin was placed and then put into the microwave for a brief warming. Usually the muffin goes directly into the microwave. This morning he did use a plate but it ended up broken on the counter.
Plates also used to be used to hold breakfast sausage between the two parts of a folded paper towel when cooked in the microwave
Plates used to be for dinner when placed in front of one on a placemat. Now the plate is placed somewhere off to the side without regard for the placemat's positon.
Plates held an assortment of cookies to be had with his early evening coffee. Not the chocolate chip, butter cookie, and biscotti are lined up on a paper towel which drips crumbs as he carries it to his desk.
I am not sure what is going on here. Just saying. Plates seem to have disappeared.
Sunday, May 13, 2012
Companion Agreement
As of May 18, 2012
COMPANION to Gregory
INTRODUCTION
This role is to be a COMPANION to Gregory who has been diagnosed with Young Onset Alzheimer’s Disease.We have been coping with this for close to ten years now and while Gregory is very healthy and still fairly independent, he has begun to fail enough that I feel a "companion" would help to make our life easier and Gregory’s safer as well as allow me to continue with my responsibilities away from home.
At this point in time he has difficulty with language and cognition. His life skills are at best sufficient. At times he gets confused and is unable to take care of himself. For example I have been helping him put together his breakfasts and sometimes his lunch while at other times he does well by himself.
He doesn't always know what clothes to choose to reflect the season or weather. He used to go for long walks by himself, never got lost, but recently got lost in our condo building when trying to return a shopping cart to the lobby.
I remind him periodically, and especially before we go out, to make sure he uses the restroom. He easily gets confused especially when unexpected or unusual situations occur, for example if he was home alone when the building’s emergency system announces an evacuation.
At times it is difficult to know what he understands and what he THINKS he understands. For example you say turn OFF the light, and he will say OK and turn it ON.
It would be in the best interests of all parties for the Companion to have some knowledge of Dementias and or to do some reading on the subject before and during the period of employment.
COMPANION AGREEMENT
This Agreement is effective as of _________________, between Michael, “ORGANIZER” of this Agreement and partner to Gregory “CLIENT,” and _________________________________________________, “COMPANION.”
JOB DESCRIPTION:
Gregory (and I) need to have a companion with whom he can spend time while I am away. Sometimes it will be for a few hours and sometimes it will be for a morning, afternoon, or evening. The Companion and Client can stay home, go places, eat out, cook at home, watch TV or a DVD, go to a movie, grocery shop with a list from me, swim at LA Fitness, do a jig saw puzzle, or just “be quiet together.”
The student/companion can do his homework while Gregory is working on his activities, napping, or reading but for the most part should be available to interact with Gregory according to Gregory’s needs. As necessary, the companion will answer simple questions, give simple directions, and depending on the time of day help with Gregory’s getting dressed or getting ready for bed.
Some help with simple meal preparation might take place - like making a sandwich or salad or warming up a dinner I've prepared. After conferring with the Organizer, the companion could be more ambitions with meals if he/she desired. At times eating lunch or dinner at a neighborhood restaurant will be good. Meals will be provided for the companion, at home or out, when the client takes a meal.
The type of person who would be ideal for this position must be "gay friendly," intelligent, sensitive to Alzheimer's needs, trustworthy. In turn we can offer an "interesting" experience with a kind, gentle, loving family in a clean, comfortable, attractive, intellectual environment/home setting.
MOST IMPORTANTLY the companion will be responsible for Gregory's SAFETY and WELL BEING as well as insuring and respecting Gregory’s sense of self and worth. A balance will need to be insured between being responsible and making decisions for Gregory but not treating him like a child.
The companion and Gregory will have to be together at all times while outside the home (for example waiting outside the bathroom at the movies rather than letting Gregory alone while the companion remains at the seats.) At home they can be in separate parts of the condo unit.
At this time the companion will NOT be responsible for any medical or bodily function type of care but might have to "suggest" to Gregory the steps in cleaning himself up if he spills on his shirt or slightly messes his pants (rarely happens but has been known to.)
For the most part, I do not see the role of companion to Gregory as any more major than that of a friend dropping by for a visit or taking him out to dinner while I am not at home. The key factor in the companion’s responsibilities and of utmost importance, is G's safely and with support in the areas of cognitive ability and life skill functioning, provided in a respectful way.
Whenever the Companion is unsure of what to do, he/she should text or call the Organizer on his cell phone: xxx-xxx-xxxx. In case of emergency the Companion should take necessary actions and then notify the Organizer.
DUTIES:
The Companion agrees to perform faithfully, industriously, and to the best of his/her ability, experience, and talents, all of the duties that may be required by the express and implicit terms of this Agreement, to the reasonable satisfaction of the Organizer. Such duties shall be provided at such place(s) as the needs may require from time to time, variously including (our address) and the surrounding Evanston, neighborhood. Travel outside of Evanston should NOT take place. Transportation in any vehicle should NOT take place.
STIPEND:
A stipend of $10.00/arranged hour will be paid to the Companion in cash at the end of each round of duty. In the event of expenses like sharing a movie or dinner out, the Companion’s way will be paid. No other responsibilities will be taken on by the Organizer nor benefits given the “Companion.”
REIMBURSEMENT:
The Organizer will reimburse the Companion for agreed upon “out-of-pocket” expenses as documented by paid receipts. Also, when appropriate, the Companion can assist in Gregory’s using his charge card to pay for mutual activities including 15-20% tip at restaurants and by signing Gregory’s name with the Companion’s initials following.
SCHEDULING:
The Organizer will attempt to schedule each duty at least one week ahead and is able to work around the Companion's class schedule, regular job schedule, and other commitments.
Once the Companion commits to a specific date and time of duty, it is expected that the commitment be fulfilled unless an unforeseen emergency occurs.
The Organizer will promise between four and eight hours duty each week with the possibility of more hours as necessary and as accepted by the Companion.
Should the Organizer need to cancel a scheduled duty, with or without notice, a minimum of four hours stipend, at $10.00 per hour, will be paid the Companion at the next scheduled/executed duty.
In rare case, emergency scheduling may be requested by the Organizer and will depend on the Companions availability.
In rare case, emergency cancellation by the Companion will be accepted and understood. The cancelled duty, however, will go unpaid.
The Companion will attempt to give the Organizer as much notice as possible if he/she will not be available for a future or extended time period.
CONFIDENTIALITY:
The Companion agrees to keep confidential any of the information or knowledge gained either directly or indirectly from his/her interactions with the Client and/or the Organizer even after termination for up to five years.
TERM/TERMINATION:
This agreement shall be for an unspecified term on an “at will” basis. It may be terminated by either party for any reason without explanation and may be done so in person, by voice mail, or on written (e-mail) notice of at least one week prior to a scheduled involvement.
The relationship between Organizer, Client, and Companion will be terminated immediately if there is a breach of behavior as set out, stated or implied in this agreement.
RETURN OF PROPERTY:
On termination, any property related to the relationship between Companion, Organizer, and/or Client shall be returned to the appropriate person as soon as possible including such items as keys to the unit, loaned items, left items, etc.
ORGANIZER GENERAL INFORMATION:
Organizer, Michael and Client, Gregory
Address
Home Phone: xxx-xxx-xxxx Cell Phone: xxx-xxx-xxxx
E-Mail: mhorvich@me.com
APPLICANT INFORMATION
GENERAL INFORMATION:
Companion:
Address:
City, State Zip:
Home Phone:
Cell Phone:
E-Mail:
BACKGROUND CHECK:
Most recent place of employment, date, phone number, person to contact:
Previous place of employment, date, phone number, person to contact:
A background check will be conducted. Any known criminal violations or record? YES NO If YES, please describe:
EDUCATION:
Please notify department giving recommendation that Organizer will be calling:
Level of education completed:
Currently working on:
University:
Department:
Area of Study:
Person to contact:
COMPANION PERSONAL RECOMMENDATIONS:
Please notify persons giving recommendations that the Organizer will be calling:
Name:
Phone:
Relationship:
Name:
Phone:
Relationship:
COMPANION MEDICAL/EMERGENCY INFORMATION:
Any known medical conditions that need be known by the Organizer?
YES NO If YES, please describe:
In case of medical emergency, notify:
This Agreement written by Michael with suggestions from www.rocketlawyer.com May 2012
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