Kate, my friend in Australia who is a great advocate for people diagnosed with Dementia/ Alzheimer's and who herself has that diagnosis, in a recent blog discusses care homes. In previous posts she talks about the unfairness of how so many people in care for Dementia are treated, especially without regard for their desires, rights, etc. And I agree with her very much. She posted the following to soften her "attack" on caregiver's and also describes the wonderful "Group Homes" she visited in Australia. Here are my comments to her post:

Kate, Your description of "Group Homes" sounds wonderful. I know that there is a movement afoot to move from a "Hospital/Medical Model" of care for Dementia Residents to a "Home/Family Model" and I truly embrace that move.

I also appreciated your "apology" to support facilities and caregivers who certainly are trying their best to provide loving, empathetic care for their spouses and family members, although not always under the best of circumstances.

Sometimes, one must settle for the lesser evils! However, I believe that even in a "Hospital Model" facility, the care can be much more "Home Model" like. Also, the details of what might go on at any facility is often dictated by the stage of care that the residents might be at but that doesn't mean they should have to "settle for less" than humane, best practices! 

I know that at Gregory's facility, many if not most of the residents on his floor are not able to be as active and "family" oriented as we would hope, but the care and the ambience of the place certainly can be better. The health care, medical services are amazingly excellent, especially with residents who can not share their needs, discomforts, pains, and illness symptoms. The social/emotional environment, however can bemuch better.

My continuing quest is to share my observations, having been with Gregory almost every day, with the administration, managers, doctors, and department heads, etc. I am excited and pleased that they are eager to hear my feedback and we have scheduled a lunch meeting (I'll bring the food) in which I can share my observations and suggestions with everyone at one time and then open it to Q and A.

Instead of giving compliments, observations, blames, suggestions for improvement, etc ... I plan on creating a "fantasy story" of what the ideal Memory Care Unit could look like based on the Lieberman Center's physical plant parameters and based on their target population of residents. Wish me luck. I will be sharing the story on my BLOG in the not too distant future.

Thank you Kate, for helping me to continue to educate myself in the areas of: 1) care-giving, 2) appropriate language use when discussing Dementia/ Alzheimer's, 3) seeking feedback from people diagnosed with Dementia on how they would like to cared for, 4) appropriate (if any) use of psychotropic drugs, 5) living beyond the diagnosis and living well with the diagnosis of Dementia/ Alzheimer's, 6) and I am sure etc, etc etc!


http://kateswaffer.com/2015/11/01/safety-vs-autonomy-in-residential-care/

http://kateswaffer.com/2015/11/02/open-letter-to-group-homes-australia/

Types of Dementia and More

Just read an interesting article about a variation of Dementia/ Alzheimer's in which the person affected had difficulties with vision. I saw a lot of this with Gregory as he progressed through his journey. Sometimes he could not see the fork sitting next to the plate in front of him. In the later stages of his Dementia, he had a difficult time focusing on things like the TV, a book of photographs, and at times on me!

As I have continued to study his "symptoms" it looks to me like he was affected by several types of dementia at one time including: Posterior Cortical Atrophy, Lewy Body, Frontotemporal, and  Primary Progressive Aphasia which affects language. 

A new type of Dementia is being called "Mixed Dementia." In mixed dementia abnormalities linked to more than one type of dementia occur simultaneously in the brain. Recent studies suggest that mixed dementia is more common than previously thought.

Recently, there has been a lot of activity and discussion in the following areas: 1) Types of Dementia, 2) Appropriate language to discuss Dementia and the people affected with it, 3) Including people with Dementia in decisions about caring for the needs of people with Dementia, and 4) A more careful use (if any) of psychotropic drugs with people diagnosed with Dementia.

As recently as ten years ago, not much was known about Dementia/ Alzheimer's. People were embarrassed to discuss the disease. Little was known about how to care for people with Dementia. While the knowledge base is increasing exponentially, much still needs to be done to understand the disease and to support people who have been diagnosed with one form or another of Dementia.

Perhaps one of Gregory's legacy's, through my blogging, can be to help "fight these battles" for understanding, equality, and support!

Click here for this article which discusses Dementia with visual difficulties.

Click here for this article which talked about Primary Progressive Aphasia.

Click here for this article which discusses ten types of Dementia.

Phrases to Learn for Caregivers

I have previously mentioned the changes that are going on in being more aware of the language you use to talk about and with people with Alzheimer's. Here is a good way to look at "problematic responsive behavior." Thanks to AmazingSusan for this. 

“Problematic” responsive behaviour is most often the result of:

A physical issue she is unable to pinpoint and/or articulate (e.g. pain, incontinence issue)

A “trigger” or triggers in the environment (e.g. noise, temperature, activity)

How I or someone else has interacted with her

The obvious way to stop anger and aggression is to address the root cause:

Find and address the physical issue

Identify and remove the environmental trigger(s)

Stop blaming her and start taking responsibility for causing responsive behaviours

Horoscopes and Breakdowns

June 17, 2013

1. 
   

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.

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:

1. 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.
2. 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.
3. 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.

There Is No Place Like Home Auntie Em

I have often considered "next steps" for Gregory and me but he is not yet ready nor am I. As long as I am physically able to do a good job of supporting him and emotionally together enough to continue supporting myself, I will do what I have to. There are many steps and outside support available before needing to move him to a home, I will not hesitate when it is time, and I will know when that time arrives. Meanwhile his home is here with me in the home our love for each other has created over the last 35+ years.

Optimism

Interesting shifts take place the longer one deals with being an Alzheimer's Caregiver Partner. I realized that while taking care of my partner (keeping him as safe, clean, content, useful, busy, etc) I have forgotten to figure myself into the equation.

Not that I don't take care of myself but the personalities of the Caregiver Partners seem to merge with my own taking second place. All thoughts are shadowed by Gregory and his Alzheimer's.

The task is all consuming physically, emotionally, psychologically, and intellectually with little time left for myself. People always say, "Are you taking care of yourself?" While they are well meaning, it tells me that they do not really understand what it takes to be in this position. 

Of course I am taking care of myself as much as possible. I eat well. I continue to sleep well. I can got out on my own when Gregory's Companions are with him. I read, go to the theater, eat candy, enjoy cooking, feel good about the order I am able to create for Gregory and me in our home.

But the emotional side of seeing your loved one continue to disintegrate in front of your eyes on a daily basis, unable to do today what he could do yesterday, who knows about tomorrow, and to try to untangle the messy web of associations he gets himself into cannot be put to rest.

The constant monitoring of his needs, actions, behaviors, thoughts is a job that cannot take a ten minute break, a weekend off, let alone a vacation. It is with you all the time even when I are not with Gregory.

Even while "taking care of yourself" it is very difficult to leave the mental and emotional part behind. It reminds me of people to try to escape from their problems by going on vacation or more extremely running away from their problems only to realize the problems came along with them. You can avoid your problems but that will not help solve them!

But then this shift I first spoke of began to take place. After 35+ years of being part of a loving, respectful, growing relationship and after 10+ years of being the lead caregiver partner, one begins to reestablish his own individuality and his own identity.

Yes I am still Gregory's Life Partner. Yes I am the lead member of his caregiving team. But I am also me and I am separate and I am different and I am unique and I will somehow come out on the other side of this Alzheimer's as a whole me.

This shift began to take place during my Yoga Nidra Mindful Meditation sessions when I realized that all the work done during the meditation was about Gregory instead of about me.

Once I made that shift I found that by making the meditation, the quest, the ability to quiet the noise in my head about me and not him, I was in a better place. I could be better with and for Gregory as well as for myself. 

In other words I began to concentrate on me NOT on him and we all received the benefits. For example, NOT "How can I be better for Gregory" but rather "How can I be a better person." One step further is accepting my desires in the present tense, already present and already functioning. I AM A BETTER PERSON!

This BLOG's writing was sparked by today's horoscope as added below. I realized as I read it and identified with what it had to say, that I was thinking about me and my life and my future and not necessarily Gregory's. This may sound selfish but it is not.

My meditations will change me ... not Gregory. It will help me create a more patient, calm, loving environment for Gregory but he will still have to be the one to live in his world. I will work at understanding his world, but I do not have to live in it!

• • • • •

From: http://www.dailyom.com
March 9, 2013
Lifted by Outlook
Aries Daily Horoscope

Your optimism can spark your determination today, providing you with the motivation you need to reach a new phase of accomplishment. The visions of a more beautiful future that you entertain while working and playing will likely inspire you to double your efforts where your ambitions are concerned. You may feel buoyant and energized as you contemplate the fulfillment of your expectations. And because you are likely approaching your tasks with an attitude of confidence today, you may find that you do not hesitate when presented with auspicious opportunities. If you take pleasure in your quest for accomplishment, you will likely have little trouble looking on the brighter side of life.

The most potent forms of motivation are often those that originate within us, fueled by the joy we feel when we contemplate our positive expectations. When we focus on our dreams and hopes, we need not concern ourselves greatly with the trials we face in the pursuit of our ambitions. Though we must address these issues directly, they do not cause anxious thoughts to blossom in our minds. Rather, we choose to treat tribulation pragmatically by doing all that is within our power to overcome the roadblocks that stand in the way of our eventual success. Our spirits never flag and we can take pride in the fact that we are doing our best to meet our goals, no matter what the outcome of our efforts is. The optimism you carry in your heart today will energize you and ensure that you stay strong in the face of adversity.

B.P.s Report

If you have been following this blog you know that we have two college student companions spending time with Gregory when I have "stuff to do," meetings to attend, or just need time to get away from the 24/7 of Alzheimer's to play. Each companion spends 4 to 8 hours with Gregory per week.

I asked each of the companions to write about the time they have spent with Gregory up to now. I wasn't sure what I expected or wanted them to write about but I was hoping for a perspective through their eyes of the time they spend with Gregory.

B.P. is a senior at Roosevelt studying Psychology. This is reproduced with his permission. K.C.'s report will follow in a few days.

• • • • •

I am a senior student at Roosevelt University and psychology major, and I play music on the side [cello, guitar, bass guitar]. I sit with Greg about once a week, usually for four or five hours, sometimes longer.

            
Most of my days with Greg follow something of a pattern. Once Michael leaves (usually with an affectionate kiss and “I love you” to his husband), Greg and I go for a walk. He usually seems best in the mornings, perhaps half an hour after I arrive. As we walk, Greg will point out various buildings that he enjoys or disapproves with observations of “Oh what a hoot!” or “What a little shit!” While many parts of Greg’s personality and intellect may be deteriorating fast, his sense of aesthetic opinion is very strong. I often try to elicit an explanation of why he likes or dislikes something and this seems to fumble him. He can’t exactly put his finger on exactly why he feels one way or another about a building, rose, or “piece” (which can refer to a great number of different things from music to movies to sculpture). I don’t think that this artistic sense of personality is going to go anytime soon. I could certainly be wrong, and I was proven wrong before with my grandmother who also had Alzheimer’s, but I feel confident in my instinct.

            
Lately, our days have been a little simpler. In the beginning of the summer, we would go for longer walks, come back and I would very earnestly try to keep Greg very occupied. We still go on walks most days, but now they are kept short, and the rest of the day is more quiet. One day, we did nothing but go to the library, read for an hour and a half, came back and listened to music for the rest of the day. He loved it. (Telling Michael “We listened to music the whole day!” with something near glee) It seems that variety is very healthy, some elements kept consistent, but no day being completely and totally patterned.

            
Some things do seem to help every day that I am with Greg. Going to the lake always seems to calm any agitation that might be present in the beginning of the day. Watching the dogs at the park has the same effect. The rose garden also seems to help, but doesn’t seem to produce as consistent results. While variety is certainly a virtue, so is consistency. The trick is to practice both in moderation.

            
Patience is a finite virtue, and I imagine that ten years of caring for Greg have taken a serious dip into Michael’s reserves. To my mind’s eye it is here clear that I provide some substantive help for both men. For Michael, I provide a chance to escape from his duties and replenish his stores of patience. And for Greg, I provide a company that is perhaps less easily frustrated and thus, a little less demanding. 

At the same time, I am provide a different set of demands: my knowledge of their house and the layout of the general area isn’t great and so Gregory has to work to recall these pieces of information. As I gather, this process of recall can take some time, and often, Michael will get frustrated and say “Let me do it” (with equal parts love and exasperation). On the other hand I will simply wait and casually look the other way. In fact, I make it a point to do this as much as possible. I think that it is important for Greg to frequently exercise his memory. If he doesn’t, I feel the results will be like that of a man who is bedridden for several months: the muscle will deteriorate. The same will happen to his memory, and at this point, nothing new can be made anymore: no new memories are created or preserved. This is especially apparent with smaller, less significant pieces of information. 

For example, Greg once answered a phone call from Michael, and I heard him say “500 people?! Wow…” Less than five minutes later when I asked him about the call, he said that Michael had had a lot of museum visitors, but he couldn’t remember the number. The insignificant things, those that aren’t immediately important to impact Greg’s daily living get dropped by the wayside within minutes. It seems clear to me that those pieces of information that are significant enough to still be recalled must be brought up regularly.

            
A prime example of this occurred the other week. As I gather, some of Greg’s family had come to visit for a few days, and thus Michael had coordinated all of their meals, including lunch. Normally Greg has a salad for lunch most days. This seems like a very good exercise of memory to me. He has to remember where all of the necessary ingredients and utensils are and has to figure out how to put them together. On an average day, he can work this out with few hiccups, though for whatever reason he seemingly can never remember to get a fork out or even where the forks are. 

The first day that I saw Greg after this stay with his relatives, Michael suggested that we stay in for lunch, and so we did. Greg had enormous difficulty making his salad. It took a large number of suggestions from me, and my getting out the salad drawer from the refrigerator. The endeavor also took significantly longer. It is worth noting that he still did it by himself for the most part. Once again, I simply sat back and ate my own lunch and let him work things out on his own. [It is also worth noting that in the beginning of our sitting relationship that I tried to make sure that he ate or at least prepared his lunch before me. Now I realize that I need to take care of my own needs in order to be patient, and that this patience is much more important than any misguided notions of manners that I had.

            
It seems that while Greg can’t make new and lasting memories, many of the old ones are still much intact. As Michael mentioned on the first day, the memories and the words are there, it is the trigger that is difficult to find. A prime example is seen at the beginning of nearly every day that I see Greg. He can very easily find his way around the city in terms of direction (watching for cars and knowing when to not cross the street are different matters).  Occasionally, he’ll get stuck at the beginning, not entirely sure how to start, or caught up in the delusion that things have been “moved” (for instance, there is a curiously persistent notion that the lake has been moved and thus it isn’t to the east anymore) But once he actually gets going, Greg is absolutely fine. 

The same is true of unlocking the door to their apartment. As I’m sure the reader is aware from personal experience, every door is a little different, and every lock requires its own special jimmy to actually trigger the mechanism. It always takes him a moment to figure out where the necessary key is, and which one it is (even getting it into the lock sometimes presents a challenge) but once these obstacles of recall are overcome, his hands seem to simply know what to do. One day when I perhaps pushed Greg a little too far on our walk (it was quite hot that day and he doesn’t respond well to heat) he had significantly more trouble in getting the door open. But once he had a glass of water and laid down, he seemed fine. 

Things like engrams aren’t affected in nearly the same way as more typical memories. But the point remains the same: the greatest obstacle in retrieving a memory is locating the trigger and taking the first step. Once that is accomplished, feats of remembrance of far greater magnitude are possible. It seems clear to me that triggers must be regularly exercised, and this is the main thing that I try to do throughout the day (besides keeping him safe and at ease)  

            
Throughout this report, I’ve gone over the ways that I feel I help Greg and Michael. But there are certainly ways that I too benefit, and there is one small way in which I have gotten something that I did not expect. Greg seems like a very confident person. When asked about music or his career as an architect, he stresses his ability to simply do  these things. For example, when I have asked how he would approach playing music or designing a particular building he always responds the same way: “I would just sit down and it would flow out of me.” To the unfamiliar, this may seem like bragging, but in all reality, I think Greg is simply being honest, and when the sheer elegance and excellence of his work is considered, it fits. 

The reason that I bring this up is that I have never been like Greg. I am far more self-aware and anxious. I almost always feel unbearably self-conscious when I show people any creative works that I have produced. And so I feel that I too get something out of my time with Greg. One day when I had my cello over at the apartment, I mentioned my anxiety and apprehension about playing in front of others. In a very matter of fact way, he said that I sounded just fine. To me this is high praise, considering the caliber of musician that he once was. I know that he won’t sugarcoat his comments on my playing, so I don’t worry. 

In essence, I very much feel that I too am getting something out of our relationship, and on some level, I think Greg is aware of this. I think this symbiosis is a very healthy thing, as I imagine many of his day to day relationships to be rather one-sided which can certainly present frustration.

The Shoemaker's Elf

Sometimes I feel like the Shoemaker's Elves. When I see things Gregory has left  lying around in unexpected paces, I secretly put them back where they belong so he can find them in the morning.

The Elves and the Shoemaker

There was once a shoemaker, who worked very hard and was very honest: but still he could not earn enough to live upon; and at last all he had in the world was gone, save just leather enough to make 

one pair of shoes.

Then he cut his leather out, all ready to make up the next day, meaning to rise early in the morning to his work. His conscience was clear and his heart light amidst all his troubles; so he went peaceably to bed, left all his cares to Heaven, and soon fell asleep. In the morning after he had said his prayers, he sat himself down to his work; when, to his great wonder, there stood the shoes all ready made, upon the table. The good man knew not what to say or think at such an odd thing happening. He looked at the workmanship; there was not one false stitch in the whole job; all was so neat and true, that it was quite a masterpiece.

The same day a customer came in, and the shoes suited him so well that he willingly paid a price higher than usual for them; and the poor shoemaker, with the money, bought leather enough to make two pairs more. In the evening he cut out the work, and went to bed early, that he might get up and begin betimes next day; but he was saved all the trouble, for when he got up in the morning the work was done ready to his hand. Soon in came buyers, who paid him handsomely for his goods, so that he bought leather enough for four pair more. He cut out the work again overnight and found it done in the morning, as before; and so it went on for some time: what was got ready in the evening was always done by daybreak, and the good man soon became thriving and well off again.

One evening, about Christmas-time, as he and his wife were sitting over the fire chatting together, he said to her, ’I should like to sit up and watch tonight, that we may see who it is that comes and does my work for me.’ The wife liked the thought; so they left a light burning, and hid themselves in a corner of the room, behind a curtain that was hung up there, and watched what would happen.

As soon as it was midnight, there came in two little naked dwarfs; and they sat themselves upon the shoemaker’s bench, took up all the work that was cut out, and began to ply with their little fingers, stitching and rapping and tapping away at such a rate, that the shoemaker was all wonder, and could not take his eyes off them. And on they went, till the job was quite done, and the shoes stood ready for use upon the table. This was long before daybreak; and then they bustled away as quick as lightning.

The next day the wife said to the shoemaker. ’These little wights have made us rich, and we ought to be thankful to them, and do them a good turn if we can. I am quite sorry to see them run about as they do; and indeed it is not very decent, for they have nothing upon their backs to keep off the cold. I’ll tell you what, I will make each of them a shirt, and a coat and waistcoat, and a pair of pantaloons into the bargain; and do you make each of them a little pair of shoes.’

The thought pleased the good cobbler very much; and one evening, when all the things were ready, they laid them on the table, instead of the work that they used to cut out, and then went and hid themselves, to watch what the little elves would do.

About midnight in they came, dancing and skipping, hopped round the room, and then went to sit down to their work as usual; but when they saw the clothes lying for them, they laughed and chuckled, and seemed mightily delighted.

Then they dressed themselves in the twinkling of an eye, and danced and capered and sprang about, as merry as could be; till at last they danced out at the door, and away over the green.

The good couple saw them no more; but everything went well with them from that time forward, as long as they lived.

When Will It End?

I hate my life right about now. I am living with tears. I am lonely. I am confused. I am frightened. I am confused. Do I feel better now that I have gotten that out? No.

I have decided to take over making his breakfast completely every morning for a while (maybe forever.) I nicely told him that he would have to stay in bed until I was ready to help, that unfortunately this is where we are with our life as of now, and that it means more loss of independence for him.


Seeing that he was upset, I told him that I need to talk about it with him and that I know it mades him feel bad and that eventually I  will be able to avoid discussing it. I just don't feel comfortable making unilateral decisions without telling him about it. I am sure that one day soon I will be able to do that as well.


He couldn't find the muffins in the refrigerator this morning, didn't know how to use the butter spray, forgot to warm the muffin up in the microwave and then wondered why it was cold. Instead of just sitting at his place at the counter, he was trying (again) to perch himself on the edge of the stool in a very awkward position in front of the drawers with no knee room because that is where he put down his muffin.


Until now he has been making his own breakfast but only at 70-80% success since returning from Mexico. Then I have to intervene or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.


I will also begin to lay out his clothes every day because he not only cannot do this easily but also cannot judge what to wear based on the weather. Yesterday it was 90 out and he said he wanted a light shirt. I put a short sleeved polo out for him. As we were about to leave, he had on a long sleeve shirt and I questioned him about the short sleeve one. He said this was the one he wanted. I come to find out that he had on both shirts, thinking the Polo was an undershirt, however, when I named the "undershirt" he is not able to make an association with the item.

Until now he has been getting dressed on his own but only at 70-80% success. Then I have to intervene, or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.

I have been handing him his night time sleepwear and laying out his morning sweats. Easier for him and for me.

I have decided to take over fully for breakfast and getting dressed because these skills come and go and get scrambled so frequently that it must be proof that he can no longer handle them. I get frustrated with giving instructions that cannot be followed or do no get followed or get followed incorrectly. 


In my life, I am used to telling or asking someone for something and then letting go knowing it will be done. Not so anymore with Gregory. So metaphorically, like the nurse in the old people's home, I will hand him his meds and stand there while he puts them in his mouth and swallows. Hope I do not have to start checking under his tongue to make sure he isn't spitting them out later.


Did I mention that last night at bedtime he was trying to read and again forgot that he needed his glasses.

 

Beep Beep Beep

Very often Gregory backs himself cognitively into a corner and once there cannot get out my help.

Very often I back Gregory into a corner and once there he cannot get out by himself or with my help.

I must be more careful to "signal when backing," BEEP BEEP BEEP.

Conversations

Sometimes I will have a conversation with Gregory after a trying exchange. I will explain why I reacted as I did and how I plan to try to react in the future. I explain my rational. Most likely he does not remember the conversation but I cannot say for sure that he doesn't. What I do know is that I cannot bring myself to change my behavior or approach to him without trying to explain it. Possibly it is my way of explaining to myself what I need to do to be a better caregiving partner and possibly my way of holding onto our relationship as a "couple" rather than being an individual making unilateral decisions. Gregory seems to appreciate my sharing my feelings with him.

This is how one such "conversation" went last night. While he was not remembering how to put on his night shirt, brush his teeth, or swallow his pills I held back and said or did nothing. I have found that if I try to anticipate his needs, guess his needs, or intervene too soon ... I only serve as a further distraction. Sometimes given enough time he will solve his own problem. Periodically I tell him that "I am holding back to give you space." He seems to appreciate that.

I have decided (for now) and told him that I do not think it is fair or respectful to him when I take over without being asked. I reviewed that we have talked about previously about my helping often being more of a distraction and hinderance than a help. I told him that if he needed help, he needed to ask for it and I would give it freely, gladly, and supportively.

But I just need to stop jumping in too soon (especially if it isn't a matter of safety.) This is a very difficult stance for me because it is very difficult for me to just watch or see him suffer and do nothing. He may or may not remember to ask for help but I will mention this every now and then as a possible reminder. Obviously I will also be monitoring his needs and make changes as needed. For example if he continues having trouble swallowing his medications and vitamins, I have found a liquid substitute. I just don't want to assume that it is needed now.