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Please Send Me Here...or Someplace Just Like It
The_Sun_Still_Rises
Posted: Wednesday, August 19, 2015 12:38 PM
Joined: 7/24/2015
Posts: 3020


I was watching this video the other night, and if I have to go to anyplace that cares for people like us...please, please, please make it some place like this...or this, I'd move countries, no problem!

https://www.youtube.com/watch?v=3zKADdgcf14

I do want to call attention to the fact that NO ONE pictured in this film with dementia is having challenging behavior...and that is what patient centered care does, makes the dementia patients happy and content.

And who is the NHS...and what is this Gold Standard Framework??? I want a place that does the same.


Michael Ellenbogen
Posted: Wednesday, August 19, 2015 1:18 PM
Joined: 11/30/2011
Posts: 3456


I have seen this before. It proves there are places that do a decent job. There are some great places in the Netherlands. They seem to do it the best. It would not work her in the US because of the type of system we have. Its all about time and money. If you have a lot of money you may be able to get some goods place here. But if you want to die early you would probably need to be removed from the facility and have a good hospice origination that is willing to work with you.


The_Sun_Still_Rises
Posted: Wednesday, August 19, 2015 3:11 PM
Joined: 7/24/2015
Posts: 3020


I just heard that there is a whole town in Belgium for people with dementia.

Somehow I think I will be moving to out of country in the coming years...


The_Sun_Still_Rises
Posted: Saturday, August 22, 2015 7:48 PM
Joined: 7/24/2015
Posts: 3020


Teepa Snow has to go on this list too...wherever she has gone and certified...I would like to follow.

https://www.youtube.com/watch?v=sUgPm8RMa48


The_Sun_Still_Rises
Posted: Sunday, August 23, 2015 8:50 AM
Joined: 7/24/2015
Posts: 3020


Reposted from the caregivers forum...please give me a caregiver like this...

re-posted from http://www.ec-online.net/knowledge/articles/joymurphy.html

By Beverly Bigtree Murphy, MS, CRC, Caregiver
More About Beverly…

"It is insufficient to consider disease in purely mechanical or chemical terms, it must be considered equally in biological or metaphysical terms. ...One sees that beautiful and ultimate metaphysical truth, which has been stated by poets and physicians and metaphysicians in all ages ...that love is the alpha and omega of being; and that the work of healing, or rendering whole, is first and last, the business of love." Oliver Sacks, "Awakenings"

I took care of my husband, Tom, at home through the duration of his years with Alzheimer’s. I did it with private home health care, respite breaks for short vacations, and what amounted to a great deal of personal determination, because I wasn’t exactly encouraged to take this challenge on. Institutionalizing Tom and getting on with my life seemed to be the only response I got when I asked for information and options, even though I expressed my desire to keep Tom home as long as possible and even though I had the ability to do it. While everyone expressed concern with my health, they all seemed to miss the point that Tom and I were going to be the ones living with the decisions, not them. As for Tom, once his disease became apparent, he ceased to have any real value outside of our immediate circle. He became a non-person who was nothing but a burden in the eyes of everyone around him. We quickly learned that once cognitive functions become affected, you are not only avoided, you are in a very real sense despised, because your very presence points out how fallible we humans really are. For some reason, keeping Tom home was to invite a psychiatric classification and when I didn’t roll over and assume the victim stance, I was labeled as overtly controlling, unrealistic and finally, an extremist. I wondered when ‘commitment’ and ‘obligation’ became expressions of emotional decay.

Even though I prevailed doesn’t mean I sailed through this experience on ‘gossamer wings.’ Like everyone else facing this care challenge I was also plagued with the self doubt, anger, frustration, outright despair and unidentified feelings of grieving that conspired to defeat us both. No one comes into this experience prepared for what is ahead and I was no exception. My decision to keep Tom home evolved as his illness progressed and as I grew in skill and confidence. The day dawned when I realized I had already been through the worst of it and his care needs actually became easier as his illness progressed. By the time he was bed-ridden we had a daily routine that both of us could depend on. That was when I realized our life wasn’t about ‘drudgery’ it was about ‘unconditional love.’ The rest of it was about tasks, and information, options, and help, and the tasks were only tasks. Surprisingly, I found myself transferring skills I already had raising my children to my husband, and what do we give our children if it isn’t unconditional love? We raise them with encouragement, appreciation, limits, and care. Do our Alzheimer family members require less?

I spent a lonely 10 years scrambling around to find solutions to the problems his illness presented. But in the end I managed to fit the pieces together, and like so many other caregivers I’ve met in my travels, I found a new way to appreciate life. The turnabout happened when I determined I wasn’t a victim, overtly controlling, unrealistic or extreme. I rejected all those labels because they were offered by people who resided at too safe of a distance from our particular reality. Instead, I took charge of our lives. It wasn’t until then that I could even envision the sanctity of the role I had taken on or see Tom’s needs in terms of a disease process and not as an extension of who he was as a human being. I am by nature a stubborn person but I was also lucky in that I had Tom. He was never a defeatist; he was someone who took what life handed him and ran with it. I remember jogging with him up Madison Avenue in New York City, just after the book, "Do What You Like and the Money Will Follow," was released. Tom stopped by a book store window and responding to the title, he turned to me and said:

"You know, being successful in life isn’t about doing what you like at all. Being successful in life has to do with learning to like what you have to do."

Those words became a life lesson for me, which brings me back to the point of this article.

  • How do you find a sense of contentment and peace and love in the face of the horror this disease perpetrates on people, on entire family units?
  • How do you feel any relationship to someone who can’t communicate their needs, their wants, or their relationship to you?
  • How do you develop any pride in accomplishing the tasks involved in this care experience when the world around you thinks you are crazy for taking on this challenge in the first place? After all, "They don’t even know who you are!"
  • How do you face this care challenge with someone you might never have had a close abiding relationship with in the first place?

The answer to that is this: You simply choose to do so.

Another Way to Die

This disease is not the result of some devastation hurled at us by an uncaring God. It is, in reality, nothing more than another way to die. It isn’t a better or worse death than any other. It is what it is, a disease process which has nothing to do with the inherent essence of who we are as people if we are unfortunate enough to get it. The fact that this disease robs us of the ability to communicate our needs doesn’t make those needs any less needful. The soul doesn’t get Alzheimer’s any more than it gets Cancer. The great reality of life is that we are all going to die someday, and although the vast majority of us would choose to die in our sleep, without pain, with our family relationships intact, our cognitive functions in order, and able to wipe our own bottoms, the fact is few of us will have that sort of death.

Most of us will need to be nurtured the way our children need nurturing and I for one hope and pray that I won’t be made to feel I’m a useless burden to those who care for me. To feel helpless and unloved has to be a fate worse than death, and if you think "Our People" [loved ones with Alzheimer’s Disease] are unable to feel those things because they can’t communicate, you are so mistaken. Those of us who do the hand’s-on, day-to-day care, know they respond to love in it’s most unconditional sense the same way a small child responds to the unconditional love it’s parent gives. That response is first developed when a child is born and it is the last thing the Alzheimer’s brain loses when the person dies.

We look to find an inherent satisfaction in our child rearing with an expectation of accomplishment and joy in the process, and it follows that we tend to find these attributes because of that expectation. There was a time in history when we also expected to find a sense of accomplishment and if not joy, certainly peace or contentment in tending to our elderly and our dying. The ‘Ritual of Death’ was as important to human development as was the ‘Ritual of Birth’ and it was important for valid reasons. Life moves in a circle from birth to death and the circle has been sacred to indigenous peoples since the onset of time. The beginning segment of a life span was not to be revered and the ending segment reviled. Both were an essential part of the spiritual, emotional, and physical growth of all people.

That has changed. Death has become abhorrent and perhaps we are sorrier as a people for that change. The irony is that avoiding the care of the dying has also deprived us of a very necessary part of our spiritual and emotional growth and perhaps the caregiving experience is the missing ingredient to our becoming more a part of our world. To be there, to help someone through the last vestiges of life has to be the greatest gift we give, next to giving birth. Instead, we live in a world that worships the quick fix and we have trouble understanding that we can’t experience the ‘highs’ in life if we don’t also live through the ‘lows.’

I once heard a Native American man speak about our place in the lives of our elderly. He began by offering…

"…that all of us, if we go back to the ancients, came from tribal people. As tribal people, we were taught that rituals were good, they gave us structure, and meaning in life, and purpose, and they kept us in a place of regard and oneness with each other."

He went on to describe a young man in his tribe who decided to stop by the house of an elder woman known to his family and someone he had lost contact with over the years as he grew. While there he noticed that she was alone with no help. A few days later he dropped in again. Over time he found himself restructuring his life so that he could make his regular visits to her, often making repairs, bringing groceries and in general looking out for her. These visits became a ‘ritual’ both of them looked forward to, a ‘ritual’ that enriched them both. Then tying this parable to our lives, he said:

" Now when you have to spend Saturday helping Mom buy groceries because she can no longer drive herself, perhaps you can learn to see that task as a ‘ritual,’ as a beneficent gift given out of love and regard instead of a task that takes time out of your very busy lives. In that way you find a positive way through the changes that confront you."

His words had a familiar ring to them and then I recalled Tom’s words, " to learn to like what you do in life." I made a concerted effort to see the tasks involved in his care as a creative exercise and a problem to be solved instead of the drudgery I was told to expect. Even diaper-changing-time became a ‘ritual,’ a chance to do the best diaper change anyone could do, the quickest, the most efficient, and the least traumatic for my Tom. Even in that I was able to find a sense of accomplishment. I realized something very important during my tenure as Tom’s wife and caregiver:

"The tasks had to be done and I had a choice: I could do them happy or I could do them mad. Either way they still had to be done."

Allowing Joy to Happen

‘Happy’ fortunately won out. Approaching Tom’s care from a place of love instead of regret made all the difference. Regret only reinforced my feeling like a victim, which was then too easily transferred to Tom. Love, on the other hand, elevated us both. It was the choice I had to make and it’s the same choice you face. Finding the joy in caregiving has to do with setting new priorities, learning to value little steps, letting go of old ideals and expectations, and accepting life as it unfolds. Even in some of our darkest moments joy surfaced because I allowed it to happen. And it happened on what can only be described as profound levels.

  • That is how you find a sense of contentment and peace and love in the face of the horror this disease perpetrates.
  • That is how you develop pride in accomplishing the tasks involved even though the world around you thinks you are crazy for taking on this challenge.
  • That is how you know it doesn’t matter if they ‘know who you are,’ because you still know who they are.
  • That is how you wipe the slate clean and begin a new relationship with your loved one, one that evolves out of love and acceptance instead of a life-time of disappointment and missed connections. There are amazing stories about caregivers and how they found a connection with their person they never thought possible.

I will be forever changed by the experience. My fear of death is lessened, I have no regrets about my life with Tom, and I am stronger and more content than I have ever been in my life. Tom died without pain, in his own bed, surrounded by the people who cared for him with his favorite music playing. If he knew nothing else when he died, he knew he was loved. As I look back on it, we should all be so lucky. He had as peaceful a death and as good a death as one can hope for, and in that I was successful. That was also part of the joy!


The_Sun_Still_Rises
Posted: Tuesday, August 25, 2015 10:19 AM
Joined: 7/24/2015
Posts: 3020


Naomi Feil...is rocking it too.

https://www.youtube.com/watch?v=CrZXz10FcVM&app=desktop


The_Sun_Still_Rises
Posted: Tuesday, August 25, 2015 10:23 AM
Joined: 7/24/2015
Posts: 3020


Naomi Feil on Validation

https://www.youtube.com/watch?v=NPsTZUTqUFw&app=desktop

"They do not become dead people...they stay communicating until they die."

She also speaks to our human needs...

And she tells you how to do it.


The_Sun_Still_Rises
Posted: Tuesday, August 25, 2015 10:25 AM
Joined: 7/24/2015
Posts: 3020


Teepa Snow & Another Person on Alz and Dementia Care For Caregivers Pt4

https://www.youtube.com/watch?v=jEFnIFvvQXM


The_Sun_Still_Rises
Posted: Tuesday, August 25, 2015 10:27 AM
Joined: 7/24/2015
Posts: 3020


Katie Saffer's Blog is a great resource...

http://kateswaffer.com/dementia/

"Posted 31 May 2012

A few ideas to think about upon a diagnosis of dementia.

Treat the symptoms of dementia as disabilities, rather than a death sentence, as you would if you lost your legs in an accident – you would either get fitted with artificial limbs or a wheelchair, go through rehabilitation, and get on with your life accommodating the disabilities.

Recently I nicknamed my husband BUB, or Back up Brain and we find this terminology far easier to live with than carer. If you think about how you use a back-up on your computer it works the same way. You don’t ask the back-up to do the tasks that the computer does, you only use it when the computer crashes, freezes or needs a reboot. We think of a back up brain as being the same as the hard drive in a computer. He said recently, it empowers him to be by my side and with me, rather than to ‘care’ for me, a very subtle but significant difference. The Scottish Dementia Working Group have a slogan, nothing about me without me. Speak up for what you as a person with dementia wants; don’t let others make decisions for you.

And so it is with my dear husband, who helps me live more fully with the symptoms of dementia. We have learned together to live with dementia, in ways that don’t inhibit or restrict me as a person, and in ways that help to keep our love alive, way above the daily changes and traumas that can also be the living with dementia. He does not take away my dignity and power to do things for myself, but instead assists me from the sidelines, there when I ask for help, or offering help if he sees me stumbling. Offering is also a key word here, as he does not enforce his opinions or help, but rather acts as my back up brain, my hard drive, the one that is fading, but with effort, and sometimes assistance, can still function well. It also empowers me to feel less of a failure, and less guilty about what is happening (failure, only in the sense of having to accept there are so many things I simply cannot do alone anymore). I am the only one on this [my] train [person with dementia] who knows what is going on in my mind. Your imagination is far worse than anything you can actually tell, and your interpretation of what you think is best for me is simply that – your interpretation.

I read a lot and come across what was happening [to me] through text books and online articles and blogs. It is almost exclusively the words of those with dementia that really ring true for me. I’m sure it is the same for the people who love and live with us.

Most of the time at least for now, I hardly need my back-up brain, but it is supportive to know it is there. Although it requires an enormous amount of effort on my part to function, I am happier doing this rather than relinquishing all of my responsibilities. Of course, many people discount this effort, thinking that there is nothing wrong with me; they don’t see my endless notes and other coping mechanisms that I have developed to maintain my dignity. It would seem to me, if you want people to succumb to dementia quicker than they normally would you should think for us, instead of letting us think for ourselves. If you want our brain to stop working then help us to stop using it. So back to BUB and how it helps us. Peter says he find it stops him trying to take over, to know when to act and how. It sounds easy, it is not, but it does set some guidelines in how to behave and handle situations.

Many talk about denial like it is a bad thing but at times we’ve found that some of the time it is a great place to be… you have to face up to the reality, BUT you can only take so much at a time, and you need somewhere to ‘hide’ for a while, for a break. It is a ‘marathon’, but you do need to rest – especially mentally – but also physically – perhaps the need for respite eventually.

As a couple, we need to plan, without my husband trying to control my life too much – It is our struggle as a couple, but it is also my struggle, and my husband is there to support and advocate when I can’t, not to live my life for me. Dementia has changed the sense of ‘us’, in that he is now probably more important to me, sort of like being my lifeline. We don’t know where we are heading but we are going there together.

We use humour, and try to laugh at the ‘symptoms’ of dementia as they come into our lives. We find our attitude is the one very small thing that can make the biggest difference. If you are not happy, then you need to change something.

Groucho Marx once said; I don’t care to belong to a club that accepts people like me as members.

I feel that way about dementia, but as I have no choice, the best way I can survive and live my life is to laugh as much as possible, to ignore the negatives as much as possible, and try to see the funny side of things."


The_Sun_Still_Rises
Posted: Tuesday, August 25, 2015 10:30 AM
Joined: 7/24/2015
Posts: 3020


Cristine Bryden's book, Dancing With Dementia


Care Partner Not Martyr

Dancing With Dementia | Christine Bryden


This quote comes from the book, Dancing With Dementia, by Christine Bryden...who has dementia (I think this comes on sub-consciously, adding in the hope of it becoming conscious):


"Adopting a sole identity as our care-giver highlights our illness and strips both of us of other identities, we have become care-giver and sufferer, in a relationship of co-dependence, You need us to be sick so you can retain your identity as a care-giver, otherwise you might feel threatened if we become empowered in any other role.

In this role, you may soon feel overwhelmed by the multitude of tasks, of remembering for two, of planning and organizing for two, or covering up our deficits, and grieving over our losses, rather than looking for what remains [of us]. You can quickly become exhausted, sad, depressed in despair. We know it is hard for you, and we treasure all that you do for us, and know how helpless we have become, but we want what is best for you too.


At the same time, if we adopt a sole identity as a sufferer of our illness, we learn helplessness. We lose more function, and show and excess disability, where more dementia is apparent than you might expect from the amount of damage we have. This will only add to your burdens as a care-giver, and exacerbate the problem for both of us. It will be a downward spiral to disaster. In this situation, we have become co-dependent, needing each other to accept our labels as victim and sufferer for our identities.


Alternatively, we might cover up our deficits and try to act as if we are normal. This too is a form of co-dependency, because we have put your assumed need ahead of our honest self expression. We want to stop you worrying, to stop this downward spiral, and we pretend normalcy. But as the disease progresses, we can't keep up this pretense, because it becomes impossible and exhausting, and we become passive and dependent. Suddenly you are faced with the burden we tried so hard to hold away from you, alone.


Co-dependency is unhealthy for both the person with dementia and their family. We can become more incapable than we really are, and you can become more exhausted that you need to be. And neither of us is honest, each of us is journeying alone with dementia, struggling without true insight as to what to do.


We need to move away from labeling ourselves as care-giver and sufferer, towards becoming a care-partnership, in which we accept, collaborate and adapt to new roles within our journey of dementia. I can become a survivor, a person with dementia, you can be my care-partner on this journey. I can be a care-partner with you, communicating my true feelings, my true needs, so you can walk alongside me adjusting and compensating for these expressed needs as we face this struggle together. In this care-partnership, the person with dementia is the center of the relationship, not alone as an object to be looked at, as merely a care-recipient. Instead, we become an active partner in a circle of care."



The_Sun_Still_Rises
Posted: Tuesday, August 25, 2015 10:32 AM
Joined: 7/24/2015
Posts: 3020


Christine Bryden's book, dancing with Dementia


Dealing With Stigma

Dancing With Dementia | Christine Bryden

From the book, Dancing With Dementia, by Christine Bryden (who has dementia):

"Living With Stigma

Do what you can to prevent the stigma of dementia. We people with dementia have two burdens from our disease. The first is the struggle with the illness itself. The second is the battle we have with what I call the 'disease of society.' Dementia, and the type of dementia called Alzheimer's, are a disease of society as much as they are a disease of a person.


Stigma is a social issue separating the world into two perceived compartments, by labeling and lack of understanding: that of dementia, and that of 'normal.' This stigma we face, where the stereotype and myths surrounding dementia perpetuate an attitude that isolates us, into separate, walled compartment of dementia.


Until this wall created by stigma is removed, people will not seek help, nor even seek diagnosis, and they will be denied the treatment and support that is available to them. Living with dementia, we need to be free of stigma to feel respected and empowered, and to know we can live a new life in the slow lane.


Our world become circumscribed by the stigma of our illness. We want to retreat in shame, and do not want to 'come out' and tell people the diagnosis. It is not surprising that that some of us react by denying that anything is wrong, and our families do too. Better to pretend at normalcy that to face up to the challenge of dementia.


If we do believe the lie of dementia, that we can't learn new things, remember anything reliably, or find our way around, we are blindfolded to our own potential. We withdraw into helplessness and let our families take over. Our inner world is in turmoil as we suffer anticipatory grief at loss of self. We may be overwhelmed by feelings of anxiety, anger, sadness, fatigue, shock, helplessness, and numbness as we try to come to terms with losing ourselves as well as others.


Please don't call us 'dementing' - we are still people separate from our disease, we just have a disease of the brain. If I had cancer you would not refer to me as 'cancerous,' would you?


Our labels mean so much - am I Alzheimer's Disease or fronto-temoral dementia, or simply someone with a 'dementing illness'? All these terms label us as someone without capacity, without credibility, as a member of the community. How about separating us from the illness in some way? How about remembering we are a person with progressive brain damage?


Be very alert for discrimination against people with dementia. Treat us like a normal person and never speak about us in the third person when we are there. Don't criticize, find fault or laugh at us, or speak as if we are no longer there, and certainly do not do everything for us. Respect us and realize how hard we are trying to cope.


Don't categorize us in terms of stages of the disease. This is meaningless at the individual level. Our cortex is wired up according to our own unique learning and experience, so we vary in how we react to damage in any area of our brain. We need to be treated as an individual, with unique capabilities.


Focus on our abilities not our deficiencies. Treat us as a person, never as a statistic, and involve us in life. Help us to continue activities that we enjoy - whatever helps us feel valued, appreciated, and still a part of society."



llee08032
Posted: Tuesday, August 25, 2015 8:34 PM
Joined: 5/20/2014
Posts: 4405


Sun,

Your catching on to all the good stuff so fast! Teepa, Naomi and Kate. There are times when I feel they know what I am thinking/feeling and put words to it!

The_Sun_Still_Rises
Posted: Wednesday, August 26, 2015 11:44 AM
Joined: 7/24/2015
Posts: 3020


Another great post from Teepa - Accepting The Challenge (of caregiving). This one is all contained in one long video, and makes a good starting point for linking to others:

Teepa Snow | Accepting The Challenge (of caregiving someone with dementia)

https://www.youtube.com/watch?v=i4pQaZykZls


The_Sun_Still_Rises
Posted: Monday, November 2, 2015 6:59 AM
Joined: 7/24/2015
Posts: 3020


I'd happily go here!

---------------------------------------------------------------------------------------------------

Group Homes Australia

http://kateswaffer.com/2015/11/02/open-letter-to-group-homes-australia/comment-page-1/#comment-61527

"The whole time, I was looked after as if I was a member of their family. It also appeared to me that those paying for their ‘accommodation’ otherwise known as ‘residential care’ were being supported as if they were family. This style of residential accommodation and care is the best I have seen in Australia, and I would be keen to visit other countries to compare their versions of ‘group homes’ or dementia villages, although already doubt anyone is doing it better.

What I felt when I was driven up to each of the three group homes I visited, was that they were indistinguishable amongst all the other residences in the street and suburb. They did not have emblazoned on the front door or gate “Group Homes Australia”. They preferred instead, to ensure the dignity of those living there, and finding other ways to promote themselves. As I entered each home, there was a lock to the front door, but, if it was my home, I would also lock out any possible intruders or visitors, only allowing them entry upon ringing the door bell. So, not locked in, simply doing the same as I would do in m own home.

Upon entering each home, all with its own individual style and flair, and the feeling of being a guest in someone’s home was overwhelming. I definitely had no sense I was visiting a ‘facility providing residential care’. There were people in rooms folding up the washing, staff and residents in the kitchen preparing meals; smells of cooking, and not a hint of urine. Doors that opened out onto gardens and recreational areas, with washing lines, and one even with a swimming pool. Laundries in working order, various areas to sit and relax or play cards or watch television. Freshly cut flowers around the homes. Rooms, some with en suite bathrooms, some not, just like most private homes. Many with double beds, and individualised furnishings and personal belongings. Picture frames around the homes, belonging to the people living there, corners with nick-knacks of meaning, not meaningless, cheap pastel prints on walls.

Staff who sounded and looked like family members. Family members sitting around relaxing waiting for a mother to return from some shopping. Dining rooms, allowing for mingling and shared meals, and smaller eating areas allowing for more privacy. Meals also served in bed rooms, and at times suited to each individual. The Finance Director had not had lunch, so he joined the group in the kitchen to make himself some toast. It felt, looked and sounded like one big family, sharing time together.

It was easy to chat to the residents of these homes; every person on site seemed at home, and at ease, and it looked … and more importantly, it felt like I was visiting them in their own private homes. Unusually, the founder and CEO, the senior staff, the new staff, the less senior staff, and the volunteers, and those living on the homes were all ‘working’ together, no sense of hierarchy or management, pay-role differences or class distinction. In fact, there was no sense anyone was even working!

It was also hard to tell the staff apart from the residents, other than by age. It felt like everyone either lived there, or was a family member visiting. An office in a garage of one of the homes, part of which is also used for storage for those things necessary for people requiring 24 hour assistance to live, felt like a ‘normal’ attachment to the home, rather than a working office. The accountant wearing the gorgeous shoes (yes, my middle name could be Imelda!) attended the Leaders session the next day.

Quite frankly, having had to help find three beds for close family or friends requiring residential care, and having had to actively consider it for myself, this is the FIRST time, and ONLY time, I have felt I would or could move into ‘residential care’. As a person living with a diagnosis of dementia, I cannot tell you how much of a relief it felt to see someone who ‘gets’ it, and who has taken such a risk (financial, and professional) by refusing to do it as everyone else is doing it, and following their intuition, their heart, and actually ‘doing it’ so well. Someone brave enough not to wait for evidence, or regulation, of government funding to support a new model of residential care.

I may have helped this terrific group of people feel like they are on the right track with what they are doing, perhaps even validated this in some small way for them… but the gift that you have all given me, is that I was right to speak out at all, and to keep speaking out for ‘better’, and for what in my heart and soul, I felt ‘needed changing’. Like them I do not necessarily have the evidence based research, but my heart, my soul, and my practical experience as a family care partner, and as a person with a diagnosis of dementia, told me what the sector has been doing is not only been wrong, it is against our human rights."

 


The_Sun_Still_Rises
Posted: Monday, November 2, 2015 7:02 AM
Joined: 7/24/2015
Posts: 3020


And of course, please send me to the dementia village:

 

What I heard about this village from someone who visited there, is that the average time the residents spend bedridden before death is 2 weeks. And none are given anti-psychotics. It is the SAME price as any other nursing home in the Netherlands.

----------------------------------------------------

CNN's World's Untold Stories: Dementia Village

https://www.youtube.com/watch?v=LwiOBlyWpko

-------------------------------------------------------

https://en.wikipedia.org/wiki/Hogewey

Hogewey, is a gated model village in Weesp, in Netherlands. It has been designed specifically as a pioneering care facility for elderly people with dementia.[1] The benefit of using all-day reminiscence therapy at Hogewey, compared to traditional nursing homes, is that the residents with dementia are more active and require less medication.[2] The setting has been compared to that depicted in the film The Truman Show.[3] Carers, doctors and nurses work around the clock to provide the 152 residents the necessary 24-hour care.

The Hogewey complex is set out like a village with a town square, supermarket, hairdressing salon, theatre, pub, café-restaurant—as well as the twenty-three houses themselves.

The doctors, nurses and carers aim to make the experience as real as possible to the residents. Residents do the necessary shopping at the supermarket and assist with preparing and cooking as they would at home.[4] The carers wear normal daytime clothing rather than clinical clothing, and fit into a role that the dementia sufferers are likely to be comfortable with; in the working class households the carers are seen to be neighbours or carers, while in the aristocratic/upper class setting, the nurses act akin to servants.[1] The different living styles have different types of music playing, significantly varied interior design, food and methods of table setting.[1] Residents within each house have their own large bedroom and then meet with other residents to share the living room, kitchen and dining room.[4] There are no locks on the doors and residents are free to walk or cycle around within the village, including choosing to visit the supermarket or cafe.[1]

The village employs 250 members of staff.[4] In order to maintain the "fake reality" (hyperreality) that those living at Hogewey are comfortable with, the staff are instructed not to correct the residents as the residents are talking about memories, background and history.[1] At the same time, the staff will not deceive the patients if directly asked, truthfully stating that the residents are in a place where they can receive required care for their condition.[3] Because of the nature of Alzheimer's disease and dementia, the sufferers remember the distant past, rather than the present, so even truthful answers given by the staff will be forgotten quickly.[3]

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The Amazing Village in The Netherlands Just for People with Dementia

http://twistedsifter.com/2015/02/amazing-village-in-netherlands-just-for-people-with-dementia/

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An Unconventional Village

http://viralfactsfactory.com/dementia-care-what-in-the-world-is-a-dementia-village/

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llee08032
Posted: Monday, November 2, 2015 7:47 AM
Joined: 5/20/2014
Posts: 4405


I am not aware of any group home settings specif to PWD here in the USA? There are many group home settings for persons with mental disorders/ and intellectual disabilities throughout the country. The effort came about to get persons out of mental institutions and psychiatric hospitals and to integrate theses persons into the community in a normalized setting, home-like, family style environment. It makes sense that these settings could be duplicated for PWD as well, vs an institutional setting. It cost a lot less money to care for a person in a group home vs an institution which is a great selling point and something that needs to be advocated for.
The_Sun_Still_Rises
Posted: Thursday, December 17, 2015 8:38 AM
Joined: 7/24/2015
Posts: 3020


Here is another one of those great places, thanks jfkoc for sharing.

 

 https://www.abesgarden.org/

 


The_Sun_Still_Rises
Posted: Thursday, December 17, 2015 8:39 AM
Joined: 7/24/2015
Posts: 3020


This guy can train my carers...

Dr. G. Allen Power...worth watching.

Someone turned me onto this guy, thought I would pass it along...he is right up there with Teepa Snow.  Enjoy.

https://www.youtube.com/watch?v=e51UzWBpGR0

 

 


The_Sun_Still_Rises
Posted: Tuesday, December 13, 2016 9:18 PM
Joined: 7/24/2015
Posts: 3020


Just bumping this thread of some fabulous places that take good care us...
The_Sun_Still_Rises
Posted: Saturday, February 25, 2017 6:37 AM
Joined: 7/24/2015
Posts: 3020


Bumping, for Iris (and others) this the thread I started long time ago....put all the resources of great places and people for us. 

<3


The_Sun_Still_Rises
Posted: Saturday, February 25, 2017 11:37 AM
Joined: 7/24/2015
Posts: 3020


They must have removed half my posts on this....because I had that video from the place Australia where they do our bucket lists...and a number of different care homes.  I thought I had like 35 places on here.   Ugg...what a huge loss. 

<3


The_Sun_Still_Rises
Posted: Saturday, February 25, 2017 9:01 PM
Joined: 7/24/2015
Posts: 3020


I don't even know how go about find the links....but lately I have been hear about those Care Homes that bring preschool classes in do art projects with the residents - LOVE THAT! 

And there that Care Home in which students in college stay there for free in exchange for help out with the residents - LOVE THAT A LOT! 

I have probably heard about 10 different ones of these types things, each slightly different - but YES, send me there, or someplace like it. 

<3


The_Sun_Still_Rises
Posted: Saturday, February 25, 2017 9:02 PM
Joined: 7/24/2015
Posts: 3020


Then there the guy, who's American family dumped him in the UK....he getting excellent care....please, send me there.

<3


The_Sun_Still_Rises
Posted: Saturday, February 25, 2017 9:03 PM
Joined: 7/24/2015
Posts: 3020


And then, there the AWESOME place that Michael Horvich sent Gregory...and it was Medicaid paid, Liberman or something like that in Chicago....by all means, send me there.

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The_Sun_Still_Rises
Posted: Saturday, February 25, 2017 9:05 PM
Joined: 7/24/2015
Posts: 3020


I keep a file these places at home, it helps me feel that all not lost when things getting at me....please feel free chime in any great places you know. 

Many Thanks.

<3