Helping the Helpers – EVERYONE can make dementia care better!

This is an inspirational and educational post – yea! The idea is that EVERY SINGLE ONE OF US can help to improve dementia care. You don’t have to be providing direct care to make a difference in someone’s life. In fact, it could be as simple as smiling and holding a door for someone else.

If you think you are too small to make a difference, try sleeping with a mosquito. 

~His Holiness, the 14th Dalai Lama

Family members to provide personal care to someone with dementia are more likely to have higher levels of stress, higher rates of depression, and more health complications than people who care for other conditions and than non-carers. They are absorbing a lot of care responsibilities as dementia progresses and sacrificing their own privacy, personal time, relaxation, social activities, and often self-care activities. They are selflessly giving themselves to benefit someone else. And if that doesn’t bring some humanity warmth into your heart, then you need to watch some videos on kittens or something and then come back and read this post.

I have a ton of respect for family care partners. They are amazing, special people. 

And I kinda want everyone else to realize this as well. 

If you know someone who is a carer, you can lend a helping hand! And by doing even small things to make their day brighter, easier, and less stressful, you are not only helping them out but also helping to make them better able to provide care for someone else.

They may be hesitant at first, but if you really mean it, keep offering and give specific ideas of what you can do for them. Here are 20 ideas of how you can make a difference. ANYTHING will be a help. If you try any of these out, I would love to hear about your experiences in the comments below.

Happy helping 🙂

  1. Have a short coffee or tea break and hang out for 30 minutes of easy chatting
  2. Help them with laundry – offer to pick it up and bring it back all clean the next day, or spend time with them and help them sort and fold laundry in their own home
  3. Offer to wash the dishes
  4. Offer to bring over dinner “I doubled my recipe and have enough for 2 families, can I bring over some?”
  5. Clean out or wash their car
  6. Let them know that they can call on you for support
  7. Mow their lawn or rake their leaves “I’m doing yardwork this weekend, can I come over and do yours while I’m at it?”
  8. Shovel snow off their sidewalks
  9. Offer to clean their gutters in the Spring
  10. Put their garbage bins back after collection day
  11. Bring them their mail
  12. Hold a door for them
  13. Ask them how they are – but be sure to LISTEN to them as well
  14. Let them know you are going to the grocery store or pharmacy and ask if you can pick anything up for them
  15. Offer to sit in for them for a few hours one day so they can run errands, exercise, or have alone time
  16. Give them a gift certificate for a massage, pedicure, whatever they might enjoy, and offer to sit in for them during that time
  17. Send a card
  18. Make a phone call
  19. Send an email or text message
  20. Offer to pick up their kids from school or activities, or to take their kids for a slumber party night
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Alzheimer’s Association Denmark: 7 tips for how to help a person with dementia

Do you know someone with dementia? Do you have a hard time figuring out how to talk to them or what you can do to help? Are you not sure how to talk to friends about a recent diagnosis of dementia in your family? This article is from the Alzheimer’s Association in Denmark and gives 7 tips on how you can help a person with dementia (and help yourself to learn more about it on the way).

Happy reading and I hope it brings good experiences!

I have made my own translation from Danish, so some of the words may be changed, but the meaning has been preserved. I have also removed the videos, as they are in Danish. Dette indlæg er oprindeligt på dansk, læse det her (og med videoer).

“I love you, but I can’t remember who you are”

7 tips for how to help a person with dementia 

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After-hours program for people with dementia

This article from The Atlantic highlights a program in New York called ElderServe At Night. It’s a care program for people who have dementia, working the dusk-til-dawn hours. The program aims to serve people who become more active at night as their dementia progresses, and to provide respite for caregivers who tend to lose sleep and have poorer sleep hygiene due to these nighttime activities.

Starting from 7pm, ElderServe will pick up individuals at their homes and provide a range of activities like painting, socialization, dancing, and massage. They can even be showered, fed, and ready for the new day when they start to be driven back home at 7am the next morning.

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Q&A: Do we continue family vacations with Alzheimer’s?

I came across this question on a Danish caregiving forum (DemensNet.dk) through the Danish Alzheimer’s Association (Alzheimerforeningen), and thought it would be relevant to include here. The questions are not uncommon to family situations, and the answers are superb!

Danish summer houses

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10 Virtues of Caring

I came across this post on Huffington Post. I think this is a great article! Great advice and given from someone who is living it. At the end, she says she’s no expert, but many would beg to differ. An expert, by definition, is someone who is knowledgeable about or skillful in a particular area. I would say her direct experience as a caregiver would at least qualify her as an expert in her own mother’s dementia. And she conveys her information in an easy-to-understand way – also an important quality that experts should have.

Go ahead, have a read, and let me know what you think in the comments. Do you find these also to work for you? Do you have other “virtues” you would include in the list? Don’t be shy, let us know what you think!

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Film review! “Mennesker Bliver Spist”

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While I have been waiting for Still Alice to come out here in Denmark (in March, 2015), another film about dementia has come across my radar. It’s a Danish film that premiered February 26, 2015, called “Mennesker Bliver Spist,” which means “People Are Eaten.” With a title like that, I was expecting some nod to people being (figuratively) eaten by Alzheimer’s disease or other dementias, how they are consumed in a holistic manner, or something along the lines to that. But, the tag line in the image below means “Sometimes you need to go far away to find your way home.” And, now I was not sure what to expect. So, I took myself to the movies on opening night to find out.

Well, first things first, the title comes from a popular Danish song by John Mogensen from 1975, called “People are eaten in Polynesia.” The main character, Herluf, who is played by director and writer Erik Clausen, loves the song and is singing it at a street festival in the first part of the film. Here, he loses his words and cannot follow along with the verses as he normally could, and his daughter makes a comment that he is so drunk he can’t remember the lyrics.

I wasn’t able to find a review of the film in English, so as far as I know, this is the only one out there! So, in this light, spoiler alert! If you are interested in seeing it, I hope that there will be English subtitles one day 🙂 In the meantime, you can view the trailer (in Danish).

We are first introduced to Ingelise, the wife, at her social work job. She is talking with an unemployed man with a drinking problem who we gather is also a delinquent father. She is patient, calm, and kindly tells him to get his act together, after all, people are eaten… After the client leaves her office, we meet her workplace lover. Who is noticeably more handsome than Herluf, her husband. We also see Herluf at work as a mechanic. He is test driving a car as part of his work and we see him stopping to ask for directions back to the garage. When he gets back, he is flustered and easily annoyed by the loud music that the younger employee is playing while Herluf is working on another car’s brakes.

There is a street party in the neighborhood where Herluf and Ingelise live, something that Herluf is very much looking forward to. Here is the scene where he is singing the title song and forgets the lyrics.

We meet his daughter, her fiancé, and her son from a previous marriage, who is close with his grandfather. The daughter is an independent woman, doesn’t like to be called “little lady” by her father, and we get the feeling that she feels she has outgrown her roots. Later, there is a scene where Herluf is telling Ingelise that he doesn’t think their daughter likes him and that she has never said she loves him. In a very Danish way, Ingelise responds that that’s not something people just go around saying, that only happens in the American movies 😉

Herluf’s boss comes to his house to talk to him. He asks about the brakes he fixed for the woman and her daughter who were waiting the other day. Herluf says if he said they were fixed, they were fixed. The boss tells him that they were not fixed and that the woman and her daughter got into a bad car accident after leaving the shop. No one was killed, but people were injured and they want to press charges through the police. He takes Herluf to the police garage, where they can look at the car. Herluf is visibly shaken, but insists that he did not cause the accident and that the brakes were fixed. The boss tells him to take a few days off work to think about things.

Then there is the wedding of the daughter and her fiancé coming up. Herluf is to give a speech. It is common at Danish weddings that the father gives one of the first toasts. He tells his wife that he is taking some days off of work to write the speech and prepare for the wedding; he doesn’t mention anything about his recent problems at work. We see him sitting in a café working on his speech, and he gets a visit from a friend. The friend asks if Herluf is now retired or why isn’t he at work during the day, to which Herluf says he is taking some vacation days to prepare for the wedding. The friend goes on to talk about how now that he is retired, he spends his time at the car auctions, where he can buy cars to fix up and then sell for a profit. Well, he doesn’t remember the friend and can’t place him even after the friend says how they knew each other. And Herluf starts talking oddly, about how a woman was bicycling past on her Buick and such. The friend laughs at what he thought was a joke and leaves Herluf to finish his writing.

Erik Clausen får problemer med hukommelsen og hans kone Ingelise er utro med en kollega.(Foto: Susanne Mertz)

At the wedding, all are having a good time, and Ingelise clinks the glass and announces it is time for Herluf’s speech. He starts, stumbles, and recovers by saying how strong of a woman his daughter is, and how strong her mother is, and in a family of strong women, he would like to give the mother the chance to make the main toast. She accepts, comments on how clever he is, and makes her toast. No one is any the wiser that Herluf forgot what he had been rehearsing to say.

Lærke Winther kaster sig i rollen som Erik Clausens datter i filmen ud i sit tredje ægteskab. (Foto: Susanne Mertz)

The next day, his wife leaves to “visit the daughter” (she went to her lover’s place) and Herluf is packing down the tent from the wedding reception in their back yard. The police arrive and ask for Herluf. He says that he is another man, just taking down the stuff from the wedding, no Herluf here. The police leave, and Herluf leaves. He goes to the automobile auction where the friend (from the café) goes to buy cheap cars, fix up, and resell. He finds the friend but keeps calling him Bjarne, is not making sense, and is getting more frantic. He tells “Bjarne” that his brain is acting funny and he is terrified the doctors will tell him he has dementia. The friend, embarrassed that Herluf is acting frantic and odd, disappears into the crowd. Herluf, caught up in his own confusion and in the action of the car auction, bids and bids and bids to a very high amount on a car. Later, he is at the bar (there is usually a pop-up bar serving beer at nearly any Danish function) when the auction cashier asks him to go to another desk to pay for the car. Herluf knows nothing about a car, insists he paid for his beer, that he has his own car that he drove there in (which he left the keys in), so why would he pay for another car. He decides to hide from this man and ends up near some Polish men who are trying to get a car started so that they can sell it. They are regulars at the auction house, who fix up Polish cars and drive them up to Denmark to make a profit (cars are very expensive in Denmark due to high import taxes – no cars are manufactured in the country). Herluf hands one of them his beer and starts working on the car. One of the men comments that he has never known a Dane to give away his beer. 🙂 He gets the car to start and everyone cheers. Herluf then sees the cashier for the auction and hides on one of the trucks loaded with cars. He gets into the front car on the top row to lay low, and the next thing he knows, the truck is taking off and on the highway and has no way to make it stop or to get off.

In the meantime, some younger adults have noticed the keys in Herluf’s car and take it for a joy ride. Ingelise has come home to find the doors open, the tent laying in the backyard, and no sign of Herluf at her house or her daughter’s.

Herluf wakes up in a small bed in a Polish garage. He is disoriented and doesn’t speak Polish, so wanders into the shop and starts working on cars. The Polish men love that he is doing good work for free, although they obviously can tell he is not well. They joke that they have mistakenly stolen a Dane. 🙂 In all, he stays with them for about a week. Fixing cars, eating meals, drinking vodka, and sleeping in the small bed in the back room. They have a woman who comes to cook for them there in the evenings; she has red hair like Ingelise and Herluf believes it is her. He comments on how great it is to be with her again and it’s the most important thing that they are together. It was very touching and sweet. There are one or two scenes where Herluf takes off walking, finally to be found by one of the Polish men who explain to the angry produce seller that Herluf is ill and didn’t mean to steal, or they find him wandering down a street. The one time that he stole fruit, he later arranged it on a hub cap as a gift for the Polish woman, who he thinks is his wife. Herluf is getting more confused and is showing less ability to decide his own actions. He also starts reciting the speech he made for his daughter’s wedding.

When the men are ready to drive more cars up to Denmark, they load Herluf into the truck, give him some vodka so he will fall asleep, and start their journey.

Meanwhile, back in Denmark, no one knows where Herluf is. The police have found his car near some woods but no sign of him. Ingelise goes to Herluf’s work to see if he has been by there and lets them know that he is missing. She also learns a little bit of information that Herluf has had some problems at work (the brakes). Family starts coming in from out of town, friends organize a search party, the whole group pulls together. Ingelise breaks it off with her lover, realizing how much Herluf means to her now that she has no idea where he is or if she will see him again. She also takes some time off of work while he is missing. The daughter reluctantly cancels her honeymoon, which her son and her new husband push her to realize is the right thing to do. At one point, the daughter is leading the group in meditation, which got a few laughs from the theatre audience. Here, Ingelise says that she would like if everyone sings Herluf’s favorite song, “Mennesker Bliver Spist,” and that maybe he will somehow be able to feel how much they all care for him. During the song, there is a phone call. The police have found him wandering around (he had been dropped off at a gas station by the Polish men when they returned to Denmark).

When the police bring Herluf back to his house, everyone is standing outside waiting for him. A group of about 10 – his wife, daughter, son-in-law, grandson, sister-in-law, brother, friends – are anxious to know if he is ok and where he has been. Herluf is helped out of the car by the police and is in dirty clothes. He does not recognize the house, and turns away to walk down the street. This is the first time the family and friends notice that something is not right with Herluf. The police escort him up to the house, where Herluf doesn’t appear to recognize anyone, and they leave. Ingelise helps him shower, which is an emotional scene. Then, everyone gathers for a picture. All are looking at the camera except Herluf, who keeps looking out the window. The daughter tried holding his head straight for the picture, but he looks out the window again as soon as she moves her hands.

The film ended and I started to put on my coat. I have noticed that, when I go to watch movies in the theatre here in Denmark, that many people stay seated through the end credits. Not necessarily talking about the film, but they do stay seated. So, I was the only one who got up to leave. I went to the bathroom and “How Great Thou Art,” was playing on the speakers. I shed a few tears during the film, mostly at how scared and confused Herluf must have felt, but they really started to flow once I heard the song in the bathroom. I could practically hear my Grandpa Warren’s tenor voice back in church. He was great at that song. He was a great singer in general, but this song always makes me think of him. He had had several TIA strokes and eventually developed dementia. The dementia became obvious while I was studying for my PhD in technologies for dementia care, and he was the first (and so far only) family member I have known who had dementia. It’s a whole ‘nother thing when it’s one of your own family members. For sure. He passed away in May, 2013, one month after Grandma passed away, and he was buried on his 91st birthday. I think that the song choice was certainly an odd one to be playing the the common areas of a movie theatre anywhere, but especially in a country where religion and church attendance are not central to the society. I was happy to have the common area to myself to let some of the emotions out.

I later learned that a famous musician (in Denmark), Kim Larsen, had written a special song for the film, called “Into the Darkness,” so perhaps everyone was staying to listen to the song.

So, now that I’ve described the highlights of the film, time for the reviewing part. First, I have to start by saying that there is so much Danish culture in this film! It even surprised me, although I am not sure why since I have lived here for nearly 10 years and have seen many Danish films. From the slighting tone of dealing with the unemployed person, to the song which gave the film its title, to the Kim Larsen song, to the scene of the street fair and how very, very Danish it was. There was one joke, where Ingelise was explaining to a friend that Herluf’s brother, Bjarne, kissed her at the wedding dance, and she was worried that Herluf saw and maybe that is why he had left her. The friend was asking why this would be a problem since it is not like Herluf to leave her over such a trivial thing. Ingelise explained that years ago, Bjarne switched to another political party and the two brothers had a falling out. The punchline was that the friend was shocked that she kissed someone from the Danish People’s Party (Dansk Folkeparti – a right-winged party)! I like that the film was so rich in culture.

One thing I found very interesting about the film, was that the Polish men took such good care of him. Granted, they didn’t give him a shower, but they fed him, included him in their social time (usually involving beer and vodka), went looking for him when he wandered off, and appreciated that he was an excellent mechanic even though they could tell he was ill. I imagine it would be so disorienting for a person with dementia to suddenly be in Poland, where they cannot understand or speak the language, they don’t recognize anyone or any place. I also appreciated the intergenerational aspect, as the special bond between the 13 year old grandson and Herluf was apparent and consistent. They were buddies and cared for each other deeply.

The acting was fantastic in the film! Erik Clausen as Herluf did a great job of acting like someone with dementia. It wasn’t over the top or so obvious, but slight and largely through facial expressions and in his silence. All the actors did a great job, no one stole the spotlight and the film came together wonderfully. I think the film did a good job of showing how confusing dementia was for Herluf, when he couldn’t recall the brakes he had worked on, but insisted that they had been done if he said they had been done, when he didn’t understand that he was bidding on the car at the auction or why the cashier was trying to make him pay for one, when he mistook the Polish woman for Ingelise and knew that he wanted to be near his wife.

However, if this were a real situation, I would suspect that Herluf’s dementia was caused by an infection or maybe a nutritional deficiency, and could likely be one of the reversible types of dementia. In the span of a week or so, he went from having milder memory problems but still being able to drive to the auction that his friend had told him about and knowing how to elude the police, to not recognizing his house or family, not able to bathe, and barely able to speak. True, every person’s dementia progresses differently, but it would be a rare type of dementia to go from mild to severe in less than 10 days, and the progression would indicate that there is something more rapid going on. (I am not a Medical Doctor, so please don’t take this as a differential diagnosis, it’s my professional opinion based on what I saw during the fictional film). So, in this sense, I don’t think that the film gives such an accurate portrayal of dementia or how it typically progresses. Someone who may know very little about dementias and saw this film would get the impression that once you have dementia, you quickly become this stereotypical image of a person who cannot do anything for themselves. In actuality, most dementias progress over years and many people are fairly high functioning up until the moderate or late-moderate stages of dementia.

All in all, it was an entertaining film, mixing drama and comedy without either one being overpowering. In the trailer, above, it’s described as “a serious film with humorous side effects.” It has cultural aspects that you wouldn’t find in non-Danish films, which makes it unique in the world of dementia-related films. My only criticism would be an inaccurate portrayal of how dementia typically progresses, which doesn’t really educate the public on how dementia really is, but I guess that is not the intent of the film. And this criticism, I can turn into an opportunity to discuss with others about how there are reversible dementias, how the most common types usually progress, and how people with dementia can still be highly functional members of their families and societies. It certainly opens a dialogue.

If you can see it (I know, I know… it needs English subtitles to reach a wider audience), I recommend it!

Thoughts from Erik Clausen


Erik describes his own thoughts on aging and dementia, as I have translated from the Danish weekend newspaper, Søndags Avisen (The Sunday Paper).

Erik Clausen’s 72-year  life has, in his own words been, “far, far more past than future.” The recognition does not change his philosophy that people every day should play with imagination like a child to prevent the brain from becoming a lax muscle.

He does not see life finish before he is over 100, but his upcoming film, “Mennesker Bliver Spist” has nevertheless put his thoughts on overtime. For the lead role in the film, which Clausen himself performs, (the character) collapses mentally and disappears both physically and mentally into the dementia mist.

“It is a sore point, because when I made my film and worked so much with dementia, the disease came in under my skin, and I probably should have a weaning period afterwards,” says Erik Clausen. “I experience all the time that there are things I cannot remember, but it has always been that way. I am very distracted, but suddenly I think, ‘damn, now it sneaks up?'” says Erik Clausen, who got the idea to make a film about dementia when the syndrome came close to him. “The story came to me when a few years ago, one of my old buddies got dementia one year. Suddenly I faced someone I knew well, but he just went straight past me. On the other hand, he still seemed good for the young girls,” says Erik Clausen and smiles to himself.

He has spent his whole life trying to tell – both as a street performer, painter, songwriter, critic, and film maker. He is known to speak, but now he struggles to find the next word that tells how it was to see a lifelong friend simply walk past him – not in anger, but in ignorance. “It was a shock,” he says, and continues, “and I didn’t tackle it well at all. I didn’t understand what was going on, and I tried to make contact with him, but failed. I met him several times when he spoke in tongues and repeated himself. I gave up quickly, and a short time after, he moved into an institution where he walked and smiled until he died,” said Clausen, who, in his film, plays a man who no longer can recognize his loved ones.

PEOPLE ARE EATEN

Erik Clausen has written the screenplay and instructed and played the lead role in the film, which is about the mechanic Herluf, who has begun to forget small and big things in everyday life. One day he doesn’t come home like he usually does. Only then does the family find out how much they love him.

Bodil Jørgensen plays Herluf’s wife, Ingelise, in Clausen’s new film “People are eaten.” “In my family, it was my mother who slowly lost her memory. My father followed her in an intricate way, in and out of reality. He continued to see my mother as the woman he loved – and that story I would also like to tell here together with Erik,” says Bodil Jørgensen, for the first time working in an Erik Clausen film.

I cannot accept dementia

Erik Clausen has his own defense against aging and age-related diseases.

“I cannot really accept lifestyle diseases. I argue that they come because we use our brains wrong and our imaginations not enough. The brain is a muscle that must be exercised, but modern people are programmed to do the same things all the time. At the same time, there is pressure on us. We need to eat healthy, we need to be in good shape, and there are expectations we should life up to. That means that one feels wrong, too fat, too thin, too green, too blue, or whatever the hell you feel now. That presses people over in the defensive, and then we stall. If we keep our brain going, I don’t think that it will collapse. It is a naïve stance, but it is the starting point for my life,” says Erik Clausen, who himself lets thoughts and imagination run free when he hears music and paints – or is in grandchildren’s rooms.

More suffering with dementia

Dementia is the term for a condition where the mental capacities become weakened by illness. The word “dementia” comes from Latin and means “away from the mind.”

In Denmark, it is estimated that around 90,000 people are affected by dementia (50,000 of those having Alzheimer’s). 3,000 of the people in Denmark who have dementia are under the age of 65. As of January, 2015, there are 5.6 million people living in Denmark.

The risk for developing dementia increases with age, and as a result of the increasing life expectancy and the growing elderly population, it is expected there will be a significant growth in the number of elderly people with dementia in the coming decades. It is estimated that 15,000 new cases of dementia are diagnosed every year in Denmark, but around 65% get an “unspecified dementia” diagnosis.

The direct cost of dementia in Denmark is estimated to amount to 9.5-15 BILLION Danish kroner per year ($1.35-2.14 Billion per year.

Source:  National Research Center for Dementia

While I completely agree with Erik Clausen’s stance that people should use their imaginations and exercise their brains like a muscle, this alone would not prevent dementia in all people. Furthermore, lifestyle diseases do not come from not using our imaginations or from “using our brains wrong.” They, of course, come from our lifestyles and the choices we make throughout our lifecourse. Whether or not we exercise, eat healthy, smoke and drink to excess, socialize or isolate ourselves, etc. From his interview, we are also given some insight into why Herluf’s dementia progressed so quickly in the film – as one of Erik’s friends had dementia which progressed quickly over a year. It is interesting to hear both from a friend who witnesses a fast progression of dementia over a year (Erik’s description) as well as from a daughter who saw her mother slowly lose her memories and her father provide what sounds like very compassionate care (Bodil’s description). Finally, I don’t like the subtitle “more suffering with dementia,” but it is the translation. I also added some more data from the Research Center for Dementia’s website.

Hope you liked my review – leave a comment and let me know what you think!

Real stories of dementia adventures

I was searching for stories of dementia adventures online, and I was led to a discussion thread on Alzheimer’s Society’s website. It helps to hear what others have been through and how they handled it. Feel free to read their stories and share one of your own. Click on the title below to go to the site.

Dementia adventures…

I just thought I’d create a thread where we can write about the ‘adventures’ we’ve had with our loved ones that have dementia. The thread can be useful for others who can use view it as tales of caution, and a stress relief for the others, because I don’t know, I get a weird need to giggle when you have one of these ‘adventures’ and survive it unscathed!

Lewy Body Dementia and an Adventure Attitude

I came across this book while browsing online. It’s one woman’s account of being a caregiver for her husband with Lewy Body Dementia (LBD). You can purchase a copy of the book on Amazon.

Living with Lewy Body Dementia: One Caregiver’s Personal, In-Depth Experience

By Judy Towne Jennings PT MA

What worked for us was assuming an “Adventure Attitude.” As we negotiated our way through the onslaught of LBD problems, we also created a memorable story. We took three cruises in five years, two of which were in Europe. We loved to travel and didn’t let LBD stop our trips all over the country.

We set a goal to be honest, loving, considerate, and accepting of each other. I am not saying that living with LBD is easy, but with the choice to use a great amount of love, with an even greater amount of humor, we made the most of our days.

Reviewing my years of notes allowed me to see both the successes and the mistakes that my husband and I made. Our successes were impressive; we turned a tragedy into an adventure that left positive memories. We are not super special people. Deciding to fight for quality of life can happen for anyone. My hope is that this story of our adventure will make the path for others a bit wider and less rugged.

I haven’t read the book yet, so can’t give a proper review. But it is on my radar, and my list of books to read! If you have read it, please leave a comment and let us know what you thought of it!

I wish I had known before I started caregiving….

This is a re-post from caring.com, and an excellent article where caregivers reflect back on what they wish they had known before caring for their aging parents.

By , Caring.com senior editor
June 06, 2014

Looking Back on Caregiving

6 Things I Wish I Knew Before I Cared for My Parents

You’ve heard the expression “hindsight is 20/20,” and when it comes to family caregiving, it absolutely applies. Get any group of midlife adults together and you’ll hear caregiving “war stories” about what they’re facing when it comes to aging parents, and how completely unprepared they feel for what’s ahead.

“We are not prepared for this situation as a culture — there just isn’t enough information out there,” says Chicago-based Mary Kay Buysse, director of the National Association of Senior Move Managers (NASMM), who has had many years of experience in helping older adults make changes to their living situations. “People are blindsided when suddenly there’s a crisis and Mom needs help and they’re completely in the dark as to what’s available and how to find it.”

To help you navigate this process with more insight, we’ve put together tips from experts and fellow caregivers on what they know now that they wish they’d known when they started the process of finding a safer situation for Mom and Dad. Having been there, done that, they have a wealth of wisdom to pass along to help you learn from their mistakes.

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Take Advantage of the Summer Weather

How Older Adults and Caregivers Can Take Advantage of the Summer Weather

This is a re-post from our friends at agingcare.com, offering ideas for getting outside and enjoying the summer weather together!

Enjoying a breezy spring day or the warm summer temperatures don’t have to be a distant memory for elders and caregivers. After being cooped up in the house for possibly months at a time, senior adults can breathe in the fresh air, even if they are experiencing mobility problems. It takes some advance planning and choosing an activity that won’t seem like a chore, but it’s worth getting out of the house, for you and your elderly parent.

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Caregiving at a Cookout

Caregiving at a Cookout:  Tips for a Good Time

This is a re-post from agingcare.com, a great website with plenty of ideas and resources for caregivers.

Almost everyone looks forward to gathering with family and friends for a backyard barbecue. But if you’ve been dreading going to one because of your responsibilities as a caregiver, never fear: Both you and your elderly loved one can have a fine time, if you plan ahead.

But first, make sure that your relative is in good enough health to attend a party where there will be heat, bugs, noise, smoke from the grill and possibly rambunctious children. Also, check with your hosts to ensure that they understand and can accommodate your loved one’s limitations. If not, find another caregiver to look after your relative while you attend alone; it’s important for you to socialize and recharge.

However, if your hosts are amenable and your loved one is up to it, don’t leave him or her behind. Joan Wright, a certified geriatric manager at NVNA and Hospice in Norwell, Mass., told AgingCare that you should remember that every elderly person was once young, mobile and eager to socialize. “Those desires are still there even if their physical capacity to fulfill them is not.”

Here are some tips from Ms. Wright and others to ensure that everyone has a good time:

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Garden and Grow Together

Gardening and Growing Together

This is a re-post from agingcare.com, and I hope it inspires you to get your hands a little dirtier 🙂

To grow a more meaningful and healthy connection with an elderly loved one, put on some rubber clogs and head out together to the garden.

At any age, gardening is one of the best activities we can do outdoors, several experts told AgingCare.com. It stimulates all of the senses; awakens our connection with nature and with each other; and rewards us with fresh flowers and juicy tomatoes. “It’s restorative, even if you have dementia,” says Dee McGuire, a horticultural therapist at Levindale Hebrew Geriatric Center and Hospital in Baltimore.

Gardening is also an excellent way for aging bodies to get a moderate-intensity aerobic workout, shed calories and stay flexible, according to a Kansas State University study. That’s one reason why gardening remains popular with Americans well into their golden years. Indeed, about three-quarters of households age 55 or older participated in some form of lawn and garden activity in 2010, according to the National Gardening Association (NGA).

Still, there’s no question that bending, lifting, kneeling, squatting, weeding and pruning—not to mention dealing with sun, heat and bugs– all become more challenging as we grow older.

But there are ways to cope.

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Technology and activities for people with dementia

Using ICT in activities for people with dementia

A short guide for social care providers

The Social Care Institute for Excellence has made a great page to introduce technology-supported activities for someone with dementia. It covers a wide range of topics, like how technologies can be used or help, how to start, ideas for activities, examples, and more resources if you want to find out more. I have been following their organization for a few years, since I started my PhD on technologies to support dementia care in 2009, and I recommend them as a resource if you want to learn more about bettering the lives and care of aging adults.

If you check it out, I would really like to hear your opinions and experiences! You can find the page here.

This is a short introduction to using information and communication technology (ICT) in activities for people with dementia. It is aimed at managers and staff in the care sector, and those who organise activities for people with dementia. It’s a plain language guide about using mainstream technologies – you don’t need to be technically minded. We hope it will be useful for you whether you are new to this topic or already have some experience of using ICTs in dementia support.

From the Director of Dementia Adventure

I came across this blog post on the Whose Shoes? blog (a suggested read on personalization in health and social care, by the way). Neil Mapes is the director of Dementia Adventure, which is pretty close to one of my ideas for normalizing dementia in tourism and creating safe places for people with dementia to go with their families on vacations. It’s a good interview with him and about the importance of his company, Dementia Adventure. By the way, Neil, if you are looking for a new colleague, feel free to contact me…… 😉

In the shoes of … Neil Mapes | Director | Dementia Adventure CIC

Happy New Year everybody. #DementiaChallengers are on a roll for 2013, determined to speed up the pace of positive change for people living with dementia and their carers and improve quality of life. And what a refreshing start to the New Year we have here…!

This guest blog is from Neil Mapes, Director of the innovative and award-winning ‘Dementia Adventure’. I am delighted to be able to include this contribution to our ‘in my shoes’ series, looking at dementia from different perspectives. I am a big fan of Neil’s “can do” attitude – it takes a pretty special person to plan sailing holidays for people with dementia in our risk-averse, increasingly litigious ‘elf n’ safety’ society.

We have had over 70 guest posts so far. I have written a couple myself talking about the important role of nature  and specifically the  ‘Let nature feed your senses ‘ project. Neil’s team is making outdoor experiences a reality for more and more people.  I personally feel you do not need mountains of research to know that getting outdoors is GOOD FOR US!

Dementia Adventure is a breath of fresh air for people living with dementia in all senses (literally) – touching, smelling, feeling, tasting and not least hearing the good things that nature has to offer. Most of us take these things for granted – I’d argue that being able to continue going outdoors in later life should be seen as a ‘human right’! 

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