How do you honor a dementia patient’s end-of-life-wishes?

By Bob Tedeschi


A terminal illness can be devastating for an entire family, with relatives often forced to make decisions about a loved one’s care if the patient is no longer able to do so.

If the patient has dementia, the situation can be even harder. By the time a neurological disorder is diagnosed, many patients can’t think clearly or articulate their wishes for end-of-life care.

So what to do?

Amid the many imperfect options comes a new and promising one.

The Conversation Project, an organization that publishes a guide called “the Conversation Starter Kit,” to help families through end-of-life conversations, recently released a sequel for families of Alzheimer’s and dementia patients. Co-produced by the Institute for Healthcare Improvement, it was co-written by Ellen Goodman, a Pulitzer-winning journalist who founded the Conversation Project and who lost her sister to Alzheimer’s disease roughly four years ago.

“The day she was told by a doctor that she had Alzheimer’s, we got back in the car. She talked about it for a moment and I had this great sense of relief that it was finally on the table,” Goodman said. “Then of course the next day she forgot.”

“We were really too late,” she said.

Goodman knew she wasn’t alone. When promoting the importance of end-of-life conversations, she said, “We were repeatedly asked the question: ‘Yeah, but what if your loved one is cognitively impaired?’”

The new guide, which is available in full here, breaks down the conversation into several steps, with recommendations based on a person’s cognitive abilities.

If the person with dementia is still able to process information effectively, the guide suggests leading them through a brief questionnaire known as the “Where I Stand Scales.” On a scale of 1-to-5, for instance, they are asked how much they’d like to know about their condition and treatment, or how much of a say they would like to have in their medical treatment.

If they are in the midstages of the disease, loved ones are encouraged to gather information in small bites, and look for the right opportunities to talk. Dementia patients often have moments when they remember certain events clearly, like the extended illness of a friend, and such topics can offer the chance to ask questions that might uncover a person’s medical preferences.

If a relative can’t participate in the conversation, the guide suggests a family meeting in which participants fill out the questionnaire as the patient would.

“So often, the doctors will have the family in the room, and they’ll all be absolutely positive that their loved one wanted something, and they’ll all have a different idea of what that is,” Goodman said. “It’s critical to say ‘Let’s bring this person in the room: How did they make decisions? When did they say something about someone else with Alzheimer’s?’ Figure out what that person wanted, not what you want.”

For families who may be prone to conflict or messy tangents, the guide serves as a script and a means of building empathy through brief testimonials. One such testimonial reads: “The shame involved is very parallel to mental illness. The more profound or accomplished the people are, the more shame is involved. The behavior can be so off the charts that you want to both protect and hide.”

There’s an all-important recommendation that too many families overlook — namely, to create a written statement of wishes for caregivers, other family members, and EMTs to follow, and circulating the document or placing it somewhere that’s hard to miss. (On the refrigerator door, for instance.)

Joanna Baker, of Brookline, Mass., moved her parents closer to her home several years ago so she could more effectively manage her mother’s Alzheimer’s disease and spend time with them while they were still relatively healthy. The new Conversation Starter Kit came too late to help her form an end-of-life plan with her mother’s direct input, but she said it helped her in other ways.

“With someone in cognitive decline, you really have to go do the detective work — intuition, translating signals,” she said. “It’s already hard enough. We’re all plodding through this with a tremendous underlying stream of grief.”

Looking for signals in a loved one’s suddenly foreign behavior, she said, requires separating oneself from that grief long enough to view such behaviors not as a reminder of something lost but as a token of something valuable.

Baker has seen her mother exhibit new tendencies the more time she has spent in the dementia unit: deep affection for, and whispered conversations with, a realistic-looking stuffed cat named Douglas, and an affinity for brightly colored caps from washing detergent bottles, for instance.

There was also the time she lashed out at a doctor who gave her a flu shot.

“The doctor said ‘She’s telling you she really doesn’t want an intervention,’” Baker said. “That was like gold to me, because she was helping me interpret my mother’s behavior.”

Her mother is happy, and Baker is confident she is helping her mother live her life according to her mother’s wishes, down to the songs that play in her room.

“We’ve had to cull the music selection, because things she might’ve liked at one time would be less understandable,” she said. “‘Somewhere Over the Rainbow’” always works.”

“How do I know this?” she added. “I pay attention. Her toes tap when she hears that music.”

 Complete Article HERE!

When teaching kids about death, be honest

By Vikki Ortiz Healy

While decades ago parents may have been inclined to keep secrets from children and steer away from discussions of death and dying, child psychology and hospice experts believe being honest about how life and death work is a healthier approach.
While decades ago parents may have been inclined to keep secrets from children and steer away from discussions of death and dying, child psychology and hospice experts believe being honest about how life and death work is a healthier approach.

It started off as one of the more grim moments in the final days of my dad’s long struggle with Alzheimer’s disease. A hospice chaplain and a funeral home director sat with me and my mom at her kitchen table. Knowing Dad’s death was imminent, we were choosing prayer memorial cards and planning a memorial service when my 5-year-old daughter took a break from playing with the dog to offer some much-needed levity.

“What are you guys talking about?” Gracie asked, climbing into my lap and surveying the catalogs of coffins, urns and other funeral needs.

“We’re talking about how sick Grandpa is,” I said, distracted.

“You’re talking about him dying,” Gracie corrected, catching everyone’s attention before adding innocently, “Is Grandpa going to get buried or burned up?”

The whole table couldn’t help but smile through tears at her youthful candor.

A few weeks earlier, I had explained to her the difference between being buried and cremated when she noticed a cemetery outside the car window. At the time, she was startled by the idea that people were underground, so I told her that some people choose to get turned into ashes that can be spread in places they loved.

I realized that to Gracie, my cemetery explanation was a piece of a puzzle about life that she was slowly putting together in her own way.

She made us laugh again when she followed up with her next question:

“When you burn up my grandpa, can I have his arm?”

In most other cases, my instinct is to shelter and protect my daughters from the harsh realities of the real world. I cheer on her first wiggly tooth and perpetuate her excitement about the first visit from the Tooth Fairy. I lie in bed with her at night and tell long stories about imaginary parties she throws with all her favorite fictional characters. I go out of my way to never complain about my weight or physical appearance in front of them, because I dread the day they’ll realize that women make a pastime out of being hard on themselves.

Yet for some reason, as my dad’s illness and, ultimately, his death, were upon us, I felt the need to do the opposite: to be real about how life — and death — work.

Thankfully, I’ve found that child psychology and hospice experts agree with this approach.

While decades ago parents may have been inclined to keep secrets from children and steer away from discussions of death and dying, the hospice counselors we worked with set aside time to read Gracie a children’s book that helped her talk about losing a loved one. In the weeks leading up to his death, they invited her to ask any questions she might have about what was happening. They counseled me, too, on how to best answer her questions in an age-appropriate way.

“Allowing children to be a part of the grieving process with the community is actually helpful and healing for kids,” said Sally Miller, chaplain at Advocate Good Samaritan Hospital in Downers Grove. “Naming the loss that they’re probably already aware of, and being there in that open space to comfort it is how they’re going to be able to move through their grief in a safe way.”

Miller said she and her colleagues who counsel patients both in and out of Good Samaritan Hospital encourage families to be direct with children by using the words “death” and “die” instead of “expire,” “pass away” or other euphemisms that could confuse vivid imaginations. They encourage parents to follow children’s lead in offering explanations, being mindful not to have an air of secrecy, but also not to give children details that may be too frightening or too abstract for them to comprehend.

The advantage, Miller said, is that children who are properly guided and supported as they learn about heavy issues will be exposed to age-appropriate exploration of emotions, coping skills and other emotional intelligences that will serve them for years to come.

I agree with this theory. But still I was surprised when, minutes after my dad died, the hospice chaplain asked if I was going to let Gracie come to see her grandpa one last time to say goodbye. The chaplain reasoned that after spending years visiting her sick grandpa weekly, it could be jarring for her to return to the house and see no trace of him. Knowing our family was also not planning a traditional wake and funeral, she argued that it would be quite a leap to ask a 5-year-old to process her grandpa disappearing and landing in heaven.

Though I wasn’t completely sure it was the right choice, we let the girls come join us at my parents’ house a half hour later. They ran in the door excitedly, greeting the rest of the family with hugs and kisses and surveying the surroundings.

I asked the chaplain if I should say something directly to Gracie, but she reminded me to let the child lead. “Just let her get to it,” the chaplain said. “She will.”

And sure enough, minutes later Gracie asked to see Grandpa.

With tears in our eyes, we watched her walk confidently into her grandpa’s room, where she climbed up the railing of his hospital bed and kissed his forehead.

“Bye, Grandpa,” she said. “You’re going to go to heaven. And angels are going to guide you.”

Complete Article HERE!

Advanced care planning addresses end-of-life issues



As summer winds down, it’s time to look again at that to do list, especially an item that most of us have put off for years, doing our Advance Care Plan. Fortunately there’s a way to face that task with others, making it easier.

Our “Kitchen Table Conversations About Advance Care Planning” workshop poses the questions that need to be addressed in a facilitated setting which encourages sharing. With stories, role playing and a panel of health care professionals who help people at the end of life, one participant described the workshop as “most impactful and educational for me.”

Our aim is to prepare participants for the most important part of advance care planning, the conversation with loved ones. As one person said, “My husband and I have differing wishes regarding end of life care, so the exercises were pretty revealing.” It’s easy to see the benefit of understanding those differences before a crisis develops, and before dementia sets in. Another participant who experienced the long journey of dementia with his wife said, “Once mid- to late-stage dementia develops, the individual will no longer be competent to make any decisions. It is essential to clearly identify your decision makers in both health care and financial matters.”

In the workshop we spend time looking at whom you might choose as your advocate or health care power of attorney. What are they expected to do? Who would be best able to ask the tough questions, such as will the person recover and what is the expected quality of life? Your advocate should have a good understanding of what you would say

Medicine has made significant progress in developing tools that lengthen life. Diseases that have been considered terminal can now be managed as chronic illnesses, like diabetes and heart disease. This has resulted in a movement toward shared decision making, with the doctor providing realistic side effects and outcomes, and the patient sharing his or her personal values and goals. Together they decide what treatment is appropriate for the individual.

One tool that we all have become familiar with through medical TV shows is CPR. In a typical TV depiction, the actor/patient survives. In reality, between eight and 18 percent of patients who’ve had CPR actually leave the hospital alive, and many sustain physical trauma like broken ribs. Whether a person survives depends on the age and health of the patient.

In our workshop we introduce people to the POLST, the Provider Orders for Life Sustaining Treatment, a document prepared by your health care provider that says whether you want such a procedure performed on you. Especially anyone who is frail or has a terminal diagnosis should consider having a conversation with their doctor about a POLST. With the POLST form posted on your refrigerator, emergency services will not use CPR or other procedures that you have declined.

Shared medical decision making is taken to another level with a new and growing specialty, pal-liative care. The palliative care specialist can be involved at any stage of life to focus on managing side effects of treatment and improving quality of life. This can be particularly helpful as chronic illnesses become more burdensome. Palliative care, sometimes called comfort care, focuses on dignity and quality of the remaining life, and requires ongoing management and conversation.

Hospice is also an important consideration when planning for life’s end. Hospice uses a team of doctors, nurses, social workers, aides, clergy and trained volunteers to augment the care you receive at home. The focus is on comfort and assuring the highest quality of life for an individual nearing life’s end. Treatments and testing that cause discomfort are suspended. Surprisingly, research is showing that many patients who choose comfort care earlier in their illness actually live longer with a higher quality of life.

You’ll learn more at the workshop, and gain the confidence and skills to begin having those “kitchen table conversations” of your own with loved ones. Imagine the relief and peace of mind you’ll feel to share your wishes! We hope you’ll join us at upcoming workshops this fall – you can get details at or by calling Missoula Aging Services at 728-7682.

Complete Article HERE!

Home Remodeling and Modifications for People with Special Needs

By US Insurance Agents

senior-veteran-in-wheelchairIs it difficult to remain independent and get things done at home because of the lack of modifications in a standard house or apartment? The U.S. government, as well as a multitude of private not-for-profit organizations, is doing its best to make sure that each person with a definable need has a home that accommodates their limitations and requirements. There are resources available for determining what modifications need to be made and what needs to be done to get them completed. In addition to that, funding is available for the disabled, elderly, veterans, low-income, and even for students and others who are just getting started in life.

Federal Laws

If you own your own home, you have the right to make modifications, although it is very likely that a local inspector may have to approve them and make sure that they meet safety standards and that the construction is being done properly.

However, it’s not just home owners who have rights. According to the federal Fair Housing Act and Fair Housing Amendments Act, disabled renters are allowed to make reasonable modifications to make life easier, as long as the property is not left in a way that it cannot be reasonably used by the next tenant. As long as you have a disability that can be confirmed by a doctor, you are protected by the law. The property owner has some protection as well. To avoid people abusing the right to modify a home, a property owner may ask to see a letter from your physician confirming the disability, especially if it is an invisible disability, such as a mental disorder, that may not be easy for a nonprofessional to identify.

Federal Resources

The U.S government has many programs that offer assistance with home modifications. Here are a few of our top picks:

The Process

To begin with modifications, the first thing you will need to do is consider your needs.

Assess your space and your needs. It is easiest to make a checklist that clarifies what you currently need assistance with at home, what are your current safety concerns, and what would make your life easier.

Things to consider:

  • Handrails – Are they already provided in all areas where you may need them, such as along ramps, stairs, in the bathroom, or by the bed?
  • Stairs – Do you need to climb stairs to get into the building or to access areas within the building such as laundry facilities or rooms in your apartment or house?
  • Tripping hazards – Are there rugs or other aspects of flooring that may cause a tripping hazard?
  • Lighting – Is there enough lighting and can motion sensors turn it on or is the switch easily accessible?
  • Non-slip surface – Are there areas in the kitchen, bathroom or elsewhere that may be a slipping hazard?
  • Doors and door handles – Are the handles easily reachable and is the door maneuverable?
  • Safety – Can you see who a visitor is without having to open the door first?
  • Your own unique needs!

To learn more about creating a checklist and assessing your needs, visit The Assistive Technology Advocacy Center (ATAC) of DRNJ’s Home Modification Resource Guide.

You can also visit AARP. They have an excellent page, Make Your Home a Safe Home.

disabled youngsters

The Next Steps

Now, it is time to start the process, but where should you begin? Planning!


This is a good time to bring a contractor in to help create a design for the adaptations. It is important to find someone who is qualified. Ask locally, look into their references, and do not be afraid to reach out to more than one before making a decision. You can also check with theBetter Business Bureau and your local Chamber of Commerce to see if they have any complaints filed against them.

  • If you are looking for ideas to share with your contractor, the Fall Prevention Center for Excellence has a great Video Library.
  • The Federal Trade Commission has a section on Hiring Contractors.


This is where all of the ideas come together. Work with a professional and make sure that all of the details that you need are included in your design. You want your home not just to be adapted to your needs, but also to be a pleasure to live in.

For ideas for how to go about designing a home, you can visit:


Remodeling can be a big step, and not every home needs major alterations. Some can do with just temporary and removable modifications. The process of major modifications may also leave the space unusable during the construction process; however, the long-term results may be more than worth the temporary inconvenience.

To learn more about remodeling, visit:

Other Things to Consider

There is a lot to consider when making changes to the home. Take your time, consider all of the pros and cons, and look into as many resources as you can.

Temporary vs Permanent Changes

Do you plan to stay in the residence, or will you be moving at some point? Investing in major changes to a building that you cannot bring with you may not be suitable if you see yourself changing locations in the future. However, permanent changes may be sturdier and long lasting, which can be beneficial in the present as well as the future.

disabled vets

Tips and Advice

Look into what adaptations are used in other residences. Do not forget to consider the materials, available space, and how you will be using that space. Most importantly, never be afraid to ask questions!

You should also take into consideration your own specific needs.  Will recommended changes make a big difference to you?  Are there other changes that could improve your daily life more than others?

Don’t take the retail prices of items at face value.  There are different ways of paying for updates which means certain updates may be less expensive than the sticker prices you see.

Additional Resources


When making estimates, make sure to include all labor, materials, permits, consultations, and extra expenses such as alternative accommodations while the area is under construction.


When added all together, the costs can seem unattainable, but remember the government programs listed at the beginning of this article, and also look into the following organizations:

Additional Information for College Students

Disabled students are protected under the law. You have the right to reasonable accommodations, and that includes either on-campus or off-campus housing that is adapted to your needs. In addition to a suitable living space, if you have a proven disability the university must also assist in making sure that you can access courses and course materials.

Additional Information for Renters

As a renter, you may feel as if you lack the rights of a homeowner. However, that is not the case when it comes to U.S. law protecting the rights of the disabled. You simply need to know your rights, and know who to reach out to when those rights are not being recognized.

To learn about your rights, you can visit:

Complete Article HERE!

Mission creep doesn’t benefit patients at the end of life

The author’s father, John T. Harrington, with one of his great-grandchildren, Libby M. Myers.
The author’s father, John T. Harrington, with one of his great-grandchildren, Libby M. Myers.

By Samuel Harrington

When my father was 88 and the picture of health for his age, he taught me, an experienced physician, an unexpected lesson.

We were discussing treatment options promoted by his primary-care physician and other doctors for an aortic aneurysm — a ballooned segment of blood vessel at risk for dangerous rupture in his abdomen. He turned to me and asked, “Why would I want to fix something that is going to carry me away the way I want to go?”

My father had the generally accurate impression that if his aneurysm ruptured, he could demand pain medicine, decline emergency surgery and be dead from internal bleeding within a few hours or, at most, a day or two.

With his unexpected question, he directly challenged the assumption that a doctor’s advice is always in a patient’s best interest, particularly regarding a medical problem late in life. This proposition had been my general belief, but after more than two decades as an internist and gastroenterologist, he had prompted me to reconsider it.

Furthermore, Dad was making an important distinction, between care at the end of life (in this case, palliative care for pain) and treatment (aneurysm repair). He was also suggesting a natural exit strategy. Not suicide, to which he had a moral objection, and not physician-assisted suicide, which was not a legal option in his home state of Wisconsin.

Despite his generally decent health, we both thought that he was too old for a major surgical repair, so I suggested he undergo an outpatient procedure to insert a stent to prevent the ballooning artery from worsening — that would at least postpone the threat of rupture. My reasoning was that with the stent, he was likely to enjoy the birth of his first great-grandchild and that without it, he would probably never know her.

My father lived five more years and met 12 great-grandchildren. Three of those years were good ones, but two of them were not.

I have asked myself, “Was it worth it?” I know that he asked himself that, too. His mantra for the last two years of his life was “I have lived too long.”

The 2003 book “Tyranny of Treatment” documented the terrible medical procedures used in 18th-century England: draining blood from swollen legs and testicles, radical mastectomy without anesthesia; bleeding arms to “cure” eye problems.

Painful, futile treatment continues to this day, particularly with elderly patients who often are not informed of the difference between palliative care, designed to minimize pain while trying to preserve quality of life at the end, and aggressive treatment more designed to prolong life at any cost, using such methods as surgery or chemotherapy. Often they are not informed about the benefits of letting some conditions run their course.

Here in America, there is a deeply held belief that advances in medicine will eventually conquer or cure the chronic scourges of cancer, dementia, heart disease, lung disease and diabetes. This notion leads many elderly patients to seek aggressive treatment not only to spare their loved ones grief but because they hope (and expect) to be cured, if only they hold on just a little longer.

This is one reason that every year more than 75,000 people older than 85 die in intensive care units seeking care that proves to be futile, according to a 2004 study, and why more than 65 percent of our senior citizens die in institutions when a significant majority say they would prefer to die at home, according to a 2014 report by the Institute of Medicine.

The impulse to treat often prompts us to forget that many elderly patients have multiple medical problems brought on by chronic organ system weaknesses. Focusing aggressive therapy on one serious diagnosis can complicate another to the point of death, disability or prolonged hospitalization. Beyond that, too many doctors succumb to research from drug and device makers that show incrementally positive results for therapies that mean little to someone at the end of a long life.

As an example, a friend recently told me about her 89-year-old mother’s consultation with an oncologist for a Stage 4 cancer of the pancreas. The doctor launched into a description of some new treatment options.

After listening carefully to what the doctor offered, the patient posed the question, “How long can I expect to live if I decline chemotherapy, and how much longer can I expect to live if I undertake therapy?” When the doctor responded that the answer to both questions was three to six months, she cut short the consultation.

According to the science behind the studies, three months of added life expectancy is considered a statistically significant improvement. But for many people at an advanced age, three months of added “life” in hospitals or nursing homes, possibly suffering side effects, may not be an appealing prospect. My friend’s mother looked at the statistics and saw no practical benefit.

Facing the tyranny of treatment is not usually so dramatic. Not every patient has the option to decline surgery for a threatening aneurysm or chemotherapy for late-stage cancer. Most patients have multiple smaller decisions to make in the mission creep of treatment vs. care. These patients and their families need help thinking about the natural progression of aging and visualizing what they want at the end. Then, if they decline treatment and choose palliative care, they can consider an exit strategy.

One patient I spoke with was living a bed-to-chair existence and suffering urinary incontinence from multiple mini-strokes. She resisted the initial insertion of a bladder catheter as one indignity too far. The thought of an invasion of body, followed by regular catheter exchanges, brought a ripple of sadness to her eyes.

She brightened, however, when I explained that refusing to exchange the catheter would ultimately create a painless urinary-tract infection. If she chose, she could then decline antibiotics, and with the help of palliative medications would be able to die comparatively comfortably of a progressive systemic infection. She now had an exit strategy.

If asked by patients, most doctors are willing to discuss quality of life at the expense of quantity of life. In elder care, that conversation should include a discussion about futile treatments vs. making sure the last days on earth are comfortable. As Sherwin Nuland wrote in “How We Die,” “The real event taking place at the end of our life is our death, not the attempts to prevent it.”

Therefore, discussions with our trusted physicians should evolve from how to die later to how to die better, including with an exit strategy.

In my father’s case, he was clear at the end that he wanted to avoid further interventions designed to prolong life. At age 93, after six months in hospice, medicated for comfort, he died quietly at home.

Complete Article HERE!

Saying goodbye: Inside the world’s first children’s hospice

FOR a parent whose child is facing death, the future looks bleak. But at the world’s first children’s hospice, staff ensure that life is celebrated, as our writer reports.

By Rachel Carlyle

'Death happens, but the living goes on'
‘Death happens, but the living goes on’

At the end of the main corridor in Helen House, the world’s first children’s hospice, lies the Little Room. It’s smaller than the other eight bedrooms, simply furnished, and it’s the place parents dread.That’s because it’s where they come when their child has died: the room is kept cold to preserve the body and give the family time to say their goodbyes and give their last hugs. Of course, there are tears here but also laughter and smiles: the room has been decorated as a fairy castle and a spaceship over the years. One time, on a boiling hot day, a grieving family took a break for a water fight on the grass outside.

“We could hear squeals from the parents and siblings of the child who had died,” recalls Clare Periton, chief executive of the hospice in Oxford. “It’s moments like those that capture what we’re about here. Death happens, but the living goes on, there’s still room for fun, and no one judges you.“Parents who come here with their children are scared by the Little Room, but afterwards say it made all the difference to be able to have time with them to say their goodbyes and come to terms with the fact that their child is cold.”

The normalising of death as part of life is what makes hospices so special

We can’t see the room today because it’s being used, but we visit the Starfish Room, the equivalent in Douglas House, the sister hospice for 16 to 35 year olds next door. The room is at the centre of the seven-bedroom building. There’s a discreet door at the back that leads directly outside via a long corridor.It was designed for coffins to enter and leave by – but no one can ever remember it being used. “The young people tell us they came in through the front door and they will go out of the front,” says Clare. This normalising of death as part of life is what makes hospices so special.On the bed in the Starfish Room is a lovingly hand-stitched quilt featuring a parable that explains the room’s name. A man spends his days rescuing beached starfishes by throwing them back into the sea. “What possible difference are you making?” someone asks. “There are so many stranded starfish.”“It makes a difference to this one,” the man replies, holding up a single starfish.“It’s a philosophy to live by,” says Clare. “You can’t change the world completely but you can make a difference to your bit. This is what we are trying to do here.”

Helen House was the world’s first children’s hospice when it opened in 1982. It was the result of a friendship between a nun, Sister Frances Dominica, and the parents of a terminally ill two year old, Helen Worswick, desperate for respite care. It was built in the grounds of the convent; Douglas House was added in 2004.

'You can’t change the world completely but you can make a difference to your bit'
‘You can’t change the world completely but you can make a difference to your bit’

It should be a subdued place because what could be more upsetting than a child’s death? But there’s a bustling, playful atmosphere. “It’s full of laughter and smiles. Staff aren’t moping about, there’s none of that tilted head earnest sympathy,” laughs Clare, who took over six months ago but has worked at the hospice for 11 years having trained as a nurse.“Children need to play and have fun, no matter what is going on in their lives.”There’s a huge, airy playroom at the heart of the modern building. There’s a teacher on site, a games room, a hot-tub room (where parents can take a well-deserved break), music room, sensory room and two family flats. There are 250 children on the books at any one time: some come here for end-of-life care in the last few weeks, others with life-limiting conditions come for respite care a few times a year to give their parents a break.Staff go to incredible lengths to make children’s last days happy and memorable: one 21 year old with cystic fibrosis was desperate to see the new Paddington film before he died, but the DVD hadn’t yet been released.Someone managed to get hold of a copy, it was couriered up from the company in London and a red carpet duly hired for the full premiere experience. Just yesterday, a six-year-old girl got her dearest wish: a trip round Oxford in a horse and cart.

As well as what Clare calls the “sparkly” experiences, they organise ordinary trips to the pub or to Costa Coffee for very ill or disabled young adults who want a slice of normal life.

'We know more than anyone how your whole life can change in a split second'
‘We know more than anyone how your whole life can change in a split second’

At the moment there are four children in Helen House, plus one in the Little Room, and another three children waiting for end-of-life care, being visited at home by outreach nurses.There are 160 staff, ranging from doctors to cleaners and fundraisers, a teacher, music therapist, aromatherapist, play specialists and an army of volunteers. It costs £5.1 million a year to run both houses; Government funding makes up 12 per cent, but the rest is fundraising: £1 million comes in from 37 charity shops.Fundraising was challenging last year, possibly due in part to the negative publicity surrounding their founder, Sister Frances Dominica, who faced historic sexual-abuse allegations. She was under investigation but the CPS dropped the case. She denies the allegations, but had to resign from her role as a trustee of the hospice last December.All 54 children’s hospices in the UK have a similar struggle for funding: on average they receive only 21 per cent of their costs from local Government and health commissioners; the rest comes from fundraising. Many hoped David Cameron would introduce more central Government support, as his late son Ivan was cared for at Helen House and he has spoken fondly of the care the family received there. But nothing has happened as yet.

Perhaps it’s because as a society we don’t like to talk about children dying – unlike in past generations where child mortality was common.

“My great grandmother had 16 pregnancies,” says Clare. “They were used to child mortality. But now it’s a subject we don’t like to discuss.”

We adults may have lost this matter-of-fact attitude to death, but young children haven’t. “We’ve heard siblings talking in the playroom. One will say, ‘My sister has died,’ and the other will say, ‘Oh, my brother died,’ and they will debate ‘which one is the deadest’ or who died first,” says Clare. Her own daughters, aged eight and 10, recently had a discussion about how you would find a coffin for a tall man. “You could fold him in half,” suggested one.

Staff find that children at the hospice often know they are going to die, even if adults have not told them. Outreach nurse Shirley Jones recalls a boy of five who was nearing the end of life, but his parents were convinced he didn’t know.

One day he said he wanted everyone to go up to his bedroom and give presents to his brother, whose birthday was in a couple of months. They were puzzled but did it. He died later that day. “Whether they have knowledge or whether they are picking up on cues from family – sensing anxiety, we don’t know,” says Shirley.

Children are often accepting of death (rarely do nurses hear gravely ill children ask, “Why me?”), but teens and young adults are often angry, perhaps because they have more comprehension of what they are going to miss.

When it comes to end-of-life, children often know what they want. One seven-year-old boy who knew he was going to die was determined only to allow staff to give him limited help when the time came. He even had his wishes laminated to the equipment next to his bed.

When the time came, they abided by his wishes, even though his parents must have wanted to try anything to prolong his life. “His mum was incredibly gracious. She was so terribly upset but she did not ask us to carry on. I had so much admiration for her,” recalls Clare.

When a child dies, the impact on parents is all-consuming; bereavement teams at the hospice are often in touch with them years afterwards. “When a child dies, parents have lost the future,” says Clare. “We help them find a new normal, because it’s never the same again.”

By rights, her work should be gruelling and sad, but she loves it. “I’ve only had three bad days in 11 years here – and only one of them was to do with a death. Working here makes me treasure time with my own children. It makes me listen to them, hug them and spend as much time as possible with them. We know more than anyone how your whole life can change in a split second.”

Complete Article HERE!

Talking to Children When a Parent Is Dying

By Ersilia M. DeFilippis, M.D.