Category: Saying Goodbye

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Crowdfunding Funeral Costs for a Loved One

Friends and relatives now join online campaigns to cover expenses

Funeral Costs

By Jodi Helmer

When someone dies, it’s common to send flowers or make a charitable donation in his or her honor. But a growing number of mourners are turning tocrowdfunding sites specially designed to help cover the deceased’s funeral expenses.

“Most people don’t plan their funerals in advance and that leaves their loved ones figuring out how to cover the costs,” explains Michael Blasco, spokesperson for YouCaring, a two-year-old crowdfunding platform for medical and memorial fundraising.

Funerals Often Exceed $7,000

With the average funeral now topping $7,045, according to the National Funeral Directors Association, families often find that saying goodbye to their loved ones comes with a higher price tag than they anticipated. Enter crowdfunding.

Once the provenance of entrepreneurs and artists (think Kickstarter and Indiegogo), crowdfunding lately has gained traction as a means for fundraising for a range of causes, including funeral expenses. Organizers post their campaigns online and seek funding from backers to meet their goals. The average campaign lasts between 30 and 60 days and the money raised is transferred to organizers via PayPal or WePay accounts.

Funeral campaigns can be set up through traditional crowdfunding sites such asYouCaring, Indiegogo, GoFundMe and GiveForward. But in the past two years, niche sites, such as Funeral Fund and Graceful Goodbye have also sprung up.

Raising $10,000 in a Funeral Crowdfunding Campaign

GoFundMe is currently hosting more than 8,000 funeral campaigns. On Indiegogo, over 50 funeral campaigns reached their fundraising goal, including a handful that raised upwards of $10,000 apiece. Funeral fundraising is the fastest-growing category on GiveForward, growing an average of seven percent per month.

“A lot of campaigns start out as medical fundraisers and then transition into funeral and memorial fundraisers [when the person dies],” explains Ariana Vargas, director of business development for GiveForward.

Joshua Starnes created a campaign on Funeral Fund after his friend, fellow film critic Eric Harrison, died of a brain aneurysm at 57 in 2012. Harrison, who was single and childless, didn’t have life insurance and there were no proceeds from his estate to cover funeral expenses. His young nieces were left to come up with the funds for his burial.

“Putting together even a modest funeral would have been impossible for them and [his colleagues] didn’t have enough cash in our group bank account to cover the cost,” says Starnes.

Crowdfunding, Starnes decided, was the best option. Thanks to the generosity of 108 backers, he collected $6,520 during the 30-day campaign — enough to cover the cost of the funeral.

A Kind and Innovative Technique

Crowdfunding consultant Rose Spinelli isn’t surprised that mourners are using this innovative technique to subsidize funeral expenses.

“In the most basic terms, crowdfunding is a community-building mechanism that brings people together around a cause,” says Spinelli, founder of The CrowdFundamentals site. “It can be a wonderful, warm feeling to know that people care and are sharing in the grief.”

But shared grief might not be enough to turn mourners into donors and crowdfunding efforts for older adults can be especially challenging. Many people in their 60s, 70s and 80s believe their cohorts should be prepared for their passing, with savings or prepaid funeral arrangements.

“People are willing to come forward with support when something unexpected happens,” Spinelli says. “When an older person dies, it doesn’t trigger the same reaction.”

Some Donors Get Thank-You Gifts

To boost response rates and honor backers who help with funeral costs, some crowdfunding organizers offer small tokens of appreciation. One Indiegogo campaign offered a handmade remembrance bracelet in exchange for a $25 contribution; another promised backers who pledged $50 that they’d receive a hug.

Blasco encourages posting photographs and favorite anecdotes about the deceased on the campaign page to increase the odds of crowdfunding success. “People respond to stories,” explains Blasco.

But even the most compelling stories are not apt to attract the attention of generous strangers, however. Instead, most contributions will come from relatives and friends.

For example, most who contributed to Starnes’ crowdfunding campaign for Harrison were relatives, former colleagues and patrons of the arts who appreciated the critic’s work. “The funds came from people he had an effect on in his life,” says Starnes.

What a Crowdfunding Campaign Costs

A crowdfunding campaign can also turn into an online memorial, a place for loved ones to share special memories and connect with others in a shared grief.

“The original intent and purpose [of a funeral crowdfunding campaign] is to raise money but, in a dark time, it’s also a place to celebrate a loved one’s life,” says Vargas. “It brings people together from all over the country who can’t make it to the funeral but want to say goodbye.”

In a time of grief, some mourners might not read the fine print in a crowdfunding campaign for a funeral. Fees vary, but crowdfunding sites typically keep three to 10 percent of the money raised.

And if you plan to launch a crowdfunding effort for a funeral or will donate to one, be sure you’re aware of the tax rules.

Quin Christian, an accountant with CrowdfundCPA, says crowdfunding contributions to help cover funeral expenses are likely to be considered gifts and shouldn’t be taxable to organizers.

Be careful, though. Christian warns that a gold-plated coffin, towering tombstone or designer burial suit — or even hosting multiple funeral-related crowdfunding campaigns in a short period of time — could raise IRS red flags.

Donors can’t write off what they give to a crowdfunding campaign as charitable contributions unless the beneficiary is a nonprofit.

But the benefit of using crowdfunding to cover funeral costs usually has nothing to do with the bottom line. “I’m glad we were able to help make sure he [Eric Harrison] had a proper burial,” says Starnes.

Complete Article HERE!

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The Biggest Mistake Pet Owners Make at the End

City dog
City dog

By 

If I had a big huge red pen and could permanently strike five words from the Standard Veterinary Dialogue, it would be this: “You’ll know when it’s time.”

Waiting for The Look

Wouldn’t that be great, if pets had a little button that popped up like a Butterball turkey when they were ready to be euthanized? It would eliminate a lot of agonizing on the part of loving pet owners who are struggling with one of the most significant decisions they will have to make in a pet’s life. But that’s rarely how it actually works.

Perhaps you’ve heard people talk about “The Look,” the appearance a pet has when he or she is ready to depart this Earth. “You’ll know it when you see it,” they say, and they are right. It’s hard to describe, that sort of intuitive emotional bond that develops between owner and pet when they are signaling that they are done. I’ve seen it and I agree, it’s hard to miss. It provides a great deal of reassurance to pet owners to know that their pet seems in agreement that it’s time for the next adventure.

The only problem is, this doesn’t always happen.

Pets have other ways of communicating with us beside a meaningful gaze that speaks to our soul; namely, their behavior. Veterinarians experienced in end-of-life care work with very specific quality of life assessments that can give more subjective endpoints than simply “a look,” which can be key when an owner is waiting for a sign that may not come and ignoring all the other cues that a pet is communicating.

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The Quality of Life Assessment

Appetite, mobility, hydration, pain, interest in their surroundings, and hygiene are all very specific categories we can assess to determine a pet’s quality of life. Think of it less as a “yes/no” switch that gets flipped and more like a spectrum as a pet approaches death. There’s a large grey zone towards the end where owners could make a good argument for or against it being “time”, and that is the agony and the burden we face as pet owners.

I like the quality of life assessment that uses multiple variables to assess a pet’s condition because all too often, people focus on one specific thing. “Radar hasn’t gotten up for a week,” an owner will say. “He cries all night, soils himself, and pants constantly, but he ate a piece of hot dog yesterday and wagged his tail once, so I don’t think it’s time yet.” In these cases, I counsel owners that we don’t need to wait until every moment of a pet’s waking hours are miserable before making the decision to euthanize.

It’s ok to go out on a bit of a high note. It is one of the blessings of euthanasia, that we can say goodbye in a controlled, peaceful environment and eliminate the pain and stress of a crisis moment at the end.

Death used to be as mysterious for me as it is for most people, but after years working with pets Death and I have become, if not friends, at least very collegial. With that under my belt, the only thing I can tell you with certainty is this: The only way you’ll know that it’s time, truly and without doubt, is when the pet actually stops breathing. Everything else is open to interpretation.

Rarely do people tell me after the fact that they let a pet go too soon. If anything, most feel they waited too long. We have a saying in our field that I repeat on a daily basis to my clients:”It’s better to be a week too early than a minute too late.”

Complete Article HERE!

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I loved my son so much I planned his peaceful death, says brave mum of brain tumour boy

BY , SACHA LANGTON-GILKS

David Langton-Gilks died from a brain tumour in August 2012 at the age of 16 but before his death his mum Sacha planned a peaceful passing for him at home surrounded by his family

Loving: Sacha and David

Death. It’s the final taboo, isn’t it? Especially when it’s a child. We can’t – or won’t talk – about it.

Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity’s HeadSmart campaign for earlier diagnosis of brain tumours in children and young people shatters that taboo.

To help other parents, she talks about how her son David, who died from a brain tumour in August 2012 at the age of 16, had a peaceful death at home surrounded by his family.

She emphasises that, just like we make birth plans, we should make death plans and how being able to die peacefully at home was her last act of love for her cherished son.

David Langton-Gilks before his death
Family: David Langton-Gilks before his death with his mum Sacha

Here Sacha tells her story:

Days before he died, the last lucid words my 16-year-old son David, or DD as we like to call him, said were: ‘I love it here.’ He was looking out his bedroom window into the treetops where, at night, owls – one of his passions – would come to call.

It was just a few days before London 2012 Paralympics and for five years, since being diagnosed with an aggressive, cancerous brain tumour at the age of 11, DD had endured everything globally available on the NHS, including 11 brain operations, years of chemotherapy, weeks of radiotherapy, blood transfusions and a stem cell transplant.

His cancer had now spread down his spine and throughout his brain, leaving him with severe dementia. Unfortunately someone’s child has to be in the 25 percent that don’t survive this type of brain tumour, a medulloblastoma .

David Langton-Gilks before his death
Smile: David Langton-Gilks before his death which left his family devastated

Three years on, I can honestly say that giving my child a ‘good’ death – without pain, calm and comfortable in his own bed, in the arms of his family with his beloved cat sitting on the bed, will be my greatest life achievement. And it gives me immense comfort in my grief.

I am speaking out to break a taboo because I remember the silence that hung over parents in the children’s cancer ward when a family ‘went home.’

 

We all knew that meant the child was going to die but no one could say it.

Fear overwhelmed us. If you cannot even say the word, how are you going to be able to discuss what choices best suit your family for end of life care?

Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity's HeadSmart campaign
Mum: Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity’s HeadSmart campaign

With brain tumours being the biggest cancer killer in the UK of children and adults under 40, The Brain Tumour Charity’s feedback from many parents is that they feel completely isolated with no information.

Even doctors do not say the D word because they have been trained to ‘fix’ things and view death as somehow a failure on their part.

But I see my doctors and nurses as geniuses for enabling a fabulous quality of life for my child right up to his death. This taboo about death has to be shattered so that we can improve how we care for our loved ones at the end of their lives.

When I was asked to give a speech to parents and doctors at The Brain Tumour Charity’s first paediatric brain tumour information day about how we managed DD’s death, the process itself, I didn’t know if I could do It. But then I remembered that voiceless fear in parents’ eyes at the hospital.

I call this an ‘ante-mortem class’ – one parent sharing their experience with another parent just as you would at an ante-natal class.

After all, you wouldn’t dream of giving birth without talking to another mum, reading books or going to a class, would you?

Lack of information about end of life care for children breeds fear and stops parents from even being able to articulate questions to their doctors.

David Langton-Gilks before his death with his family
Tough: David before his death with his family

On top of this is our society’s obsession with being ‘positive’ with hope. The fear that somehow by saying the D word means we ourselves might have made it happen by not being positive enough, by giving up hope. It is our punishment for being cowards.

But death is part of life and comes to us all. So how can it be negative or positive? It just is what it is – ceasing to be.

When we ‘went home’ after DD’s final scan in May 2012, which showed his cancer was everywhere and he had weeks to live, we were not doing nothing or stopping treatment – there was a detailed advanced care plan in place.

He was having full palliative care treatment co-ordinated by Southampton General Hospital which included Gold Standards Framework for end of life care at our GP’s surgery and also involved Marie Curie.

It centred on the relief of his symptoms of pain and vomiting to give him quality of life.

It just was not curative treatment as this was no longer possible.

David Langton-Gilks before his death
Tragic: David Langton-Gilks before his death

But we still had hope – we had changed that hope from one that DD could be cured to one where he had the best quality of life possible in the limited time he had left.

Some people do a bucket list, but DD just wanted to hang out at home with me and his dad Toby, his brother Rufus, now 17, and sister Holly, now 13.

He didn’t want to spend another second in hospital and wanted to have a party with his friends. So we did.

If we had not faced up to the fact that he was going to die soon, we would have spent hours of that incredibly precious time in hospital trying to convince ourselves that the chemotherapy on offer would cure him.

DD would have hated it and we’d have been traumatised by each successive scan, contradicting what we longed to see.

My biggest agony was knowing that helping my child to suffer less meant I might have less time with him.

Nothing will ever be as painful as letting DD go, but how could I have made him suffer pain on my account? That would have made me the most selfish mother alive and I couldn’t have lived with that.

So the biggest battle was actually me.

In Childhood Cancer Awareness Month, from one parent to others going through the same thing, as a gift from my heart, I am sharing how my son died to shatter the taboo and make your battle less.

 
Complete Article HERE!

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Cultural Aspects of Death and Dying

by

While the end of life experience is universal, the behaviors associated with expressing grief are very much culturally bound. Death and grief being normal life events, all cultures have developed ways to cope with death in a respectful manner, and interfering with these practices can disrupt people’s ability to cope during the grieving process. While health care providers cannot be expected to know the mourning ceremonies and traditions of each family’s culture, understanding some basics about how different cultures may prepare for and respond to death is important. Though difficult to ask, there are crucial questions that need to be part of conversations between doctors and nurses and families. For example:

pic_3119What are the cultural rituals for coping with dying, the deceased person’s body, the final arrangements for the body and honoring the death?

What are the family’s beliefs about what happens after death?

  • What does the family consider to be the roles of each family member in handling the death?
  • Who should the doctor talk to about test results or diagnosis?
  • Are certain types of death less acceptable (for example, suicide) or are certain types of death especially hard to handle for that culture (for example, the death of a child – this example may seem too obvious, but in countries with high infant mortality, there are indeed different attitudes about the loss of children.)3

This list of questions is so important because patients and families should be viewed as a source of knowledge about their special/cultural needs and norms – but health care professionals sometimes are at a loss about what to ask under such trying circumstances. There is perhaps no area where reliance on cultural reference books is less useful. The degree of acculturation is absolutely paramount in determining the beliefs and traditions a family will follow when coping with impending death, post-death arrangements and mourning. While we can find many similarities across cultures, such as wearing black as a sign of mourning, there are always exceptions. In China, for example, white is the color of death and mourning. Part of why the degree of acculturation is highly significant is that blending belief systems becomes more pronounced in highly acculturated persons. There are places in the world where accommodation is made for multiple faiths. For example, in Nigeria there is a triple heritage of Christianity, Islam, and ancestor worship2. Similar blending can be found in Caribbean nations and Mexico where Catholicism can be mixed with indigenous folk beliefs like Voodoo and Curanderismo. Another layer of expectation comes with living in the United States culture and relying on the Western medical culture. The mix of cultural/religious attitudes and behaviors surrounding death and dying can become very complex indeed. And when a death actually occurs, some individuals suddenly choose to break with tradition entirely, often creating chaos within families.

Burial ceremony of late Hassan Fanstastic at Baqdaad Village, outskirts of Mogadishu. Hassan was the Director of local Radio and Television – Shabelle. He became the Shabelle Director killed since 2007. He was Murdered on Saturday 28 January, 2012 near his home in Wadajir district.
Burial ceremony of late Hassan Fanstastic at Baqdaad Village, outskirts of Mogadishu. Hassan was the Director of local Radio and Television – Shabelle. He became the Shabelle Director killed since 2007. He was Murdered on Saturday 28 January, 2012 near his home in Wadajir district.

What follows in this article are some important points of consideration, but the list is introductory in nature at best. There is a strong focus on religions because religion can be thought of as a cultural system of meaning that helps to solve problems of uncertainty, powerlessness, and scarcity that death creates. In placing death within a religious perspective, bereaved persons find meaning for an event that for many is inexplicable.1 (Each underlined heading is a link to further resources for readers.)

Monotheistic Religions: Especially since the events of 911 changed many people’s views of Muslims, it is important to be aware that Christians and Muslims both believe death is a transition to a more glorious place and both believe in the sovereignty of a God (Allah) in matters of loss and take consolation in phrases such as “Allah giveth and Allah taketh away.” Both are also faiths springing from a single scripture, founder or sacred place. Readings from the Koran or Bible are important parts of the recognizing the departure of a loved one from this life. Similarly, in the Jewish faith, there is the expression mourners recite a few minutes before a funeral begins: “The Lord has given and the Lord has taken, blessed be the name of the Lord.” Both Muslims and Christians believe in the afterlife and view worldly life much in terms of preparing for eternal life. In the Jewish tradition, the focus is on the purpose of earthly life, which is to fulfill one’s duties to god and one’s fellow man. Succeeding at this brings reward, failing at it brings punishment.

The traditions around death and dying differ greatly across all three major monotheistic religious systems (as well as within different branches of each faith, i.e. Jehovah’s Witnesses and Mormonism in Christianity). They are highly nuanced and very hard for outsiders to understand thoroughly. Key rituals and practices that differ widely between religions include the preparation of the deceased person’s body, the permissibility of organ donation, and the choosing of cremation vs. burial.

Ancestor Worship: The premise of ancestor worship is based on understanding that the course of life is cyclical not linear. 7411588_origThose who are dead may not be seen physically, but are alive in a different world and/or can reincarnate in new births. Ancestor worship in various forms can be found in many parts of the world and is very strong in parts of Africa and Asia. Many Native Americans and Buddhists alike believe that the living co-exist with the dead. A central theme in all ancestor worship is that the lives of the dead may have supernatural powers over those in the living world – the ability to bless, curse, give or take life. In some cultures, worship of the dead is important, and includes making offerings of food, money, clothing, and blessings. In China there is the annual observance of “sweeping the graves” and as its name denotes, it is a time for people to tend the graves of the departed ones. In Mexico, there is The Day of the Dead (Dia de los Muertos), a holiday that focuses on gatherings of family and friends to pray for and remember those who have died. The Day of the Dead is also celebrated by many Latin Americans living in the U.S. and Canada. The intent of the celebration is to encourage visits by the souls of the departed so that those souls will hear the prayers and the comments of the living directed at them. It makes sense that in cultures where ancestor worship is common, the acceptance of organ donation and cremation may be low.

arisada_houin
budhist monk mummy

Buddhism and Hinduism: Hinduism does not have roots springing from a single scripture, founder or sacred place. It is more like an umbrella term describing a set of philosophies and ways of life. Buddhism has a single founder, but the Buddha is not prayed to in the same sense as a God or Allah. Buddhism is also a set of philosophies for living. There are marked differences between the two, or course, but in both death is not seen as the end of life; it is merely the end of the body we inhabit in this life. The spirit remains and will seek attachment to a new body and a new “life” – in Buddhism it is called a “kulpa,” which is a unit of time. Where a given person will be born again is a result of the past and the accumulation of positive and negative action, and the result of karma. Followers of both traditions keep in mind the impermanence of life. The transition of a soul to a new life is very important so both traditions observe specific rituals at the time of dying and the handling of the body. The corpse of a Buddhist should not be touched for 3-8 hours after breathing ceases as the spirit lingers on for some time. Hindus believe the body of the dead must be bathed, massaged in oils, dressed in new clothes, and then cremated before the next sunrise. It follows that cremation would be acceptable in a faith where the soul will be released to find another body to inhabit.

Truth-telling to Patients: In collectivist cultures, the good of the individual is often so enmeshed with the good of the family Death-03or in-group that family members may have a greater say in health care decisions than the patient does in some circumstances. In many countries, family members may become very upset if a physician reveals bad news directly to the patient. Families and patients may place great value on the right NOT to know! This is completely at odds with the standards set forth in the Patient Self Determination Act http://en.wikipedia.org/wiki/Patient_Self-Determination_Act which secures certain rights legally for all patients in the U.S. The health care system needs to be flexible enough to accommodate communication patterns that look different from those within the informed-consent tradition which insists doctors and nurses tell patients everything. So, a key question in cross-cultural health care situations would be: Who do you want me to talk to about test results or diagnosis?

chineseExpressions of Grief: In some cultures, showing grief, including wailing, is expected of mourners because the more torment displayed and the more people crying, the more the person was loved. In other cultures, restraint is expected. Rules in Egypt and Bali, both Islamic countries, are opposite; in Bali women may be strongly discouraged from crying, while in Egypt women are considered abnormal if they don’t nearly incapacitate themselves with demonstrative weeping. In Japan, it is extremely important not to show one’s grief for a number of reasons. Death should be seen as a time of liberation and not sorrow, and one should bear up under misfortune with strength and acceptance. One never does anything to make someone else uncomfortable. In Latino cultures, it may be appropriate for women to wail, but men are not expected to show overt emotion due to “machismo.” In China, hiring professional wailers may be customary in funerals, which may sound odd, but this was also a common practice in Victorian England.

Conclusion: For health care professionals, providing culturally sensitive bereavement/end of life care is understandably an MRELMASTW9Fissue of discomfort. Language and cultural barriers obviously compound the challenges of being professionally appropriate and compassionate. Patients and families may be in need of compassion, advice, and guidance from doctors and nurses, but often the realities of a given situation include a press for time and both physical and emotional exhaustion among providers and families. It happens – sometimes we simply fail, in the moment, to express sufficient sensitivity and warmth when critical decisions must be made. The clinical facts are immediate and demand logical linear thinking which is natural for those trained in the Western medical tradition. For many cultures, such a direct approach may seem harsh, and decisions about something like organ donation might be experienced as inhumane immediately upon death. The questions suggested in this article can be used to ease some of the communication challenges and facilitate more openness between health care professionals and families around death and dying. Of course they should be tailored to the context of a given situation.

Complete Article HERE!

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As Alzheimer’s Symptoms Worsen, Hard Conversations About How To Die

By Rebecca Hersher

Six years after he was diagnosed with early onset Alzheimer's disease, Greg O'Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.
Six years after he was diagnosed with early onset Alzheimer’s disease, Greg O’Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.

In this installment of NPR’s series Inside Alzheimer’s, we hear from Greg O’Brien about his decision to forgo treatment for another life-threatening illness. A longtime journalist in Cape Cod, Mass., O’Brien was diagnosed with early onset Alzheimer’s disease in 2009.

These days, Greg O’Brien is thinking differently about the future. It’s been six years since his Alzheimer’s diagnosis, and he’s shared with NPR listeners a lot about his fight to maintain what’s left of his memory. He’s shared his struggles with losing independence, and with helping his close-knit family deal with his illness.

What O’Brien hasn’t wanted to talk about until now is the diagnosis he got two weeks before he and his family learned he had Alzheimer’s disease: O’Brien also has stage 3 prostate cancer. Now, as his Alzheimer’s symptoms worsen, the cancer is increasingly on his mind.

“I just don’t know how much longer I can keep putting up this fight,” he says.

This summer, Greg and his wife, Mary Catherine O’Brien, have started talking about how he wants to spend the final years of his life — and what Greg calls his “exit strategy.”

He hopes the cancer will kill him before the Alzheimer’s disease completely robs him of his identity.

Recently Greg sat down with his close friend and primary care physician, Dr. Barry Conant, and with Mary Catherine, to talk about that decision and about Greg’s prognosis.

Interview Highlights

Dr. Barry Conant on the ethics of not treating Greg’s prostate cancer

I think honestly, in a perverse kind of a way, it gives you solace.

Maybe it will shorten the period in your life which you find right now to be something you want to avoid, and so far you’re only talking about neglect of a potentially terminal condition.

If you decided to be more proactive, that’s where the discussion becomes more interesting. Some people would say I’m violating 001my Hippocratic oath by discussing that, but I think — I don’t feel uncomfortable having that discussion. And, while you still have the ability to reason, it wouldn’t be a bad discussion to have with your family.

Conant — who, like O’Brien, has cancer — consoles Greg that his family will be OK

Nobody is indispensable — nobody. And if you or I were to immediately vanish from the Earth, our families would do fine. They have family support. They have friends’ support. They’re in a nice community. It’s a terrible sense of loss that they’ll have, but they will do fine. And if they’re honest with themselves, they’d realize that they’re going to do fine.

Greg and Mary Catherine discuss Greg’s prognosis

Mary Catherine: Going through Alzheimer’s, it’s not the plan.

Greg: Where do we go from here?

Mary Catherine: That I don’t know. …

Greg: It’s getting so frustrating for me. I mean I care, obviously, deeply about you and the kids. I could see 3 or 4 more years of this, but I can’t keep the fight up at this level. We talked about that the other night. How did you feel about that?

Mary Catherine: Wow … (chokes up). I don’t want to talk about it.

Greg: Can you see it coming?

Mary Catherine: Yeah, I can. Fast.

Greg: Are you OK with me not treating the prostate cancer?

Mary Catherine: Only because you’re OK with it. You need that exit strategy, and the exit strategy with Alzheimer’s is horrible. Well, they’re both horrible.

Greg: You know I’ve been there with my grandfather and mother, and don’t want to take my family and friends to that place.

Mary Catherine: Right. I know. I understand.

Greg: Do you still love me, dear?

Mary Catherine: Yes, I do, dear.

Greg: I love you, too.

Complete Article HERE!

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Caring for someone who is terminally ill

The following information is primarily for our friends in the UK.  However, it’s a great checklist for the rest of us too.

 

It’s important to understand the financial, practical and emotional support available to you and the person you care for. Information on the support that may be available to you or the person you care for is provided below.

sick child

Financial support

You or the person you care for may be entitled to some financial support. Some information on this is provided below.

Benefits for the person you care for

The person you care for may be entitled to:

  • Disability Living Allowance, if they are under 65 and need help with personal care and/or getting around
  • Attendance Allowance, if they are 65 or over and need help with personal care
  • Employment and Support Allowance, if they are under state pension age and have an illness or disability which affects their ability to work

There are special rules to help terminally ill people get Disability Living Allowance, Attendance Allowance or Employment and Support Allowance quickly and easily.

Carer’s Allowance

As a carer, you may be entitled to receive Carer’s Allowance. You can keep getting this for up to 12 weeks if the person you care for goes into hospital and for up to 4 weeks if they go into a care home (provided certain conditions are met). If the person you care for dies, Carer’s Allowance will usually stop after eight weeks.

Practical support

There’s lots of support available from different organisations for carers. It’s important that you have enough practical and emotional support in your caring role.

Support from social services

The social services department of your local Trust may provide a range of social care services and equipment for terminally ill people.

Assessments from your local Trust

An assessment with social services is the first step towards getting help and support for yourself and the person you care for. The person you care for is entitled to a health and social care assessment, while you, as a carer, are entitled to a carer’s assessment.

Emotional support

Although friends and family can provide emotional support at this difficult time, you may find it easier to talk to a professional counsellor or to other carers in a similar position. The person you’re caring for and other family members may also benefit from counseling.

Support groups for carers

There may be support groups for carers in your local area. This could give you the opportunity to talk to other people in the same situation as yourself.

Help with caring for someone at home

There are different options to help you care for someone at home.

Medical and nursing care

If the person you care for needs specialist medical or nursing care to enable them to continue living at home, you can arrange this through their local doctor (GP). Services that may be available include:

  • visits from a district or community nurse (for example, to change dressings, give injections or help with bathing or toileting)
  • help with getting the person into and out of bed

Services that are provided by the local Trusts may vary from region to region.

Short-term breaks

Both you and the person you care for may benefit if you can take a short-term break from caring from time to time. This is sometimes known as respite care. You can arrange short-term breaks through your local Trust.

Employing a professional carer

If you’re caring for someone who needs a lot of care, you may choose to employ a professional carer (or carers) to share the caring role with you.

Alternatives to caring for someone at home

Hospice care

Hospices are residential units that provide care specifically for people who are terminally ill, and offer support to those who care for them.

Hospices specialise in palliative care, which aims to make the end of a person’s life as comfortable as possible and to relieve their symptoms when a cure is not possible. Hospices are run by a team of doctors, nurses, social workers, counsellors and trained volunteers. Many hospices offer bereavement counseling.

Hospice staff can sometimes visit people at home and are often on call 24 hours a day. It is also possible for patients to receive daycare at the hospice without moving in, or to stay for a short period to give their carers a break.

There is no charge for hospice care, but the person you care for must be referred to a hospice through their GP, hospital doctor or district nurse.

In Northern Ireland, hospice care is provided by:

Hospital care

There may be times when a terminally ill person needs to go into hospital. If the person you care for is coming home after a hospital stay, your local Trust will work to meet any continuing health and social care needs. The person’s needs should be assessed before they return home and a package of care arranged for them.

Care homes

If the person you care for needs a level of care and support that cannot be provided in their own home, a residential care or nursing home could be the answer. You can find detailed information about care homes in the health and well-being section of nidirect.

Helping the person you care for prepare for death

It’s natural for someone who is terminally ill to want to sort out their affairs and make decisions about what kind of medical treatment they want (or don’t want) at the end of their life. The ‘rights and responsibilities’ section of nidirect contains useful information about wills, living wills and the right to refuse medical treatment and resuscitation.

When the person you care for dies

There are things you may need to consider if you care for a terminally ill person.

What to do after a death

When someone dies, there are some things you will need to do straight away, or within the first few days and weeks.

Bereavement counseling

When someone close to you dies, you may benefit from counseling from a specialist bereavement counsellor. The charity Cruse Bereavement Care can help with this.

Benefits and bereavement

If the person you care for dies, Carers Allowance will usually stop after eight weeks. If your spouse or civil partner has died, you may be able to claim one or more of the following bereavement benefits:

  • bereavement payment; a single tax-free payment for people who are under state pension age when their spouse or civil partner dies
  • widowed parents allowance for people who have dependent children
  • bereavement allowance for those aged 45 and over when their spouse or civil partner dies

Complete Article HERE!

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When Your Loved One’s Last Wish Was ‘No Funeral’

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alternative_memorials

WebOver the past year, I’ve experienced several losses that, at the request of the deceased, did not include funerals. Grief rituals are central to my mourning process, but there’s no negotiating with the dead. In the absence of the most standard of ceremonies, how do you give expression to your grief while respecting someone’s final wish for “no funeral, please?” Through personal experience, and conversations with friends and readers who’ve faced the same scenario, here are seven ways to do just that.

  1. Write and place an obituary in their local paper.

My 93-year-old grandmother died in May, and had insisted she didn’t want a funeral. My grandfather had planned to write the obituary, but amid his grief, the project was understandably pushed aside. Yet the idea of my much-beloved grandmother’s life and death going unrecognized publicly was an uncomfortable one.So I contacted surviving relatives to get the details of Gram’s early life, and placed obituaries in the papers of her East Coast childhood and West Coast adulthood. Plotting her life achievements through words provided a way to process my grief. Seeing her name, picture and story in print granted me a sense that she isn’t forgotten.

  1. Take up one of their skills or hobbies.

Was she a yoga aficionado or competitive knitter? Was he a golfer? Engage in an activity that reminds you of the deceased and try to discover what they loved so much about it.

  1. Assemble an homage to the deceased in your home.

Bring out your memories of him or her — photos, postcards, ticket stubs, keepsakes — and display them with a memorial candle in your home. When the person crosses your mind, light the candle and say a few words. Rinse and repeat as needed.

  1. Post a personal tribute with photos on Facebook and/or your blog.

What would you have said at their funeral? Which story or picture would you have shared with other mourners? Craft your tribute and tell it to Facebook or your blog followers.

  1. Donate to their favorite cause.

I was crushed last September to hear that a former L.A. colleague and brilliant writer had died of cancer. She’d quietly quit her job, told no one that the disease she’d beat years ago had returned, and entered a nursing home. The news that she’d donated her body to science and didn’t want a memorial was a one-two punch. For weeks, I struggled with how to honor this woman who’d been a generous mentor early in my career. Since she was a self-proclaimed “cat lady,” I made a donation in her name to Kitten Rescue Los Angeles. The act didn’t provide the same degree of catharsis as a funeral, but it offered a personalized way to honor her legacy.

  1. Host a dinner or cocktail hour in their honor.

Gather would-be funeral attendees for a meal where signature drinks and dishes loved by the deceased are served. To encourage guests to exchange favorite memories around the table, start off by sharing yours.

  1. Plan a pilgrimage to sites charged with their memory.

After the uncle of one of my friends died suddenly, the family learned that he had not wanted a funeral. In lieu of it, they gathered in his hometown and did a walking tour that included his childhood home, the church where he was confirmed and the lake where he and his surviving sister had ice-skated. Through this expedition, the family was able to respect the uncle’s wishes while sharing the tears and memories that would accompany a formal service.

Complete Article HERE!