Brain Tumour Survivor

A site dedicated to leading edge treatment for brain tumours
It is currently Tue Nov 21, 2017 4:01 pm

All times are UTC + 10 hours




Post new topic Reply to topic  [ 15 posts ] 
Author Message
PostPosted: Sat Oct 23, 2010 9:02 am 
Offline
Registered User

Joined: Sat Nov 04, 2006 10:18 pm
Posts: 360
Location: Australia
We've had a number of family members contact this site when their loved one is diagnosed with a brain tumour. It is clearly a very distressing and confusing time for everyone. In particular for those who become carers.

Caring for someone with cancer presents it own hardships and the role and importance of carers should not be underestimated.

The following website from the Cancer Council talks about caring for someone with cancer and this may provide some useful information incl how to obtain some support and assistance at this difficult time incl reference to the Commonwealth (Australia-wide) Carer Resources Centre:

Caring for someone with cancer
http://www.cancerwa.asn.au/patients/caring-for-someone-with-cancer/

Note: The information they provide also refers to support that may be available to carers who are caring for someone with cancer via the Commonwealth Carer Resource Centres who have a “network of 54 Commonwealth Respite and Carelink Centres has around 65 'walk-in' shopfronts throughout Australia. Many shopfronts are conveniently located near, or within, shopping centres.”

You can contact your nearest Commonwealth Respite and Carelink Centre by phoning a national telephone number Freecall™ 1800 052 222*. Anyone can contact a Commonwealth Respite and Carelink Centre and to date Centres have assisted over 500,000 people.


Top
 Profile  
 
 Post subject:
PostPosted: Fri Dec 03, 2010 8:42 am 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
The New Grief: Caring for the Caregivers

The subject of this posting is the silent safety net: all those people who find themselves caring for those with terminal illnesses. It is a safety net that is made up of literally millions of Americans. They bear their responsibilities steadily, quietly and without fanfare. Without them our healthcare system would quickly be overwhelmed. Yet we as a society do little to support them. There is much more we can do, and it wouldn't cost us a dollar.

In its Oct. 25 issue, Time magazine ran a special report on Alzheimer's disease. The bulk of the report focused on the symptoms and course of this insidious and frightening disease, along with some discussion of ongoing research that is aimed at unraveling its causes and developing either a cure or at least a way to arrest it. The piece also included a touching commentary by Patti Davis, daughter of late President Ronald Reagan, on what it was like to lose her father to the disease, and an equally moving comment by an Alzheimer's patient about the need to be gentle and patient with herself. What this article was notably short on, however, was any in-depth discussion of what it is actually like to suffer from this disease, or what it is like to be a caretaker for someone whose cognitive and physical decline can last a decade or more before the progressive brain damage that Alzheimer's causes eventually claims a life.

The combination of advances in medical diagnosis and treatment, along with an expected wave of millions of baby boomers entering old age, means that there will also be millions of Americans who will find themselves playing the role of caregiver. The majority -- though by no means all -- of these will be women. In her report titled "A Woman's Nation Takes on Alzheimer's," Maria Shriver points out that roughly a third of caregivers bear this responsibility around the clock. As much as they may do so willingly and lovingly, this burden is not without its costs. According to the Family Caregiver Alliance, as many as 35 percent of these individuals suffer from significant symptoms of depression. They are also at greater risk than average for physical illnesses such as hypertension, and as many as four in 10 say that their caretaking responsibilities have placed a strain on their marriages. For a vivid visual image not only of how Alzheimer's affects its victims but of how caretaking can affect the caretakers, watch the film "Away from Her," in which Julie Christie plays the patient and Gordon Pinsent plays her husband. Despite the fact that Christie is placed in a nursing home where her day-to-day care is taken over by paid staff, the impact on her husband -- of losing his wife piece by piece -- is clear and powerful.

It may be that as a society we hesitate to face up to the issue of how caretaking affects the caretaker. Perhaps that is why we also resist accepting the reality that most, if not all, of us will find ourselves in both roles -- caretaker and person in need of caretaking -- sooner or later. As understandable as this denial may be, we indulge in it at our peril.

Here is a real-life example of what it is like to be a caregiver:

Sarah, age 42, has two daughters ages eight and six. Prior to marrying and having her daughters -- and then being diagnosed with multiple sclerosis -- Sarah was a very successful corporate executive. She earned a high salary, which she invested well. Even in the face of what we've come to call the "Great Recession," Sarah's investments yield her an income that significantly supplements what her husband earns as regional manager for a national auto parts chain.

Sarah has one sibling, an older brother who lives with his family in the Southwest. Sarah and her family live in the Northeast, in a comfortable home in a desirable suburb with good schools and ample land that the Town has purchased and designated as open space. Her parents live in the house Sarah was raised in, about five miles away. Her husband's job requires regular travel, so Sarah does the bulk of the day-to-day parenting and generally manages the household. She has been asymptomatic from her MS for nearly a year. Fortunately she was diagnosed early, and treatment using immunosuppressant drugs appears to be slowing the disease.

For the past two years Sarah has also had to cope with the fact that her mother was diagnosed with Alzheimer's disease. Though Sarah herself has spoken with her mother's doctors and knows that her father has as well, neither of her parents have been willing to accept this diagnosis. Both insist there is "nothing wrong" with Sarah's mother. This is true despite the fact that Sarah's daughters are aware that their grandmother does not always get their names right, and the fact that Sarah's mother often will call her three times in an hour and not remember any of the calls, and the fact that on more than one occasion she has wandered out of the house and gotten lost in the neighborhood she's lived in for some 40 years.

Sarah's situation is far from unique. She has two children to raise, and a marriage. She has a house. Though she does not work, she has chronic illness that needs attention. On top of that her parents are aging, and her mother is slowly but inexorably being overtaken by Alzheimer's. She feels obligated to visit her parents several times a week when the girls are in school. Because her mother has lost almost all of her ability to organize and prepare meals, and because her father, despite his best efforts, has limited stamina, Sarah does double-duty in terms of housework and cooking. She prepares meals at her parents' house, and at home she's developed a habit of doubling recipes, freezing half, and bringing it to her parents. She also drives her parents to her mother's medical appointments. She finds these frustrating because of her parents' refusal to acknowledge the Alzheimer's (which the doctor simply accepts), but she has found that speaking up only creates a ruckus.

Sarah expects to be "sandwiched" this way between her children and her parents indefinitely. Her husband has been supportive, and has even volunteered to do some repairs at her parents' house, but Sarah also wants a marriage and knows tat her husband misses her when he is away on business. So far her health has been ok, but she's been told by her own doctors that excess stress could cause her MS to worsen. One has even recommended that she learn to meditate and take time to do it twice a day.

Could Sarah use some support and caregiving for herself? You bet she could. But until recently she has had no support "network" whatsoever outside of her husband (when he's at home).

In the process of writing our book, "Saying Goodbye: How Families Can Find Renewal Through Loss," Dr. Barbara Okun and I discovered an emerging online "community" of organizations devoted to caregiving and supporting caregivers like Sarah. This is a welcome development, and it appears to have emerged as a result of several factors: the fact that terminal illness, as opposed to sudden death, has become the rule rather than the exception; the fact that we live in an era of the far-flung family, where potentially supportive relatives and friends may not be close at hand; and, finally, the fact that the vast majority of families must rely on two breadwinners for financial survival, which leaves them precious little time to spare. Given these realities, the question is: Where can we turn to for support?

Not long ago it was popular to lament the Internet as a phenomenon that caused people to become isolated. Now it appears that the Internet is also a blessing, in that it has given birth to an online community that caregivers can turn to. By accessing this community caregivers can find advice and information, support and dialogue, and even concrete help that allows them to restore some balance in their lives. Sarah did just that, by logging on to thefamilycaregiver.org. I'd encourage caretakers to check this site out, and to look for similar sites whose purpose is to coordinate support for the growing network of caregivers. Please share your experiences of finding support through the Internet.

http://www.huffingtonpost.com/joseph-no ... 84065.html


Top
 Profile  
 
 Post subject:
PostPosted: Mon Dec 20, 2010 2:55 pm 
Offline
Registered User

Joined: Mon Dec 20, 2010 12:56 pm
Posts: 1
thanks for sharing those stories..

i thought i was alone.. i thought i was the only one caring for..

:)


Top
 Profile  
 
PostPosted: Sat Jun 15, 2013 5:08 pm 
Offline
Registered User

Joined: Thu Jun 13, 2013 5:33 pm
Posts: 6
Hi Mary,
Awesome threat with helpful link so thanks for making a threat on cancer and sharing this link with others. Found great stuff here and as very less work is done for cancer awareness so bookmarked the link for further reference. Keep sharing informative material.
Chiropractor Libertyville


Last edited by Jesse on Mon Aug 05, 2013 12:29 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject: Re:
PostPosted: Wed Jul 31, 2013 9:35 pm 
Offline
Registered User
User avatar

Joined: Mon Dec 24, 2012 1:14 pm
Posts: 25
Location: Syd, AUS
marrie wrote:
thanks for sharing those stories..

i thought i was alone.. i thought i was the only one caring for..

:)


Sometimes it definately feels like we're alone. But its nice to know there are others who care about their loved ones as much as me. :)


Top
 Profile  
 
PostPosted: Mon Aug 05, 2013 8:08 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Caring is a tough journey, probably harder than being a patient. There is always support to call on - its up to us to ask for it. Whether its family, charity, 1800 number or friends. People feel they don't want to be a burden, but a trouble shared is a trouble halved.

Cheers Ken


Top
 Profile  
 
PostPosted: Wed Jun 18, 2014 4:00 am 
Offline
Registered User

Joined: Sun Jun 15, 2014 7:38 pm
Posts: 10
Yeah that's right.
It's so hard to be a caring of a patient, It's better to be a patient then caring someone. But it can be easy if we understand what the patient is suffering from.


Top
 Profile  
 
PostPosted: Thu Jul 03, 2014 4:41 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Certainly letting go through being cared for can help to alleviate stress. But at some point in hospital being told when to eat, drink and breath all the time wears thin. That's when its time to get out.


Top
 Profile  
 
PostPosted: Tue Jul 08, 2014 2:44 pm 
Offline
Registered User
User avatar

Joined: Mon Dec 24, 2012 1:14 pm
Posts: 25
Location: Syd, AUS
kenobewan wrote:
Certainly letting go through being cared for can help to alleviate stress. But at some point in hospital being told when to eat, drink and breath all the time wears thin. That's when its time to get out.


I can definately agree. My partner has been in hospital for 1 year 2 months and is still there. He has become instituationalized!


Top
 Profile  
 
PostPosted: Wed Jul 23, 2014 3:02 am 
Offline
Registered User

Joined: Sun Jun 15, 2014 7:38 pm
Posts: 10
ashony wrote:
kenobewan wrote:
Certainly letting go through being cared for can help to alleviate stress. But at some point in hospital being told when to eat, drink and breath all the time wears thin. That's when its time to get out.


I can definately agree. My partner has been in hospital for 1 year 2 months and is still there. He has become instituationalized!

Oh dear I know it' s so hard, sorry to hear that..


Top
 Profile  
 
PostPosted: Thu Jul 24, 2014 9:12 am 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Thanks for sharing


Top
 Profile  
 
PostPosted: Fri Jul 25, 2014 9:18 am 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Its a tough journey!


Top
 Profile  
 
PostPosted: Fri Jul 25, 2014 3:08 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Talking with someone can help too :-).

Online communities have the potential to be a useful resource that caregivers can turn to.


Last edited by kenobewan on Fri Aug 01, 2014 4:20 pm, edited 1 time in total.

Top
 Profile  
 
PostPosted: Tue Jul 29, 2014 3:08 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Great link to important topic. Please remember to take care of carers too. I agree that the importance of carers should not be underestimated. Carers, I believe, should monitor their stress levels and ask for help.


Last edited by kenobewan on Fri Aug 01, 2014 4:18 pm, edited 1 time in total.

Top
 Profile  
 
PostPosted: Sun Oct 12, 2014 1:22 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Hope things are going well


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 15 posts ] 

All times are UTC + 10 hours


Who is online

Users browsing this forum: No registered users and 1 guest


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
cron
Powered by phpBB® Forum Software © phpBB Group
[ Time : 0.075s | 15 Queries | GZIP : Off ]