Author Topic: Ten Things Every Caregiver Needs to Know  (Read 15841 times)

ppearl214

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Ten Things Every Caregiver Needs to Know
« on: April 21, 2009, 01:22:03 pm »
As some of you know, I am now in a primary caregivers position that is not AN related, but have been reaching out to support groups to help better educate myself for what lays ahead... and this list was shared with me. Now, in reading this, this is so very applicable, as well, for those that are the caregivers to AN patients. So, I thought I'd share this with you all.... I know I have gained from it... hoping many of you do as well.....

Hugglez.
Phyl

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Ten Things Every Caregiver Needs to Know   
 

YOU ARE NOT ALONE.  ASK FOR HELP.  This may be new to you-but countless others (over 50 million in this country alone) are caregivers.  Many have been successfully coping for as long as families have existed.  The trick is to find those who do it well and be open to what they have to teach.

BE AN INFORMED CONSUMER.  Whatever the cause of your loved one’s frailty, research and learn all you can about it and available services. Take advantage of discharge planning and home care services. Talk to professionals in the field, and let them guide you, but also use the Internet, and libraries to help yourself understand as much as possible.

WRITE IT DOWN.  Buy a small sturdy notepad or address book to log in names, dates and information.  Always keep it with you because you never know when you will need to refer back for clarification or reach out to a contact person.

BRAIN OVERLOAD.  Recognize that your abilities to concentrate, organize & delegate will be tested, and eventually strengthened as you decide to move forward.

BE ASSERTIVE, NOT AGGRESSIVE.  Learn how to effectively communicate with the professionals providing care for your loved one.  Learn their names, keep notes so that you can ask direct questions, and note the answers. 

DO NOT ASSUME THAT DIRECTIONS ARE FOLLOWED.  We are all human.  Reviewing any change in your loved ones care plan and or medications is essential.  Make yourself available for care plan meetings-you will help the professionals understand your family dynamics, and you will learn of changes and recommendations.  Follow through with all involved. Have the changes been implemented? Are those changes are having a positive effect for your loved one?

DESIGNATE ONE FAMILY MEMBER TO BE THE PATIENT’S ADVOCATE.  The professionals providing care will need one person to communicate with.  All other family members need to support that person the best they can.  Use this opportunity to come together; there is no time or energy for negative behavior, whatever your differences-put them aside.

PRACTICE LISTENING.  It’s harder than you think, but by learning to listen you can shut off the chatter within you and open yourself to truly engage in what others have to offer.

PROMOTE INDEPENDENCE WITHIN PROPER CONTEXT.  We all need to feel that we are in control of our lives.  Imagine an event that would render you incapacitated to some degree.  How would you feel if your advocate made your feelings and desires less significant than their own?  Of course, proper context is the key.  But always consider how you would feel in that person’s place.

MAINTAIN AN INDIVIDUAL’S INTEGRITY.   Do not project your feelings, wishes or intentions to your loved one.  Presumably they have expressed their wishes previously; hopefully all legal documents are in order.  Deal in fact, do your best to not make very important decisions when overwhelmed with emotion.  Above all pray for grace, and nourish your sense of humor.
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jackie

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Re: Ten Things Every Caregiver Needs to Know
« Reply #1 on: April 26, 2009, 06:42:33 pm »
Hello Phyl,

That is wonderful advice, and I am sure will be very useful to those that are in a caregiving situation. We never know when we may become that caregiver or reciever so we should all share this information with others. A mighty thank-you to Phyl for another inspiring post.
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

ppearl214

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Re: Ten Things Every Caregiver Needs to Know
« Reply #2 on: November 11, 2009, 03:34:01 pm »
I had to re-read this today... and know many on these forums that this would apply, esp for recent new posters/loved ones that could gain from this. My caregiver's role has now beefed up 10-fold and I had to re-read this to remind myself that I am not alone in what I endure... and how these 10 things truly mean more to me today then when I did the post in April (at the time of my loved one's diagnosis).

I would love to hear from other caregivers here (I've dropped my *coff* subtle Phyl-hint to a few) in the hopes that they will share how their caregiving role in the AN Journey has come to play... and if this list is applicable for all they do/endure.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pjb

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Re: Ten Things Every Caregiver Needs to Know
« Reply #3 on: November 23, 2009, 08:09:57 am »
I to was a caregiver for my parents who then died within 6 months of each other and wished I had your list I just went by trial and error.  That is very thoughtful of you in sharing it with others and my prayers go out to you in the days ahead while you are still I am sure dealing with your own problems.  Sometimes people forget about the caregive a simple "How are you doing" means so much and I to am asking you how are you holding up ?
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

ppearl214

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Re: Ten Things Every Caregiver Needs to Know
« Reply #4 on: December 02, 2009, 07:09:38 am »
I'm hanging in there, pjb, thank you for asking! :)  I'm sorry to hear that you traveled a very difficult road with your parents and my thoughts/wishes are with you.  Trial and error does seem to be a common thread when it comes to caregiving (even in the AN world) as each person/patient and their situation is unique unto themselves.  I'm working with professionals for guidance during my caregiving role yet, also trial and error as you note... and take each day as it comes forward as it seems to be the only way to try to make each day a good one... not just for my loved one but for me as well.

Hugglez to all caregivers here......
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

CHD63

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Re: Ten Things Every Caregiver Needs to Know
« Reply #5 on: December 02, 2009, 07:22:01 am »
Phyl .....

I know this is off-topic, but it sure is nice to have you back posting again ..... I was worried about you!

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

pjb

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Re: Ten Things Every Caregiver Needs to Know
« Reply #6 on: December 02, 2009, 07:39:35 am »
If you need to just talk or vent don't hesitate to contact me from someone who knows what you are going through and my prayers will be with you..and remember to take care of yourself you need to keep up your strength that comes first...

Regards,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

ppearl214

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Re: Ten Things Every Caregiver Needs to Know
« Reply #7 on: December 03, 2009, 07:23:07 am »
Phyl .....

I know this is off-topic, but it sure is nice to have you back posting again ..... I was worried about you!

Thoughts and prayers.

Clarice

Clarice.....  :-*  :-*  :-*  :-*  :-* to you.. and Truman! I hope he is feeling better!

Hi Pat and thank you for thinking of me and your very generous offer. Actually, I'm doing ok.  As I am a firm believer in support groups (hence, my participation on these forums for ... I think.... 4 yrs....)   I also belong to local support groups helping the cause as well.  Like any caregiver, I have good days and not-so-good days but overall, I'm hanging tough.  As everyone here knows, my inbox is also always open to anyone feeling the need to drop me a note..... and that is what I love about this Discussion Forum. We are truly a "family" and here for each other... so, again, I say thank you for reaching your hand and shoulder to me!  :-*

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

CHD63

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Re: Ten Things Every Caregiver Needs to Know
« Reply #8 on: December 03, 2009, 07:32:52 am »
Phyl .....

My sister has been a full-time caregiver for ten years ..... since her husband suffered a severe and debilitating stroke ..... and I know she sometimes has periods of total burn-out and it is difficult to know how to be very helpful and/or empathetic at those times.  You have become my AN sister so I guess I am carrying over my concerns to you, as well.  Wish life did not have to be so unfair sometimes.

Truman is doing much better.  His ticker has responded to medication so we are very grateful.  Thanks for asking.

My thoughts and prayers continue .....

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

pjb

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Re: Ten Things Every Caregiver Needs to Know
« Reply #9 on: December 03, 2009, 08:23:21 am »
I also want you to know I am not that computer savvy I tried to e-mail someone and I do not think it worked and to go into different links I get to flustered and just give up but I am trying someday I will be an expert.  I am getting a little better since I had first started on this forum I do not think I responded to people they way I was suppose to, at my end here it is a comedy skit with me on the computer...at least I can laugh at myself....

Again my prayers are with you, you will find the strength I know at the moment you cannot foresee that but trust me you will.

Regards,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

ppearl214

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Re: Ten Things Every Caregiver Needs to Know
« Reply #10 on: December 04, 2009, 05:11:20 pm »
Clarice... Pat.... truly... thank you!  The love and support you both give... and for all those forumites here that consistantly reach out with hugglez and hearts and shoulders and hands....I commend you all!

A rough road we walk as caretakers..... but walked arm-in-arm with others makes the travels much easier. I thank you!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pjb

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Re: Ten Things Every Caregiver Needs to Know
« Reply #11 on: December 05, 2009, 08:24:27 am »
I don't know if this is inappropriate but it does put life in perspective I am very sad at present and will stop pitying myself for past and present illnesses.  My daughter was an acquaintance with a woman of 27 who just purchased a home with her husband had an adorable baby boy in October '09 and was put on a vent right after her family did not know what happened.  She regained consciousness a week before Thanksgiving went home only to be readmitted the day before Thanksgiving and was put on a vent again she just died December 2, now her son will never know his mother and her family is devastated.  I am sorry for writing this but sometimes it helps us sit back and say we should be thankful for what we have  because there is someone or something out that is suffering just as much or even more....


Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

CHD63

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Re: Ten Things Every Caregiver Needs to Know
« Reply #12 on: December 05, 2009, 08:53:05 am »
Pat .....

My heart aches for this little boy and his daddy!  We have become so complacent these days when medical care has come so far ..... and yet, we are jerked up once again when something like this happens.  Kind of puts things into perspective again .....

Thanks and thoughts and prayers to this family.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ppearl214

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Re: Ten Things Every Caregiver Needs to Know
« Reply #13 on: December 05, 2009, 09:02:45 am »
Pat, I am SO sorry to hear of this loss... someone so young and vital and so much to live for and to give.....  my condelences to all those affected by this loss.

40 yrs ago today (Dec 5)..... wow, I can't believe its 40 yrs.... my sister died of a brain tumor (malignant childhood astrocytoma).  I watched my parents care for my sister in her last days and the love that was given when they were informed of what was to come.  As a parent, as a loved one... to watch someone so young slip away from our world is truly devistating.  Last night, as I sat there thinking of my sister, who was 13 when she passed, the tears, even after all of these years, flowed like it was yesterday.  But, I also recognized that it was people like my sister who helped the medical community to forge forward with new/improved treatment options to help folks like us endure (just as Clarice noted as well).  40 yrs ago, GammaKnife radiation was in its infancy... and now look at all those that GK treat.... we've come a long way since then.

I know as caregivers, regardless if my folks for my sisters (and me)... for your daughter's friend.... for those around us, for those caring for AN patients during our treatments.... the mental strength and endurance that one must have is amazing to me.  I know folks find it within themselves to keep forging forward, as they watch someone in their lives suffer such terrible times, but again, I have to commend all those that do... whether out of love, or responsibility or whatever.  It's takes someone very special to help the one with ails push along.... and again, I give my hugglez to all those that do.

Phyl
« Last Edit: December 05, 2009, 09:04:36 am by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pjb

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Re: Ten Things Every Caregiver Needs to Know
« Reply #14 on: December 06, 2009, 07:29:29 pm »
I am so sorry about your sister I cannot imagine what you and your family went through no parent ever......wants to go through that, we as parents are suppose to pass before our children and not the other way around.  I am sure those 40 years feels just like yesterday and hope that you can remember the 13 years that you were blessed to have been part of her life. Yes so many different types of surgeries that are now being done is short of a miracle compared to many years ago, we do have alot to be thankful for and I hope you can be strong in your role as a caregiver.

Regards,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.