Author Topic: how best to care for the caregivers  (Read 11053 times)

cassieb

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how best to care for the caregivers
« on: March 14, 2011, 11:33:22 pm »
my surgery hasnt been scheduled yet, were still in the research/prep phase. but i would love some ideas or suggestions on how to make it easyer for those i love. what sort of preparations i can do to take the load off my BF who will be caring for me. weve already talked to one of my best freinds whos decided to rent a room from us and volunteered to help care for me and the house as well. so they can split the financial/emtional/everything burden a bit. is there ne thing i can do that will help them pre surgery, durring, or post? im also very concerned about my mother, she tends to worry and already has anxiety issues.
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.

Kaybo

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Re: how best to care for the caregivers
« Reply #1 on: March 15, 2011, 08:12:46 am »
I can't think of a lot that you can do now except freeze some meals ahead. I think the main thing is for you all to sit down and REALLY talk about how you think this recovery might go and thoughts & expectations. Many times, we hurt the ones closest to us - just because they are there. This CAN (or not) be a long recovery process that takes a lot of PATIENCE by all involved. Sometimes we (the patient) lashes out in frustration at the caretaker. Make sure they know that ahead of time!! It's just all the medicine (at first) & the desire to be all better - RIGHT NOW!
It's really going to all be OK...

;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

moe

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Re: how best to care for the caregivers
« Reply #2 on: March 15, 2011, 08:57:43 am »
Hi cassieb,
Kay made great suggestion ;) and it is good to talk ahead of time that your recovery varies so much on how involved the tumor was, how much of the balance nerve was affected, etc.

It will be beneficial to have someone with you for the first couple weeks to help with housework, meals, laundry. The main thing for YOU to do when you get home is to rest, rest, walk, eat, drink plenty of fluids, rest, ....you see the pattern, and NOT worry about all the other stuff.

 I enjoyed listening to music or books on tape or DVD when I got home (but then I had headaches post op, which went away). Just don't over do it, and watch the bending completely over, if you're feeling real good and decide to start doing stuff-may contribute to post op headaches.

I do remember going through bills when I got home though! Slow an easy, it will all work out, you'll see :) One day at a time....Stay busy as possible before surgery. Freezing meals is a great idea, and exercising if you are into that, is good to to help with recovery.

Let us know when your surgery is. How big is your tumor? We like to know details ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Tod

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Re: how best to care for the caregivers
« Reply #3 on: March 15, 2011, 02:35:07 pm »
From my perspective, both as a patient and previous caregiver, I would add to the good suggestions you have been given, two ideas:

1) Let your family know that will be okay, especially after the first couple of days being home, that it is OKAY to wait to do something until YOU ask. At some point in the healing, it is important to for you to take over doing things for yourself. As nice as it may be to be waited on hand and foot, it tends to slow down the healing process. More importantly, you'll never have a clue has to how you are healing if you don't try and fail, or try and succeed.

After two weeks in ICU and just one night in a regular room, they let me go home. I could barely speak, barely walk. I had no idea if I could make it up the stairs at the house, but by God, I wanted to be home to rest. My dear wife just walked head of me, went up the five stairs opened the door and just watched. She's a special ed teacher and felt she should wait until I asked for help. She was right.

2) Talk to a couple of friends or distant family members to be caregivers to the caregivers. In other words, ask them to periodically call and, instead of asking about how you are doing, ask how they are doing. When my sister was taking care of our mom in the final months of mom's life, everybody would call or email and ask about mom. Except me. Each day I asked my sister how she was doing. This gave her the opportunity to vent or cry or simply know that someone was looking after her needs.

I hope this is helpful,

Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

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CHD63

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Re: how best to care for the caregivers
« Reply #4 on: March 15, 2011, 04:17:49 pm »
Tod has an excellent suggestion for someone to be the caregiver to the caregiver.  We (and I am just as guilty as anyone) tend to focus on the welfare of the patient, when often it is the caregiver who is exhausted from dealing with the patient and needs some TLC, as well.

In my case, which was an uncomplicated surgery, I was in the hospital for 6 days.  When I was released, I really was totally able to care for myself, but it was great to have someone to cook and clean for a couple of weeks.  I had significant balance issues so it was comforting to my husband, who needed to return to work, to have our daughter-in-law stay with me for the first week, in the event of a fall (I did not.).

It is impossible to predict what any one person's recovery will be like ..... too many variables.  My advice would be to have several plans in place ..... minimal help for a short period all the way up to a month of help, if needed.  I would definitely either have food prepared and frozen ahead of time or arrangements made for at least a couple of weeks after coming home.  Under normal circumstances you should be able to take care of yourself soon after arriving home.

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

cassieb

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Re: how best to care for the caregivers
« Reply #5 on: March 15, 2011, 08:59:59 pm »
1.4cm so not big, its actualy not an AN but a cholesterol granuloma, i couldnt find any group out there for choleterol granuloma so i started looking at the procedure done and what other things were located in the same area and found this group. i figured regardless of differnt Dx the recovery would probably be the same or similar. i have a friend lined up to help, as well as my bf and my mom. im thinkin of asking my step dad to take care of my mom emotionaly she doesnt handle stress well and has anxiety issues this is all just one more thing for her to fuss over. my bf on the other hand handles everything great n majored in psych so he knows if i get upset a bit that its stress realated. other than that im having trouble bringing up the procedure and recovery with everyone. im trying to discribe to them everything and sit down and plan for any possibilities (longer time out of work, loss of job r/t dissablity, ect) but no one seems realy keen on talkin about it. they keep saying 'just wait and well see', or 'i doubt that will happen if it does well deal with it'. but i want it lined out ahead of time to make sure the plan was thought up when were calm not a gut reaction due to stress. and to take the worry off of them if it happens. i think its that they dont want me to think about it but it helps me feel more in control to have plans for the 'just in cases'. im actualy considering setting up a binder with all my information regarding surgery, doctors, and making a section for my will and power of atourney, long term dissablitiy and life insurance info, and what i want done for the possible ifs. would this help them without having to make them think about somthing they dont want to think about?
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.

CHD63

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Re: how best to care for the caregivers
« Reply #6 on: March 16, 2011, 06:53:20 am »
I can fully understand your feelings of being out of control of what is going to happen.  While that is true, each of us deals with this situation in his/her own way.  Some people do not want to think about it, all the way to those who want all possible scenarios covered.  We have to respect both ways and everything between.

IMO, if it makes you relax and feel better, go ahead and set up a binder with all of your information ..... with one word of caution ..... if it begins to stress you out more, STOP.  Along with that, if it were me in your situation, I probably would not share this binder/information with my loved ones until either A) they asked for it or B) they needed it ..... since they do not seem ready to deal with it.  Many times the caregiver(s) feel so helpless and this adds too much to their stress.

Please do not think in terms of disability.  Only a rare, very few, AN patients have needed to go this route and that was usually because they were in a physically demanding career and they had complications, which are also rare these days.  I do not know anything about cholesterol granulomas, but unless a doctor has specifically told you you would be disabled, I would not even go there in my thinking, if I were you.

Best wishes.

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

moe

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Re: how best to care for the caregivers
« Reply #7 on: March 16, 2011, 09:03:09 am »
Good advice, Clarice, and totally agree!

Cassieb,
If you want to do those things for your own peace of mind, by all means go ahead with it. I agree that it will cause undo stress for your caregivers.

I had a complicated AN with facial nerve cut. The AN had totally engulfed the nerve and the branches were affected so I didn't get the function back. But I have no other problems, except for tinnitus, which nothing can really be done  for.

 Going into surgery I didn't give it a second thought about the what ifs. I had and still do have the utmost trust in the physicians and their expertise. So rest assured you will be in very good hands and the odds for complications really are minimal.

 I lead a totally normal life, just like before. I just need to take things slower, and rest, but I'm able to run the house/bills in all aspects (I'm called the House Manager) and work part time as  home health RN.

Peaceful wishes :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

cassieb

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Re: how best to care for the caregivers
« Reply #8 on: March 18, 2011, 08:38:41 pm »
thanks for that, maureen hearing that you can still keep up atleat part time realy makes me feel better. im private duty home health, its similar enough that i know i can keep up then if somthing happens. i guess im just grasping for any bits of control i can have at the moment. my mom seems honestly interested in my research, shes doing her own as well, and tells me she feels better and more relaxed after she talks to me about it. my step dad is the 'dont think about it type' and is trying to tell her not to research or talk to me about it, i dont think he understands that there are both types of people. im pritty stubborn so im sure ill be on my feet quick weither they like it or not. i am concerned about the finances and getting back to work. but hearing that you kept the ball rolling helped with that concern.
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.

moe

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Re: how best to care for the caregivers
« Reply #9 on: March 18, 2011, 09:41:39 pm »
Attitude is everything, so keep that "can do" attitude ;D Really, everything will work out. ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

ppearl214

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Re: how best to care for the caregivers
« Reply #10 on: March 19, 2011, 05:21:30 am »
cassie

I can finally jump in on this.

Yesterday, I was having my hearing test and meeting with my NS (who follows my AN as well as another issue).  I was in her waiting room and noticed a brochure, by the National Brain Tumor Society (I am a volunteer for them as well).  The name of the brochure is:  "Coping with your Loved One's Brain Tumor:  A guide for Family and Friends".  I grabbed a couple of copies as we have a local ANA Support group meeting tomorrow and wanted to bring these with me to the meeting.

Please use this link here for this info:

http://www.braintumor.org/patients-family-friends/find-support/caregivers/

I would highly encourage pursuing add'l lit from them (reachable at:  800-934-2873... tell them Phyllis, NBTS Volunteer for AN's suggested you contact them... they know me.....)

The ANA also provides helpful tips on the home site:

http://www.anausa.org/index.php?option=com_content&view=article&id=129&Itemid=130

These are 2 terrific starting points for helping to prepare those around you with your upcoming treatment and post-treatment......

just a suggestion.

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

cassieb

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Re: how best to care for the caregivers
« Reply #11 on: March 19, 2011, 08:43:18 pm »
this is great info thanks phyl
1.4cm 'something' named almond(hopefully probably possably cholesterol granuloma) still getting tested to find out what it is,
Jefferson university hospital, Dr Artz.