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#148465 - 04/18/12 04:01 PM Advice on supporting caregiver
rsullivan Offline

Registered: 04/18/12
Posts: 1
Loc: MI
My husbands best friend is at the end stages of oral cancer. His wife is holding up (they have 3 daughters) the best she can. They are getting plenty of food delivered and have his mother to help out.

My question is....what can I do to support her without invading her privacy? I send her texts telling her I am praying for her and thinking of her and that we are here in anyway- but I know she would never reach out for any help. We feel helpless. I read somewhere that when things calm down to just call her and inform her that we are going to lunch, or to the movies, or to the mall at a set time- or that I am coming over to cut the lawn or walk the dog or take the kids to the movies. And not give her the option of saying no.

Do any of you have advice for me?


#148470 - 04/18/12 04:39 PM Re: Advice on supporting caregiver [Re: rsullivan]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Becky - you sound like a wonderful and caring friend to have. Keeping in touch with your husband's friend's wife I'm sure is helping her to feel connected and supported. It is not always easy for people to ask for help. Perhaps you could make a list of things that you would be available to do and then let her choose. And let the Mother know too (the one who is helping out). She may be able to help decide what is most needed.
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)

#148471 - 04/18/12 04:42 PM Re: Advice on supporting caregiver [Re: rsullivan]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
What a good friend you are, Becky! I guess you just have to let your friend know that you are there for her. When I was going through my treatments, my husband was very reluctant to leave me alone. I was having a really rough time with them. I also didn't really want to see anybody, but a couple of my friends came and my daughter came and sat with me, so that my husband could get away even just for an hour or two. Both of us found that really helpful. Getting someone to come and sit with your friend's husband, while you take her to lunch or something would be great. Caregivers often have it just as rough as the patients.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

#148526 - 04/19/12 10:33 PM Re: Advice on supporting caregiver [Re: zengalib]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Hands down best thing my step daughters did for me was housework. I didn't know how to ask or what to ask for, and one day after visiting their dad they just stepped up and did laundry dishes, etc. When I came out of our bedroom to a clean house, my heart just filled to bursting with love and some of the massive weight was lifted.
Sometimes, for me, just trying to make another decision (what can you do to help?) was impossible. Especially near the end.
Having someone just DO IT was amazing.

If his mother is there to be with him, try to get her out of the house for a while, even if it is just a walk around the block.
Let her cry, let her talk, hold her hand. She is blessed to have you, Becky.

CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.

#148642 - 04/22/12 09:49 PM Re: Advice on supporting caregiver [Re: CMMoore]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9428
Loc: PA
Becky, all too often people are not comfortable taking that first step to reach out for help. Its very kind of you to offer your help to them. It would be very helpful to pass along this website's address and let them know there are many others out there who have been thru this and can help them.

Try asking if you could 'borrow' the children for a day. Take them out to the movies and maybe to dinner. When I was sick, I wanted my kids to be ok. I worried so much about them having a normal life and that I was not making things hard on them. By taking the girls out for a few hours it will give them a much needed escape from whats happening in the home. It allows the parents time to catch their breath without having to attend to the kids. Try to take them out once a week, say every Saturday from 2 to 7. I think this would be a great way to help.

Its very kind of you Becky!!!!
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

#148649 - 04/22/12 11:31 PM Re: Advice on supporting caregiver [Re: ChristineB]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
GREAT idea Christine...That would have been awesome for us. Just to know the kids would get some fun time. The guilt over them giving up their summer was huge for me.
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

#148669 - 04/23/12 07:10 AM Re: Advice on supporting caregiver [Re: KP5]
Jeanna F Offline
"OCF Down Under"
Gold Member (200+ posts)

Registered: 08/19/09
Posts: 207
Loc: Melbourne, Australia
What a wonderful friend you are Becky. When my husband was in treatment and coming out of it, I asked his sister if she could ask one of her sons to come & help me with the lawns...she said no, so I never asked for help again, not even letting my family help when they offered. I think Christine is right...if you ask if you can 'borrow the kids'....that will give your friend a break to a degree, and quality time with her husband. You are an angel...Bless you.
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.

#148677 - 04/23/12 10:53 AM Re: Advice on supporting caregiver [Re: Jeanna F]
WendyG Offline
"OCF Down Under"
Platinum Member (300+ posts)

Registered: 07/01/09
Posts: 448
Loc: Nth Qld Australia
Becky I think the best thing I can suggest is just to visit, be there for them and make them smile. The most precious moments to me throughout all of this was when someone walked in our door, just for a cuppa. It brightened our day, it was something normal and if they made me laugh or steve laugh it had been a wonderful day. Just visit, just be there. That's all we ever needed.

Also my mum was my rock. She did all my housework and groceries for me. She figured if she did all that then the time I had could be spent with Steve and I will forever be grateful to her for that. She never asked what we needed, she just did what she saw needed to be done. The last thing I had time or even thoughts towards was what could I get people to help with. I'm not one to ask for help and I didn't have the time to even try to ask. So be like my mum and just do. You are an amazing friend to be here even asking and thinking about this. Whatever you do for your friends it will be right and it will be needed, of that I have no doubt.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed.

#148679 - 04/23/12 11:30 AM Re: Advice on supporting caregiver [Re: WendyG]
samkl Offline
"OCF Down Under"
Gold Member (200+ posts)

Registered: 10/02/11
Posts: 225
Loc: NSW, Australia
Throughout my brother's treatment an old saying kept coming to mind."Work is love made visible". Sometimes to relieve people of drudgery, housework, lawns to be mowed - whatever - is all you can do, but it is an enormous load to relieve people of at such a time. I agree with Wendy - whatever you do will be right.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.

#148760 - 04/26/12 12:48 AM Re: Advice on supporting caregiver [Re: samkl]
Gerri Offline
Supporting Member (50+ posts)

Registered: 08/03/10
Posts: 75
Loc: Nebraska, USA
This is so nice. The hardest thing to ask for help for me was those little odd jobs around the house that Jim handled. Loose this, leaky that, etc. The things that can be let go. My house was unorganized mess, I'd just shove things anywhere out of the way to keep his area comfortable. It's hard to ask for help with that. My sister also helped with organizing bills, making sure insurance paid as it needed to be and even fighting those battles for me. That was a huge load.

Edited by Gerri (04/26/12 12:49 AM)
Edit Reason: Typo
CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11

#148808 - 04/27/12 09:46 PM Re: Advice on supporting caregiver [Re: Gerri]
youngwife Offline

Registered: 06/17/11
Posts: 1
Loc: Alberta, Canada
I agree with Gerri. With all the other responsibilities that I have taken on since M got sick, the thought of having to deal with those little home handyman type things is sometimes too much. A few months ago with M in hospital I was also trying to book a plumber to come to the house (1 hr from hospital) and found myself in tears (which is NOT the normal me).

I also like the idea of a list of options to let her choose what she would like you to do. My parents did this for me and it made it much easier to start asking for help when they gave me a list of things they were prepared to do to help out. It makes it easier to know where to start.
Wife/Caregiver of M:
SCC tongue Jan 2010, age 29|Hemiglossectomy, neck dissection Mar 2010|Recurrence June 2011|Surg. July 2011 bone/tissue graft,neck dissection|PEG Aug 2011|TX Rad & Chemo|Infected jaw hardware removed Apr 2012.

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