How To Deal With DH Family

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CrossfitChick1980
Posts: 54
Joined: Wed Nov 25, 2015 9:40 pm

How To Deal With DH Family

Postby CrossfitChick1980 » Tue Oct 30, 2018 9:10 pm

It has been some years since I posted and I am desperate for advice. My husband, after Mets returned to liver, was deteriorating pretty quickly. He was in quite a bit of pain, the first time he has ever felt cancer pain since his diagnosis. We finally got his pain under control and have moved forward with chemo and therasphere treatment. Since he has been so sick, his family feels the need to come visit almost every weekend and I feel myself growing resentful. I have been a caregiver to my husband for almost five years. I do not need help caring for him- however it would be nice if his family helped out with our children when in town to allow me to spend quality time with my husband. My husband even complains about the visits because he is too exhausted to entertain anyone. If any of you have faced this situation, how do you deal? I am at my wits end with visits!
Caregiver to DH dx with Adenocarcinoma of Small Intestine
Mar14- Small Bowel Resection (dx @31)
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda (MSS, KRAS)
Jul16- Maintenance Chemo
Jun18- Cancer is back in liver
Sep18- Lonsurf
Oct18- Therasphere txment (failed)
Dec18- Folfiri/Avastin
Dec 22 2018- He is no longer suffering- My Love is sleeping in Peace

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: How To Deal With DH Family

Postby ginabeewell » Tue Oct 30, 2018 9:19 pm

Not being in your shoes, I think I would use the stage as a means to the conversation.

"It's so nice that you are so committed to visiting, but at this stage of the disease, we are finding that DH is too fatigued to visit. What we really need is someone to watch the kids while we have some time to relax and reconnect out of town. Would you be willing to do that?"

I have been shocked at how hungry people are for specific suggestions. You'll be giving them a gift by stating how things have changed and letting them off the hook for past unhelpful visits if you frame it as "what we need now."
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
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https://www.weareallmadeofstars.net/col ... nt-journey

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https://weareallmadeofstars.net/favorite-posts

KimT
Posts: 695
Joined: Sat Feb 20, 2010 8:53 pm

Re: How To Deal With DH Family

Postby KimT » Tue Oct 30, 2018 10:45 pm

I’ve been on both sides. My mom was diagnosed with cancer less than a year after my second cancer. Because I had been through it twice, I knew what she needed more than anyone. When people haven’t been through it, they don’t know how to be helpful. Don’t be resentful, they cannot read your mind. You just need to have a frank conversation about how they can help you. They don’t know it’s exhausting when you feel like you need to entertain visitors. I spent hours and whole weekends at the hospital with my mom. She slept a lot of the time. I told her she didn’t have to be awake for me. I would stay with her regardless. It comforted her to know I was there even though she slept a lot.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: How To Deal With DH Family

Postby WarriorSpouse » Tue Oct 30, 2018 10:48 pm

Good suggestion from Gina.

I find that relatives who are from out of town are just starting to process what you (and others) have been experiencing for years. It is like you are in chapter five of a story and they are just entering chapter one of the same book. That is their paradigm, so you can understand where they are compared to you and your husband.

I agree with Gina, tell them what you need and ask for their assistance in accomplishing these goals. It may give them purpose to work through stresses that you and your husband have dealt with years ago. Have a designated visiting hour, but emphasize your needs for privacy and rest.

Best wishes.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: How To Deal With DH Family

Postby NHMike » Thu Nov 01, 2018 1:30 pm

My family (mother and three sisters) showed up at our house on short notice last summer as they were quite concerned and I spent most of the time comforting them and explaining the survival rates, diagnosis, treatment plans and difficulties. And I think that they left less worried and concerned. Two came across the country and the other two were an hour away. I think that they feel that they are providing support in visiting but sometimes it's good to communicate that visitation is tiring or taxing.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

CrossfitChick1980
Posts: 54
Joined: Wed Nov 25, 2015 9:40 pm

Re: How To Deal With DH Family

Postby CrossfitChick1980 » Thu Nov 01, 2018 8:31 pm

Great advice, I think it just boils down to having a Frank and honest conversation. Will not be easy but if I can bring my husband some peace and comfort, I will have to be honest with his family.
Caregiver to DH dx with Adenocarcinoma of Small Intestine
Mar14- Small Bowel Resection (dx @31)
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda (MSS, KRAS)
Jul16- Maintenance Chemo
Jun18- Cancer is back in liver
Sep18- Lonsurf
Oct18- Therasphere txment (failed)
Dec18- Folfiri/Avastin
Dec 22 2018- He is no longer suffering- My Love is sleeping in Peace

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: How To Deal With DH Family

Postby bitchslapped » Fri Nov 02, 2018 2:22 pm

Sometimes people just want to sit on their butts thinking their presence through visiting is a good & respectful way of showing they care. Try not to be resentful of this. It is just being thoughtless. Yes, hard to understand, I know.

Consider sending a group email or text thanking them for taking time out of their day to spend w/us. Simply state that their visits are meaningful & appreciated, yet @ the same time DH finds it a bit challenging carrying on & focusing on conversations @ times...don't be offended if he dozes off here & there. For those that wouldn't mind we are looking for volunteers to lend a hand by fixing, doing XYZ . It would break up the visits a bit for him while getting a few things done to help out of which you both w/b forever grateful.

Perhaps mention what you both miss is occasionally taking a drive together just the two of you, or quiet lunch/dinner, or a movie w/o kids would mean so much to you guys provided he's up to it on any given day.

Find an approach that works for you; ask for volunteers. The more resentful you are, the harder it w/b to present as authentic/sincere or appreciative.

Let go of the resentment no matter how deserved it may be in your view. It's not helping you. People give in their own ways that is comfortable for them. That means it may not necessarily be what a person needs. Try not to be too judgemental of that. Don't lose sight of the fact that everyone is carrying some type of baggage in their own life; this happens to be yours. You are carrying huge luggage w/DH as cancer patient + 4 kids. We get it here on Colon Talk. Depending where others are in their life, their small or medium sized luggage may seem heavy.

If your DH needs to snooze while they are there, that has to be accepted & understood by visitors. If you need to make a quick trip to the grocery store while they are there politely ask if they don't mind. If they do, then maybe they'll stop coming as frequently.

BTW you might even be proactive w/an email if anyone is coming our direction in the near future or the coming weekend as the toilet needs fixing, or you need to make a huge grocery shopping trip! Maybe DH craving some homemade ??? & you've been so busy w/him & the kid's school = no time. Or for out of towners, suggest stopping off & bring something to potluck; you'll supply paper plates & silverware, coffee, soda. :lol: A win-win if you ask me.

Let us know how things work out!

Best Wishes & Good Luck

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: How To Deal With DH Family

Postby zephyr » Fri Nov 02, 2018 2:48 pm

Please excuse me for a moment while I sort of hijack this thread to say: good job, bitchslapped!
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

CrossfitChick1980
Posts: 54
Joined: Wed Nov 25, 2015 9:40 pm

Re: How To Deal With DH Family

Postby CrossfitChick1980 » Tue Nov 06, 2018 8:30 am

Just an update- my DH and I sat down and talked about boundaries and how we would like our families to help out. We got to test our boundaries out sooner than we thought as my husband is in the hospital with blood clots. Upon hearing the news, his mom instantly jumped on the road on the way up. Instead of just assuming she was staying with him at the hospital, we actually told her she is most helpful right now watching our 4 girls while I am at the hospital with my husband. I was actually able to stay overnight! They are still overbearing to my husband at times but he is very direct and can talk to his family in a certain tone and they back off. I truly thank you all for the advice and will continue to communicate our needs to our families.
Caregiver to DH dx with Adenocarcinoma of Small Intestine
Mar14- Small Bowel Resection (dx @31)
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda (MSS, KRAS)
Jul16- Maintenance Chemo
Jun18- Cancer is back in liver
Sep18- Lonsurf
Oct18- Therasphere txment (failed)
Dec18- Folfiri/Avastin
Dec 22 2018- He is no longer suffering- My Love is sleeping in Peace

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: How To Deal With DH Family

Postby crazylife » Tue Nov 06, 2018 2:53 pm

If it helps any, I feel your pain! My MIL will not leave my husband's side during his chemo appts or hospital stays. He was in the hospital for a month and I asked her to watch our kids so I could visit and she REFUSED. She said she has to be with her son. She freaks out if I even mention going to his chemo appts and she stay home. I've been reduced to just being the provider of his health insurance somehow by her. She even told me I can find a new husband but this is HER SON. In her angst, she's even gone as far as to blame me for him being sick. I complain too much which made him sick. I made him watch the kids which made him sick. And on and on. She's a friggin nighmare to say the least.

Do you feel better now? LOL.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

mymom
Posts: 1299
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: How To Deal With DH Family

Postby mymom » Tue Nov 06, 2018 11:01 pm

It’s balance. You are exhausted and don’t want to entertain and he is exhausted as well. At the same time, it’s his family. They love him. They have the right to be around as well. If it was me, I would be up front. They are welcome to visit but you also Need them to take the kids so you and he can spend some quality time together. Be kind but direct. In addition, find some nice local accommodations for them to stay in. Changing sheets, washing linens, having food in the house- not something you can do each weekend. Tell them they can stay with you sometimes and other times they should stay elsewhere.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED
6/22- small spot liver again, ablation oct 2023


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