Husbands family are driving us nuts - any suggestions

jennysking

My husband Larry (just turned 50) was diagnosed with EC last month and has now started a 9 week chemo regime of ECX prior to surgury planned for July. The chemo has hit him like a train - neither of us were prepared for the level of fatigue or the fuzzy thinking that he's going through (will this get any better or should we just accept that this is how it's going to be?).

We are both young, fit and very, very determined to beat this thing, however, my husbands family are adding to the overwhelming presure that we already feel. They want to pop over all the time, they don't take no for an answer and get very upset if we suggest that maybe another day would be better. They seem to take it personally - and don't realise just how drained he is. His parents are in their 80's and have taken the news very badly. The have no internet access and so their knowledge of EC is limited. I want to look after Larry and do what's best for him so I tend to be fairly curt with my inlaws. They say they want to help but they don't want to listen and so just seem to be making things more stressful. Any advice on dealing with this situation?
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Jenny

anewdawn · Regular Joined: 29 Jan 2006 Posts: 30

Dear Jenny,

I am sorry to hear that your husband is sick. I am a 45 year old stage III survivor of Esophageal Cancer and have been cancer free for almost two years. I had radiation/chemotherapy and then surgery with more chemo after. The chemotherapy kicked my butt and I was very sick. I lost 50 pounds, could not swallow water and lost all of my hair. I moved in with my mother so that she could care for me and slept in her livingroom in a hospital bed. Friends and family came to visit daily. There were days when I was so sick and tired I just wanted to be left alone. But my family/friends were concerned for me and they expressed their concerns by visiting, bringing food, and stuffed animals/cards. At the time, I did not feel like company and wished they would stay home. But now in hindsight, I am glad they were there. They wanted to spend time with me in case something happened and many happy memories were created during that time. I kept a journal of visitors and when I was feeling well my family planned events (things I always wanted to do and never had the time) I will never forget. I know you feel your in-laws are intruding on your husbands rest, which he definetly needs. So here are my suggestions.

1. If your in-laws do not understand Esophageal Cancer, educate them. Print off things from the internet or purchase books they can read and understand.

2. Set up a schedule for visitors. Just like a hospital, set up a time when your husband feels his best.

3. Limit the time that visitors can stay. If your husband can only tolerate 15 minutes than tell them ahead of time they can only stay 15 minutes.

4. If you must run errands or cannot be a home, ask your in-laws to come to the house and stay with him while you are away. As a caregiver, you need time to yourself even if it is to go for a walk.

5. Encourage your in-laws to share happy memories and family times. If your husband does not feel like talking, encourage him to just listen.

6. Tell all visitors ahead of time that your husband may fall asleep during their visit. Tell your husband, that it is okay to fall asleep if visitors are there he does not have to entertain.

7. Post a note on the door, No negative comments, No sad stories, No crying. Positive thoughts and prayers only.

8. Make sure that you enforce the rules. No exceptions. Make it clear that if the rules are broken, they will be asked to leave.

9. Explain your husbands condition with everyone before they visit. Encourage people to ask questions. Tell your family and friends to share the information with everyone they know. This cancer is so horrible/deadly because it is usually not diagnosed until it has spread making recovery slim. Currently this is the fastest growing cancer and no one has ever heard of it until it effects them personally. Getting the message out to others may save someone from going down the same road as we have.

As far as the chemotherapy. I still have chemo brain fog. I forget things easily, have low endurance and have extreme fatique at times. I do not know if they will ever go away. But I make the best of it. I am just so glad to be alive that I will take what I can get. Your husband will always have good and bad days. You learn to take advantage of the good days and to take it easy on the bad.

What type of surgery will they be performing? If you have any questions about the surgery, I will be glad to speak with you about them. I had the IVOR-LEWIS Esophagectomy. The surgery lasted over 10 hours.

I hope that my advice helps you. If there is anything thing else you would like to discuss, this is a very good group to post a message and receive help.

Good luck to you and your husband. May God Bless you both during this very difficult ride you are on.

Dawn

mousa

Dear Jenny,

You have got a very good reply from Dawn. There's only one thing I would like to say and that is to be gentle with your husband's family, especially his Mum and Dad who are in their 80s. They are greatly distressed. His mum carried him next to her heart, they both brought him up having a huge influence on the man he is.

When my husband was ill his brother and sister and spouses came and stayed for 2 weeks and 10 days in our tiny 3 room condo. It wasn’t easy but now I am so glad that I welcomed them and did the best I could in difficult circumstances

And crying? Crying is such a natural expression of our feelings that I wouldn't like to say no to it. Your husband understands that he is very sick and that family must be concerned and upset.

Re chemo brain fog: My husband was diagnosed in July 2004, underwent 10 heavy chemotherapies and is still on Xeloda. He is back at work and is presently writing a very complex report requiring data from many sources. No brain fog!

We are all so different. You may find, as my husband did, that each chemo will throw up different side effects. We learned to never know what to expect.

But with the support and prayers of family, friends, colleagues, all the hospital staff, and often complete strangers. my husband came through it and is a better person in many ways, as I hope I am too.

Love, Val.

mousa

Dear Jenny,

Just one more thing: My husband cried during his illness and I encouraged it. Now he often sheds tears for the misery to be seen on TV and read in the newspapers, and for friends going through bad times.

Love,

Val

anewdawn · Regular Joined: 29 Jan 2006 Posts: 30

Val,

I agree with everything you said. I believe in letting the person who is sick cry and let their emotions out. I cried daily. What I was trying to say, is her husband is feeling good and cheery, to not have everyone coming in crying and upseting him. I also agree that you should be nice with visitors, but firm. Not all people understand how devastating cancer and chemo treatments can be. The only way they are going to understand is if someone explains everything to them and then asks them to adhere to the rules. This allows her husband to visit, yet the required sleep and peace and quiet that he needs right now. And lastly, I also believe that Cancer can make you a better person and Val you are truly special.

mousa

Dear Dawn,

I agree with you that seeing visitors can be a problem. Many times I told friends that my husband was just not up to seeing anyone. If he was up to seeing a visitor I would put a time limit on the visit. I would tell callers what the current situation was, usually out of earshot of my husband - that is whenever the situation was not too pleasant. If he was up and about then no problem - it was great to share the joy of feeling better. It was weeks before my husband would speak with family and friends on the phone. I had to push and push to finally get him to do so.

But I feel that Mum's & Dad's visits are different. And I would think that being in their 80s they already have a good understanding of the pain and heartache of illness and have already lost family and friends. Now a son is very sick.
I agree that Jenny should monitor/curtail even their visits, but gently.

I'm sorry, Jenny. Dawn and I perhaps seem to be talking over your head.
Dawn has the experience of being a patient and I of being a carer. We fought and came through it.We both feel so much for you and your husband.

And as Dawn mentioned, you must take time out for yourself. My time out was always when I had got husband settled for the night. Then I would take an hour to read a book, do a crossword, or whatever, with a nice cup of tea. When he was in hospital I could often take an hour to go to a department store. Just to be among bright, new clothes and healthy people was a tonic for me. In Asia we are lucky that relatives can be accomodated in the same room as the patient so I was with him day and night.

I hope that we have been of some help to you. If there is ever anything you think I can help with, please ask.

Lots of love to you and Larry.

TheGoat · Regular Joined: 01 Apr 2006 Posts: 10 Location: London, UK

Hi, I'm Larry (hubby to Jenny), Just wanted to thank you all for helping us. It's been a tough week. I've never experienced the type of feelings that the first week of chemo have exposed me to. Doubly difficult because I'm considered a master of coping with extemes Smile

By thursday I was really ground down. Then last night Jenny did a briefing with the family based on your inputs. I think it went really well. SO THANK YOU ALL. I'll be back with lots more questions soon especially about the surgery which is currently penciled for July.

Larry

mousa

Dear Larry,

Thank you so much for your post. I appreciate it. Keep in touch with any questions. Dawn will be there for you too and for the operation. She comes across as a really nice lady. I think that I already wrote that I believe that the mind and the soul have to be involved in the fight to regain health. So think about that and what is right for you.
Lots of love to you and Jenny

Val

joy13 · Posted: Mon Apr 10, 2006 7:53 pm Post subject: visitors

My husband was diagnosed with IV esophagus, mets to liver in October. He underwent harsh chemo treatments. Esophagus cancer in itself is ugly. Both the disease and the chemo caused severe nause and vomiting. He couldn't take opiate based pain killers so he was in constant, intense pain. These all take a toll on the body as well as the mental state.
My husband did not want visitors at all. He too was very fuzzy in his thinking much of the time but before he began chemo, we discussed having visitors. He did not want others to remember him sick. He wanted them to remember him as being happy, health and making them laugh, not cry.
I tried to follow his wishes. I would always ask him what he wanted. Only a few times I talked with my husband and convinced him to see family. His mother never left feeling better after seeing her son so sick. She is in her early 80s and was actually more distressed after seeing him.
My husband was so much more able to deal with his illness when we were alone. Visitors, even loved ones are taxing. While I did communicate to his family the situation, I stayed committed to allowing him his privacy and keeping him as stress free as possible. I always called and talked to them to let them know how he was doing. To me, it was more important to follow the wishes of my husband than to attempt to help others feel better. It sounds harsh, but I am glad I did everything I could to help him and to allow him some dignity in his wishes to not have others see him so sick and weak. Sadly my wonderful, loving husband passed away March 15. His cancer was far too advanced to be successfully treated. He will be remembered for the joy and happiness he always brought to others.
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Scared Spouse

jennysking

Dear Joy

So sorry to hear of your loss - stay strong, you have so many good memories to be thankful for.

Thank you so much for your words of advice and support - We have found some sort of balance with the family although it's been difficult and I've had to be firm. We have drawn a little from everyones suggestions so hopefully his parents will understand better how he feels as time goes by

Our thoughts are with you.

Jenny & Larry
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Jenny

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