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CARENOTES | Past Carenotes | Let's Talk

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 11/09/10

Hi,
 
Just found your site tonight.  My wonderful wife and I have had a very hard week and I decided to look for help.
 
We are both 57 years old and, up until last May, were in very good shape--working out at the gym, walks with our Lab, camping trips, hikes and such. I am a 23-year Army veteran (now a historical tour guide) and my wife was working as a legal assistant until she had to quit after her surgery for ovarian cancer.
 
She was diagnosed on 16 June this year with stage IV and had surgery eight days later. Her surgeon said the cancer had grown to the extent that and he had to remove about half of her colon and her spleen and do a complete hysterectomy. She now has a colostomy bag.  She has had six chemo treatments at 21 day intervals, the last on the 1st of November. In two weeks, we go back to see how the chemo has done. The side-effects have been getting much worse.
 
Her sister came to visit this last week from Vancouver, WA for the third time. She is wonderful and they are very close. She let me get some time away with a couple of my buddies, which I am finding I do need sometimes.
 
I found on your site what I hope will be a group for caregivers. I am a tough guy—ex-drill sergeant, battery commander, race car driver, but am finding this is the hardest thing I have ever done. Lately, I am finding tears running down my face way too often. Some guy in front of me on the road is five mph under the speed limit and I want to smash his face.  This is not like me; really it isn't. I am a peaceable man—love dogs, cats and people. Just feeling a bit LOST! Thanks for listening to my vent.
 
DD
 

 

 

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Name: Terri
Location: VA
Date: 11/11/2010
Time: 01:00 PM

Comments

DD - I am so sorry to hear of your situation. If you would like support as a spousal caregiver, please visit the Well Spouse Assn. at www.wellspouse.org, an invaluable resource!


Name: Sally
Location: PA
Date: 11/10/2010
Time: 09:30 AM

Comments

Normal, very very normal. Just get as much time off as you can and things will adjusted with time.


Name: Judy Krause
Location: Buffalo, NY
Date: 11/09/2010
Time: 07:07 PM

Comments

I am in the same place where once I also was the calm, fun-to-be-with, level-headed, easy going, peaceable person. I am caring for my Mom at my home. She is Parkinson's and Alzheimer's. I love her with all my heart, but I am falling apart as a person. Anger comes easy...without warning. I'm not violent, but I've become a quick trigger, and I hate it....to everyone. I plan to see my Doctor for a mild "Daughter's Little Helper"...trust me, I NEVER thought I would need something like that...........we need to take care of orselves, too. I haven't gone yet, and my Husband asked me again to promise him I'd make the appt soon....he doesn't want to lose me, either....I urge you to, as well...nothing to make you a zombie, but enough, besides prayer and love, that will keep us from hurting.


Name: jody
Location: danville, ca
Date: 11/09/2010
Time: 06:25 PM

Comments

Dear DD Sorry to hear about your wife's diagnosos with cancer. Sounds like you need a break from caregiving. Wherever you live try to find a homecare agency that could assist with caregiving. Even if it is for only a few hours. I work for such a agency and we are reasonably priced and do not require a minimum amount of hours. Hope you can find the assistance you need. Best regards.


Name: Diane
Location: Fredonia, NY
Date: 11/09/2010
Time: 01:41 PM

Comments

DD, that's not a vent. It's a true expression of how you are feeling and that is never wrong. How lucky that we have this wonderful site to express those feelings. You are feeling lost because you _are_ lost right now. So much has been taken away and it's scary, sad and disorienting. Your s-i-l is wonderful to come and help out so you can get away. Do that on a regular basis (or just get away for a few hours and do something for _you_) and you will come home refreshed and ready to continue the fight against your wife's illness. My husband and I have been fighting his ALS for four years so I know what you mean about reactions that aren't "like you". We had just retired, and had loads of plans when he was diagnosed so I understand your anger. Surround yourself with positive people, never give up and read all you can about caregiving. I cannot recommend too highly a book that I heard about on this site: Passages In Caregiving by Gail Sheehy. It's been very helpful to us and we've both learned a lot, especially about how to get the most out of your insurance coverage. Hang in there! Diane


Name: MJ Levan
Location: Ohio
Date: 11/09/2010
Time: 10:38 AM

Comments

Google "I Can Cope" which is a support group for cancer patients and their families. Hope this helps. God bless.


Name: Helen Tripp
Location: Smithfield, NC
Date: 11/09/2010
Time: 10:11 AM

Comments

Please know that you are not alone. The feelings you have are completely normal for someone who is dealing with and caring for a sick loved one. You cannot express your anger or emotion at your wife's situation to your wife because she is sick and you do not want to cause her any extra distress. You love her too much for that. But the emotions have to come out somehow, and so they surface in other situations over which you have no control....like the slow driver. I take care of my Mom. She is a lovely lady, but since her stroke in 2006, she is not the same person that raised me. This makes me very sad at times and very angry that she had to change so much. It's probably a little selfishness on my part too, because I would much rather have her former, engaging personality back instead of the person she now is...always compliant..misunderstanding conversations, etc. It is good that you were able to have some time out with the guys. Try to make it a regular habit as much as possible. It will help long-term with your sanity and energy level. If nothing else, just go outside and sit and meditate for a few minutes. Even the little breaks can help. You are in my thoughts and prayers! Hang in there!


Name: Gloria Johnson
Location: Bella Vista, AR
Date: 11/09/2010
Time: 09:31 AM

Comments

You are doing very well. My husband and I were wedding photographers before his sudden spinal cord injury occurred. I have gone through all of the feelings you have mentioned. You will get better as you take time to do for yourself. I felt I had to be by my husband's side 24/7. I found out the hard way that I had to take time for myself. Best wishes to you in your journey. GJ


Name: Marjorie L. Faes
Location:
Date: 11/09/2010
Time: 08:55 AM

Comments

Dear DD, First off, I am so sorry for your wife's recent diagnosis and surgery. You are to be commended for all your efforts in being your wife's caregiver. I felt so bad that you think there is something wrong with you. Rest assured, there in NOTHING wrong with you, you are simply in a severly stressful situation with no clear end in sight. I know because I have been there. Just remember to take one day at a time and don't focus on the future. Breathe deeply when panicky, pray, rest and gratefully acknowledge the help of friends and family, especially your sister in law. Hang in there and know that there will be brighter days ahead (they might just take awhile to come.) God Bless and remember to take care of yourself too (without any quilt) Marjorie L. Faes East Amherst, NY


Name: also DD
Location: Washington State
Date: 11/09/2010
Time: 08:50 AM

Comments

Your letter tugged at my heart. You need to find a Caregiver Support Group in your city. One where you can attend meetings and have a place to talk to real people. The tears and rage are happening because you are grieving. Caregiving is the hardest job anyone can ever have. You need to remember to find some time for yourself and do things to take care of yourself. My prayers are with you.


Name: Roxanna
Location: Champaign, IL
Date: 11/09/2010
Time: 07:03 AM

Comments

Your life has been turned upside down and you want to do what military training has taught you..get in there and change it. But what you need to do is find a local support group and be with others fighting the same battle. I wish you and your wife the very best. But you must take care of you to take care of her.


Name: Jeanie
Location: Tallahassee, FL
Date: 11/09/2010
Time: 06:37 AM

Comments

God bless you for being so open about what you are going through and your feelings. You are certainly doing the right thing by reaching out for help. I'm not real experienced in this area but I pray that several people who read your story will respond with encouraging words and advice. I pray that you and your wife will be blessed with a strong church family that can minister to you in many ways and that Jesus will bring you peace in the storm you are going through. God does care for you and your wife very much. Psalm 51:11 says "So the ransomed of the LORD will return and come with joyful shouting to Zion. Everlasting joy will be on their heads. They will obtain gladness and joy, and sorrow and sighing will flee away."


Name: Laura Lee
Location: Sacramento, CA
Date: 11/09/2010
Time: 06:20 AM

Comments

DD...as a fellow caregiver (my then 63 y/o Mom suffered a stroke 3 years ago which left her w/ rt side paralysis and aphashia...she's now 66 and I'm 45)...I read your note and just felt compelled to give you a virtual hug. That's all... Also, if you haven't heard about and if it should be of use, CaringBridge (www.caringbridge.com) may be helpful to you? We have used it as a 'tool' to keep others updated on our Mom's situation and condition through the years. I know find it useful just to journal/talk about Mom on her CaringBridge site. And always appreciates when someone leaves a note for Mom... Take care...of you too!


Name:
Location:
Date: 11/09/2010
Time: 06:13 AM

Comments

DD, your letter touched me so much because I understand how difficult it often is for men to express their frustrations and feelings of helplessness. Your willingness to admit that even a tough military man can't always handle what life throws at him is so refreshing, and is also the first step in helping you keep your health and sanity during this very difficult time with your wife, a woman you obviously love very much. I hope you continue to find the support you need, not only through this forum, but also within your own community of health care professionals, support groups, family and friends. Hang in there, take good care of yourself, and God bless you and your wife.


 







 

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