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guilt

StrLitNite's picture
StrLitNite
Posts: 3
Joined: Nov 2008

My husband was diagnosed w/ matasticised nsclc "adenocarcinoma w/ 3 brain mets" july 30 2008. he did 14 rounds of radiation and is just finishing up his 12th day of chemo, cisplatin / navelbine. I work fulltime, take care of our 2 children and tend to him and dr. appts and the house and all that goes with that. He is pushing through right now. At our last dr. visit he did mention giving up chemo for he was so tired of the side effects and it knocking him down for days on end. Dr told him ok if you wish to give up chemo it is your choice but we will need to call in hospice, he heard that and chose to continue with the chemo. He still is able to do some himself, he tries to help out around the house as much as he can. I do not ask for help at all I will let him do what he thinks he can do safely. He has had some memory loss not sure if it was the radiation, the chemo or just the brain mets themselves so he is watch closely doing things just in case he forgets. I call him 4 times a day from work just to remind him to take his medication and once just to chat over "lunch". He has been out of work since August 1 2008 and just roams around the house from boredom. I have tried to find things that might help keep him moving, whether it be models or something but he just says he doesn't want anything to do, but he pretty much stays in the house and chooses not to go anywhere but the dr's. My big thing is the guilt. I know as a caregiver and really in a sense only being mid way there for like i said he can still do a pretty good deal himself. I feel guilty if I go to a relatives house and he doesn't want to go, he is never home alone there is always someone here if I decide to go out for a cup of coffee, but when I do I sit there thinking I need to get home. We have a Christmas party coming up at work and some of the staff ask if I was attending and I decided not to go. I know he would have company here at the house, our daughter and him love to hang out and watch t.v., but I can't force myself to go. I know he can't go this year, he tires to easily and he doesn't like the cold, so he had no intentions on going but said for me to go. I have been told I need to take time for myself but how? I go out maybe once a month that doesn't consist of grocery stores, doctors or work to sit with a relative 4 blocks from my home long enough to choke down a cup of coffee then rush home for I feel guilty leaving. Is this normal? Should I be home all the time? I finally went and had my hair done after months of holding off and I just told my hair dresser to make it quick but even. Any suggestions would be helpful.

arbrab's picture
arbrab
Posts: 55
Joined: Nov 2007

strlitnite,
There is no reason for you to feel guilty. Caregivers need time for themselves also. I lost my husband in 07 and took care of him by myself for 2 1/2 years. I never asked anyone for help and it wore me down more than I care to remember. If your daughter is there with him, then he is not alone. But, you still need to take time for you. There will come a time during this that you will not have time to even go down the street for a cup of coffee. So, please do not feel guilty for taking time out just for you. You need time to think about each and every day. You already call him from work to make sure he is doing everything he needs to do. So even at work you are his caregiver. Give yourself a break, go to the Christmas Party. Relax. He gave his permission (doesn't like the cold). I truely wish I would have had some time to do anything for me, but everyone disappeared when my husband got sick. My daughter in laws and sons were the only ones that were there for me. They went to the store for me, but in the long run the caregiving was up to me. Please do not feel guilty. There's time enough for that later on.
Take Care Of Yourself. And be thankful your daughter is there to be with him.
Hugs to You and Yours
Barbra

StrLitNite's picture
StrLitNite
Posts: 3
Joined: Nov 2008

Thank you all for your input. I had thought of it that way also arbrab, do it now while I can and technically he really isn't alone between our daughter and our son, they are usually home and they aren't actually small children, 14 and 16 yrs old. so I know he is in good hands with them. Again thank you all for some input, I just knew there were others out there that have felt and have dealt with this and it's great to have some input from people who know exactly what you're talking about.

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

It is normal to feel guilty but try not to let that get to you. My mom died from cancer in August of 08 she was diagnosed in feb 07 she lived by herself 20 minutes away. She did radiation and then major surgery and three months later cancer came back nothing more to do except chemo did 8 treatmnets chemo wasnt working she gave up in May. So from June on i had to travel everyday to her home to be with her so she wasnt alone as she got worse each day, she had some good days some bad days, I had a hubby and 4 kids at home but i would sit their for 10-12 hours and wait for someone to come relieve me but be back at it again the next day. IT was hard for me to do something for myself but their were days when i had to go shopping for my family or take a day off to get caught up with my own house work plus i worked nights , so those days when i had to do for myself or my family I FELT SO GUILTY but in the end i NEW that i had done evrything that i could possibly do for her, she was not sad or mad, and she enjoyed the time we spent and had together she was glad i spent all that time with her but still had time to myself(she didnt want me to "spoil" her she used to say, she would tell me several times to go, go, go BUT i just couldnt bring myself to do it but in the end when it got close i new i had to .. I had to take breathers or i was gonna crack, I had to go get that coffee or lunch with a friend, or just take day off to clean house, just so she new that I could be strong plus she liked the breather also becaue she didnt like me to see her sad so when i would go that was her time to relieve maybe some tears of her own or do a little something by herself, so think of it that way also if you can leave even 1x week for even 20 minutes or 1 hour whatever it may be think of it as time for yourself but also time for your husband to grieve himself and also he will feel better knowing that you are still "living" and enjoying yourself even though he is sick deep down he would want you to be able to do what you want just like before he doesnt want his illness to consume your life also.
Take care best wishes

zahalene's picture
zahalene
Posts: 680
Joined: Nov 2005

During the last two years of my mother's battle I lived next door to her and Dad and was their only day-to-day care giver. What I found was that sticking too close to Mom made her more helpless than she really needed to be. It was actually good for me to step away for a few hours a couple of times a week and give her reason to do as much for herself as she was able to do. Otherwise she depended on me too much and just sat down and said, 'here I am, do it for me'.
My dad was there to look after her and get help if it was needed so she was in no more danger with me gone for short times than she was with me there constantly. You might want to give your hubby some 'space' to stretch and challenge himself a bit. I think that is good for anyone, but especially when our lives become narrowed by the limitations of illness.
God bless.

birdneese
Posts: 3
Joined: Oct 2008

After reading the above posting, I feel that I am not loosing my mind. My mom was recently DX with MM this past May 2008. My dad and I are her primary caregivers. My husband and I live next door to them. I have been through the chemo, the ER vists, the hospital stays, the endless phone calls and questions. Taken time off work to go to DR visits 2 hrs away to have a second set of ears listen in on visits. Running errands, making up folders of each week for my dad for my moms visits if I couldn't get off work to go. Each week dad had a different folder, of current meds lists for mom (and one for him too, for just incase something happened to him) a map of appts that were to be done, test locations with a color scheme to have dad follow for easier reading for hiim. A list of contact numbers for him, plus I programmed them into his cell phone. A list of Drs that he could contact in particluar parts of the hosptial. My mom will be heading to University of MI for her Bone Marrow Transplant on December 4th. She will be down there for 3 weeks or plus...just depends upon how it goes. She will be receiving her own stem cells. She was able to donate to herself. My mom too had just given up on everything and I found myself plus my dad doing everything for her. She wouldn't even go to the dinner table to eat, she wanted everyone to bring things to her. She does have neuropathy in her legs now from chemo side effects, but I finally had to talk to her and say....this is your fight mom, we need you to fight to win. Dad and I are along for the ride to help you. I started giving her small things that I knew she could for me while I was at work. I wanted her to be involved in this fight. She was just like going through the motions. We had to have her depression meds increased, but it is hard. I had to get a counsler to help her, cause I was too close to her and was worn out emotionally and physcially. I could see the toll being taken on my dad too. Plus he isn't in the greatest of health either. He has stuck by her thou, more than I ever thought. Doing all of the house work, cleaning, cooking, grocery shopping, etc. I pick up everythign else for them, meds, cleaning, ordering meds, dr visits, calling people, and I will be staying with her throughout the thanksgiving holiday so my dad can get a break and do some deer hunting. My mom can't be left alone, due to the pain meds, vertigo, and she has two different types of ports in her chest. I have been reading some books to see if they will help me understand and cope with being a caregiver. In December will be a very difficult time, they only gave my mom 3 out of 20 that she will survive the transplant. I do have a brother, but he lives 10 hrs away and is no help to me or my father. Unlike your husband, my mom isn't able to leave the hosue right now, she hasnt' been around anyone except the viist to the dr office (with a mask on) and only been around my dad and myself. This has been going on since November 2nd. She coudn't be around anyone due to viruses, colds, etc. Her counts are good right now. She does talk to her friends often on the phone, but she is in constant pain in her legs and back due to the chemo made her bones weak and she has two new fractures(which can't be surgically fixed) So she is on a lot of pain meds and meds for her neuropathy. We have had to take in my parent dog also until at least March 09. Apparently the Dr's say that my mom can't be around the dogs saliva...due to viruses it carrys. So the dog has been here for almost 2 months...and he is BIG dog..all 130 pounds of him. He is good, just trying to get him to get along with a bird and a cat has been a new experience.

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