I know there is no answer but I just need to vent
Caregiver1963
Member Posts: 46
I am the caregiver for my husband who has brain cancer diagnosed almost a year ago. ever since his diagnosis he has been depressed and sees no point in living life. I work full time, have my own health issues , take care of my husband and get no support from my husband's family. His family thinks that they help by giving me advice about how the care of him and questioning the care I provide to him( I am a nurse my profession- nne of his family have any comporable experience). My husband told me today that he and his family aren't confident that I am ensuring he is getting the best care possible. They came to visit him today while I was at work and I came home to a kichen to clean up. I know that the best thing is to just ignore what they say and do but it is very difficult to do. Plus, my husband always comes to their defense. My husband has refused services that could make him more independant, such as physical therapy and occupational therapy.
His family supports his decision to refuse this care. They think I should be able to give him what the therpists could provide
It makes me angry as his refusal of these services makes more work for me. He spends all day in bed and will only eat if I bring him meals to the bedroom. Anything I do for him he complains about- I am too rough when I bath him, I don't wash him properly, I don't bring his meal/drink quick enough. When I respond that I am doing the best I can- he tells me that I can't accept criticism. His doctor knows about the current situation and has ordered that his decadron dose be increased- which only makes
my husbands mood worse towards me and he becomes irrational. I work as a nurse all day and I am sorry to say that I dread coming home from work. I am meeting with his social worker tomorrow to talk about all this- I am not optimitic about any resolution though- it seems like they don't want to do anything to disrupt the relationship they have with the patient
Mary
His family supports his decision to refuse this care. They think I should be able to give him what the therpists could provide
It makes me angry as his refusal of these services makes more work for me. He spends all day in bed and will only eat if I bring him meals to the bedroom. Anything I do for him he complains about- I am too rough when I bath him, I don't wash him properly, I don't bring his meal/drink quick enough. When I respond that I am doing the best I can- he tells me that I can't accept criticism. His doctor knows about the current situation and has ordered that his decadron dose be increased- which only makes
my husbands mood worse towards me and he becomes irrational. I work as a nurse all day and I am sorry to say that I dread coming home from work. I am meeting with his social worker tomorrow to talk about all this- I am not optimitic about any resolution though- it seems like they don't want to do anything to disrupt the relationship they have with the patient
Mary
0
Comments
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Vent away
Mary,
I so feel for you being a cregiver myself.....
I think it is time you tell his family that if they think you are not ensuring that he is getting the best possible care that they step in and help with the care. It is easy for people to sit back and be critics when they are not involved, but try to get them involved and watch them run. Refusing the care is down right selfish on his and their parts. You didn't mention if your husband is bed bound or not.
I wish you luck with your situation.
Hugs,
Sue0 -
Toughen Up...
Hi Mary, my name is Debra. There are so many things racing through my mind for you but my fingers can't go as fast as my thoughts. Most important first I am sorry you are going through this. But you need to toughen up a bit within yourself for yourself to survive this yourself. You have to keep telling yourself to remember you only need to know within yourself that you are doing the best that you can. In the end it will be you that has done everything and all you need is your own approval and satisfication. I hope that came out right.
As for other family and anyone else that is not helping, wether they have critisism or comments or nothing at all...you can only control you. Don't take on additional aggravation making yourself upset that OTHERS aren't living up to anything. I myself would say "Would you like to do that" or "go ahead you can do that" The ones not helping are the ones that will be saying... "I should have" or "I could have" and if you ever hear them say "I would have" simply say "Why didn't you, I didn't stop you"
Be proud of what you do accomplish! be greatful you have what energy you do have, even if its not as much as you would like.
As for your husband, have you tried to ever ask him...can you please do this for me. Or demand it be done if you feel it's in his best interest. At some point you need to make decisions instead of asking his opinion. It is not in anyway selfish but a true determination of you doing whats best for him. And making things easier on yourself is not selfish! Without you taking you into consideration...or without you where will he be?
I would like to tell you a bit about my situation. I am a 32 year old daddys girl. My father was diagnosed January 7th 2010 with stage 4 lung cancer. That is the advanced stages of a non operable terminal condition. Since then he has been in the hospital multiple times where i spend all of my waking time with him. He has had 2 surguries due to effects of chemo. And a long list of terrible side effects and limitations from illness.
I have taken on the role to be the top caregiver for him as far as keeping his schedules, meds, doctor correspondance, and so on over my mother and 2 sisters. all while trying to keep a job. i have no love, or social life at all because i choose to consider my father my one and only man for the rest of the time i have him.
I do not have children nor am i married and have recently moved back home. All of which depressed me and had me questionong my purpose in life has now come to light.
I have had 16 years of my own medical conditions myself which have actually made me a bit lazy. not to mention growing up in a house where my father did all the shopping, cooking, cleaning and organizing which I am the complete opposite of in all areas. However I was always the heart on the sleve, emotional and loving one of which is the opposite for my father. Today it seems that my father and I have evened out in each others roles. He is becoming everything I was as I am him. I am forced to take on household responsibilities that he can no longer do and in him watching my love and caring for him he has become so much more loving, sensitive and humble.
My mother and sisters have very minimial responsibilities, or knowledge for that matter. but i can never say anyone else...could have or should have because i wanted the control so i know i did the best i could.
I do tell my father he will do this or that...he has to do this or that and when he wants to argue about it..i explain why an ask him please to just do it for me. now he tells nurses he has to do things or his mother will yell at him " he is reffering to me" i dont care how he complains about it as long as he is doing what he needs to. and i dont care about how he wants to argue as long as we get it done.
Some of my mottos have become...
things could always be worse...although some days it feels like worse is catching up
i am not superwoman
i will get to it when i feel like it
today is a good day....don't ever forget to recognize when it is
i have gratitude
i'm not doing that
Guess I needed to vent too.
you are in my prayers as mine have recently become constant...praying for strength and energy, clarity and guidence.
Best of luck to us both!!0 -
Appreciation is empowering
Appreciation, supportive words, compassion and understanding are what we caregivers crave the most because it empowers us to be able to keep doing the enormously difficult job we have been thrown into.
Please find out if there are cancer support group meetings in your area. These groups will consist of survivors who know the important role caregivers played in their recovery. These groups will also have other caregivers (past and present) who will validate your feelings and your need to be heard.
Our oncologist calls caregivers - Nurses of Life
Truer words were never spoken.
AnnaLeigh0
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