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Stressed out Caregiver

wifeofstubborn
Posts: 5
Joined: Feb 2011

I posted something last week and didn't get any discussion, but, My husband is a Cancer Survior (At least supposed to be) His last surgery was Sept. 20, 2010. He says he is tired and I know he is, but, I am too, and I cannot do his speech therapy exercises for him, or walk to gain strength for him. He says he is just tired! And I know he is, but We have an apointment with oncologists March 23rd to see about removal of Trach and feeding tube, and it is just like he doesn't care. I cannot get him to let me take him to ourfamily Dr. and I feel that all the congestion in his chest is something that needs to be looked into. The pathology reposrt Sept. 20 results showed all throat cancer gone.
Do, I just keep my mouth shut and continue to do what I can? Is this normal? I just need someone to tell me what my next step should be. He had throat cancer diagnosed in 2009, went thru readiation and chemo, and then either another tumor or one not gotten by the treatment. So, it has been a long and tiring time, but, do we just give up now? He is 76 years old and I think that he has gien up, or, maybe depressed, but, if I can't get him to a Dr., what do I do now. The oncologist is good, but very specialized and frankly, I don't think he can advise me on this.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

I can only imagine what you have been through in the last two years. I have been helping my mother since Feb 09, and like your husband, she no longer has the energy to fight. At the risk of sounding too honest, if my mother had a feeding tube and trach, we would also have the maximum hospice services we could get. Things to seem to have moved rather far along from the sound of things, and your husband may know what he wants.

When you've fought so so hard and done everything you've been asked to do for two years, including surgeries and heinous drug regimens, it is not giving in to change your direction toward resting and allowing death to come. At our house we call it God's big invitation. We talk about it, because it is a very honorable invitation to accept.

The end of life may take months, weeks or days, but it is important time for you, your husband and your family. Why spend precious energy running around to doctors at this point? I hope you and your husband, and perhaps other close family members, can find a way to discuss this. Good luck. I know you're exhausted.

wifeofstubborn
Posts: 5
Joined: Feb 2011

Thank you, Barbara 53. He is supposed to be cancer free according to the pathology report after the last surgery. He has so much congestion, I feel that he is just not well and it isn't just the results of the throat cancer surgery. He still has a speech therapist 2 times a week and Home care nurse. The nurse asked me one day if I thought he isn't well, that there is still something there, and I do. I have made up my mind to not push if something is wrong and he is just too tired to fight it. There is quality and quanity of life and I agree quality is best. We go back to the oncologist March 23rd but in the meantime we are to have another ct scan. Thank you! I am not going to push him to see our family Dr. I will just do what I can for him at this point. I will take care of him the best I can and leave the rest up to God. I have tried that so many times and keep taking it back. haha!
I will add you and your Mom to my Prayerlist.

sue5749
Posts: 170
Joined: Dec 2010

My husband is going through the same thing has alot of mucus also. It is so hard seeing him not being able to eat or drink anything! I just hate it. All I know is that it is so hard to watch someone that you care about and have been with for over 25 years suffer!! Don't know where I am going to get my strenght to help him! He has a peg tube, tracke and port in. He stopped breathing on the operating table when they put the port in that is why he has the tracke. Had to take him to emerging room twice yesterday because the tracke came out.

neverquit
Posts: 221
Joined: Oct 2010

Ask your Oncologist about using Mucinex for the mucus if you have not tried that yet. My husband's Oncologist recommended this for my husband due to severe mucus from his chemo.. He had to take it every 6 hours but it was like night and day. I am not sure how this would work with the peg tube, but felt compelled to mention it.

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

I see a lot of similarities between your husband and mine. He also had throat cancer...dx first time in 2007 and struggled through radiation/chemo. May of 2010 it returned. This time the fight was harder and he seemed to be defeated from the beginning. He went through treatments again and also surgery that removed his entire larynx (voice box). This supposedly removed all the cancer. But he continued to feel bad and kept telling me that something was still in there. I told him of course it wasn't because the ENT said that all cancer was removed. I thought his attitude was because of depression and was constantly trying to get him to talk to someone or take medication. Long story, short...he apparently knew what he was talking about. Later scans showed more cancer on tongue and throat and mets to one lung. He passed away 6 weeks ago.

Perhaps you can get more info after the scans. Let the docs know your concerns and how he is acting. If your husband will discuss it, you might want to pose the hypothetical question of "what if the scans show more cancer?". Ask does he still want to fight it or try to maintain some quality of life for the time he has left. Only he can make that call.
Let us know later what the tests reveal.
Debbie

mhrosado
Posts: 37
Joined: Jan 2011

I just want to let you know that I will pray for you and your husband. I hope that you are looking at what you titled your comment "stressed out caregiver" and that hopefully a family member or friend can help you get a little relaxation. I have had to learn to ask for help and when help comes it feels so good. I think that what you said that you will do what you can and let God take care of the rest is very wise.
Let your family or friend give you a little break.
take care

nothing else matters
Posts: 4
Joined: Mar 2011

Your expierence is a mirror of mine. My husband has throat cancer. He does have a trach and feeding tube. Our journey started in Jan., 2011. I work full time and also a part time job. I also am the only caregiver. My husband takes no responsibility for his recovery. I do everythinbg for him. There are times I wish death would come but, not for him, for me. It seems that is the only way I can get any rest. I have even named it I call it Death by Husbands Cancer. I live in the bedroom because I can't handle the smell, the constant cough and the horrible spitting. I never eat at home because I don't want to upset him with the smell of food. You would think I would of lost weight but, gummy bears have a lot of fat. On the occassion that I sit with him to watch tv He coughs so much that I can't hear anything. I have had to become very hard so I can do everything that is required of me. All of the suctioning and clean up makes me gag so I can't look when I do it. He cries all the time. His son calls once in a while and never comes to see him (3 visits since January. When friends call or write he cries. No one wants to see him anymore because of the tears, spitting and hacking. THEN the guilt hits because I feel the way I do sometimes. I wish I could go poof and be gone from this world. Thanks for reading my rant and rave. It felt good to voice what I can't say to anyone.

DrMary's picture
DrMary
Posts: 526
Joined: Nov 2010

for both of you. If your journey started only 2 months ago, you are smack dab in the heart of darkness right now. It's very hard to see the end of the journey and it seems endless. It's not, but you both need help to get through - you are both obviously depressed, and with really, really good reason.

Please, talk to his doctor about antidepressants for him. In addition to the pain and gross living conditions he is experiencing, the surgery and upset to the system can also cause mood swings and depression - his doctor should be familiar with this. See if he will also prescribe for you or recommend you on an emergency basis to a psychiatrist who can help. Do not wait for things to get worse (my lowest moment was when my favorite knife spoke to me, offering me a way out - it shocked me into taking better care of myself, but it could very well have gone the other way).

And keeps some Vick's around for when you really can't stand the smell - I used it for about 3 days, after having to deal "hands on" (pun intended) with his almost terminal constipation, as I just couldn't get the smell out of my nose. It helps - medical examiners use it to get through autopsies of decomposed bodies.

Lastly, about those friends. I'm really sorry the visits are tough on them, but that's life. You need the break more than they do - call them up and tell them they are scheduled to come over for 3 hours this Saturday (or another time that works for you) to watch TV with him while you go swimming or get your hair done, or have a nice lunch somewhere. Offer them the Vick's and some ear plugs. They owe you.

nothing else matters
Posts: 4
Joined: Mar 2011

I have been on antidepressants since 1994. 100mg of Zoloft and my husband is on 150mg of the same. I made sure he started on them when he came home from the hospital. His Doc. will not increase the dose and wants him to see a mental health professional. He is having trouble accepting the help. I do know the vicks trick but forgot about it. Thank you for the reminder. It made me laugh about getting my hair done thouugh, I am a cosmotology instructor and work pt. time in a salon. Trust me getting my hair done is not a relaxing expierence for me but I do know what you meant.

Looking back at my life I realize I have been a care giver my entire life. My father was an alcoholic and he was blind. As an only child my mother decided I should be the one to take care of him. She live on Mars and I also took care of her when dementia hit. She is in a nursing home and is 91. I do not exist on her planet. Then my children came along. My daughter is a 5 year recovering addict. Just for the record my husband is a 21 year recovering alcoholic. We will be married 5 years in May. I tell you this because it seems to be my destiny to take care of other people and the weight is heavy.

thanks for the response. Your advise is very much appreciated

elmdallastx
Posts: 6
Joined: Apr 2011

Take a moment to clear your head and think of happy memories. It's hard to do but think of something that happened that was really positive and funny.

It can really difficult to lift your mood but the other day I was driving and thought of something really funny and it really changed my mood for an hour.

You are his advocate and saying nothing can turn into something terrible - like guilt or emotional baggage. You have gotten this far.

Maybe he needs a little push and you may not have it in you but we believe in you and know you are a fighter as well.

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