Why Am I Feeling This Way?

[Salley]

Hello All,

We found out my husband had stomach cancer in October 2009 and he enrolled in Hospice in November 2009. He chose no treatmants, preferring to live without chemo, surgeries, and radiation for the rest of his short life. Well, here it is 18 months later and he is stil able to get up in the mornings and get some work done around the farm. Over the past 18 months we have hosted many friends and family. About last october 2010 I really started to be bothered by the amount of traffic through the house and by Jan.2011, I made some declarations; no visitors except family and invited friends (see how the no visitors rule didn't last even one minute?) no wisdom/lecturing. My husband is a type a obsessive/compulsive worker who feels it is his duty to teach all within ear reach his way of doing things. Since I have heard his lectures for 37 years, and he was getting to be repetitive, I asked for a halt in his lectures, and he has mostly complied. But what still mostly bothers me is the visitors. When he says "Do you mind if I invite" I get a bad feeling in my stomach and want to say NO, I do mind. But he is close to dying and I can't deny him his friends. A compromise that has worked the past several months was he went to his friends houses for visits. I am trying to understand why I have such a strong negative reaction when people try to come over for a visit. Part of it must be I feel they are intruding on my time. I am busy watching after my husband and don't want any one else to have to watch after. We have one couple that has visited every other week, coming for dinner and cards, and I have no problem with them. Why do I want to punch in the face some of the friends who try to come around on a regular basis? Is this normal to feel angry feelings when people think they can just pop in with a days notice? How can I get over this anger, if that is what it is? It may be anxiety, and if so, I need to take my anxiety meds! I don't know if I explained my self well. I have gone through so much since Oct. 2009.

[Nick]

Hi Salley,

I'm sorry your dear husband is so sick I don't think it's strange that your angry maybe you feel he should be spending most of his time with you since he is so sick! Sounds to me like you love your husband deeply and just want to spend as much time with his as possible. Have you spoken to him about this at all? Maybe your not feeling valued or as important as all of the other visitors? You love your husband what is wrong with that?

[west]

maybe you are just exhuasted. have people offered to bring a meal or give you a moment for yourself?

maybe you are jealous of them...I was and still am that people did not have to live through this horror of

cancer and then loose their spouse. too many options...maybe talking to a therapist may help. I am understanding

your anger!

[MartyT]

Salley, dear, I'm so sorry to learn the details of your story. Clearly you're doing as much as is humanly possible to take good care of your husband, and I simply cannot imagine how overwhelmed and exhausted you must feel. For what it's worth, I would come unglued, too, if I were in your shoes and "people just popped in with a day's notice." I think West's suggestion that you talk with a therapist about this situation is a good one ~ Since your husband is on a hospice service, I assume the team assigned to him includes a a nurse case manager, a social worker and a clergy person ~ Is any one of these a person with whom you'd feel comfortable discussing this situation? Maybe they can help you come up with a plan that will meet your husband's needs for continued socializing, while at the same time offering you some respite and some feeling of control over how you're managing his care while still running and keeping up your home. This seems like way too much for you to be managing alone, without some objective, outside perspective. I doubt if you'll find time to do so, but if you're interested (or if you can find someone to do this on your behalf) you'll find some very helpful ideas and resources listed on the Caregiving page of my Grief Healing Web site . . .

[Salley]

Hi Salley,

I'm sorry your dear husband is so sick I don't think it's strange that your angry maybe you feel he should be spending most of his time with you since he is so sick! Sounds to me like you love your husband deeply and just want to spend as much time with his as possible. Have you spoken to him about this at all? Maybe your not feeling valued or as important as all of the other visitors? You love your husband what is wrong with that?

Hi Nick,

Yes, we talked again last night about this issue. Of course all his friends are male who are coming around, and high maintenance at that. I refer to one as "Pig Pen" after the Peanuts character. All I want to do is take care of my husband without feeding and cleaning up after a bunch of untidy folks. I suppose it does not help that I don't care for the most frequent visitor.

Thank you for your comments.

[Salley]

maybe you are just exhuasted. have people offered to bring a meal or give you a moment for yourself?

maybe you are jealous of them...I was and still am that people did not have to live through this horror of

cancer and then loose their spouse. too many options...maybe talking to a therapist may help. I am understanding

your anger!

Hi West,

Thank you for your helpful efforts for me to see what is happening to me. I have asked some friends to bring their own food and that has worked out well. But it is Rich's male friends that I don't speak with before they arrive who always come hungry and empty handed. Yes, I am exhausted. And I feel we are entering the final stages of Rich's life. His weight is 103 pounds and he eats very little food, so his weight will continue to drop. He also won't take his morphine so I am in great distress watching him in so much pain. If we only have a few weeks left, I feel I just want to be left alone with him.

[Salley]

Hi Marty,

In December I thought I was having a nervous breakdown so Rich and I went to our old marriage counselor. He said I needed a grief counselor, but he did not know of any in the area. So I went online and found a psychologist who specializes in grief that was 2 1/2 hours away at $125/hr. I also found two Hospice social workers (for free)that I did see once each. They both told me I had anticipatory grief. One was 2 hours away and the one I really liked was 45 minutes away. I live in the boonies! Neither of those two Hospice Social Workers are with my Hospice and saw me on an "emergency basis". I don't know if I can bo back to them. Our Hospice is small and we do have excellent RN's, but the social worker is 19 and still lives at home. She quit coming over a year ago and I am not sure I want her to come back. The last time she was here, she said she always learned so much when coming here! Hmmm, what's wrong with this picture?

My husband and I did talk last night and he has a better understanding of my feelings. His condition is getting worse and after 18 months of watching him dying, it is intensifying.

Wow, I did look at your website, it is quite extensive. I will spend more time there.

I really appreciate you all responding to my issues and hope you can point out some more things I could do or not do.

[Salley]

Thought I would do an update. Rich has decided that it is time for him to stop eating. For the past two days, he has requested some ice cream twice. He longs for food, but has not had an appetite for almost two years. He has forced himself to eat, and he has decided to no longer do that. Eating has been his greatest discomfort, with stomach cancer. He feels better without all the pain and discomfort he would get with eating.

We have invited a bunch of people over! Funny how things change so quickly. I am relaxed about the upcoming foot traffic. I will accommodate anyone Rich wants to invite over.

[MartyT]

Oh Salley, my heart goes out to you as you read these signals and continue to cope with your husband's "doing it his way." I wish we could all be there with you in person to wrap our arms around you (or roll up our sleeves and help you with the chores of care giving).

I don't know if it would help, but there are some very informative articles about the dying process in general, and particularly the loss of appetite as the individual draws closer to the end of life. You'll find some of them here:

Where Did Your Appetite Go?

Artificial Nutrition and Hydration at the End of Life

I hope it helps somewhat to know that our thoughts and prayers are with you as you find your way through all of this . . .

[BellaRosa]

Salley, I'm so sorry to hear about your husband and everything the two of you are going through.

Since you're out "in the boonies" and far away from hospice, have you considered an online support group? I found a great one at cancercare.org. Once you apply and are accepted, you have access to a private board run by an oncology social worker. They also offer phone counseling sessions, and online counseling sessions -- all for free. It has all been very helpful for me, and I hope that maybe it can be for you, too.

[Salley]

Hi BellaRosa,

Yes, I am currently enrolled in CancerCare's General Caregivers/Loved Ones forum. It runs from Feb.1 to May 15. I thought is seemed like a great idea, but my group is rather silent. I thought the participants would chat among ourselves, but after the first two weeks, that stopped. The moderator poses a weekly idea, and 80% of the time I am the only one who responds. How did your group work? I had forgotten all the services the CancerCare offers, thanks for reminding me. I still want to sign up for the next session, be it the caregivers, or grieving forum. It is a wonderful service and i really like the idea that it is truely private.