Advice For Mothers Caregiver

My wife and I are my moms primary caregivers, I have an older sister (47) who constantly makes excuses for not coming over to my house to help out or to keep mom company so that my wife and I can spend some time away from the front lines. We get very frustrated with her and I have had several conversations with her about the importance of her spending what little time is left with her and also how it would help us out. My mom also makes excuses for her and does not think it is a problem.

My mom was diagnosed with colon cancer in Feb.2005 when they removed a tumor from the colon. She went through 6 months of chemo only to have a large tumor grow on her ovary, which was removed in Dec.2005. At that time the surgeon had told us that the she is now in stage iv and that the cancer had spread to her aorta and pelvic areas and that she had a 15% chance to live a year longer.

My father passed away in early Feb.2006 of a heart attack, one month later my mom was admitted to the hospital for shortness of breath. The lung Dr. is currently treating her for an advanced stage of fibrosis and the oncologist has stopped all treatments and had suggested that we get her involved with hospice which we did 2 weeks ago.

I know that I am rambling on with no rhyme or reason but at this point I am very confused, I feel isolated from the world, no one can tell me what to expect in the days and weeks ahead.

Can anyone relate to what I am going through or offer some advice or encouragement.

What ever response I get will be appreciated.

Dear John B.,
Please accept my condolences on the loss of your father. I am not a professional but can only speak from experience with my husband who passed away this past Feb. from bile duct cancer. He was enrolled in Hospice 6 months before his passing. Each family member responds differently to each illness and/or loss. It's possible your sister is still grieving from the loss of your father and cannot deal with another possible loss she might face. She needs to walk in your shoes just once to maybe understand how important it is to have her help. The Hospice family can provide volunteers to come and stay with your Mom just to give you and your wife some respite care, (if your Mom will allow.) If you just need someone to answer your questions as to what to expect, the oncologist or your Hospice family should be there for you. You must tell someone in Hospice how you feel and what you are experiencing at home. You may feel like no one understands and you feel isolated, but sometimes you have to try a few times to let someone know what is going on with things at home. I will pray to God for Him to give you strength and patience during this very very painful time. He is the most powerful physician.

Hello,
I can completely understand your frustration with your sister. My Mother was diagnosed with bile duct cancer in May. She is 63 and my father is 82, so when she first got out of the hospital she decided she would like to stay with us because of the level of care she needed (we live right next door in her old house so it was not too traumatic of a move for her).
My husband and I have completely taken over her care as well as raising 5 children and me being pregnant with the sixth.
My sister lives about 5 miles away, and will stop in maybe 1 day a week. My mother has been hospitalized 4 times since her diagnosis and the same sister (who does not work and her youngest is 5 years old), cannot seem to find the time to get to the hospital. The last time Mom was in for 17 days, and my sister visited 2 times. Meanwhile, we went every day because I know what it is like to be in the hospital and have no company. Just yesterday, my sister went to Six Flags which is only about five miles from the hospital, and she did not even stop there on her way home. It is very frustrating because all I hear about is how busy she is and how stressed out her life is, and I feel like she does not even have a clue...
What my husband and I both say is that you can't "change the spots on a leapard" and that at least I will have no regrets if my mom does lose her battle with this disease. I am sorry to ramble but I completely understand how you feel.

It is always difficult to be a primary caregiver, more so for a relative.
Do not expect help from family members who have not already offered assistance that is actual and real. Some people cannot handle the emotional and physical demands that caregiving entails. It is not your fault that others can't see their obligations and responsibility. Their sense of guilt for not being there for you and your mother is what makes them either offensive or useless. You are doing the RIGHT thing in caring for your mother, never for a minute doubt that.
Having said that, it is very important that you take care of you and your wife and family, emotionally and health wise. What would happen if either of you became seriously ill due to stress? Stress is a cause of illness and death so don't disregard your levels of tension.
Look to local social services to get ideas for short term respite care in hospitals, nursing homes or hospices. A week to recharge can make the difference in how you look at your mother, her illness and your life. It will also be good for your mother to socialize and for a change of environment.
Have your family physician do a stress test on you and your spouse. Armed with a diagnosis of marked stress, it will make it easier to get the attention of social services. Using social services isn't giving up, it just is using the help that is available. Does your employer offer sympathetic care time off? Was your dad in the armed forces? Maybe your mother qualifies for some help, either services or monies to offset costs of services. There are many companies who don't charge extreme fees, i.e. HomeInstead that can send a careworker for a couple of hours ($10-20 an hours) to your home and take your mom out shopping or for a stroll in the park in her w/c. It would do you all some good. Many agencies have volunteers that can come and sit with your mom for short periods. There are adult day programs run by medical personnel that are reasonable and enjoyed by the clients.
It is easy to get overwhelmed by the responsibilies and worry of caregiving. I feel isolated and helpless sometimes in the face of the enormity of the task, but it is the moral and ethical thing to do, whatever your belief. I take some comfort in that. We do society a service but best of all we stand up for the giving back to our family in the circle of living.
We stand with you, we honor your committment and feel your doubts, but we stand strong together.
Take care.

I am so sorry about the loss of your dad and your mom's illness. I just lost my mom in June and I was her primary caregiver. My mom had many relatives who lived close and not one came to visit or to help me out. I was home taking care of my 51 year old mom, my 10 year old brother and my 2 year old son. So I can feel your distress in not getting any help. That being said I think it's important that you talk to a Palliative Care if that is avaliable in your area, I know alot of places will provide a sitter to come and just hang out, or do chores around the house or just read to your mom. I didn't find this out until it was too late, well I guess I knew but I didn't think I needed the help, I thought I could do it alone. You can't. You need to be a husband to your wife and you need to be you and not lose yourself in all that is going on, your mom wouldn't want that.

  These people who aren't helping out will deal with this in some way, i'm guessing when it's too late, but know that you are doing the right thing and being a wonderful son.

 My heart goes out to you, your wife and your mom.