Topic: Family not sure what to do

My Aunt Pat was doing well until 10 days ago when she developed fluid in her lungs. She was sent to the hospital from the nursing home, and they drained her lungs twice, then decided to send her to a Hospice facility. They are giving her comfort care only, and she will not eat or drink anything.

First, I want to let you know that she lives alone, has no children, and her nearest relatives (my 2 brothers, sister, and I) are 1000 miles away. We have all visited her in the last few weeks and spent quality time with her and she has friends who visit her. Now we don't know what to do. My Aunt Pat has dementia and doesn't understand why she can't get out of bed or why she is not home. She sleeps most of the time.

My question is: Does she need one of us to be there with her? Or can we trust that she is getting the care she needs? I read the post about feeling like "crying wolf" and telling the children to come from great distances, only to have the patient rally, which by the way, is a good thing for the patient.

I hope this doesn't sound selfish or indifferent. I have a family and a job, and will have to make a trip there to take care of her personal assets once she is no longer with us. I want to do what is best for her without jeapordizing my job.

Also, I dread watching my Aunt Pat going through the process of dying. I've never done that before and it upsets me. I feel sad and worried much of the time.

Any suggestions?

Re: Family not sure what to do

You and your family have been wonderful with your Aunt Pat and I am sure for her to recognize the love you have shown.
You are mentioning that your Aunt Pat is now being cared for at a Hospice facility. Is anyone in the family or friend available to personally visit the facility in order to make sure that she is receiving the care she deserves?  With Hospice providing comfort care only, you might want to clarify the procedures at this facility. Should fluid develop in her lungs again, would they return her to the Hospital?  Have they ever tended to a Cholangiocarcinoma patient?  Do you have access to the medical personnel at all times?  Will you be updated on your aunt

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Family not sure what to do

I can only imagine how it must be to be so far away from a loved one who is dealing with such a terrible illness.  My dad is in the same situation in hospice comfort care.  Fortunately, someone from the family visits on a daily basis, but it made me wonder what we would do if no one was there for him nearby. 

Perhaps you could speak to the social worker at the facility to find out the best way to monitor his care.  Perhaps the social worker or another designated staff member could be in phone contact daily to go over any concerns about care.  Also, perhaps a trusted friend who visits your aunt on a frequent basis would be an advocate for her and report back to you with any concerns.  This way you would have a good idea of the care she is getting without having to travel until you need to.

You don't mention it, and forgive me for asking, but does your aunt have someone named as her power of attorney to make her health care decisions when she cannot?  I assume she has some sort of directive in place since she has entered the hospice program.  If not, it might be a good idea to have someone named to be sure her wishes are carried out.

Let us know how she and you are doing.

Re: Family not sure what to do

It's nice that you and your siblings can take turns to visit your aunt.  I did a lot of research trying to determine how long dad had so that we can also call in brothers and sisters from out of state.  I found a website with the result of a research study conducted on 100 cancer patients to determine statistically what the pattern and the length of time in each pattern was for cancer patients.  I was trying to find it but could not find it again.  But it was excellent.  Dad's process fell just about exactly into the timeframe  outlined in the study.  If I find it again I will post it.  It was most helpful for planning in these types of situations .
God Bless and I wish you all the best.  Just know that you are doing the very best you can and don't beat yourself up.

Rachel

Re: Family not sure what to do

Rachel is right. We all tend to beat ourselves up some, but it serves no purpose. We are all doing the best we can under the circumstances given to us & God knows that this disease does through us some curve balls. Please let us know how things are going. Take care of yourself, too.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Family not sure what to do

Here's the website and the first paragraph I found when my dad was in his last stages.  It was very helpful.  It's predicting "active dying"

http://www.mywhatever.com/cifwriter/lib … /4993.html

We have learned the most about active dying from following cancer patients, because their dying trajectories tend to be the most predictable. However, patients with other disease processes can certainly enter a pathway largely indistinguishable from that of cancer death. Morita identified four signs that heralded impending death in 100 cancer patients: the "death rattle," respiration with mandibular movement, cyanosis of the extremities, and lack of radial pulse. He measured the median time to death from the onset of these signs. They tended to occur in a rather orderly fashion, with the death rattle preceding respiration with mandibular movement (74% of the time), which in turn preceded cyanosis and pulselessness (63% of the time). The median time until death following the death rattle was 57 (+ or - 23, SD) hours, 7.6 (2.5) hours following respiration with mandibular movement, 5.1 (1.0) hours following cyanosis, and 2.6 (1.0) hour following lack of radial pulse.3 (I was struck by this study because until I read about mandibular movement, I had been unable to see it in my dying patients.)

I hope this helps you determine when you want to be there with your autn.

Re: Family not sure what to do

Thank you for the uplifting comments. I am sorry to say that my Aunt Pat passed away last evening. I was reassured by the Hospice social worker that my Aunt had the best possible care and she died peacefully. Also, she had 2 friends who visited her, one of them daily, so I had a source for updates. I am grateful to them for their care and concern.

I am sorry that so many of you are experiencing the same problem with distant loved ones who are sick. Yet, at the same time, I feel better knowing that I have people like you who understand the emotional roller coaster one goes through in dealing with this disease, especially long distance.

Thank you for finding that website. I know it will be of help for those trying to understand what a patient goes through when they are near death.

I am also grateful for Hospice pesonnel who took care of my Aunt. I didn't realize they would be available for grief support after the death of my loved one. What a difficult job they have, and yet they do it so well.

Re: Family not sure what to do

My deepest condolences to you and the family Aunt Pat has left behind.  You must be assured that you have done everything possible to ease her passing.  Hoping for your heart to heal....one day at a time.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Family not sure what to do

I am sorry to hear of the passing of your Aunt Pat. I agree that you must rest assured that you did everything you could. It sounds as if she died peacefully & without pain & had friends to ease her passing. You can be comforted by the thought that she has now passed on to a better place & is no longer suffering from pain & confusion. Know that I am thinking of you & your family & understand what you are going through.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Family not sure what to do

I am so sorry to hear of the passing of yor Aunt Pat, but happy in the knowledge that she is in a better place, where there is no pain or suffering. Our thoughts and prayers are with your family during this difficult time.

Joyce C.

Re: Family not sure what to do

Joyce ..... My sincere sympathy to you an dyour Family.  May Your Aunt rest in peace.

Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Family not sure what to do

I was so sorry to hear of your aunt's passing.  It was fortunate that she had the benefit of her 2 close friends by her side daily and also the love of family and friends far away.   

Thank you for sharing, and God bless!

Jan