a good talk on preferences for care at the end of life

Several weeks ago I began to tell you about transitioning Angie from an independent living apartment to the memory care unit in her retirement community.   Since then all the Moss kids have been arriving in waves to help hold down the fort.  I don't know if it's the right thing to have one of us try and be there regularly, but it feels too hard not to do that.  Everytime one of us walks in her room the response is exactly the same ..."oh Carol (Dottie, Ray, Mary Ann) I was just praying that one of my children would come to visit".   Who knew the Moss bunch would one day be the answer to a prayer? 

The hardest piece of this whole thing has been for the daughter part of me.   Realizing that I can just do my best; understanding what we are facing can not be fixed.   The palliative care nurse part of me however, does know there are some important issues that must be addressed.  Such as making it very clear to Angie's caregivers what her goals are.  It occurs to me that most of you don't have my background but from your comments it is clear that many of you have been through this with your parents.  For those of you who have not I want to share a few things.  AND I hope some of you will join in this conversation with what you have learned from your experiences. 

Angie wants to be comfortable.  She does not want to go to the hospital or undergo aggressive tests.  Procedures and interventions can always be offered but I know they will not fix her dementia and they may increase, and possibly prolong, her suffering.  The last time we went to see her primary care doctor we had a conversation about what mom would want to do in the event that she were dying.  She let us know she wanted us to "let her go".  She does not want attempts made at resuscitation.  This is important for the staff at the care center to know.   If she can not swallow safely she still wants to be able to eat for comfort reasons.  If she gets pneumonia she wants to have her symptoms treated but does not want to go to the hospital or have IV antibiotics.  She does not want a feeding tube.  She also has an "outside the hospital DNR" form on her record.  This is for her protection and ensures that if 911 is called for some reason they will not attempt to resuscitate her (which they are normally obligated to do if they are called).  

These are the basic points that make up a good talk on preferences for care at the end of life. I share my mom's preferences as examples only.  What is right for one person is not right for another.  The important thing is to talk about it ahead of time so you know what is the right thing for YOUR loved one.  

Just one more thing... Angie is not actively dying right now.  She may live for another year or even more.  But I do know she is on the road to dying.   As the palliative care nurse in the family it is my job to be looking ahead for roadblocks and make sure they don't cause needless suffering.  As soon as I think she is eligible, I will also get hospice involved for the added support they provide even for someone being cared for in a nursing facility. 

 OK - time for me to stop talking... and for you to start.

 

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Comments

[Michele Unger]

Oh, Carol. It's so hard to be the child of a parent on the journey to the end. The adult you are is logical and thoughtful, makes preparations for the inevitable, and tries to ease the suffering (mental and physical) of the dying parent. The child? Oh, man, the child just wants Mommy back the way she should be. I still feel that way, 16 years down the road. I ache for you all but I also applaud and shout "Brava!" for your strength and compassion and love. And your planning. You are not only taking such fine, loving care of Mama Moss, you are helping others in the same boat by sharing your story and urging your readers to prepare. What a giant, enormously loving heart you have!

Having gotten to know you and MA, via the blogosphere, I can see what a great family you come from. You are lucky to have such a mother, and she is lucky to have you all.

Hold hands with your mother. A lot. I did with mine, and it was a comfort then and it's a comfort to remember now.

Don't forget to laugh!

XO

[Linda Watson]

My suspicion is that the Moss bunch have always be an answer to Angie's prayers. :)

This is not easy stuff, obviously, but thank goodness for palliative care nurses. I am blessed to have a good friend who is a chaplain and works in hospice, so had help with my mom also. I don't know how it works in Kansas, but here in California, my experience is that the medical team will try to get the patient on life support, even if there are legal documents filed to the contrary. Once it's done, it's really hard to get that tube removed or any other intervention stopped. This was my experience with a friend's husband at a VA hospital. So, need to make sure that everyone knows the wishes of the patient and have the right documents on file.

What a blessing that you can have this conversation and that the Moss bunch can be present. You are all in my prayers.

[Sharron]

So well said. xo

[Joyce]

Beautifully written directive. It includes empathy, compassion and the hard core realities. Your palliative care expertise guarantees Mama Moss will have her needs met in a loving way. The Moss Bunch will continue to be the answer to her prayers.
You've started the conversation for all of us... It is tough to face ones own mortality.
In your mind's eye, hold the thought that those of us who know you through your blog, and MaryAnn's, are walking with you on Angie's journey. When you need a little hand holding reach out to us. XxOo

[Mary]

Thanks for sharing this with us. My parents are still fine but I anticipate being in this situation at some point. I have one specific question about this:
"If she can not swallow safely she still wants to be able to eat for comfort reasons." Does this mean she would get IV nutrition, or something else?

[Carol]

Excellent question Mary. No, in my mom's case she would not get IV nutrition. That might be appropriate for someone who was having good quality of life, but I anticipate when my mom begins to have trouble swallowing, and probably aspirating some things, the quality of her life will be unacceptable to her. IV nutrition is something that can only be done for a limited amount of time and it has risks associated with it. It also is not usually done on hospice and could not be done in her memory care unit. Her appetite has already decreased significantly from what it used to be. If she is hungry she will eat what she wants for comfort. Of course if she is eating very little her body will decline as part of the natural dying process.

[Rhonda H.]

Angie is so fortunate to have some wonderful children. ANd it is even better that you are a nurse and can add to her care by your wisdom. I will be facing a similar thing with my mother soon and it is reassuring to see some of the options as you discuss them. Thank you for being so open about all this.

[Janet]

I just want to say thank you for writing about this.

[nancy (covey member)]

A genuine thank you for this personal reflection, Carol- You are a wonderful teacher and nurse, and how I pray that a small part of Angie feels how lovingly and respectfully she is being cared for at this time. I am grateful that this conversation has occurred with my mom and she has given Jennifer and I us clear directives for this time in her life. I pray that your blog entry serves as guidence and impetus for all readers/friends. We will wait to see how the positive impact from your advice plays out but I am certain that at least one of your blog fans will thank you soon for sharing, and given them the courage to start talking to their parents and spouses. The sense of peace and clarity is a good present for all of us to give ourselves… tis the season! -xo

[Leslie J. Moran]

Carol, this is really wonderful. Being of a "certain" age, and having gone through this numerous times, you have articulated events perfectly. Anyone who reads this will gain valuable insight into the end of life process and will be well apprised in advance of the eventualities. Knowledge is power and this is a very powerful piece. Brava my dear for your continued sensitivity and great care for your mother, your family, and yourself. All best.

[Joan Clarke]

Such a thoughtful, compassionate posting today. Being of an advanced age myself, I have had this talk with my children and husband. I hope they respect my wishes which are identical to Angie's. I don't want end of life prolonged when there is no quality to it. I'm appalled when I read or hear about extensive testing or procedures done to people of very advanced age...even 90+ years of age! My grandmother, mother and members of her family all lived to be late 80's or 90's. Grandmother and mother died in their sleep, both still sharp as tacks. That's how I hope I depart this planet. We have living wills with all these details written out.

Thank you for your compassion, knowledge, caring of your mother and your blog followers. You are loved for what you do here.

[Nancy from Fair Oaks, CA]

What can we expect from hospice care? Is there a time limit on how long hospice will be there for our family member? Also, how will we know when hospice is needed and what if the family member "fights" the idea of hospice yet the family truly needs help? Sorry for all the questions but this is what popped into my head as I read your post (which I thank you for, Carol).

[Pamela]

Important subject matter and a very well written post. Bless the Moss family and Mama Moss. I have been through this twice already with my own parents and we have a 99 year old determined to live life -- and end living -- on his own terms. God bless him. Thanks for posting this.

[Anne]

I appreciate you sharing what your family is going through. This is all eye opening to me. My mom is 75 and still in good shape but am concerned as own to deal with issues that may come along as she ages. Thank you Carol.

[Lynn Dirk]

I have been down this road, twice. I did all you mentioned but at one point my mom broke her hip while using her walker that a janitor/fix it man adjusted so the brakes would work better (not a wise thing to do!) She went to the hospital for three weeks over this and never really recovered. Some things I think I did right in the years my mom was in a nursing home; I visited at different times every day, so no one knew when I might arrive and many times I came and went a few times per day. I googled every med and took my mom off of many things towards the end that seemed more to prolong suffering. I refused to let them give my mom "Thick" water! awful stuff. I still took my mom to the salon so she could feel good and plucked her brows and put on her lipstick. Hospice was a GODSEND! When my mom was dying I kept her mouth wet with a straw dipped in water. I told my mom it was ok to let go, I'd hold the fort down. And, I had a nurse tell me this most important piece of advice...It's almost always the people and family members who are far away and not doing to much that make the most noise about the job you are doing as the caretaker and decision maker. It is natural for the siblings far away to feel helpless and it's natural for the caretaker to feel resentful.

[Edie Trull]

I am quoting you here:

"As soon as I think she is eligible, I will also get hospice involved for the added support they provide even for someone being cared for in a nursing facility."

I just had to put my mother into a nursing home, Monday a week ago .. very understaffed and I worry every day about her. What does hospice do in her situation? She has dementia, and can't walk now. What eligibility does she need?

[Loretta]

Carol, I really appreciate hearing your palliative care nursing experience. We have been through 5 elder passings in the last twenty years and each has been so unique and presented different issues. As a lawyer, I have counseled clients on their health care rights, living wills, DNR, etc. But when it is one of your own, there are so many emotional issues attached to decision making, particularly during crises.

The one thing I know for certain is that when all the children are on the same page and can actually have that conversation with the elder, it helps everyone keep the best care of the elder as their first priority. You guys are just so loving and close, I know that Angie will never want for comfort and love.

[Marcia G.]

Hi Carol,
I found your blog via your sister's blog and her mention of this particular post of yours. You are doing a wonderful thing by sharing your journey with your Mom and also your knowledge as a palliative care nurse.

My husband and I took care of my mom in our home for three years. (2003-2006) I finally had to admit I was not able to continue to care for her in the manner she deserved so placed her in a nursing home with additional support from hospice. She was only there two days when she passed away. It was a long journey and especially difficult because my husband and I worked full time during the entire time my mom lived with us. I look back now and realize we needed to get extra help long before we did. But you do the best you can and hopefully learn from your experience.

I would like to add to your narrative this bit of advice to anyone embarking into the world of elder care. Whether the person has dementia or has all of their cognitive functions in tact, PLEASE take care of yourself. Do not neglect your own physical and mental health needs. After a couple of years of taking care of my mother I realized I was crying every single day as I prepared to leave for my paid employment. I wanted to take care of my mother. But it was also massively overwhelming at times. So finally I relented and went to my own doctor and asked for some help in the form of medication. I took Lexapro once a day but it made all the difference in the world. I quit crying every day and was able to function so much better and be the kind of caregiver I would want for myself. So do not try to be tough or think of yourself as weak if you have to ask for help. There is NO SHAME in that and you'll be a better caregiver for admitting you need help and then getting it. Once the terribly stressful time with my mom was over I no longer needed medication. It served its purposed and got me through the tough times.

Just remember you cannot do the job that you have taken on if you allow yourself to become sick in the process. So make sure you are taking care of YOU by taking breaks, having respite time and getting medication if that is what is required to get you through it.

Thanks for the post, Carol. I'll be back to see how things are going and for more wise words from the trenches. You and your sisters are very gifted and so lucky to have each other!

[Carol]

Nancy from Fair Oaks - Hospice care is appropriate for someone who has a life expectancy of 6 months or less. That is a hard call to make. If you are not sure it is the right time, set up an informational visit with hospice and let them decide if the family member is "hospice appropriate". It is not uncommon for family members not to agree on when is the right time for hospice to get involved. Some people think that hospice helps people to die but really they help people to live as well as they can for as long as they can. AND they are a wonderful support for family. All good questions!

[Carol]

Edie: I might have answered your questions in my response to Nancy. If your mom is no longer able to get out of bed she may be eligible. Criteria frequently looked at include whether they are able to feed themselves, weight loss and/or how much they are eating, if they are incontinent, and whether or not they have shortness of breath. If hospice were involved in her care they would be visiting her regularly to assess for any discomfort and make sure that if it was present it was being addressed. It couldn't hurt to have a hospice do an informational visit with you. E-mail me if you have further questions. Carol

[SusanS]

Carol, thank you for opening this conversation. I'm a speech pathologist working with elderly people at the end of life. I work with an amazing doc who feels that dying is a part of living and has helped me understand so much about how we die. The most profound conversation I heard him have was with a daughter who was pushing to get a feeding tube for her 89 year old mother who was clearly (to those of us who were with her every day) ready to go. The daughter wailed "I can't just let her STARVE TO DEATH." The doc very compassionately led her to an understanding that most elderly people at the end of their lives just don't feel hunger and thirst the way we do and that its OK to let their bodies dictate when and what they eat. He also said when the body slows nutrition and hydration intake its preparing for an easier transition into death. To Lynn ^^^ who is grossed out by thick water: I so agree, however, some thickeners are less disgusting than others. If a little thickener keeps you from coughing uncontrollably, it's much more appealing. I once thickened a 40 year old scotch at a patient's request. He loved it! :)

[Judy H.]

Such a difficult subject, but knowledge is power. My mother is still in good health at 95, but she's...95. Thanks for the insight and information. At some point we will have to deal with this unpleasant reality.

[Caroline]

Don't be afraid to call hospice, those of you who have questions. They will be of such help and will tell you what they can and cannot do. My mother was at my brother's house and my sister and I moved here(not just because of that). Hospice was so helpful when things got to the place here we had trouble taking care of Mother. As long as she could help just a little, we were fine. But even with knowing what will happen it is difficult for someone without Carol's level of experience to see what stage matters have reached. It can be frustrating and maddening, but it can be a blessing to care for someone who cared for you.

Very good questions and answers following a very good post.

[SMM]

My Mom died this past Feb. just weeks before she would of turned 90. She was the most prepared person I have ever known. She had End of Life Directives issued orally and in writing to her family doctor. She told all of her children her wishes. She planned her own funeral. She did all this at least 25 years ago. She was ahead of her time, of that I am sure.

It is never too soon to have the conversation and equally never too soon to make your own departure from this world only sadness for those you leave behind rather than confusion, legal hassles and family in fighting about how each of them know best what kind of care you might want near the end.

My Mom always commanded (rightfully earned) what she deserved and so when she had a stroke the medical community had their role, her children had their role and her wishes were followed.

[Amy at love made my home]

This is such an amazing post Carol, I am at a loss as to what to say, other than I hope that all goes as well as possible for your Mum, and for you and all of the rest of the amazing Moss Bunch. You are obviously doing such a wonderful job and how kind of you to share this with the rest of us. It helps to know that there others out there dealing with these issues, and to know that you are not the only one, even though it is so sad that you are having to deal with this. It is so good that you are having these conversations sensibly and thoughtfully. I wish that I had a little Carol that I could carry round in my pocket. Thinking of you. xx