The Long Gray Line Visited My Dad in Hospice

One of my favorite pictures with my Dad at Fort Belvoir prepping for a parade.

Today The Washington Post included a story from a son who watched as his mom started to talk to her dead relatives when she was in hospice care. It freaked him out, as one would expect. To me, it brought a smile as I recalled the final night of my dad’s life.

Let me explain …

My dad was moved into a hospice facility when we couldn’t arrange the right care for him in his retirement community. He was living with my mom who had vascular dementia and didn’t want any help in the apartment, but dad needed constant support to keep him comfortable.

I end up in the hospice facility with dad in what turned out to be the final night of his life. He was medicated for comfort, but would have periods of wakefulness. During this time, I watched as my dad was looking right to left and saluting. I had seen him do this many times before–he was saluting soldiers marching past his bed that I could not see.

What I recognize now, but apparently instinctively felt, was that my dad was very close to death. My siblings will recall my angry phone call which was very much out of character asking them why they weren’t bedside.  To be fair, my siblings had been with dad all day and helped move him into the hospice facility. None of us expected his stay to be so short.

I look back on that experience and agree with the author of the Post article. I believe my dad got comfort from seeing as West Point describes as The Long Gray Line of soldiers marching by as he was preparing to join them. Remembered. 


80 Percent Want It. 10 Percent of Us Get It.

endoflifecounselingAccording to The Washington Post, 8 in 10 people of all ages think it is important to talk to their doctor about their end-of-life wishes, but fewer than 1 in 10 report having had these discussions. After having to sit bedside for two parents in the past three years during their end-of-life, this makes me both angry and sad.

I was blessed that I knew my parents as an adult and we often discussed all kinds of things, including views on incapacity and death. Both were in hospice care, and we had time to say our good-byes.

However, there are many aspects of this issue that only a loved one may understand. I recommend you take some time to read the article When a doctor and a patient disagree about care at the end of life (The Washington Post, April 19, 2016). The article lured me in because my mother’s doctor said we had to lift the Do Not Resuscitate (DNR) order before she would consider mending my mother’s broken hip. I was speechless and overloaded by the idea that to abate my mother’s pain, she might return with broken ribs and move into a deeper realm of dementia after surgery. What kind of choice is that?

I called in some help from an Aging Life Care Professional and was advised to request a Geriatric consult. The doctor spent time with me to understand my mom’s mental status and health care wishes. In the end, her health was deteriorating and she would never qualify for surgery.

End of life choices aren’t for sissies. The earlier you start talking about the real choices your friends, colleagues, and loved ones are having to make, the easier it will be for you to be clear about your choices with those that will step in to speak for you should you need it. Recommended.

A good option to help start thinking about this topic and choices that might have to be made is The Conversation Project. Get your free kit here. It’s much easier to do this when you are healthy and no medical concerns are looming. 






How the Game of Thrones Soothed my Caregiving Guilt

downloadMy son got me hooked on “Game of Thrones” a few seasons ago. When he left for college, I realized I would no longer have a viewing buddy. My daughter quickly volunteered which meant there would be hours of TV getting her up to speed on the show.

During the 4th season, there are a few scenes in which people were dying and out of mercy, someone put a knife through their heart, or slit their throat. My daughter wondered why they would do this, it struck like violence, but in reality they were exhibiting mercy. It was the only way to help them avoid lingering in pain. As my daughter expresses dismay, we start to talk about it and I immediately recognize the complexity of mercy.

For anyone who has managed the hospice journey for a loved one, you understand the conviction it takes to be bedside and demand more comfort medicine.

You watch as your loved one’s body fights, even against what you know to be their end-of-life wishes.

I still feel conflicted about the last week of my mom’s life. She broke her hip and surgery was not an option; she had a stroke and no longer recognized me; she was unable to enjoy chocolate and would pack it in her cheeks; she was frightened and uncomfortable. We did what we could to bring peace. Now it’s time for me to find my own. Battled. 

Palliative vs Hospice Care?

pileofquestionsI’m still a little fuzzy on the distinction because what I heard (which might not have been exactly what I was told) differs a bit from what I’ve read. I find that there is generally conflicting information on the nuances between these two levels of care and each provider is a little different. However, we are going to move past that sweeping disclaimer and I will share with you how I view these two services and the role they have played in the care of my parent’s.

When my dad, who was in a moderate stage of Alzheimer’s, was diagnosed with a cancerous tumor on the back of his tongue, we pursued treatment options and realized, not only was he not up to the fight, but before we even got to treatment options he would have to be put under anesthesia just to clean his teeth. I saw how poorly he responded after being put under anesthesia to mend a broken hip and that news was the final straw. We called in hospice to make him as comfortable as possible. He was in his apartment with my mom for about a week after understanding his diagnosis. He was in a lot of pain and had fallen trying to get to the bathroom in the middle of the night so we had him transferred to the hospice facility. He passed after the first night in the hospice facility. The team worked to keep him comfortable. We were shocked to have him go from diagnosis of a tumor to death in exactly 4 weeks. For me, I’m glad he didn’t suffer any longer, but I still cry over my loss.

Mom was admitted into hospice care after she complained of back pain, was treated with Tramadol, and for the lack of any other way to describe it, behaved like an overdosed hippie. She could move but not manage to even stand or follow simple instructions. She tried to talk but she only spoke soundless words. I wasn’t really clear that she was in “hospice” until I called to have the doctor explain it to me. It took several weeks for her to interact with me and she required a wheelchair after being bed-ridden for so long. I still wasn’t sure what it meant until as my mom began to improve, I asked if physical therapy (PT) might help get her back on her feet and was told that PT isn’t something you do with a hospice patient.

In short, I believe hospice focuses on comfort when a terminal illness with a near-term end-of-life is expected, and no therapy would be provided to improve quality of life. Palliative is geared toward those who aren’t looking to extend a life, but want to be comfortable. Generally, most with varied forms of dementia are in palliative care since there is usually a longer life expectancy.

It’s all confusing and each bit of information seemed to foster another questions. It has served me well to meet with the medical and care team and explain our goals for my mom’s care. It never hurts to ask. You know your loved one best, so do what you feel is right. Satisfied. 

For deeper answers on this topic, please visit the following:

The Layperson’s Guide to Palliative Care

The Layperson’s Guide to Hospice Care

What Palliative and Hospice Care Mean Are Not the Same!

Others step in when you need it most on the caregiving journey

amymessageI was recently asked about my caregiving journey. It’s been long, strenuous, challenging, rewarding, heart-breaking, fulfilling, and relentless. We recently moved mom to a new community focused on caring for those with dementia. I immediately lost one of our long-term caregivers, and then a second regular within the first two weeks. My mom’s not integrating into the scheduled activities. I got enough calls about it that I met with the Executive Director who suggested we consider new caregivers. This week we are trying out two new assistants to help get mom in synch with her new community. I know the change isn’t good for her, but for the short-term, I know if we get her to participate in the scheduled activities, we can get the extra-assistance out of her room.

She is now in a smaller room and the caregivers are with her from 8 a.m. to 8 p.m. She doesn’t like that others are with her. In her old community, they could sit in a connecting room and she didn’t know they were there. Now they are within a few feet of her during the day and she’s choosing to sleep more.

My golden rule with mom: If it doesn’t make her happy, don’t do it. I am trying to figure out how to get her more independent so we can eliminate the personal daily assistants (pdas). To do that, we need her to engage in the community. This challenge is weighing on me. Thankfully, I have very engaged siblings and my brother and his wife are coming to town to visit with mom this weekend.

Yesterday, a volunteer with the hospice company called me to ask if she could stop by and visit my mom? YES! I call her back to share more information about my mom and she tells me she will stop by to visit mom at dinner. I know my mom with enjoy company for dinner. She sends me a nice text after her visit and tells me she will visit her again on Friday.

This woman is a ray of sunshine to me. She has no idea that for decade leading up to the early signs of dementia, I ate dinner with my mom every Tuesday night, and then my parents came to my house for dinner every Friday night. The reconnection to this memory brings a smile to my face and the idea that someone else will stop by to visit mom in her new community and have dinner with her every Tuesday and Friday night brings joy to my heart.

The journey is long, but there have been and will continue to be so many people who have walked with me it makes it easy to continue on. Appreciated. 

Are Ensure Shakes and Hospice Compatible?

ensureMom has been moved into hospice care. We’ve not been told her death is near, but there is little hope her condition will improve. When it was suggested, The idea was to have a doctor who would focus on keeping her comfortable. She’s been more communicative than she was two weeks ago, but those moments are sporadic and unpredictable.

I realize what a gift my Mom gave us when she told my brother and I that if she were in a poor health situation, with little hope of improvement, we should “push grannies chest on her.” Since we don’t have a legal or moral option to help fulfill our Mom’s wishes, we are being very vigilant about how to best navigate this final phase of my Mom’s life.

I’m currently fixated on the figures released by Health & Human Services that share 7 out of 10 Americans over the age of 65 will need some form of long-term care services. Women on average need it longer (3.7 years) than men (2.2 years). Most of us hope we will die in our sleep or at least swiftly. That just isn’t the reality of our current world. A colleague that focuses on helping individuals put together their health care wishes M. Jane Markley reminded me of a tool that individuals can use to start thinking about and discussing what they might want to happen in their final years. It’s called the The Conversation Project. It was very easy for me to complete my copy. If you are caring for a loved one, how valuable would this have been to help guide you through the tough decisions you must face/faced?

I know that I have been aiding or managing matters for my parents for nearly 5 years. I was fortunate my parents talked about end-of-life issues before they were needed. It wasn’t dark or gloomy, it was just something that came up as dear family friends became ill or passed away. I was fortunate that I spent a lot of time with my parents as an adult so I knew them. Knowing what they believed didn’t make the decision on how we supported our Dad and managed his cancer any easier, but looking back, I’m confident we did the right thing for him.

Yesterday I was asked to pick up some Ensure for my Mom. I immediately confirmed that I would, but I started to feel a fracture in my belief that I was fulfilling Mom’s wishes. We have the DNR in place and is giving her nutritional supplements the beginning of the slippery slope?

When my brother was visiting he said he witnessed those caring for her working very hard to get her to eat. We spent an entire evening talking through this and felt that our Mom wouldn’t want to be coached so vigorously into eating. For several years she has bristled at any who commented on her food choices or lack of appetite. We want to follow her lead, but also recognize she has dementia and don’t intend to have her starve. It could just be that she’s having trouble swallowing the pureed food.

I reach out to both the Assisted Living Community and my hospice care case worker. “Help!”  The head care manager calls me to share that as long as my Mom’s eating half of her breakfast, which she’s doing, they don’t see the need to provide supplements unless she is saying she is hungry. The hospice care manager shares that many of the individuals in their care use these supplements. If drinking them provide enjoyment, don’t hesitate to offer it. The best reason she gave was that the nutrition provided would help her skin which is now started to get red and threatens to tear. The reality is that when she’s ready, she will just stop eating and drinking. I realize the shakes might be a better option than the pureed food and dropped off a variety of flavors.

This is just another complicated issue we are facing as we want to make sure our Mom is comfortable, but not do anything that might unknowingly extend the poor quality life she is now living. Considered. 

Moving Dad into the Hospice Facility

stretcherThe first evening after the Hospice Doctor warns us that a fall could put Dad on a very bad path, my Dad falls in the middle of the night. I get the call at 4:30 a.m. Thankfully, my sister and brother are both in town now and meet him at the hospital. He was not injured.

We immediately decide we need to move him into the in-patient facility. I know the move will be very hard on my Dad cognitively. I ache to think of him waking up in a strange place to recognize no one or have any idea how he got there.

He is moved and my brother and sister spend the morning and early afternoon with him. He is so medicated, no one can really communicate with him. He is alert, but agitated. For the past few days, he has been sleeping most of the day so something is off.

My siblings leave to get my other brother who has just flown into town and visit my Mom. By the time I see my Dad, he’s doing better and recognizes me, but he is agitated.

I talk with the nurse and she gives my Dad some morphine. I then get instructions on how to wet my Dad’s lips and mouth and he greedily starts to bite on the sponge to get water on his tongue and to his throat.  The nurse shows me how to ask him to squeeze my hand if he is in pain so I can be his voice and get him more medicine.

For hours my Dad floats in and out of sleep. When he is alert he is looking around the room, reaching out and even saluting to people I can’t see.  The Chaplain visits and I ask that she prays with me and my Dad so he knows that it’s time for him to pass into heaven.

After we knew we could not treat my Dad, I ha’ve prayed that God would make his suffering here short.

I feel very alone and very sad that my Dad does not seem to be comfortable. Frightened.  

What’s the right level of Hospice Care for my Dad?

hospiceAll my Siblings join the call as the Hospice Care Manager visits with me. She explains the services they offer.  I walk her and my siblings through a recap of the past two weeks. All of my Siblings agree we want to start services and ask how soon they can start. The first visit happened that night.

My sister is going to fly in and will be in town when we meet with the Hospice Doctor and Head Nurse who will assess my Dad and make sure the palliative care is serving his needs.

When the visit happens, it’s been one day since I last saw my Dad and he’s weak and his throat looks swollen. We know he’s lost nearly 25 pounds in less than 3 weeks. I’m sure we made the right choice, if the teeth cleaning didn’t wipe him out, the insertion and additional tests needed to put in the feeding tube might have.

We go over the good outcome path and the complication outcome path. We do know my Mom isn’t strong enough to really help my Dad, so we discuss bringing in additional care. From experience, we know my Mom will kick them out.

We ask the Assisted Living facility to up the visits to my parents room to every two hours. We hope this might be enough because the risk of falling for my Dad is a very great possibility and will only add complications to his care.  Our only other option is to put him in their in-patient facility, but I wanted to try to keep my parents together which keeps both of them more stable. Tested. 

The Crushing Significance of Hospice

crushedI speak with the Hospice doctor and ask him what type of care of comfort they can provide my Dad. He explains how they can help him. We really have no idea what to expect. We know my Dad isn’t taking in much food or water now. He’s very uncomfortable and we want to help him.

Hospice provides palliative care for individuals with a terminal illness. They will help give my Dad relief from the symptoms – primarily pain – that plague him now. There is not a short window of time condition as I assumed when Hospice care was first suggested by the head nurse at my parent’s Assisted Living facility.

My Dad can stay in his apartment with my Mom as Hospice comes in to assist in his care.

My brother and I realize we made this call without really talking with our other brother and sister first. As my brother is flying from town to return home, I call my other brother and sister. Thankfully, I get their voice mail because I’m a sobbing mess on the phone as I tell them what’s transpired over the last 24 hours.

My sister calls me back before she listens to the message and I’m still crying. I tell her she will have to read my email summary — I’m unable to get out any more complete words. I write-up and send my siblings a summary of the last 2-days of medical appointments and invite all my sibling to call in to listen and ask questions when I meet with hospice tomorrow.

While I believe it’s the right choice, it’s really our only choice now and is not an easy one to make. Crushed.

** My apologies as I get my blog up to speed with the events that have happened in the last week and a half.