Facing the Ghosts of our Loved Ones with Dementia

DadMemoryTwice in the past week I have driven by a bakery that makes saltenas that I took my Dad to in the last month of his life. Right after I was told he had a tumor on his tongue, we had a variety of appointments to figure out what it was and how to treat it. One of the first appointments was a scan to identify the size of the tumor. As I was sitting at the office waiting for him to return with the medical assistant, I did a search on Yelp for a lunch place. The bakery had great reviews and I knew my Dad would enjoy something out of the routine.

I had hoped that the soft beef and potatoes would be easy for my Dad to eat, but he struggled through lunch. He continued to be his strong, stoic self and tried to enjoy the meal. I had no idea how sick he was but immediately recognized that it was just too painful for him to eat. I couldn’t believe I hadn’t recognized this earlier. Just like he hid his dementia, he did a good job of hiding the fact that he wasn’t really eating much anymore. I had noticed that he was losing weight and asked the doctors but they chalked it up to his disease state.

I was surprised the first time I drove by the bakery. I immediately recognized the area and the last time I’d been in this here. When I drove by it again today, tears started to form. I quickly remind myself that my Dad’s in a better place.

I miss his quiet calm and his good nature. I wonder if there will ever be a time when these memories don’t bring tears to my eyes. I’m not sure if that is a good thing. Missed. 

Background: Last year at 5:45 pm on the Friday of Labor Day weekend, the nurse from the medical team at my parent’s retirement community called to tell me they found a tumor on my Dad’s tongue and he needed to get to an oral surgeon ASAP. Over the next weeks we worked to get a diagnosis and determine treatment options. We never made it through the gauntlet to get him into treatment and he died in a hospice facility four weeks later. While I feel regret that I couldn’t have caught this earlier, I had been trying to find out why my Dad was slurring for months and took him to an external doctor for a second opinion. I know that in some ways this was a blessing and he didn’t have to continue to live while the Alzheimer’s robbed him of his self. I’m still a bit conflicted over these events. 

Good Morning and Good-Bye

goodbyeWhen I arrive to visit my Dad in the morning, he is breathing very heavy, short breaths. He seems more comatose than asleep. The nurse comes in and gives him some morphine. I ask her what his breathing like this means and she says it typically signifies pain. She tells me the Doctor will be in soon.

They decide to move my Dad to morphine more frequently. His breathing is not slowing down. He now has a temperature. I read their booklet and believe my Dad is in his final hours. I ask the doctor to give me some guidance on a window of time. She tells me based on how fast my Dad’s condition has declined since yesterday, she would guess hours to days.

My siblings and Mom are all driving to the facility so I send out a text telling them what I just was told.

I’m asked to leave the room so they can bathe my Dad and I go sit by the fireplace in the family meeting room. I ask them to let me know when I can rejoin my Dad. Within 20 minutes the Doctor rounds the corner with the Chaplain.

I know what’s coming. When the Chaplain asks me for my name, I can barely get it out. It takes the Chaplain three tries to understand my name is Kay.

He tells me my Dad is gone and I double over in grief. I’m surprise at how hard it hit me. I am happy he did not suffer long, but know that I will miss him terribly.  Even with his dementia and tethered tongue, he was kind and always interested in how the kids, my husband and I were doing.

I sit by my Dad’s bedside until the rest of my family arrives. Grief-Stricken.

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. 

The Roller-Coaster of Hope and Anguish

rollercoasterfearFor a few days, we felt hope that we could get my Dad comfortable. We could at least give him some more time to enjoy eating, drinking and talking.

We quickly realize that the road to get my Dad to Radiation is too long and difficult for him to travel. We knew the feeding tube option was horrible, but had hope he might have another good year or two with my Mom.

My first thought when my Dad’s speech was funny was that he was having the swallowing issues seen with Alzheimer’s – but it seemed really early for that to be happening.

We recognize that putting my Dad through general anesthesia, possibly twice, then 7 –weeks of Radiation, will not only be incredibly painful, but will also further accelerate his symptoms.  Might we possibly cure my Dad of cancer to move him into the Dementia Ward?

My brother and I discuss the reality and decide that we are on the wrong path. We request that the Assisted Living facility refer my Dad for Hospice palliative services. Nauseated. 

Door Number 1: The 7-week Radiation Option

petscan** I apologize to my subscribers. You will get a slew of posts as I quickly bring my blog back to real-time today. 

The Pet Scan shows the tumor in my Dad’s tongue and mouth base. It also shows that the lymph nodes in his neck are also cancerous.

The Oncologist walks us through his recommendation: 7 – Weeks of Radiation

My Dad is not strong enough now for the Radiation / Chemotherapy cocktail, so he suggests 7 weeks of Radiation. He tells us it will be about 2 weeks before the tumor starts to shrink in his mouth. Before we can move to the next step, we will have to get my Dad’s teeth cleaned and have a feeding tube inserted.

Sounds simple, right?

We ask questions about the feeding tube insertion. I share that given my Dad’s age and cognitive state, having him undergo a general anesthesia is a concern for me. When my Dad broke his hip 3 years ago, he was never the same after the surgery to insert the pin. There are some documented issues when general anesthesia is used for patients with dementia.

I’m told it’s just out-patient and a really simple operation.

I get my Dad scheduled for a dental visit that afternoon with my beloved dentist. His motto is if you feel pain the dental chair – you’ve got the wrong dentist. Thankfully, my brother is here and can get my Dad to his appointment. Focused. 

The Glimmer of Hope from the Oncologist

rayofhopeAt our appointment with the Oncologist, we get a quick education on the diagnosis and treatment options. We now understand the location of the tumor and the speed with which it is most likely growing. The Oncologist delivers to us a ray of sunshine that my Dad could be “cured” with radiation. In our case, it’s a palliative option for his comfort. Oral cancers are very painful and it has taken my Dad’s ability to speak, and it’s too painful to eat or drink.

We had scheduled a second opinion appointment and told the first doctor. The first doctor get’s us into the second opinion’s doctor the same day. By the end of the day, we understand that we have 3 options:

  1. Traditional Radiation: A 6-week course of radiation that is a more comprehensive treatment;
  2. CyberKnife: A 5-day course using the CyberKnife technology to bring more immediate and a shorter term solution;
  3. Nothing: Do nothing but work on medications to treat my Dad’s pain and discomfort.

My Dad sits through both appointments quietly. We ask a lot of questions and understand the pluses and minuses of all the options. My Dad agrees he is uncomfortable and would like to fix his tongue.

Our next step is to schedule a Pet Scan to map the tumor for radiation and to see if the cancer has spread. That appointment is set for tomorrow.

Our challenge is to make sure my Dad hasn’t had any sugar, which can show up as a false positive. He usually drinks his coffee with just cream, but we know someone has to be with him to make sure he doesn’t somehow bring sugar into his diet and taint the results. We can’t just tell him, because he won’t remember. My brother volunteers to go down to be on site to make sure my Dad has followed the preparation instructions and is ready.

Once we get the results, we will know if my Dad needs the 5-day or 6-week treatment. We feel the glimmer of hope that we can get my Dad comfortable. Encouraged.

The Oncologist will see you tomorrow

flu shotWe are obviously rookies at dealing with cancer. My Dad is not going to choke in his sleep and is not aspirating. The Emergency Room doctor understands our angst and helps get us into the oncology practice the next day.

After my Mom was escorted out of the Emergency Room, we had to wait for the test results. However, now my Dad is anxious and starts demanding that we leave.  When I remind him that we are there to help fix his tongue, I can usually buy a few more minutes, but then the demand returns.

I was holding the bathroom break for another stall tactic and finally have to use it. When I return, the nurse has arrived with a flu shot for my Dad. He apparently requested it when I left the room. The sight brings a smile to my face. My Dad has always gotten his flu shot and when we sat down in the room, he noted the sign that advertised “Get your Flu Shot Here!”

We are unsure of the cancer fight we are about to embark upon — but at least we know my Dad won’t have to worry about the flu this winter. I will put that in the Win column. Amused. 


** Full-Disclosure Policy: My posts are a little behind real-time. But I wrote these as I was going through the process, but was unable to complete and post while we were in the midst of caring for my parents. 

Security, will you please escort my Mom to the car?

security guardMy brother has come to town to help manage the coming appointments and support my parents. When he goes out to visit my parents on Sunday, my Mom reports that my Dad seems to be choking in his sleep.

We know he has a tumor in his mouth but are waiting to see an oncologist and don’t really understand how fast the tumor can grow or its exact location. We understand the tumor has tethered his tongue and he can’t move it at all. In mid-August at his physical, I watched as the doctor had him stick out his tongue and put her hands in his mouth to see if she could find any reason he was slurring and found nothing.  A month later, he can’t move his tongue and finds eating painful. Could the tumor be growing that fast and be blocking his airway?

My Dad agrees to go to the Emergency Room — our appointment with the oncologist is several days away and now my Brother and I are worried my Dad might choke to death before we even get to that appointment. I meet my Dad, Mom and Brother at the Emergency Room.

My Dad sits quietly, but my Mom begins to grow anxious and asks why we are here. She tries to talk my Dad into leaving. When we review the reasons we came with my Dad, he agrees to wait a little longer. My Dad is called and I walk with him back to see the Doctor while my Brother stays with my Mom. I tell the Doctor that he seems to be choking, recap the details of the tumor and mention that we haven’t seen our Dad take in more than a few sips of liquid in days. They put him on an IV as we wait to see if he’s aspirated.

The activity and change of scenery is difficult on my Mom and she is agitated. She starts talking loudly and rudely in the waiting room. My Brother brings my Mom to visit my Dad in hopes it will calm her down. Instead, she begins to berate my Dad and now he is agitated too. She demands that we leave and my Dad tries to get up but realizes he has an IV in his arm. My mom moves to pull it out of his arm.  As I’m trying to divert my Mom, my brother goes to get Security.

We recognize that the change of scenery and getting bumped from my being my Dad’s advocate has tipped her scale and she is really off-balance. My Mom orders me to leave the room. Before I go, I make her promise me that she won’t pull the IV out of Dad’s arm. As I walk out, the nursing staff moves in  as my brother arrives with Security. Thankfully one of the nurses is able to soothe my Mom and helps walk her to the car so my Brother can take her home.

I as sit in the hallway, the ridiculousness of the situation hits me and I begin to laugh  I’m still chuckling as I walk back into my Dad’s room to continue the wait. Witnessed.

Are You Ready for the Icky Discussion?

heartbreakWhen my parents were going through the cognitive testing more than a year and a half ago, we would sit through hours of discussions with doctors who were telling my parent’s they had dementia. My mom would argue and my Dad would sit quietly.  I realized that not only were my parent’s not retaining this information, but each new time the discussion began, it was as if they were learning it for the first time.

The results of the CT Scan reported Squamous Cell Carcinoma. I hoped to minimize the amount of times my Dad was going to have to hear that he had cancer. I called ahead and asked the doctor if she would speak to me after my father’s appointment alone. They call me back and tell me they will not do this. I understand why the doctor insists on this – but don’t like it.

I asked that they make sure the staff knew my Dad had dementia since the first visit is usually from a nurse who does the first screening and asks questions about medications, past surgeries and current conditions. To each question, my Dad just replies “No.” I follow-up by telling her that all the current medical information in the chart is correct. My Dad looks at me and is annoyed that I didn’t back him up on his answers.

When the doctor enters, her first question to my Dad is why were you not seeing a dentist regularly? My Dad replies that “My teeth are straight so why would I see a dentist?” I share with her the history of the last few months and tell her that no less than six weeks ago a doctor had her hands in his mouth trying to investigate my report of slurred speech.  When the doctor starts to check out my Dad, even the touch of the tongue depressor is painful. She let’s us know she will need to do a biopsy and an endoscopy and it will be very uncomfortable.

My Dad sits through the tests, stoically. After the doctor finishes the review, she asks “Are you ready for the icky discussion?”

The doctor tells us that Dad has invasive cancer in his mouth and it’s tethered his tongue. The biopsy will tell us more, but given his age and low weight, treating this cancer will be difficult. We might be able to do radiation and chemotherapy, but most likely he will need a tracheotomy and feeding tube and the oncologist might not even think he is a candidate for either option.

I ask her for her recommendation on how to get my Dad comfortable. She refers us to an oncologist for palliative care to find out how we might get my Dad more comfortable. Heart-Broken.