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Alzheimer’s & Dementia – Through The Eyes of a Caregiver Part X

Getting the PET Scan      

I get the call from the Radiology Office to set up the appointment for the PET Scan.  We had no idea what to expect with this test. When they called, they just told me that the test would take a few hours.  For this appointment, mom still really didn’t know or seem to really care about what was going on.

 

 She was just along for the ride and did whatever she was told to do.  The only time that she got uncomfortable was when she was taken away from me for too long.  The nurse came to the front and asked me to go back to the room where mom was waiting. Apparently, she kept asking the nurse where I was.  So they let me sit with her until it was time for her to be taken in for the actual testing.

 

PET Scan Done, Now The Wait For The Oncologist

So many things run through your mind after you have all these tests done.  Then you have to wait several days or weeks before you see the doctor to get the “official” word.  We already knew what the results were going to be.

 

Mom had lost some weight over the past several months for no obvious reason.  Talking about it, we sort of assumed it was part of the aging process and Alzheimer’s.  We never dreamed it would be cancer. Cancer had never entered our minds. Cancer had not even been mentioned or talked about on my mom’s side of the family as far as I knew.

 

Preparing For The Oncologist Appointment

My nerves are on edge as we prepare to go to mom’s oncologist appointment.  Mom knows we are going to a doctor’s appointment and I told her it’s for an oncologist.  With her Alzheimer’s I don’t think she realizes or understands what’s going on. I guess that’s a good thing in a way.

 

My heart is breaking for my mom.  I’m torn between trying to explain what is going on to see if she will understand or just letting it go.  I know if I try and explain it to her, she’s going to forget everything I tell her anyway. Am I a terrible person for not trying to explain it to her?  All of this is racing through my mind.

 

The Answers & Reality     

We arrive and the normal routine of filling out pages and pages of new patient forms.  All that fun stuff. Too bad you can’t just bring printed out sheets of all that same information and hand it to them.  Better yet, these doctors could share all this information! Would save a lot of time and paper. Novel idea but I guess that’s too easy.  That’s my rant on that subject.

 

After getting called back to see the doctor, it wasn’t long before he came in.  Nice guy. He gave us the results of the PET Scan of which we already knew were going to be.  Mom had Adenocarcinoma. A fancy name for cancer, right?

 

The Details

This was all strange to me.  She was diagnosed with Pancreatic Cancer that had metastasized to her liver, lungs, and thyroid.  This type of cancer originates in the pancreas. However, the PET Scan showed no markers at all in the pancreas.  I am definitely not a doctor so I have no clue how that works. I still don’t understand how someone can be diagnosed with pancreatic cancer when it didn’t show up in that organ.  Anyway, that was her diagnosis.

 

As the doctor was talking to my mom with this information, she was just smiling and saying, “ok”.  She had no clue what he was telling her. So then the question came up about chemo so we asked to have a few minutes to discuss the situation.  So the doctor left us alone for a little bit so that we could help mom understand what was going on so that she could decide what she wanted to do about chemo.

 

Making Decisions

Rick and I did our best to make sure mom understood what was happening.  We wanted to make sure that she knew and understood that she had cancer. I wanted to be sure that she understood what the doctor told her about taking chemo. Chemo would only prolong or extend her life maybe 6 months to a year longer.  Chemo was not going to cure or rid her of cancer.

 

Without chemo, the doctor gave her 4 to 6 months.  I expected that considering she didn’t weigh but about 95 pounds soaking wet.  She bluntly said that she did not want chemo. She went on to say that dad had told her to NEVER take chemo.  He had passed away in 2010 from cancer and he did take chemo. Chemo did drain the life out of him. We asked her over and over again.  She just repeated that dad told her to never take chemo so she was definitely not going to take chemo. So that was that! Her mind was made up.  

 

Snap Decision

When the doctor returned we let him know what had been decided.  He then advised us that we would no longer need to return to his office.  He prescribed mom some pain and nausea medications. We asked him if she just went back to her regular doctor or what and that’s when he brought up hospice care.  I knew nothing about hospice care except for my dad being sent to a facility for a day and a half before he passed away.

 

The doctor said it could be set up for them to come to your home or for mom to go to a facility.  My first reflex reaction was, NO! Mom is going to stay at home. There was no way I could send my mom to some facility.  I just couldn’t live with myself. My dad would not want that. I needed to take care of my mom the best I could. So the doctor told us that he would contact mom’s primary care physician and let him know and they would set up hospice.

 

Whirlwind of Events

Leaving the doctor’s office, a million things are running through my mind.  I knew I had to give my daughters, my mom’s granddaughters the news. One of my daughters lives locally, but the other one lives out of state.  She and her husband are in the Air Force so they move around every 4 years or so. On the way home from the doctor’s office, we stopped to grab a bite to eat.  

 

After we placed our order, I went ahead and called my daughter that lives out of state. She knew we were going to the oncologist’s office, so she’s expecting my call.

 

I got that one daughter filled in and we ate our lunch and headed home.  Before we went home, we stopped by the office where my other daughter works and gave her the news as well.  It’s a lot harder telling someone bad news in person than it is on the phone.

 

After we left my daughter’s office to head home, I called my mom’s primary care doctor.  He is a super nice guy. He had given me his cell phone number several visits back when all of this started and told me I could call him if I needed anything.  Not many doctors will do that! Anyway, I wanted to call and let him know that the oncologist was going to be calling him about getting mom put on hospice and to see if I needed to do anything.  

 

Things Started Moving Fast!

When I was calling mom’s doctor, I figured I would be leaving a voicemail message with him being a doctor and busy.  To my surprise, he answered the phone! So I told him about the results, the visit with the oncologist and that he was going to be contacted about getting mom put on hospice.  He said no problem and that he would take care of it. As usual told me to call him if I needed anything.

It wasn’t 20-25 minutes later, I get a phone call from a lady from hospice.  She’s an intake coordinator and wants to come over and get mom set up for their services.  Now that’s SERVICE! I couldn’t believe it. All in one day! Wow! My mom’s doctor must have some pull!  Well, come to find out, my mom’s doctor is the Medical Director for that particular Hospice company. Well, I guess when you get a call from the Medical Director to go do an intake, I guess you get moving!

 

 

Making Adjustments

Within an hour and a half of getting home from the oncologist, we had a representative from hospice in our living room filling us with information on what to expect from here on out.  I have to tell you that my husband and I were in total awe! We had no idea what all hospice did.

By the next couple of days we had a hospital bed, an oxygen tank, ensure protein drinks, and many other things delivered to our home.  On top of all of that, we had a schedule of people that were going to regularly visit our home to help care for mom. A nurse, social worker, which was for all of us in the home, a chaplain if we wanted as well.  A CNA was scheduled to come 3 times per week to bathe and clean mom up. And with the stages of Alzheimer’s/Dementia that mom was in, getting her to bath was an uphill battle.

 

Routine Changes

With hospice workers in and out throughout the week came changes in all of our daily routines.  Not just to mom’s but mine as well. Since the CNA was the person we saw the most, three times per week, we needed to work with her schedule as well.  She traveled around to other patients over about 3 counties. She worked hard to get us on a regular time that fit good for us as well.

 

The nurse visited once per week and that was about a 45-minute visit.  They checked vitals and asked about any changes or problems and so on. The social worker and chaplain made monthly visits.  They are all an amazing group of people and do an amazing job. Mom’s CNA was the one we saw the most and the only one that didn’t leave the company during our time with them.  She became a very good friend and mom loved her dearly. We all loved her dearly.

Take Care!

 

 

 

 

 

 

 

 

 

 

 

Be Well!

 

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