Good to know:

·     After a person dies at home, you call the primary care doctor to inform her/him.

·     Then you call Hospice, to alert the Hospice doctor and the Hospice team.

·     Then you find a crematorium or funeral home to take the body away. We used Greenwich Village Funeral Home. They came after four hours and were respectful and efficient. They prepared the death certificates for us and had them ready after four days. But we still have no ashes after 7 days. This is not cool, IMHO. (I don’t want the ashes, but my daughter does.)

·     Then you clean out the house of the deceased and try to put it on the market. (I’m leaving the furniture so that the apartment shows better. All of my mother’s possessions went to a holiday fair to benefit a church that we love.) We had help from close friends and family and we worked like dogs, through dust, to get this job done.

·     Then, daily, you answer many emails and calls from people that knew the deceased (even if you don’t) and you are polite and comforting and you describe the end in as much or little detail as you see fits the person calling.

·     In your down time, when you are not working, you try to process the reality of the fact that your parent is dead.

·     You call your therapist and see if you can be seen. My therapist was able to make time for me (suddenly, thankfully) and I will see her next week

·     You may call your spiritual care counselor to touch base with that person. With VNS/Hospice, you get one session. I also have appointment with my mother’s spiritual care counselor for next week.

·     You get legal counsel. I have an appointment with OUR attorney for next week to transfer funds, accounts, deeds, etc. I have no idea how to do this myself. I hope that he will help me.

·     You ask your spouse/partner to call the bank, SS, insurance companies, etc. and deal with being on hold for four days, only to be told that the funeral home has already notified them of your parent’s passing.

Morphine

My mother survived my weekend away…and then some. She was fine. It was amazing how she knew that I was sneaking away and that she could do something to sabotage my trip-but she was unsuccessful this time. We went anyway! All weekend, she ruminated about how I was getting married and didn’t want her at my wedding and/or that Elsa was getting married and that she had no dress or gift. But it was fine.

We came back. We have visited and even dined, many times.

A few weeks ago, the head hospice nurse called and expressed his feelings that my mother was straining and needed morphine. He asked me to speak to Alice about it. I did, and Alice did not feel it was time. We both deferred to her professional opinions. Several days later, Alice agreed that it was time, and she revealed to Elsa that part of her hesitation was caused by a previous lethal experience with morphine and her patient. At first, my mother was receiving morphine every other day or so, a half of the doctor’s dose. Now, I believe that she gets it every day, and maybe sometimes more than once a day.

We were all there for a big family dinner on Friday. My mother was up and at the table, alert, awake and looking around. It was amazing. 

But later, she was exhausted and went to bed and was fitful as she tried to sleep. She was moaning and tossing as much as she can, and I was devastated for her, believing that she was suffering. She had a frightened, hollow look in her eyes and seemed to be presenting only an outer shell of the person she has been as long as I have known her.

It was awful, and I was very sad. I left thinking that life, in the end, is cruel to those who live too long.

I visited again two days later. Although my mother was sitting up in a wheel chair, she had that gone, vacant look, garbled speech and unintelligible reactions to my conversation with Alice. How awful for her not to be heard and understood!

When I left, she was laboring to rest, even after morphine.

Today Alice tells me she slept deeply most of the day, but she also ate quite a bit.

I feel we are in a holding pattern: she’s steady, but declining a bit every day. We have no idea when this will end, and part of us hopes it’s soon, to end her suffering, and part of us dreads the day when there will no longer be opportunities to say anything more. And when the end comes, it will be final-no turning back, no, “But, wait!”

I feel actually peaceful. My anger has long dissipated and I understand that for many years, my mother has not been herself, her good/best self, that she once was. We have had a rough many years and I feel as though I have been put through the ringer on many occasions, but that’s ok. As long as I don’t repeat the pattern, I can accept how it’s been for us.

I only hope the morphine is keeping her from feeling too much pain.

What's has been happening for us…

What’s been happening?

My fellow blogger, MY DEMENTED MOM, has not posted since the death of her mother. While I completely understand this, I have to admit, I am curious about what is happening for her and for her family at this time.

In our family, we have been in a holding stage, so to speak. My mother is still able to get up each day, she talks, she sits on her balcony and watches the world, she eats, she talks on the phone, she complains and she observes. She cannot walk and she laments this fact all day, every day.

My mother is in Hospice care. She has a head Hospice nurse who visits weekly. She has a Hospice social worker and a Hospice spiritual care counselor who visit often as well. My mother has a sister and two cousins who contact her frequently. And she also has a devoted nurse who lives with her and sub nurses who care for her when her nurse is off duty. In short, although she is in Hospice, she is very lucky. She is home. She has quality care. She has company. She is loved.

My mother is sometimes completely coherent, and, is at other times, the opposite. Alice says that they have been in Amsterdam for the past two days. Amsterdam? On the flight home, my mother tried to disembark the plane and climb out of her bed in her sleep.

A sub nurse, Rhoda, texted me today, worried that my mom was not okay. The Hospice nurse was equally concerned that her breathing was strained during his visit and relayed to me that she did not look good. When Alice returned, she reported that my mother was vomiting-and this is dangerous because of her difficulty breathing. “I’m worried that she could aspirate,” Alice explained.

Of course this would happen now. My mom has been fine for weeks and months, but tomorrow I am flying out of town for four days for the wedding of a dear friend’s daughter. Once again, I feel trapped between the obligation to support my dear friend at a special time for her family, one whom I have not seen for 20 years,  AND my obligation to be ‘here’ for my ailing mother, who has been failing for 30 years.

I thought I would visit tonight, a quick one before my flight. But I had laundry and packing to do, and since she was sleeping anyway after her terrible day, I decided to stay home and prep for my trip.

I hope this wasn’t a bad decision and I hope my mother survives this weekend.

Four Birds on a Tree Branch

Yesterday was a low talking day for my mother. Her voice was not strong and she seemed to strain for breath.

Earlier, on the phone, she has asked me to type up clarification about “this new program I’m in,” to help her remember what hospice is, what it does and what is different for her.

It’s hard to know how honest to be with her about her condition. When I explained hospice to her, I called it ‘palliative care’ because hospice has such a strong association with dying. And, really, hospice is about the care of a patient, helping to make him or her comfortable during terminal illness. Hospice is not a death sentence, it’s a pledge to care and to comfort.

My mother is either forgetting the seriousness of her conditions or is in denial about her prognoses. It’s likely that her bewilderment is a combination of both.

Yesterday she remarked, as she often does, that she’s tired of being sick and is anxious to get better.

Later, in the same conversation, she looked out towards the sky and told us that she envisions four birds on a tree bark (we assume she meant branch) waiting to fall.

“Evelyn was first, so that’s minus one, and now I am waiting to fall,” she said.

Here is a perfect example of how her brain is operating: my mother can make a beautiful analogy like this, but have it mixed up. Evelyn was the first of her cousins to become ill, but she is alive and living well at home with an aide.

Still, I am happy to have this lovely way to describe her circumstances to her. I wonder if she will remember the picture in her mind of the four birds on a branch.

I LOVE Hospice!

So, it started today, officially: Hospice. I got a call this morning that our new social worker was coming to meet my mother today at 1. I arranged to be there.

Shortly after Guay’s visit, Charles, our new head nurse arrived. Both are amazingly interesting, attentive, caring and, well… cool people. Guay is thin and stylishly dressed; and she was clear, honest and direct with my mother. Charles is tall, lanky and longhaired. He was great: very respectful, very polite and very gentlemanly.

Guay told me that she could see that my mother is clearly demented and living someplace in the past. She questioned her and was gentle, but responded honestly to my mother’s concerns about how she is being treated by Alice and me. Guay said, “You are weaker now than you were before, and less able to do what you used to do. I can tell that you were an independent woman, and I understand that this must be very hard for you.” Later Guay told me that she is here as much for Alice and for me as for my mother. Yay! AND, she offered to call my aunt for me and speak to her about the Hospice program to address the resistance to Hospice that I am feeling from her and from my mother’s other relatives.

Charles all but kissed my mother’s hand upon meeting her. He was very attentive and polite, and my mother was honored.  He gently checked her physically, carefully asking permission before he listened to her breathe, took her blood pressure and examined her feet, among other things.

Charles will visit about once each week. He will be in touch with Alice and with my mother’s doctor about her medications, her sleep and her progress. We are to call Hospice if we have ANY questions or concerns, any time of day or night.

The Hospice team meets every week and every other week they will discuss my mother’s case. She will be cared for by a neighborhood team: the social worker, the nurse and the spiritual care counselor.

I love the team approach, I love the respectful demeanor of the staff and I love the feeling support that I now have.

We are in HOSPICE now…

The HOSPICE team came today to enroll my mother. The team consisted of two nurses, Olong and Nancy . They were pleasant and carried huge backpacks. When I arrived, everyone was sitting around a small table in my mother’s living room. Nancy and Olong were describing the program and benefits, and explaining what would be different, insurance-wise and medication-wise with Hospice. Apparently all future medications are dispensed through Hospice, which may include some changes. My mother was receptive to the idea but was confused about ‘what would be different’ with “palliative care.” Both nurses were careful to use terms like ‘comfort care’ and ‘stay at home care’ rather than ‘end of life’ care. The team is reachable 24 hours a day and will supply us with an emergency kit to deal with anything that may come up. I asked about falls and bone breaks. The team can even treat that at home without surgery or resetting the bone. Amazing.

The nurses left a pamphlet of emergency, WHAT TO DO’s. From this I learned about some common problems and behaviors at the end of life. Some of the situations mentioned are: constant fidgeting and moaning, complaints of pain, acting cranky and moody, having difficutly breathing, making strange noises while breathing, having a decreased appetite, refusing to eat, experiencing nausea and vomiting, no longer urinating or having bowel movements, anxiety, feeling confused and agitated, feeling restless (and talking about needing to go somewhere, having to leave, and believing someone is waiting for them,) saying hurtful things, hallucinations (!) acting as if in a dream world, acting tired, sleeping more, having difficulty waking up, napping, staying awake all night.

Many of these behaviors mimic dementia, making it all very confusing to know what is going on. Regardless, I think she is in a good place and will be able to stay home no matter what happens.

How do you know when it is time for hospice?

The behavior nurse from VNS, Jolene, called me today to inform me that she believes that it is time for my mother to begin Hospice care. I really don’t know what that would entail, but I agreed to have my mother assessed. I know that Alice does not believe that my mother needs hospice at this time and my gut tells me that it is not yet time. We will see what my mother’s doctor says and we will see what the assessment reveals. Even though we have spoken about this in the past, and Alice warned me that Jolene was going to call, it was still kind of a shock to receive this news today.

I read several great and informative articles about hospice tonight and I will post the links below.

Letting Go, a New Yorker article about hospice and death

A Day of Waiting

Alice told me yesterday that the hospital bed would be delivered today at 1. I knew it would take a substantial amount of time to take down my mother’s existing bed, so Jonathan, my husband, and I thought we’d arrive at her house to begin the process at 12.

Of course, we were delayed and didn’t arrive until 1:15.

Jonathan dismantled the bed and had it tied to the top of our car by 3:30. No hospital bed arrived.

Jonathan left my mother’s house to bring the old bed home to store it. My mother, Maria ( a sub nurse) and I waited.

3:38-no hospital bed. The company closed their offices at 5. I called, got voice mail. I left a message for my rep. She didn’t call back. We heard from no one.

4:30-no hospital bed. No deliveries are allowed at my mother’s house after 6. I began to panic. I called again and spoke to Susan. The bed will arrive between 6 and 9, she informs me. 6 and 9? WHAT? That’s unacceptable! But, my mother has no other bed!

4:45-I left to get to my hair salon before 6:30, (long story). I stopped by the management office at my mother’s building. I informed them of the 6 to 9 window for delivery. This is a ‘big problem,’ Orlando says. I have no idea who he is, but he seems important. I plea. I explain that her bed has gone. We need this new bed. They made an ‘exception’ for my mother, because she’s such a ‘wonderful’ person.

We wait. We wait. We wait.

8:45-text from Alice, “Finally they are here!”

They set it up. The sheets don’t fit. Alice finds something bigger to spread over the mattress. The bed takes up more space than we anticipated. The men help Alice move more stuff out of the way. I should have been there-but I wasn’t. We should have been there.

My mother is sleepy. She gets in her new bed.

Alice calls me and we FaceTime-a first for both my mom and me!