My mom has been on hospice for about 8 months now. It's funny in a way. She was referred for hospice mostly for pain management, was admitted due to congestive heart failure, and then found out she has lung cancer - which is not even part of her official diagnosis (because she didn't want to have a biopsy, which is required for a formal diagnosis).
It took some convincing for her to talk to the hospice company. She told me that everyone she knew who was on hospice died not long after being admitted to the program. I explained that it was because they went on hospice too late - and that many lived years while on hospice.
She agreed to discuss it with them and then agreed that it was a good idea.
It's been a huge God-send... for many reasons. There are some practical reasons - free pull-ups, wipes, gloves and other items needed for the latest years. Some of her meds are free, too.
No doctor appointments... at least for us. I don't know about all hospice companies, but ours has one doctor, so all of her care is managed by one doctor and very caring, knowledgeable nurses. After going to probably about ten different doctors for YEARS, this has been nice.
Relationships with the aforementioned nurses, plus aides, social workers and chaplains are a big bonus. All have been amazing. I can say they are truly becoming friends. I know I can rely on them to answer questions, provide support, and do many other aspects of care that go above and beyond what many in those fields are able to do.
So I have a great support team for this very rough time of life. What I didn't expect was just how much of a roller coaster it is.
In the beginning, even though there was never a doubt that hospice was the right call, sometimes I wondered if she actually needed it. Other than no longer being able to drive due to the pain meds, she was still very independent. She was able to cook, go to church, play dominoes with her friends every week and host family functions (with a little help, of course).
When it came time for her first re-certification, I reminded her not to lie, but also not to gloss over how she was doing. She has always tended to downplay her symptoms and her pain. Because I live with her, when she went to a doctor's appointment and reported her pain as a 4 out of 10, I knew it was actually at least a 6 or 7. She wouldn't mention very relevant symptoms. I was a little nervous that she would do that but she re-certified without any issues.
However, it wasn't that long after that things started to change. She became less independent. During that time, it was very difficult for me because I wanted to keep her safe when she still wanted to go and do everything she used to. Things like cooking became "discussions" (fights) because after watching her come close to getting hurt or catching something on fire from the gas stove, I had to insist she stop cooking.
Sometimes I wonder if that was the right thing. So many decisions were debated - both during the heat of the situation (no pun intended) or afterward. I just wanted to keep her safe but I wish sometimes that I was better at trying to convince her that relying on someone else to help didn't mean she still wasn't strong or capable - it was simply the best thing for the time.
The decline was very up and down - with more swings than I had anticipated. Several times, she has been completely unresponsive. I would call and get a nurse to come over and check her out, ask the social worker and chaplain if they could come, and share what was going on with friends and family. We would start thinking about where we would put items like a hospital bed and we even ordered one once.
Each time, she just popped out of it. The first time was especially remarkable. She went from unresponsive to a few hours later walking out of her bedroom after her nurse came to check on her. (That was the time I got to cancel the hospital bed.) Those who had worked in hospice for years said they had never seen anything like it. I attribute it to her strength, stubbornness/independent nature, and the prayers of many of her (and my) friends.
After each episode, everything went back to "normal" (whatever that is). There might be a few more things she had a difficult time doing by herself, but overall, she was back to being able to go and do all she had done before.
This latest time was different. Though I knew it was different, having watched her intently for hours during each time before, there was still the hope that she would bounce back. Her care team agreed with me. There were aspects of being closer to the end of her life than had happened before - more episodes of low oxygen, alarming blood pressure readings, and though she was still breathing at a normal rate, it was just... not... the same.
I had a feeling this was the beginning of the end.
That happened this past Tuesday (it's now 1:35 AM on Thursday). We all tried to explain it away. It was easy to attribute it to doing too much the prior few days. On Saturday, she went with my brother and future sister-in-law to pick up her old sewing machine from a repairman whose shop took over an hour and a half to get there and back.
On Sunday, she visited a new church. This was the first time she was reliant on oxygen beyond sleeping or sitting still; the first time she had to use it outside of the house. Monday, she played dominoes with friends she has known for decades at the home of one of the group's members who lived over an hour away round-trip.
It was a lot to do for someone in her condition and could have easily explained where she was physically.
But like I mentioned before, in my heart I knew it was different. The subsequent days have proved it.
We ordered a hospital bed, a Hoya lift, a bedside table from hospice.. The hospice nurse changed the frequency of her visits from twice a week to every day. Some meds were changed and others were added.
And for the first time, I was brave enough to ask what to expect. I knew it was time to know.
My nurse brought a wonderful little book that explained what typically happens with people who are naturally progressing through disease- or age-related decline called "Gone From My Sight: The Dying Experience," by Barbara Karnes. It's an easy read, only 14 pages, and is based on research as well as experience.
In it, I found out that there are parts of the end of someone's life that someone wouldn't know about unless they've experienced it themselves with a loved one or have learned about it from someone who has. One is seeing people who have gone before.
Yesterday, my mom saw my dad, who passed away several years ago. Then last night in the wee hours of the morning, she saw a woman standing behind me. She told me that I "couldn't go where she was going." Then she saw a man in another part of the room and said the same thing about him.
If that had happened without having heard about it before, I would have freaked out. But I am taking it as just one sign that she's getting closer to heaven than she is here.
She also had a very vivid dream yesterday. I won't go into the whole thing, but it turned out that she went into a very long tunnel towards a light. On the other side of the light were the pearly gates. She remarked that they weren't like she had always imagined - that they weren't made of pearls like she thought.
We chuckled about that.
Knowing what is typical helps on many levels, but even knowing this is what most people in her stage of life experience still doesn't help emotionally.
Like many mother/daughter relationships, we've gone through different times where we were best friends, where we were more distant, where we've fought like siblings, and where we've shared everything.
Currently, she is one of my best friends. I can tell her almost everything going on in my life. I ask her advice and truly know how amazing she is and the wisdom she can offer (totally unlike my teenage and young adult years when I "knew everything"). I rely on her, and she relies on me.
There has been a role reversal. I am her caregiver now. I help her get dressed, remind her to take her meds and brush her teeth, and schedule those who help take care of her. The transition was difficult for both of us for a long time but eventually we accepted this is just what happens with most people in this age bracket.
But one difference is that I live with her. She and my dad took me in when I had a major life event that wrecked my world. This allowed me the ability to pursue my lifelong dream of becoming a professional photographer and writer. Though it's not unusual for a mother and daughter like us to live together, usually it's the daughter whose home they live in. That adds a layer that makes our practical relationship different than other mother/daughter relationships.
I'm writing this while sitting in her bed with her. She felt good enough to sleep in her bed instead of the hospital bed that we finally got - and I wanted to sleep with her, stay with her, be right beside her in case she needed me.
And she has. She has woken up a lot through the night. She sees people I can't see. She has very vivid dreams that she needs to talk about. She needs encouragement to drink when I know her mouth is dry. Though she can still walk for very short distances occasionally, it's definitely not safe for her to get out of bed by herself.
I'm incredibly thankful that I get to be here, with her, right now. The sleep I'm losing is more than worth it... The sodium deprivation from copious amounts of crying is more than worth it... The fact that I am committed to not going anywhere until she either gets much, much better or she goes to heaven is more than worth it...
...because that way I don't have to depend on simply hoping the times I can visit her, she is lucid.
I have recorded her telling stories about her past. I get to hear her quips, which is a huge part of her witty, hilarious personality. We got to play a game of Five Crowns with her last night - and somehow, even being extremely confused and literally cross-eyed with exhaustion, she still ended up not only winning, but having an unheard of zero score after the five hands we played.
Mostly, I have gotten to see her smile - and laugh. Even though at times we're both scared, even though we both have cried (sometimes even ugly cried), even though we have each expressed how much we'll miss the other, I'm just so thankful.
She's an amazing, wonderful, strong woman. She's been through a lot in her life. She's had really, really low lows and many high highs. She's very, very confident that she's going to heaven and looks forward to seeing my Dad, many of her friends and family who have gone on before her, and Jesus. She is also looking forward to finally being healed and whole after decades of ongoing physical issues, some severe. Her right arm, the one that has bothered her since she first broke it when she was six-years-old (for over 80 years), the one that had two previous elbow replacements before the huge surgeries where she got a shoulder/humerus/elbow replacement last year, the one she was never able to rehab well enough to work correctly - it will finally be healed!
I have a photo of the last time she ever got to ride a roller coaster, which she loved. I was with her. We never buy the photos they try to hard to get you to pay too much for at amusement parks but this time was different. I was pretty sure it would be her last time - and it was.
I'm proud to be her daughter and I'm so very thankful that, as hard as it has been and is currently, I've gotten to ride this roller coaster with her, too.
Mom, I love you so much. Even though I'm going to miss you TERRIBLY, I know you'll be okay. In fact, you'll be better than okay.
And I will be too, mostly thanks to you.
