Second day after Mom's death

 It's late, I'm exhausted, and also want to mark the time of the Veil between the worlds being the most thin, with my mother just having crossed. I want to pay her tribute in my tradition, her burial in the Baha'i tradition will be on Wednesday.

So much going on, feeling rather overwhelmed. Went up to funeral home today, did obit that will be on-line through funeral home, went to cemetery to map out best way to tell people how to get there, and picked out the area where Mom would be buried, there were only two choices, so it rather easy. I chose the one that is higher up, with a view of the mountains around Bethlehem, as Mom always liked tree covered mountains, and now they are awash in fall colors. The funeral home, much to Beth & my surprise, gave us a large cold cut platter, so we had a high protein snack there on the benches. Then drove to Doylestown, dropped Beth off to work more on apartment, I went to bank and started finding out more of the process, which includes getting the death certificates (Wednesday), taking her will to the register of wills at courthouse, registering with Social Security for tax purposes. I'm sure there's a guide somewhere, but right now have no idea where to access. 

The bed was moved out of the living room, where it had been moved so she could have the TV muzak on, and that made it seem different. While Beth continued to sort I went and got liquor boxes, because we need smaller ones for heavier things. Still need to find where to donate all the medical supplies, and get the larger donated pieces out of there, plus the few I'm keeping. 

Back home, emails to edit the obit (I'm my mother's daughter, after all!), and send her favorite Baha'i prayer to go on the small cards that get handed out at burials. Also sent her favorite picture to funeral home. 

Stuff to do around house, life goes on. Need to get stuff done. 

First day after Mom's death

 It's been a blur, just non-stop. I went to bed exhausted, and had the option of sleeping for 9 1/2 hours, but woke feeling very rested after only 8 hrs, clearly the stress had been affecting the quality of my sleep. Had the BuxMont service on Zoom while got dressed, ate breakfast. The service was on Samhain, which is a very sacred day for Pagans. It marks a turning of the wheel of the year, accepting that death is a part of life, and then our 'new year' starts November 1.

Stayed on after for coffee hour, with about 9 other people, them giving condolences, asking about the end and how I was coping. I'd asked a friend to meet us at Mom's apartment, and she and Mark moved a bureau to my house. It was one my parents & I had brought back from Nantucket decades ago, and is a happy memory for me. It will now stay in the guest room/study up in the front of the house. Kim & I chatted for too long, considering how much still to be done, giving her the spiritual details of Mom's death.

Then it was back to the apartment, more clearing out. Sorting, decisions. I'm keeping too much, but I'd rather have more and then winnow down later. If it goes now then there is no option.  Mark took a big load to Green Drop. There are so many medical supplies left, especially for the urinary catheter, plus diapers and other stuff. And neither hospice nor the previous agency will take them back, boxes of supplies. Hoping her bed will be taken down tomorrow by maintenance, and then it will look as if we're really making progress. 

I'm calm except when telling people or talking about her death. Otherwise, pretty normal. It's hard to believe that it was only about 30 hours ago, it feels more distant. Made a couple phone calls to her friends.

So far, I only have one regret. I left the room while the funeral home guy loaded her on the stretcher, Beth stayed in the room. I didn't want to see her gaunt body, the jutting out of her bones, barely covered by skin, didn't want to be reminded of the bed sores that continued to form despite moving her every few hours. When he called me back to the living room she was all packaged up, with a navy corduroy body bag zipped up, only her face and neck showing. 'Go ahead', he urged me, 'say goodbye to your Mom, it's ok'. I know he was being kind, but I really didn't want to do anything. But, feeling as if it was the 'right' thing to do I kissed her on the cheek. It was cold, like kissing slightly moist wax, since I'd put cream on her face shortly before she died. When I'd held her hand after she died it was still warm, but now she was totally cold and stiff. I instantly regretted the gesture.

Home, now have to find a place to put all this stuff. Spice's only real vice is his love of chewing on plastic, so anything in bags has to be out of reach. I went to the front closet and noticed that two of the shelves, which are piled high, were unstable, really unstable. Had to grab bins from garage, and managed to get all the breakables off just before three shelves came crashing down. The free side of the shelves had become buckled, pulling away, and the pegs that held the shelves weren't long enough to compensate. Outside of irritation, and panic at a lot of breakables being threatened, my main feeling was 'This is NOT on the schedule.'

Ate a yummy dinner Mark prepared, and then went to work. Email to nursing director with multiple questions, email to chaplain there with Mom's obituary that she wrote, email to billing gal to tell her Mom had died and ask for a revised October statement before I submit to the long term care insurance. Then looking up who will pick up furniture from my storage so the couple of pieces I want from Mom's can fit in, discovering after much searching that no one is taking china cabinets, and that's the piece that I most want out, and is heavy as hell to move. That all took time, my older computer, which I prefer for typing on as it's larger, is acting up and taking too long. After a few more emails I wrote the obit for Facebook.

There is still so much to be done. Tomorrow have to drive to Bethlehem to meet with funeral director, not entirely sure why, but apparently they won't start digging the grave until after I meet with him. Taking the ring and spoon (story later) to be in the casket, and know now I will not kiss her body. I was never told to have joint checking, I'm PoA on her account, but it should have been joint (why did no one tell me?), so need to get to bank. Spice has a URI, need to get him to vet tomorrow. Need to call her last living college friend, need to call her cousins that she wasn't all that close to, but she wanted them to know. Need to go to jewelers and have her favorite sapphire ring checked to be sure the stones are all ok, because I want to wear it when she is buried, but won't risk it being on my hand until sure the stones are ok, so have been wearing on a chain. Want to get a couple more pictures printed out. Need to get all the furniture cleared out and arrange pick up for donation, it looks as if they are already several days out for scheduling, and I'll have to pay for the apartment until everything is gone.

Telling myself that after the burial and clearing out her apartment it will slow down, I'll be able to breathe. Also know that it will be the quiet moments then that it will really hit me, that she's really gone. I am so glad that she is at peace, and out of her tortured body, and the weeks we had at the end of her life were very special.

Mom died today

 I got there a little after 11:00, earlier than usual. Her friend had told me she was the same, but when I got there things had clearly changed. Her respirations were still about 40/minute, but her feet were cold, her legs cool, despite her core being very hot. Asked for an axillary temperature, it was 102.7, which equals 103.7 orally. I knew it wouldn't be long. 

Spoke with hospice nurse via phone, main issue was the Ativan was about to run out, both Ativan and morphine were coming in prefilled syringes. Told her the above, asked her to find more of the drugs, as wanted her to be comfortable. 

Beth was coming over in early afternoon to help get more things ready to be taken out to donation. I said to Mom 'If you want to die with only me with you it's going to have to be soon.' My mother has always been reliant on me in serious situations, and even more as I got older. She wouldn't have asked me to be without support, but I knew she would prefer to die with only me with her. That was what I wanted as well, because I didn't want the distraction of another person, or other conversation, I wanted to be fully present with her in those last minutes. 

Clearly there was a part of her that was still aware and she also wanted it to be just the two of us. I was a few feet away when I suddenly heard her breathing change, she got the 'mucus in the throat' sound. I rushed over, expecting that to continue for a few hours, then it cleared, but her breathing was different, and then there were a couple pauses. I grabbed the papers with the Baha'i end-of-life prayers, and began reading them, crying, because it was obvious this was the end. That said, this phase usually lasts for a couple hours. My mother decided, however, that she was done. Within 90 seconds of her rattling beginning and ending, and after only a two 10 second apneic (no breathing) periods she took her last breath as the pulsing stopped in her thin neck, and she was dead. It was 1:19 pm. 

I sat there for over 10 mins, crying & talking to her, because you never have those moments immediately after death again, and there isn't anyone who needs to know urgently, because she was still going to be dead in 10 or 15 minutes. I wasn't sobbing or hysterical, not only because that isn't me, but because I didn't think that her spirit left then, this was just her shell, and didn't look like her with the sunken eyes, gapping mouth, gaunt features, shriveled skin. This wasn't my Mom, it was just the container that was left.

I called her friend Kathy first, then the hospice nurse, then pushed the button for staff. Tears rolling down my face, accepting of their sympathy after they confirmed the obvious, then they left me alone with her again.

Beth arrived to sit with me, the hospice nurse arrived and made the official pronouncement. She asked me questions, then more questions, seemed fascinated by my mother's life story. Maybe this is one of the perks of the job, or maybe she was just letting me talk about my mom, or maybe she got paid more if she was there a certain amount of time. But I happily told Mom's story, because I wanted to remember her the way she was, not how she looked these last days. Medically I know that she died fairly quickly for stopping eating & drinking, but it felt like a lot longer sitting next to her and watching. It was, and is, a huge comfort to know that this was what she wanted, that she was no longer trapped in this body which was such a hindrance. It is also a huge comfort to know that at every point I advocated for her and made sure all her wishes were followed. My Mom got the death she wanted, and that only happens for a fairly small number of people. 

It took another few hours before the man came from the funeral home, and I'll address my one huge mistake in a post to come. 

It's a couple weeks later that I'm finishing this post, because by the time I got home it was after 8:00 and, unsurprisingly, I was exhausted. There were a lot of tears, but not the relief of a good sobbing. I just don't know how to feel. 

Mom, 11th post

 And so it continues….

Arrived about 12:30 after a freezer emergency at home made me late. Walked in to find Mom breathing 32/min, her fingers & toes warm but cyanotic, her body very hot. These are, typically, signs of impending death: rapid shallow breaths, bluish extremities from poor circulation, and elevated body temperature which sometimes hits 104. I sent out text messages saying that the end was near, silenced my phone, read Baha’i prayers to her, recounted memories, made sure her favorite music was on, read parts of other favorite books. I put the eye gel in, sprayed a mouth moisturizer, put Vaseline on her lips, and waited.

 Just to make things a little more interesting, Mom has developed PUBS: Purple Urine Bag Syndrome. Yeah, I’d never heard of it, either. Her friend Kathy, who comes in the morning, had asked me yesterday, I’d said it was probably the plastic reaction to the change in her urine and increased bacteria. Turns out essentially that is true, the Cureus on-line abstract says it is very rare phenomenon associated with long-term indwelling catheters, that the color change results from altered metabolism of tryptophan into color pigments by certain bacteria, I had no idea it was a ‘thing’. My mother has generally only developed ‘usual’ medical issues, unlike me, but it appears as she nears death she wanted to be known for at least something weird. Sigh.

 Hospice nurse came about 2:00, agreed with all the above being signs of pending death, except her thermometer only read 98.9, which didn’t make any sense feeling her skin. All Mom’s vital signs were either up or down as one moves towards death: BP down, heart rate & respirations up. She said she didn’t expect Mom to make it through the night, that she would be ‘extremely surprised’ if she didn’t die very soon, but she then threw in the obligatory ‘But, of course, you never know for sure.’ She said morphine regularly, it’s ordered as every hour if needed, that the high rate qualified as respiratory distress. It's a compensatory response as the body slowly goes into shut down, and the lungs gallantly try to correct changes in the body’s chemistry, until they can't anymore.

It's now after 9:00 pm and the only thing that’s changed is Mom is breathing 40 times a minute, the axillary temperature the staff here got was 101.5. Initially I resisted the rectal Tylenol as treatment, because, again, the temperature is a sign, but then figured that since nothing happened in 7hrs without the Tylenol what the heck, might as well. There will be another temperature check soon, but her respirations haven’t changed and she’s still warm.

 So, again, I face the dilemma: should I stay or should I go?

 When believing death was about to happen I was, naturally, crying, and sobbing just exhausts me. It might release chemicals that make you feel better, but I just feel rung out. Despite almost 8.5 hrs of good sleep I’m beat. Stupidly in circumstances which are changing, my pill caddies are empty, the plan was to fill them tonight. And, understandably, it is more than a little tiring to be on edge all day as you watch your frail mother move ever closer to death. Gotta say: this watching your parent die in front of you is not for the fainthearted. (Just because of my health issues I’d already determined that, as a doula, doing vigils was not going to be one of my offerings.)

 As before, I’m going to feel like an ass if I leave and then a couple hours later she dies, but there’s the well-known phenomenon of a parent not dying with a child present, so is she waiting for me to leave? I’ve done a couple trips to the recycling closet with papers, and, being me, have gone to the bathroom repeatedly, but what if those weren’t long enough? And historically she has always wanted me near when she was sick. But what if this not only continues through the night but well into tomorrow? Or longer? I won’t be functioning by then without at least a few hours of decent sleep. And, again, it helps no one if I get sick.

 Just had the temp check, an hour after the Tylenol, and it’s only down half a degree. This makes sense, because the temperature spike isn’t due to an inflammatory issue or bacterial or viral response. But at least it was tried, which made one of the techs happy.

 She’s due for another dose of morphine & Ativan in about 15 minutes, so I’m waiting until about 10:30 and if no change then I head for home, and plan on returning earlier than usual. It’s entirely probable that she will die before I get back, but either she was waiting for me to leave or it falls under the ‘what will be, will be’ category. She wouldn’t want me to get sick. And I've been here for 10 hours, so not a brief time waiting. 

Going to bed.

Mom, 10th post

 Unfortunately, she is the same. Hospice nurse coming every day now, her vitals are the same, her breathing strong & regular. Virtually no urine output (the catheter is still in, so that also means she’s clean). She feels very warm, although her temp is remaining about 98.4, which is a little high for her. While she did clamp down on a mouth swab a little bit ago (mouth breathing, so very dry) that is probably just reflex, as she had no reaction to my putting in the eye gel.

I was up a bit late, and then called the techs at 1:00 am to check on her, which lead to a crying jag until after 2:00 am, so am more tired than would like. Since she is so stable Beth didn’t come, I plan on leaving about 7:00 pm so can get some downtime and go to bed earlier. One of my favorite techs is on tonight, which gives me an extra measure of comfort, because I trust her to call me if there is any change. It doesn’t seem likely, but no way to predict. As noted before, I’m here for large swaths of time and gone for long ones, so if she has any control over when she dies she has a choice of my being present.

 Speaking of the techs, one of the other favorites stopped in at the end of her shift to check on Mom and chat. The techs here are, for the most part, absolutely wonderful, and my mother has been one of their favorites, as mentioned before. But I didn’t realize the extent until the conversation today, when she told me that the nursing director had called a meeting to tell them Mom was going on hospice, and did they feel they could handle the increased load or should she be transferred down to SNF? Apparently all at the meeting said there was no way they wanted her transferred, even if it meant more work for them, that they wanted to take care of her here, where she has been for five years. Gotta tell you, I teared up. They aren’t allowed to accept gifts, on talking with the nursing director yesterday asked her for the full names of the techs and nurses, so that I could write them glowing letters to go into their permanent files. And that was before I knew that they had insisted they would take care of Mom to the end. This, to me, is just incredible, especially in a time when you hear nothing but bad about people at their jobs. Just typing this brings on the tears.

 Today I was better about reading to her, some from a favorite book and several Baha’I prayers. Continued the easy listening or Mozart, which she’d requested years ago. I repeatedly told her I loved her, wanted her to leave this body that no longer served her, talked about family, pets & loved ones who will be waiting to greet her , hoping to let her know she can die and be at peace. Took a break after a while, went back to clearing things out, because it seems stupid not to cope with practicalities.

 There have been a couple rounds of decreasing her stuff, first when she moved to Wesley (then called Heritage Towers), then 5 years ago when she had to move to Personal Care, which is similar to Assisted Living, but fewer nurses. Despite those two rounds it’s amazing the amount of stuff that just accumulates, or wasn’t eliminated before ‘just in case’ she needed again. We’ve been going through some pictures over the years, and her memory was bad enough that a lot ended up getting tossed. Today I went through the drawer where ‘things to grab when going out’ have been stored, and amongst the tissues, emery boards, throat lozenges and Tic-Taks were multiple little plastic bags with pieces of cotton inside. Mom had lots of nosebleeds, so she carried around cotton with Vaseline so she could plug her nose if needed. She hasn’t had one while with me in at least a decade, so had completely forgotten about that little habit. Going through her stuff has been a reminder of how much we accumulate that means nothing after we’re gone and makes me want to do a massive purge. Sadly, by the time there is the time & energy to do that I’ll probably forget my current sage observation.

 Home, Mark had cooked a lovely meal, I cleaned up (and that took a while, because he uses a LOT of cookery & utensils), did my infusion, then a load of wash, just had some play time with Spice.

 It still feels unreal that my mother is dying.

Mom, 9th post

 The hospice RN was getting to Mom's some time after 10:00 am, it was just Beth & me as Mark had to go home overnight to handle things. I did get scant 8 hrs, but in my own bed always is better, plus CPAP, which I am very used to after 9 years.

HRN (Hospice RN) arrived, assessed. While the alternating pressure pad was ordered this morning, her assessment was that it wouldn't make a difference at this point, and would be very disruptive to Mom. She is good about talking to Mom, even though she remains without any response. She put foam pads over the bed sores, observed the scant urine in the bag, noted her warmth. (The residents nagged for the heat, so now that it's in the 70s the apartments are way too warm, even with the heat turned off and fans in the open windows.) After efficiently going over everything with Mom she turned to me and said, 'It could be any time now, even today. Or it could continue like this for a few more days.' I know this, but the tears came anyway. 

Leaving Beth there I went grocery shopping, then to home & unloaded. Had asked the chaplain to send me Mom's favorite picture of herself that was taken there several years ago for ID. Loaded onto a flash, went to Walgreen's and got several copies including some enlargements, which I want to have at the graveside. And it's a great picture. Also got her will out of the safety deposit box, went for gas. I stopped and bought flowers from a farm stand that always pass on the way to Mom's. Several years ago I started buying her flowers regularly, because it made more sense to give her flowers while she was alive. There aren't any bouquets with a lot of yellow, which she prefers, so I pick another bright one with dahlias, which she likes. She won't be able to see them, but I want to keep the area around her as pleasant as possible. As I get into the car it hits me: I'm buying my mother flowers for the last time while she's alive. 

Back in the apartment with Beth, Mom's breathing is unchanged from before. The aides come in and move her, it's supposed to be every 2 hours but is usually closer to every 3, but she is getting moved. We keep the 'easy listening' station she likes on, which masks the sound of her breathing, which is even and regular at 22-24 breaths/min. She looks as comfortable as one can in the circumstances. 

Beth, as previously mentioned, has done a lot of hospice work, and we agree that it doesn't look likely that Mom will deteriorate tonight. The nurse & aides on duty assure me that they will call me if there is any substantial change, so I can rush over. Beth had wondered if she would be better off in SNF (skilled nursing), which is in same building, and is actually where my grandfather, Mom's dad, died in 1984. But that had been her terror, being down there. The times she was there after surgeries or accidents she invariably got put with a demented roommate, or there was one nearby calling out. She made me promise years ago to do anything necessary to keep her out of there, and I'm keeping my promise. Additionally, she is a favorite on the floor. She's always been friendly with the staff, memorizing their names, and she was very easy for the first 4 years. Many of them stop in to see her now before or after their shifts, and tell me how much they love her there in personal care. 

So, after 10 hours, except for the errands, we leave.

Let's see what tomorrow brings.

Mom, 8th post

 

Yesterday was a whirlwind, and seemed very long.

 I got here late, about 1:15, the hospice LPN who does the washing arrived a short time later. Mom reacted when I told her I was here, giving a sort-of smile, could squeeze hands, would swallow if a straw or medicine was put in her mouth. All medicine had been changed to liquid, off everything except morphine for pain/difficulty breathing, or Ativan for anxiety/restlessness. It is known that a person is more able to die if they are comfortable, my feeling is that pain ties the soul to the body, keeping it from releasing. Different words, same concept.

 I woke Tuesday feeling much better after Aunt Beth tapped me out, and I had a few hours at home and full night’s sleep. Do not try to watch your mother on your own, even if you don’t have medical issues.

 The LPN was most of the way through the sponge bath when she said ‘Uhh, there’s a problem…’ My mother is pretty much skin & bones, and the lumbar part of spine had a dark red 2” diameter bed sore, with more on the left buttock. Those had been clear 2 days before, I’d seen myself, and her friend Kathy had looked yesterday and there was nothing. Bed sores are skin breakdown due to lack of circulation, and you get them on pressure points, so the back & buttocks are often the first ones, the heels & elbows can also easily get them as well. If left untreated they get worse, the skin and tissue breaks down and it becomes a decubitus ulcer. I thought back to the previous day, Tuesday, when Mom kept partially sitting up in that mid-sit-up position, and now realize she was trying to get the pressure off that area. I’m horrified, never thought of it.

 There was a blur of repositioning, bracing, pictures being sent to the RN, texting back & forth. She said that if the bedsores had formed that quickly it was a strong sign that the end was very near. She would come in the morning, Weds, with foam pads to take the pressure off. Mom was still swallowing when given her 4:00 meds, but by the time it was 7:00 she no longer could swallow, no squeeze of hand, no response when I put gel in her eyes to keep them from drying out, which means she crossed from semi-conscious to unconscious in those 3 hours.

 I was torn about staying. Mark had to go home for overnight, so if Aunt Beth was going to come over I’d have to drive 20 mins, get her, drive 20 mins back, then 20 mins back home, and then a few hours later go & pick her up. I was exhausted, and gave myself the whole caregiver speech, which boils down to ‘if you don’t take care of yourself you can’t take care of anyone else’. The frequent analogy has become the instructions on airplanes that ‘in case of emergency put the mask on your own face first before helping others’. But if she was going downhill, if she was going to die that night, shouldn’t I stay? But if I get sick it won’t do either of us any good. Believe in a previous post it says that Mom & I talked about this, she said she was fine dying alone, didn’t expect me to be sleeping over to be here when she died.

 So here’s the conundrum: my mother would forgive me if I left and she died, but could I forgive myself?

 She had gone downhill so quickly, and it happens quietly. If she continued to decline at that rate then it was entirely possible she would die over night. BUT this could also go on for several days, it usually does, where they are unconscious, unresponsive, but the body is, somehow, still going. Our bodies are designed to live, and they will do just that even when malnourished & dehydrated. If I went home and she died a few hours later I’d be castigating myself for not having stayed, but if she didn’t I’d probably get sick. With chronic health issues your body dictates what you will do, not your mind.

 My compromise was to take a nap in her chair for a couple hours, and then reassess at 9:30. If she was worse, I’d stay, if she was the same I’d go home.

 Here’s the part where you may stop reading, so just be forewarned, because if you think spirits and communication are ‘WooWoo’ stuff this is not going to sit well. But, it’s my blog and I get to write what I want. And for some people this is going to be very helpful.

 I got myself in a meditative state that I’ve rarely been able to achieve, between the worlds. I imaged walking with my mother to a river’s edge, where the shore on the opposite side could be seen. There were a lot of people there, and I recognized some of them: her Aunt Laura after whom I’m named, her husband, old college friends, other friends and relatives who had passed, and a lot of people whose faces weren’t distinct. And I tried to get my Mom’s soul to recognize that crossing that river wasn’t scary, and to look at all those loved faces who were waiting on the other side for her, waiting to welcome her. But she still held back from crossing.

 Woke with a start, feeling dramatically refreshed, which surprised me considering the above. Mom was the same. The tech & I figured out that Mom’s variable pressure mattress wasn’t working, which may have contributed to the bed sores forming so quickly. But her breathing was steady & unchanged from earlier, which convinced me to leave. My number is posted everywhere, with instructions everywhere to call me if her breathing changed dramatically. And at some point you have to accept that what’s going to happen is going to happen.

 Went home, got a solid 8 hours, then Aunt Beth & I headed over earlier than usual for the RN to arrive and assess. Mom was the same, but let me give a more detailed description, because if someone is reading this before their loved one is dying you need to brace yourself.

 Mom is emaciated at this point. Her eyes are sunken, her body with bones sharp against the skin. Her arms have veins sticking out, which is amazing for having had so little liquid, but her skin feels like tissue paper. It’s hard to look at her and realize that this has happened in under 3 weeks, and it’s even harder to look at her and remember her from 10 or 20 or 30 years ago. She is breathing through her mouth, and her teeth look even more crooked and discolored with the wasting of the gums and face. It’s her but it seems impossible that it’s her. There was fecal material yesterday, none since, and the urine catheter is in, so her bottom area is clean. Her hands are curled, and her arms lay where you place them. Every time it hits me I start to cry, but knowing that the hearing is the last sense to go I don’t want her to hear me sob, so I have to step back and collect myself. I stroke her arm, but there is no response, despite the warmth. Her breathing is deep & regular, her chest covered with a sheet and a nightgown that is cut up the back so they can assess the bed sores more easily. You can see her ribcage through the covers, the rounded prominence and then the sharp drop to the skin over the abdomen. She looks horrible. You can’t imagine that a person can look this skeletal and still be alive.

It is a HUGE comfort to me that this was her decision, and that she continued to be adamant even as she became less & less able to verbalize. I can’t imagine how much worse it would be if the circumstances were different.

 This leads to a soapbox moment: we are letting our elders down in this country, in most states. In about 10 other states there is legislation in place for MAiD: medical aid in dying. If this had been in one of those states Mom could have gone to her internist, expressed her wishes, been evaluated by another doctor to confirm she was terminal, and then given a drug cocktail which she could decide to take or not. (About a third of people who have the cocktail chose not to drink it, but it gives them comfort knowing they have the choice.) It eliminates this horrible part, the semi-conscious to unconscious, which can last for days. We are doing death wrong in this country, and my mother is the perfect example. I called her college roommate in California, same age, having more medical problems, and she said how much better she had it than Mom does, when you have to go through this torture.

Trying to get back to posting daily, so this was Tues, Oct 25, 2022

 

Mom is dying, post 7

 Note: these writings are NOT polished, when re-reading them find multiple mistakes, but too tired to edit.

Hospice nurse was here today, and acknowledged the obvious, that Mom has declined significantly since Thursday (it’s Monday, for those reading another time). I advocated for more morphine & Ativan, she agreed, noting that it’s harder for someone to die if they’re not comfortable. So, increased doses, frequency and ‘as needed’ doses written. Her urine is getting cloudier. When I told Mom this she asked ‘die faster?’, I said yes, she said ‘good’.  She’s having a much harder time speaking today, a couple times had to do ‘squeeze my hand for yes’ because she couldn’t get words out. She’s intermittently coughing, which has to be uncomfortable; medicine for secretions comes tomorrow. She is still cogent when she’s awake. The hospice nurse’s guess (which is only a guess) was that she will die by the end of the week. When I told her this she responded very clearly ‘good’.  I am very aware of how blessed I am that she is wanting to die and getting her wish, rather than the pain of watching someone fighting their death. She's better in mornings to about 3:00 pm, then starts getting worse. Same pattern for three weeks.

 She still sips a little water with pills, everything has been discontinued in pill form except for the Parkinson’s meds, so she doesn’t get tremors. This is especially important because her tremors were primarily around her jaw, and that may be why her faces is moving in such bizarre patterns. The Tylenol was no longer controlling the pain, and that’s a big pill. She’s not needed her mouth wet as much, I brought over some OTC eye gel to help her eyes stay moist, and that seems to be helping. Right now I’m sitting a few feet away, her breathing loud and regular, Mozart playing softly.

 It's hard to describe how surreal it feels to be sitting here typing (or reading, or eating, or texting) while my mother dies. There’s nothing to be done, but it just feels as if I should be doing something. I’ve got a greater appreciation for cultures who start mourning earlier, or who have elaborate rituals around death which require planning and getting supplies. I think they were created to give people something to do, and that sounds pretty good about now. I’ve coped with multiple medical & practical issues, cleared out a ton of papers, started clearing out clothes, still have to cancel newspaper & magazines, will do tomorrow. Outside that there isn’t anything to be done, you just………wait.

 As was my pattern when I was critically ill my way of coping is being super organized and thinking clinically. And it’s fascinating from a clinical standpoint. I’ve been around a lot of death, although in all fairness the goal was not letting it happen. I’ve been with friends as they died, and in the hospital when there was someone dying alone, I’d sit in their rooms and do paperwork, talking softly in case that was a comfort.

 She just sat forward, coughed a few times. Leaning forward doesn't look comfortable, picture holding yourself up half way through a sit-up. Her hand started moving under the covers, slowly, towards her upper body, I moved the sheets so there was no impairment, her hand continued towards the button around her neck that summons the nurses, which had gotten trapped under her nightgown. But even after moving it she was still agitated, and it’s less than an hour since the meds. She was trying to talk, was grimacing quite a bit, kept moving her hand, looked to her left but didn’t appear to be seeing anything, still in that painful looking position. I asked if she had ‘visitors’, hoping that maybe she’d see a familiar spirit (yes, I TOTALLY believe that), but she continued to be restless, so I went for the tried & true swabbing of the mouth, then the gel, which she weakly swished around in her mouth, then put Vaseline on her lips. She remained sitting up, still occasionally grimacing. The facial movements may be her trying to express something, or it may be the Parkinson’s. I reassured her, suggested she lay back, and finally she did. It’s so hard to watch, not knowing exactly what they want, and seeing their frustration in not being able to communicate. 

I’m thinking it will be ‘easier’ when she becomes unconscious, as hopefully she won’t be aware. The trick then is to guess when she needs to be medicated, other than that it will be long stretches of nothing but listening to her breathing. But hopefully she won't be in pain or discomfort; or is it me that won't be if it's not obvious?

Later in the evening, from home:

I've been getting at least 8 hrs every night since this started, but it's taking it's toll after 3 weeks. (First week was getting ready for announcement to doctor, lots of stuff to get done.) This morning I woke up and within minutes felt as tired as I had going to bed. My sleep seems fine, using CPAP, think it's just worry and the pending major change in my life. Beth looked at me this morning, and said 'It's time you admit you need help, this is what I'm here for, to help you.' In the last several years I have started repeating a mantra to myself: 'You're on disability for a reason. The reason is you are sick, not weak, but sick.' This is what I'd say to someone else, and so often we don't give ourselves the same grace. 

Driving over the fatigue hit me, and I know the standard care givers speech: 'put your oxygen mask on first', etc, Texted Beth 'You're right, I need some down time.' Mark brought her over a little after 5:00, and I came home. I did nothing except lie on the couch and watch a stupid movie. (I'm talking really stupid, Hallmark channel stupid!)  While not feeling perkier am hoping this translates into a better night's sleep.

How much worse will she be tomorrow?

 

Mom is dying, 6th post

 Again, she's weaker, the good news is less agitated. That said she's still 'picking' at things, which you see in dementia patients but can also be a Parkinson's symptom. She picks at her hair, her face, her arms; there's no damage, but it's hard to watch the difficulty of the movement with no purpose. She's very gaunt, looking more and more dehydrated, her urine more concentrated. She's still very fussy, but hey, she's uncomfortable because she's dehydrating. She was wiping her eyes a lot yesterday, but today it occurred to me that they must be dry, so instead used a wet cloth and she felt better. Will ask hospice nurse tomorrow if there's a gel or something to keep her eyes more moist.

For someone who needs hearing aids and is dying her hearing is incredibly acute. I've heard of this phenomenon, where people get back senses they had previously lost. For the first few hours I managed to clear out a lot of papers in the next room, but then needed to sit, went back to living room. She woke to the microwave, so I was apologizing for eating, couldn't wash anything in the sink, plus the chair squeaks every time I sit down. (What makes it worse is that's a chair I brought over from storage, it had been my late Aunt Barbie's that I was keeping. Now I've discovered it squeaks and isn't comfortable, so silver lining: two chairs to get out of the storage space.) Despite the Ativan she's not sleeping, so will be asking for increased dose tomorrow.

At one point she asked out of the blue & very clearly 'When is Karen going to be back?'  This is a Baha'i whom Mom really likes, and she wants her husband to do her graveside service. They were going up to Boston for 4 days to visit their daughter, and Mom was not happy they wouldn't be available. I answered that they were back tonight, so if she died today they would be available for the graveside, since that wouldn't happen until at least Tuesday. Then I asked 'Is that what you've been waiting for, for them to be back?'  She responded 'maybe', and went to sleep.

For a while she wanted the Muzak off, because they put up pretty pictures, which change every 10-15 seconds, but that also changes the light in the room. Being relieved from Muzak should have been a relief, but then the only sounds were the refrigerator behind me and her breathing, and me not moving in the squeaky chair. I was thinking 'Should I be doing something, like praying more or meditating?' I've been doing both, clearly to no avail. The next time she woke I suggested Mozart via Alexa, and it occurred to me that if I'd thought of that before we could have avoided moving the bed. 

Tried the morphine. Her breathing had been ragged, and it would be a good idea to see her response before nurse comes tomorrow, in case the dose needs adjustment. It definitely quieted her breathing, although she said she couldn't feel the difference. She wants to lie absolutely flat, the wonderful CNA on tonight encouraged her to sit on an incline, but then Mom said her back hurt more. 

Most of the time I'd see her moving and jump to her bedside. The requests are ice chips, the gel that keeps her mouth moist, Vaseline, wipe her eyes, and spitting into a tissue. She's coughing, and getting the secretions in the back of her throat. But several times she called my name, and when I rushed over she smiled and said 'I just wanted to be sure you were still there'. I told her that at some point I'd have to leave, and she said she understood, but she's clearly happier when I'm there.

When I left about 9:00 pm she was sleeping, having just had her night meds, including a regular dose of Ativan. There is a list of things to talk to the nurse about tomorrow, she's supposed to call me in the morning to let me know what time she'll be coming. The staff in Personal Care, where Mom has been for five years, has been just tremendous, and I thank them over and over. 

This waiting thing is rough.

Mom is dying, 5th post

 She’s worse today, as has been the pattern. Her speech is barely above a whisper, and she has a harder time forming her words. Her urine is scant and very concentrated. She sleeps almost all the time, but is still cogent once she wakes up. She’s forgetful, but wanted me reminded to cancel newspaper & magazine subscriptions, which is pretty remarkable that she’s thinking about such mundane things at this point. Her face is more gaunt, but her breathing is regular. Her mouth is, of course, very dry; this is the first day I haven’t offered her a small piece of chocolate, because I think she’d choke. The gel works well, and she likes ice chips briefly, although spits them out after a few seconds.

 The bed was moved this morning before I arrived, only a few steps from her chair, and now she has the TV & Muzak. She doesn’t move around in the bed, so she said yes to my suggestion of moving to the chair for a few hours. One of the aides and I did it, and she was almost dead weight, so no question she’s in the chair for the last time. They’re going to move her back to bed in about 30 mins, after 9pm, and I asked her if she wanted me to stay. She said ‘I don’t want to keep you.’, I assured her that it was fine, because she likes me to be here while she gets settled and wait to leave until she’s asleep. She doesn’t want anyone else here, although the aides stop in to visit and she enjoys that, but she doesn’t want to talk except if she wants something. She just wants to sleep.

 Someone suggested today that it is hard for some people to die with their children present. I pointed out that I’m here 8-9 hours a day (her friend is here every morning for 2 hours) so that she has two swaths of time to choose from in regards to my here/not here. We discussed her being alone when she died a couple weeks ago, because physically I can’t sleep here and stay healthy, and she said it was fine. She & I both have lived for so long by ourselves that having someone with us isn’t a necessity.

 For some reason it was very important to her to be able to change the channel on the TV today. Obviously, it’s unnecessary with me here, so I asked her why, and she responded ‘I just want to know I still can.’ After several tries (with me pouncing on ‘exit’ when strange stuff came up) she finally succeeded, and, for some reason, that gave her peace. When she woke the next time I had to break it to her that I can tolerate ‘easy listening’ Muzak, but that Jazz Muzak was too far over the line for me to stand.

 Her quote of the day was ‘Transitions are hard’. I asked if she was scared, she said no. For years she has said that the words she wants to hear when she dies are ‘Welcome home’, and you can’t argue with that. Her line up until today was ‘So far dying is easy’, but I think she’s past it feeling easy at this point.

 We’ve talked in the last couple weeks about people who have died who will be there to greet her. I asked again tonight, and she came up with a few new names. She’s not seeing, hearing or feeling anything from the other side, at least so far. She says she keeps praying to God to die, and she doesn’t understand why he won’t let her come home. (That’s when I got choked up, because what do you say to that? I had to settle for responding ‘I don’t understand either.’)

 Medically speaking she could go on for days. Being clinical I’d expect her to get more confused, then become unconscious for a few days before dying. But you just never know. There isn’t anyone she’s waiting for, I’ve asked if there is anything I could do or say to help her release and die, she said ‘no’, so it’s just the agony of watching and waiting. It crossed my mind at one point to question being a Doula if this is difficult for me, but immediately recognized that your mother dying is a special circumstance. It does, however, give me a good reminder to be empathetic with others, so there’s that. Plus, with my health, I won’t be doing vigils, as some Doulas do, it’s just not possible physically.

Mom is dying, 4th post

Today she was a little weaker, her friend texted that she wasn't able to push herself up this morning. It takes two people to get her to bathroom, and now she can't stand to wash her face or do anything with her teeth, so she's just rinsing with Listerine, and then is brought a wet washcloth for her face once she's in her chair. She's been moving back and forth between her bed & the chair in the living room, she asked me if she could just stay in the chair, because in the living room she has the TV and she likes the Muzak channels. Initially I said 'sure', but then realized that she wouldn't be moving at all, and the bed has one of those variable pressure mattresses, which keeps people from developing bedsores. If she's only in the chair, not moving, she's going to get bed sores, and they can be very nasty. Long story short the best answer is to move the bed into the living room, but by the time it was realized there was only one person still there. So, that happens tomorrow.

Beth & Mark arrived, and she was very happy to see them. She was very anxious about me, which is not usual for her, and she feels better that they are with me to take care of me. She told them she wanted to sleep after less than 10 mins. Beth thought she looked a long way from dying, but Mom was much worse after their visit, same thing yesterday. I'm hoping she'll relax enough now that she could die peacefully. 

It's almost midnight, we've been chatting away. Spice is adjusting to having one of his scratching pads, a bed and his food moved. I couldn't move his litter box in addition, there's only so much change a kitty can handle at once. Beth had particularly bad experiences with Chester, Mark had a few encounters. They both raved about what an improvement Spice is regarding visitors. I'm not taking him to Mom's again, he absolutely hated the car rides, plus he was never going to settle in her lap. 

I'm still not crying......

Mom is dying, 3rd post

 She's a little worse each day, more fragile looking. Another couple of her faith came over, the man said 'You look great!', which she doesn't. She looks fragile and old. It annoys me when people do that, lie to the person or themselves. Why not just 'It's so good to see you!'. Making a false statement about an ill person's appearance is so annoying.  Are you saying you don't believe they are sick or dying? Are you trying to make it less true? Why are you too scared to speak the truth?

I don't understand not talking about death, know that's in an earlier post. It's the one thing that's guaranteed. Talking about it doesn't make it happen. And if someone knows that they're dying why do you have to lie to them? To pretend it isn't happening? Why can't people accept the process, and embrace it for the transition it is, stepping into the unknown? One of my favorite quotes is from Anne Morrow Lindburgh: We are not snuffed out at death, merely absorbed into a larger flame. I love that image, of joining a larger Spirit world. 

Mom's memory has been going for several years. About 4-5 years ago she announced to me, carefully forming the words 'I believe I have mild cognitive impairment.' I assured her that if she could remember that phrase that it really was mild. It's spotty. A lot of people remember their pasts, their childhoods, but not recent events. She hasn't remembered the past for decades, now it's even worse. 

She doesn't remember what people have said, or only remembers fragments and then tries to put the pieces together, never succeeding. It's like trying to finish a puzzle where many of the pieces are missing. So it's important that I be there for conversations, to remind her when she can't remember or is confused. She remains very anxious, which is just her. She's always been anxious, as was her mother. Now it's escalating. She's on a tiny dose of Ativan twice a day, it was 0.5 mg, but she had problems sleeping and was too out of it, so it dropped to 0.25 twice a day. I wish she'd take it more often, which she can, because it's hard to watch her so confused, you can feel how scared she is of whatever she's anxious about, which can be anything. Who will lead her service? (Bahais don't have clergy, so it's other members of the faith.) What will the weather be like? Does the funeral home know how to wrap the shroud? Why didn't I wear the matching ring with her necklace? (Seriously! That was yesterday.)

Not getting much done at home except for the essentials, as I type a load of laundry is finishing, bed was changed and paid some bills. Did have hair appt today, pushed back from last week. But I'm tired. It's amazing how much there is to be coordinated and managed, it's unfathomable to me how people work when they are the primary care provider for a loved one. And so many things going on reinforce the knowledge of how valuable a Death/EoL Doula can be in the process.

It's now approaching 2 weeks since she last ate, although there were a few Boosts after that, and she's still enjoying a mini Reese's cup every day. She sleeps more and more, her breathing becoming more ragged, although not the end-of-life breathing. She is so frail, and everything is an effort. Most of the time her mouth is open when she's sleeping, so she wakes feeling very dried out. When the Sjogren's started, before all the drugs, I found a mouth moistening gel to help. Even picking that up, flipping the cap, squirting into her mouth, pushing the cap down and then putting it on the table next to her is an agonizingly slow process. She's still relatively pain-free, which is a huge blessing. The Foley (urinary catheter) was changed today, and there were some problems. She gave a big smile when I told her it was the last time she'd have to tolerate the procedure. She takes pleasure in this relief, of what she won't have to do anymore. She just wants to die, to be out of this body that no longer functions or serves her. I

So many times I'd see patients on ventilators with 4-5 pressor drugs running, tubes everywhere feeding them, breathing, draining. And I'd ask the family if they wanted to back off on such aggressive treatment when there was no hope. So often they'd smile and say, 'Oh, God will decide when it's their time.', and I'd think 'God already made the decision, you're the one holding it up.' Why do people think that God will punish them for dying a few hours or days earlier, rather than be tortured into the grave? Who wants to worship a God who would want you to suffer when you are dying? Suffering during life is, I certainly hope, a growing/learning process. But at the end? Why?

The last couple days I've been closer to breaking down, and have felt more fragile emotionally, which everyone assures me is normal. Even being close to 60yo you only lose your mother once. My mother is a wonderful person, but she has never been very maternal, and like many mother-daughter relationships ours has been fraught with difficulty. With no false modesty I can say I've been terrific, handling everything, anticipating problems, finding solutions. I will have no regrets at the end, and she is more appreciative of me than she has ever been before.

I decided to accept 'Aunt' Beth's offer to come and stay with me for as long as necessary. Long time readers will remember Beth, she was with me through all the surgeries and stayed with me afterwards. Technically, she's my father's first cousin, and therefore my 1rst cousin once removed, but 'aunt' is appropriate, and also gives the generational recognition. Her son, my cousin Mark, will come with her, and he will be a huge help as well. I'm struggling with sharing my space, but know this is the time, more than any other since my surgery, that I'll need the support, hard as that is to admit. As long as there are things to do the emotions are at bay, so most of tonight was spent getting ready for long term guests who will need drawers & closet space. 

It's still an unknown, of course, how long she will last like this. The biggest change happened a week after she stopped eating, getting a little worse Monday, Tuesday & Weds, but today was very similar to yesterday. Will she be worse tomorrow? Will she plateau for several days? She definitely has the 'inward turning' , a commonality amongst the dying. She actually asked her visitors today to leave, saying she wanted to sleep, and it was good she was able to say that. She loves hearing memories of her that are positive, but it's too much effort to converse for long. 

So, I'm going to stop now, because I want some time on the couch with Spice. It will be the last time it will be 'normal' here at home before my mother dies. I've already started doing that, thinking about what it will be like. It's easier when someone has been failing for years, but it's amazing that I feel so surprised about the pending loss. I guess it's just more.......real.

Not sure any of this has any meaning to anyone else......

Mom is dying, 2nd post

 Sorry, too tired to come up with spiffy title.

Went to bed at the very reasonable hour (for me) of 12:15 am, read for 15 mins, up at 9:00 feeling much better and vowing to continue this schedule, if not getting to bed a little earlier. Spice was snuggled up against my left side when I woke, he is just the best kitty. I took him to Mom's again today, his 5th visit. She asked for him last week, she really wants him to curl up on her lap. So far it's no go, although in all fairness he still isn't comfortable enough to stay on my lap for long when we're over there. She enjoys watching him play, and the staff loves him. He greets everyone who comes in, rubs up against them, flops over to have his belly rubbed. I have a 'portable' litter box for him which zips up like a suitcase to contain the litter, plus his dry food & water, several toys, including the catnip banana. And it means he's not alone for 10 hours a day, which he doesn't like. Only problem is he hates the car rides to and from. 

Mom was worse today, sleeping more. Her speech was softer and even more difficult to understand. She also likes to keep one of the Muzak channels on, so it's even harder to hear her. She said to me today that there is no reason for me to come over and sit for hours if she's just going to sleep. This gives me permission to come & go more, but I told her that I think it's worth my being there for 'just in case', and because I think that she's declining quickly enough that she may die more quickly than anticipated. She says she's ok being alone & dying, which is good because ultimately it is the one thing you have to do alone. But if possible I'd like to be there. 

She had some lower back pain this afternoon, and asked if she should walk around. I encouraged that, as she's either in bed or in the recliner. Had her bend forward several times in her chair to get her lower back muscles stretched out. She walked around the apartment a couple times with an aide, it's obvious why she's ready to die when you watch her, it's clearly tortuous. Difficulty getting started with the Parkinson's (typical), trouble placing her feet correctly, shuffling footsteps, and so incredibly short and bent over. 

She only had one piece of candy today. Brought her a gel to keep her mouth moist, and she liked it, but may not be able to coordinate flipping the cap up & squeezing it into her mouth by herself. Yes, something that simple is a struggle. She still finds things to worry about. Who will lead her graveside service if the couple she wanted is away still. Of course she asks what's going to happen next, meaning to her in the dying process. I'm as honest as possible, including that there isn't any way to know exactly what will happen when. 

To her credit she doesn't really complain, and she brings up all the things she's grateful that she doesn't have to do, like eat, brush her teeth, get dressed. It's so sad to think about those things most of us do without thinking are so laborious to her. I wish more people understood this as their parents age, maybe they'd stop forcing them to keep living if they saw the difficulties.

Got her ancient computer tower out, along with older printer & screen, took to Staples. Quietly took out several bags of clothes her friend had bagged up, took to Green Drop. I don't want anything else she can see to be removed, because she shouldn't feel as if we're trying to hurry her along. But the computer area is so dusty that it flared my asthma, and she understood that. 

Mostly, she just slept. Tomorrow the social worker has first visit, although don't think they'll be much they can do to help. She'd like her hair washed, so hopefully their aide has something which can be used in the chair or bed, because she's too weak for the shower. She's only wearing nightgowns, I brought over several she had previously turned over to me plus a couple other ones so there is always a fresh supply.

I left notes for the aides who are there to call me if her breathing changes, if it becomes very slow, gasping or gurgling. I think it's still a few days away, but figured better to start getting them trained early rather than late. Technically she's in 'Personal Care', because if it was Assisted Living they would have to have more nursing coverage. Most of the aides are wonderful, she's not happy that it's the male aide she doesn't like as much who is on the current evening rotation. She's been in PC for 5 years now, has lived in Wesley for almost 19 yrs. 

So, progressing towards death faster than I'd anticipated. My guess a few days ago was 2 weeks, but thinking now it may be only 5-7 days. 

It's after 9:45, I want some down time watching stupid TV with Spice on my lap, then to get to bed by midnight. I managed 10 mins of yoga this morning, and need to go back to that regularly. My cleaning guys come for the first time in over a month, they'll just have to clean around the messes. As I type Spice is happily batting one of his favorite things around--a ping-pong ball. Super light, skitters across the floor, he chases after it until bored or a fur mouse or other toy distracts him. No one can believe he's at least 10-11 yrs old. Once Mom is gone I'll try again to find a companion for him. We both miss his sister Sugar.

My mother is dying

 Apologies, Deneen, for not posting on 9/11 this year. I was traveling, can't say more.

Mom, almost 93 yo, has Parkinson's, so many vertebral fractures that her lower ribs are in her pelvic girdle (she's now less than 4'5" tall), severe arthritis in her hands, increasing problems involving her mouth with food and speaking due to the Parkinson's, and a neurogenic bladder which requires an in-dwelling catheter. For years she has told me she was ready to die. There was no medication to be discontinued, her heart is strong, no diabetes, no cancer. In June she told her urologist how awful she felt, and he told her she could stop the Foley catheter changes. This would lead to urine retention, one of two things would happen: infection going to urosepsis or kidney failure. Chances are a combo of both. 

Her whole life she was a foodaholic, struggling with obesity, loving almost every food. Then, even before the fall that broke her pelvis, she just lost her appetite. She's forced herself to eat for years, mostly because of trouble with her BMs and knowing she needed fiber. So, giving up food isn't difficult for her, and that's what she's decided to do. Her last meal was lunch on October 9th. She was scheduled with her internist the next day to discuss going on hospice, she looked at me at dinnertime and said 'I don't want to eat.' I replied 'Then don't, you don't have to if you don't want to.' 

Outside of a couple of mini Reese's cups she hasn't eaten anything since, only drinks water to take meds, but she needs a lot of water as she's always struggled with swallowing pills. The intake hospice nurse said they wouldn't take out the Foley, because it would hasten death, my mother leaned forward and said 'That's what I want! Let me die!'. It kinda pissed me off, because I'd had a long conversation with this woman the previous week, and she'd never indicated a problem. Last Thursday the regular hospice nurse saw her, called me for the whole story and said she'd talk with her medical director. I pointed out the obvious: that without the advanced care of the catheter she would have died years ago.

Today the nurse said they would honor her wishes, but she expressed concern that if the catheter was removed and Mom had increasing discomfort that they might not be able to re-insert. Mom revealed for the first time that she has been having increasing back pain in bed (not surprising considering the state of her spine), and I pointed out that having an undrained full bladder pushing down on her spine would increase her pain. In the last week Mom has refused visitors, is sleeping more, her urine has concentrated with little fluid, her heart rate is up, her BP is down, and those are all signs of impending death. I reassured her that she was dying, and that, for now, the catheter should stay in place. If she doesn't continue to deteriorate then it can be re-visited next week. 

My Mom's comment today was 'Well, so far dying has been pretty easy.' She's getting Ativan, so her anxiety is less, also helping her with sleeping more. She's relieved to not have to get dressed, to not have to go through an elaborate routine to remove food from pockets in her mouth, to not have to be positive when she doesn't feel like it, to not have to use the CPAP, and to not have to eat. She is not in distress, is fairly comfortable, and I have every hope that she'll die peacefully, perhaps aided by a UTI. (In medicine urinary tract infections are referred to as an elderly person's best friend, because they get septic and die.)

Multiple people have commented at how striking it is to see people discussing death so openly, to be comfortable talking about the what-ifs and what would then happen. For Deneen's info: I've become an End of Life or Death Doula in the last year, because I think this is how death should be approached: open, honest, concentrating on what the dying person needs or wants. Everyone dies, it's the one guarantee in life, so why can't we deal with it? Talking about it does not make it happen, it's inevitable. Why won't people talk about death? 

She is a Baha'i, with very specific burial rituals. There is now a silk shroud (9 feet long, I don't ask why), a ring that says she is going back to God (doesn't he know already?) and essential rose oil in the apartment in preparation. I had called the funeral home where the plots are located last year after one of the bad falls, know everything is ready in that department. 

Last Monday we went through her ridiculous amount of jewelry, with much of it going to a sale benefitting the benevolent fund. We've gone through old pictures and letters, the magazines that she used to write for (Movie Life & Cosmopolitan before it was a fashion magazine), plus did her very outdated rolodex regarding who was now dead, who she hasn't heard from for a Christmas or two, who she wants to know now and who after she's gone. I've told her stories of patient's near death experiences, things that happened on calls that reinforce my belief in Spirit, which reassured her. 

The obvious question then becomes: how am I responding to this huge change in my life? Honestly, pretty unemotionally. Right now I'm in cope mode, and it's surprising how much there is to do, how many people to coordinate. She's in personal care with nursing staff to care for her, and since I don't work it makes it much easier on me. That said I've been staying up too late watching TV (addicted to old sit-coms!), going to bed at 2am, then up in less than 8 hours, over to her place before 1pm. Not getting much accomplished, but it's not helped by the staying up until ridiculous hours. My guess is that I'll stay in this mode until after she is buried and all that is left is clearing out the apartment. Maybe I'll break down before? I'm grateful that her Baha'i friends are being super helpful, my cousins are being very caring, and my Fellowship very supportive. 

It occurred to me that this is something that should be documented, so here we are. It won't be as polished as many previous posts, because it's going to be getting facts & emotions down while trying to get to bed at a more reasonable hour.

So, here we go, on a once in lifetime adventure. While most people go through the death of their parents everyone's experience is different. This will be mine.