This is one of my favorite pictures of us. It's the Mother's Day Tea at Harbor Chase, the whole gang. May 8th 2016 to be exact. This was Sunday. On Tuesday evening mom fell and broke her hip while I was at Haley's track meet. The short story of what I'm about to try to write out? Surgery on the 11th, then discharged to a specialty rehab facility on the 13th. Staff could not wake her up on Monday, June 13, and she died Saturday, June 18th 2016.
Mom had quite a few years of decline into Alzheimer's. A lot of it we noticed, and it concerned us, but it's really to excuse behaviors. "Oh, she's always been forgetful;" "she's always been a loner" "she was never a good driver!" were typical excuses. I'd call to talk about Lost (the TV show) and she would say she forgot it was on - that never happened! She'd get lost going grocery shopping. Her sister would come over, and I'd hear later when I called that SOMEONE was over but she had no idea who it was. There were many, many more stories like this, and something had to be done to help. Fast forward to mom moving into a little house two miles down the road from me. I was the daughter who was home with the kids, had no pressing job responsibilities, etc, so it made perfect sense for me to 'take care of' mom. I was happy, I was ready. We grocery shopped together, watched tv...she was my partner and sidekick. Dr appointments, diet, keeping her busy - I was happy to be able to keep a good eye on her. At first she didn't need daily (really hourly) supervision - just someone to do things with, to be around, to be on call. I'd come over, we'd go shopping, she'd come to my house, or she was happy reading her books, walking her dog (just up and back on the block a few houses), and gardening. Tim would go over in the evenings to swim in the lake she lived on, and she'd help him get his wet suit zipped up and then they'd have rolled up turkey slices together. It was working out well. Shopping together at Public changed from us each taking a cart and doing our own thing (she didn't drive - I let her just wander the store alone because let's face it, she needed a break from me occasionally!) to her walking alone with me ten feet behind, because she'd get lost and start thinking different ladies were me.
 |
| When mom was annoyed at me even when I took her to a bookstore with cats! |
Unfortunately Alzheimer's marches along, and life just gets progressively worse. Forgetting things is the easy part of Alzheimer's. My sweet docile mom started arguing and yelling. A lot. She was easily angered. She would insist that she was at work, and someone was on their way to relieve her (we'd be standing in her kitchen arguing about this). Nothing you could say would ease her mind. We'd go grocery shopping and pick up cat food. Between saying goodnight, and me coming over in the morning (she needed help turning on her tv) she would give the one cat all 15 cans of cat food. She just didn't realize she had already fed her. Even looking at 15 plates of food, she couldn't recognize the fact that it meant that she opened 15 cans of cat food! We had to unplug appliances to prevent accidents. She started wandering at night; I'd get calls from neighbors and find notes on her counter from someone who had walked her home. Things got scary. She took blood pressure meds set up for the week in one shot (that sent us to the ER for a few days). She needed constant supervision. She needed help dressing, bathing (and even just plain old hand washing), using the bathroom, and just forget cooking or preparing food. She was just so unaware of basic things.
After months of a lot of tears (from both of us) and me spending Wednesday evenings going to a Caregivers support group (the single best thing I ever did during this time), we moved mom to Harbor Chase, which is a Memory Care facility about 20 minutes from my house. It's a horrible decision to have to make. No one wants to do it. As conditions continued to worsen, Mom needed constant supervision and routine. I was all over the place with kids, and let's face it - one on one is not keeping mom social, keeping her engaged. It was keeping her in a little cocoon, which does not help. At Harbor Chase she would have constant company, activities, food prepared for her, and general help with ADL (activities of daily living - dressing, bathing, toileting, hair care, etc). The social stimulation was vital to keep her engaged in life. She was always the type to not want to join in. Never had an interest in being social, and this only got worse as she got older and became even more solitary. It never seemed to be a big deal - this was just mom. She was happy doing her thing. But now, being alone (which is what she wanted) was hurting her. She became scared when she was alone, but angry and combative when told she was staying with me. Nothing was making her happy or secure. It was a constant ballers to try to figure out what would help.
The adjustment was harder for me than it was for her. Parenting can be full of guilt. You never feel like you're enough, or what you're doing is enough. This felt the same way. I was parenting my parent. I was the one who had to make all the decisions, who had to make sure she was eating healthy foods, drinking enough, taking her blood pressure medication, staying clean.....and it was overwhelming. The parent/child relationship in caregiving is different from the spouse/spouse relationship. In the beginnings of living with the disease, the parent fights against the child telling them what/how to do things. They are aware that 'this is my child, I'M the parent!!' even while being unaware of their behavior. It's hard. I never really second guessed my decision to move mom to Harbor Chase. Would I have loved for her to live many, many years just down the road, just hanging out together? Yes absolutely. Could I keep her home forever? No. Anyone who has had to make the decision to place a parent knows what it's like. Knows how impossible it can be. Knows how dangerous it can be. Knows how gut wrenching it is. You don't know, you don't understand the constant-ness of it until you live it. I will never, ever ever question a caregiver about placing a parent/loved one. I'll hug them and say "I know. I get it."
The best thing about Harbor Chase? Other than the really decent, nice staff - the families. I became a regular (and yep I take some pride in being called that by the staff) and got to know many different family members of other residents. We'd share phone numbers and check in on each other's parents when we visited. One came mostly in the evenings and gave us a run down on the goings on then. I'd overlap my visits with others, and we'd talk about what was going on, and hand off our moms sometimes ("mom I'm going to work so Cindy is going to walk with you and Patty now!"). One daughter cried - she lived in NJ and her mom was at Harbor Chase. Her dad had done all the caretaking, until he had to mover her there. Then he had a stroke and died - so now her mom was there and the family was far away. We exchanged numbers and I told her I'd sit with her mom too, and call her if I noticed anything amiss until she got things worked out to move her mom (never had to, the staff took good care off everyone). Mom was always with her buddy Evelyn, and usually in a group of three or four other residents. Evelyn became her person though, they very quickly forged a strong bond. Always holding hands, always eating together, always together when activities were going on. Evelyn's daughter asked if I minded that Evelyn brought my mom along to the Jewish service that they had a Harbor Chase, and I said "I think it's great!". Mom was actually content. Family members all said how sweet mom was. everyone loved her. I could walk in any day and wave hi to many different family members, which was always so nice. Some days I'd be walking around, looking for mom (who was in an activity, watching a movie, or outside usually) and spend twenty minutes saying hi to everyone before I even found my own mom! So many times there would be a group of us all sitting on the couches outside, talking away, reminiscing or engaging in some crazy conversation that usually had us all laughing.
 |
| Mom and Evelyn |
I got to know all the residents too. Most by name, some not. A memory care facility is not a nursing home - the residents need help and direction, but are generally healthy. Some are in wheelchairs, and some further along in the disease are unable to walk, talk, or even move much. But the majority were pretty able bodied. Enough to play some simple games, bingo, sing, etc. Harbor Chase had a hair/nail salon (where a nice lady came weekly to wash/style hair, and do nail polish), a Sweet Shop (that looked like a store full of candy and ice cream...very cute) and group activities. Some days I'd go sit with mom and Evelyn when the group was doing Current Events. An aide would lead the group, and it was usually simple things like "Let's name all the states!" and everyone would call out a state, while she wrote it down on a big whiteoard. We'd hear New York 17 times, which always made me laugh. Then it was "Let's name things on a farm!" and the residents would say "chicken! Horse!" among other random things, like 'radio'. You just smiled and went with it.
There were always a lot of people to hug hello and goodbye to when I'd visit. I would always make a big display of saying goodbye to mom last. When it was time to go (I always said I had to go to work, or go pick up the kids....mom would immediately say "oh don't be late, you don't make those kids wait!') I'd go around to everyone (at the table, on the couch, etc, depending on where we were sitting/what we were doing) and give a hug and kiss and say "see you tomorrow!" and then I'd hug and kiss mom. I would always say"I saved the best for last!" and she loved that. It always made both of us tear up. I'd pull from my pre-school memory bank - it's ok, she's ok, say goodbye quickly and give a reassuring hug. She would give me a little look when I would say goodbye to other people - she didn't like me paying too much attention to anyone else - until she got her special goodbye. It still makes me smile thinking about that!
(Night Cap Caregiver Support Group, every Wednesday night. Support group specifically for children caregivers of Alzheimer's patients. wonderful, wonderful people. I typically sat next to the same woman (they had tables set up in a circle, and we all ate, chatted, and then got down to group discussions/films/guest speakers). She was helping take care of her dad - she lived in her own place, but was increasingly concerned about how mom was handling caring for dad as he declined. She had a short pixie haircut, was always a little brash and typically sat with her arms folded, a little bit detatched from everyone. One night we were chatting while eating, before the group really started, and she asked me about my tattoos (she also had quite a few). I explained my wrist tattoo - how it meant a lot to me, because someone who I respected and admired wrote me a note saying 'This is an old Chinese saying that describes you. It means soft on the outside with strong inside.' I always smile when telling this story, because it's important to me... and then I noticed her crying. She just crumbled in her seat. She said "I wish that was me. I'm the opposite. I am this tough mean person on the outside, but inside I'm falling apart." It broke my heart a bit - I think she may have been trying hard to keep up her tough exterior, and that made it harder to ask for help. We hugged and decided that both were ok - a kairos moment - and that being aware of when to soften the toughness and harden the softness might be most important. I'll never forget her.)
Mom was declining, yes. Not drastically. She got to the point where she would try to eat everything with a knife. And then she'd shove every utensil she could find into her pants. She was completely incontinent and was totally unaware of it. I guess that was a blessing at that point - no arguing or fighting it anymore. Conversation was crazy - she would nod and smile, but could not hold any kind of conversation. Words could not come to her (yet she was unaware of it), and she'd chatter with random words that made no sense. That was fine though, we'd just walk and hold hands and I'd do all the talking. Some days we'd sit and she'd fall asleep, other days we'd sit with a group of ladies and mom would smile and nod but be totally uninvolved. She'd pick at things on the wall, the floor, on her pants. Nothing was there, but she kept picking away at SOMETHING. But - she was 'easy'. No trouble, no yelling, hitting, etc. Harbor Chase had calmed all of that in her. The routine, the friends she had (she was always holding hands with Evelyn or someone when I'd walk in), the constant company was good for her. She thrived (as best she could with Alzheimer's). She loved the dining room where someone gave her pretty plates of food and desert AND SHE DIDN'T HAVE TO PAY!! The chef knew she liked tea. Knew how important that was to me, that she could get a hot cup of tea when she wanted it. He always came over and offered her a cup, but she stopped drinking it. Her neurologist said that the need was no longer there - just one more thing that Alzheimer's would take away. That was sad. Everyone called her Miss Pat, Patty, Miss Patty and told me how sweet she was. Her morning aide always did her hair so nicely and put a flower clip in it (I made sure she had a constant stack of clips - things would disappear but that's ok. I had a bag I'd keep in the trunk of my car with little stuffed animals, toys, and hair clips/flowers.) Things were steady, calm, and ok.
 |
| Waiting for the Sweet Shop to open for a treat! |
Then mom fell. Broke her hip. Unfortunately, it happens. It's usually not some spectacular fall -I have been at Harbor Chase, standing there, doing nothing and have watched residents fall. Just simply tip her and fall. I didn't think it actually happened....but I have watched it happen. Even Evelyn, moms best friend, walked into the 'living room' and fell straight down. I was in the next room and couldn't prevent it! Alzheimer's does something to their sense of balance. They start walking with a kind of shuffle - and they sometimes just fall over. So mom fell the night I was at Haley's track meet. They called, and I ran to the ER. Mom was on heavy pain meds but looked ok. Drs all said surgery was necessary. I was kind of dumbfounded - I knew surgery was risky, anesthesia and Alzheimer's do NOT mix, and this could potentially be the thing mom never recovered from. It was terrifying. The Dr looked at me and said 'she is in pain, she needs this fixed. The only other option is hospice, but she'll still be in pain. It's a pretty bad pain.' I didn't want my mom in pain.
Surgery took place Tuesday, and everything went perfectly. Dr was very pleased, and said she should be up and moving the next day to encourage healing, etc etc etc....it was a blur. Mom had Alzheimer's. Nothing was easy. Nothing was simple. When mom started waking up, she was combative. Ripped her IV's out numerous times. Tried to pull her catheter out numerous times. I was shaking I was so upset trying to keep her calm - FOR HOURS. It was never ending. I even asked the nurses if she could be restrained, because it could not be good to keep pulling the iv out. Or to have me hold her arms down while she screamed, and writhed in pain or anger for hours. It was beyond exhausting for all of us. Any time she moved, she was in pain - and fighting me was causing her more. Finally they gave her Ativan. It calmed her; she relaxed and could sleep. But then she didn't wake up. She was completely unresponsive. Ativan can be a blessing or a curse (again, especially with elderly Alzheimer's patients). When they told me mom was being released I was in shock. She was completely unresponsive ! How could they let her go? I don't even want to get into the fact that she had no private health insurance (Medicare was her only source or health care) and how that played into her being moved out so quickly. They told me that she could recover at the rehab center just as well as she could at the hospital or anywhere, so that's where we headed.
(Backtracking a bit - while at Harbor Chase, Mom saw Dr. Portnova. There was a full nurses station (a few rooms, exam area, etc) for daily checks, etc, but on Thursday Dr. Portnova came and saw anyone that needed extra treatment, or if a family member wanted something checked out, etc. Everything ran very well this way; concerns were addressed quickly (she barely ever had any) and her care was good.)
Dr Portnova came to the hospital after mom's hip surgery and got her set up to go to a specialty Alzheimer's rehab facility (where she was on the Board of Directors - that helped her quickly get a bed for mom. Getting a bed for an Alzheimers patient could be tricky). She made all the calls for me, which was fantastic. She also visited that facility, I guess was considered staff (? not sure about that, but I knew she visited other patients there) so she could continue to see mom as she was rehabbing (whatever that would mean, I had no idea at this point). Ok, it sounded positive during a rushed, nervewracking time. I had no idea what was coming or what to expect. All I knew was that my mom was still unresponsive but leaving the hospital.
On Friday May 13th mom went to Heartland Rehab.
Heartland was a shock to the system after Harbor Chase. My sister flew into to town Saturday so she could stay with mom while I went to Lindsey's HS Graduation. I could not focus on both, or be two places at once, and both needed full attention. I got the gift of being totally present on Lindsey's special day, which was great. Saturday she was still unresponsive and we had no idea what was going to happen, if she was ever going to 'wake up'. Finally, on Sunday morning she did. She was sitting up, wanted to eat, was talking. We thought this was the start of recovery, yay! Mom was getting better. My sister returned home, and I began the new normal - my days would now be spent at Heartland with mom.
The days were pretty structured - which was good - and while she never got into a pattern that seemed to help her improve (at no fault of Heartland staff), I figured it all out in a few days. The hallways were set up similar to a hospital setting - a big nurses station with two wings/hallways (with resident's bedrooms) on either side. Rec room, tv room, family (room for family members to come eat with residents) on one side, then the big dining hall in the center, with rehab rooms down another hall to the left. That side of the building held another nurses station, and two more 'wings'/hallways with bedrooms. A nice outside patio area with tables and chairs also, which we used a lot.
Staff would get her up at 7, clean up, dress, breakfast. Rehab (occupational, physical, everything. She was working on using her hands, moving towels around, using utensils, moving pegs into holes, trying to walk, putting a sweater on, practicing eating.) I'd come in the morning, sit with her through rehab (or sit outside the door due to privacy rules fro other patients, which was fine), walk her (push her wheelchair) back and forth all around the building and outside for a few hours until lunch. Then I'd get her lunch and feed her. More walking, changing, napping, walking, dinner. Then I'd head home. This was my daily pattern. The first few days were just sitting with mom, she was eating a little bit and seeming to be aware and slightly talkative. Then she started rehab, we'd try to get her to stand, to walk a bit, etc. She was eating and could talk and answer questions, even if she didn't know who I was or what had happened. Any time I'd tell her that she had to sit because she had fallen and had broken her hip, she was shocked. "What? I did? Oh my!" She'd cry a bit because she was having a hard time grasping what was going on. She was quiet, but then flipped a switch. She was tired a lot, was in pain, fought HARD every time she had to be changed or have her dressing (from the hip surgery) changed/checked. She was violent with the nurses/aides when they gave her medicine or changed her. I was constantly apologizing and crying. It was awful to see; it was awful to have to hold her arms down and try to keep her calm. We'd both be so exhausted after any sort of activity (getting dressed, moving from the bed to the wheelchair, toileting, bathing, and sometimes even rehab) that I'd lay her in bed so she could shut down and sleep a bit.
 |
| My spot outside the rehab room |
(Alzheimer's is just forgetting things. You can handle that! No. It's not. Maybe the first few years it's easily justified, easily overlooked and explained away....and you deal. You deal with forgetting hoe to answer a phone, how to brush teeth how to open a door. But when things progress, it's not easy. Mom was in her wheelchair at Heartland, and I pulled off to the side of the hallway to pop into the Activities Director's office to ask about how often different things happened. In a matter of three minutes, mom had a bowel movement and proceeded to put her hands down her pants and just get the mess everywhere. Her hands, arms, clothes, face, hair....I walked out (I was 7 feet away) and panicked. Pushed her to her room, got her aide, and we got started cleaning her up. I stood mom up by the sink - she could not stand alone; I had to hold her up -and tried to wash her hands and face while the aide got her pants off and cleaned her bottom half. This took almost two hours. Almost two hours. Mom screamed and fought the entire time, but it had to be done. How can you leave her with feces anywhere on her? You can't. She was gritting her teeth and snarling and screaming at one point - it was the worst thing I've ever had to do. She fought getting her hands in the water, literally fought me. Refused to get them wet. I had to force her hands under the faucet. I was shaking and almost hysterical myself , saying "Mom please. I'm helping you. I'm trying to help you mom, please!" The aide was calm and we got it done. Then I carried mom to her bed and let her nap, she had worn herself out. I sat in the chair and cried. The aide hugged me and said to find the grace in these moments. We do the hard things because of the love we have. Then we move on and keep on. Those aides have a thankless job, and I am grateful that she was there. She spends her days cleaning up after adults who have no concept of what they are doing, who cannot be thankful or helpful or kind sometimes (no fault of their own). I got the nicest card from her after mom died...that meant a lot. She only knew my mom at this awful, sad period of life, but I told them all so many stories and as much about her as I could. They always wanted to know, they always were actively listening and interested. That was nice. One day there were two aides and the nurse with me in mom's room, changing her and getting her medicine ready. I started talking about how I had to go take my daughter to orientation at UF, and that I'd be gone for 36 hours but that my husband and other kids would be in - and of course I started crying. The nurse stopped me and said "No. You stop this. This is why we are here. Your children have to come first, your mom would want that. We are here to take care of her so you stop worrying for one day!" Great ladies. They kept me going that month, thats's for sure.)
I got used to the pattern. I'd arrive, check the road in the nurses station and see which nurse and aide were assigned to mom's room. Then I knew who to go say hello to, ask how the night went, ask about meds, rehab for the day, etc. When she needed to be changed and I could not manage it on my own, I knew who to go ask for help. I got to know these ladies (and a nice male nurse). I knew who to go tell about what and how much she ate for lunch. Everything was charted and tracked. I knew who to look for when I had to leave so they'd keep an extra eye on her (I hated leaving. Mom wasn't watching the movies or the music show or the 'entertainment'...she was sitting in her wheelchair with her head in her hands. Napping usually. She couldn't be alone in her room, so I'd have to leave her with other residents in the rec room.) I had a new place to be a 'regular', and the staff all knew me. The resident's family members started becoming familiar. Sitting with others in the family dining room, I learned their stories. They all understood, and commiserated with me. They noticed mom declining right along with me, and saw my almost panic that it was happening right before my eyes, and there was nothing we could do. Mom went from eating relatively happily, if not much, to not having much interest; to not being able to chew, and hoarding the food in her cheeks like a squirrel; to having to be spoon fed pureed meals. They were experiencing the same things (one sweet woman had been coming day;ly to feed her husband for five years. He could not speak, move much at all, and kept his eyes closed constantly, but when you spoon fed him he would eat. What else could she do? She fed him. And talked to him, and loved him.)
Mom took a few steps forward, but a lot more backward. Slowly it seemed that she was less and less interested in eating. Sleeping a lot more. Always with her head in her hands. I could never figure out if she was in pain, if she was tired, or what was going on. The Dr would order tests; check for a UTI, check for infection, scan her belly and make sure nothing else is going on - but nothing showed a problem. This is what recovery from hip surgery with Alzheimer's looked like. Next she started more therapy to help her eat, because she stopped chewing her food and would just put it in her mouth like a squirrel. So, we were down to not walking at all, not standing, not able to eat, and no talking. She was disappearing, but not quietly. She would cry, scream and screech, moan, or just stare blankly when she was calm. Sometimes she would answer me. Very simple 'ok, yes, no' answers (to questions I didn't even know if she understood'). She would always let me hug her and hold her hand. We'd stay very close. Like I'd pull the chair right up to her bed when she napped so I could hold her hand or just touch her knee so she knew I was there. And I'd say 9 times out of 10 she'd let me brush and braid her hair. I always made sure she had a stuffed animal to hold.
On Monday June 13, they couldn't wake mom up and called for an ambulance to take her to the hospital. I rushed over to the hospital, and the ER Dr. said mom presented as a major stroke. Her eyes were open, she kind of/sort of seemed like she was looking at you, sometimes...other times it was a completely blank stare. When anyone would move or touch her, then it appeared that she'd track a little with her eyes and she would grimace. I guessed it was because she was in pain - that hip still hurt. She was in pain, and that could not continue. The nurse pulled me out and we started talking about moms wishes. I had my bag - the bag I called 'Mom's bag'. I had all my folders and paperwork that I carried all these years. I had gotten used to just leaving it in the trunk when mom was at Harbor Chase, but after the hip, I carried that bag everywhere I went. I kept a few of moms stuffed animals in there too, because it always made her feel better holding one of them. I knew mom didn't want any kind of life support, she had a DNR, she had all her wishes clearly spelled out from 30 years ago when I was in college. The nurse hugged me and I signed all the papers. Dr. Portnova came, and we talked about all options and Hospice. Basically Hospice was the option, and I knew that. Nothing could be done to help mom recover in any shape or form. We needed to focus on keeping her pain free and comfortable. Her body was dying.
That's an incredibly hard concept to grasp sometimes. Her body was dying. It was done. She wasn't giving up - that's not a useful term. When your body is actively dying, shocking the heart and forcing your lungs to breathe with a machine isn't recovering. It's prolonging suffering. And yes, I know that that is not always the case. Accidents happen, and the body needs to shut down processes to heal, etc etc, and THAT you can recover from. I know that. Mom's situation was not that. It had been long struggle the past month for her, and she was done. She had said many times "God take me now" when she was at Heartland. That always stunned me, broke my heart. I hated hearing that - but I understood. She was confused and scared and in pain and nothing made sense. I have no idea what her brain was thinking, if she was even thinking at all. It's just horrible. We decided that Hospice care was what she needed now, and I signed all the papers getting her set up to be moved to the upstairs Hospice wing.
That night I ran home to get things to be with me for the duration. No one knew if it would be hours or days until mom's body gave out. No more IV, no food (she was incapable of eating/drinking), only pain medication. Her breathing was labored and fast, morphine helped calm that down. She seemed peaceful. I started the process of a third 'home', a third time of getting to know all these people who would be talking care of mom.
(Running home that first night to grab some clothes, etc for what was going to be an unknown time in the hospital/hospice with mom. The entire day was standing there discussing Hospice, options, what it all meant, what the Drs thought, what the nurses thought - it was a sad day. I was working hard to be focused task oriented, while holding moms hand, stroking her face, talking to her. I jumped in the car and calculated how long it would take me to get home, shower, have the kids pack for me, and get back. The radio was on and looking at the channels, I notice what is playing on channel 6. Bobby Goldsboro's Honey. Thankfully I was still parked because I just started crying. That was one of mom's favorite songs. I can't tell you how many times I'd listened to her playing Bobby Goldsboro albums when I was growing up. When I was setting up music for her to listen to the last two years, the playlist was all Johnny Mathis and Bobby Goldsboro. This was my sign that it was ok. Hospice was ok. Mom was ok. Kairos moment.
And it was in the early Spring
When flowers bloom and robins sing
She went away
And honey, I miss you
And I'm bein' good
And I'd love to be with you
If only I could
Every eight hours a new nurse would begin a shift. I got lucky that for the five days that we were there, I had the same nurses rotate through. They were all wonderful. All asked a lot of questions about mom, talked to me, kept me company, checked carefully to gauge mom's pain or comfort level. They'd clean her, change her bedding daily, and talk to me about what changes I'd see. Dr. Portnova came every day and adjusted mom's morphine if her breathing was too fast - but by the third day we were all just watching and waiting. Holding vigil, as they say. Devotional watching, and that's exactly what it is. There is simply nothing left to do except being there, and that's hugely important. I refused to leave her alone. I was not going to let her have a moment of possible fear or worry if for some reason she was aware of what was happening. Tim and his mom, and Lindsey came and relieved me for when I needed to take a break to shower. I slept in a reclining chair by mom's bed. I ate in that chair, I pulled it close to her bad and held her hand and just talked to her. This was the final thing I could do for after the years of caring - I was going to be there to see it through. I needed to NOT leave her. I was so sad. I did not feel guilt, or remorse - I felt anger that she had to go through this, and sadness that I wouldn't have my mom around anymore.
When you're dying slowly like this, the body starts shutting down unnecessary processes. That's why there's no worry that your loved one is hungry or thirsty - that need is gone. The brain works on keeping the heart beating and the lungs breathing. The hands and feet get cold. The skin starts to mottle where blood is pooling because it's not circulating as much. Things like this. Daily the nurses would come in, we'd check moms ankles, knees, fingernails, to see what changes were happening. They always kept pillows between her knees and feet to keep her comfy, so no bone on bone touching was happening. The last two days I told them that it was ok not to bathe mom - it seemed too uncomfortable to move her around and I didn't want that. I kept brushing her hair and cleaning her face. I'd keep talking and playing music for her. I just talked and talked, a lot of times just discussing nothing spectacular, other times making sure I let her hear how special she was and what a great mom and Grandma she was. I'd watch her face for any sign of alertness - any eye movement, and gasp, any chance that she'd open her eyes, look at me and let me know she knew I was there. I don't know if she heard me, or if she knew it was me touching her. We had no final wakening, no alert final moment. I'm ok with that. We had a lot of special moments over the years, those will do. I choose to believe that she felt my presence and it was comforting. Being there was comforting to me, so hopefully she felt it too.
That final morning Grace came in to say hello. She was the day nurse Tues, Wed and Thurs, and was off Friday. She came in to check on us and tell me that she was on duty but wasn't assigned to mom today, but wanted to see how we were anyway. We chatted for a bit and she left. Mom's breathing was slowing. I just sat there and watched her, and quietly talked to her. I had said a million times that we were all ok, that's we'd be ok, that she had done a great job and we would miss her forever...but that it was ok to go. It was ok to move on to the next place, that I would be right here with her and that I was ok. I think that as a mom all you want to know is that our kids are ok. Thats' it. Are my kids ok? Then I'm ok. I wanted her to hear it from me that we were ok. We loved her and were ok. And then she took her final breath and died.
I sat there and had a good cry. I kept rubbing her face, her hands, talking to her. Then you think "what do I do now?" so I walked out to the nurses station to find our nurse. He was on a phone call but Grace saw me, stopped what she was doing and just and ran over. She knew by looking at me that mom was gone, and just hugged me and kept her arm around me as she said "I've got it" to the nurse assigned to us. We walked back to mom's room, and she did everything that needed to be done. Removed all equipment, cleaned up blankets, etc to make thing look comfy, I think she got paperwork together (that I didn't really see) and she just stayed with me until Tim and the girls got there. Truly an angel on earth that day. Other nurses came in to hug me, pay their respects, just check on me. Incredible people. I made some phone calls - my sister, my dad, my aunts and uncle. Betty and Bari. My sister took over the cremation details - made the calls and handled it all. And then we were done, and it was time to go. They would not remove mom from the room while we were there. They said stay as long as you want, and a nice quiet man just waited outside to take her body. It's surreal when everything is just over. It's just done. After all that constant stress and panic and worry...it's over. She's at peace, right? No pain. No more confusion. No more fear. No more pain (obviously the important one for me). Should this be a relief? It's expected right, so it shouldn't be so hard...right? But it WAS hard. It WAS incredibly sad. I had to say goodbye to my mom. I will never get to hug her or hold her hand or just talk to her again. With Alzheimer's you have a long slow process of getting over the thing you will miss - when they forget who you are, it's painful, but then it's ok. They're still here. Every step, every decline along the way is hard, but you get through and accept it for what it is. When death comes, it's just so final. The sadness is from what you're losing. I've missed parts of her for years but now that she's gone, I just miss HER. I'm lucky I had her. I'm lucky I got to take care of her. I'm lucky I got to be there at the end. I just miss her.
I have no nice ending for this little story, no nice way to wrap it all up with a bow and present it you anyone. Alzheimer's is sad and messy and ugly, but the people it affects are not. My mom was a great lady. Simple, easygoing, a happy person who never wanted much. She was always happy with what she had, never looked for more or felt like 'what about me'. I like to think that I live my life like that too. I'll work on my garden and have a lot of pets like she did, and honor her memory by remembering that it doesn't take much to be happy. Just be happy. I'm lucky she was my mom.
