Rest in Peace, Beautiful

My Grandma passed away at 3:30 this morning—July 29, 2011. She opened her eyes wide and took a few last breaths. My Mom and Dad were there with her when she went. Her last week was fairly peaceful, which in some way was harder to witness than her constant agitation because it meant she would be leaving soon. For days she didn't eat or drink, didn't talk, no longer held my hand while I held hers.

One day last week she started crying when I arrived at the hospice and said, "I guess I have to say goodbye to you. But I'll see you again in heaven." It broke my heart, yet amazed me. She spent so much time in a world of dementia that I didn't know if she could grasp what was happening to her, or if she did I wondered if she could find the words to communicate about it.

The sense of relief that I thought I would feel has yet to come. She had been suffering physically, mentally and emotionally for quite some time, and wishing for mercy for her had become my state of mind. In my rational thoughts on this matter I had strength. I was ready for her to go. I said this daily to friends.

For months I have been anticipating a giant sigh of relief. But now, I just feel loss. The house feels emptier today even though she had already been away in hospice for a month. I sat on the deck this morning drinking coffee and watching the bird feeder like we used to do together. I lay on her bed and sobbed. I kissed the wedding photo of her and grandpa, I apologized for all of the times I screwed-up while I was with her. I thanked her for this opportunity.

I think now of how I'll never get to have her potica ever again, even though she hadn't been able to bake for the last couple of years. I think of how long it would take her to walk from the toilet to the shower in the morning and of how I would smirk at the cute little s-curve of her wrinkled little bum as she ambled the ten feet with her walker. I want to make her some bread and butter—her favorite meal.

I miss you Grandma. Thank you for this rare opportunity of when my heart is bigger than my brain and I get to feel instead of think. I love you Grandma. I hope you are with Grandpa, and your Mom and Dad. Thank you for everything. I miss your song.

I have procrastinated and avoided blogging for well over a month now. But it's time I have to give an update. On Wednesday night of last week (June 22) I had to call 911 to come and take my grandmother to the ER. By the time the EMTs arrived her heart rate was 24 BPM. We could have lost her that night. She flat-lined at the hospital and they kept her alive for a while on an electric current. It was the most horrible thing I have ever had to watch. Electric shock after electric shock just keeping her heart beating. If it wasn't for that current she would be gone. It hurt her. She was yelling in pain to make them stop. But instead she was given morphine. Within an hour doctors put a temporary pacemaker in to see if it would work. For many reasons we had decided that we didn't want them to insert a regular pace-maker and we ordered a Do Not Resuscitate document.

Ironically, Grandma never had to use the temporary pacemaker. They removed the device last Saturday and noted that her heart had never used it while it was in her body. They had it set to activate if her heart rate dropped below 62 BPM and it never did. The cardiologist informed us that her heart has complete blockage and it would most likely be a matter of days until it stopped working. None of us, nurses and doctors included, can understand how her heart is still working.

On Sunday we got my Grandma admitted to McCall Hospice House of Greenville. It is sad and yet it is a relief. Hospice is a place people go to die "comfortably". They try to keep Grandma as comfortable as possible while letting her body go, no longer keeping her on all of the medications that have helped keep her body going for so long. My Aunt Rita arrived from Minnesota on Monday afternoon and has been living in the hospice room with Grandma all week. My mom is there with her all day, too, but then goes home at night. I have been there most days for a few hours at a time, but I skipped Wednesday and Friday.

On Tuesday I sat on her bed with her and she played with me for a while. We made little monkey faces at each other and did this little thing where we go dead-still for a moment and then say "Rawr!" or "Boo!" and pretend to scare each other. As I write it, it sounds like a cruel thing to play with a heart patient! But I swear, it was cute and it made her laugh (and she started it!). We held hands and hugged and then she went to sleep. When she wakes up she gets very fidgetty and the nurses end up giving her "something to calm her down". Sometimes it works and sometimes it doesn't. They've said that when people are at the very end there is very little you can do to make them sleep if they don't want to. They can give morphine to the point where one more mcg would kill them and they still won't sleep sometimes.

Grandma is eating very little and is now mostly sleeping. I'm not sure how much longer she has. As I said, we are not sure how her heart is still working. She has so many reasons to let go, and yet she still hangs on. She can barely see, barely hear, has dementia, is crippled to the point where she could only walk a few steps with the walker (not at all the last couple weeks). At home she was having seizure-like episodes for about two months. We saw a neurologist who prescribed seizure medicine, but now the doctors say the "seizures" weren't real seizures but were related to her heart and having too low of blood-pressure most likely due to her high blood-pressure medication.

I cared for my Grandma at home for one-week shy of three months. It has been an amazing experience and an emotional roller coaster. This past week has given me some much needed time to myself. And I feel so guilty for feeling relief at not having to "deal with her" on a 24-7 basis. Saying it that way sounds cold, I know, but that is how I came to feel. The last month she was really beyond the kind of care I could comfortably give her at home. That is easier to see in hindsight, because it's so easy to question yourself and the situation when you're in the middle of it. Am I just having a bad day? Is she just having a bad day? It became a struggle for both of us. Almost everything I did to "help" her actually physically hurt her. I had so many moments of reflection where I just felt guilty and lost for not being able to do a better job. She would just want to stay in bed and sleep but I would get her up and shower her and fix her hair and get her dressed and make her meals, only to have her have those heart-seizures from the over-exertion of activity and yell at me for hurting her and have her cry when I begged her to eat something. Then at night she would be up all night yelling and screaming for me to come to her every 15 to 30 minutes. It would make me so cranky. So, so cranky.

People always complain about nursing home care. The patients always look unkempt, and the nurses drug them "so that they (the nurses) don't have to do anything else". I honestly don't know what else they could do for a lot of the people. I experienced how hard it is to please someone who has gotten to where my Grandma is now. Anyway, after weeks of not writing, there are lots of thoughts and emotions trying to pour out of me, but now I want to get over to the hospice house and see Grandma. I miss her.

It's funny that despite all of the hard and trying moments I had with her, all she had to do was smile or laugh or look at me and say something sweet and grandmotherly and I would melt and it would make everything okay for a little bit longer. I felt that the other day when she played with me on her hospice bed. I am not sure if we'll ever get another "connection". If we do, I will feel blessed for sure, but mainly now, I want her to get to stop suffering.

Happy 95th Birthday Grandma!

Today was Grandma's 95th birthday. She had an incredible day. There is a lot more to say about it, so I'll write an update tomorrow when I'm not so tired. I at least had to post "Happy Birthday" on the blog before the day is over.

The Tourist

You know how it is when you have a house-guest visiting from out of town? Not your best friend, but a random friend, an acquaintance? You try to show them a good time, introduce them to your close friends and hope they'll integrate well, make them feel at home in your residence, and at the same time you have to continue with your own day to day responsibilities.

They've done their Google-ing and Yelping and maybe they've even brought a travel guidebook along. Therefore they ask silly questions—about your town and about you. They are armed with random facts and tidbits so obscure, academic or irrelevant to daily life that you either have to do your own share of Googl-ing or more fun—make stuff up. The quantity of questions after a couple of days is closely proportionate to the ounces of alcohol I have to consume in order to keep my sarcastic answers to minimum. I have a low tolerance. Then when you duck away to go to work you can only hope your answers, their search results and their Encounter guide will keep them smiling on their daily adventure.

I have not yet had the pleasure of having a house guest in Fountain Inn, in-fact I've had very few visitors in general, so I get a little more-than-usual of my entertainment fix from movies. Last weekend I called my sister to come over and watch a movie with me, but her husband and kids were away for the weekend so she opted for some much-needed alone time. When I asked her if she wanted to come over and watch "The Tourist" with me her response was nothing short of amazing. She asked, "Is that what we're calling Grandma these days or is that the name of a movie?".  I laughed harder that I had in a while, mainly because my sister was serious, but also because it hit me how befitting it is to an Alzheimer's patient trying to get by in "our" world. They really are mostly lost most of the time in a foreign land. And the trains that run back to a safe, familiar place, do so with decreasing frequency, sans schedule.

From what I've read and have been told by friends who have experienced this horrid disease with a family member, my Grandma is just like the rest of them. It's like they all took the same tour, and came away with the same food stained T-shirt. They also all have the same guidebook printed in a language that most of the rest of us can not understand. And their questions and comments—wow...all day long. Where are the kids? Are those cars or cows? Look at all the cars! Look at how tall the trees are around here! Have you seen the kids? Is someone crying? I'm 94 years old. I'm 54 years old. I AM NOT 94 YEARS OLD!!!! I want my Mumma! (One can age decades and find the fountain of youth all within a matter of minutes). I wonder where everybody is. Where is everybody? Are you gonna take me home? (Asked every time we return to our house, where just the two of us live, after going anywhere).

And then there are the stories "from home" that they like to tell. My grandma told me the other day about the time I got shot when I was a baby and how she cried all the way home. And of course there is the repeated story about the lady at church who shot grandma in the wrist, and how the priest punished the woman. The other day grandma was shot in the mouth and then there was the time my grandpa got shot in the field. If you listen long enough you'll probably find you've taken a bullet or two yourself (or you'll want to by the time you go home).

As anyone who lives in a famous city and the well-traveled know, there are travelers and there are tourists. And we've all been tourists. Whether it was our first trip to California or our first trip to Japan, there is that time either you realize (or you don't, but everyone local realizes for you) that you are wearing the wrong thing, saying the wrong thing, taking too many photos of the signage and menus, or worse, you actually can't figure out how to use the toilet. At a point in life when I felt I had earned the status of traveler, pretty much internationally, (yeah, ignorance is bliss) I became the worst kind of tourist. Driving across the middle of Bali on the way to the east side of the island, I had to make a two-sie. We asked our driver, Katut (of course. now knowing), to stop at the nearest toilet. He pulled over on the side of the road next to a shack where a woman was doing field work. After smiling and smiling and asking for me in Balinese if I could use the toilet the woman replied and smiled and smiled and pointed me toward another small shack. I crossed a small field, walked in, two chickens ran out.

I had to go bad.  It was blindingly bright outside. There was no door to the shack, but the little light that leaked in and the contrast in the otherwise unlit shack made it hard to see exactly what was going on with the two troughs of water, one with a wooden ladle. I doubt a light would have helped my western-toilet reasoning mind much anyway. There was no tp, of course. I had absolutely no idea what to do. I still don't, so to this day I am horrified by the thought that I most likely defecated in their drinking water or at best used their dirty toilet water to wash my bum, with the wooden scoop that may have been their drinking water ladle. I can image the stories they tell (if they are still alive to tell stories), and I imagine tourists taking photos of the sign in the middle of nowhere that reads, "No Public Restroom", in English.

There's nothing like a foreign restroom to turn one into a tourist. In fact Grandma encounters this on a daily basis. I drive the wheelchair up to the narrow bathroom door where she has to disembark and use the walker to get to the toilet. Nine times out of ten she has to ask for directions, and when the trip involves a twosie, well, let's just say it's one of those adventures-gone-wrong, but everyone gets out alive, if not weary. And thank god for adult diapers.

I apologize for the potty humor and the detail and the fact that there is likely to be more in the future. Hygiene and restroom duty is a major part of care-giving. It's a reality that many of you will be faced with in your life, kinda like getting your "junk-touched" by airport security.

I could run with this Tourist/Alzheimer metaphor ad nauseum, but this tour guide needs to eat. You are now free to move about the interweb. Please come visit us.

Happy Would-Be 74th Anniversary

Today, May 1, 2011, would have been my Grandma Helen and Grandpa John's 74th Wedding Anniversary. Grandpa passed away in August of 2001, so they had 64 and a half years of marriage. If you read my last post, you got to see some amazing pictures of them in the 70s, and you know how much she misses him. I didn't take her to visit his grave today. Oddly, it didn't cross my mind until right now and now I feel a little guilty. But I did ask her some questions about how they met and how he proposed and I got some answers that I never knew before.

*As always on this blog, to see the photos larger you can click on them and then use your browsers "back" button to get back to this post.

First I asked, "Grandma, how did you and Grandpa meet?".

She looked at me puzzled, so I then asked, "Helen, how did you meet your husband?".

I am learning from some online reading and from a couple of books that Alzheimer's is actually causing the patient to think they are in an earlier period of time sometimes. It is why they often can't recognize people. If they are in their 40s in their mind at the moment, they will have no idea who you are and "Grandma" will make no sense. I've learned so much in the last month, and day to day understanding is much better for me now.

So, anyways, she told me that they met at a dance when she was 18. He was a good dancer and she was shy about dancing because she had big feet. But she had fun. Everyone loved him because he was so much fun and liked to sing and dance.

Then I asked her how he proposed. I really wasn't expecting to get much of an answer on this for some reason. Maybe because no one in my family has a good proposal story. Well, this is what she told me...

She was baking and her hands were covered in flour. He walked up and said, "Let me see those hands!". She laughed and held out her dusty hands and he rubbed them back and forth between his hands and then he said,  "look at them now" and she looked at her palms. He said, "Turn them over!", and when she did there was a diamond ring on her finger. And he asked, "Will you be my cook?". And she said, "I'll be your cook and your baker if you'll be a good husband". And that was that. She said they were engaged about 8 months. They were married a few weeks before her 21st birthday in 1937 in Gilman, Wisconsin.

Now, my grandma has a lot of trouble with words these days. He may have asked, "Will you be my wife?" or "Will you marry me?". Who knows now, but it was a cute story and she enjoyed telling it.

They had 8 children, 26 grandchildren and numerous great grand-children and great, great grandchildren. Happy 74th Anniversary. They're still together in her heart and in her mind, so I think that's still reason for it to count.

And speaking of anniversaries. Grandma and I had our one-month living together anniversary on Thursday. More soon.

xo,
B

Some Amazing Old Polaroids and Visiting Grandpa's Grave for Easter

My sister and brother-in-law had Grandma and I over for Easter dinner today. They made a lovely meal and Grandma enjoyed seeing them. When we were driving away she told me that they were a nice family and she would like to have them over to get better acquainted and make them a potica (a Slovenian dessert she used to make). And while we were there she told my sister she was going to have to find a ride home because "one of the Perbilsky boys" had given her a ride over there (I drove her, of course). So, her mind was not really getting into gear today.

On our way back home we drove past a random row of houses and she said, "My husband died in one of those houses". Not at all true, but I just nodded and kept on driving. Ten minutes later we were driving past the cemetery where my Grandpa is buried and I decided on the spur of the moment that I should take her to visit his grave because she hadn't been able to go there for a long time while she was in the hospital and then the nursing home, and she is Catholic, so Easter is an important holiday to her. As we drove through the entrance she said, "This is where my husband is buried." I couldn't believe she could recognize it! I mean, she doesn't even recognize the house we live in together as the one she lived in for 9 years before going to the nursing home. Even though she had said the random house was where he had died, I do believe she really knew he was buried at the cemetery.

And somehow I knew where his grave was even though I had only been there for the funeral 10 years earlier. I was so hesitant to take here there, but it didn't feel right to ignore it for my own convenience either. I don't know if bringing her there was the right thing to do or not. But I asked her if she would like to go to his grave and she said yes. So, I got her out of the car and wheeled her over. We stayed for about ten minutes and she cried and talked to him the whole time. I cried. It was so heartbreaking to hear how much she misses him. She's cried about him ever since he died, but being at his grave brought it out from a little deeper than I'd seen in a while. On the tombstone, right above their last name "Prasnicki" it says "Together Forever", and I just hope they can be together again.

We left and drove over to my parents to get their newspapers and check on the house and then we drove another 15 minutes into Simpsonville for ice cream. She did really well the whole way. But when I got back in the car after going inside to get ice cream she asked me if Grandpa recognized me. I said, "no, I don't think so," just to play along since that is the current advice to people dealing with dementia. We finished our ice creams, but she kept saying "I wonder where he is." And when I couldn't find the car key for a minute she said, "oh, John probably has it". Then it went downhill. She was convinced that he was there in the bathroom and that we had left him. She cried and yelled at me the whole way home about how she couldn't believe I would just leave him there. I tried to reason with her and tell her he was dead and that we had just visited his grave, but she wasn't hearing me. It wasn't getting through.

I got her home, took her to the bathroom and put her to bed right away. The tears were dry when she hit the pillow, so hopefully she'll be fine in the morning. Well, after I put her to bed I decided to look through some of her old photo albums to see if I could find any cool old photos to put on the walls. I found these gems!

Wow. She and my Grandpa John used to love to go on road trips and they loved to fish. I never knew they took a trip to the Bahamas in the early 70s before I was born, but I found a couple of Polaroids from there. The one of them by the airplane is so classic! There is also a shot of Grandpa with a fish and their son Steve (I think) in the background. He looks like he could be one of my modern day friends. Steve is my uncle who died of leukemia in the 70s. And I absolutely love the blurry shot of Grandma with the fish she caught.

Seeing theses photos today made me understand her pain so much more. She lost the best friend that she had through her whole adult life. They had eight children together, traveled, worked hard and even got themselves to the Bahamas when that was a luxury for the rich (which they most definitely were not). In this moment I think I am the most envious I have ever been of long lasting love between a man and a woman. These photos and the pain I saw on my Grandma's face today made me understand something I didn't think I could comprehend since I've never felt it for myself. I don't have any concrete beliefs about what happens after we die, but right now I hope more than anything that my Grandpa is there waiting for her on the other side.

Grandma Sings a Couple of Tunes

My grandma has a couple of songs she likes to sing. Back in the day, she and my grandpa were very into polka music. My grandpa played a little accordion and they both would sing. Now, as her dementia takes over, she can't get through all of the verses, and she makes some up, but she tries hard and she enjoys it. I shot some video of her out on the back patio tonight. Sometimes she does better than she did tonight, but you never know what you're gonna get with her from one moment to the next. Tonight when I tucked her in she asked me to call her parents to let them know she was staying over because she didn't want them to worry.

Please pardon my rookie DSLR and iMovie skills...