Aside from my MS, I've never really experienced a true crisis in life. The MS was something I was afraid to talk to others about, so I mostly kept it to myself unless you were very close to me.
Now, my mother's died, and it feels like a real crisis, but I've been so buoyed by others' support....I feel like I'm bobbing in the ocean...feeling lost and rudderless... and friends I've known at different times of my life are all reaching out to steady me on a life raft of support.
Friends of my mothers who responded to the group email I sent out to share how they met my mother and what she meant to them. My own friends, who have told me they're coming to pay their respects. I am myself afraid of wakes, and seeing dead bodies, so for someone to tell me they're coming kind of makes my heart leap with gratitude.
I just got a random call now from my neighbors. We never really hang out together, but we periodically have these long talks on the phone where I feel like I can tell her anything at all. She told me they'd be there even though I didn't ask them to come as I don't want people who might feel like I do about funerals that they have to show up.
And then of course there's all of YOU who have touched me with your comments. Thank you, friends.
I want to share with you one of my favorite photos of my mother, taken just 2 years ago. She's wearing her favorite turquoise shirt with her turquoise nugget necklace that goes so well with her blue eyes. I love this photo because, somehow, the photographer brought out her kind and gentle spirit.
I feel so uplifted I'm worried I will do a nose dive after the funeral when all that support gradually goes away. Guess I'll cross that bridge when I come to it.
Archive for December, 2015
Aside from my MS, I've never really experienced a true crisis in life. The MS was something I was afraid to talk to others about, so I mostly kept it to myself unless you were very close to me.
I hope she is in a better place now.
These past few days I really had to push myself to see her. Because while she was there in body, she was not present. They upped her morphine to 4x daily, so that probably accounted for some of it. It's been very difficult to see her like that.
Yesterday, I nearly didn't go, but then I asked myself how I would feel if she passed that day, and I knew it would upset me if I hadn't seen her. So, remembering what a staff nurse told me, that hearing is the last sense to go, but against the advice of the hospice nurse, I went back again yesterday. I just kept telling her how much I loved her, that she had lived a wonderful life, that everything was going to be okay, and that I would continue to exhibit her work. I don't know if she was aware of my presence at some subconscious level.
I left there around 2:30 pm and about an hour later, I got a call from Masonicare telling me she'd passed.
I am feeling a mixture of relief, sadness, regret, loss, pain, panic and dread of living the rest of my life without my mother. Relieved... the last time she told me I love you back, it was maybe 5 days ago, and it was hard for her to get the words out. It was like she had a mouthful of cotton. I believe she was losing the ability to speak and form words, and even without much memory, that must have been very frightening.
I called my sister first, and without rancor told her, as gently as I could, that Mom was gone and that I would let her know the details of the funeral as soon as I had them. She didn't have much to say, nor did she offer to help -- I didn't ask. Then I called my dad and the funeral director. I emailed the monument guy so he had the end date for the stone. I spoke to my mother's two cousins and traded emails with a third. I sent out several group emails I'd composed a week or so ago informing friends, fellow artists and patrons of the arts of mom's passing, using names I'd culled from her address books.
It was difficult to tell a casual acquaintance from a close friend, but hopefully I included everyone who was important to her. I got a few Christmas cards yesterday from old friends in Jersey which had been delayed because they were sent to her old address. I found their numbers in the phone books and called both, explaining what happened. I called a few friends of my own.
While no one seemed to know she had Alzheimers, a few said they thought something might be wrong because my mother hadn't sent a Christmas card the year before or if she had, she only signed it without including a newsy message.
After the initial shock, I find that I am not falling apart as I imagined I would. Truth be told, I've been mentally preparing for this day for weeks. I've cried daily for many weeks, often on the ride home from Masonicare, and it would take me a full day to recover some semblance of normalcy, only to return the next day and repeat the process. In an effort to hold my mother close to me, I've been wearing her clothes and her jewelry for some time now. I know the tears will return but for now I am just sad. Keeping busy has always been my antidote to pain.
I emailed my 2 managers at work, and someone I was supposed to interview tomorrow for a case study, letting them now I'll be out until probably mid- next week. Most people are out this week anyway, extending the holiday season.
I am still trying to get a hold of the Lutheran pastor here to see if he can do a service. It will be limited to family, and that means probably just 3 of us, including my dad and sister. Not sure my sister will come; she has a history of avoiding unpleasant situations, but I think my dad will, to support us. I sure hope so.
I have to meet with the funeral director this afternoon to sign some paperwork, and before that I want to clean out my mother's room at the nursing home. I don't have to do it today, but I want to get it over with. And say goodbye to some favorite staff, if they're around. I hope to stop at the florist and decide on some floral arrangements. I want the obituary to appear in the papers before the funeral, but not have too long a delay, so am hoping for a Saturday or Monday funeral at latest. Friday being a holiday sort of messes things up.
I've been reluctant to travel far but i did need to get gas for the car, so I drove to one of the lower priced stations I often go to. At the pumps, I saw a very old woman digging for cans in all the trash bins. I am not in the habit of giving money to homeless people or others who appear hard up, I guess because I wonder if they'll use it to feed an addiction, but this woman was just too old to be doing that. If she was my grandmother, I would want her to be home with her grandchildren sitting inside a comfy home and nibbling on Christmas cookies.
I walked up to her and said hello. When she looked up from what she was doing, I stuffed a wad of dollar bills in her hand. It wasn't much, as I've long ago stopped carrying much cash with me. I wished her a Merry Christmas and walked back to my car after she thanked me and continued digging for cans. My mother would be very proud of me.
After I drove off, I actually thought I should have invited her to lunch at the nearby Friendly's. I don't know if she would have gone, or even if she was as destitute as she appeared. I guess my protective instincts are in high gear right now.
I stopped at BJs and returned a label maker I'd bought on sale there. Took a walk around the neighborhood and found that the Garmin VivoFit 2 i just bought myself is no longer syncing with my computer, so I can't update the steps I took today.
Saw my mother...her old neighbors dropped by again. I don't know what drives them to continue to visit my mom, as they are neighbors, not family, but I do appreciate it so very much, these people are golden. Because it's been mostly them and me visiting mom. As recently as Dec. 13 they brought their dog and sat him on her lap, and she smiled. But she's not doing well now and is on morphine 3x a day. She has remained in bed and they are turning her periodically. She had just a few bites of food i think on Dec. 22. I can't imagine she will last much longer. I don't know if she knew I was there. She seems to be in some distress and they are trying to address that with the morphine.
Then, I got a bill from my mother's old Amex card. I never cancelled it becus they required a written letter and I just didn't have the time for it. I cancelled her internet and phone service last May, and even went to the trouble to undo the auto billing of her phone/internet to her Amex card.
So why Frontier Communications billing $60 onto the card is beyond me. I already spoken to Amex who now agreed to cancel the card over the phone, since i'm the account manager now, and dispute the charge. I called Frontier, who said they saw no such charge on their end and then she transferred me to another area, only for me to get the message they were closed. So I'll have to call the idiots back again tomorrow. Like I have time to straighten this out.
I was scheduled to go on a group hike tomorrow at a state park about a half hour from here. I had really been looking forward to it but decided to cancel, reluctantly, as I feel uncomfortable being so far from home, in case I get a phone call.
I did my end-of-year income and expense crunching a few days early. There are often little surprises and discoveries the numbers reveal, and this year was no exception.
Here's the big picture: I had $31,067 in expenses this year while my income netted $43,178. (I'm diverting quite a lot of my paychecks to my Roth 401(k). So in addition to the 28% of paycheck I'm putting in the 401k, I also saved $12,111 in taxable monies, exceeding my goal in my sidebar, IF you don't count my one capital improvement this year, the redo of my front entry/stairs. I paid for that out of savings.
But anyway, the more interesting findings have to do with what I spent money on, and how that compares to what I spent money on last year.
Here are my 2015 expenses, ranked from highest to lowest, with some additional commentary by me:
Masonry front entry: $9,800
This was my single biggest expense this year, even though this particular mason was cheaper than the other two who quoted me prices. BUT it was so worth it and I appreciate what they did, and how it enhances my property, every single day, coming and going.
Side Note: While on the subject of capital improvements, I am thinking that 2016 might be a very good year to finally get my driveway repaved, given how low gas and oil prices have fallen. Asphalt is a petroleum product, although I imagine the labor end of things will still be a factor. I will start calling for estimates late winter/early spring. I may go with asphalt on the hill portion of the drive but do gravel at the top where it levels out. I am concerned with leaves getting in the gravel and it becoming difficult to clean them out, plus i wonder how snow plowing or even using a snow blower on gravel would work. Still, you don't have to worry about cracks developing in gravel and it looks so much better. The stone won't wander into the lawn because I have stone walls and one side of the garage surrounding the area that would have gravel on 3 sides.
Property taxes: $5,832
Property taxes account for 14% of my total spending, and is about what I spent last year. I would love to lower this figure by moving to a small condo....someday.
For much of this year, I felt I really wasn't paying attention to prices in the supermarket; if I saw something I wanted, I bought it. However, my figures show my food bill is up only 6% compared to last year, so I guess I wasn't as out of control as I thought I might be. Keep in mind I went vegan mid-way through the year, but things like organic fresh produce and nuts can be very pricey. But to think that I am averaging $331 a month on food as a single person is kind of mind boggling.
OK, spending on my cats this year was way, way up, 68% more than last year. That's because I chose to bring Waldo to the exceedingly expensive 24/7 emergency vet specialists in town when Waldo stopped eating, and he was eventually diagnosed with hyperthyroidism. Having 6 teeth pulled last fall added another $1,000 to the overall bill, but the cats are so worth it.
This is my only "catch-all" category into which I put expenses that don't seem to fit elsewhere. Meaning, these are non-consumable items I buy for the house in general, whether it's a new kitchen appliance or a dishtowel, this is where that kind of expense would go. Spending in this category is down 10% from last year.
Health insurance: $1,782
This is a very pleasant outcome of my becoming a permanent employee of the bank, instead of a contractor. Last year, my health insurance premiums were the #4-ranking highest expense. But my premiums in 2015 made my expenses this year 27% lower than 2014, and I can expect greater savings in 2016 thanks to the wellness incentive I'll be getting ($20 a month) off my premiums after getting a simple BMI and cholesterol check. A no-brainer.
Lawn and garden: $1,230
This is a rather hefty new expense for me; it's almost all due to my having my lawn cut for me every week instead of doing it myself. But again, SOOO worth it, in terms of time saved for more enjoyable tasks and not having to kill myself trudging around my 1.5 acres on a sweltering summer afternoon. I plan to continue this next summer.
I DID, though, tell them to stop cutting a little bit early, maybe 4 weeks before the tail end of the mowing season in November. (I emailed them to stop, and wrote it on a bill payment, but still they showed up so luckily I was home and could tell them in person to STOP. Maybe a language issue there, not sure.) By that time, we were into fall and the rate of growth was much slower, meaning only a few more mowings were needed, which I really did because I wanted to mulch the fallen leaves, which I noticed the professional mowers did not do well with their blades.
Fuel oil: $$1,181
Thanks again to falling oil prices, I realized a 23% savings in heating oil; since heating season extends into the new year, I will of course continue to enjoy savings. So last year's #5 greatest expense is this year's #8 highest expense. Nice.
Dining out: $923
Expenses here increased 4% from last year. Mostly due to relying on the building cafeteria when I don't have time to make lunch. Having reduced my in-office work days from 5 to 3, I hope to lower this expense in 2016.
It seems my biggest increases occur in utilities over which I have less control. This is a 19% increase over last year, but I DO know this number will fall in 2016 as I recently locked into a lower per kilowatt fixed rate for the next 12 months. Here in Connecticut, you can (and should) choose your electric provider, not once, but on an ongoing basis as most fixed rates (there are also variable rate offers) are fixed for 3, 5, or 10 months, typically. To enjoy reasonable electric rates, you have to have good timing and pick carefully.
Gas for car: $783
Happy to report this number represents a 38% decrease from last year, no only due to falling gas prices but also because I'm only commuting in 3 days a week.
Car insurance: $733
This is a 4% increase over last year and while small, it bothers me a lot since I continue to have a perfect driving record and my car is one year older this year than last. I know this is how insurers reel you in; to get you to switch from your current insurer, they give you a great rate...for the first year. Then you'll see steady increases until they, too, need to get the boot. They count on your complacency or general busyness with life not to notice your bill is creeping up. But they haven't met Patient Saver!
This is up about 11% from last year, because I upgraded to the next broadband speed to make working on my office laptop a little less painfully slow.
Homeowners insurance: $687
Up about 18% from last year, this is another bill that rankles me since I've never filed a claim.
Out-of-pocket medical: $670
Happily, I had few reasons to see a doctor this past year aside from the routine stuff so total expenses in this category are down 42% from last year. May it continue.
This was my priceless 2-day solo getaway to a Massachusetts beach town. I still think about that lobster roll sandwich.
Car tax/registration, license: $549
These expenses are up 18% from last year and I hate having to pay such high fees just for the right to drive my car. Grr. Owning, maintaining and operating a motor vehicle is so expensive, if I lived in an area where one wasn't absolutely necessary, I would ditch the car.
This is home maintenance, down 53% from last year. It's down, not because my home needs fewer repairs, but because taking care of my mother consumed all, and I mean ALL my free time.
This figure is up 65% from last year, but it's so small overall I'm not going to worry about it. I usually just put book purchases in this category, but a chunk of it was for an online dating service a while back.
Wow. I thought my spending on clothing would be way up this year, but there again, my sense of what I've been spending is not always accurate. Compared to last year, my clothing purchases fell by 50%. Then again, when I get my credit card gift cards, I often get them for stores like Kohl's or Macy's.
Total spent on other categories like: Gifts, Water, Sewers Borough taxes, Car upkeep, dump sticker, haircuts, subscriptions, charitable donations are not reported here because they're pretty small. Most were about the same spend as last year.
The car is a 2013 so it's mostly been just oil changes so far, but my 30,000 mile checkup is about due. I just learned from the dealer they will charge over $400 for mostly routine stuff for this 30K checkup so I will have to find a way to have it done by my mother's mechanic, which is hard because, unlike the dealer, he doesn't have a comfy lounge with TV and drinks, a shuttle service to nearby shopping or anything else.
One other notable thing to mention is that I did make a small charitable donation to my local volunteer fire department. I haven't made any kind of donations for quite some time, though in my defense my 4 years of underemployment only recently ended. I believe very strongly in supporting my local community first, and these guys will get up in the middle of night to rush to my home if there's a fire, so I think they deserve my support. They will pump out a flooded basement and not charge you too.
In summary, I enjoyed significant savings over last year in the categories of health insurance, heating oil, gas for the car and out of pocket medical expenses while I paid substantially more in the categories of my cats, electricity, homeowners insurance and miscellaneous car taxes and fees.
Of note on the income side, I made $641 in credit card cash back rewards without really trying too hard, and that's not counting all the gift cards ($500 in gift cards from one credit card alone). I also earned Amazon gift cards worth about $360 from 3 online forums I'm active in, although my favorite, an AARP forum, has ended.
All in all, it was a pretty good year, financially, and I'm grateful for all that I received.
Would anyone care to join me on January 1st as I embark on taking one daily photo of something that makes me grateful. It could be a flower, a sunset, your husband or your dog. You just have to post your photo every day here.
I'm in, and I'll be posting here and on Facebook....it sounds like fun.
There's a website for this too..365grateful.com.
I'm feeling sort of oblivious to Christmas. While others look forward to gift giving and decorating the tree, or lighting the menorah, I'm really not thinking of any of that. It doesn't matter.
This morning I had to do something I've never done before (and hope to never do again). I had scheduled an appointment to meet with the local funeral director up the road.
I don't know many people who actually write about their personal experiences in this regard, and I hope you don't think it unseemly, but just as my mother is an artist through and through, so I am a writer in every way, and somehow I feel compelled to record my thoughts and feelings along the way.
I think I was actually traumatized by having to go to a wake at a fairly early age when the pastor of our church died. Ever since, funeral homes give me the heebbeejeebees, but perhaps you don't like them either. Who would, I guess.
It actually wasn't as bad as I thought. I broke the ice with a little small talk remarking on him being 3rd generation of his family to be in this business. He was nice enough and anyway, I was surprisingly calm. If you're curious, the total bill is $5340. This includes cremation and an urn (no casket, no embalming), a service by pastor, burial, use of their facilities for the wake, prayer cards and pick up at the nursing home. The only things it doesn't include is the cost of the obituary in 1 of the 3 papers I want to put it in and some flowers for the wake. I will also be able to bring 6 of my mother's pieces of art for the wake. (He has 6 easels.)
I thought this was on the high side, but he is very nearby and his proximity also to the cemetery and myself would just make it convenient. I don't feel like shopping around for this. The price would have been much, much higher if I had gone with a traditional burial as the caskets cost from about $800 up to $10,000. Not sure why it matters since it's going in the ground pretty quickly, and things that people say to each other or see (like mom's art) i think are more important.
I honestly don't know if ANYONE will come to the wake. It's conceivable it could just be me. That would make me feel pretty miserable on an already miserable day. Although I think my dad would come, to support me. Not sure about my sister since she made the one visit to see my mother and i never did hear from her before or afterwards, so that may be all she can handle. Of my mother's 2 cousins in NJ, 1 is older than her and I'm guessing wouldn't want to make the trip, and the other did recently lose her husband and works f/t, so I don't know if she'd able to come either.
I have already put a whole bunch of names, culled from my mother's yahoo email account, of friends, fellow artists and patrons of the arts with whom she regularly communicated. Perhaps some of those would come, but again, I have no idea. Since I personally am fearful of wakes, there could be others like me too. Perhaps after putting this one together I will have less fear and be better able to comfort others when they need it.
I've already written a rather long obituary and emailed it to the funeral director. You may feel this is sort of morbid, but I know I will not be in good shape when my mother passes, and the more things I can do now, while I have a relatively clear head, the easier it will be. Because no one else is going to do it.
Instead of putting a religious verse on the back of the so-called prayer cards, I think I may have found something my mother wrote about her art, as part of her Artist's Statement displayed with her art at exhibits. Yes, her life was all about her art, and I mean to share its beauty with whoever may show up.
The funeral director said he could probably do what I wanted, which was to hold the private family service and burial immediately after the wake. This way, I can get through it all in a single day. I'm not sure I could handle it otherwise. If there's really bad snowfall, though, it's possible burial would be delayed, even until spring.
Yesterday I left work early to meet the hospice team at Masonicare. I met the social worker, her boss and the actual caregiver/nurse. The nurse will start out only seeing her 1 or 2 days a week and then increase down the road. But they can do massages, art therapy, pet therapy and just generally give her more time and attention, which I think would really help.
Today I went again and brought a small dish of chopped up strawberries, blueberries and yogurt, and today's musical selection was Vivaldi's 4 Seasons. I also brought one of my mother's 3 ring notebooks filled with newspaper clippings about her work, which we went through togethr. I brought another Christmas present, too, and a Christmas card from her cousin.
Because she is now under hospice care, they stopped the physical therapy, which I'm guessing didn't really go anywhere anyway. But I AM worried about bedsores becus she's constantly sitting in that chair. I think next time I will bring ice cream, a favorite of hers. My mother struggled to speak today, but I managed to understand some of it. I also read to her from one of her Science of Mind booklets, an issue in which she wrote a long time ago about how Science of Mind was a transformational event in her life. I have learned so much in the past 6 months about who my mother was as a person, apart from who I thought she was as a parent.
Both my cats adore the new cat bed I bought them. Not that they don't already have access to every soft surface in the house, but both boys love the cavernous-like qualities, and of course, the color perfectly matches Luther's fur.
I picked out a tombstone today. I had no idea how many decisions there are to be made concerning this. There were 3 basic shapes: the large, tall upright, which is the most expensive, the "slant-sided" version, which is still quite nice, but smaller and without the height, so it sits lower to the ground, and the kind that lies flat, face up in the ground, the cheapest at about $1,000.
I know the man would have loved it if I agreed to an etching or carving of one of my mother's art pieces (yes, they digitize it and shrink it to scale, the whole 9 yards) but in the end I decided to just go with the verse I'd written for her, "An artist who captured the beauty in life." It pretty much describes her.
I went for the upright style with the base, but somewhat smaller than full size. Still (gulp) this is costing over $2,000. That's with the light gray granite, quarried right here in New England (Barre, VT). I like the light gray; the other colors, like black or rose, are more expensive.
There is some uncertainty, depending on when my mother passed, about when her remains could be buried, due to this being winter. If there is heavy snowfall, the cemetery superintendent said they shut down; the monument place had said the quarry in Vermont shuts down for winter as well, but he had enough granite in stock that he could work around that. I hope that doesn't happen because I don't think I can begin to rest easy until I know this is behind me. Otherwise, I would have to wait until March or April for burial, which seems like a very long time.
He will email me some images of how it will look and then once I approve it they can get to work on it. It takes about 4 or 5 weeks and all will be done, save for the end date. They can even put the stone in place, without the concrete, below-ground footing, which may not be able to be done now either, again due to the cold weather. But they could put the stone there and then in spring just temporarily move it when they put the footing in, then re-position the stone.
I told the monument guy about how the first place I was shown at the cemetery was surrounded by at least 4 of the children who died in the 12/14 shootings here. And that I ultimately chose that spot because I thought my mother would like to be surrounded by children. The monument guy said I'd be surprised how many other people did the same thing.
He even talked to me about did my mother have a favorite font/typeface I'd like to use, and whether I wanted all caps or upper/lower case, and did I want the rough hewn border around the stone or polished granite look. I was just really surprised there were so many choices to be made.
After that I saw my mother, and fed her lunch. She is eating and drinking, but not anywheres near a full sized portion. I brought her over some fresh berries, dark chocolate and a clementine, and she seemed to enjoy all of it but after a certain point she would eat no more and clenched her teeth.
I also decided to start giving her her Christmas presents now; I would feel awful if something happened between now and Christmas and they were sitting her all wrapped. So I gave her one and got excited to see it.
When I came home, i got a message from another of my mother's cousins and I called her back and we had a good long talk. She's a year older than my mother but mentally she is very clear, though she had 2 hip replacements. She talked a lot about her parents and her grandmother and filled in some family history for me which I find so intriguing. I have a large sepia-colored family portrait of my grandfather's side of the family, and it was the matronly looking woman and her handlebar-mustachioed husband sitting in front of the clan that I always wondered about. They were my cousin's (and mother's) grandparents. When "Mary's" first husband died in a car accident in the 1930s (?) (the man in the photo) she remarried another man who last name is the name of the founder of a CT helicopter company. I'm curious to research this family history at some time and see if there's any connection there.
Sadly, my mother's cousin's father also had Alzheimer's, although he lived to be 90.
I had other errands to do today but I just didn't feel like it. Once it gets dark, I'm done.
My sister and I haven't spoken since June. She hasn't seen my mother since March. But because I've been steadily keeping my dad (long divorced from mom) updated about my mother's deteriorating condition, including now, the fact that hospice has been called, my sister I guess decided it was time to see her.
I only know this because I got an unexpected phone call from Maplewood at work. I had already settled up with them with the bills after moving her elsewhere so I was wondering why they was calling.
She told me someone by the name of XXX had been there, wanting to see my mother. Because she hasn't called me, she didn't know that my mother hasn't lived there since September. I tell my dad everything, but perhaps he never mentioned this to my sister, I don't know.
She wanted to know where she was. As standard security procedure, they asked her for some form of ID. She got upset about that and left.
After she told me that, I called my sister, got her machine and told her that my mom has been living at Masonicare, and gave her the room number. I also briefed her on what security measures to expect.
I was working at the office yesterday. Around 3 pm, I called the 2nd floor at Masonicare to see how my mom was doing today. The nurse told me she had a visitor around noon. It was my sister. Nurse said she stayed a long time and was crying and trying to feed her.
I still haven't talked to my sister, but I feel very badly for her. It must have been a huge shock to see my mother in her current condition, although my sister made the choice to stay away these many months. In fact, withdrawing from the family is a choice she's made for many years now. Even when she showed up for major holidays and birthdays, she never shared much about her life. If you asked questions about how was so and so (her significant other), her job, her animals, whatever, she would answer briefly, like "He's fine." "They're fine." She never volunteered much at all.
Sadly, when I brightly said to my mom last night, "So XX came to see you today," she looked at me with a puzzled look on her face. She didn't remember the visit. I don't think I will do that again; much as I knew seeing her oldest daughter would make her very happy, it would also be upsetting to not remember an event someone else did. This is what they mean by remaining in the present with dementia patients.
I don't know if this will be a one-time event. I know my sister deals with unpleasant or awkward situations by avoiding them, so she may never go back. My hope and prayer is that she will return to give my mother what solace she can.
My mother was not talking much last night, and what she did say was unintelligible. As I always do, I told her I love you very much. Forever and ever. Most times she will say, I love you very much. Last night, she also told me Thank you so much. I was bending my head down to hers, and I barely heard it. It startled me. She DOES have some awareness of what is going on and it breaks my heart.
Earlier on, mom would often say, I'm so lucky to have a daughter like you. The first time I remember her saying this was in the hospital shortly after her hip surgery. She was sitting down, looking up at me, her face was positively radiant and full of joy as she said it.
Each time she said this, I felt bad...and guilty...because I always thought I could have done more. It also made me more determined than ever to stand by my mother.
And I remember the trouble spots in our relationship from years ago with great regret, regret that I did not understand my mother then the way I do now, regret that I expected my mother to be the perfect parent instead of just a person who loved me very much.
The hospice nurse i guess will be on the scene on Monday as I never heard from her on Friday. I will see my mother today with some dark chocolate, a favorite.
Although I have to work most of the next 2 weeks since I used up my vacation, I plan on working from home most of that time so I can sneak away to see my mother and spend as much time wit her as I can.
Come Fly Away With Me
Last night a nurse from the nursing home called me to ask permission to put an IV in my mother overnight to give her fluids. She hasn't been eating or drinking much and she was dehydrated. I said yes. She made it seem like it wasn't a big deal, that hopefully my mother would bounce back once she got some fluids in her.
Tonight I went over there after work. She is not doing well. As luck would have it, the doctor was there when I arrived. I'd wanted to meet her for a long time; I hadn't planned on liking her as it seemed to me these past few months that she relied a lot on meds to manage my mother's condition, and they don't ask you, they just give residents the meds. It was hard keeping track of them, the frequent changes in dosing, etc. You give up a lot of control when you put a parent in a nursing home, that's one thing I've learned.
I was prepared to have to fight them on my mother's care because I felt that doctors and nurses are trained to preserve life at any cost. I worried that overnight IVs might become a nightly ritual. My mother has a living will that says she doesn't want artificial means of hydration or nutrition. I went with her to draw up the papers, and this turned out to be about 6 months before she was diagnosed with AD. Anyway, these past 24 hours I've been wondering how or when to draw the line, and what would my mother want now, regardless of what she signed then.
I was so surprised that the doctor was not at all what I expected. She told me her own mother died of Alzheimer's and that she wouldn't put my mother through the IV thing again. She told me that due to not eating or drinking enough, my mother's sodium levels were already elevated. She said it was not too soon to call in hospice. I was kind of reeling. She's telling me my mother will probably hang on for a few more weeks but eventually slip into a coma and die.
They said she was curling up in a fetal position and refusing food. This is exactly what my grandmother had done before she died. I remember when I went to visit her I tried to feed her and she pushed my hand away with surprising strength. It was almost as if she decided it was time, and this is also what the doctor said about my mother tonight.
Tonight I told my mother I loved her very much, and she told me she loved me very much. I tell her this every time I see her. So part of her is still there, because she said it back. I sat with her a while and held her hand, trying to soothe her to stop her moaning, something she has done a lot of for months now. She's not in pain; it almost seems like anxiety to me.
The doctor said that dying of dehydration is a painless way to die but they will make sure she's comfortable regardless. Hospice nurse is expected to arrive on Friday.
The doctor didn't know my mother was an artist, so while I was in with my mother, the doctor and the nurse with her googled my mother's name online and were admiring her work. Then they popped their head in my mother's room and saw the smaller pieces I'd brought in for the walls. The doctor said she wanted to buy one of her larger pieces. My mother, who had been lying there moaning with her eyes closed, opened her eyes wide when the doctor said this. So she understands what's being said, she's just not really able to communicate or respond. It's really sad.
Coincidentally, I emailed the owner of a gift shop where I'd dropped off 15 or so smaller pieces right after Thanksgiving. I emailed her to say well, i haven't heard from you so I guess you haven't sold anything; if you want to lower the price by 10% or 15%, you can. She wrote back to say she'd just sold the most valuable piece I'd left there the night before. I was so happy. My mother would be psyched, if only she knew.
I feel so very sad. Everyone must die, I know, and I have to remind myself that my mother lived a rich, fulfilling and productive life. She is 81. There have been many times these past few months when I inexplicably feel I fiercely miss her, and can't wait to see her again at the nursing home, even though I just saw her a day ago. Before she had the Alzheimers, I was not this close to her, but I think I'm just trying to spend as much time with her as I can before she goes. I feel I have been grieving for her for many weeks now, in truth, and I know I will miss her very, very much when she's gone. I don't know how I will deal with that; the finality of death is what scares me. When she's gone, my life will be changed forever.
I can't help thinking about that one last little trip I'd wanted to take her on when she was still living at Maplewood last summer. I had gotten into the habit of doing little field trips with her; one week it was a museum in Westchester County, while another week she was thrilled with a trip to an eclectic garden nursery because she got to stroke a big fit cat lying on the counter in the gift shop. But the one trip I wanted to take her to, but didn't, was a small but exquisite Japanese garden, also in Westchester County. We had in fact been there once before but I knew she wouldn't remember it and it really was so beautiful. There were a few weekends that summer when it was just too humid and hot to go and so the summer wore on and now it is too late.
Out of the Woods IV
I am glad 2 of my male friends came with me to visit her there, along with her cousin from New Jersey and her faithful neighbors from her old condo. I am glad for the meals I shared with her there, and the walk we took around the new condos across the way, and the walk around the pond with the fountain she could see from her window. I am so very glad for the countless times I pushed her in her wheelchair, outside around the pond or, when the weather got too chilly, up and down the hallways, on the first floor where we could look at the fish tanks and the art on the walls, just to get away from the depressing 2nd floor.
Now I will have to fast forward the funeral plans, something I'd been procrastinating about and planning on putting off til after the holidays.
This also means that, unexpectedly, my sister and I will inherit a sizable sum that I assumed would be sucked up by the nursing home in a year or so. To be perfectly honest, I would rather not inherit anything than have to give my sister half the money. She emotionally mistreated my mother for years, abandoned her when she became ill and walked out on me. We haven't talked since June and she hasn't seen my mother since March, before I had to move my mother into assisted living. For that I cannot forgive her, and I will hate like hell to have to fork over her share, but do it I will, to honor my mother's wishes. I'm honestly not even sure my sister will show up for the funeral.
I want to have calling hours so that friends of my mother's can stop in if they wish. I think that would be a comfort to me. What I'm envisioning as a brief funeral and burial will be private, family only.
But I may be the only family there if my sister doesn't go and my mother's cousin from NJ doesn't go. Maybe she would; I'm not sure as my mother's cousin just lost her husband a month ago. I think my dad, long divorced from my mother, would go to support me, but if not, I would be all by myself. That's why I want my mother's friends to show up, to support me the way my own friends, here online and elsewhere, have done. I would be lost without you. A special thank you to FrugalTexan. No matter how mundane, rambling or boring my posts are, she never fails to leave a little encouraging note, just to let me know someone is reading my thoughts. Thank you, FT. Hugs to you all.