The Fish Pond

Getting By With a Little Help from My Friends (and Family) OR Gratitude

This is an amazingly stressful time for me right now.  Nemo is back to not sleeping through the night again.  Sunny has entered the Age of Destruction and no one can keep up with her efforts to completely dismantle the house.  Little Man is entering kindergarten in the fall and I have to do a mountain of paperwork for the Socialist Bureaocracy of Montgomery County and then take him to school for orientation on Friday.  Trout has been great at picking up a lot of my slack but she needs time with her mom.  I end up spending so much time up with my grandfather or on the phone dealing with that situation that I don't have enough time for them, BigDaddyFish, or me.

Enter friends and family.

Like my in-laws.  Who are quirky and eccentric and unable to do too much but what little they do goes a long way to making my life easier.  They came and watched the kids last weekend and BDF and I got to go out to dinner by ourselves.  My FIL comes on the nights Trout has school of religion and takes her, waits in the parking lot during her class, and brings her home, thus making it so I don't have to shlep all three other kids into the small lobby of the school where SOR is held along with about 200 students plus their parents all at the same time because for some unknown reason we are no longer allowed to pickup outside the classroom like we did last year (this makes it sound so tame but really, this is a weekly disaster).

Like one of the mothers at Little Man's preschool, who takes turns with me watching the little ones in the parking lot while one of us runs in to pick up the bigger kids.

And Uncle Orca, our part-time Manny.  Yup.  You read that right.  Manny.

We've known Uncle Orca forever, it seems.  In fact, Uncle Orca introduced BigDaddyFish and me.  In fact, I dated Uncle Orca first.  Nope, it never gets awkward.  Really.  Much.

Uncle Orca is a professional musician by trade.  He plays a mean trombone, and he sings great, too, but doesn't like to admit it.  Since most work of professional musicians is at night, that makes him available to babysit during the day, if you catch him reasonably ahead of time to make sure he sleeps at night and doesn't keep vampire hours.  If you click the link and check out his blog and aren't a professional musician, then only about a half of what he says on his blog will make sense.  But that's his life.

Anyway, he is a great friend, and a great caregiver to my kids.  I've called on him countless times for various emergencies and he is usually able to come to the rescue.  Emergencies as big as trips to the hospital for various family members or as small as I am losing it and need a shower and need someone to watch the kids to make sure they don't burn down the house or kill each other while I do it.  He watches the kids while BDF and I go on dates.  He moved in here for the weekend for the only trip that BDF and I have taken alone since we've had kids and lived to tell about it.  The kids love him and he loves them.  He is great with them and the kids get the chance to learn that a man can be just as nurturing and caring as a woman, even if he isn't a family member.  I am very grateful that he is in our lives.  This situation with my grandfather is so trying, but it is a blessing that Uncle Orca is able to come be with the kids so I can take care of my grandfather.

Uncle Orca is also a composer and arranger, and he has a CD out, which you can get here.  I think its genre is called something like ambient electronica, but I like to call it bathtub music, as in, this is what you listen to in the bathtub when you are trying to relax and escape it all.  If you are at all musically inclined and you like jazz, it's a lot like Keith Jarrett, only minus the jazz slant and the whole saxophone thing.  The little snippets you can hear on the cafepress site do not do it justice.

Help me pay him back for all the short notice babysitting.  Go, listen, buy his CD, and spread the word.  Also!  I am giving away a free copy of the CD, so if you want one, leave me a comment and I'll pick a winner at random, say on friday.

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This past weekend my grandfather took a turn for the worse.  His oxygen levels dropped again, so now he has to be on oxygen all the time, and he was in enough pain that he finally accepted the morphine he's allowed to have.  This is a huge thing for him because he has always maintained that he doesn't need pain medicine.  He is a whole lot more confused and aggravated with the whole situation.  He doesn't really understand where he is a lot of the time, and this weekend, a couple of times he didn't know who I was.  Today he told me he was going home today, and I asked him where he thought he was, and he said the hospital.  He's not at the hospital, he's in the nursing home portion of his retirement community.  He's probably not ever going home.

I spent a huge chunk of time up there yesterday with him, just talking to him and helping him and trying to show him that we love him and aren't casting him aside.  He kept getting up out of bed and when I asked him what he needed or where he was going he'd say "I don't know, I just don't know."  He'd move to the chair for a while, then get right back in bed and lay down again.  I went with him down to the dining room for dinner; he ate about 5 bites of food and took one sip of milk.  That's all.  They are making him drink a supplement with his medicine because he isn't eating much.  I am uncertain how that fits in with his wishes to not prolong his life beyond its natural course.  I don't know whether or not to fight them on it.

There are a couple of bright spots.  He enjoys seeing Nemo even if he can't remember his name or even hold him much because Nemo weighs too much for my grandfather.  In fact, many of the residents that live there get a kick out of Nemo - it takes me forever to walk anywhere in that place because so many people stop me to exclaim over him and I don't have the heart not to stop and talk to them.  I rarely see other visitors there.  My grandfather has a funny neighbor who is the epitome of the Grumpy Old Man.  The first night I went up to see my grandfather there I was walking down the hall with Nemo in the stroller and this man saw me and says "What kinda of damn junk do you got?"  Another time he was being pushed down the hall by a family member (I think) and I was walking back from the nurses station and he saw me and groused "Whatre you smiling about?"  I shared a look with his caregiver and answered his question, but he continued to grump.  Some people would be put off by him, I think, because he means it, he's grumpy, but I just find him amusing.

I came back home exhaused and emotionally fried.  I called home to ask if they wanted me to pick up carryout for dinner, and while I was on the phone BDF told me that he needed my patience when I got home.  I explained that I was just stretched so thin if plucked I would snap, and he said he understood that and it was a complicated situation but he really needed my help so we could get to bed on time (he had a meeting this morning and had to get up early).  I walked in the door to a Completely.  Clean.  Living room. and all the kids sitting on the couch or in chairs and grinning like cats.

Our life is in the living room (or family room, same thing - we only have the one).  The one TV we own and all the DVDs.  All the kids' toys.  We usually eat in that room.  It usually looks like our house has been ransacked and a pantry emptied into that room.  It is next to impossible to stay on top of the mess when there is an infant in the house - I've been fighting a losing battle with it ever since I've had more than one kid, and it's become worse with each kid we've added.  He marshalled the kids and spent FIVE HOURS taking the room apart and cleaning it.  I asked where all the toys were and they said "We put them away, mommy."   I cried.

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My friend J's mother is in a coma from which she will not return, otherwise known as a persistent vegetative state (a la Terry Schiavo).  She did have a living will.  Today she was transferred to palliative care (hospice) so that her wishes can be carried out.  Please pray for peace and strength for their family.

The Dining Room

Yesterday I went to visit my grandfather in the nursing home where he will be for the foreseeable future.  The first thing that assaulted my senses was the smell.  That institutional sick, urine, sweat, shit smell.  Lucky for me, I arrived just at lunch time, so that smell was mixed with the smell of institution food: tuna casserole, carrots, peas, instant mashed potatoes and congealed gelatinous gravy.  Somehow I managed to make it through the 20 minutes I sat with him in the dining room without adding the stench of vomit to the mix.

My grandfather's room is in the section of the nursing home housing those with dementia in various forms, from those with some mild confusion, where my grandfather is, to a full-on lockdown Alzheimers ward.  They are currently doing construction to separate the two wards, but for now, they are two wings of the same area, with a common lobby/dining room in the middle.  They bring the residents together for their meals and some forms of recreation.

There was a woman sitting in the common dining room who had some form of brain injury or defect.   She couldn't move much that I could see; they were using some sort of restraint system to prop her up, and she wore a bib and someone finished feeding her not long after I arrived.  She also had a verbal tic.  When I arrived she kept saying "Who will help me?  Who will help me?  Who will help me?" over and over and over, with almost no breath in between, like the repeating scratch on a record.  After a while she changed to "Will somebody feed me?  Will somebody feed me?  Will somebody feed me?" and then to "Do you know me?  Do you know me?  Do you know me?"  Every so often the aide who had been feeding her would lean over and whisper something softly, and she would stop muttering for a minute or two, and then start up again.  My grandfather noted that she was "pitiful," and mused that he hoped he never got like that.

Eventually she grew louder, finally switching to "Do you love me?  Do you love me?  Do you love me?"  A couple of the other residents clearly grew tired of her utterances, and threw out comments to her, like "With a bushel and a peck and a hug around the neck" and other witty but long responses, to no avail.  On and on she kept going, "Do you love me?  Do you love me?  Do you love me?"

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I met with the admissions director of the nursing home, and we went over the paperwork to get him officially signed over and to make sure that the family was advised of all of their policies and our rights.  It took forever to work though the paperwork, such that at one point I remarked that it was worse than buying a house.  The director smiled and said "At some point or other everyone says that."  It was crazy.

One of the things that gave me pause as I was reading and signing was a form that said something to the effect of if the doctor decided that the patient needed restraints, the patient was given a choice of whether or not he/she wanted restraints used, and if you checked the negative, you also had to note that restraints may be necessary to protect the safety of the resident and others.  I checked that my grandfather would not want to be restrained, and kind of wondered if anyone ever checks that they would.  I know I can't think of any circumstances that I would want to be restrained.

Yesterday some of the staff moved a bunch of things over for him from his cottage; his TV, a phone, his cell phone, some clothing, a few pictures of my grandmother and him, and of my side of the family taken at my own wedding.  He was a lot more comfortable, and therefore more agreeable.  He was having a good day; he only needed reminding what Nemo's name is three times.  He did frighten me a bit, though.  We had to fill out a form (must have done 50 forms, it seems) that checked off the foods that he absolutely would not eat.  As I was reading through the list, he would be in the middle of an answer, a word, and would just drop off to sleep, and was difficult for me to rouse.  I would have let him sleep and come back, but a visitor came in to see him, and that gave him whatever it was he needed to stay awake so we could complete the form.  He did get a chance to hold Nemo, so that was good - it makes him happy to see and play with the baby.

When my grandmother passed away last January, my grandfather did up a new will, power of attorney, and medical advance directive.   What he didn't do was give anyone any copies of it.  The community had copies of the ones that named my grandmother as power of attorney and medical advance directive.  This meant that they were reluctant to discuss his case with us.  It also meant that his DNR, or do-not-resusitate order, was not on file, either.  If he is transported to the hospital and happened to arrest in the ambulance, then they are legally forced to resusitate, which isn't what my grandfather wants.  Now that they had his proper advance directive, they had the doctor fill out a DNR that will travel with him wherever he goes, so his wishes will be honored.

We had been having trouble with my grandfather's oncologist.  He recently put my grandfather through a round of radiation, and he continues to go through chemotherapy.  Since the community where my grandfather lives didn't have his medical advanced directive, I wonder if the oncologist doesn't, either.  To this point he has refused to give us a hospice order.  What my grandfather wants most of all is just to be allowed to go home and live the rest of his life in peace and comfort and be allowed to pass with dignity.  It is spelled out in his advance directive, and we in the family have known his wishes for at least two decades.  He does not want life prolonging measures.  I will be attending a meeting with my grandfather and the oncologist monday morning, armed with copies of the advance directive and power of attorney, and I will be demanding that the oncologist tell us his treatment plan and what he hopes to achieve with the continued chemo.  I am of british/scottish descent and I can be a real bitch bulldog when I need to be, and I am willing to whatever it takes to make sure my grandfather's wishes are honored.  That's part of the reason my name is on the papers.

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We didn't sit at the table very long; my grandfather doesn't have much of an appetite, and he only ate a small amount of lemon mirenge pie and drank his milk.  A few of the residents smiled at Nemo and asked a few questions about him; I hardly ever see any other children and babies there, and I think that's unfortunate because for one thing it gives the residents such joy to see and interact with the young, and for another, I think the children benefit from it for a variety of reasons, not the least of which is that it helps foster respect for the elderly.  The woman with the verbal tic continued her refrain of "Do you love me?  Do you love me?  Do you love me?" getting louder and louder.  Finally, one of the other residents in the dining hall yelled out at the top of his lungs "Yes!  I DO love you!  Very much!"

And the woman answered quietly "I love you, too," and then fell silent.