Which Disaster Will You Be Having Today, Ma’am?

It’s hard to know where to start.

When I last posted, I believe my dad was already in the nursing home, ostensibly for rehabilitation after a fall.  Medicare pays for 100 days of rehab, and then if long-term care is needed, one’s own funds have to be used until gone, and then Medicaid kicks in.  But then you are pretty broke, both the patient and the spouse, because the nursing home costs $6000 per month more or less, and that doesn’t include a lot of necessary things.  So for most normal people, it doesn’t take long to run through the savings/retirement account at that rate.

But it does include the basic care an invalided person needs, like feeding and diapering, showering, and a variety of entertainments for those who are able to take them in.

Well.  Dad’s 100 days were up, and Mom, who used to work at the very nursing home he was in, went to look at the room on the long-term care wing where he was to go.  I didn’t see the room, but apparently it was dark, tiny, and horrible, and Mom freaked out, and she was talking about it in front of Dad so HE freaked out even though he didn’t really understand what it was all about, and he started crying and in his broken language, begging to “go home to his house.”  So I freaked out too.

So Mom decided to bring him home, and I went along with that because Dad’s pleas were heartbreaking.

But.  I had tickets to Israel for the two weeks surrounding the festival of Purim, and Mom wanted to bring Dad home before I came back.  I didn’t like that idea, but when Mom gets a bee in her bonnet about something, it will happen regardless of any extenuating circumstances.

But.  I refused to cancel my trip on account of her poor judgement, so I put Noga in the boarding kennel and went off to Raleigh to spend a few days with my son before hopping a Delta flight (free with miles) to New York, and from there to Israel on Turkish Airways.

Time with my nearly-29-year-old baby boy was wonderful as always.  We never run out of things to talk about.

I arranged with my hotel to keep my car in their garage at $5 per day, cheaper even than the airport’s long-term-parking where you have to drag your luggage to a shuttle stop, then hope the shuttle appears before your flight leaves.  Then, when I returned, I would stay the night at the hotel and drive back to West Bumfuck (as my gay boyfriend in Jerusalem calls it).

My flight was at 7 am.  The night before, I called the front desk and asked them to arrange a cab for me at 5:30–the airport is a 20 minute drive, and since it was a domestic flight I only had to be there an hour before.

The desk person told me they don’t do that (calling cabs), but that there are tons of cabs hanging around at that hour because of all the guests leaving for flights.  But did I want a wake-up call?  I did.  At four am, please.  It takes me a long time to get ready in the morning.

Four am, both my phone alarm and the room telephone go off, and I levitate, thrashing for the light, the phone, whatever I could get my hands on first, sending everything on the bedside table flying: water bottle, glasses, asthma inhaler, cell phone, telephone, lamp.  Fuck.

I felt around and got hold of the lamp.  It still worked.  Then I collected the rest of my belongings, calmed down, and went for the shower.

I got down to the lobby with my bags at about twenty after five.  There was a cab waiting outside.  I rushed to the desk and asked them to reserve that one for me; but at that very moment a couple jumped in and off it went.  So I asked the clerk to please call another one, which she did.  I finished checking out and sat down to wait for the taxi.

An elderly yet fit couple came down, checked out, and sat down to wait for a cab.  Their flight was three-quarters of an hour after mine.

The cab showed up forty-five minutes late.  We all rushed out.  They had a lot of luggage; it took several tries to get it all arranged so that the back hatch would close.  By now it was well after six.  There was hardly any traffic; I entreated my driver to go faster, but he just bumped along.  It wasn’t his flight, after all.

In short, I arrived at the check-in exactly five minutes late.  Would they hold the flight?  No.

But I could go on the next flight, which got into JFK at 1:30 pm.  Great: that was exactly the time my Turkish Airways flight took off.  I called Turkish Airways.  It took a while to get someone who spoke English on the line.  Wouldn’t you think they would have English speaking customer service people in their New York office?

Anyway.

There is only one Turkish Airways flight to Istanbul (the only place T.A. flies from JFK) per day.  I could take the same flight out the following day: for an additional $444.

I considered it briefly.

Then it became clear that this pattern of obstacles was trying to tell me something.  But which thing was it?  Was it a test, to see how many obstacles I could overcome in order to merit to be in the Holy Land for Purim?  Or was it a sign that I’d better turn back, let go, let all my plans (and considerable money) slide?

I chose the latter.

So I took another cab back to my hotel (another $45 fare!), collected my car, drove the five hours back to get Miss Noga, who was of course thrilled to see me (and I her), and drove back up the mountain to beautiful West Bumfuck.  I fell into bed at 7 pm and slept until 10 the next morning.

I figured I’d better go up to the house (remember, I live in an outbuilding on the property) and see what was going on.

Mom was sitting at the table having her breakfast.  Dad was sitting at the table in his wheelchair, staring at the slices of cheese on toast, pawing at them with his nearly useless hands while Mom ate her food and mildly scolded him for playing with his food.

She had only just brought him home, it turned out.  She brought him home in her car, having forgotten that there is a county van service that would transport him safely in his wheelchair, for free.  The very same one we used last week to take him to the dentist.

I fed him his cheese, but the toast was too much for him: it stuck in his throat.  He can’t eat solid foods anymore.  It has to be mashed up or put through the blender.  And his hands have forgotten how to get his fork/spoon/hands to his mouth.  If no one feeds him, he doesn’t eat.

Then the home hospice nurse came and did an intake.  They have someone coming to the house a few times a week, and they provide a wide range of services that I am grateful for.

Mom has arranged for three hours a day of private nursing assistance.  The guy came today and got Dad out of bed, which was a good thing because Mom was unable to get him out of bed by herself.  TYS, TYS, not funny.

The bed of course was soaked in urine, since my dad is incontinent.  So he wanted to get up, naturally, but couldn’t because he is mostly immobile, and Mom is 87 although she has not so far awakened to that fact.  So they had to wait for the nursing assistant to arrive, to get Dad out of bed and showered and dressed.

I showed up there at noon, having slept till 11 am (am I stressed or something?!).  Mom had made Dad a sardine sandwich–his favorite!–that he had not had in 103 days, the time he was in the hospital and nursing home.  So Mom was very excited about the sardine sandwich.  Dad was asleep in his wheelchair, drooling on his front.

She sets this delicious sandwich down in front of him, with all sorts of expressions of anticipated delight.  He stares at it blankly.  I ask him if he wants a bite.  He nods, so I pick up the sandwich and bring it to his mouth, which remains closed.

“Do you want a bite of sardine sandwich, Dad?”

Nods.

“Then you have to open your mouth.”

He does, I slip the sandwich in, and he takes a bite.  I watch out for my fingers.  He is known to have a ferocious bite.

We manage another bite, and then his throat rebels.  I wait anxiously for him to get it swallowed.  I guess that’s the end of the sardine sandwich experiment.

But Dad reaches over, in a rare moment of coordination, and takes the top piece of bread off the sandwich: he uses his spoon to carefully butter the bread with apple sauce, then drops it on the plate.

Mom mashes up the remaining sardines and takes the bread away.  I feed Dad the sardines.  When they’re gone, he spies a bit of onion on the plate and points to it.  I feed it to him.  There are little specks of sardine here and there on his plate; he points to them, and I gather them up on the tip of the fork and put them into his mouth.

Then he has an attack of acute chest pain.  This has been happening more and more often.  In my opinion he’s having cardiac angina–when the heart muscle doesn’t get enough oxygen, it complains loudly with pain.  My mother has convinced herself it’s indigestion.  Well, whatever.  I try to convince her to give him a nitroglycerine tablet when he complains of chest pain, but she looks off into the distance, which I know means “I won’t.”  She says she will give him an antacid.

And now she’s decided that he doesn’t need his pain medication for his destroyed spine and shoulder, because “he just sleeps all day.”  I remind her that maybe sleeping all day might be better than being in agony all day.  Quality of life and all that.  Besides, he sleeps all days anyway.

She briefly brightens up at “quality of life,” being a social worker and all, but then starts complaining again that the medicine “dopes him up.”  So I don’t doubt she will withhold his pain meds.  If she does, I will speak with the hospice nurse and see what good it’ll do.

So here I am, back in my own little hornet’s nest in West Bumfuck, waiting to see what will be.  I know what will be; it’s a matter of when.

 

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31 Comments

  1. Gilbert

     /  March 12, 2014

    Bipolar usually rears it’s nasty head in adolescent years. When did you become symptomatic? How did you manage to make it all the way through med school? Sounds amazing so can you talk about your onset and time in med school and college. Bipolar impacts the person in such a universal way especially cognitive aspects. How did you make it through all those sleepless days? In some way severe BP1 can be worse then dementia since with dementia one does not know that they are ‘losing their mind”. With a severe BP1 you see your life disintegrating and you are cognizant of it and can’t really do anything to alleviate the pain and suffering.

    Reply
    • Hi GIlbert, I really relate to your comment, especially the last line. It’s so true, your life is disintegrating around your head and you have no idea what’s causing it or what to do about it. That’s what happened to me during my residency, and really continued until I became religiously observant, which gave me structure and community. That’s kind of gone by the wayside now, but I feel better now too. Even though my environment is poisonous!

      Reply
  2. oh laura, im so sorry for the whole situation with your dad. but, it is a good thing she agreed to help 3hrs/d, and that she is not (yet) screaming at him. maybe it is good to be at home (?) for the last part of his journey-maybe he knows where he is?

    sending you all the best positive and strong and supportive thoughts for you as you go thru this trying time. hang in there.

    Reply
    • Thanks, Kat. My main challenge now is to somehow manage not to hurt my skeleton when she does shit like she did just yesterday, trying to transfer him from one wheelchair to another, with him hanging in mid-air, dead-weight, and she’s got him by one arm, commanding me to take the other, and my little kid did, and now my back is already killing me. I don’t know how to tell her “no” when she’s using him as a weapon.

      Reply
  3. Laura, I seem only to have one thing to say to you these days that makes any sense at all: I love you. ❤

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  4. Still praying for you, Laura. Sounds like you are doing a remarkable job of staying in the present and listening for the important stuff.

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  5. Sending you calming thoughts. ..

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  6. teddymear

     /  March 13, 2014

    I was surprised to hear your Dad’s back home, Laura. I’m glad there are others coming in to help you with some of his care. You are in my prayers. Remember to take care of yourself too 🙂

    Reply
  7. I am so sorry that you could not go on your trip to Israel.That is a destination which I also want to visit someday -hopefully soon.
    I am starting a novel which is based in Israel. It is entitled The Wall Creeper. I would be so honored if you would view it on my blog and please let me know anything you feel led to tell me of Israel culture, landscape or Jewish customs. i don’t want to add to your stress but i also don’t want to in any way ruffle the feathers of any Jew due to my lack of knowledge. I am hoping to fly there soon. I am also hoping to complete this novel within the span of a couple of months. My blog is http://www.spotublog.com. Please if you have any spare time give it a skim through. I will keep you in my prayers as I continue to admire your strength.
    BE blessed my dear.

    Reply
    • Thank you,Gracie Lynne.

      It’s interesting that you’ve chosen to write about Israel, never having been there. You should really just drop whatever it is you’re doing and go travel in Israel. There is an amazing feeling about the place that can never be described to one who hasn’t been there; and I feel it would be very difficult to accurately write about it without having experienced that specialness, breathed the air of Eretz ha’Kodesh (The Holy Land). So go, go, go, RIGHT NOW! I can hook you up with tour guides, from whatever angle you want to explore, whether religious, cultural, historical, Biblical, archeology, science, art, mysticism, botany, ecology……..

      Reply
      • I would love to do that my dear friend but I do not have the money to do that right now. Hopefully when my book The Wall Creeper gets published I will be in a different circumstance. I am trying to find businesses which will buy advertising space on my blog but most people are not knowledgeable about the world which we write in so they are unable to justify the expense. As soon as i get some income rolling in I am off to Israel!

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  8. Im so afraid this will not end well….I just hope he doesn’t get hurt…or you!

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    • I’m afraid you’re right. This can’t end in any way but catastrophe. I wish I could be more optimistic, but even at a simmer she cannot keep him changed and dry, and his diabetic skin will suffer….at worse, a catastrophic fall…..and my 87 year old mother seems to think she can horse him around like the 20 year old aides at the home–only it took two of them to transfer him and get him toileted, etc…..so all I can do is try to minimize collateral damage. And try not to BE the collateral damage.

      Reply
  9. At 87, your mom is doing a remarkable job. In India, it is a rare sight that such aged people are all by themselves to take care. I never thought that you had a son of 29 years, I always thought you were in your mid-thirties. :-))

    Your seems to be an energetic family and young at heart. Love and peace to all of you.

    Reply
  10. I cannot begin to imagine what you are going through. My parents are in their early to mid 60’s and I am actually dreading the time when this may happen. My father would not cope and my mother would be an absolute nightmare …

    I can only hope that you get some kind of clarity …

    Reply
    • Thank you so much. Clarity is indeed the only really beneficial thing there is, at some point. Health would be good, too, for everybody.

      It’s amazing you’re already thinking about what to do with aging parents. I hope it’s easy for them and for you. In the meantime, enjoy the freedom of your life now. xoxox

      Reply
  11. God bless you and yours!
    Andrea

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  12. I’m probably going to keep reading, but may not be able to continue commenting. This is stirring up all sorts of triggers from when my father was dying (lymphoma; otherwise healthy) and my mother (Parkinson’s, diabetes, Alzheimer’s, high blood pressure) and I was the one responsible for all her care for six years. Beginning with the “let’s go to the movies and out to dinner and have some fun” stage to the “body frozen and immobile, and bedridden, and diapers, and only able to eat baby-food consistency foods, and all that mattered at that point was effective pain management and offering whatever comfort might be available”. All those different stages of watching someone as their body slowly shuts down, and all the layers of unfinished business on a psychological and emotional level, and all the physically demanding aspects of the process. Exhausting, in every possible way.
    Sleep when you can. Allow yourself to turn a blind eye when you must. Quit beating yourself over the head with the echoes of guilt. Keep working on solving the issues, one at a time, as they present themselves. Come up for air every now and then, and do something uncharacteristically selfish and enjoyable. My heart is with you, and if I could bottle up a bit of strength and Zen-like peace, I would gladly put it in an envelope and overnight it to you immediately. If not sooner. Hang in there, sister. This, too, shall pass.

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    • Thank you, thank you, thank you. You have given me a great gift. Did you have help with the physical care of your parents, or did you do it yourself? I’m not so sure I could take care of my mother at all. My brain rebels at the thought of it. I’m sorry this is so triggering for you. Thank you for continuing to read…it must be hard….

      Reply
      • I’m taking a short break from reading to allow my equilibrium to get centered again, (those triggers can sneak up on a person), but wanted to answer your question about the care of my parents. First, as we begin to get to know one another, you’ll soon figure out that I tend to talk too much, and sometimes I forget to put the filter in place. Depending on where I am in the bipolar roller coaster, there may also be times where I go completely silent, but as a doctor, I’m sure you understand that completely. Just felt it might be pertinent to put the bipolar red flag out there, because, as you know, it can be unpredictable.

        I have lots I could share about my (long and twisted) journey through healing, and how that related to where I was in the process when my parents were dying. I’ll try to keep this brief, but just in the very short time I’ve had a chance to read a few of your blog entries, I can tell that our positions with our parents is reversed, in that I ended up being much closer to my mother, and had a relatively healed relationship with her (more on that another day), but my relationship with my father was strained, at best. I will try to answer your questions without throwing out any triggers, if possible, and will try to keep those parts of the story generic.

        The short answer about my father. I was not directly involved in his physical care. Again, too much to answer in short form, but at some point in my therapy, I was urged by my therapist to directly confront my father, who had never taken responsibility for the ways in which he impacted my life. That confrontation was surprisingly successful, in that three things happened immediately: (a) he accepted responsibility out loud, and apologized for how his choices had impacted my life, (b) when directly questioned about the WHY of it all, (a question we know has no answer) he offered information that I deemed authentic and true, so I was satisfied with his answer, and (c) all of the power shifted to me during that confrontation, and I saw him as a broken old man with lots of regrets. He feared that our meeting (confrontation) was really me setting him up to pay consequences, and despite this, he showed up anyway, which did a lot to help shift all the power to my side of the court, and also helped punctuate that this manipulative etc etc person might actually be sorry. Not everyone gets the opportunity to have any sort of satisfactory resolution in these cases, and I’ve always been aware (even then) of how fortunate I was in that regard.

        Enough about that … the point was this … during the ensuing years after our confrontation, we had a distant and somewhat sterile relationship. He lived in another city (about six hours away), so I hardly ever saw him, and rarely spoke to him on the phone. He still had a tendency to fall into old patterns of using verbal tactics against me, so I tried to ensure he didn’t get too many opportunities. However, about ten years later, he and I were in contact more often, mostly because I had a brother that was getting out of prison, and it had been decided that I would help my brother move to the same city where my father lived, so my brother could get “a fresh start”. My father had recently been diagnosed with lymphoma, and it was my father’s intention that my brother would take over his business (of owning several bars). I had progressed far enough in my healing that I felt that I should be able to physically care for my father during his illness. I was wrong about that.

        Quickly … in my life, I have cared for probably a dozen different people who were terminally ill, in one way or another. I never planned it out that way, but that’s the way it all played out. It started with a close family friend, and then another, and my mother-in-law, and father-in-law, etc etc. So by the time my father received a terminal diagnosis, I had already been through the entire process several times. I thought I would be able to set everything else aside, and just step into a caretaker role, if for no other reason, than because he was a human being who needed help. But I was asking too much of myself.

        Again, to keep a long story short, when my brother got out of prison, I moved for one year to the city where my father lived, and my brother and I got a house together (near my father’s home) while my brother started trying to get his life back on track. During that year, my father’s illness got progressively worse, although he continued to live independently in a home he shared with a roommate. As he became bedridden, I initially attempted to provide for all his personal care. Within a very short time (less than two weeks), it became clear to me that I was simply not going to be able to follow through with my plan to be his primary caretaker until his death. All the progress I had made in my recovery was quickly disintegrating, and it became a matter of accepting that I had asked too much of myself.

        Although my brother was playing the “I can’t handle this” card, I gave him no other option. I had already financially supported my brother for several years, (while incarcerated and after), and I made it clear to him that he was up at bat. In other words, in effect, I called in his debt (and asked him to grow up already). I hired a hospice service to come in every day, and my brother and his girlfriend (who did much of the direct care) moved in with my father, and within a short time, (less than a month), my father passed away at home.

        During that month, I moved back to my home city, but went back multiple times to visit with my father during his last weeks. We had many long conversations. I did everything within my power to try to put his heart and mind and spirit at ease, and made sure he felt that I had authentically and truthfully forgiven him. I could add more here, but will leave that for another day (the part about me asking him for his forgiveness, too, for the many ways I had hurt him during his life). Too much information to absorb for one day.

        So, the short answer is “no”. I was not directly responsible for the physical care of my father (other than for a short period of time when he first became bedridden). My father rejected doctor and hospital intervention, and it was his wish to remain independent for as long as possible, and he wanted to die at home. He managed to live independently up until about two months before his death, and once he became more and more incapacitated, then my brother and his girlfriend, and the hospice team, became responsible for all his care. My role became one of putting his spirit at peace, rather than physically care for him.

        I suppose I should also add that for a long while, I carried a lot of guilt about not being able to physically care for my father in that way, but honestly, by the time my father was nearing death, my mother’s health was just beginning to falter, so I ended up having to shift my focus to her care, anyway. But that’s another whole story.

        Eventually I managed to let go of the guilt, and just accept that I had done my familial and daughterly duty in that I arranged for hospice care, and arranged for my brother to move in to help my dad, and to make sure that my brother didn’t wimp out at the end and call an ambulance when things got critical, because it was so important to my father that he wanted to die at home (which he did). I was not physically present when my father actually died, although I arrived at his home very shortly afterward (within hours of his death). I had planned to be present, but circumstances (or fate) prevented that from happening, so initially, I also had some guilt about that. Like I said earlier, eventually I managed to get to the place where I let go of all the guilt associated with what I did, or did not do, in relation to my father’s care, and his subsequent death. I am only human. I did the best I could under the circumstances.

        On one further note, it was also my father’s wishes that he be cremated (zero tolerance for any sort of religion) and that his ashes be spread at a particular mountain range in New Mexico (a place that held significance for him). My brother and sister and I were initially supposed to take a joint trip out there, but after a year of trying to get them to commit to making the trip, I finally just asserted that I was making the trip and a specific date, and they could either join me, or not. They didn’t, so I made the trip alone. Spreading my father’s ashes was my final act of kindness towards him. Doing that, and following through on the promise to spread his ashes, helped me immensely in closing that chapter of my life.

        Which isn’t to say that ugly triggers don’t jump up and bite me (as you know). But truthfully, I’m forever grateful that I gave myself permission to step away from his direct care, and I’m equally grateful that I made sure his wishes were followed about dying at home, and having his ashes spread in a particular spot. I did everything I could do, and got all the closure I could hope for, and even though it didn’t mend all the broken places, it all helped me move forward. Some days, one step at a time.

        If caring for your mother is not something you can see yourself doing, then, please, don’t do it. Don’t sign up for something you know will put your own health and well-being at risk. I don’t know if you have siblings / family friends you can lean on. I had siblings, but no one that was willing to step up, so I ended up sort of forcing it on my brother. I didn’t feel guilty about that one … well, a little bit, but not much. Another day and another time, I’ll explain that one. My brother was, in my opinion, sorely in need of an introduction to what adulthood REALLY looks like. When you are caring for a parent, there’s no where to hide.

        I started with my father, because his story was the easier one to tell. Tomorrow I’ll try to come back and answer the question as to how it related to my mother. In her case, I was solely responsible for all her care for more than six years. In fact, it sounds very much like your story about your father is mirroring (in some ways) the story of how I cared for my mother. More on that tomorrow.

        Today, all I can say is to keep tackling each individual issue one at a time. Pull in all available resources, and if you don’t already have a hospice service on board, get one involved immediately. They can really help you navigate many of the different aspects of your father’s care. If you don’t know how to connect to a hospice service, you can try speaking with the Social Case Manager at the rehab facility / nursing home where your father was recently discharged from. They can help you get it set up.

        Also, don’t forget this important point. In this situation, you are not a doctor. You are a daughter. Take care of yourself first, because if you disintegrate, then it will be really difficult to pick up the pieces again. In this situation, you are navigating new territory, so ask for help (even though we’re not so good at doing that) from people who have traveled this path before you. Reach out in every direction. And don’t force yourself to do more than you can tolerate. And, seriously, punctuate all the responsible behaviors with bursts of ridiculousness, where you over-indulge in any healthy way possible, and where you are allowed, even if only for a short time, to forget what is happening in your life.

        Not sure Boiling Bunnies is exactly what I’d recommend, but hey, if that’s what works, boil the bunnies. For me, it was jigsaw puzzles while listening to crashing hard rock (Pink Floyd, Jethro Tull, Mike Oldfield, Queen) and lots of ice cream. And sometimes, short day trips in any direction but home. Whatever it takes.

        More tomorrow.

        Reply
      • I’m aware this is excessive, but feel obligated to point out the Bunny Boiling reference was meant to be a bad joke. What I should have said, maybe, was that if watching horrendous movies helps, then by all means, watch the horrendous movies.

        Not to be confused with the subject matter of whether or not bipolars are bunny boilers. Just for clarification. But I’m pretty sure you knew that already … that I was throwing that in there just to tickle your funny bone.

        Reply
  13. p.s. I also meant to say (the other day and today) that I’m sorry about your trip to Israel, and that I’m hoping you’re allowing yourself to grieve for that bit of respite that was so close to your grasp, and then slipped through your fingers. When I was deep in the doo while caring for my mother, I made a point to plan for a trip to my favorite destination (Alamogordo), and sometimes would spend time online looking up places to see in the area, or trying to discover new natural spaces I hadn’t explored yet, etc. In other words, I visited the place in a virtual sense, while stuck in a black hole of Bumfuck land. I swear, all that planning that was happening in my head was sometimes the only thing between me and total anarchy.

    Don’t give up on the dream…just accept the delay, feel the pain and sorrow, and begin planning for another trip. It will happen for you, and when it does, you will be free of this chapter of your life, so you will be better able to immerse yourself in the experience.

    p.s. (again) You would think from listening to me that I think I have the answers, but I don’t. I was just a lost soul stumbling around the in the dark, so all I can do is relate what has worked for me. You already know where your strengths and sore spots are, so everything you do has to be done in harmony with that knowledge.

    See? I did it again. Acted like I know something, when I really don’t know a damn thing. But I do try to help if I think I have something to add to the conversation. That’s all I can do. Speak my truth, and hope it might help.

    You know you can do this. It isn’t a question of whether you can. It’s a question of how. You’re going to feel like it’s all too much, and it is. But you’re also going to have moments of peaceful respite, sprinkled in amongst the other. Hold on to them. Savor them. Feel free to step away and catch your breath. After all, if you start turning blue, then what? Save YOU, first. Just like when riding in an airplane. Always put the oxygen mask on your own face first, so that you can (a) survive, and (b) maybe be of assistance to others. In that order.

    See? I did it again. Apparently I can’t help myself (all puns intended). 🙂

    Reply
  14. Okay, now to the part about caring for my mother. The only real reference I’ll make as to how our relationship was healed is that when I was in my early 20’s, (many years after my father divorced her), she had gone back to the church (Catholic), met and married someone from church, and they had about twenty good years together, but when I was in my early twenties (and early in her marriage) she and I ended up making peace. She even agreed to attend therapy with me for a short time. She was always sincere and complete in her ownership of anything having to do with the physical abuse, but was never, even up to her death, able to take ownership that she had known about what my father was doing to me (and had done nothing to stop it). I factually knew this was not accurate, but at some point in my healing, I finally was able to recognize that she simply was not able to bear the burden of being that person. The one that knew, and did nothing. The one that didn’t protect her child. So I quit waiting for her to own that one, and quit waiting for that apology. I learned how not to need it. Realistically, it took me a while, but then something happened during the process that seemed to make it all not matter much anymore.

    After my mom’s husband passed away, she suffered a brain injury. She was out walking her dog one day, and the next thing anyone knew was that she was lying unconscious in the street. It was presumed she had a stroke, but no one was ever definitive about that being the case. But the end result was that she went from living independently, to being completely dependent, and it all happened instantly. The accident had happened while she was visiting my sister in Florida, so it turned out that my sister had to arrange for her to get discharged to a rehab facility, and for a long while, my mother reverted back to an almost child-like state. It took about two years for her memory and cognitive functions to return, and for her physical body to remember how to walk and talk and feed herself and dress herself, etc. When she finally started becoming more of her old self, she badly wanted to return to Texas (her home). She had ended up stuck in Florida by circumstance, because that’s where she had her accident. It didn’t help that my sister was her only family there, especially considering that they had never really gotten along. My sister resented being stuck with my mom, and my mom was unhappy being stuck in Florida with my sister.

    By then, my mom and I had been repairing our relationship for many years, and had become much closer. As soon as she was physically able to travel, we brought her back to Texas. To make a long story short, I was a single woman working an 80+ hour a week job, and even though I would have been okay with her moving in with me if she had been able to live independently and provide for her own care, I could not afford to provide for her 24 hour care, or even for her care during the hours I was at work. I simply did not have the available resources. After many discussions with my mom, she made the decision that in order to get back to Texas, she would be willing to voluntarily move in to an assisted living home.

    It’s hard for me to think back that far. Even though I voluntarily signed up for the “I’ll take care of you until your death” part of the equation, and had a fairly good idea of what that process looked like (having cared for several others in that position), I had no idea that with my mom, it would end up being a long six year process. The last two years were fairly horrific, but I’m getting ahead of myself.

    In the beginning, she moved in to an assisted living facility that I had carefully chosen for her based on (a) it being very close to my home, (b) it was small and only housed less than a hundred people, and (c) I made a deal with them that I would provide a small monthly donation “under the table” in order to ensure that she maintained a private room, and (d) the facility was located in a semi-secluded park-like atmosphere, with plenty of beautiful nature surrounding the grounds. It was very homey, and quite comfortable.

    In the beginning, she was private pay, and as you well know by now, we blew through all her savings in record time. It actually took about two years, if my memory serves me correctly. After that, I went through all the rigmarole and red tape of getting her qualified for Medicaid. Horror story. But when this began for her, it was all kind of perfect. She loved the facility, she became an unofficial assistant to the Activities Director and often ran the Bingo and other games, and she was still physically capable of doing just about everything, although she did use a walker for stability. But she was dressing herself, feeding and showering herself, and had free reign of the entire place, and more or less appointed herself as a volunteer visiting committee. The nurses and doctors loved her, the residents loved her, and she was very happy there. At least two or three nights a week, I would come collect her and take her out to dinner, or bring her home for dinner, or I would come have breakfast with her before I went to work, and she often spent the weekends with me at home (or whenever I wasn’t working). Basically, she lived at the facility, and they monitored her meds, but otherwise, she was fairly independent, and she spent much of her time with me at home, with occasional overnights and weekends. It was something that worked for us both.

    Then, the beginning of the end rolled around. The land the facility was built on was sold out from under them (long story), and we were given just one month to find her a new facility. I had already researched multiple facilities, and after an exhaustive search, managed to get her placed at a brand new facility that was still quite close to my home (actually, between work and home). They were not actually taking new Medicaid patients, but I was persistent, and used some of my contacts from the original facility to help get her a placement. It helped tremendously that the Activities Director (who my mom considered a close friend by then) also got a job at the brand new facility. In fact, that had much to do with me choosing that facility as well. The new facility was huge (over 300 beds), but having someone there that she already knew helped her transition successfully.

    While at that facility, she began having accidents. Falling more often. And the hardest thing for her is that she had to learn how to have a stranger as a roommate. No under the table deals available at this facility. She was a Medicaid patient, and Medicaid patients had roommates. That was very hard for her, and I think it contributed to her rough transitioning to the new place. When she first moved to the new place, she did her best to acclimate and adjust, but it wasn’t long before she was pleading to “come home and live with you”.

    It was breaking my heart, because I was still working 80 hour weeks, and even with my income, could not afford to pay for someone to come in a provide care for her while I was at work. I brought her home as much as possible, but she grew to hate that place, and then, as her health began failing, things got progressively worse.

    She ended up in the hospital for a severe urinary tract infection (which should never have happened), and when she was being discharged from the hospital, not surprisingly, there was no longer a bed available for her at the new facility. So I scrambled to find her placement elsewhere. They wanted to discharge her to a poorly-run and pretty disgraceful looking sort of place, but after much negotiation and begging with the hospital discharge social worker, I finally managed to get her placed at a different facility. This one was also fairly close to my home, was relatively small, and had a lovely outdoor area. Obviously, being able to spend time outdoors had always been important to my mom.

    So within about three and a half years, she was now on Medicaid versus private pay, and she was being moved to the third facility. To make a long and very sad story short, this place was awful. Terrible. She suffered many falls while there, was often left alone and unattended on the toilet, and her meds were not given properly, amongst many other things. It was just terrible. Her body was also beginning to break down, and she ended up wheelchair bound and could no longer use a walker, and could no longer dress herself, or get up out of bed or use the toilet by herself, and could not feed herself. I would visit the facility at odd hours of the day, changing up my schedule all the time, and more often than not, I would find her strapped into her wheelchair and parked either at the nurse’s station, or alone in her room, or in the day room. Confused, in wet diapers, and hungry.

    I started coming unglued. I couldn’t afford to discharge her and take her home, because I sure as hell couldn’t afford to pay someone to stay with her while I worked. I couldn’t afford to quit my job to take care of her. But I couldn’t leave her there. It was a no-win situation.

    Then she got a bad infection and ended up in the hospital again. Which ended up being a blessing in disguise, because it got her out of that facility. Again, to make a long story short, I probably should have sued them for negligence, because I had been trying to tell them for several days that she was running a fever and wasn’t acting like herself, and as it turns out, I was right. She got so sick with the infection that it triggered something (not even sure I remember how they explained it), but if I’m remembering correctly, something about her Parkinson’s being triggered or exacerbated … whatever the case, when she came out of the hospital, her body was contorted and frozen, and her mental capacity had shrunk down to nearly nothing. She had already been exhibiting symptoms of Alzheimer’s, but after that hospitalization, she had fewer and fewer episodes of lucidity.

    When she discharged from the hospital, she went to yet another facility (her fourth). This one was also brand new, and because she also had MRSA, she was isolated and by proxy had a private room, although by then she was mostly unaware of what was going on around her. She transitioned from spending part of the day in the wheelchair, to being bed bound. She quit being able to speak for herself. It was at that point, as this was happening, that I simply couldn’t take it anymore, and I arranged with the Social Director to have her transitioned to hospice care and made arrangements to bring her home.

    I was simultaneously laid off from my job (largely because I had spent too much time away from work caring for my mother, but also because the business was going through some very hard times), so I lost my income and had to go on unemployment. I was terrified. I was also already experiencing a multitude of physical limitations because I had had osteoarthritis for years, and even though my mother was not aware of it at the time, I had also been recently diagnosed with ovarian cancer. I had no idea how I was going to be able to provide for her care, have surgery and try to recover from ovarian cancer, find a new job, and not go stark raving mad in the process.

    So I did the one thing I said I would never do. I went to my sister. The one in Florida, who didn’t like my mother. But she had money, and I didn’t. I asked her to provide the funds so that I could hire a caregiver for at least eight hours a day (and I would handle the other hours). Actually, my sister had come into town when my mother was hospitalized (because the doctors all thought she was going to die, but then she didn’t), and when my sister saw how stressed out I was about everything, she volunteered to help financially. To this day, I’m still not sure if she offered, or I asked, but either way, she agreed to help me financially to care for my mother. She said she did it for me, not for my mother, but I didn’t care. I just knew I needed help, so I accepted her help.

    Once my mom was home, I ended up caring for her most of the time. I did have a caregiver that came in for six hours a day, and sometimes I was able to work it out so that she would come in four hours in the morning, and four hours in the afternoon. I’m leaving out a few chapters, but basically, I handled the bulk of her care, but also had some help because my sister was providing the funding to pay for someone out of pocket. And hospice was involved from the very beginning, although at first, they only visited a few times a week, and they would send an aide to help with bathing (if needed), but I was responsible for the meds, feeding her, and changing diapers and keeping her bed clean, etc. By then, she couldn’t eat regular food, and everything had to be mashed up or blended, so it really became about keeping her hydrated and medicated so that she was comfortable.

    I’m sorry that you’re having to fight a battle about your dad receiving pain meds. That has to be very difficult, and I only wish there was some way you could over-rule your mother completely, and insist on a regular schedule, or remove your mother from that part of the equation. On my end, I had promised my mom, early in the process, that I would do everything I could to keep her comfortable and not in pain, if it ever came to that, and fortunately, once she was under my roof, I was able to make good on that promise.

    I’m leaving out a big part of the story, but that’s for another day. The other sister, who despised my mother, was living with me at the time, (because she had been unexpectedly widowed and was broke) and she refused to allow me to move our mother into my home because she said it would traumatize her to be that close to my mother every day. Obviously, at some point, I decided to bring my mother home anyway. Another story for another day.

    As far as my mother’s care goes, I was fine with the medications and feeding schedule and bathing and the changing of the diapers, partially because I had already done that with others, and partially because it was just part of the landscape. But physically, it was very hard for me to lift my mother to a sitting position, or transition her to a wheelchair (so she could spend a bit of time outdoors), or to move her while changing diapers or changing the sheets on her bed. All of the physical part of the process nearly broke me. With you back issues, I don’t see how you will be able to do that, and it would seem that you’ll have no other choice but to try to enlist the help of others (either through hospice or elsewhere) for those parts of the equation. I had bad knees and ankles and it was especially bad in my hands. And my mother was not a tiny person, so it was very difficult. Painfully so.

    One other resource you might look at is to ask to speak with the hospice Volunteer Coordinator (they will usually arrange to either meet you at your home, or you can meet them in their office). I have done a lot of volunteer work (after my mom’s death) with various hospice services, and they almost always have quite a few student volunteers that are required to log a certain number of hours towards their degree, and often it can be arranged that these volunteers can be scheduled around the clock, or scheduled so that they have a volunteer coming in every four hours, even if only for an hour at a time. This might help solve the issue of changing diapers and changing your father’s position to avoid skin ulceration. With my mother, I was not employed at the time, and was more or less physically able to do most of it myself, and I had the help of the caregiver we had hired that came in for about six hours a day, so I usually arranged bath time and sheet changing time for when I had assistance (and just did it myself on the weekends). But I do remember the hospice Coordinator making the offer of having a volunteer come in to help, if needed.

    Your situation is made more difficult because your mother is trying to control the situation, and at her age, she shouldn’t even be attempting to provide for most of the aspects of your father’s care. I’m sorry it is so complicated for you, but I have to believe that if you arrange a private meeting with the hospice Coordinator, that they might have suggestions as to how you might get around your mother on some of these issues. Possibly. It’s worth a try.

    hang in there, and I meant to say earlier that after re-reading your blog entry, I do realize that you already have hospice involved … get them more involved, and explain your issues (you own physical limitations, your mother’s control issues). Tell them all your concerns, and see if they can help you solve some of those issues. They are there to help.

    Just keep hanging in there.

    Reply

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