Author: youbetchcanmakethis

Check out the old photos

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 You really need to check out the new photos that I just added. I brought home some of the photo albums I found in my mother’s house (there are still many more pictures there and old films as well) – but I went through a few of the albums and took out a variety of photos I thought were interesting.
 
Check out my mom – she was quite a looker. I ‘ve included some pictures of her wedding, an old picture of me and my brother on a horse, my mom’s family picture that I remember seeing every day when I went down to my grandmother’s apartment, and even some pictures of moi – my high school graduation, when I was singing in a band, and at my brother’s wedding (air brushing does wonders).
 
I hope you enjoy looking at these pictures as I enjoyed scanning them. It is so great to have the technology that we have today to be able to archive these wonderful photos. Enjoy.
 

What a week!

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It has really been quite a week – non-stop. I got a lot done, but there is so much more to do, and it just seems like it never ends. And on top of everything, my car started making strange noises yesterday – I think it is related to the brakes. I will have to get it in, but it is not like I can just use Nick’s car while it is getting repaired. Sometimes I wonder if it will ever let up.
 
I was amazed at how hard it was to get rid of my mother’s furniture. Most places have strict requirements as to what they will take. For example, I called Habitat for Humanity. They will not take any furniture that is older than 5 years old. One other place said they would not take any white furniture (my mom does not have any) or any glass furniture (my mom has quite a bit of glass in her end tables and coffee tables). A lot of places do not pick up.
 
I contacted someone who is a relative of the person who owns my mother’s building. They operated a flea market in Longmont. He came by, looked at what was there and said he would call me back the next day. He left a message late in the day the next day saying he would take a pass. I guess I should have not just felt that he would take it and continue to pursue other avenues, but I waited and lost all of that time. I really felt that he probably knew at the time that he would not take the stuff. Why he waited a day and a half before calling me, I’m not sure, but I was a little disappointed in him.
 
I got a lead on a place that provides furniture for people just starting over after a family crisis such as divorce or spousal abuse. They made an appointment to pick up, but they said they had the right to refuse any piece once they got there. That was not very affirming to me, as then I would be scrambling to figure out how I could get the rest of the stuff out of there.
 
Finally I found, in the Yellow Pages of all places, an estate management person who also operates a consignment store in Longmont. She came out and offered to do an estate sale by appointment throughout the month (we worked out the details with the building’s owner), and then if things were not sold by the last Saturday of the month, have a day long sale. Any furniture that was not sold, she would take and put in her store. All of the other small things, I would be responsible for.
 
I already made arrangements with the Salvation Army to pick up the small stuff the Monday after the sale. So, it seems like we have a plan. Doing this took an entire week to organize. It doesn’t sound complicated now, but by the time you call people and find out what they can and cannot do, deal with call backs because most places that you call do not connect you with a live person, and organize the logistics – well it was just crazy.
 
Don’t forget that sandwiched in that was Nick’s surgery on Tuesday, so for all intents and purposes, I had four days to do this stuff. Today and tomorrow I need to get all of the stuff out of there that I want. And today, one of my mother’s friends is taking out the stuff that she wants.
 
This has been very surreal – closing this down with my mother still alive. The reality of it all has not hit me yet. I know it will at the end of the month when I walk out of that apartment for the last time.

Closing down Mom’s apartment.

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The time this week not spent with Nick and his surgery has been spent closing down mom’s apartment. I’ve added a photo album of pictures that I took before beginning the packing process.
 
Mom really loved this place. She lived in an apartment building that was privately owned. The owners had both of their mothers living there. It was a really nice place, not at all what some of the more typical senior housing buildings looked like. As a matter of fact, if you did not know the building only rented to people 55 and over, you could never tell by looking at either from the outside or the inside. Thank God someone figured out that seniors should be treated like human beings and not old people.
 
She had a very good deal – a two bedroom apartment (that had its own laundry room as well as covered garage parking – the two selling points for my mom), on the top floor with a balcony. Everything was included in the rent, heat, air conditioning, electricity, water, and even cable. The only thing extra my mother had to pay for was her phone bill. Her rent was $1400/month and when she rented she signed a 3 year lease so the rent stayed the same the whole time.
 
The owners always did great things for the residents – twice a week coffees with sweets in the large community kitchen area, movies once a week in the mini-theatre (which has a large screen TV), field trips once a month, luncheons at different restuarants once a month, guest speakers coming in, hand massages, and even a once a month pot luck dinner where the owners provided the main course and the residents bring the side dishes.
 
This place was the perfect place for my mother. She loved being around people and she made a lot of friends very quickly. The last year or so that she lived in Florida she was becoming very isolated and really only went out of the house to go to church, play bingo once a week and meet my aunt for breakfast once a week. Nick and I tried for 2 years to get her to move to Colorado. When she finally consented, she never looked back and she really enjoyed herself. My mom has been to places here in Colorado that I have not been to. She felt safe there, she made lots of friends there, and as I began closing down the apartment I could not help but feel that it all was a little unfair. But, life isn’t fair and I am grateful that she found a place that she loved so much and that for the last 2 1/2 years she was near me.
 
Today the Longmont flea market came to look at potentially buying some of her furniture. It almost felt like dividing up the spoils, but I have to get rid of her stuff and we have to be out of there by the end of August. My mom’s attitude is pretty good about this – she knows she can’t handle her health care by herself, and she knows that she needs help just to get by on a day to day basis. This is perhaps the saddest thing I have had to do to date – because she is still alive and you almost feel like you are closing the coffin lid prematurely. But my mom is not rich and she cannot afford to pay rent on an apartment that is empty. This has to get done. It’s just plain sad.

The surgery is over

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The surgery was done today – two screws were put in Nick’s ankle. I think it was more than he anticipated. He expected to be at my mom’s house this afternoon helping me pack her apartment. Not. The doctor told him he had to severely limit his activity for four days – do nothing but lay around with his leg elevated.
 
The doctor attached him to a machine that has a soft shell boot. The boot attached to a machine that keeps the boot at 47 degrees. This is designed to limit swelling to the highest degree possible. Tomorrow I press a button on this machine and it will not only keep the area cool but will give mild compression. It’s really pretty neat. It is designed to minimize pain and quicken the healing process.
 
Nick needs to go back to the doctor in ten days to get his stiches out and check his progress. I have to say – up to this point – he is being a pretty good patient. I think the drugs help to keep the stubborness down, although the doctors and nurses really impressed upon him the importance of stay off of that leg.
 
So tomorrow, after I make sure he is set for the day – it is off to my mom’s. The Longmont flea market is stopping by to see her stuff and see if it is something they are interested in. Hope they want a lot.
 
Mom is pretty lucid although the medication change for her bladder infection does give her halucinations, but not too bad. I’m going to stop by to see her after I do my stint at her apartment tomorrow. She seems to be holding her own, although it feels like she is slipping a bit. Nothing that I can directly put my finger on – but it seems she is losing some strength. Time will let me know.

Moving and surgery…

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Things appear to be moving at a clip right now. Today we had a doctor’s appointment to do some blood work on Nick to determine if he could have surgery on his ankle tomorrow. Then it was phone calls to the insurance company to determine all of the paperwork needed to document my mother’s care so that we can begin to access her long term care benefits. Then it was off to mom’s apartment to start the process of getting things prepared so that the apartment can be vacated by the end of August.
 
At the apartment, I put aside everything that I would take, checked with my brother who only wants two things, a wall hanging and a picture of my mother, I checked with my aunt and I know what she wants, then I called my mom’s best friend and she showed me what she wanted.
 
I got some information from the woman who manages my mother’s building. She said there was a flee market in town that would come and look at the furniture, clothing, etc. and make an offer. If I accepted it, they would come and pick it up. I have an appointment with them on Wednesday morning. Then the hospice thrift shop might be interested in some things, and after that I will call the Longmont Senior Center and see if they have some ideas or resources that can help.
 
After that, both Nick and I went to visit mom for a few minutes. Then it was off to rent some crutches for him for after his surgery tomorrow. And then, finally home.
 
I took pictures of my mom’s apartment, but I left the camera there. I will go back on Wednesday (maybe tomorrow depending on Nick and his surgery) and then I will post them on this website. My mom really loved that apartment and she really enjoyed living there. It was hard to take those pictures, and I know it will be very hard when I walk out of that apartment for the last time. Right now, I really don’t have a lot of time to dwell on that, but every once in a while the thought creeps into my brain, and it is gut wrenching.
 
This morning, my mom was a little dilusionary. When I called her this morning she said "Guess what, Jan. Sister Teresita (my aunt from Chicago) came to visit me. We had such a nice talk, and then she got tired so now she is sleeping in my bed." I told her Sister Teresita was not there but she insisted that she was. Then finally she asked me if I wanted her to wake Sister Teresita up to prove it to me. I said yes and she called Sister Teresita’s name two times. Then she said, " Oh, oh, I guess she really isn’t here, is she?" I said know and assured her that I would let her know when she was having halucinations.
 
She is on some additional medication because she developed a kidney infection. The hospice nurse told me that that most likely was the cause of her confusion, and that medication related confusions generally occur early in the morning and late at night. When I visited mom this afternoon, we had a good laugh about her halucination and she was just fine.
 
But, it’s hard not to be aware that there is this cloud hanging over us and someday it is going to burst. While we we there, she talked about the fact that everyday between 3-4pm, the pain around her waist seems to start building up and she has to call the nurse for a Vicadin. She called the nurse while we were there, got the pill and before I left she said the pain was completely gone. But it just serves as a reminder that it is there, lurking underneath the mask of medication, and that it will eventually get stronger and require stronger medication. Sometimes you wonder how long you have. I really try to suppress those thoughts and enjoy what I have for however long I will have it.
 
So tomorrow, surgery and more moving. I am hoping the get a lot handled this week so that I will only have to take isolated days off to complete the move and get back to work. In some ways, there appears to be a light at the end of the tunnel, and in other ways, it seems like I am just entering the tunnel.
 
It is so much better than when this all started, though. And no one is more grateful for that then I. What is happening now, I can handle. Before, it almost seemed too much. One day at a time – my new favorite motto.

Not for the weak of heart…

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Yesterday I met a friend and we went over to my mom’s apartment to plan the process for closing the apartment down. There has been so much going on lately that I asked her to help me think through a plan since all my brain could do was be overwhelmed at the thought of orchestrating a move.
 
Kathy was great. She took one look around and said, "Don’t worry, Jan, this is really doable." Then we started to talk about some logical steps to get this all done by the end of August. Kathy has a similar position to mine with the City of Lakewood, CO. She is the Director of Community Resources there, and she not only manages all of the Parks and Recreation functions, but maintains all of the city’s buildings and cultural programs as well.
 
So, first step, take the things that I want. Kathy felt very stronly that anything that I wanted I should get – and then from there ask my brother and aunt. After that, my mom’s best friend in the building, Alice and then I will also talk to the building owner. I have a call into my mom’s social worker from Hospice to see if she can align me with resources that will pack and move. If not, then Kathy will get a crew together to help pack things up and whatever charitable organizations I decide upon can gave the stuff to use for the good of others. I really do not want to sell anything – although some of my mom’s stuff is old, it is in very good shape and I would like her legacy to be that of helping others less fortunate.
 
So, I have a plan. Next week I will start. Nick has a doctor’s appointment on Monday and then he may have surgery on Tuesday depending on whether his potassium levels can be better regulated. i will take a few days and get what I need to get done in that apartment and get all of the the players and organizations lined up so that we have a system mapped out to get us out of there by August 31.
 
The hardest thing about the visit to my mom’s apartment yesterday was choosing the "outfit". By that I mean I had to choose the clothes that she would be wearing in the casket. I know, I know, how morbid can you get. But before her clothes are packed up and given away, I need to choose anything else that I think she may need at the nursing home (which is not all that much) and then I had to take into consideration"the outfit".
 
For some reason, I was pretty rationale about the whole thing – maybe because it just seems so bizarre and so distant. I choose a couple of her favorite things – a beautiful blue/black and white brocaded jacket that I bought her for Christmas, a white brocade blouse that she bought at Coldwater Creek that she just loves, black pants and black shoes. My mother never really liked to wear dresses because of her vericose veins, and so that was not an option. I brought the outfit home and put it in the back of my closet – for another day, another time.
 
Health-wise, my mother has been holding her own from a lucid perspective, but she shared with me yesterday that she cannot feel the big toe on her left foot at all, and as I mentioned a few blogs ago, her legs are no longer supporting her weight. That could very well be the result of the tumor pressing up against her spine.
 
What truly is impressing me these days about my mom is her attitude. We had a long conversation yesterday about her apartment. I felt I had to give her one last chance to say that she wanted to keep the apartment in case she becomes the "hospice miracle". She could not see paying $1,400 a month to have an apartment sit empty, especially with her nursing home bills.
 
I assured her that if she truly became a miracle, that we would waste no time finding her another place to live and have one heck of a fun time picking out all new furniture for her. She liked that.
 
She is really keeping an amazing attitude about all of this. She doesn’t dwell on the prognosis, and she is very pleased with the care she is getting at the nursing facility. From that standpoint, she has really made this much easier for me as I am not walking around with any guilt about where she is and thinking that she would be happier some place else. Thank you sooooo much, mom!
 
I think the hard part is yet to come – when I close the doors on that apartment for the last time. I think I am going to take some pictures of it. I’ll post them on this site, so that you can she the great place that she spent the last 2 1/2 years and I can have as a keepsake.
 
More later….

New pictures in Chicago album

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I’ve added a lot of new pictures in the Chicago album – most of them are Millenium Park – but also the marquee for my favorite downtown restaurant- Millers Pub, our favorite neighborhood restaurant – Southport City Saloon, some neighborhood street signs, and even the buildings that were renovated and/or built on the properties we sold. Enjoy.

There’s a few new pictures of Mia

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They’re in her photo album….
 
 
Also, by clicking on this link:
 
 
you can read all about her famous grandfather Jenner – who was one of FEMA’s top ten national search and rescue dogs. Jenner did search and rescue for the big flood in Ft. Collins, CO. and also went to the World Trade Center. Enjoy

If it’s not one thing…

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In a conversation with a friend of mine today, I was reminded that I need to try to keep my life as uncomplicated as possible because it ain’t over yet. I know it’s true. Right now it seems to toggle between issues with my mom or issues with Nick.
 
First, let me advise all of you – get long term care insurance. I got the bill for two months of my mother’s care – to the tune of $11,000. I need to check with the nursing facility to see if they put in a claim to my mom’s long term care insurance. The thing with her policy is that is has what is called a 90 day elimination period. What that basically means is the first 90 days is on her and then after that she has 3 years of paid benefits amounting to $145/day for her care.
 
It may be that all of her care has not amounted to the 90 day elimination period – but I want to make sure every avenue has been pursued before I pay that bill.
 
So today, I put in a full day of work and everything went along rather smoothly. After dinner this evening, my cell phone rings and it is the nursing facility calling. Apparently my mom’s legs gave out when she was being transferred from the commode back to the bed. This happened a few weeks ago as well- one of her legs gave out. This time both of her legs gave out and the aide had to lower her to the floor and get help to get her back to the bed. In speaking to the nurse, we agreed that from now on two people should be involved in transferring my mom out of bed to either the commode or to the chair in her room.
 
So, I called my mom and when I said, "So I heard your legs gave out – she began to cry" – she told me that she thought she was having a heart attack and when I asked her what a heart attack had to to with her legs giving out – she said she did not know. But she was really upset that this time it was both of her legs instead of just one of them. She said when her legs gave out it surprised the aide and that she lowered her to the floor but the aide hurt her under her arms while doing it. She said she began to cry right away and that upset the aide, but that she told the aide it was not her fault. She alluded to me that she feels that she is experiencing changes, but when I remained quiet to see if she would elaborate on what changes she meant – she just dropped the subject.
 
So, although an uneventful day at work and an uneventful day with Nick, we ended the day with a "blip" involving my mother.
 
Sometimes I feel like I am in a bad dream and that I can’t wake up. Dealing with insurance companies, monitoring all the bills (and there are many and the benefits can be confusing), monitoring my mother’s care, taking Nick to his doctor’s appointments (a nurse’s visit tomorrow and an appointment with his PCP on Monday followed by rescheduling his surgery), dealing with the insurance company for Nick’s car (which the adjuster totalled today) – which will mean at some point the thought of pursuing another car – closing down my mother’s apartment, working my full time job – yada, yada, yada – that’s the dream that feels that I can’t wake up from.
 
And yet there is a part of me that knows that are others that have it much worse than me – I am at least getting some breaks in the action. The key for me is focus – focus on just one day at a time – and truly sticking to that. It all doesn not have to be handled in a day, and it all does not have to be handled by me.
 
So, mom needed me today – Nick need’s me tomorrow and who knows what will happen next. Thanks for listening.

A breather…

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I took my aunt to the airport and then went into work. It is very hard to pop in and out of work and be engaged, much less be helpful or supportive of staff or provide them with some sort of leadership. I will be at work for another day, then off for a day and a half and then…. who knows?
 
They are all so supportive – I am amazed at how supportive they have been with the burden I have placed on them. But they are great people and I am blessed to work with such a great group of people.
 
As this whole series of events have been unfolding (and as I have mentioned before) people tell me that there will be positive things that come out of this. So far, the kindess of the people in Wyoming, the support of some very close friends, and the great support I have gotten from my staff have shone through all of the clouds. I realize that even in hardship, that I am blessed – I work with a great group of people – there are still people who will be empathetic and compassionate even though they are strangers – and I still have my mom, and I still have Nick.
 
So, today has been a take a breather day – and that is what I have done. A colleague of mine who has gone through some very difficult times in recent years reminded me not to let the highs get too high and the lows too low. I think that is pretty good advice. It is not that you are selling yourself short – but in times of uncertainty it is good to remember that happiness and smiles do exist and will come – as well as sadness and grief. Try to ride the waves and remember that when you’re in the thick of it, whether good or bad, that things will change.
 
More tomorrow…
 
 

Our very own “Cheyenne Days”

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For those of you that are not familiar with Cheyenne Days, it is a big 10 day festival in Cheyenne, Wyoming – the biggest thing going on all year. We drove there today, right in the midst of Cheyenne Days. Before you start feeling sorry for me, it really was not a big deal – there was not that much going on during the time we were there, but the main street in downtown Cheyenne was all decked out in red, white and blue bunting and the city looked very patriotic.
 
We met Trooper Page in the rotunda of the capital building. That was not for sight seeing purposes, but becuase today his duty was to staff the state trooper desk in the rotunda. Trooper Page is a very decent man. He was very empathetic to our plight. I thanked him again for releasing our car over the weekend so that we would not have to pay the $60/day storage fee until we could get up there this week.
 
Everyone has been telling me that all that is happening right now is happening for a purpose and some good will come of all of this. Well, I saw some of the good today. The Trooper told us that technically there were four violations that Nick could be cited for – leaving the scene of an accident, damage to state property, failure to stop at a stop sign (and one more that is escaping me now).
 
He told me that he had a conversation with his boss, and they decide to just issue warnings on 3 of the 4 issues. The only thing that he had to, by law, was to write a ticket for failure to stop at a stop sign. So he wrote the ticket and the whole Wyoming escapade will only cost us $50.00. That particular ticket is also not the kind of ticket that goes against your driving record, so Nick will not have any infractions against his license as well.
 
Trooper Page thanked us for travelling all that way to do the paper work, and we thanked him for his empathy and for saving us a lot of money and aggravation. I guess it pays to be honest and sincere. Even the tow truck company that towed Nick’s car back to Erie gave us a break on the price. Usually a longer distance tow of this nature is charge per mile. The owner of the towing business gave us a flat rate and saved us over $100.  All in all, the people in Wyoming were very gracious and empathetic and Nick and I got home today, grateful to have that chapter closed and grateful for the care and concern that people showed us.
 
While we were in Wyoming, Trooper Page told us a story of the funniest accident he ever investigated. He was quick to say that no accident is a laughing matter, but that in all of his years of accident investigation (and that his major role with the Wyoming State Police), this one was the most bizarre.
 
He said he was radioed about an accident involving a vehicle that overturned and he was so close when he got to the vehicle the wheels were still spinning in the air. He immediately radioed for an ambulance, and as he approached the vehicle he heard laughing. When he got up closer to the vehicle and looked into the window he saw feet and more laughter. He tapped on the window and asked if everyone was ok.
 
An older gentleman answered and said they were ok and there was laughter again. The Trooper asked them if they were drunk and they said no. They got the old man and woman out of the car, and sure enough they were not drunk. When the Trooper asked them what was so funny, the older man said that once the vehicle stopped and he got himself out of his seat belt that his wife was still strapped in. When he loosened her belt, she fell head first to the roof/floor and proceeded to give him a piece of her mind. Then she saw how ridiculous that was and started to laugh, then they both started to laugh and soon they could not stop.
The Trooper was surprised no one was hurt, and he said that that was the most jovial accident scene that he ever attended.
 
So, morale of the this story and Nick’s story – wear those seat belts – they really do save lives. Also, the people in Wyoming a great people – I am very thankful to them for their emapthy and support. Some good did come out of this situation.

Ankle surgery on hold…

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After meeting with the primary care physician (PCP) today, the ankle surgery is on hold. Yesterday they did some blood work on Nick and his potassium levels are two high and his electrolytes are not in balance. So, the doctor is changing his medication slightly and we will do more blood work on Friday and see the the PCP again on Monday. Then we will move from there.
 
Nick’s chest x-ray was ok, and his blood oxygen level was excellent (99). He was a little anemic (sp?) but his anemia was stable from the last time his blood was tested a few weeks ago and so the doctor felt that with continued good nutrition that that should not be a problem to build up.
 
So, we will wait in see if the change in medication wil assist Nick in getting things back in balance.
 
 

Next stop – ankle surgery

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I guess I should feel good about the fact that we were able to see both an orthopedic doctor and our primary care physician both in the same day. I was very impressed with the orthopedic doctor who was on call Friday – he told the doctor in urgent care that he would try to schedule an appointment with a colleague since he was going to be on vacation this week. The doctor at urgent care gave me a list of doctors and said that if Dr. McCarty (the doctor on call) did not call me, then I should start calling on Monday to see if I could get an appointment with someone.
 
So, I figured I would have to do that since I really did not expect Dr. McCarty to try to arrange that for us with his impending vacation and all. And yet, bright and early this morning, Dr. McCarty calls and says he’s arranged an appointment with a colleague and that all I would have to do is call him. And it sounded like he was calling me from wherever he was on vacation. I was impressed and very grateful to him.
 
We saw the orthopedic doctor early in the morning and it was fortunate that we did. He had a bunch of tests that he wanted our primary care physician to run and we already had an appointment with him for this afternoon. So the scheduling worked out perfectly.
 
Dr. Repine, the orthopedic doctor, looked at the x-rays and recommended that Nick get two screws in his ankle – so the surgery is scheduled for late in the day on Thursday. It is being done at the hospital but Nick does not have to stay overnight.
 
Our primary care physician wants to give Nick a physical tomorrow and today he did a chest x-ray and drew blood. Then it will be off to Cheyenne, Wyoming to finalize the paperwork on the accident. My aunt leaves early Wednesday morning and I have to drive her to the airport. And then I hope to go into work for a few hours both on Wednesday and Thursday.
 
Then the next major thing will be to start the moving out process for my mother’s apartment. I am going to call a couple of friends and ask for some help. When I think about doing that, I just really get overwhelmed – but I think some good planning and with the help of my friends, I can pull it off by the end of August. I’m not sure how much Nick will be able to do, but I know he wants to help. We’ll see what happens after Thursday. Bottom line, the doctor says he has to be off of that leg for 6 weeks.
 
So, we got a lot done today, and that is always comforting to me. A lot was accomplished and the drama was kept down to a minimum. Having been a theatre major in college, I’m surprised at how much I am trying to eliminate the drama in my life – I think there is a little difference between the two, though.
 
More tomorrow – I will be glad to get this trek back to Wyoming over with.

A much quieter night

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 Well, it is Sunday night and I am sitting in my overstuffed chair in my family room. The movie "Something’s Gotta Give" with Diane Keaton and Jack Nicholson is playing in the background. Nick is sleeping, Mia is laying at my feet and the cats are in the bedroom. All’s quiet, and I grateful for that.
 
The last few days have been very stressful, but I made it through. It seems I always do.
 
When I was in Urgent Care with Nick on Friday and they came back to say he had a broken ankle, I lost it. The staff there was great – they were very concerned about me and they reminded me that I have to take care of myself. Part of that is finding some help to help me deal with the mental and emotional strain I am under.
 
This week I am going to research a therapist for me. I think that that will be helpful. I had someone tell me yesterday that because I am so independent, that I put pressure on myself to do everything and to solve everything. She told me she thinks I may have forgotten how to ask for help. I think she was right.
 
I have always prided myself on being able to handle anything – but this situation has really tested me on a variety of different levels. I’ve never been good at failure – and I don’t think failure is even the right word. Maybe that’s the problem. A person doesn’t fail because they need help or they become overwhelmed. I guess contrary to popular belief, I am not superhuman after all. And you know what, I don’t want to be – that’s way too hard for me.
 
Today I went to see a mindless movie – My Super Ex-Girlfriend. I knew it would be fluff, but it also stars and actor that I like – a guy by the name of Luke Wilson. Luke had a great part in the movie "The Family Stone." (BTW, if you haven’t seen The Family Stone – see it. It stars Diane Keaton – there she is again – Sarah Jessica Parker and others including Luke Wilson) He played the rebel child – Diane Keaton, his mom, greets him at the door as he is coming home for the Christmas holiday and immediately tells him there will be no pot smoking in the house and that this year for Christmas, clothing is not optional as they have a guest in the house. So that sets the stage for the prodigal son returning home to have Christmas with the rest of his siblings. Anyway, not get too far off of the track, but The Family Stone is a great story about family relationships and family hardship.
 
So, I saw this movie today, and I was surprised – it was pretty corny but it was funnier and more clever than I thought it would be. I am not recommending anyone to go and see it – but it was perfect for getting out and getting your mind off of things. Now, if you really want fun and a great movie – see Pirates of the Carribean. It’s great – and although I am not a Johnny Depp fan – he is phenomenal in the movie.
 
The point of this movie tangent is that I did take some time today to do some stuff for myself and it felt good. There is something about being out in the world doing "normal" things and experiencing other people doing "normal" things that is very therapeutic. I remember when I flew down to see my dad right after he had his injury (that caused him to be quadreplegic), I remember going to a restaurant with my mom that evening and being grateful just to sit there and watch and listen to people having normal conversations and doing normal things because the stress of seeing my dad injured in that way was a little more than I could take.
 
I certainly hope when things level off that I don’t forget to enjoy and appreciate the every day things I do – they signify that life is moving along in a way that is not traumatic and that is something to truly be thankful for.
 
So, it appears that I am rambling, but that is what is going through my mind this evening as I am enjoying and really appreciating the solitude. I am thankful for this time – very thankful. And as Scarlett O’Hara so prophetically opined, tomorrow is another day!

The car came home yesterday

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Well, the car came home yesterday – and if you look in the photo albums area of this site you can see what happened.
 
I was shocked to see the car, but grateful that Nick walked away from that accident with only a broken ankle and a couple of cracked ribs. I am so glad no one else was involved.
 
We will notify the insurance company on Monday. I think they will total the car – Nick doesn’t think so, but we’ll see who guesses right on this one.
 
Meanwhile, it is an interesting topic of conversation for the neighbors, sitting in our driveway with the carnage in full view of all. Don’t get me wrong, I really don’t care what people think – it is a car – a machine that can be replaced. It just looks so horrifying and I know people will be concerned that everyone is ok.
 
I am going to take some time for myself today – maybe go to a movie and then go to dinner with my aunt. Next week its doctor visits (orthopedic and primary care physician for Nick) and back to Wyoming to finish up the police paperwork on the accident. My aunt leaves Wednesday morning, so I will need to pick up the slack with my mom’s care. Then I will have to start the process of closing down her apartment by the end of August. Did I mention, by the way, that I have a full time job?
 
Please let me know if I am starting to start to whiny – I really think I do take responsibility for my life and for what I have responsbility over – it is just that these days it seems like I have responsibility over the world – and it gets a little overwhelming.
 
 
Thank God for friends who offer words of encouragment and support, animals for giving you unconditional love, and for my mom who taught me how to be so independent (sometimes to the point of detriment).
 
 

Was I a fortune teller? Thursday and Friday hit an all time low for me…

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In reading the title of my last entry, it occurs to me that I must have know all along something was coming. Yesterday I hit an all time low – I mean it was pretty bad.
 
I mentioned earlier that Nick came home on Monday. I hesitate to discuss his health issues specifically as they are very personal, but I can share that they are serious and his rehabilitation will take some time.
 
But let me start the story with Wednesday night. I came home from work around 6pm – and Nick’s car was not in the garage. Not room for alarm, as I thought he would be home soon. I made myself some diiner as Nick and I had discussed earlier that we should fend for ourselves for the evening.
 
At 8:40pm I got a call from Nick – he was lost – he was in WYOMING and he wanted directions on how to get back. He said he was off of I80, but I had no idea where I80 was. I asked him if the people at the place he was at could give him directions to I25. He said that they could, and so I gave him directions on how to get home from I25 South.
 
At 1am in the morning when he was not home, I did a search on the internet to locate the number from which he had called. The number was listed to Rawlins, Wyoming. Just for a point of reference, the Wyoming state line is not all that far from here, about an hour and fifteen minutes. But Rawlins, Wyoming was 340 miles from Erie and estimated on mapquest to be a 3 hr. and 40 minute drive from Erie.
 
By 5 am (being up all night and pacing) when he had not arrived home, I called the Erie police, the Wyoming state troopers and the Colorado state troopers. I gave them the information about Nick and his car, and they told me they would do a BOLO on him (be on the look out).
 
At 6am I got a call from Nick. He as at a Wendy’s off of exit 7 on I25. When I asked him where exit 7 was, he asked the staff and they told him Cheyenne – he was still in Wyoming. I told him to sit tight and I would drive up there and get him back home.
 
When I got up there he looked awful – very drawn and very tired and I think very scared and he did not have his car. When I asked him where his car was, he said that it was in a ditch. When I asked him how that happened, he said that he was turning off the road to get some gas and since it was dark and the road was unfamiliar, he went off the road into the ditch. I look around the area at the exit, but could not see his car. When I suggested that we locate his car, he did not want to – all he wanted was to go home and go to bed.
 
So, I took him home. The Erie police had called me right after Nick called me to tell me that the Wyoming state troopers had found him and asked that once I picked him up to call them back and confirm that I had him so that they could close the case file. When I called back, I mentioned the missing car and they said they would note that and that I should let the Wyoming state police know as well. When I called the Wyoming state police they said that the officer that found him made no mention of the car – that when the found Nick he was "crawling" along the side of the highway.
 
When I questioned Nick about that, he said yes,  he was crawling as he hurt is ankle and it was sore and it hurt to walk. I asked the Wyoming state troopers to be on the look out for his car and they said they would. Later that day, some of my friends drove me back to Wyoming to see if we could locate the car, but we could not. That night, Trooper Page called and said they located the car, but that he was going to impound it because there were some questions that needed to be answered. He talked to Nick and then to me. Apparently the rut in the ravine by Nick’s car was 127 feet long, but it appeared that the breaks had not been applied. When we asked Nick why he did not apply the breaks he said he did not remember and he did not know.
 
So, I made arrangements to bring Nick to meet with Trooper Page on Friday at 3pm. Needless to say, Nick slept most of the day on Thursday and after my friends and I returned from our fruitless journey of trying to find the car, Nick and I went out to get a sandwich.
 
That night, Nick said his ankle was really hurting him and he asked me to take him to urgent care the next day. He complained of pain in his ankle and his side. We went to urgent care and they did x-rays and sure enough, he had a broken ankle and two cracked ribs. We were there for so long that I had to cancel the meeting with Trooper Page as we never would have gotten to Wyoming on time.
 
When I found out the news about Nick’s ankle, I lost it.  I am really beginning to wonder when this will all settle down and how much more I can take. Now I have two completely dependent people relying on me, plus I need to start the moving out process for my mom’s apartment, I need to get Nick to an orthopedic specialist next week as well as his primary care physician, work a full time job and deal with getting his car back from Wyoming. And this is just Nick – when my aunt leaves on Thursday, I will have to resume the responsbility for my mother as well.
 
One bright spot in all of this – Trooper Page called last night and said he was releasing our car so that we would not have to pay the daily storage fee until we could get up to Wyoming to finalize the paperwork. Getting Nick’s car back to Erie will cost us $440 in towing fees
 
So, after I got the news about Nick’s ankle, of course I had to research how to assit him with being mobile. Being that he is still weak, crutches would not do. So I found this device called a "rollabout" – it is designed so that you can put your knee on it and slide around (like a scooter) with your good leg. I had to go and pick that up and he is using it and it has been good for him.
 
The place that had the rollabout was in Longmont (where my mom is) and I remembered that she got a rolling walker with a seat right before she went into the hospital. She had never used it. So I called my aunt on the way to Longmont and told her that I would stop by the nursing home, get my mom’s keys and go pick up that walker so that Nick could use it as well. She said ok.
 
A few minutes later she calls me and says, "Oh honey, I am so sorry, but I forgot the keys in your mother’s apartment when we left to come here, today and I do not have them."  Well, for me, that was the straw that broke the camel’s back. She told me that I could try to building maintenance man and see if he could let me in. I hung up and began to cry histerically. Couldn’t I just have some time where I did not have to solve everyone’s problems?
 
My job demands that I problem solve literally the whole time. Now I am consumed with my mother, Nick and then I have to solve my aunt’s problems as well?  Please let up on my a little, will you?
 
I was so angry I could not see straight. I cried, and cried and cried for about 10 minutes and then I got to my mom’s place, reached the maintenance man and he let me in, and I got the walker and the keys.
 
Then I went to the nursing home and dropped the keys off to my aunt. For two days my mom did not know what was going on, but I felt I should tell her. I told my mom and my aunt that I was angry, not at them but at what was happening. Then I get the answer that I get from so many people – "Oh dear, we’re so sorry, we wish there was something we could do". But the truth is, there is nothing anyone can do – I am in the midst of this incredible mess and I have to play the hand that was dealt to me.
 
What I have learned is that it is so helpful to get my feelings out – not to couch them but to tell it like it is. Hence this blog – which is not mincing any words regarding the situation and how I felt about it at the time.
 
Last night, things calmed down and I got to bed early and slept for 10 hours and so I am feeling a litttle better this morning. It frightens me that somehow I knew I was experiencing the calm before the storm – and when the storm came, I was certainly not prepared for its intensity.
 
Today I am going to do things around the house – the car is being towed back here today and I have paperwork (two household to be in charge of) and day-to-day stuff that needs attention. You can see I am still a little angry and bitter, but I think once I get my butt in gear, I will at least have a sense of accomplishment getting some things done.
 
Thank God the people at work have been so supportive. I cannot say enough how much FMLA is such a gift, especially to those of us in the sancwhich generation who are or will be facing these incredibly difficult situations.
 
And thanks to all of your for listening to my ramblings. It helps.
 

The Calm Before the Storm?

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Isn’t it strange that as human beings we sometimes can’t feel good about things when they are going well. I guess I have been through so much within the past 6 weeks that now that things are holding their own, I am waiting for the bomb to drop.
 
I really have to let this go. It is so important to appreciate the moment and what you have, because that is really all that you truly have – yesterday is gone and tomorrow we can only speculate about. Making the most of the moment, of the time you have with people you care about and trying to keep the noise in your brain from taking you somewhere else is so important. If only I could get better than that.
 
I think we really hit the jackpot with my mom’s meds. She is still as clear as a bell and has been that way since last Friday (the longest run so far). We have discontinued some meds, but we are keeping an eye on that. For example, we have discontinued my mothers lasix (I diuretic that assists the body in releasing fluids).  Since then, we’ve  noticed that her left foot is slightly swollen. That is not a big deal, but we need to monitor it and if it gets worse, we may need to consider reinstating the drug.
 
I had a great conversation with mom this morning. And she is so enjoying my aunt being here. It has been such a gift for her and I am so glad that she is enough in the here and now to enjoy it. So, that is what I should focus on and count each day as a blessing. It is hard when you feel like you have this ominous thing hanging over your head. But I will continue to try.

Marley and Me

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 I’ve included on this space an area for books – I have to admit I am not an avid reader, but I read a book recently that had me riveted and it really touched my heart. It’s called "Marley and Me" by John Grogan. Click on the title in the book list box and it will take you to the book’s website.
 
I was so moved by this book when I read it that I went to hear the author speak at the Boulder Book Store in February of this year. It is a simple story of a spirited yellow lab and once I started reading it, I could not put it down. (of course my affinity for animals, especially dogs is showing now).
 
The book was number one on the New York Times bestseller list for a while, and I think you’ll enjoy it.
 
I’m all ears for any books that you might recommend? (You can comment on these blogs as well). I’ve included a photo that shows something Marley would do.  Click on it to get the full effect.

And the beat goes on…

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  I’ms not sure I told everyone this part of the story, but during all of this adventure with my mom (the past 6 weeks), Nick was sick, in the hospital and then in rehab. I am not going to go into the details of his illenss, that is his story to tell, but needless to say during all of this time I was dealing with health crisis with the two closest people in my life.

 
The good news is, Nick came home today. He is still a little weak, but he is on the mend and that is very encouraging.
 
I took the day off today to pick up Nick and get him settled at home. Since I did that, I decided to take a quick trip and visit mom. She is still very lucid – I think our decision to change some meds really did the trick. She is also really enjoying visiting with my aunt – it has given her a resurgence that I am very happy about.
 
For the past two days my mother was saying that she had a taste for cheese curls and cracker jack, and so I brought some to her today. It was as if I had given her a million dollars. (Oh, the simple pleasures of life).
 
I have a killer week this week – two night meetings and so my time will be spent concentrating on work. Slowly but ever so slowly, things are moving in a direction – I’m not exactly sure what direction, but it at least appears to be moving into something that resembles a little more normalcy and a little less crisis.
 
I really have to say that I appreciate the small things much much more now – reading the paper, walking the dog, going to work , etc. It is so nice, at least for the momtent, not to have some intense crisis in my life – and things that I used to think were crises just don’t seem to measure up to that standard anymore. I think that has been one of the blessings of the past 6 weeks. I am really thankful for the little things.
 
 

Thank you for the calm

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I am so grateful for a calm weekend. To do things that we take for granted and consider normal have been such a joy for me. Yesterday I went out to breakfast – WOW. I also went grocery shopping – DOUBLE WOW – what fun! The truth is, it was relaxing and calming to do just mundane things and not to worry about life or death or making health care decisions or worrying if someone is going to recognize me.
 
I visited my mother yesterday afternoon. My aunt, Sister Teresita, was there along with her travelling companion, Sister Grace Carol. My mom was very lucid – like she was entertaining guests in her home. I could tell she was feeling more like herself because she was not liking the fact that her meal tray was still in her room (my mother is anal about neatness – the second you are finished eating, according to her, you are supposed to get up, clear up the dishes, wash them, dry them and put them away. Oh, and dishwashers are a no, no – use the sink because the old fashioned way is better). Then I got a compliment from one of the sisters and my mom’s reply was – of course she’s good – she’s my daughter (another innate part of my mom’s true personality – I am not good on my own, I am good because I came from her). And then the orders started – Jan you need to do this, and Jan you need to do that….   Normally, these aspects of my mother’s personality are the one’s that always drive me insane and the ones that generate the most tension between us. But, I have to admit, with being faced with not being able to experience what is truly my mother again, I was able to let things just roll off of my back and simply be grateful for the fact that she was with us in her true personality and in her own unique way.
 
She also got a new medication patch put on yesterday so we will see if there is some sort of correlation between her delusionary episodes and putting on a new patch. According to the hospice nurse, this roller coaster of ‘"is mom going to be playing with a full deck today" could be a result of the changing of the patch and the initial infusion of the strong medication, or it could be the cancer spreading to the brain. We’ll see what happens with the patch change.
 
It was so nice to spend so much time with her and with her being as clear as a bell. Everything was going along very pleasantly and then she started to feel some new pains in her back and so we had to call for some pain medication. It was almost a cruel joke – she seemed so normal, almost like she was ready to go back home, and then the cancer reared its ugly head in the form of pain and reminded us that it is truly lurking in the background. I am so glad we have the ability to manage pain now and keep people as comfortable as possible while the cancer does its dirty work. That is definitely a comfort.

I’m so glad my friends are reading this…

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It has been interesting and rewarding to do this journaling and also very therapeutic. As I reread some of the entries, it is amazing how cathartic it is for me. But one thing that I didn’t really think about when I began this process was the comments, opinions and words of support that I would get from my friends who are reading my ramblings. That has just been a totally unexpected blessing – almost like being covered by a warm blanket or snuggling with a puppy. What a joy and a comfort.
 
It was amazing how much support I got for the decision I made regarding not doing the cat scan and the potential brain radiation. People shared stories of similar situations they had been in – one colleague at work told me that during her treatement for breast cancer, and while she was doing radiation therapy, there was another woman she met who was getting radiation on the brain. She told me that that woman suffered many complications and that the side effects where intensified because the brain was the targeted area. So, for as much angst that I had when I made the decision, now I am completely comfortable with it – thanks to all of you.
 
This journaling process has been another very important way for me not to feel so all alone during this time. It is an unbelievable responsibility to manage someone’s health care. (Makes me appreciate even more what it must be like to be a parent)  You are constantly second guessing yourself (or at least I am) about are you making the right decision for the person, or are you making the decision to suit yourself?
 
I am beginning to believe that all decisions made with care and love are the right decisions. We are not God and we certainly do not know what the future will be – so all we can do is simply the best that we can. And that is what I try to do.
 
Now, on to my mom. Well, yesterday was one of those great days. I did not call her in the morning since she was pretty out of it the day before and I knew my aunt would be there. So after work I called her, and she sounded great – 100% normal. So, this delusion phase thing seems to go in and out. I’m not sure if it is tied to my mothers medication patch which is changed every three days (we are going to monitor this to see if the pattern coincides) or if it is the cancer spreading to the brain, which the hospice nurse tells me in all liklihood it will.
 
I remember when my mom first starting experiencing the pains in her back. She would have them for a while and then they would disappear. For a while she would have them in the morning and then at 1pm they would magically go away and be gone for the rest of the day. She would never have them when she was sleeping and then all of a sudden the pain would start waking her up. The pain continuted to intensify and laster longer until it became unbearable.
 
I wonder if this could be a similar pattern beginning to occur. I’m not sure if these phases are due to the changing of the medication patch or perhaps to the spreading of the cancer – I think time will give us a better indication of that.
 
All I do know for know is that it is so wonderful to have my aunt here – she is being so helpful and I know she is relishing the time she is having with my mom.
 
One more thought… because my mom was so lucid yesterday, I shared with her my decision about the cat scan. She totally agreed with me and said that she did not want to do any radiation on the brain. She also said – oh I forgot – when the doctor visited her on Monday, the doctor told her to tell me to call her. I’m not quite sure why the doctor would put that responsibility on my mom, particularly in her condition and with the phases she goes through – I did not think that was very smart. But no matter, the procedure is not being done and yesterday was a great day for my mom. Just one day at a time……

Caregiver’s day off

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Since my aunt is here, I will be taking a day off from visiting mom. My aunt will call me later to give me a report on the day. I think I will do what "normal" people do today – go to work and come home. What a concept.

Quality of Life or Needless Treatment?

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I picked up my aunt at the airport this morning. It was great to see her and great to know that I will have some support the next couple of weeks dealing with my mom.
 
I warned her to be prepared – that mom was looking pretty frail. She handled seeing mom very well. While I was at the nursing home, mom’s hospice nurse pulled me aside and asked me if I was aware that mom’s primary care physician ordered a cat scan of the head for my mom. I said no and asked what the purpose of that would be. The nurse said she could only think that the purpose would be to see if the cancer had spread to her brain. The nurse asked me how I felt about that, and I told her that I did not think that my mom should be put through any more medical procedures  unless it was going to produce some significant change in her. The nurse agreed and said she would call my mom’s primary care physician.
 
A few minutes later the nurse came into my mom’s room and said the doctor wanted to speak to me. The doctor told me that she thought that if the scan showed the cancer had spread to the brain, that some radiation treatments might give her more lucidity for her remaining time. She was careful to say that the treatment would not give my mom any more time, just perhaps some better quality of life.
 
I told her that I did not think it was a good idea – that the prior radiation treatments had been hard on my mom and that as she is getting frailer, I just did not think the trauma of this was a good idea. I told her that my mom had gotten sick after every prior radition treatment and threw up. She insisted that vomiting could be caused by the brain tumors and not the radiation, but I told her it was strange to me how mom only vomited after the radiation treatments and never at any other time. She kept insisting that my mom was aware that there were times when she was delusionary and that was different than a patient that had dimentia and was not aware.  Thtat the current situation was affecting her quality of life.  I told her I needed to think about it and get back to her.
 
Thank God my aunt was here. I asked the hospice nurse to meet with me and my aunt and I explained the situation to my aunt. She immediately shook her head no and said that she did not think that we should put mom through that. I was so glad. I started to cry and asked if they thought that by not doing this I was killing my mom. Both said no, and that at her age and in her present condition that this treatment would be too difficult for her. And in the end, it was not going to give her any more time.
 
I was so grateful to have my aunt there to assist in my mom’s health care decisions. I have been making them all on my own up to this point, and it seems that at a certain point you really question if you are doing the right thing or not.
 
I also think the medical profession could do with a little less treatment and a little more sensitivity. I have asked the facility to inform me if the doctor orders any more treatments of this nature so that I can be part of the conversation to determine if it is in my mom’s best interest to pursue.
 
I know in my heart I am not killing my mom – I just pray that I am doing the right thing.

The Money

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I never know what to expect from day to day. This morning I called my mom and said,  "Hi mom, how are you" and her reply was "How do you think I should be?" – so I thought, here we go.
 
So mom, what’s wrong. She proceeded to ask me why my aunt wouldn’t say anything to her – that she was doing all the talking and that my aunt was just sitting there and tsking at her. I told the reason why my aunt wasn’t talking is because she was not there yet and would not be there until tomorrow. She said that I told her that she would be here today. When I told her that when I talked to her yesterday I said she would be here the day after tomorrow, she insisted I told her tomorrow (meaning today, Wednesday).
 
I told her my aunt was not in her room, and that she would not be here until tomorrow. Then she asked me about her money. She said that I told her that I had a conversation with Bob (my brother) and that we "cut a deal" and divided up her money. When she asked me how her health care bills would be paid as a result of this deal, I supposedly told her that that was not my concern and it was her problem.
 
Then she told me that I told her that I lost her wedding ring.
 
I proceeded to tell her that none of that was true. I asked her if they changed her medication patch today – she said yes- and it seems like the first day when they change that patch that she is more delusionary than on the second and third day (the patch gets changed every three days). I told her that I understood her fears and that because of her situation that she had to put her complete trust in me, but that I guaranteed that her money is her money and that it will be used to take care of her and that I did not cut any deal with Bob. I told her that I had her wedding ring in a safe place (she gave me both her wedding ring and my grandmother’s wedding ring when she went into the hospital.) I told her that I was wearing grandma’s ring but that I would not wear hers, because it was hers, and if she "graduates" from hospice as she maintains she will, that I will be more than happy to put that ring back on her finger.
 
She started to cry and said that she was sorry for putting me through so much and that she must be losing her mind. I told her she was not losing her mind and that she was taking very powerful drugs and unfortunately that was part of her pain management and unfortunately they do play havoc with your mind. I told her it had to be hard to deal with all of this, trying to separate what is truth from what is not, but I hoped she believed in me and had enough faith in me to know that I was not lying to her and that I would indeed take care of her.
 
When I called her this evening, she was still a little loopy but when I asked her if she remembered our conversation this morning, she said that she did and that the conversation was such a comfort to her that she was able to get some sleep during the day – she said her worries prevented her from getting much sleep the night before.
 
So, I was happy to hear I was able to comfort her. But it got me to thinking how terrifying it must be for someone to feel so out of control and out of the loop and truly have to rely totally on someone else for everything in their life. It’s not that she doesn’t trust me, but the thought of being that completely dependent is mind boggling.
 
The good thing is that there is a part of her that can separate herself from the drugs and see the delusionary side for what it is. I’m not sure how long that will last, but I am glad she has the capability to do that.
 
How terrifying this has to be for her. That really makes me very sad.

Caring for older adults

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As I was leaving the nursing facility today I stopped and had a chat with the facility director. She told me that the feedback she got from staff regarding our care meeting was very positive, and she was glad that they listened to me and that they came up with some ideas on how to enchance my mother’s care.
 
I mentioned to her what I said to the staff at the beginning of the meeting. I feel that people who do this type of work are truly extraordinary people – I think I called them angels. The work is so hard and sometimes thankless and can also be depressing. I told her of my concern for the future – for us "baby boomers" and how our care will be approached.
 
I remember I felt this way when my dad had his accident (he had an accident that made him quadriplegic and he died 18 months after the accident), and I find myself feeling this way again. I really question whether we keep people alive too long.
 
I am not trying to say that we should kill people off, but at some time we lose our quality of life and we become something that is not us – not even close to us. And yet we have the drugs and the technology to keep people confined to beds for their entire day, or confined to beds and wheel chairs where they sit, stare and just exist.
 
I’m not sure what it right – but the thought of living that way really scares me.
 
And then, there is this whole group of wonderful people who dedicated themselves to caring for people in this stage of their life. Not all of them are all that altruistic, but most that I have seen in this facility do things on a day to day basis that I cannot imagine myself doing  – and yet they do it in a graceful and caring way.
 
When I spoke to the facility director, I mentioned that I though that as a society we do not have a clue of what to do with people as they age and get sick. And the problem may only get worse as my generation continues to age. Where are we going to put people – who will take care of them – what is it going to cost?
 
And the saddest thing of all, what do we pay people who devote themselves to providing this critical kind of care? This profession and the teaching profession, in my estimation, are the two most underpaid professions in our country. And yet we say we value older adults and that our youth are critical to our future success. The logic escapes me…..
 
I truly hope their comes a time when we figure out what top notch care for older adults is, and provide it as a matter of course, and not simply to those that can afford it.
 
My mom is fortunate. When my dad died, she decided to take out nursing home insurance, so much (but not all) of her expenses are being covered. And she has me to watch over her care and to make sure things are going the way that they should. But I understand from the staff there that she is the exception and not the rule. So what do you do for those who cannot afford and do not have family or friends that can  adovcate for them and/or assume the 24/7 caregiver role (and should that ever even be an expectation) – who worries about them – who cares for them.
 
My mom has me – I have no children – I guess maybe someday I may be faced with being in some broken down institution with no one to advocate for me and no one who cares. That also is scary. But if that occurs, hopefully I will be so blissfully unware because I have been kept alive longer than I should have and my brain is mush, and I won’t even be aware.
 
Just some dark thoughts that have crept into my brain…….
 
 
 
 

Back in the world of the living!

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I just got back from the nursing facility – the nursing staff, the hospice staff and I had a general meeting about my mom, her medication, communication, etc. It was a great meeting – everyone was open and willing to listen and roles and responsbilities were further clarified.
 
The interesting thing is that my mom is so lucid it is scary – it’s almost like she doesn’t have cancer but is merely recuperating from some type of illness. She is herself, and that is so great to see – of course we do not know how long it will last – but I am focusing more on now and the future will bring what it will bring.
 
This is so weird – going from a place where I was afraid she was in the process of dying (Friday) to today where it looks like all she might need is just a little bit of physical therapy and she could walk out of the joint.
 
One indication that she is ill is that the least amount of activity really tires her out. The nurses aid came into her room to bathe her and change her clothes and after that she needed to get some rest. But, I am so happy the the personality that I know is my mom is here – I hope it can hold on during my aunt’s visit – that would be great for both of them.
 
So, back to work – and let’s hope for the best for as long as we can have it!

Back to Work

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Today I went back to work after being off for a month. I never thought that on a Sunday night I would actually be thinking about looking forward to going back to work on Monday – but I did.
 
It was great to do something that had a sense of routine – a sense of "normalcy".  Everyone was so sweet – so many people commented on the fact that it was nice to see my car in the parking lot again.
 
Before all of this happened, I was in the habit of calling my mom every day – once on the way to work and once on the way home. So, when I got in the car, I hooked up my bluetooth ear piece and called mom. It was unbelievable. Today, she was more lucid than she has been in a long time. It was almost like she was home in her apartment and I was doing my usual weekday routine.
 
Later in the morning Pat, the hospice nurse, called me to report on my mother. She confirmed how well my mom was doing today and she said she thought the new medication regime that hospice prescribed may be a contributing factor. I was just so glad to have mom back – and I intend to enjoy it for whatever precious moments I may have it.
 
I called mom on the way home from work and she was just as lucid, if not more, than she was when I called her this morning. We talked about work, we talked about her sister coming for a visit, and she wanted to make sure that all the arrangements had been made to pick up my aunt at the airport and to get her to the apartment, pick up the rental car and map out directions to the nursing facility.  I was blown away that she was thinking with that degree of detail. She also appeared to be in a good mood and positive about getting stronger.
 
I am so grateful that we are having this glimpse of time with her. I hope that she can stay this way until Thursday and beyond when my aunt arrives. I called my aunt to let her know the good news, and she was so happy to hear that mom was doing better. It is a small but also a very big blessing.
 
I told my mom that her condition today eased for me the anxiety of going back to work. I know she is happy about me going back because she does not want her situation to jeapordize my job in any way. And, I know she is aware of the stress I have been under and she wants to see it as minimized as possible.
 
So today was as normal as it can get under the circumstances. I told people at work that the one thing that I’ve learned so far is that difficult situations like this really put the pressures of work into perspective. All of the things that we get worked up about or that seem so significant pale in the light of dealing with the life and death issues regarding your loved ones. So bring on the prairie dog issues, the mosquito spraying issues, or even the contentious opinions about our department’s master plan recommendations – because in the scheme of things, it’s just a job.
 
 
 
 

The Roller Coaster

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What a roller coaster ride I am on. Friday I thought my mom had one foot in the grave and then yesterday I go into to her room – she is sleeping and I wake her up – and the first thing out of her mouth is "I’m hungry, when is it time for lunch? So lunch comes – cottage cheese and peaches with pudding for dessert and she proceeds to eat about 3/4 of it. She drinks milk (which she never used to do unless it was with cereal) and then asks me to get her some coffee.
 
I spent a couple of hours with her, and she was as lucid as I have seen her in a long time. I felt bad about leaving, because she looked like she could get out of bed and walk around the block. As I was driving home, I called her to see if she was bored and she told me she was sleeping and that she was tired and wanted to go back to sleep. OK – so much for all of that energy.
 
While I was with her, I got her sister on the phone. My mom had two sisters (both nuns  – Sisters of Saint Casimir in Chicago- one taught at Maria High School and one was a nurse at Holy Cross Hospital). My mom’s oldest sister (my mom was the baby in the family and there was one boy in the mix as well – my uncle Vic who died two days before 9/11 so no one could get to his funeral) died last October. She had anorexia of all things. My mom had pursued a fitness regime ever since she retired. My mom and her oldest sister were always competitive – the looked almost like twins and had very similar personalities. When my mom started to lose weight, Sister Margaret started as well – except at one point it got out of hand for her.
 
I read an article recently that stated that the next highest risk group for anorexia other than young girls are senior women. And anorexia killed Sister Margaret. So now my mom’s other sister, Sister Teresita, is in the process of losing another sister all within one year. I have been keeping in close contact with her, so she has ridden on the roller coaster along with me. Friday my mom was so out of it I wasn’t sure if she would last until her sister arrives this coming Thursday. So on Saturday when mom was so lucid, I got Sister Teresita on the phone so that she could talk to her while she was lucid. She told me she really appreciated that.
 
So all is going along as well as can be expected when I call my mom last night. The first thing I am greeted with is "Jan, what the hell is going on here. They are not feeding me, they won’t take me to the bathroom – they even woke me up at one in the morning (and it was only seven at night).
 
The nurse was in the room with her so I spoke to her. The nurse said that she was getting agitated (something very common with the spread of cancer, especially if it is spreading to the brain) and that they were going to help her go to the bathroom and give her something to calm her down.
 
I called my mom a few minutes later and she did confirm that they took her to the bathroom but that they literally had to carry her back to the bed because her legs were not working. My mom’s take on that was, if they let her get out of bed and use her legs, they would work. The problem is that this is probably a result of the cancer spreading to her brain and that ultimately affecting her legs.
 
I spoke to the nurse this morning. She said my mom was agitated for a while but then calmed down. My mom wants me to get them to put a catheter back in for her – but the doctor is hesitant as she can, when she goes into one of these episodes, pull it out like she did the other day and that is not safe for her to have that inserted and taken out on a regular basis.
 
The sad thing was that at one point my mom said to me "Are you on my side or their side". The cruel part of all of this is that you get periods when the person is lucid and then periods where they are not, but there are also periods where they slip in and out – and that is the toughest. One minute they are there, and then they combine it with delusion – and consequently you do not know what to believe and you begin to wonder if they are telling the truth and the others are lying to you.
 
I have spent enough time there to be very comfortable with the care they are giving my mother. Also, when her sister comes this week, she will be spending a lot of time there – so she will be able to see if anything is awry.
 
My mom said something to me yesterday that makes me feel that she is frightened about death. She asked me about her decision not to recessitate.(spelling?) – She asked me if she changes her mind and wants to be recessitated, would that affect the type of care she had. I told her that her health care decisions were hers and that I would only make them when and if she ever becomes unable to make them. I also told her that her care would be consistent no matter what she decides. I then asked her what she was afraid of – and she told me that she was afraid that people were closing the lid on her. I had that conversation with her yesterday afternoon – and she repeated that she did not want the lid closed on her again in her agitated state last night.
 
I am going to let the hospice social worker know about this. It seems that my mom is fearing that we are giving up on her life, and nothing could be farther from the truth. I think she needs to have that reinforced as we move forward.
 
So, I called her again this morning and low and behold, everything is fine – she ate breakfast and she was tired and wanted to sleep. So I told her I would call her at dinner time (I have a lot to do today and will not get a chance to get out there – plus I am going back to work tomorrow after being off for a month and I will not be able to be there for as much time as I have been)  and we’ll see what happens then.
 
As you can see, this has been up, down, up, down, up, down. It is very tiring emotionally and the only comfort that I have is that, in my heart, I feel I am doing all that I can and the best that I can for her.
 
I think all of us, at some point in time in our lives, will be faced with this. Hopefully we can all learn from our experiences and help each other out while we are going through them. That is all we can do.

Terminal Agitation

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Yesterday was a very emotional day. I called my mom in the morning and although she did know who I was, I could tell that she was hallucinating more than not. A short time later, the hospice nurse called me and said that mom was experiencing terminal agitation. She pulled out her catheter and was very anxious, grabbing at things that were not there and talking to people in her past.
When I asked the nurse to define terminal agitation, she said that this was part of the dying process and very common for people to go through. No one can predict when things will happen – and she could rebound again, as she has in the past. It is just such a roller coaster ride to go through this.
I told a close friend of mine, Kathy Hodgson, yesterday that I was just so tired of crying. My eyes hurt all the time and I am always tired, but when I lay down to sleep I can’t.  I am a little taken aback at how deeply this has affected me. I knew I always loved my mom, but I guess I never realized to what extent. I look like her – I have a lot of her characteristics. And I feel like I am losing the one person who probably knows me better – inside and out  – from anyone else. This is my last experience with unconditional love, and losing that is hard.
When I went to see her yesterday, at first she knew who I was. Then as time went on and I would ask her who I was, she would call me by various names – some I did not even recognize. But, I knew she knew I was there. The nurse finally gave her something to calm her down and she slept. I just sat in the chair next to her bed and stayed with her for a while. Then I kissed her and left.
This morning, the nurse said that mom had a restful night – but I am not sure how lucid she will be today. I am going over to her apartment to do some light cleaning up before her sister arrives on Thursday. I hope mom hangs on until then, but I did tell her yesterday that if she needs to go, that I will be ok and that I will handle everything.
I go back t work next week, and even though I am looking forward to it, it bothers me that I will not be spending as much time with her. It’s true, there is not much I can do for her now, but I do not want her to think I am abandoning her. I know somewhere deep within her, she knows that.
The people at the nursing facility are amazed at how many visitors that she has been having and much she is loved. They told me it is refreshing to see that someone is admitted and not just forgotten about. I really admire the people who work there – what they do on a day-to-day basis is incredible. And it is interesting, there are very few men who are doing this kind of work – it is such hard work and the pay is not that great – but it is such important work. It is a shame these caregivers are not being compensated more for what they do.
Bob’s visit went without a hitch. I was afraid that maybe after he visited that she might go into a decline. We’ll see what the next few days bring.

Hospice

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Yesterday I signed my mother up for Hospice. That is a very scary thing, as Hospice is equated with eminent death, and in reality part of that is true and part is not. Hospice is a program, not a place and what Hospice professionals due is deal with the physical, emotional and spiritual needs of a person who is facing the fact that, due to a medical diagnosis, they in all probability will die – most likely within six months or less.
 
I felt compelled to bring Hospice in after what happened this weekend with my mother’s medication going out of wack and with her being dilusionary and hallucinating. Hospice professionals are dedicated to providing as much quality of life and managing pain in these types of situations. I wanted to make sure we had the best dealing with my mother’s situation at this point in time.
 
What Hospice does is allow natural death with comfort support. The goals of Hospice are not curative – the program is comfort care oriented and emphasizes the alleviation of symptoms and promotion of quality of life. At this point, I feel this is all that I can do for my mom.
 
I wasn’t sure how I would feel about this – but I found that I was ok with it. I want to make sure that my mom has quality of life and dignity as we face this – and now I have made sure that that will occur.
 
Mom is much more lucid which I am so happy about. That medication imbalance really caused crazy things to occur. In a way, it was a blessing in disguise, because faced with the fact that I may have had the last lucid conversation with my mother and then seeing that I have not – it has made me much more tolerant and much more grateful for what we have left.
 
On another note, my brother is coming into town today. My brother and my parents have/had a love-hate relationship for many years. As for me, I have estranged from him for many years – yet I felt he needed to know what was happening to mom and make his decisions from there.
 
He is speaking like he wants to reconcile with me, and I am not sure about that. There have been many things that have occurred during the years that were not talked about and need to be resolved. I am not sure that this is the time or the place, but I also do not want to move forward without some recognition of the issues that caused the situation and how things are going to changed.
 
My close friend Kathy says I need to think about the concept of forgiveness – and I am willing to entertain that. But I also know that not dealing with past issues and sweeping them under the carpet only puts them in a place where they will resurface during the next inevitabel conflict. So I need to resolve for myself how that will work for me. I am glad that he is seeing her. It will be interesting to see how she treats him.
 
Anyway, despite everything, yesterday was a pretty decent day. My concept of normalcy has changed since all of this happened, but I think my "new normal" was yesterday – and I was very grateful for some normal in my life again.

Seeing mom today

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 Today my mom was so much better. She was coherent and almost back to being herself. In talking to the staff at the nursing facility, it seems that my mom had an unusually high level of digoxin (heart medication – mom was diagnosed with congestive heart failure in March) in her blood. According to the staff, that could have been the cause of her being so delusionary over the weekend.
 
It was pretty scary to see mom that way. She had this very blank, far away look in her eyes. She was seeing things that were not there, pulling at things in the air, talking to people that were not there. She even tried to get out of bed to turn the tv on – and the nurses found her on the floor. When I told her about that today, she had no memory of it.
 
It is so hard to know what to do for her. The doctors say that she hads 2-6 months to live, and so it is hard to know if these episodes, when they occur, are caused by the medication or by the cancer progressing. It is so important for people in these situations to have someone advocate for them. Although the doctors and nurses try to do there best, communication can get miscontrued and you need someone who is on top of things all the time.
 
I have off of work for 3 weeks now and I am anxious to get back – if just to have some time that I am concentrating on something else other than sickness, medication, death, etc. This experience has been very hard for me, and it has given me a new appreciation for the protected life I had for such a long time. We will all be faced with this at some point in our lives, and this is very difficult and gut wrenching when you are making decisions for someone who is so important in your life. I know my mom knows that I am doing my best – but you feel like your in Las Vegas playing the odds of when someone will live and when they will die and what is the best thing to do for them at the particular stage they are in.
 
Everything I have read about small cell lung cancer, which is what my mom has, is not pretty. Chemotherapy is the preferred treatment, and even in the best of all situations, the prognosis is no longer than 5 years. Without chemo (and the doctors do not recommend this for my mom as her lungs are so scarred from 60 years of smoking) the prognosis is less than one year in the best of circumstances.
 
Every time I see someone with a cigarette in their hand, I want to rip it out of their hand and have them see what my mom is going through. Her cancer is most typically caused by smoking. And the deadly part about it is that it generally is not detected until it has spread and caused some other type of complication. In my mom’s case, it was a tumor that pressed on her spine and caused a compression fracture of her vertebrae (bone resting on bone). The pain progressed until it was unbearable and then she was hospitalized and diagnosed.
 
It is very therapeutic to journal this journey. I will continue to so do on a daily basis.

My life these days

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My life these days has been very crazy – especially dealing with my mom’s health issues. From today – July 3, 2006, on – I will journal this situation along with my thoughts and emotions as this has been one of the most difficult challenges I have had to face in my life.

 

More soon!

 

  Me