Sunday, August 23, 2009


Another month has gone by. Wow! Summer is over.

I've been invited today for a delicious meal, the best company and friendship. Being around people you are comfortable with and who understand you are what it is all about. Being relaxed. Can't wait!

Still dealing with loose ends concerning mom's estate. The basement is acceptable. I'm still holding too much stuff belonging to my mom, but it is much better!

Unbelievably, mom still gets more mail every day than I do. I've noticed that I've been missing her and remembering the good times now more that the constant assault of things to do and worry are gone. The pain and anger of the last year or two is starting to fade a little and I'm able to let some of the grief run its course. Not enough yet though. I can literally still feel the lump of worry in my throat. I wish I could be more like my brother, laissez-faire. Alas, I can not. My blood pressure is still up despite medication.

School starts next week. Back at it. I am looking forward to the routine and the kids. I've missed them. What's wrong with me? ;> What I won't miss is the alarm and the early rising. Five am is brutal, especially as the days continue to get shorter and the darkness makes getting out of bed impossible.

Off to shower and have some fun. Fun! It is about time...

Saturday, August 15, 2009


I've been able to manage much of mom's possessions. The box count is down. I still am holding way too much. I donated quite a bit to charity, but I'm finding difficulty, for some reason, in letting go of more. I tried to hold a small rummage sale, but those don't really disperse things the way they should. You really need the right clientele to show up. I know I need to get rid of more.

Friday, July 24, 2009


Mom passed away the beginning of May. I haven't been able to update. Not sure how I feel. Although, I do miss her terribly at times, there is a lot of relief that she isn't suffering anymore and no one is asking me to do impossible tasks. I cringed every time my phone rang and the mail was delivered. It had been quite a ride. I was beginning to get totally exhausted and unsure of how much longer I could last.

It was so easy to become angry with the system. It is so out of whack and the care is atrocious. Now, I see that much of my anger was fear... fear of being out of control and not being able to take care of her.

I was very lucky she wound up in Kenosha. She happened upon a wonderful compassionate doctor who eased my burden by showing me that even professionals struggle with the same end of life decisions I needed to make. He called me every evening the week we discontinued heroic measures. It seems strange that with all the time I spent there, I never met him in person; however, I know that he was a good human and chose the right profession.

Dealing with her personal belongings is my summer task. I can only do so much, and then it becomes personal, and unfortunately, overwhelming. I remember this from when my dad died.

Take a look around at all the crap and mementos you have accumulated and wonder what someone else will do with them.... It is sad.... but stuff is just stuff.

I'm doing ok though. Life does go on. You are a conglomerate of your life experiences. I have a wonderful group of friends who keep me busy and laughing.

Thursday, April 2, 2009


Trying to be more reactive than proactive lately. Trying to stay calm when I feel like screaming. Every time I intervene, things become more contorted and confused. Dealing with institutions is insane. They roll in their own fashion.

Alas, the craziness continues. The medicaid qualification (so that the state pays costs) that I busted my butt and stressed over collecting the paperwork, dispursing assets and working so damn hard to get, ended-- when I sold her house. The money from the house became an asset according to the state. We knew that would happen, keeping it was costing too much in taxes, utilities, etc. Renting it out made it an asset too. You get screwed no matter what you do.....

So, now I'm not sure how much the bills are mounting up, who is paying for what, what is happening. The new nursing home doesn't seem to even be aware that she is self pay again... hmmm.... or is she? Is medicare covering her again? Sure wish I knew that..... before I get a bill for $20,000.00 in the mail.

We still don't know whether she was ever evaluated and deemed mentally incompetent, like the doctors agreed they would do when she was just in the hospital. Believe me, she is not capable of making her own decisions. No one seems to know if the medical power of attorney is enacted and is now in my hands or not. We don't even really know what that all means. We hope there are no negative ramifications!

Not sure how anything really works at the new place, how doctor's appointments are handled, who her primary nurse contact is, who anyone is. The social worker handles over 100 patients and seems to have more on her plate than she can handle.

I've been asked to make decisions that I don't know enough about, like is hospice is the right move at this point? The doctors said yes, then the home cancelled the orders... Hospice does not employ physical therapy and some medications which I feel are still beneficial. I received a call stating physical therapy made a decision to not treat her, although I am informed when I visit that she is still a participant.

I don't know how much she is eating, what medications she is on, what her days are like.... it is frightening.

While the new nursing home seems to be taking better care of her (cleanliness, treating her with more kindness, etc) than the last, the communication issue and the distance I must travel to get there (no longer a stop on the way home from work) are huge downfalls.

I asked today if there is a pamphlet, some form of instructions, procedures. I was told they don't have it? So, still in the dark, despite attempts to gain information. Maddening. A care plan meeting was held this week without anyone notifying the family; a note was stuck to her bulletin board but we didn't see it in time. My brother is supposed to be calling to get a meeting with someone who can answer some of these questions.

I'm concerned they are using a heavier hand with pain medication than what is in her best interest. She seems totally out of it at times and on one visit, began yelling out for help like a child, stating that is the only way they will come (not true) She didn't seem to have a grasp on reality and how to ring the bell for assistance. Why the change? Is she too medicated? Not enough oxygen? Blood chemistry gone awry? Who knows????

I'm not sure if she knows that I have been around. It is HARD to stay around. When she is awake, it is disheartening to hear her being so unhappy and dillusional. It is also pretty depressing and solitary to sit there in a silent room while she sleeps and gasps for air.

Tuesday, March 17, 2009


Tomorrow will be 2 weeks in the hospital. Medicare/Medicaid is getting restless. They will be releasing her to anywhere who will take her tomorrow. It isn't about your health people, it is all about money. Face it. We are talking hospice at this point, maybe..that is if the money falls into place. No kidding. Not sure where that will put her and what the total implications of that are at this point.

She was originally admitted for edema. She was up 40 pounds of water weight. Pretty hard on the heart. Since her admittance, she has gained an additional 20 pounds. They identified the bacteria that caused her coughing, which we thought was pneumonia. It is MRSA, antibiotic resistant staff. Mean shit. She contracted it while in the nursing home. Wait, can't say that, they won't admit that. They would have to report that and that makes them look bad.... This bacteria can and does kill healthy people. How can she keep fighting this with such a bad heart? The human will to live is amazing. She is amazing...

The nursing home, (I'll say it)... where she caught this bug, now refuses to take her back. She can go to Kenosha (a tiring daily trek) or way out by Burlington where her elderly friends can not drive to often, and I don't have the time each day to visit while working a full day.

There is no humanity. There really isn't much caring. I'll repeat. It is all money. Yes, I am bitter once again. It is hard not to be.

I'll know more tomorrow. More meetings... more inhumanity.

Wednesday, March 11, 2009


Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light.
Though wise men at their end know dark is right, Because their words had forked no lightning they Do not go gentle into that good night.... Dylan Thomas

I've been thinking about this poem a lot today. How do you tell someone that their words have forked lightening and maybe it is ok to go gentle into that good night?

Is it really your place to do that? Is it more humane? Dying ends all the suffering. I guess that is a choice we all have to make. You come in really alone, and you go out alone... even though you might be surrounded by those who love you.

The hospital called me yesterday to bring in my power of attorney paperwork. They were pretty sure mom was at her last moment. They goofed though, and called my home number while I was at work. By the time I got the message... it could have been too late. She persists. She keeps fighting. The human will to live is very strong.

I just got all her financial things in order, sold the house, got the medicaid certification. While it was a huge chore and made my brain hurt at times, those things seem pretty small now.

I know I've been there for her. Does sitting next to someone while they die really help them? I did it with my dad. It never leaves you. I don't know that I have the strength to do it again.

Oh yea, it is my birthday. Please don't wish me a happy one.

Sunday, February 15, 2009


Middle of February and lots of stuff still brewing. Not sure where to begin. I would think by now, I would be much smarter and know how things work. Doesn't appear to be the case.

I may have sold her house. We are just waiting on an FHA inspection. It surprises me that I could empty it out, selling her and my deceased fathers possessions, put the house up for sale and never show proof that I had the legal right to do so. Just this last week, 3 weeks after accepting the offer, did anyone ask for a legal copy of my power of attorney. I must have an honest face, or they are very trusting.

I am hoping that the closing goes as planned and that monkey is off my back. The state doesn't allow her to use social security to pay for taxes, minimal utility bills, home owners insurance and snow removal on property she still owns. What she gets, goes directly to the nursing home. That means someone (me) has to "loan" her money until the house sells. More paperwork to document the loans, more pain in the tush. (I'm trying to be nice there) Once the property sells, she can pay me back.

We did another stint in the ER and ICU this month. Her health still is very fragile. She is mentally better since her release. The added units of blood have pumped more oxygen to her brain. That is good news..... and bad. She believes she is able to live independently again, which clearly, she is not. She goes on and on like a child about it; however, her physical capabilities still are totally limiting. I can't blame her for wanting out. It is an awful place to live. We have not told her that her doctors say it is a permanent placement. She would give up. The staff, however, are not as kind. They tell her things they have no right to tell her. Some assistant therapist told her that her apartment was rented out. That is their business.... how?

There was a fight about bed holds while she was in the hospital. ($300 per day out of your pocket) Technically, Medicaid should have paid them... once they set a date of approval, it would happen. They forced me to guarantee it. I wouldn't do it. They packed her crap.... literally threw it in boxes and put it outside in a shed. Her eyeglasses were thrown into a box with her phone and other things that could have easily been damaged. Her clothing was not folded, just dumped. Their disregard for her and her possessions totally pissed me off.... I brought it up at one of the care meetings and they were mad at me for mentioning it.

Still no word from the state if they accepted all the paperwork I meticulously provided. We still have no official word on medicaid approval or a date. The system works at its own pace. They aren't concerned about the bills that arrive every day in the mail. They make me very nervous. We don't know if Medicare should be paying those bills or if Medicaid really should be. To someone who always pays their bills on time, it is very hard to see them pile up, knowing there is no more money left to pay them.

The average nursing home bill has been between $7,500.00 and $10,000.00 per month, including medication costs... and her private insurance is still covering the major part of the medication cost. Take your average nest egg and figure out how long you would be able to last. It doesn't take a genius to see that most everyone in nursing care is on medicaid. The unreasonable cost forces you to become part of the system.

We have an upcoming doctor appointment. I hope he is more honest with her this time. He is a master avoider. My fear is that he will buy into her pleas and say she can try assisted living again. I can't really believe that would happen; my brother says it won't. I don't trust anyone's good judgment anymore. They have failed over and over again in making good decisions.

Thursday, January 1, 2009

2009 Has to be Easier!

I've had time to digest. My take on it all is a little more in perspective. I'm still offended at the lawyer's fees, don't get me wrong, but I can see that the end result is what really matters.

This past year has been a growing experience. With growing, comes growing pains.

I felt huge emotional pains, watching my mom suffer painfully: physically, mentally and, yes, emotionally. I can't imagine the loss of dignity of being in a nursing home, confined to a wheelchair, in diapers, having someone spoon feed you, when your brain is telling you that you are well enough to be independent. (she definitely was, and still is, not!)

It hurt tremendously to have to move her possessions from her independent living apartment without her knowledge. (We couldn't let on, the ensuing depression would have made her give up, she was too ill to handle that grave injustice)

As the only child in town, I became her support. I became the financial power of attorney, the medical power of attorney, the advocate between her and her care givers, the one to do the arranging of transportation, the one to shuttle back and forth between the doctors, the hospitals.... At times, I felt there was a phone constantly in my ear. When the phone rings or the mail comes, I cringe. Ya, me, who doesn't even balance my checkbook because I truly hate money and dealing with that sort of thing.

The messy state of her affairs... Where do I begin? She had been very ill for many years; it was monumental. It wasn't just filing papers... I learned about: insurance, home owners, medicare, and personal secondary medical insurance; selling a house; estate sales; selling stock; reclaiming property that has been transferred to the state; liquidating assets; property tax; prearranging funerals; probate; death tax; dealing with financial planners; sheltering assets; annuities; elder care attorneys....the list goes on and on. Each one more insulting to your intelligence because the elderly get bashed financially on all ends. BUT the most fun???? Medicaid law.

Wait a minute... let me amend that. Maybe the most tolling thing was the well meaning, evil spirited phone calls and digs from her friends and tertiary relatives who didn't think I was doing enough or doing right by her... Where was their help??

So, every day, I had a huge to-do list because the time clock was ticking; the law changed as of today, January 1, 2009. As of today, the law is way less favorable if you haven't pre-planned.

So on top of all this BS paperwork, trying to get people to do their jobs right when you contact them, reading and learning, and oh yea, my job, my responsibilities and my still needs to eat, sleep (not much), shower, do laundry and buy groceries (did I mention some major surgery?)... I visit every other day or so, and somehow find a way to put a smile on my face, be upbeat and find cheery conversation.

I learned that it might be ok to die. It has changed my outlook on the final frontier. I hope I go fast. I hope medicine doesn't prolong my life to the point that I can no longer take care of myself. I also learned that the tough part is being the one who has to "clean up" after someone else dies.

I will probably learn more in 2009. The saga, I know, is far from over. The house is not yet sold. I just read an article that said there were only 13 homes that sold in December in Racine. Some of them sold for well less than half of their assessed value.

I may end up buying real estate that I don't even want, just to save it from the wolves. (we have 45 days to sell it or it becomes fodder for the state to seize upon her death) That doesn't even take into consideration the insurance, property taxes, upkeep, heat.... see the fun, see why sleep is elusive?

The emotional pain will be huge when she finally does pass on. I will really be a grown up then and will miss her terribly... I already do on days her mental
capabilities take her away.