CP Diary - Updates for www.ideservealife.org

We have moved!

2006-02-26T06:46:20Z

Our blog has moved! We can now be found here at blogspot. There are several new posts from this week, so come visit us there, and please update your bookmarks.

Thank-you

todaywithdonna.blogspot.com

cabin fever

2006-02-19T05:50:45Z

It was cold and blustery today...not much to do but stay indoors. We wanted to go to Dunkin Donuts for some hot coffee, but Donna was so cold we only made it as far as the hospital cafeteria. Their coffee is so awful that Donna decided to settle for hot cocoa. I had half coffee...half hot chocolate. I read the paper while Donna watched a little TV. We've got to get that lift fixed soon!

accessibility (updated)

2006-02-15T04:07:33Z

It snowed on Sunday the 12th of Feb. Today, Valentine's Day, there was still snow and ice piled up on every curb cut in town...left there when the snow plows went by on Sun. Donna had to drive her wheelchair in the road, and when we wanted to go on the sidewalk so we could go to Dunkin Donuts, I had to remove as much snow as possible with my foot, and then push her chair with all my strength or she would have been stuck there at the curb with her wheels spinning, going nowhere. This is two days after a snow of about four or five inches! She was very angry to say the least. What if she was alone? She would have had to turn around and go home...another day wasted like so many before. I can understand now why she had so much anger when I first met her. These kind of incidents happend probably several times a week...for most of her adult life. To add insult to injury, when she tried to go to the gift store at the hospital where we went to do her banking, she couldn't get in. The entrance was too narrow with all the Valentine's Day displays blocking the way for her wheelchair to get by. Isn't this illegal? We were both understandably very p.o.'d!

Take charge Donna

2006-02-03T05:43:55Z

It's fantastic to see that Donna is finally taking an active role in her care. For a good part of her life she was in institutional and semi-institutional settings where she had very little control over her life and very little say in directing her care. She has her own home health aids now, and she is allowed to direct her own care...an idea that, until recently, was new to her. I read a social worker's evaluation of her that she had saved from some 20 some odd years ago, and they concluded that Donna was not ready for independent living at that time. Well, how could she have been!!! She was never really taught how to be in charge of her own day to day living. Plus she was so drugged up that she could not even think straight. (I discussed the mis-management of her seizure medications by her doctor in another post many months back if you are interested). She was encouraged to be a 'good client', to not make waves or challenge authority. No one ever gave her a chance. Many, many times we complained to her doctor and her nurses that she was tired all the time. They never even acknowledged that several of her prescription medications were causing that problem. I'm not even sure they even made the connection. Well, it's taken Donna a while to get used to directing her own life, but since I started encouraging her to take charge of her own life, she has been getting better and better at it! I'm very proud of her, and she's rightfully very proud of herself.

van lift

2006-01-25T06:12:25Z

We're still searching for a used lift for Donna's van. Her social worker has tried to get financial aide to help with the expense, but she has come up empty handed. Sometimes I wonder how much we as a society are willing to invest in people like Donna. I know we spend a lot of tax dollars just to cover their basic needs, but "man does not live by bread alone." When you love someone who is disabled like Donna is, you naturally want the best for them. Unfortunately, those of us who pay the taxes which pay for her services don't always have as strong a commitment to their well being as their loved ones do. A few extra dollars a year in taxes from all the middle and upper class taxpayers would make a world of difference to people like Donna. Why can't we find it in our hearts to give just a little more! Is it a matter of being totally self-centered, I wonder...not giving a damn about anyone who is suffering? "It's not my problem", many of us probably think. I wish I knew the answer.

jaz49 @ 2006-01-12T00:31:00

2006-01-12T05:29:02Z

I'm testing two new banners for my music websites. I hope you get a chance to visit one or both of them. You can listen for free. If you like any of the songs, please spread the word. Any CD sales will go to help Donna get her van lift fixed.

Battle of the bands

2006-01-08T06:43:07Z

I was in a Battle of the Bands last night at ProjectOverseerProductions on the web. I didn't win, but got a lot of very positive feedback from many of the people listening. The song I entered is the first one on this page here. I don't have the time to play in a band because I'm busy with Donna, but I enjoy being a band in cyberspace.

No bus trips...cabin fever arrives

2006-01-03T05:15:57Z

I called Access Link(NJ Transit) twice today and could not get any trips for Donna for this week...not even a trip to go to the market to do her grocery shopping. I think there's only one bus available during the time frame she needs, and someone else has it reserved on weekdays. It certainly doesn't seem fair. Well, tomorrow I'll try and get her a ride for the weekend. Sat. and Sun. are usually available if you call early in the week. The weather was horrible today, and it's expected to be worse tomorrow, so Donna will be stuck at home...NO TRANSPORTATION. The winters are horrible for the disabled here in New Jersey! No wonder so many get depressed.

Christmas

2005-12-25T05:55:51Z

A very Merry Christmas to all of you who have been following Donna's story! And a Happy Hannukah to our Jewish friends! There are so many who are lonely and suffering. Let's keep the spirit of Christmas in our hearts throughout the WHOLE YEAR!

New Photos

2005-12-21T00:42:21Z

New photos have been added to our online photo album here.

Humanity's potential

2005-12-21T00:39:56Z

Donna's new morning aide is doing such a great job! It's such a huge relief and a pleasure to see how well she takes care of Donna. She treats her like she's her own daughter. What a change from some of the other aides we had caring for Donna...like day and night. There's such a great potential in human beings for us to treat each other with kindness and compassion. I often wonder where we went wrong. So many of us don't seem to have a speck of either.

A chance to help Donna

2005-12-15T06:35:50Z

I've been recording an album of original music for the past year or so, and we finally have the album for sale. You can check it out if you'd like here. All proceeds from the sales will go to help Donna get a new wheelchair lift for her van. She desparately needs one as you probably know if you have been following her story here on the blog! So you can help Donna and enjoy some great music(or so I've been told) as well. I have received some great reviews of the music at SoundClick.com and at ProjectOverseer Productions. It's called "The Ghetto" by the way, and we are known as LeJaz(the band name).

jaz49 @ 2005-12-06T21:48:00

2005-12-07T02:49:23Z

I've been absent from the Blog for a couple of weeks because of illness. Donna's hip is on the mend, but she bit her tongue a couple of weeks ago, and it has been unbearably painful for her...especially eating...and even talking. I hope things will be back to normal soon. I hate to see her suffer so much.

Pain again

2005-11-23T06:01:02Z

We had another afternoon in the E.R. at the hospital today. Donna's hip pain was so bad she had to go just to get some pain medication. Believe me, it has to be really horrible before she will go there. We spent over 4 hours there, and today was not even a busy day. On a weekend you often have to wait over 6 hours before you are through. Anyway, they took another x-ray. She's got arthritis in what's left of the hip joint, which is not much. It was aggravated by her former morning aide who was not very careful getting her dressed and washed.

jaz49 @ 2005-11-17T22:08:00

2005-11-18T03:06:28Z

We got a new aide this week for Tues. and Thurs. mornings. We had to let one of our former morning aides go. She just couldn't do the job right. She was a very nice lady who we both liked a lot, but her job must have been way at the bottom of her list of priorities, because her mind was definitely elsewhere when she was at work; plus she was often chatting on her cell phone(against company regulations) instead of working. She used to chat on the phone while giving Donna a bed bath. Can you imagine!? She would hold the phone with one hand while washing Donna with the other. I was shocked when the new aide asked my permission before answering a call on her cell phone..."it's about my ride home. Is it O.K. if I pick it up?" she said. The other aide never once asked permission to answer her cell phone and chat away for as long as she wanted. Can you imagine someone doing this on any other job. She'd be out the door in a minute. But since there is no supervisor and they are alone on the job with the client, some of the aides think that they can get away with anything. She used to wash Donna with a soapy wash cloth and then just dry her off with a towel, not even bothering to rinse her off. I wonder if she washes her own face that way...I bet not. Anyway, the new aide is very nice, AND very competent. She changes the rinse water for washing Donna twice without Donna even asking her! She does twice the job that the old one did, and she's only been with us two days! There are some great people doing a very important and necessary job for very little pay. If the rich would only pay a bit more taxes, instead of getting tax cuts, the government could afford to pay these home health care workers a living wage instead of the $9 or $10 per hour they now get. Its a disgrace that they have to work for such ridiculously low wages, if you ask me!

Are we too stingy here in the U.S.?

2005-11-06T04:13:38Z

We've got two good aides who come for two hours in the AM to take care of Donna. One works Sat.-Mon. and the other Tues.-Fri. The Tues.-Fri. aide had a family emergency and had to take two weeks off. We had a substitute for only one of the days she was off. The agency couldn't find anyone to fill in the other 7 days! There's a shortage of qualified home health care workers. No one wants to do this kind of work for the low salary that they pay. If Donna didn't have me to take care of her for all those days, she would have been in big trouble. I also do the evening shift every day because the agency can't find anyone to work 6:00-8:00PM. If people with Donna's degree of disability don't have a loved one to help them out in emergencies, they have to be in an institution. They can't live alone in the community in their own apartment. That's a terrible shame! It's a reflection on our very uncaring government which won't provide sufficient funds so that the home health aides can be paid a living wage!!! How come Great Britain can manage to pay 20% higher salaries to their home health care workers? People like Donna get far better care over there as far as I can tell. What a terrible shame to provide such inadequate care to people like Donna!!! Should people who have so much to give be forced to live their whole lives in an institution? Would you want this for your own son or daughter?

I want a life!

2005-10-29T04:33:27Z

Donna's going to go far one day, not only because she really wants to, but finally, she really BELIEVES that she DESERVES to have a normal life. Six years ago, when I first met her, she was convinced she didn't belong, and would never have a normal life. Tonight, before she went to sleep, I told her how proud I was of her. She has made so much progress in her attitude...from frustration and anger to happiness and hopefullness. "I want to have a life!" she told me. "I want to have a life like you!" Finally, I think she really believes she has that right!!! Let us hope God is listening to her brave heart.

jaz49 @ 2005-10-16T01:23:00

2005-10-16T05:35:07Z

Friday we had another bad day with Access Link. It took 50 minutes for the bus to get us to a shopping mall less than 3 miles away. The bus had to first go to another mall to pick up two people there. We originally asked for a 2 o'clock pick-up, but could only get a 3:15 one...and I called tuesday, three days in advance of the trip. So we got to our destination at 4:08 and had to be ready for the return bus at 6:10. That left us very little time for lunch, a haircut for Donna, and shopping. If we were able to get the 2:00 bus we requested we would have had a much better time. It seems we have to plan every trip we want to make at least 4 days in advance. Doing anything on the spur of the moment is of course totally out of the question. Meeting someone for shopping or lunch is very difficult because the busses are so unreliable and inflexable. Plus some of the drivers are awful! They drive like total maniacs with people in wheelchairs on their bus. Where do they get these idiots?

Walk a mile in her shoes.

2005-09-29T04:20:23Z

Monday I was on the phone for 25 minutes just to book one trip for Donna for Thursday. The first 20 minutes all I heard was "you are currently on the reservation line. Please continue to hold for the next available agent." After all this waiting you can't always get a bus for the times you want to be picked up and return home. Imagine if every time you wanted to go out you had to plan a trip 3 or 4 days in advance; then if you have a speech disability, you have to find someone willing to spend 20 or more minutes on hold to make the call for you...not very likely in most instances; then on the day when you finally get to go out, the bus comes an hour or more late and you lose an hour of your shopping(or whatever) time. Imagine this happening to yourself for every trip you want to make during the week. I know people who complain when they have to wait 20 minutes for a cab! Imagine waiting 3 or more DAYS to go out on an errand or meet with a friend. Many people like Donna get depressed by all this, and give up on life. We've seen it happen to all too many people. As Donna always says of the average able-bodied person, "they don't care, because it's not them. They never put themselves in my shoes." So true!

Left out in the Cold

2005-09-01T00:35:35Z

Well, it was another day stuck here in Long Branch with Donna, thanks to the shortage of busses for the disabled and the broken van lift. The van drives OK, so I could go out without Donna, but I never do that. She's been left out all of her life, so I don't like to go out and leave her here alone. Even if it means staying here in town being bored, I won't go out and leave her alone. When I'm invited to go places with friends or family, I tell them, "if Donna can't go, I'm not going." When I had a car and Donna could no longer get in the front seat because of her hip pain, I chose to stay here in town with her, even on my days off when I would have much preferred to be going somewhere more exiting/interesting. I never knew how isolated and cut off from the world many disabled people feel until I lived "in their shoes", so to speak. Most of my life I had access to a car and came and went as I pleased. Donna and others like her have never had that experience. When the lift was working on the van, Donna got to live like most of the rest of us do, and she LOVED it. We are both so frustrated now with this problem we are having with the van. I hope to finish making my CD soon (visit www.soundclick.com/lejaz for a sample of the music) and maybe I will be able to sell a few copies to make some money for the van lift. Who knows...I suppose anything's possible, if God wants it to be.

Off topic post

2005-08-31T03:56:42Z

I know this is off topic, but I want to post it anyway, because it is an important issue to me. I normally discuss Donna and her struggle to have a decent quality of life, but somehow I think this might be tangentially related, since it relates to the economy; and aid for people like Donna comes from tax revenue, which is an economic issue. Here is the post I got off the web. It was written by Rep. Jim McDermott:

One Nation – Two Countries (12 comments )

The President, rested after five weeks of paid vacation, returns to the White House with new data showing so much is up under his Administration.

Gasoline prices are up, dramatically. Oil Company profits are up, obscenely.
And Americans know the sky is the limit in other important economic indicators as well. Bankruptcies are up. Poverty is up. And the number of uninsured Americans is way up.

The President is proud of the state of the nation. He says so time and time, in one scripted, invitation-only, stage-managed event after another. The last time he saw an average American was when his motorcade whizzed by Cindy Sheehan on the side of a Texas road without stopping. But there was no time to stop and talk because there was another fundraiser to attend.

Every year for the last four years, the Administration has shredded the hopes and aspirations of average Americans while it printed money for Republican benefactors.

New census data recount a grim story for ordinary Americans over the last four years under this President and Republican majority.

Poverty climbed to 12.7% under President George W. Bush. That’s one out of every nine Americans.

The number of Americans who work but live in poverty increased by half a million on The President’s watch. So much for all those good jobs he claims.

Americans without health insurance soared 5 million to over 45 million.

With so much up under this President, is there anything down? Well, yes. Real median income among the working-age population has fallen.

The percentage of people with employer based health care has dropped to a level last seen in 1933.

The federal minimum wage stands at 69% of poverty, the lowest point in the last half century.

And, last but not least, real family income for those in the lowest bracket went down 5% while the top bracket enjoyed a 40% increase.

Put simply, the rich are getting a lot richer under this President and the other 80% of America is getting gouged at the pump.

The President is turning America into a two country nation, one where the rich can afford $3 a gallon gas because they own the pump, and one where the vast majority of Americans can’t work enough hours or enough jobs to make ends meet.

The middle class existed in the year 2000. If this President has his way, we will witness the fastest extinction in history of an entire economic class.

Access Link you stink

2005-08-30T04:04:17Z

I called this afternoon to book a shopping trip for Donna and I for Wednesday, two days away. Today is Monday(actually since it's just past midnight, it's officially Tuesday). I called two days in advance of our desired trip, and still could not get a bus for the time frame Donna needed. We really miss not having the use of the van. It's going to be a real hardship for Donna this winter if we can't get the lift replaced. The van itself runs fine, but the lift is still broken and we can't afford a new one. If anyone knows any place that might help us get a second hand lift please, please get in touch! We need one desperately.

jaz49 @ 2005-08-29T23:15:00

2005-08-30T03:53:11Z

Donna lost her good friend Diana this past Saturday, and it has been a very hard couple of days for her. Diana had a rough time of it in her 40 years on this earth. She had a total disability...she had almost no muscular control at all, and was totally dependent on others her whole life. Her Cerebral Palsy was so severe since birth that she could do absolutely nothing for herself. Donna really loved her a lot, and the feeling was mutual...it was a joy to see them together. Donna fed her every day when they were young and at school and when they went to the day program together as adults. We send our deepest symphathy to her family. She will be greatly missed.

Access Link

2005-08-05T04:24:48Z

Boy, "you never know how much you've got until it's gone", as Bob Dylan sang in one of his songs. We were really spoiled these past two years having our own wheelchair accessable van. We actually got to live like most of the rest of the people in the world...at least like most people in North America and Europe anyway. We could come and go as we pleased, like people who drive cars or who live in a big city with decent public transit. This was such an incredible thing for someone like Donna who stayed home alone and "stared at the walls" on so many long lonely days in the past. Or else she went out alone in the rain and the freezing cold in her wheelchair to the local Rite Aide pharmacy. That was the highlight of her days back then! It was pathetic the way she used to live. I feel like crying when I think about her life a few years back. Then finally our wish came true, and we found an old van that we could afford. Now the lift is broken and we can't afford a new or even a second hand lift.(see the post below about the lift problem) So today we went out on Access Link, the bus service for people who are too severely disabled to ride the public busses. I was able to ride with her as her companion to help with the grocery shopping. Two days ago I booked a trip for today to go shopping at a supermarket 5 miles from Donna's apartment. Well, we were on the bus for one hour and twenty five minutes...for a trip to the supermarket in a neighboring town!!! If you add on the twenty minutes waiting for the bus to arrive, that makes almost two hours it took for a 5 mile trip! I could have driven all the way to Manhattan, 55 miles away, in the time it took for us to get to that g-damned supermarket. After the bus picked up Donna we went to a shopping mall where we waited a while to pick up another woman in a wheelchair. Then the bus took that passenger home and went to another mall, a small strip mall, to pick up another passenger. So by the time we arrived at our destination, we had been on the bus for one hour and twenty five minutes. And this is not an isolated incident. We have had similar experiences in the past. Put yourself in Donna's shoes for a minute. How would you like to live your whole life like that? I know people who complain about the taxi cab service in our area. They complain that they have to sometimes wait 20 minutes for a cab to arrive. How would they like it if they had to wait over an hour? They would be damned angry, I'm certain. Well, we have to raise some money to pay for a new lift somehow. I don't know how yet, but I don't want Donna living her whole life like this. One of her neighbors used to take Access Link to work. He worked mostly for tips, and he lost a lot of money because he was often very late getting to work. Then after working hard all day imagine waiting an hour or more for your bus to take you home. It's despicable the way the disabled get treated...like they don't really count, as Donna would say.

A welcome change

2005-08-05T03:22:22Z

Well things have finally turned themselves around as far as our situation with the home health aides. We now have three aides that Donna and I like a lot. For the longest time we only had the one weekend aide who Donna liked. During the week we suffered with one bad aide after another. And whenever we got someone who Donna liked, they left for one reason or another...often to get a better job, go back to school, or because of an accident or car problems or some other reason. What a relief! Finally I can relax knowing Donna is well taken care of two hours in the AM and two hours in the PM. Unfortunately the PM aide will be going to back to college in the fall and will be leaving us. The AM aide will eventually finish her nursing school and she will also leave us. Then we will have to begin the near impossible search all over again, for decent help for Donna at home.