There have been no new blogs or updates on my home page this week for a reason. I am about ready to explode. Once again, there was a screw up with the company that owns my Independent Living Villa, and the same thing that happened in November, happened again on Wednesday, in the middle of me writing my blog. My electricity was shut off, because the company has been paying my electric bill to the wrong account #. Of course, no one at the corporate office can figure out to which account the money went.
Sooooo, my mentally and physically disabled husband and I have been in a hotel ( paid for by the Villa company) since Wednesday afternoon. Their screw up is not what has me ready to pull my hair out of my head. It is Florida Power and Light. Because Florida does not have a law, as many States do, that the power cannot be shut off in a home with a disabled person, they arrogantly ignored any plea for help. They wouldn't wait until the bill was straightened out; they wouldn't talk to the Villa business manager; they wouldn't do anything as a good will gesture. The guy knocked on my door, told me it was my problem, and shut off the meter. They would not take the Villa company's Visa payment over the phone - they insisted on a check, which the company overnighted. When the Villa business manager called, FPL said they received the check, and the power would be on by 3:30 yesterday. NOT. When she called again, they said, by law, they have 24 hours from the time the check is received to restore power. Too bad. No attempt made to be at all accomodating.
All Wed. night, and all day yesterday, and this morning, Sid, as you can imagine, is obessessing on when he can go home. Every 15 minutes, he asks whose fault it is, when the power will be on, when we can return home. I am at my wit's end. At least today is a Day Care Day. I got him up early, and am dropping him off as soon as he is ready. Then I will deal with everything, as I have been.
I got so upset with him yesterday that I yelled at him. All afternoon, he complained about the air conditioning. It's too cold. I turned it up. It's too hot. I turned it down. It's too cold. I turned it up. It's too hot. I turned it down. All day and all night. Finally, I blew up. He got mad at ME. Then he cried. Said he doesn't want to upset me, but he doesn't realize what he is doing or saying. I know that, but I'm a teensy bit stressed.
As you can see, I have my laptop, which has the web design software installed on it, but I couldn't get it to work properly, so that is why there is no notice on the home page.
So sorry to read about what you've been going through, Joan. Hopefully things will get straightened out very soon and your Villa adminsitrator can figure out what happened so this doesn't ever happen again. This is just what you didn't need in your life right now. It's very troubling, though, to read about FPL's shutoff practice, attitude re payment by visa, and their 24 hour 'grace period' to turn the power back on. No way should they have simply shut off the meter as they did, nor taken their sweet time in turning the power back on. In your next life you can advocate for change in public utility practices!!
Joan, so sorry to hear about the power problem. That's all you and Sid need at this time. Does your local paper have a column like a " Troubleshooter" or "Watchdog" column? If so, this type of problem would be right up their alley. The guy that does our column knows where to go and who to talk to to take care of problems such as yours and make sure it doesn't happen again.
Maybe a letter to the local paper "Letters to the Editor" would bring the problem upfront and get someone or a group on the bandwagon to get the law changed. You were fortunate that the Villa paid for a hotel for you. A lot of seniors wouldn't have that option or the money to go someplace. A weather outage is one thing, but someone's stupidity is another.
i cant believe they wouldnt have to notify of shut off with a minimum amount of days notice. if the electric/gas or such elemental necessity is going to be shut off here, they have to send out a warning notice with a date on it, so you can pay or reply.! very odd. sorry joan it must be frenetic. hope you get it figured out and can move sid home soon.
I would think someone running for a local political office would be willing to take up a situation such as you have endured, Joan. Can't understand there not being an exception - what about the Americans with disabilities act? Guess that didn't apply. So sorry for any thing out of the ordinary for you and your LO and this is way over the top. I know you feel guilt for losing your patience with him but we all do this and folks on this board understand. At least you weren't paying for the hotel.
According to FPL, they HAVE been sending out notices, but since it's not my account, I didn't get them. The Villa company says they didn't get them. Who knows?
Two interesting things happened this morning. First, I dropped Sid off at DC; he greeted everyone and said,"Boy, am I glad to be here. You can't believe what I've been through." All I really heard was the "I'm glad to be here" part, and a lot of my stress left me.
The power was finally restored this morning, so I was checking out of the hotel. The girl at the desk knew about the power situation and yesterday she saw Sid, so she knows how physically disabled he is. I told her that he also had Alzheimer's Disease. She said - "OMG! He must be super stressed, because you can't take them out of their normal environment." She obviously has more than a passing knowledge of AD.
flo - I had to pay up front for the hotel. The Villa company will reimburse me.
So I'm home. When I settle down, the Villa company is going to hear from me; my State representative is going to hear from me about FPL and Florida's laws; and FPL is going to hear from me. But right now, I need to unpack and destress. I still have almost 3 hours before I have to pick up Sid. Yippee on that one.
Joan, your story is just another glaring example of how the world has lost it''s collective ^!$#(#G mind. It mirrors our LOs' loss. There are avenues for complaint, but more and more there are no common sense solutions. I'm beginning to think it's all by design. Hang in there tough. "They" can't defeat you, or your spirit, if you don't let them.
What I am most upset about is that Florida doesn't have a law that protects seniors and disabled people from being without power. If I find out that there is such law, when Florida Power and Light said there was NOT, there will be Hell to pay.
The second thing I am most upset about is - do you need a LAW to do the humane thing? FPL KNEW it was an elderly complex. They KNEW the Villa had a disabled person in it. They KNEW I was not responsible for the bill. They COULD have waited until the situation was resolved. They chose not to. That is what has me so hysterical. As Ed said, what ever happened to common sense? And may I add - common decency.
In the state of Michigan, where we live, there is a higher power over the utility companies. It is called the Michigan Public Service Commission. In the past I had to communicate with this Commission to resolve problems. Don't hesitate to look into the Florida state government for help. Good Luck.
So sorry for all your frustration and pain Joan. Common decency I think must be really rare, I wonder, has it always been this way or is it just the way the world is changing, colder, more uncaring and selfish.
I think that our society is becoming so 'compartmentalized' that common sense and compassion are being squeezed out. How many times have you been told by a robot to push button after button, to repeat you ID or SS number, to say 'yes' or 'no,' and on and on. You are yelling 'agent' into the phone, pounding 'O' and you get nowhere and no one to answer your question. I've had discussions with clerks that included my saying, "i know it's not your fault, you're saying what you've been told, but...."
In Hungary, at breakfast, some years ago, I asked for a cereal bowl for my young grandson. It never came so I took one from an empty table. Oh, that was a bad, bad thing. When I asked why I never got one when I asked, I was told 'it wasn't his job.' When I was a volunteer reading teacher at a continuation school and the classroom badly needed painting, I said that I had men who would paint and we could get it done, but I was told NO, the Unions would not allow that. More and more our jobs are at stake if we tread on someone else's space or do something outside of the rules. We even have to have 'Good Samaritan' laws to protect those who want to help and get sued for their intrusion.
In Joan's case--and Joan, I cannot express how I would have felt in your shoes--and I can't know all the details, but I think it's the Villa's fault in that they should be responsible if they are making mistakes when paying the bills and they surely know they have medical problems in their units. Some sort of emergency alternative should be in place. However, I would not let the utility company off without making a fuss either.
THANK YOU! I never could have found that myself. Sid does not rely on oxygen, but cannot get out of a chair unless it's his electric lift chair. His Alzheimer's makes it impossible for him to adapt to a disruption in routine. I am sure I could get his neurologist to write a letter. In the meantime, I AM going to contact the head of the Villa company, my State representative, and the newspaper.
I decided not to make a separate thread for the weekend blog, which discusses the sad Alzheimer lessons learned from this miserable experience. Log onto the home page - www.thealzheimerspouse.com - to read it.
Routine, routine, routine....boring, boring, boring. One little thing out of his normal routine throws him all off. We were so spontaneous "before". Can't be that way anymore. I hate this disease!
So sorry for what you had to go through, Joang. Hope things are settling back down now.
Yes, things are settled now. Spontaneous???? That went out the window about 5 years ago. It's actually better for me to keep him to his routine - less stress all around.
I have nothing to add other than the rage of frustration. I sometimes wonder why those in power, at any given time, whether it be the MA, the front desk person, the PA, the pharmacist, the tech, whomever- why they can't be just kind and patient rather than just full of themselves. And, I think at even at entry level, they do have a lot of power.
On the other hand, all it takes, for me, is to connect with that one rep, at the University, at Medco, wherever, who can care and show that care. What a world of difference it makes!
I realize it may be late to the party to say this, but locally, the tv stations run a lot of ads about "contact us if you have a consumer problem". There are seven stations, four network and three independent, but only one local newspaper. They always ad with a website contact, so maybe that would be helpful if you have that in your area?
Best wishes joan, and thank you so much for this site.
joang ... there is a 4th lesson to be learned from your recent experience, one you've touched on before in other blogs and in responses to others, but is worth repeating. Despite all we know and have learned about how to respond to our spouse's annoying behaviors, we caregivers are only human. We try so hard to always remain patient and tolerant when our spouses ask silly questions, or demonstrate childish behavior, or ask the same questions over and over, or whatever. But sometimes, no matter how cognizant we of our need to be patient and tolerant of our spouse's remarks and behaviors, sometimes an incredibly foolish or obnoxious or selfish or annoying comment or action will produce a 'gut level stress response' from the best of us. When that happens, we usually regret our response almost before all the words are out of our mouths ... but we need to accept that we are only human, and sometimes we will simply say or do someting that we know we shouldn't have said or done. So a 4th lesson from your FPL experience is that caregivers should not to be too harsh on ourselves for occasionally losing our patience when responding to our spouses in stressful situations. As with so much about this horrible disease, it just is what it is.
Oh Joan, I cried softly as I read your new entry on the home page. The comment of "crossing over", to being a caregiver and not a wife so much.
We think we have already done that, but even when they forget who you are for a moment, or sundown for hours on end, sometimes, we think they are still our mates that we first knew.
I have not yelled at him for quite a while, not since the tv clicker episode a couple of months ago. When he cried about it, that was over the top for me.
However I still harbor thoughts and hopes that he is still, a husband...that he is there for me.
Struggling to maintain my space at our Farmers market, where I am loved and appreciated and my little business is doing well. Oh how I hate to think I will lose that, my one and only social moment, and my little rope of finances.
A small letter coming to you Joan, wish it could be more...but I will try to do it more often, I really need this place.
We had a one night power blackout here on our little island last week. I prepared for it, had the candles, flashlights, etc. and told dh to come to bed by 10 (which of course he resisted until the lights went out). He finally got into bed, but, in the middle of the night when he had to get up to pee, he was all turned around. I just knew that was going to happen and it did. I wonder why when he gets confused in the hallway, he always chooses the wrong door even when there is a light on in the bathroom. Well, he ended up peeing on the floor because he was upset and disoriented and couldn't hold it any longer. The next time he got up I was right there with him and led the way to the bathroom. Yes, just one little thing out of the ordinary and it's almost catastrophic to our mates. It's so hard to see this happen to him, to see him reduced to this level and knowing that this is only the beginning of a long, dark, unpleasant journey.
mothert just in case, i used to give dh a large beam flashlight to hold and have on if the lights went out. it seemed to calm him down instead of the dark and or candles. he still enjoys a small one while in his hospital bed at night. grin. and hes way beyond the getting up to pee stage! i know its not fun when things go awry and they become disoriented. during those times it may just be best to get up and take him to the bathroom or have to clean it all up later.:(
Divvi, I surely would have gotten up with him the first time, in fact, I already was up and on the lu myself. When I heard him (we seem to be on the same schedule) it was too late for me to intercede. It was almost comical except for I know it upset him. The minute I sat down on the lu I knew he was going to be getting up and I was "damn" I should of waited. I certainly will make sure that he has his big flashlight next to him in bed at all times now. However, getting him to remember that he has a flashlight is another matter "-).
Coco, email me, will you please, if you still have my email address. I'd like to talk to you about your business. And, Coco, thanks for the hugs. I can laugh about some of these things now and this was a bit on the comical side.
the transition from wife to caregiver...oh, how I yearn to be the wife again. I don't like the position of being "caregiver" very much at all. I like to pretend that I am the wife. I talk to him like it is still the way it was, knowing way down deep inside (probably not that deep) that it isn't that way, except on rare occasions.