Episode IV...A long Time Ago In A, Well You Know the Rest

[Guest NowakowDA]

Well! I've found a new way of coping. It's called eating, and if I don't stop eating, I'll end up looking like Jabba the Hut. But after last night, I could eat my weight in piazzas, and that would be a lot of Red Baron Three Cheese piazzas.

Tuesday night I woke up at three. I went into Mom's bedroom. I found her standing in the dark She was breathing heavily. She had a bad wheeze and could not speak above a whisper. She told me that she was very sorry and deeply embarrassed. When I asked what the problem was, all she would say is that she had an accident and she was very embarrassed. It took me a while, but I finally figured out what had happened. The bed was wet. This is the third time in the last week that I've had to turn the mattress and change the sheets. I managed to calm her down after a while. I had her use her inhalers and got some fluids in her and turned her oxygen up. However, I couldn't do anything about the confusion, disorientation or hallucinations.

Wednesday, did three loads of laundry. Got everything clean. Got her some lined disposable under pants. Adjusted her fluid intake so that she drinks less later in the evening. It seems to work. Now if I could do something about the delusions.

For the last three nights at about the same time each night she will become agitated. This starts her to breathing hard, which gets her more agitated which. You see where this is leading????

Anyway, about four this morning she started having one of her episodes again. This time it was a really bad one. Her breathing was hard and shallow. She kept getting agitated. After a short while she had become very hyper. At this point her mind, or what was left of it was totally gone. She said that she wanted to go to the hospital. Mom “hates” hospitals. So when she said she wanted to go,I knew things were bad. Sometime before 5:AM I had her in the ER at Kaseman Hospital. Tests followed, including x-ray, CT to the head, and blood work. Results! The doctor said he didn't think the tumors were causing the problem. It could be the pressure inside her skull It also could be the Dexamethason. What!!! Yep. He said that the medicine to reduce the swelling of her brain can cause confusion, delusions and or hallucinations. Why that little-son-of-a! He said that the periods of confusion and hallucinations are known as delirium or more commonly called sundowning. Where the hell's that Red Baron Super Deluxe artery clogging, heart stopping pizza I bought!

Don

[Ry]

Jabba~

I hope you can clear up your mom's confusion soon. If it is the meds at least there's a solution. You can also get the disposable bed pads to go under her if the underwear doesn't do the trick. Also, a baby monitor might be a good idea. You talk about getting up to check on her in your other posts this way you'd hear her when she woke up.

I hope all goes well soon and that you don't have a cardiac in the meantime.

Rochelle

[Dollfan19]

Don,

You're doing a great job with your mom even though you are eating yourself happy. I think it's normal under any situation. I did it and have not stopped and the reason is no longer with me. It just feels great. I had a Freshetta (spinach, portabella shrooms & garlic) last night, you must try it. Two of us at the whole thing. Awesome! I hate myself today.

Your courage with your mother is outstanding, please keep up the great job. She's knows you love her.

Abby

[Guest NowakowDA]

As for the baby monitor, I've been thinking about that one. My cousin in Wisconsin said that she used one when her mother had a stroke. MJ said she was able to monitor her mother without running up to her room every five minutes.

Disposable bed pads? I never even thought of that. Wow! Where can such a product be found?

Pizza contains all the important food groups such cheese and more cheese and still more cheese. The third rule of the cosmos (at least in Wisconsin) states that there is no such thing as too much cheese.

Don

[Jana_W]

Hi Don

It does sound like you are doing an absolutely stupendous job with your Mum. It must be very hard at times but the love you obviously have for her must help.

As for cheese...........is there any other food group? Maybe you should whip yourself up a cheese fondue over the weekend. Mmmmmmm.....

Jana

xxxx

[Ry]

Don,

You should be able to find disposable bed pads at any good drug store probably near the Depends and those products.

Yes, baby monitors are quite sensitive you will hear her if she needs you and they don't cost much. You can also get a monitor that is like a little TV so you can SEE her if you want to!

When our son was 2, I had put him to bed and was downstairs watching TV. I started to hear a change in his breathing, then it got a high pitched sound, went up to see what was going on and ended up rushing him to emergency. His throat was closing from Croup.

Ah yes, the power of melted cheese! Throw some veggies on it and you have health food.

Good luck

Rochelle

[Dollfan19]

Along with the pads (blue chucks as they are called), you can also purchase a plastic mattress cover so you don't have to keep turning the mattress. They are fitted and very inexpensive. You can find them at Wal-Mart, etc.

Again, keep up the strength and keep eating pizza. It does have all the food group if you put them on top.

Abby

[Snowflake]

Don,

Those mattress pads Abby mentioned...there are the inexpensive ones that will cause the person sleeping on them to sweat a lot (I spent the night at a friend's house once and slept in her son's bed and it was uncomfortable to wake up drenched in sweat). There are ALSO some that are a bit more expensive but are quilt-lined so there isn't the sweating issue (sounds like an advertisement for Quilted Northern toilet paper)...

Decreasing her fluids at night and the disposable pants may do the trick and save the sheets (since no matter WHAT covers the mattress, you still have to change the sheets when the bed is wetted).

You say that her episodes are the same time every night/early morning - sounds like it is a drug-induced thing, especially if she receives all of her meds like clockwork....

I have been experiencing confusion and was beginning to wonder if I had early-onset Alzheimer's - no lie! I'm forgetting a lot of important things (one being my husband's name off and on, but he doesn't know that, I cover by calling him "Sweetie" or "Honey" or "Dear"...) and have some concerns with safety since I "forget" to stop at red lights sometimes - and have even made a left turn at a red light! This all lead me to seek a bit of help so I was referred to a neuropsychologist...in our interview this week, he told me that some of the confusion, etc., can be caused by the cancer itself or any of the many drugs we are all popping or receiving. Great...now how do I 'fix' it??

....and here's another issue I'm dealing with, I have no clue what my point was when I typed that last paragraph! Maybe it was something along the line of her age leading to a possibility of dementia and not something caused by the cancer OR something totally caused by the cancer... I don't know...lost myself..

Take care, I sure hope your days brighten and you don't discover FRIED cheese! (...and Pizza Hut's "Cheese Lovers" pizza is pretty good when hot and in a pan...I'm with you on just nekid cheez on a pizza!)

My best,

Becky

[Guest NowakowDA]

Well! Last night was different. I got up about 11:PM and found Mom wondering around. I asked her where she was going. She told me she was looking for a bathroom. Got her back to bed, which stayed dry all night. Then she started telling me about all the people who were stopping buy to see her. She now has a new friend. A little girl with dark red hair and a big hat. RIGHT! Bring on the drugs! I need some too! I gave her two Risperdal and an hour latter she was slumbering. I kept most of the lights on last night. If she starts wondering around she won't feel that she's in a dark house all by herself. She has started referring to me in the third person.

After listening to her tell me about her invisible friends I slept with the light on in my room, and the covers pulled up over my head. She slept all night and stayed in bed till about 7:30 or 8:00. I'm thankful for small miracles.

Don

[Fay A.]

My Mother reached the point where she thought I was a Nurse named Margaret, and she would talk to "Margaret" about her chlldren, especially the "troublesome" one named Fay....

I would tell her not to worry and to rest easy because I knew exactly how to handle that strong willed eldest daughter of hers.

I know how hard it can be to hear some of the things I our Parents have to say about us when they're speaking to someone else. Try to not to be hurt by it if what they say isn't complimentary. I would kept reminding myself that when she wanted to go home and not remain in the hospital she called me....when she wanted more aggressive medical treatment and it wasn't forth coming she called me....when she wanted someone to enforce her wishes she called me. So maybe being "strong willed" wasn't such a bad thing after all.

As far as the night time wandering....a friend of mine put up a "half door" on her Father's bedroom door with a motion alarm that would go off if the door was opened during the night. The half door did not replace the existing door. It hooked to the door frame in the hallway like an old time wooden screen door. It was an added bit of assurance that she would be awakened if he got up and out of the room. Bedrooms were on the second floor and she was worried about him falling downstairs.

You're doing something many children cannot handle. You have my respect and admiration. This is a tough, tough thing to do.

[Don Wood]

Don, you are doing a terrific job being primary caregiver for your mom. I do worry about you, though. You need to take care of yourself as well, besides eating every pizza in sight. Can you get anyone to help relieve you from time to time so you are not living cancer 24/7? Do you have any fun outlets to relax? If you neglect your own health, you, too, will be sick and that not be able to take care of anyone. Again, big commendation on taking care of mom. Don

[Guest NowakowDA]

Don! I'm all there is here. I've been taking careof Mom 24/7 since she gotsick. Right now I don't even work. I'm living off my savings. I had been putting aside money for a long time. Wanted to buy a home of my own. Now, that's gone.

Fun? Relax? Right now I'm trying to get through each day without a major crisis. At present, my life is on hold.

Don

[paddy]

Hello Don,

I really feel for you, I am so sorry you find yourself in this awful position.

You are doing a wonderful job looking after your Mom but it must be very lonely for you.

Why don't these doctors warn people about the side effects of some of these drugs, it really is too bad!

Is your Mom taking "Ambian" (a sleeping medication,) by any chance. When my husband was taking this med he became quite delusional.

I will be thinking of you and your Mum and sending prayers your way.

Paddy

[espy]

Don,

My 3 sisters, mom, husband and brother-in-law recently took care of my father round the clock for 7 days until his passing on June 17th. I can't even imagine doing it for even a day by myself. You certainly are carrying a heavy load. I know some people have had negative experiences w/ Hospice, but we had a very, very positive one. Whether it was a home health aide, a visiting nurse, or a hospice nurse, it seemed like someone always showed up at the right time. After each one left, I always felt so much better. They listened to our concerns, gave us tips on how to care for Dad as well as ourselves, showed genuine concern for my father, and gave us confidence when we really needed it most. Have you thought about looking into a visiting nurse service and/or hospice?