Wednesday - February 3, 2010
Wednesday afternoon, medical equipment arrived to mom’s home. In came a wheelchair, an electric hospital bed with air mattress complete with side rails, and a potty chair. Odd there were no linens and I just realized there are none in the house that would properly fit a Twin XL bed. So, we’ll have to make due.
Within an hour mom arrived by ambulance with two burly men. As they attempted to get her into bed, she just sunk to the ground with no strength in her legs to help. Fortunately, they caught her and were able to secure her in her new bed with no harm.
Mom was pretty much out of it and slept until a nurse arrived that evening for “tuck in.” On the first night they often schedule a nurse to guide the family on how to adjust the bed, the usage of a “draft sheet,” and how to administer a bed pan, and change a pee pad.
The embarrassing part was learning how and why woman wipe front to rear and rotating the paper. Women… you know what I mean. Men… don’t ask! It gives a whole new meaning to "Shaken, not stirred!"
With her came a mysterious “emergency kit” that was to be placed in the refrigerator and not opened without permission. It was adorned with security tape. I assume we’re talking some heavy duty drugs here.
I purchased an intercom system from Radio Shack, so I could hear mom when she needs me. It’s very cool and has several ways to use it. It can be a standard Push-to-Talk intercom, it can be set like a baby monitor for constant listening, or it has a VOX capability which is the reason I bought this model.
This is not a cheap setup and works very well for our situation. I would highly recommend it. It can be plugged in, but it’s also compact and has the ability to charge rechargeable batteries, making the portability factor unlimited.
The system stays off until mom says something loud enough to trigger the microphone, sending the message to my intercom. It’s only flaw… it tends to miss the first word. If mother just calls my name alone, it doesn’t seem to trigger. So, I have taught mom to use a full sentence, so I know she needs me. On occasion it will pick up her all too loud TV programs, but there is an adjustment for that. So far, it works great.
Personally I don’t like the monitor function for adults. First, I feel it’s too invasive and second, I really don’t care to hear every thing from a nose being blown to farting! The monitor feature is best used for babies in my opinion.
At 1 AM I hear my first call to duty, “I have to pee!” followed by a series of calls about every 2 hours! They continue throughout the night. OMG!
The next few days we had a Social Worker, a Nurse, a Caregiver, and a Chaplin all visit. I need to install a revolving door! I am promised all kinds of help for both mother and myself.
Mom was a bit upset when the Chaplin spent almost two hours asking everything from what her religion was to what here burial wishes are and then never asked her if she wanted to pray. It seemed more like a business interview to me. She was very hurt. I didn’t even realize it until after he left and mom tearfully brought it to my attention. Shouldn't this have been his main objective? This would be one of many let downs from this hospice group.
I’m beginning to realize this is not going to be easy. I’ve been promised a lot of help and they just need time to get the right matches in place. They say they will find a woman to sit with mom, maybe read to her giving me time to run errands. I hope it’s soon. I’m already exhausted running back and forth with a bed pan! So far, no help for me.
Thursday – February 4, 2010
I ordered mom several sets of high thread count luxury sheets and Egyptian cotton towels along with some quilted washable pee pads. Hospice has provided cheap disposable thin plastic backed pads that aren’t acceptable to me. No expense is spared to pamper my mother.
This could be a long bedridden journey and I want her as comfortable as possible. Mother has always been spoiled in this department. She likes nice things and loves her comfort and luxury items. I’d call her a master shopper. She loves flea markets and has a love of JCPenny. As sick as she is, QVC and HSN dominate her viewing while awake. There was a time she had QVC on speed dial! Mom is a very compulsive shopper. The very reason QVC is in business!
Friday – February 5, 2010
Mom continues to chime like Big Ben, “I gotta pee!” She pees so often, but mostly just a dribble. I ask why she can’t hold it for a few hours and give me one good wiz. She keeps telling me, “The pressure, the pressure, I can’t stand the pressure.” I begin to rate her “work” on a scale of 1 to 10. Most are a 2, but when she does good, we celebrate. We are pretty twisted.
Saturday – February 6, 2010
Mom is resting better. I have called the on-call nurse a few times for advice. They sent out Xanax (Alprazolam) to keep mom calm and help her rest more comfortably. I wanted to know where mine was!!! Fortunately, my doctor has already prescribed my own. One thing I like about Hospice is that the have a 24 hour pharmacy with home delivery, and they even deliver late at night if necessary! Still no help for me. Even my family has failed to help at this point.
Sunday – February 7, 2010
Mom is eating well, not big meals. Today it’s been a bowl of cereal with fresh fruit, a half of a grilled ham and cheese sandwich and a strawberry Boost nutritional drink. Her meals are small, but she is still getting used to solid food again after being fed intravenously in the hospital.
Monday - February 8, 2010
Mom has been very demanding since she has been home. Things like…"I’ll have pancakes.” I didn’t ask what she wanted. It just came out like a demand. “Get me some juice. Cut my muffin and put cream cheese on it”…OK hold on…I’m feeling like a slave. I have absolutely no problem helping her with the things she needs done, but I draw the line when she is fully capable of spreading cream cheese! Don’t treat me like a damn slave! Being deprived of sleep doesn’t help my mood either!
Still no help from anyone! I'm waiting for some help from hospice so I can get groceries. I've asked family. No help there. It's time to get mom's nurse back if I can. I should have done it first thing, but I believed hospice would be giving more help. Bullshit! My family sucks!
Tuesday – February 9, 2010
Mom is doing really well. Still on the bed pan, but looking good and all this time VERY clear headed. For breakfast, she asks for 3 pieces of cinnamon raisin bread (her favorite) with cream cheese, and some juice. I asked if she wanted her teeth (full upper, partial lower) and she declines. She wasn’t feeling well the whole day. By evening she began throwing up. The raisins reappeared whole. I think, “Should have used your teeth!”
Then the famous words that will be etched into my brain forever, “I gotta pee!” Every time I remove the bed pan, I check her colostomy bag to see if it needs changing. There’s nothing in it. It’s very odd to go all day without anything at all in the bag. In fact I’ve never seen that before.
One hour later “I gotta pee!” After the routine I check her bag, it’s ready to burst! It is completely full with brown liquid. No solid waste what so ever, just something that looks like strong coffee. I empty the bag and clean her up.
One hour later, “I gotta pee!” CRAP! Once again the colostomy bag is ready to burst with this brown liquid. I’ve NEVER changed a bag in less than an hour like this before.
One half hour later. I gotta pee!” Same routine, and once again the bag is half full of this brown coffee like liquid. There is something wrong! I called the on-call night nurse and she is dispatched to the house.
Upon arrival she asks for the mysterious “hospice kit.” She opens it up and removes nausea medication and suppositories. Never in my life have I ever used them.
Now I have a dumb question, “If a person has a colostomy bag and they are no longer using the rectum because it’s no longer connected to the digestive system…do suppositories still do their job?” I get a blank stare from the nurse. “Well,” she says, “I’d have to say yes, as long as the blood vessels are intact. Good question.” Hum…
I hold one suppository up to mom’s face and say, “This is called “Brian’s revenge.” Are you going to let me get some sleep tonight?” We all have a good laugh.
I inspect the kit while it’s open. As expected, these are some serious meds including syringes of morphine. The kit is placed back in the fridge and I’m instructed on the administration of the medications given.
1:00AM - 2:00AM - 3:00AM
“I gotta pee!” mom chiming in like Big Ben…every frickin hour! But this time the 3AM call is a bit more entertaining.
Mom roles on her side for me to place the bed pan and the cheap pee pad placed underneath her has crawled up her butt crack. So, I do what any good son would do in this situation…I pull. It didn’t budge.
I make a second attempt with the same result. I steady my foot against the bed rail and give a serious pull and begin to hysterically laugh saying, “Give it back! Give it back!” It evoked memories of my childhood when a playmate would take one of my toys! “Give it back!” and mom begins to laugh so hard and says, “I can’t move my leg!”
With one hard yank out it came and we both had tears in our eyes from the laughter. Mom says. “I never dreamed I’d ever have a tug-o-war with my ass and my son in my lifetime!!”
After I placed a fresh pee pad under her and let her complete her mission, mom rested comfortably. I think the tug-o-war wore her out! I actually got 3 or 4 hours of sleep afterwards. A sheer luxury at this point, until I hear, “I gotta pee!” on my new enemy, the intercom. Whose idea was that damn thing anyway? Anybody wanna play football??!!
PS - Mom is getting the care she needs, but still no help for me!
Wednesday February 10, 2010
Today is bath day. Mom has requested to PLEASE help her out of bed so she can sit up. She has sat up on the side of the bed a few times, but she’s never really comfortable.
After her in bed bath, I change her colostomy bag and the caregiver helps me get her into her wheelchair without much trouble. Things appear to be looking up. Mom has nicknamed her Coochy-Coo because she says that to mom when she bathes her, if mom gets tickled by the wash cloth.
Coochy-Coo strips the bed and places mom’s new heavenly high thread count sheets on her prison of a bed. Now is a good time to trim mom’s hair. So, I get the razor and scissors and clean her up. I ask if she wants to do her nails.
My mother has always had the most naturally beautiful nails, never fake. All women are envious of her nails. Due to recent events they have grown too long and her polish is worn.
She removes the polish and proceeds to file them to a perfect length and shape. When she begins to apply her pretty soft pink polish, she begins to shake and make a mess out of her first attempt. I offer to help her even though I have never done this before.
I used to paint houses for extra money while I was in college. It can’t be that hard, right? I needed to have her set her hand on the tray table while I pressed down firmly to keep her from shaking. I have to admit, I did a damn good job. Mom is really looking good for a change.
Coochy-Coo has to leave and mom asks if she can remain sitting in her wheelchair until the nurse comes in about an hour. That shouldn’t be a problem. Mom is enjoying her freedom, and I can only imagine, she’s feeling very refreshed.
The nurse arrived to the tune of, “I gotta pee!” We get mom off the wheelchair and slide the potty chair underneath. This is the first time she has used a real toilet in 3 weeks!
After the deed was done mom says, “I’m tired. Get me back in bed.” Our attempt failed miserably. With the nurse in front and me in back, we lock arms and try to get mom to dance (rock) herself back to the bed only 2 feet away. Mom begins to yell, “I’m falling! I’m falling!”
“Mom, you’re OK, You’re fine.” I reassure her. I was wrong. Coochy-Coo had put a satin nightgown on mom after her bath and mom slipped right through our arms like a greased pig. Right to the floor she went as the nurse says, “Follow her down and go slowly.” Mom was not hurt.
Now on the hard tiled floor she lays. Unfortunately, she has been in this position quite a few times in the last few years. She’s too heavy for the two of us to lift. We are both less than 130 pounds and mom is 200+ with absolutely NO strength in her legs to help support herself.
I make mom as comfortable as possible. I give her a pillow and cover her to keep warm. Then called EMS and tell them I need non-emergency assistance.
Mom is only complaining that her big toe hurts and the hard floor is uncomfortable on her back. I shore her up with pillows and wait for EMS. It seems EMS does not have anyone to send for a “non emergency” so they call the local fire department for assistance.
The cavalry arrives and mom is now safely back in a fresh luxurious bed with a haircut and newly painted nails. It’s been a rough, but productive day. I think mom has made some progress.
Thursday February 11, 2010
I’m very sick to my stomach without an ounce of energy. I beginning to realize I'm sacrificing my own health as a cancer patient to care for my mother. I thought I would have more help from hospice and family!
Mom is sleeping and pee breaks are about 4 hour intervals. I manage to feed her and get back to bed. I’m exhausted with nothing more to give right now.
I hand mom the phone and beg her to call Grace, her private nurse/caregiver she's had for almost two years. I would have called her sooner, but I believed in the promises from hospice and thought maybe the family would have cared enough to help. I am bitterly angry!
I awake at 8:45 PM. Mom is sleeping as I begin to cook dinner. Feeling a little better and can’t believe I slept the entire day with only a few pee breaks. Mom is a bit out of it. She says “It’s so strange to be so dark at 9 o’clock.
I think she’s joking, but with a few questions I realize, she thinks it’s 9 AM. I know it’s not unusual to get things confused, but this is one of mom’s first tells that something might be wrong.
I begin dinner when mom says…(say it with me)… “I have to pee!” Stir the stir-fry, get the bed pan, stir the stir-fry, then remove the bed pain. (yes I was wearing gloves) We are going through about 2 boxes a week! Clean the bed pan, wash up…oh shit...stir the burning stir-fry.
After dinner mom still looks dazed. I ask a series of questions to check her mental capacity:
Q: What year is it?
Q: Who is the President?
Q: What was your mother’s name?
A: I got no mama!
A: I got no mama, Obama!
Q: Stop screwing around! Who am I?
A: The biggest pain in the ass I ever met!
OK she’s fine!
Just to be safe I’ll check her blood pressure…180/165 with a pulse of 149! Holy crap! I take it again. Mom says, “I need to pee.” Ah shit! OK Take the BP again with similar results, get the bed pan, take BP a 3rd time! Still whacked.
I call the 24 hour on-call nurse. I explain the problem and once again explain…I feel there is a problem with mom’s Catapress patch (for blood pressure) Mom has no chest pain, no blurred vision, and does not feel the need to go to the hospital.
The nurse confers with the on-call doctor and returns with…take the Ativan out of the emergency kit, give it to her if her BP spikes again and continue every 6 hours until it adjusts or if you feel she needs to be hospitalized, do so. The on-call doctor also agrees that mom should be put back on her Catapress TTS-3 patch! Finally someone willing to commit to a decision!!!
The new patch was placed and her numbers have normalized with no Ativan administered. Tada! I’m beginning to think I should have been a doctor. Some of it is common sense and knowing the patient’s history.
One more check on her BP and I’m going to try for more rest. Mom is stabilized with a BP of 146/71 – pulse 63 comfortably watching TV as if nothing is wrong.
OK need some rest…goodnight!
"My (colostomy) bag is full!” mom announces calmly through the voice box that lay on my bed. Oh CRAP!!!! Literally! Who needs sleep anyway???
IGP! By this time I’m seeing plaid. I’m so tired. I need help dammit! I can’t see straight and I’m feeling slap happy.
I enter the family room/hospital ward/bedroom singing dramatically to the tune of: I Gotta Be Me. “I gotta pee… I gotta pee…” and mom finishes BIG with, “and if I can’t pee, then you will see, I’ll pee all over me!”
I busted a gut with laughter. This pee run was worth it! By far the most entertaining to date! Yup, we’re a pretty twisted pair for sure.
More to come...