BadHat
Hook'M Horns
Premium
join:2003-10-14
Rosa's Place
clubs:   | reply to simplykristi
Re: [Serious] Good Thoughts and Pryers for myt Parents
Prayers continue. |
|
simplykristi
Cancer Sucks
Premium
join:2001-11-28
Metro KC
 ·AT&T U-Verse
 ·AT&T Yahoo
 ·Comcast
| reply to simplykristi
Quick Update
Pallative care will be out tomorrow morning at 9. Due to Medicare rules my dad has to be housebound. My dad usually doesn't go anywhere but to medical appts. Today is a rarity. He's going to his granddaughter's wedding.  Yes, Dad is going!
Kristi
--
My Photo Gallery: »www.simplykristi.smugmug.com/ |
|
rfhar
The World Sport, Played In Every Country
Premium
join:2001-03-26
Buicktown,Mi
clubs:
·Power-Net Internet..
| reply to simplykristi
Re: [Serious] Good Thoughts and Pryers for myt Parents
While you are talking to some of the social workers be sure and ask about respite volunteers. They will help you get away and take necessary time for yourself. Take care of number one first or you will not be able to help others. I'm praying daily for you and yours. |
|
signmeuptoo
Folding and Crunching Not just Breakfast
Premium
join:2001-11-22
LOSTinSpace
clubs: | reply to simplykristi
Yes, you are a saint. Bless you in what you are doing and the best for them too. |
|
usa2k
Please PRAY for Rebekah
Premium,MVM
join:2003-01-26
Canton, MI
clubs: | reply to simplykristi
Re: Friday Update
You are a saint!
Continued prayers to you, your parents, and extended family.
A wish that anyone who every knew your parents will send a heart-felt greeting. |
|
simplykristi
Cancer Sucks
Premium
join:2001-11-28
Metro KC
·AT&T U-Verse
·AT&T Yahoo
·Comcast
1 edit | reply to simplykristi
Friday Update
I got some things accomplished this week. Amazing!
First of all, I was told to get in touch with one of the cancer organizations.... It offers a free case of nutritional drinks to cancer patients each month. My folks each get a case which is cool. Now just to get one of my family members to go get it.... Three of them work down the street and couldn't go get it. We got the approval yesterday.
Secondly, I got in touch with an organization that offers support to patients and their families with serious and chronic conditions. My best friend wants me to visit the office ASAP. I am trying to go early next week.
Furthermore, I took Dad back to the oncologist's office today. My mom has more or less thrown everything in my lap and wants something done with him. (She expects me to run the household. That's another story for another day.) I got my dad's pain meds changed. He's taking Oxycodene and using a Fentanyl patch instead of the morphine. Dad was getting too many hallucinations and his mood was too volitale. He was getting sooo confused and Dad's WBC was 1.5 and his platelets were 98. His hemoglobin was borderline so Dad got IV fluids and a unit of blood today. We had to go over to the BMT Unit to get the blood. It made for a long day.
My best friend went with me to the appt. Thank goodness for that! We were having some issues with my dad's behavior. I don't know if that the behavior issues will ever be resolved or not. My dad's not the easiest person to deal with even when he is not sick. His cancer has made things very worse for him. He literally jumps by mom and I. We can't do things right or move fast enough for him. My mom told me that I could not bring my dad home until changes were made. I was really wanting the pain med change because my mom wanted it and my dad needed a change in pain meds. I got it.
I am not one to mince words... I flat out told the nurse practitioner that my dad is going to die. I told her that I know my mom has a little better prognosis (never been given one and don't want to know so she has fighting chance) and know she wants to fight it. Mom can't fight it with my dad around. She suggested that my mom go stay with a family member to get away. I kind of made the offhand remark to my oldest brother who has plenty of room and he acted like he did not want to deal with it. Whatever. His attitude is I can deal with everything. He does not offer to financially help out around here. He just criticizes. My middle brother is probably my best helper... But I have some issues with him... Right now his kids are here for a few days due to the wedding. They are really no problem as they are old enough to watch out after themselves. Again, my best friend stepped up to the plate last night and tonight.. We took the kids out of the house for awhile. Last night it stormed so we had to get ice cream and come back home. Tonight we took them to a park and then for ice cream. No thanks for taking them or anything. I have asked the kids to help me with some tasks around here and they have been awesome about that. We are working on getting the basement organized as my mom never bothered to do that. I hope to complete that project with the kids' help over the summer.
My mom won't do simple tasks like make calls. Guess who gets to get the estimates for the cleaning service?? Me I have to find time to do that in between appts. I am sorry that she has cancer. But I needed her to help me before she started treatment. I lost the mom I knew on April 25th when she got the news about the nodule in her lung. She behaves much differently now. She won't call the dr.'s office if she has a problem... She makes me bring up her issues when I take Dad in for appts. I cannot concentrate on one parent. Today she told me that I must run the household in addition to all the medical stuff. WTH?? I flat told her I cannot handle running the household and taking care of all the medical stuff. My friend told me later that she couldn't believe what my mom told me. I miss my old mom very much. The new mom is a stranger to me.
Tomorrow, er today, home health is coming out... We are going to get them to evaluate hydration for needs for my dad. He's eating a little better. There's still some talk about a feeding tube. My mom feels I can't handle that. WTH?? I don't want to deal with the feeding tube but I will if I have to. One of my neighbors told me that home health could come in and help. I would want good instruction on how to work with the feedings and the pump.
If it were not for my best friend and another close friend, I would probably be losing it right now. I am probably headed for a crash.... I have felt like it for almost a week. I am exhausted and my family fails to recognize it. They blame it on my late night computer usage. I am really sick of the people who sit back and tell me what to do. I feel like walking away because I am absolutely sick of it.
I apologize for the long vent but I needed to let it out. I better close... We have a wedding later this evening! I can't believe that my oldest niece is getting married.
Kristi
--
My Photo Gallery: »www.simplykristi.smugmug.com/ |
|
simplykristi
Cancer Sucks
Premium
join:2001-11-28
Metro KC
·AT&T U-Verse
·AT&T Yahoo
·Comcast
| reply to mouseferatu
Re: Quick Monday Update
You are right, Ariel. The medical stuff matters to me the most. I spend a lot of time at medical appts. I've been to numerous dr. appts. (lost track), two PET scans, two bronchoscopys/biopsies, eight radiation treatments, four IV fluid infusions, one platelet transfusion, two port placements, one upper GI scope, and one colonoscopy since May 2nd. The onc's office is becoming to know me too well. The medical assistant and I kid around with each other. LOL She will ask me how I am doing and I always ask her about herself.
I help Dad with his medications. He's having a lot of confusion right now because of his pain meds. He takes sooo much morphine (at least 90 mg a day). He wants to drive to his appt. on Friday and I flat told him no due to the morphine he is on. I try to get him to be independent with his meds as much as possible.
It's all about priorities for me... What matters to me most... And that's my parents' medical care. They were always there for me, especially in my younger days. It's my turn to be there for them with their medical stuff.
Kristi
--
My Photo Gallery: »www.simplykristi.smugmug.com/ |
|
mouseferatu
Too many cats, Too many mice
Premium,MVM
join:2004-03-16
Im not sure
clubs:
·Verizon FIOS
·Fairpoint Communic..
·Comcast
| reply to simplykristi
You have it just right, Kristi- it isn't that you can't clean, but there are a lot of folks out there who can help you with that, so why worry about it? There are many things that deal directly with your parents care that you are going to want to have control over yourself that will take up a lot of your time.
I found that once we had other people doing the cleaning and pick-up work, I didn't care any more if the glass dog got dusted or not, or if the piano cover was up or down. A lot of those things just didn't seem to matter. I admit that finding a cast-iron elephant in the refrigerator puzzled me, but, hey, what the heck?
What mattered was that I had a great deal more patience with the people who needed it, a great deal more time to do things that really pleased my mum, a lot more time to cook and give my dad (a great cook) a break, and a bit of time here and there for all of the other things that actually mattered.
I think that we all took away several lessons from a very long haul.
We learned to rally our forces, and do the stuff that mattered the most, farm out what we could, say "thank-you" graciously to friends who offered help (and *accept* that help), and not sweat the small stuff.
It allowed us, as a family, to keep my mum at home, when, in her case, most professionals recommended that we should "find a placement".
--
"Do not meddle in the affairs of dragons, for thou art crispy and good with catsup." |
|
simplykristi
Cancer Sucks
Premium
join:2001-11-28
Metro KC
·AT&T U-Verse
·AT&T Yahoo
·Comcast
| reply to mouseferatu
Yes, I will definitely chat with my uncle when I see him again. I can always call him too. My aunt finished her treatment back in January.
My brothers really don't get it, I don't think. I don't think that they have a clue as to what I do. Tonight, Mom and I started to talk about it and we got interrupted with phone calls so we never got back to the conversation. 
It's not that I can't clean... I can but I would rather conserve my energy for something else like going to appts. and things like that. I am the medical savvy one. My oldest brother is medical savvy due to his kidney disease but he does not have time to go to my parents' appts. His wife goes with me to a lot of appts. Lately I've grabbed whomever I can because she is busy helping my niece get ready for her wedding this Sat. I coordinate all the transportation since my parents and I don't drive.
Kristi
--
My Photo Gallery: »www.simplykristi.smugmug.com/ |
|
BadHat
Hook'M Horns
Premium
join:2003-10-14
Rosa's Place
clubs: | reply to simplykristi
Re: [Serious] Good Thoughts and Pryers for myt Parents
Prayers still cranked here. |
|
mouseferatu
Too many cats, Too many mice
Premium,MVM
join:2004-03-16
Im not sure
clubs:
·Verizon FIOS
·Fairpoint Communic..
·Comcast
| reply to simplykristi
Re: Quick Monday Update
It will be a very good thing to have someone help out with the housework, Kristi!
When my mum was so ill, that was something that all of us "sisters" arranged...
None of us individually had the money to hire someone through an agency to help with the house and some occasional personal care for Mom. But, when we pooled our "girl's night out" money together, we had enough to make a real difference for Dad and whichever sister was helping with my mum.
I think that talking to your uncle is also a very good idea... he has been there, and may have some very good ideas for you.
--
"Do not meddle in the affairs of dragons, for thou art crispy and good with catsup." |
|
PeteC2
Got Mouse?
Premium,MVM
join:2002-01-20
Bristol, CT
clubs:
·AT&T Yahoo
| reply to simplykristi
said by simplykristi  :I got a huge break today... My mom's brother and his wife wants to pay for someone to come in and clean every two weeks. I was speechless! My aunt had breast cancer and gets it. I should really talk to my uncle because he was her primary caregiver during her treatment. Kristi That is just great! It is unfortunately all too well established that caregivers themselves become incapacitated due to the physical and emotional demands of what they are doing, and the tendency to ignore their own health & emotional needs...I think that having a little extra help is a fabulous idea, KUDOS to your uncle and his wife!
--
...something is happening here but you don't know what it is...do you, Mr. Jones? |
|
santy
Don't Follow Me, I'M Lost Too
Premium,MVM
join:2001-06-10
Wilmington, IL
clubs:
| reply to simplykristi
Re: [Serious] Good Thoughts and Pryers for myt Parents
Thank you for the updates. I'm glad things are looking up and that you are getting lots of info on various things to help out.. Prayers and mojo still on the way to you and your family.
--
You don't quit playing 'cause you're OLD. You're old BECAUSE you quit playing!! |
|
simplykristi
Cancer Sucks
Premium
join:2001-11-28
Metro KC
·AT&T U-Verse
·AT&T Yahoo
·Comcast
| reply to PeteC2
Re: Quick Monday Update
I know. I got a great packet from the National Family Caregivers Association in the mail today. It's full of ideas. I also emailed a local organization about some education for some of my family and some coping issues.
I got a huge break today... My mom's brother and his wife wants to pay for someone to come in and clean every two weeks. I was speechless! My aunt had breast cancer and gets it. I should really talk to my uncle because he was her primary caregiver during her treatment.
Kristi
--
My Photo Gallery: »www.simplykristi.smugmug.com/ |
|
usa2k
Please PRAY for Rebekah
Premium,MVM
join:2003-01-26
Canton, MI
clubs: | reply to simplykristi
That is very encouraging Kristy! |
|
signmeuptoo
Folding and Crunching Not just Breakfast
Premium
join:2001-11-22
LOSTinSpace
clubs: | reply to simplykristi
Re: [Serious] Good Thoughts and Pryers for myt Parents
Here's to continued improvement a great hope! Still pulling for all of you. |
|
PeteC2
Got Mouse?
Premium,MVM
join:2002-01-20
Bristol, CT
clubs:
·AT&T Yahoo
| reply to squirt
Re: Quick Monday Update
Yes, I am glad to hear that he's doing a bit better.
Don't forget through all of this to take good care of yourself Kristi! With all that you have going on, it is all too easy to neglect yourself!
--
...something is happening here but you don't know what it is...do you, Mr. Jones? |
|
squirt
cacatne alces in silvis?
Premium
join:2004-04-27
Out Grazing
clubs:
·Shaw
| reply to simplykristi
said by simplykristi :I need a huge amount of good thoughts, mojo, healing light, and prayers that Dad is able to attend my niece's wedding Sat. evening. It would mean sooo much to us for him to be there. A neighbor has offered to loan him a wheelchair. Lots on the way. It's great to hear that things are a bit on the upswing for your Dad.
Take care!
--
And many are the dead men, too silent to be real.
- G Lightfoot |
|
simplykristi
Cancer Sucks
Premium
join:2001-11-28
Metro KC
·AT&T U-Verse
·AT&T Yahoo
·Comcast
1 edit | reply to simplykristi
I normally try to update just once a week on Dad. But I just wanted to say that things may be on the upswing finally! Dad had an appt. with the onc and blood draw and fluids.
First of all, Dad has eaten more today than he has in days. He's had two Ensures and a scrambled egg. He even had a glass of water during his IV fluids today.
Secondly, his counts are starting to come up... His white blood cell count is at 0.7 (better than 0.1!) and his platelets are at 48,000 (better than the 5,000 on Friday!). I realize the counts are still low but at least they are coming back up from Friday.
On Friday this week, Dad sees the nurse practitioner and has blood draw and IV fluids.
I need a huge amount of good thoughts, mojo, healing light, and prayers that Dad is able to attend my niece's wedding Sat. evening. It would mean sooo much to us for him to be there. A neighbor has offered to loan him a wheelchair.
Kristi
--
My Photo Gallery: »www.simplykristi.smugmug.com/ |
|
rfhar
The World Sport, Played In Every Country
Premium
join:2001-03-26
Buicktown,Mi
clubs: | reply to simplykristi
Re: [Serious] Good Thoughts and Pryers for myt Parents
I'm praying for him twice a day. |
|
