Issues and more Issues

simplyklb · Posted: Mon Jun 09, 2008 11:06 am Post subject: Issues and more Issues

Hi All,
I had a couple of issues yesterday.

First of all, there were too many family members here yesterday. One of them who feels the need to come over every weekend and the other needs a cookout every weekend. My dad does not want people over here partying. He's fed up with it. I don't blame him. My friends are sensitive to that and refuse to come in now. (I can't have friends over and can't leave the house. GESH.)

My second issues is my family does not understand about the low counts. My youngest brother came over with a sore throat. I told him that he could NOT come in. My mom told him that he could not come in. I went out for a bit because I had to talk to someone. I come back in and my brother comes in uses the bathroom and sits at the computer. I was fit to be tied!! My family looked at me like "What?"

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

brainman · Posted: Mon Jun 09, 2008 12:15 pm Post subject: Re: Issues and more Issues

Kristi, families are a blessing. However, they can also be a pain. You do need to find a life apart from being a care provider for your parents. It sounds like you need to find a way to explain your needs to get out to your parents if your friends cannot come to see you.

As for your brother... well... sounds like he needs to grow up and think more about what is best for his parents. Being sick and still insisting on visiting someone with cancer is not very wise.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

simplyklb · Posted: Mon Jun 09, 2008 5:39 pm Post subject: Re: Issues and more Issues

Jim,
My brothers would do anything for anyone. I just think that they don't know how to handle this with my parents. My brothers do what they can but sometimes I need them to do a little more. I had a heart-to-heart with my mom today. I told her why I am sooo concerned about the low counts. I know I am going to lose my dad to the cancer some day. I don't want to lose him because someone made a bad choice and to come in with a sore throat, cough, or whatever. The medical assistant today suggested masks.

Others understand. My aunt was talking to my mom today. She told my mom that she and her husband (my mom's brother) want to do something... pay for someone to come in once every two weeks to clean. I told my mom that she just made my day! I can handle my parents and my laundry. I will make my brother do his own and his kids (when they are here).

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

brainman · Posted: Mon Jun 09, 2008 7:13 pm Post subject: Re: Issues and more Issues

When I was in the hospital back in 1992, my blood counts we so low that for a while only family members wearing masks could come in my room. When my father had cancer, at the time of his death, he had an infection that is resistant to most antibiotics so anyone visiting him had to fully gown up so as net to spread the virus (reverse isolations). So I totally understand your concern for your father. It does sound like your brother is a caring person. Maybe you can talk to him... not really telling him what to do but telling him about YOUR concern for your father's health. I am sure he will hear you and follow your example Smile

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat · Posted: Mon Jun 09, 2008 7:43 pm Post subject: Re: Issues and more Issues

Dear Kristi

I am so pleased to hear your Aunt has offered some financial help to pay for a cleaner. This is great news, & will be a blessing for you.

I agree with Jim on the face masks, you can have them on hand to offer to anyone who might be suffering from a virus, sore throat, etc. You will have to spell it out to some people though. As to all the visitors, you will need to reign this in by contacting friends & family & explain that it is becoming too overwhelming for your Dad & ask these people if they could phone first to see if it's convenient for your folks to have visitors. Be strong & consistent & family / friends will abide.

I wanted to drive to my Bro's yesterday to visit but as my Son & I have a cold I chose to stay home & not spread my infection around to him or his wife. Your brother needs to be more considerate of your Mum & Dad.

Thinking of you,
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

simplyklb · Posted: Mon Jun 09, 2008 8:27 pm Post subject: Re: Issues and more Issues

I told Mom that there is going to be hand sanitizer on the hall tree in the entry way. I want people to get in the habit of using it when they come in the house. I will get a box of masks and keep it on the shelf below the hall tree.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

simplyklb · Posted: Mon Jun 09, 2008 8:28 pm Post subject: Re: Issues and more Issues

I think that the weekend visitors need to be considerate. I have a great family but just too much at times. Smile

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

brainman · Posted: Tue Jun 10, 2008 6:59 am Post subject: Re: Issues and more Issues

Kisti, all wonderful and doable ideas. Your will do a little public health education then Wink

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1402

Gosh Kristi --- I just posted to your other topic and now see that you are all over this "catching a bug with low WBC" thing.

I also had my son keep hand sanitizer in his area of the house and he used it when coming into communal areas. I also had one by the door and in the car. When my son would get sick, I'd run around multiple times a day with chlorox wipes (or some type of wipe) and hit every light switch, door knob, faucet, toilet handle, refridge, microwave, telephone, etc., etc.

You need to go nuts on their butts (hey-- that rhymes!) to get the point across of how dangerous it is for your parents to pick up some random cootie. I had the same feeling as you -- I was darned sure that I wasn't going to lose my husband due to some careless person. I did harp on my husband to keep his hands off of his face and wash them frequently.

I'm sure you don't let your Dad open any doors or push elevator buttons at the doctor's office either. LOL I know it sounds crazy, but wherever we went, I thought ahead to make sure my husband wouldn't be compromised.

We also put absolute limits on visitors or phone calls. This cancer isn't about anyone else but your mom and dad and sometimes they aren't up for visits. There has to be some give and take because your sibs do want to see them, but if your Dad is feeling poorly, that's tough beans for the kids that day or that weekend.

Sounds like you're getting the hang of this thing quite well. Sorry that you've ever had to learn this stuff in the first place and sometimes you have to play the "bad guy". I was lucky and had one of my SIL's as our family contact and she'd run interference for me. I'd keep her updated so she could share the info and know whether my husband was up for a visit or a phone call. This may be a way for your sibs to help share the load by assigning one of them this type of duty.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

simplyklb · Posted: Wed Jun 11, 2008 12:20 am Post subject: Re: Issues and more Issues

I hate playing the bad guy but someone has to do it! I think that we have Clorox wipes around here too somewhere.

My sibs truly just do not get it at all... My middle brother just gave me the argument that "I work." when I asked him to handle the disability tag while I got my ID renewed. Well if he is going to be a baby about it, I will ask a friend to help. None of my brothers really respected me when I work (used to complain about my jobs all the time) and now they really don't. Nice. I am going to ask my mom not to give my brothers any info anymore since they just want to sit back and judge. I guess going to nearly every dr's appt. and deciphering all the medical stuff and keep tracking of things here at home all day long are not enough for them. They don't see that their sister is totally overwhelmed. Well anyway I am glad that there are people on the outside that are looking in after me. There's a lot of you here and my friends and extended family members. I appreciate it!

Thanks,
Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

simplyklb · Posted: Fri Jun 13, 2008 7:00 pm Post subject: Re: Issues and more Issues

Real nice... I can't even get someone to go get a case of free nutrition for my folks and they work a mile down the road from the organization. I am sooo sick of all of this. If it were not for outsiders, I would walk away and never look back. If it were not for my best friend, I don't know what I would do. She has gone way beyond the call of duty and she is not part of my family.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

brainman · Posted: Sat Jun 14, 2008 12:51 pm Post subject: Re: Issues and more Issues

Kisti, it does sound like you are overwhelmed!! It is not hard to get there when you are the care provider for sick family members. I got that way too. I would write emails to my siblings telling them who sick Dad was, one of them would come and miraculously, Dad would rebound. They would go home, write emails to each other saying how well Dad was doing Rolling Eyes

. Dad, of course, would go downhill just as soon as they walked out the door. When they did come, they still expected my to do a lot. I do not think anyone but me ever helped Dad take a bath or go to the bathroom. Of course, while they were here, Dad did not need help with anything. It was very frustrating. I finally did two things: First, I confronted my father. He just told me that he did not want to be a burden on THEM because they where not there all the time. Apparently, it never occurred to him how hard this was on me. Second, when one of my siblings did come to visit, I WOULD just walk away... even if it was just a trip to the mall, eat out, and/or go to a movie.

Our situations are not exactly the same. What is the same is that we, as care givers, need to find ways to care for ourselves... even if that means walking away from our responsibilities for a while.

For people like you and me who hate with a passion confrontation getting away can be hard because someone does have to be there to care for your parents while you are out. This might be a way for your sibling to help. I they cannot or will not come, tell them they need to pay for a sitter to come be with your parents will you are gone. I just had to be blunt with my siblings saying: "I will be out on May 15 through 17 and someone need to come or pay for someone to be here." Being acceptive like that took a lot of inner strength but it did take a lot of pressure off of me.

What worked for me may not work for you. You are in my thoughts and prayers as you try to find a way to care for your parents AND for yourself.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

simplyklb · Posted: Sat Jun 14, 2008 2:06 pm Post subject: Re: Issues and more Issues

Yes Jim I am going to have to be more assertive. Smile

Palliative care is comong tomorrow. I will speak with the nurse about what services are available. Silly Medicare rules. Smile

Dad has to be housebound when the nurse comes. He is going to my niece's wedding later. Smile

Dad does not go anywhere but to medical appts.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

brainman · Posted: Sat Jun 14, 2008 2:24 pm Post subject: Re: Issues and more Issues

Silly indeed Razz

. But I think they will make an exception for a wedding... especially if it is local.

Hospice may not have a staff member to sit with your father for more than an hour but they can help you locate someone who will... at least for long enough for you to run way for a while Laughing

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

simplyklb · Posted: Sat Jun 14, 2008 3:41 pm Post subject: Re: Issues and more Issues

That's why they are coming tomorrow. My dad is not on hospice... Just getting some palliative care. I want to know what resources are available to me and my family.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

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