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Exhausted and Unsure

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Through my dad's battle with cancer I have been so focused on him and his needs, I guess Im suffering my classic "caregivers syndrome"

Im so physically and emotionally drained. Hospice came in yesterday and yes it was a relief but yet more for me to deal with. More medications, more paperwork, more phone calls, more information. Im hoping at some point it will all level off.

And of course after being told we are entering the final chapter or journey if you will,Making many difficult phone calls to family I can't stand to hear the phone ring. Today, my grandparents are driving in from ohio matter of fact they should be leaving there Right now. This should be a sense of relief right?? Well not exactly..More for me to take care of..They have not seen my dad or me for that matter in over a year. Now My dad is anxious about them coming, and thier reaction to what he has become,

Tomorrow is going to reach even more challenges. It's My Mothers Birthday and also we have an appt for a thoracic consult..which I am dreading..I really don't think it's wise for him to go through any procedures including a stent placement. I think we are looking at more trouble than good. Not only that if he were to go through a procedure, then he gets pulled off hospice temporarily, Being told he has about two months..is it really worth the risks... I don't think so but he is still very strong willed which we all know is essential to compete with this beast...but at the same point all I can do is voice my concerns in the end it's his decision.

We've been battling for 2 years been misdiagnosed uninformed ect. I just don't know where I can pull anymore strength.

Thanks for listening ...any suggestions are welcome

Hope this finds all of you in good health and spirits,
Valerie

Noellesmom
Posts: 1317
Joined: Aug 2010

Call in trusted friends to help with things, Valerie, like going to the grocery store, sitting with your dad while you take a walk, even going to the doctor's with you.

Leveling off...well, I think not so much that as winding down. Once things are in place and running with hospice, a pattern, a rhythm will develop. Try to take comfort in that.

Hugs.

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Noellesmom,

Thank you wow that just doesn't seem to be enough. And the sad fact is...trusted friends hmmm well they have all walked away and into thier lives. They said it's too hard to see what cancer has done to you. When you "get over it" Call me. Or When your dad dies and you are done grieving i'll be here.

I don't imagine I'll ever be done grieving or able to "get over it". That's something I have learned until they walk a mile in the shoes of someone that has been through it, they will never understand.

Compassion-- It has a whole new meaning. I'm just hoping soon I will be able to sleep even two hours would be a blessing at this point

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

When it was brought to me that anything for Patrick would be a salvage to buy time, I knew he was too sick to do anything (rads, chemo) and surgery was out of the question. I knew any of it would hasten the process. Unfortunately, you are in the position of "parent' to your dad now. You are his advocate, yes, but you are also the one who has the help him understand that what he wants and what might be best are two different things. Listen carefully to all arguments, and above all trust your instincts. You're in the best position to help make decisions that affect QUALITY. Forget quantity at this point, and I agree that sidelining hospice, even temporarily, is not a good idea.

As for family coming, I understand that too. It's not that you don't want to see them, but it's more that takes away from your dad and just more stuff to deal with. When my grandparents wanted to come down for Patrick's service I told them no. It was more that I had to deal with that I knew I couldn't. Thankfully, they really didn't want to come anyway so they stayed put at home.

Hospice should have volunteers to help sit with your dad, and you should get a home health aide for a few hours each day. Ask about it, and also see if you local chapter of ACS can help with volunteers to either run errands or help sit with your dad or hang out with you.

Breathe deep hun. Focus on what's important and forget the rest. Not worth the time or energy right now.
Loves,
April

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

April,

From the few communications we have had it seems I connect with you on a very nurturing basis,
It seems that Your Patrick is much like my dad. Almost like mirror images really. I guess Im just feeling so overwhelmed right now with a bit of embarrassment I think it is or maybe my own form of denial Im not quite sure.

I feel like I should be handling things better. But in hindsite I have always put impossible expectations on myself.. I single handedly Put together my mom and dad's second wedding...Doing all the cooking, coordinating,making arrangements, family lodging, cleaning, and even as far as making a 4 tier wedding cake myself . Stayed up 4 days to do all this.

So maybe my limitations are clouded. Anyway fact is my grandparents are already two hours into a 6 hour trip, they are in their late 70's so it's a matter of time we will have to deal with elderly aging and end of life there *the way it's meant to be* so it will do my mom some good to have the support of her parents. Going through this watching my dad i've realized how important that will be for her..

Now to top everything off, Im running around scrubbing floors and windows and all my style on my hands and knees 10 mins ago the phone rings and it's the social worker from hospice wanting to come meet us..at 11 o'clock 20 mins from now...i turned to my dad asking him if he wanted her to come out today *expecting him to say no we'll schedule it next week* No, he says sure! Wow when I think I have him figured out! LOL

So Needless to say the floors are done , im not showered of course but that's nothing new i struggle to find the time to take care of myself now adays..but waiting for the social worker to get here then i'll continue...with my flight of getting everything done..and hopefully getting a shower in the next 4 hours..

I sound like im complaining but im really not. Just time management is not my friend lately. I would do absolutely anything for my dad.

And thank you for validating my thoughts are right and Im not getting delusional or unaccepting to what is best for his care

karenbeth's picture
karenbeth
Posts: 194
Joined: Sep 2010

I think you'll find that when hospice routine kicks in it will be very helpful to you. I felt the same way in the beginning...so many people calling and coming over. But it will level off. And let them help you--don't feel you have to continue to do everything by yourself. I was my husband's primary caregiver and it was such a huge relief to give up a little control over to the hospice people, to let them come in and do their thing. Just to have a home health aide clean and do laundry...one less thing for me to worry about, and I could spend more time with Frank or take a few minutes for myself. Trust me, finding time to take that shower is important.
My thoughts will be with you and your family...
Karen

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hi Valerie
Just wanted to let you know I am thinking of you and praying for all of you. You are doing all the right things. Your dad could not ask for anymore. It is so unfortunate for you that you do not have any friends or family that can help you. If you lived near me, I would definitely help! Hang in there. You know we are always here for you. God bless your dad :)
Tina in Va

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