Life, Hospice and the in Between

[hopefuldoctor]

On Monday, my father after a 4 month battle with Stage IV NSCLC was told that they could not continue treatment. He is weak, tired, and frail.

I'm scared to go on with my own life, I'm a student who is going to grad school 2 days a week and am petrified of leaving my father with a HHA.

They will start hospice next week, but does that mean he has to die? I mean I could be optimistic. I have accepted the possibility of death...

The big problem started about a month ago, when he just wasn't himself. He was confused, etc, didn't want to eat. Finally he is eating, but I think my anxiety and stress has carried to him and he is being affected by it. I lose it sometimes and yell at him, because i'm the only caregiver...is this normal?

*sigh..

Is it possible to feel alone when surrounded by hundreds?

[RandyW]

Don't yell at him. THis will not be good or easy for either one of you. THis is a team battle and you just got a great team here. YOu need to talk to someone first like a clergy or member of Hospice. THey can be great or Bad. You never know. Some have had good experiences per saay with hospice others Bad. I never had to use hospice as my wife passed in hospital one night. you will get more responses in time.IS tehre Clergy or someone you can talk to about all this? Yu have to take care of yourself in order to help Dad. Sending Prayers and If we can help in any way just ask. We will do as much as we can to help you both. If you just want to write and read adn RAnt as I call it we are here to read and support. Let us know. Sending Prayers for YOu and Family

[Linda661]

It's normal to feel what you are feeling and going through. I too was the only caregiver to my mom and had literally no one else to help me. And, yes, you are alone among hundreds because you still carry the responsibility for seeing that your dad's needs are met properly, even if there are HHAs around. HHAs are no different than you or I as family caregivers and they do need to be monitored in my experience. But those folks are gonna' be able to help both you and your dad bunches and alleviate some portion of the physical caregiving burden for you. Just ask to speak with/interview the HHAs who will be assigned to your dad -- hospice is there to suppport both the patient and the family: you should be able to request different HHAs if you or your dad are not comfortable with whose coming around (that goes for anyone on the hospice team).

There is loads of info. on hospice in the Path Less Travelled forum that you might want to take a look at -- it even includes what to do if you are unhappy with the hospice experience.

When you feel like yelling at your dad, do "walk away" in that moment to calm yourself and do find an outside source to vent on rather than your dad -- I did that all the time (did a lot of it here too ) -- believe me, I know how hard it is to not react in the moment, especially with confusion and not-so-swell personality things coming at you from your family member...know that it's the disease speaking, not them, and they can't help what it's doing to them.

What I did was lean on my community social workers to teach me how to handle those kinds of situations before I ended up doing the same thing you're doing. Your hospice team will have a social worker available to you if you don't have one now.

Linda

[TamHol]

Hi Hopeful,

I can understand your frustration and world wind of emotions ... but try to walk away when he aggrivates you. It's hard especially given the topic, timing, where you are etc .... do what you can. Get yourself the councilling or a way to vent outside the home jogging, walking, or even standing in the backyard screaming at the top of your lungs. Maybe this will help you to endure more than you have up to this point. It's all a horrible time ... I wish you luck and comfort in the time to come.

Tammy

[Nick C]

It is stressful.

But when you are upset, know that you are doing everything for your dad that you can.

Hospice does not mean you have given up...it is not a death sentence. It is the preparation for a possibility. And to be prepared is a showing of love.

[Mskim]

I am so sorry. It is a difficult thing to accept that the time has come to call Hospice.

I can see how it would be difficult to leave your dad and near impossible to concentrate on school.

You are

I wish I had some wise words, but mostly I want to say, like everyone here, walk away when the anger sets in, and try if you can, to just sit and enjoy each other. Even if it is quiet and not a conversation. Some of the best times I had with my mom and one that were calming for both of us was just sitting. Maybe when anger sets in you can say hey dad... could you tell me some things about when you were a kid? One thing I know that distracted mom from what was going on was daydreaming about life when it was simple. A life that didn't involve drugs and doctors and hospice and counting calories.

I know it is scary, I know we are not there for you in person but we are here to listen anytime.

I pray that you find some sweet moments to help you through this time.

[ShariGillespie]

I am so sorry about your Father. I just recently went through that with my Mother. As much as I'm sure your Father wants to fight to survive their poor bodies just can't take anymore. I am still having difficulty accepting it even though I know my Mother is free from pain. You feel as much as you need to and I understand the anger. As everyone said walk away and regroup. It is a terrible time, but try and hold his hand and keep him comfortable.[/img]