I'm Scared - What am I getting into??
 

I am bringing my Grandma home with hospice on Monday.

Many of you know the story, but for those that don't...

In January, she was dx'd with small cell lung cancer AND she also fell and broke her hip and wrist. We did a trial of chemo for one course and she did not respond well. In fact, she really went downhill. She has been in the hospital for over 30 days since January, then went to a long term acute care hospital for 21 days and has been in skilled nursing for the rest of the time.

She cannot walk and is not even strong enough to sit for very long. She has lost the ability to swallow and now has a PEG tube for enteral feeding. Her electrolytes and hemoglobin continually go out of whack.

We made the decision together a couple weeks ago while meeting with the oncologist to discontinue chemo. She said she doesn't want to live like this. I can't say I blame her. She hates being in the nursing home so it's time to bring her home.

I am terrified about how I'm going to handle this and how my kids will take it, but I really feel like this is the right thing to do.

I am excited in one way to be home. I have been running non-stop for 2-1/2 months between work, kids, the house, and trying to see her in whatever facility at least once a day. Now, we will just be home. Maybe I can even get my house clean again (I can at least hope)!

I don't know how much longer she will be with me, but I really hope this can be a positive experience (as much as that is possible).

:hug:

Holly, have you already sat down with the hospice team that will be coming to your home?

That is really important. You need to really let them know what you need from them. If you want you role to not be of a caretaker, then you need to tell them and be sure they understand that. Or you won't get as mich help as you want.

We had hospice with my brother. I wasn't the one who talked to them. My parents did. HUGE mistake. They befriended the lady and thought she was so pretty and sweet. She sat and had coffe and snacks with my parents.

We ended up with zero help. They never did a thing for my brother. My sisters and I did. Everything.

The time I had with him was special. My role wasn't a nurse. That isn't what he wanted from me, but he did from 2 of my sisters. I wish they hadn't been put in that position.

It can be a beautiful and not scary experience for the whole family. The circle of life.

:hug:

Expectations of who does what...
 

are essential to everyone's well-being... mainly YOURS! It IS a contract of sorts...but one with lots of limits.
Also ask the hospice folks about what counseling is available to help your kids understand this all. Some have good resources, others not so good. I hope you find good ones!
My heart is with you on this one. It's not gonna be easy whatever the choices of what you do or don't do. But, the trying and caring are the more important things in the end. You also have to be very careful about preserving yourself! Sure, easier said than done? But essential to YOU!
Hugs and hope always! :hug:'s - j

It will be hard but at the same time it will be the most wonderful experience you have. I sat with my friend who was on hospise and I wouldn't take it back for anything, ever. I was the last person she spoke to and the last person she really heard. In her final hours she was so agitated, you could tell something was bothering her even though she was in a semi coma. She was so concerned about her girls and if they would be OK. The last words I spoke to her was "Lori, it's OK to let go. Your girls will be OK, I promise. I love you." She let out the loudest sigh I ever heard and went to sleep. She passed later that evening.

:hug:

PS: Definately make sure Hospice knows what you expect. My uncle was with Hospice in his final days and he was seen once a day only. My aunt couldn't or wouldn't change his diaper when he was wet or bathe him. I don't know why, maybe she just couldn't handle it. My mom went to see him before he passed and got Hospice to get in there to care for him more. Just let them know what you expect and what you want her last days jere to be like. They should understand and be compassionate about it. :hug:

Thanks for the advice guys. The hospice people are going to come out and sit with us Monday after they get Grandma transported home. At that time, we will make up a care plan. I've already made it clear to them that we need more help.

It isn't like some people starting with hospice while the patient is still functional. We are starting with her being basically bedridden and being unable to care for herself at all. Toss in there the feeding tube and it is really a pretty overwhelming thing to grasp.

They do a lot of counseling. They know I am interested in that for the kids. Also, my pastor is one of their chaplains, so I know it is a good organization. He used the same hospice for his mother who recently passed away from Alzheimer's. He has been with us through this every step of the way, so he is there for us, too.

I can't overthink this because I will tend to get ahead of myself. So, I'm just going to leave it to God and trust that He will get us through it.

Hey Holly! Hospice is an amazing, extraordinary bunch of angels sent to help at a very hard part of life. We had Hospice for both of my parents; although Mother never did leave the hospital. We, w/Hospice's help, kept my Father home as long as we could, but it came to a point where we became defeated by the illness and he had to go to the NH.

All I can say, is we tried as hard as we could to keep him home to the end, but it just got to be too much for my Mother, sister and I.

I don't regret trying to care for Dad and I know in my heart, that at the end, he was at peace even in the NH, as we were all there w/him. Good luck Holly and I will keep Grandma and you and your family in my prayers. But, please take care of yourself, too~~ G'ma would want you to!!

:hug: Holly :hug: Your grandmother is so fortunate to have you. I know she knows that.

Hospice was a wonderful thing for us when my Dad was there. He was in the actual Hospice facility, though. It was like home. They made us so comfortable and took such amazing care of him.

You're in my prayers as I know this is a very difficult and stressful period in your life. Like DM said, please take care of yourself, too. Let others help and don't be afraid to ask for (or demand!) help. :hug:

Holly - hugs for you and the whole family. Things have been so stressful, and you've had so many tough decisions to make. You always make the right ones because you go with your heart.

;)

I know that as tough as this will be in some ways, you will make it as possitive an experience as ever anyone could.

:hug:

holly:hug: i agree with others sit down talk to the hospice people. My father was on hospice, here at my home many moons ago. and at the time it was hard, not going to white wash that fact, but i also look back at it and a smile of his memory, invades my face all the time, Dad also was happier being able to be in a familiar surrounding. Feeling scared or overwhelmed is normal also, but talking to hospice should help ease this some, they are wonderful people, all of my prayers and hopes for you and yours and Grandma :hug:

How is it going Holly????? saying prayers for your dear
grandmother.:hug::hug: