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:

I'm still thinking of you too, Holly!!!

So far so good. There were a few roadblocks (no bags for the feeding pump, no med list from the nursing home, the first pump didn't work, etc.), but we got those worked out today.

I'm becoming a pro at crushing up pills and dissolving them in water to put them through the tube. I also managed to set up the new pump, prime it and hook her up for feeding all by myself reading the instructions because the nurse was gone by the time they brought a functional pump.

Tomorrow, she has to go back to the hospital to have the PEG tube looked at because it is leaking. They are also going to do a head CT to check on the swelling by her right ear to see if it is an infection or tumor growth.

She is confused by the nurses being here. She can't wrap her mind around the fact that she is in my home but it feels like a hospital part of the time, too. She knows she is dying now, though. She kept forgetting before, but I guess having hospice makes it real. She said she wished that we could just put people to sleep like we can with animals. She said it is stupid to do do all this crap and just wait to die. She is right, I think.

So far, hospice has been a good experience. They are taking care of everything that I want them to. I think it's going to be OK. I hope so.

What you are doing is so Wonderful! I would Never trade the last minutes I had with my grandfather. I held his hand the entire evening he passed.

If you think about what would make YOU most secure if it were you in that bed....then the rest will follow, very naturally, lovingly, & peaceful. :grouphug:

I pray for your family & for the love of all those around you to help you thru this time.

Grandma
 

:grouphug: I THINK YOU WILL HANDLE IT FINE. YOUR BRINGING HER HOME .THATS THE FIRST STEP. YOU, SHOULD TO BE A LOVEING FAMILY. THATS WHAT MATTERS. OUR PRAYS ARE WITH YOU AND YOURS GOD BLESS KIMMIE

holly,

i didn't know about your grandmother, i'm sorry.
blessings to you and your family.
and prayers for your grandmother's peaceful passing.

:hug::hug::hug::hug::hug:
:hug::hug:Holly:hug::hug:
:hug::hug::hug::hug::hug:

Everything is really going OK. I am so pleasantly surprised. This hospice organization is really amazing. Anything we need / want to help her is delivered pronto. They really seem to be very adept at getting action, too. They were able to get her a pain med that actually works for her. They offer so many services for us that I can't believe it.

When Grandma had to get to the hospital by 9AM to get her feeding tube changed (the old one was leaking), they arranged to have an aide here by 6 AM to get her cleaned up and dressed and an ambulance here by 8AM to transport her to the hospital (because my house is really not wheelchair accessible, they have to take her out on a stretcher).

They are here to support us, too. They have respite care if we need it. They have bereavement counseling if we want it. They are also sending me out a book to help me talk to the boys about it.

Yesterday, the aide that comes out every day even gave Grandma a manicure. She also said that she will change Grandma's sheets once a week. Some of this stuff is so unexpected. The social worker said that when she passes, we don't even have to worry about calling 911 or the funeral home, just call them and they take care of all of that. She also said that they would call the Red Cross to get my brother back from Iraq. I was just blown away.

Now, if I could just find some energy to get stuff done around the house now that I'm home more....

holly, as time goes by you will find out that there are even more surprises from Hospice!

There were volunteers (older married couple) that visited my Dad. He Loved the attention he got from the lady, in particular. She held his hand while she talked to him, and kissed him on the forehead each time as she left.

That couple visited about half a dozen terminally ill patients throughout the county every few days. And there were others like them who did the same thing on a volunteer basis.

Bless your heart for caring for your dear Grandmother. I hope you find some of that elusive energy. :hug:

I am so happy everything is working out so well.

Give them the name of the mortuary you have chosen too. They will make all the calls.

Just enjoy Grandma. Keep creating memeories.

:hug:

They asked for the mortuary info and that is when they told me they would handle all of that. I am so blessed that Grandma already planned her final arrangements and prepaid it. So I do not have much to do in that regard. We transferred all that info to the funeral home here so everything is all set up.

:hug: Holly :hug:

I'm glad you're finding that Hospice is a good thing. I honestly don't know what we would have done without them. God bless those people who do that type of work every day.....they have a special calling for it.

I'm praying for you and your family as you take this journey with your Grandmother. I was with my Dad in hospice when he passed and they made it a peaceful, calm experience for all of us. I wasn't ready (who ever is?) but I knew he was and that's all that mattered.

Holly, Your grandmother reminds me of my FIL. But he has no place to go.
Bless you & yours for what you are doing.

hospice is amazing holly.
best to you and your family.
i'm glad they found a pain med that works for her.

I'm kind of melting down today. She is so much slower every day. What am I going to do when she's gone? She's my last older relative. My Grandpa's been gone since 1994, my mom died in 2006 (she was an only child), I never knew my biological father or his family. It will be just my brother and me left from my original family. I never thought I would have so little family left at age 39.

I'm sorry, it's just really hitting me today that I'm really going to lose her. I'm so confused because I really do want her to go and be at peace. I selfishly want to keep her, though.

Hi Holly:

Just happened to come across this thread.
Believe me, what you are doing for your beloved Grandma, well, let me assure you, you are an angel. And she knows this and she loves you.

You will learn to let go, when the time comes. For now, just hold her hand, and speak to her. She'll hear you and she'll be comforted.

I don't know if this is all on you, or do other members of your immediate household, speak to her also?? I know she probably does not respond, but this is a great learning tool for others.

Often, people don't know what happens during this time, (or they don't want to know). People shut down, or walk away, or just plain turn away.

You didn't do that and for that here's a hug.:hug:

I've been to many homes where there was hospice. And in my immediate family, my dad (when he lived in Florida), he had hospice. I will never forget all those lovely people, tapping on his hospital door and saying "Frank, we're here, how are you today?" and my dad's face would light up.

They came every day. In fact, I never got a moment alone with him, he was so busy talking to this gal, or that guy. My father loved all the attention and he actually thrived off of it. They had given him 18 months to live and he lived one more year (I believe this was because of all the good care he got and all those hospice people).

I learned much from that experience.

I learned that we each have a role on this earth. Some...more than others.

You are doing a good thing my dear.

You didn't have to.....you chose to.

Good job my dear.

Blessings,

Melody

Hospice are angels!

Holly...:hug::hug::hug::hug:

Hang in there Holly. Grandma is proud of you.

Holly sorry if this makes you cry, just wanted you to know you have friends here who care for you:hug: I debated making this private or public deb said public so send hate mail to her:)

girl that last post of yours got me all teary eyed, it isnt easy, it never is, losing someone you love so much, the love is what makes it so much harder. but she will always be there in your heart along with mom and Grandpa. My dad is in my heart and i talk to him often, yes this may sound odd to some folks but he answers me, helps guide me. Grandma has had a good life and a wonderful friend in you, she is truly blessed to have you in her life, as are your friends. you are a wonderful caring loving person, thats what makes it harder. its those who have a heart that the loss of loved ones hit hardest, you have many friends here and a lot of us would squeeze you so hard you would need a body cast. You keep loving grandma now and always, and grandma shall never leave your heart

how can we let go, when our heart says no
how can we try, when deep inside we want to cry
how can this be, when its her face i want to always see
how can i let go, when being with her is all i know
how can i say say goodbye, and trying not to cry
how can I see, from her pains she is free
how can i say i miss you so, and please dont go
how can i say i shall be blue, and grandma I love you

hope i didnt goof by making this public, sorry if i did:hug: all of debbies and my prayers and thoughts

You didn't goof, Frank. That was beautiful. It did make me cry, but that's OK. Don't you know that your wife is always right?? That is what I tell my DH.

I guess now you know why something as stupid as being kidnapped over on FB is so amusing to me right now. I like the diversion of it. Now, if only I could actually be kidnapped and taken somewhere in real life.....

Hey Holly, had not been on this thread, I think I was shy, with my sister gone, and now my father fighting the cancer fight... just a bit emotional for me... I am emotional even when there is not anything to be emotional about!!

I am thinking of you, I am hugging you tight, :hug:!! we are here for you, and tears are a GOOD thing for you, a release, no matter how many times you tear up..that is Aok!!

I am glad you have her there, good for you for doing that, you are wonderful for that!! Hospice is a great service glad you have that too.

Frank made me cry too, and glad he did the poem publicly, Is he just the greatest, although we keep having to remind him his wife is always right!!

FRANK WIVES ARE ALWAYS ALWAYS RIGHT!!!! hugss

hugss to you holly, sorry it took me a few days to get on here and type, hugssssss,sarah (another one here for you when you need hugsss)

I'm freaking out. She is completely out of her mind right now. She is not making any sense, she is talking to people who aren't there (my Grandpa, her cousin), seeing things, can't remember that she is immobile and forgets that she has a catheter.

She keeps telling me over and over that she has to get up to pee and I keep reminding her that she has a catheter. This is every five minutes! She has had a catheter for about 2 months now, but suddenly she doesn't know.

The scariest part is that she gets mad at me because I don't understand what she is looking for. Is she going to die thinking I'm mean because I won't take her to the bathroom to pee? This is by far the most disturbing part of this. It's just not fair for someone to suffer so much. I had to leave the room because I just couldn't take it.

oh Holly. I am so very touched by what you have done and what you are doing. Your love for your grandmother is definitely what will get you through this "long goodbye." It is a gift to her.:hug:

She loves you as much as you love her.

Hon. She's probably having a series of mini-strokes right now. And no, please don't think you are being mean, and I'm sure, that if she were in her right mind, she would know that you love her.

You have to be strong and realize that her mind is going. She sounds a great deal like the 90 year old who used to live across the street from me. She would be on the porch in her wheelchair and she would look up and have conversations with the air. We later found out that she had a string of mini-strokes.

Is there a professional on her case? A social worker, or a case manager?? or SOMEONE WHO CAN GIVE YOU SOME ANSWERS.

It's a lot to have on your shoulders.

Keep us informed okay? We are here for you.

Melody

Well said, Dar, and ditto with my dad.

Holly, she knows the truth in her heart and it will carry on within her and within you. I'm thankful that she has you looking out for her. :hug:

She is definately going to remember what a wonderful, loving grandaughter
you are....illness doesnt change that.

:hug::hug::hug: to you Holly, it isnt easy but you are doing what you
have to do because you love her so very much:hug::hug::hug:

:hug: Holly :hug: I hope you can get someone from Hospice to come over and give you a hand. I went through much the same thing with my Dad....but he was in the hospice facility and I had help within minutes if I needed it. They were wonderful and explained things to me about the final stages of life that I had never known.

Your Grandma will not recall these days of confusion. She doesn't think you are being mean. Please don't dwell on that....believe me she knows who has been there for her. And that's you.

You're both in my prayers. This is such a difficult thing to go through but I'm so thankful that you are there for her. :hug:

Thanks, everyone. :grouphug:

It was just so overwhelming last night. I don't mind so much her talking to people who aren't there, but the part about begging me to take her to the bathroom was too much. Maybe I will call the hospice social worker.

It's funny, when she was talking to my Grandpa, I was hoping that he was really there. It made me feel kind of peaceful to think that Grandpa could be there talking to her.

:hug::hug::hug::hug:

Holly, I can't add much that hasn't already been said.

Pain meds can cause this too. My brother was on morphine. At the higher doses, he was not making much sense. It's a fine line. Takes so much to get rid of pain, but a bit more and he was out there.

Hang in there sweets. :hug:

Hang in there, I recall with my sister there was a few times, where yes she was lost and confused... and that goes with the situation. She knows you are there for her, you are doing wonderful hun...

Hey, I feel maybe your grandfather is talking back to her, you never know... and that does seem peaceful doesnt it?? they are close, and you are close with them....keep the spirit up hun... you are strong!!

hugsss and god bless you, sarah

She was very lucid yesterday. Even to the point where she knew she had been seeing things. I told her next time she sees Grandpa to please tell him I miss him. She liked that one! I asked her how he looked and she said he looked good.

I know it sounds weird, but I really hope he is really there with her. I am a little jealous, though, if he is there that I can't see him, too. I'd really love to see him again. I still wear his wedding ring on a chain every day. After he passed, I had it bent into a heart shape and had his name and 1913 - 1994 engraved on the inside.

This morning, she asked me "where did Al go?" (Al is my Grandpa). I told her he died about 15 years ago and she doesn't remember that now. She got really confused about that - it was pretty obvious to me that she thought he had just been in the room. She hadn't even had any pain meds since last night, either.

I told her it was OK that it was because of the cancer and being near the end of life, that she was seeing him more either because he was actually there for her or because her memories of him were becoming stronger. She seemed reassured by that.