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My dad doesn't have long + everything else is falling apart


Guest JanEK

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Guest JanEK

Hello everyone,

My dad moved in with my husband and me 5 weeks ago, after he was in the hospital a week for treatment of pleural effusion. Feels like we've been seeing doctors every day, and he's gotten dramatically weaker.

He's just been diagnosed with NSCLC, stage 3B or 4, and has declined palliative chemo. He wants to spend his final time here with me, which I also want too.

Hospice is coming Tuesday to discuss our needs.

I feel horrifically overloaded: I have one sibling who is emotionally unstable and no help, my husband's business is in freefall and our home is in jeopardy, and I've been completely unable to do my work (self-employed). Dad has also asked me to get his own house on the market and for sale, which has required lots of work.

In short, I feel quite alone, the sky really is falling, and my dad has only me to depend on. I can't fall apart, not yet.

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You won't fall apart. In hindsight, you will wonder why you didn't... But somehow you will find the strength to do what needs doing.

My best advice right now is this: Don't be a perfectionist. Do what you can and be gentle with yourself.

I know there isn't anyone in your main body of family than can help, but if you have church support, neighbors nearby, or ANYONE that you can drag off the street and say--I need help, it's a good thing. Little things like--could you run the dishwasher for me? Or... Could you bring over dinner--even if it's take out? See if you can delegate some of those little responsibilities to some friends and acquaintences who might be willing to lend a hand.

(((((hugs))))) to you. This IS hard. But you will find a way to keep putting one foot in front of the other until you get to a point where you can crumble.

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You have every right to feel overwhelmed, you are. It is a scary and confusing time. It is hard to tell what has to be done first.

All you can do is to do what you can. One thing you can do is ask for help.

You will get through to the other side of this mess.

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Jan:

I first want to say welcome here. Dealing with this disease as a caregiver with no support is very, very hard and overwhelming at first, BUT eventually a new normal will set in to where gradually the pieces that are in a free fall right now will settle into place. Some of those places things settle into may still seem awkward, but somehow they just seem to work out.

Be sure to discuss all your concerns that you have posted here and your overall situation with your hospice organization on Tuesday -- hospice is there to support BOTH the patient AND the caregiver(s); while they don't do 24/7 support, they do have resources to offer you. They should also be able to point you to other resources in your community that could help as well.

Might help to put together a personal "wish list" of sorts right now (write it all down): if you could have help for this, this, this, and this..(whatever the "this-es" are)... it would really help you. With a list like that, it becomes much easier for people like hospice, friends, neighbors, church members, etc. to find what they CAN help you with to free you up enough to not be so overloaded.

I had absolutely no support in this journey as a self-employed caregiver either (no family, couldn't work, etc.) -- it was a challenging and frustrating road; once I did the "wish list," it became so much easier to find at least enough help to squeak through it. For some reason, it just seemed impossible for me to come up with things that would help me out on the spot when folks offered to help me, until I had put this kind of think time into it and had a list together.

Hope this helps,

Linda

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:oops: Jan, I'm a new member and haven't introduced myself yet, as I don't have all of the stats. on my sisters SCLC. But I was a primary caregiver for my mother in law, who had to move in with hubby & I after they found out she had cancer of the liver, and spread to the bones and brain. Hospice was a very big help. Please, please talk to them. In our area Hospice has a social worker, when she came to the house, I wasn't aware that I needed anymore help, especially for myself, until after we were done talking, I was able to let go of my emotions and cry for a good while. When I calmed down, I told her how good she was doing her job.

They basically told me to ask for help when I needed it. Yes caregivers do deserve a break, and yes someone else is capable of giving the parent the needed medication.

All in all, they were telling me to reach out and get the help needed so I could continue to take care of my mother in law until her final journey.

Please take care of yourself! I pray for peace for everyone involved.

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Jan,

First like others have said, talk with hospice. They can offer assistance. Second, I was so surprised at how many offered help to me - and since I relocated after my diagnosis, these were not friends. I have had the landscapr people offer to drive me anytime I need a ride. And several neighbors have just helped when they see it's needed.

Church is a good avenue. Also, do you have power of atty for the home sale? And medical directive?

Those would be important documents. Also see what home nursing care you can have to assist even if its a few days a week.

Mary

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Welcome Jan,

I'm so sorry you have all of these things happening to you, and at once!

My only advice is to try and get some help. Hospice will be a great help- ask them lots of questions and voice all your concerns. Enlist your relatives and friends who can help as well with everyday things, chores, visits, etc....

And try to enjoy all the good moments with your dad. I am sending my prayers for your family and positive thoughts that you make many wonderful memories for a long long time to come.

Keep us updated ok?

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Hi -

I can't add much to the great advice you have gotten so far, except to add my two cents -- hospice should help a lot. They have been through every situation and are armed with medical and emotional help.

I'll be thinking about you guys tonight. You will make it through this. Know that taking care of your dad in his last days is something you will never, ever regret doing. I was four months pregnant when my mom was diagnosed. I moved from California to Utah to be with her, had my baby there, uprooted my whole life. YET IT WAS SO VERY WORTH IT. This time is so very precious.

Love to you all,

Holly

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I don't have much more to add, except my support.

Please remember to take care of YOURSELF while you are taking care of everyone else! you will be no good to anyone if you break down from exhaustion. I found that other people in my life (friends from church, school, etc) WANTED to help, but were waiting for me to ask.

You are among friends here! I pray for strength and peace for you and your dad.

:) Kelly

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Guest JanEK

Thank you everyone, for your kind comments and thoughts. After I talk with hospice and know how much support they can give, I'll know what else I need to find help for.

Dad's gotten so much weaker, he can't be left alone in the house.

JanEK

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Jan, I am so very sorry you are dealing with all of this. I will be saying prayers for both you and your Dad. I think you will feel much better after you speak with Hospice. They are a great support system for most. In addition to nurses and aides, they even have volunteers who will just come in and sit with your Dad so you can get some chores done or run errands. Please don't be shy about asking or accepting help right now. Often, people will say "is there anything I can do" because they really do want to help. When they ask, let them know what you need. Often, people don't do more just because they don't know what you need and don't want to "push in."

Please let us know how things are going.

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Much like Holly, I elected to effectively "uproot" myself and stayed in Arizona with my Dad. And I too do not regret one single moment of it! Cherish this time -- the memories will be bittersweet in some ways, but they will be priceless!

Treebywater's advice of not being a perfectionist is a hard one to do...but one I found to be essential. I did not clean my house for almot three months -- GASP!, because I was not home more than a day or two here and there. But you know what ..nobody but me cared and it was still there when I got home.

I know how hard this can be emotionally, physically, and financially. Some days it will seem very overwhelming but just when you think you can not go on..somehow YOU WILL! Try to allow yourself the a few mintues each day to just absorb and emotionally deal with things as they come. I remember when we got to this stage, I too felt VERY overwhelmed (mostly by the sheer emotion of it all).

It is so hard to love so deeply and hurt so much, knowing all that you stand to loose! I will be thinking of you and your Dad as the days pass. I know that hospice will help you find comfort and peace in the precious days that are ahead of you.

God Bless you and Dad!

Cindy

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Jan,

I know how overwhelming all of this can be. Try and take one day at a time and cherish the moments you can with your Dad. I also changed my life completly for the 18 months my Dad was ill, although I have four brothers,I was responsible for everything. I have to say although there were days I could hardly cope, there were moments I will be eternally grateful for. I also had my Dad's house to renivate, but I was able to put that aside until now. I am currently doing all of that and will soon have it on the market. It is so much to deal with, I had to put it aside and focus on his care and quality of life. Please know you are not alone, many prayers being sent to you,your family, and your Dad

love, NancyT

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Jan,

We know you are much stronger than you give yourself credit for. Although you may not believe it at this moment, you are. Right now you are living like alot of us, one moment at a time, that is what you have to do. So please make sure that you take care of yourself too, make the most out of hospice not only for your dad but for you and your family as well. Please know that we are here for you whenever you need us. Prayers for your dad and you.

Grace

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That is alot of work, I'm tired just reading it all. I hope the best for you and your family. My only advise is remember to do one thing at a time if you can swing it. And make time for yourself to recoup, you'll need your rest as will everyone else will too. Ask and take the help that is available to you...realitor included.....your only one person, you can't do everything alone.

Good luck

Tammy

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(((Jan)))

I really don't have anything to add except that we are here for you and you will be ok!

I like what someone said that you'll look back and wonder why you didn't fall apart.

Take care of you!! Prayers being said for you!

Kelly :D

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Guest JanEK

Hi everyone,

Hospice came yesterday and not a moment too soon. I'm SO impressed with their organization--we've had two nurse visits, major medical equipment rushed to us, every prescription that could possibly help my dad's comfort, and the most wonderful male CNA came to give my dad a sponge bath, etc. and will come 3x a week.

My father's condition has taken a very steep nosedive and he's now bedridden. I'm spending the nights in his room to help him as needed, and to give my husband some rest. The last two nights, we were up 5 or 6 times because my dad kept staggering out of bed, incontinent, disoriented, resisting us verbally and physically, tangled in his clothing. So upsetting for him. But now he's clean, calm, in a hospital-style gown, with different meds and a hospital bed. Phew.

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Hi Jan,

That has to be such a relief for you to know that you now have help. They are such a wonderful, caring organization, I don't know what we would do without them.

Prayers sent to you and your family for strength.

We are always here for you 24/7. Please keep us posted. Vent anytime.

I am so sorry for all you are going through.

Maryanne

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