A Particular Reason for Caregiver Burnout

[Barb73]

I took this from "Bill's Story." I just couldn't write it all over again, so I copied and pasted it.

The reason for the addition of adding December 16 was to give a little prelude to what occurred the following day, December 17.

Things happen, and there are so many that we can never be prepared for no matter how hard we try.

December 16 - Saw the oncologist yesterday, and we spoke of Bill's being removed from hospice to receive some palliative care for the shoulder and/or the neck.

The doctor will be calling the radiologists involved in those treatments. I will call both doctors and hospice today. Will report back later with update.

Thursday evening, December 17, Bill fell backwards down about three steps and landed in the kitchen, hitting his head on the side of the portable dishwasher. Called hospice and 911.

He was sent to the hospital. I stayed behind with the hospice night nurse until our son and daughter-in-law arrived to take me over with them. She noticed that the back of my left hand was quite swollen. I was behind him as he was ascending the stairs, and my hand must have slammed back onto the living room wall when he fell back and swept passed me. She bandaged it to keep the swelling down.

They took a ct scan and there was an area of blood in Bill's brain (had it prior, but smaller) that has grown and may need to be drained.

He was eating, sitting up, and conversing when I left the hospital late yesterday. He doesn't have a room as yet. They are full up. At first, he was labeled ICU but has been downgraded. (That is a good thing.)

Will be going back today with Linda and John. We are expecting snow and want to get there and back before the storm.

I wish there wasn't that prospect of draining. It scares me, and is one more thing that Bill doesn't need on his plate. Hope someone knows what they are doing here. Up until now, it has been "observed," albeit, it was smaller.

Right now, I am alone at home, and trying to take it one step at a time. That is all I can do.

[ginnyde]

Barb, this journey is one scare after another. I remember when Earl fell down half a flight of stairs and slammed into a wall. He hit the wall so hard there was a blue stain on the wall from his shirt. He took a huge gouge out of his arm. Luckily we were on the way for a radiation treatment, so the doctor there took care of his arm. From that time on, I always helped him up and down the steps.

I hope that Bill does not need the blood drained. He is due for some good news. I hope he is home for Christmas and in less pain. He is very lucky to have such a strong and loving advocate.

Be good to yourself.

[Barb73]

Ginny,

Thank you for the response. I needed that more than you will ever know. This is a very lonely "place," this cancer trip.

There could be many people in my life and they are, but none of them understands the fear, the responsibility, the utter "uselessness" feelings that invade the thoughts every single day.

I had my left hand on his pant waist lifting a bit while I was holding onto the right bannister. Somehow, he hurled backwards and went right past my left arm. I don't know how he did that because I am very strong for a woman. The back of my left hand looked twice the size with swelling. It was the nurse who saw it. The force whith which it hit must have been powerful, but you know, I didn't feel a thing.

The thought of putting the bed downstairs makes me feel defeated. It seems to say to me, "Ok, you're on the level before going out the door feet first." Hate that.

Barbara

[fillise]

Barb,

I'm so sorry to hear this news. It just doesn't get any easier does it? Hopefully Bill won't need to have the blood drained and he can come home soon. I wish I could be there to put my arms around you to let you know what both you and Bill are loved.

Susan

[RandyW]

thoughts and prayers and remember that sometimes the hospital is the best place to be!!! Hope all goes well and i tsounds like it is if they are not going to ICU!!!

[paulette3]

Barb,

I'm hoping and praying that Bill will not have to have the drain but if he does I'll also pray that everything will be okay. Sending you hugs [[[[[[[[[barb]]]]]]]]]].

Paulette

[RandyW]

And downstairs is closer than the hospital !!!

[Reynsie48]

((((((Barb))))))

Please hang in there and keep on keeping on, lonely or not, it is what makes you so special to not only Bill but to all of us.

As my counselor would say.......the feet first out the door could come at any time really with or without the cancer journey and you might never have had the chance to see it coming whereas with Bill, I can only imagine how close this monster of a disease has brought the two of you and there are many quality moments you may never have been able to share otherwise.

I will hope that this is a short visit for Bill to the hospital and that he is able to come home and spend a quiet Christmas with you and your family.

It is good to hear that he was eating as you have said so often, that is what Bill does ha ha!

[Kasey]

Oh Barb....gosh, my friend, I just don't know what to say. The snow today is wicked and I am feeling lonely for/with you. I am so worried for Bill, BUT I am also worried about that hand of yours too. I know you know to not neglect yourself through all of this. It is so easy to do, you know.

I hope Bill has gotten a room and is being properly taken care of. I can feel the frustration of not getting to the hospital. I surely hope you don't try to venture out in this storm. It is already close to a foot deep here.

Only those who've truly walked this walk can even begin to understand what you are saying. Those of us here understand and truly do 'get' it. It is such a helpless feeling to be able to do not much. I am feeling that right now. I always circle my wagon with yours ~ and today is no different ~ snowstorm and all. We alre all right here with you, Barb, listening, hearing, supporting you.

I am going to PM you my #. I hope you will not hesitate for one millisecond from calling it just to breathe at someone who cares. No need to say one word. If better for you, send me your #. I don't want to overstep ~ just want you to know someone is around to listen/chat/ cry/ whatever you need ~ whenever you need.

My thoughts and prayers are on the snowflakes blowing toward NJ, Barb. Go out and catch them.

With much care and friendship,

Kasey

[Barb73]

Susan, Paulette, Katie, Randy, Reynsie, and Kasey,

Today, John and Linda brought me over and brought me back from the hospital, HUMC.

While we were there, I introduced myself to the nurse in charge of Bill. I asked her if he ate breakfast. She said that she didn't know if he did, but I told her that Bill didn't think that he did.

She asked what he would like. I said, scrambled eggs, whole wheat toast, apple sauce, apple juice, and a cup of tea.

It arrived and he ate the WHOLE thing, except the fruit cup - which I ate . That is what Bill does best - eat. Of course, I fed him, but he was there waiting for each bite.

That is the good news.

The doctors haven't decided what to do about the brain bleed.

Bill is in a private room (I know. It came as a surprise to me, as well).

When John, Linda, and Alex (our grandson) brought me home, they went upstairs and took the hospice bed apart, brought it piece by piece down to the living room, and put it together.

I cannot imagine what Bill will think. Yes, Randy, I will remind him that it is closer than the hospital .

Boy, does he hate hospitals. They put a monitor on the bed because they thought he would "take off." He kept talking so much about going home.

You have, in your own way, "known this trip," as you have said, Kasey. All have given me a hug, and I appreciate that so very much. You are special and have the support I need. I love you all.

Barbara

[RandyW]

If nits any consolation Deb spent 3 weeks in ICU for C.Diff an intestinal problem! was there every morning at 5 am and after work ! She came home for a year and a half with out going back. SO the hospital can be a great place to go to get better! Things are going.. along they might take time buit think positive and stay upbeat and everyone will be home faster!

[Barb73]

I hear you, Randy.

Barbara

[ts]

Hi Barbara,

I've been thinking about you and Bill a lot lately. I know how much you wanted to beat that 5 year mark. You are both courageous and admirable and I salute you. I hope Bill can spend this Christmas at home with you. I don't think he will mind being downstairs - it is closer to the kitchen, right?

Hugs,

Stephanie

[Barb73]

Stephanie,

Yes, it is nearer to the kitchen. (Last night, at the hospital, I made sure I ordered supper and today's breakfast.)

Thank you for thinking about us. We appreciate that a lot. It's comforting to be able to come here, and receive input.

Looking out the window here in Northern New Jersey at 4:40 am, I can see the snow is covering everything. It doesn't look that deep.

Hopefully, it will be cleared later so that we can get to the hospital. It's only a 10-15 minute ride from here.

From Bill's hospital room window you can see the front of the hospital, and a very beautiful, lit Christmas tree standing on an island.

I hope he will be home for Christmas.

Barbara

[Reynsie48]

I am so glad that Bill is holding his own.

Working in a hospital, I know that they tend to do everything possible to get people at home with their families at Christmas and if that is not possible, then the hospital is definitely where they should be.

It may not be the idea that you or Bill had for Christmas but I would gladly spend the day in his hospital room with medical help close by if professionals thought it was necessary. What a plus on the private room, you could hold a small family Christmas get together in that.

Hopefully though, that won't be the case and he will be home....a lot can change in five days. Isn't it a shame though that no one knew for sure if Bill had breakfast or not.........it sure would make me want him at home!

Don't forget to take some extra time for yourself while you can as well, what with the worry and the season, your own health wouldn't want to come in question.

Sandy

[Barb73]

Thank you, Sandy,

Yes, the hospital room is actually large enough for a small get-together. I think they wanted to watch him. He is right outside and in view of his nurse-in-charge.

Not to make a big deal about the ordering food issue, but with this disease, weight is always a tricky thing. If a loss becomes too great it's not that easy to "catch back up."

You are right about watching myself healthwise. If I am not able, there really isn't anyone else to physically care for Bill. So, I am eating, making sure I put mats down on the floor when showering, and generally watching my step - no dashing about as I have been told I do.

I have been getting sleep in segments, but they are good hours.

Maybe we will be lucky and the fluid in the brain will decrease and they will let him home. He certainly has them feeling that he would be glad to leave the hospital in the hospital gown (with the back flapping).

Barbara

[fillise]

Barb--so now I have this picture of Bill fleeing down the halls and out the door with his "back flapping!"

I am headed to NC in a little while and won't be on the board much this week so I just wanted to say "Merry Christmas" to you both.

Susan

[Bud Baker]

Barbara,

Wow, it just never gets easier, does it? I hope Bill is home from the hospital soon.

[lilyjohn]

Oh Barbb I am sorry that I haven't responded sooner but being away from home it is not always easy to get to the computer.

I so understand what you are going through. I even had Johnny's case manager tell me that there was no way she could handle things like I did. Still I felt like I failed him in so many ways. Truth is the human body and spirit can only take so many blows before something has to give.

Johnny actually went into the hospital so I could rest because he was keeping me up all night. The thing is I slept even less when away from him. There are just no answers. No right thing or wrong thing except to pray every day that soon no one will ever have to face the ups and downs and heartbreak that we did because of lung cancer.

Take care and I will be praying that you can somehow have a very special Christmas dispite all you have to deal with.

[RandyW]

Debs Oncologist used to spend the day at the hospital and had breakfast with his family! The rest of the day he was on the ward cheering everybody up!

The power of positive thinking indicates a speedy and quick release for Bill! Hope and pray he is home for Holidays with ya!!

[dianew]

I'm sorry I missed this post until now - don't always read the Caregiver posts as I'm the patient not the caregiver -- and I can only imagine what it is like -- I think caregiving is the much much harder job and in my book you are all heroes.

Just wanted you to know that I am keeping you both in my prayers that Bill will be home for Xmas and you are able to have a wonderful holiday with your family.

God bless,

Diane

[Barb73]

Susan,

Yes, that would be Bill doing that fleeing in your mind's eye. He is very persistent, and they are definitely watching him for a leap to freedom, sans proper clothing.

I have a brother-in-law, who is a very tall, self-confident policeman, who left a hospital years ago while they were yelling, "...but we need a urine sample."

Bud, no, it doesn't get any easier. When it is not a physical challenge, the mental/emotional challenges arrive on the scene. What helps is my being able to let you all know - then, I have your input which gives me strength. No lie, this message board has seen me through. God bless the idea of online support.

Lily, we will always think we didn't do enough. It's the way we are. Would you want it any other way? No. You are human and so am I. Both of us have loved our husbands. How else should we feel? We do the best we can. See? You have made me think.

Randy, I am a believer in positive thinking. It is an imperative. You are a pillar of strength dear fellow, and I love you for it. I, on the other hand, lose it every now and again.

Diane, I told my son today that I can make decisions on and for myself without a hassle. Making them for Bill is not the same. He, at this moment in time, has a brain bleed. They will not be draining it. OK. I see the reason. They said that the condition, although larger than before, is none-the-less, a chronic condition. As we grow older, the brain shrinks, and there is more room for his particular swelling.

I sought the nurse-in-charge, and I asked her about all of this. She was the one who told me that they would not be draining the bleed, and the rationale behind that decision.

I asked, "What are they going to do, or think about doing?" She said that they called in a vascular specialist/surgeon to determine (since Bill can no longer have coumadin) whether, or not they should insert a filter (to filter out clots).

When would this be discussed, and would I be a part of this decision?

Tomorrow, evidently, and yes, I would be involved.

The nurse suggested that Bill might be placed in rehab for strength and such. This absolutely scares the dickens out of me.

Is this to keep him in institutionalized care? The nurse mentioned that they have around the clock nursing. He would be watched. This decision has to be expedited from the hospital - not after he leaves.

...and we wonder why there is burnout?

Susan, your Christmas wishes are treasured. Thank you, dear girl. I am determined to give us all here at the Damroth residence a very, joyful Christmas. I wish the same for all here, and a hopeful New Year.

Barbara

[RandyW]

When I used to Lose IT I went outside and YELLED at god !!! Then sucked it up and apologized when I felt better!Hugs and prayers for you and Bill

[Barb73]

Randy,

I need a release like that. It's long overdue.

Glad you suggested that. I have been holding everything inside for far too long, I think.

Barbara

[ginnyde]

Barb, you made me laugh - the brain gets smaller as we get older, I have lost so many words, I guess they just shrank away.

I hope Bill gets home soon. As difficult it is for you when he is home, in many ways it is easier and emotionally better for you both, I would think.

It is important that you are involved in all of the decisions the doctors are making. You are the one that knows the most about your dear Bill and what he would want.

You and Bill are in my prayers. I agree with your attitude about a joyous Christmas. I tried everyday to keep up a normal life to the best of our ability, considering the circumstances. Life is to be lived.

Take care of YOU.