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A Particular Reason for Caregiver Burnout


Barb73

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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.

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Barb,

Sorry to hear about your and BIll's difficulties. I for one and so glad you moved the bed downstairs. Everytime he would be on the those stairs I would be stressed out wondering if he was going to fall again. How is your hand?

Many prayers that he makes it home for Cristmas!

Dana

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Ginny, and Dana,

Yes, the hand is healing, but it has transformed from swollen and red, to swollen and blue, but the last is almost a very dark blue/black. Does it hurt? No, and isn't that odd?

Jeanne says it's due to the adrenalin which spilled out at the time of the accident.

Four days to not feel pain? No. It is the same thing that always happens to me. I have a very high threshold of pain. It is not a good thing. Pain is a clue to something wrong. With any good luck, it should tell us that we need to see a doctor.

Ginny, let's face it. Shrinking brains allow more room for things. In Bill's case, the swelling would be considered worse if the area had less space :roll:

Dana, I moved the bed downstairs, and that is a good thing. However, when they decided in the end NOT to drain the brain, NOT to put in a green filter for the clots in his legs (but in this instance, to monitor him to see if he could return to coumadin) I knew that he would be going home today.

Well, they evaluated him, and said that he did "fine." Well, he really didn't. He was listing to one side.

A social worker came to see me. We discussed options for Bill. First, they thought that he would not be able to move easily from the bed to a commode. Then they told me that I could make some decisions.

They offered me a choice of temporary rehab facilities that could help him be stronger and to assist me in having Bill home in less than a month, but, perhaps, in the shape he was in prior to the fall.

The one place in the litany of facilites stood out in my mind. It was one in which our healthcare worker had mentioned that her neighbor was placed.

I signed Bill off to there. I followed the EMS workers. I was totally blown away with the beauty of the place. Our son was, as well. He followed after me. What a blessing. It is totally gorgeous.

Bill won't be home for Christmas, but we will bring Christmas to him. We will ALL be there surrounding him with family. We are being blessed gently even though the situation is not what we would prefer.

Barbara

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Oh Barbara,

I am so happy to hear that Bill is too well to stay in the hospital and that you have found a gorgeous rehab place. Perhaps you can get some personal rest while he is being rehabbed to his best self.

Longer days, shorter nights - I think that is a good thing.

Stephanie

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Barb.... How good that the situation has worked out even if not the way you would have planned but we all know that things happen for a reason and perhaps this is meant to give both you and Bill a peaceful and safe Christmas.

What a good thing to have all of the family around and nearby to facilitate the change and still keep up the Christmas spirit.

Wouldn't it be just wonderful if Bill came home in a month not only as he was pre-fall but better and that they managed to figure out a way to improve his neck and shoulder situation.....you never know.

Know this is for the best and the gift to you whether you had it wrapped or not, is time to heal your wounded hand and maybe see the Doctor for yourself and get some probably badly needed attention knowing how well Bill will be looked after.

Bill sounds like my husband and after getting used to the initial change will take it in stride as he seems to have throughout his journey.

What a couple you two are, I admire how you both adjust to what life hands out both good and bad.

Blessed Christmas to your family.

Sandy

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Thank you Stephanie and Sandy.

I am up waiting for a delivery of groceries from an online store in our area.

Christmas will be here at our home with our children here to eat, and each can go over to the facility to see Bill and wish him good tidings.

I lost my car keys in the snow as I was salting the driveway and sidewalks yesterday. The company I had signed up to do the walks didn't arrive on the day of the storm. I don't know what happened to them. I haven't heard any reponse to my voicemails. A lovely neighbor came and did them for me. But, the salting needed to be done.

I am using Bill's until the spring melts everything. Maybe they will pop up then.

Barbara

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Barb, you and Bill are in my prayers that you find the joy of Christmas in each other and in your children and their families. Even if it is not where you imagined or how you imagined you are together which is something to celebrate.

I'm glad Bill is in a beautiful facility and you have help with the caregiving duties.

I'm sending my love to you both,

Susan

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Thank you, Susan, for the caring message. It does my heart good, truly.

Bill was in therapy yesterday for at least two lengthy sessions, and was able to walk quickly with the walker for quite some time.

In the afternoon, he had speech therapy, and did pretty well on the answers. The area where the "searching for words" was involved took him a bit longer, but he really surprised me. There is work to be done though for him to communicate a bit better.

His appetite was off for a while when he was at the hospital, but now it is back once again. :D

He is going to be followed with the therapists and the goal will be to achieve mobility with balance, and a better handle on communicating.

Last night, Bill was exhausted. I imagine him sleeping very deeply. I'll know when I arrive there this morning. He usually gives a detailed account of what the night was like.

At home last night, there was a voicemail telling me that a doctor wanted to see Bill. It had to do with tumors. I called and they said they knew Bill was at the facility. I have no idea who this doctor is, but it could be an "ambulance chasing situation." Who knows? I'll ask further.

Our youngest son, Joe and his family, including our two grandchildren and our great, granddaughter, will be up for a visit a week after Christmas. This should be a full house for Bill.

I send my love and best wishes for a Blessed Christmas and a Hopeful New Year to you and your family, Susan, and to each and all here at LUNGevity.

Barbara

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A Blessed Christmas and Hopeful New Year to you Barb as well, and Bill and your family and to the Lungevity family.

What an awesome guy, your Bill, sounds like a "Timex" so to speak!

Ambulance chasers.........my goodness, you have to put up with that crap as well as deal with cancer? !!

Next it is the Insurance companys advertising over and over and over, they all want your business or I should say your money, but just don't want to actually have to pay out and will put you through whatever necessary to avoid doing that.

Next in line are the "Cash for Gold" mentality people, every time you turn on the telli, they know things are rough for so many and want to "help" you out by buying your jewelry and keepsakes for a pittance of what they are worth, hoping to make a fortune off of other people's rough times!

Now why can't they all get "cancer" or the equivalent, it would be an eye opener for many of them and give the nice guys a chance to finish first for awhile.

Bah Humbug Ebeneezer Reyn

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Ginny,

I am taking a break from the preparations for the day and checking in at the LUNGevity site.

Thank you for the good wishes, and I do hope that at least a couple of the goals make it through these days with Bill at rehab.

Good wishes to you and yours, as well.

Barbara

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Sandy, :lol:

You gave me a chance to laugh this morning. Thank you.

You're spot on with those descriptions. Whew, yes, the challenges are very much noticed when we find ourselves in trouble in the health area.

Because we left (removed on paper, but I terminated the situation) hospice to go to the hospital, and then on to the rehabilitation facility, the company that placed the bed and the chair want it back.

I came home (after being all day with Bill). It's pitch dark out there and I see a little note pinned to our door. It was dated the day prior, but it wasn't there when I left the house in the morning.

I asked them, "Could we go through Medicare for the bed?" Answer, "No. You need to go through the facility you are presently in, and Medicare will cover 80%. You pay the balance."

OK. But, at a time when the person has had a need for the bed, why can't they do the setup for Medicare? No. He said that the facility Bill is in would do that with whomever they use.

I told the young man on the phone that I am staring at a dire situation, and do not need this on my plate. His answer, "I hear you."

They will be coming for the bed Monday morning, but will only give a window of 9-11 am.

Well, looks as though Scrooge is alive and well in the health business. :roll:

Barbara

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Wish I were there to deal with some of the issues you have, Barbara. I could talk up a real storm about the bed and all. I am a Christmasy(?) kind of person, but I've got the coal ready to shovel out to all those scrooges. I hope this Christmas weekend comes with some peace and lots of love and togetherness for you, Bill, and the rest of your family. I'm still awaiting my phone call! Remember what you said.

Merry Christmas, Barb. Put all the 'stuff' aside today and spend it in love.

My love to you,

Kasey

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Gee Barbara,

Too bad you won't home from 9 till 11 on Monday (!!!) So it is worth it to them to move it out one day and return it a couple of weeks later? Ask for a supervisor - though with the timing as planned, that may not be possible.

Merry Christmas to you and Bill. Be safe, be well, and wallow in the love.

Stephanie

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Kasey,

I am not forgetting about that call.

What has been holding me back has been the trying to put everything together.

For one, I have discovered that Bill has been leaving the food on the plate when I am not there.

Yesterday, our son was there to fill in a space on Christmas Day. He left our house at a different time than the rest of us, and lo and behold, he arrived at Bill's dinner time. He said that Bill ate practically nothing.

So, today, first thing, I need to get over there and bring him an Ensure, plus a supply a couple of protein drinks that he likes.

I am not at peace with this "selective" eating he has begun. Am chomping at the bit this morning.

Kasey, trust that I will call, but if he isn't sticking to the program (eat, therapy, goals) then I am going to feel the stress worse than if he were home somewhat not back to par.

This is another roller coaster ride, I think. Hoping for an upswing very soon (like today when I get over to that facility).

Barbara

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Stephanie,

I feel as though I want to leave early Monday, and let them wonder, but I really don't want their bed, nor the enormous wheelchair that they installed. I have a transport chair that I purchased which supplies any needs in that department.

The HUMC hospice was not a good fit for Bill and me. We did not ask to go on it. Bill's oncologist jumped the gun and put us into it. I am sure he meant well.

They need to revamp their program. It is very confining, filled with caveats, and isn't as "comforting" as they described. Frankly, I am glad to be able to deal with Medicare and our insurance company, instead.

As for help, at this point, I am extremely disappointed in our system. I guess this particular hospice is good when someone has a short time, but if there is no further treatment, and the person is still fighting, it isn't.

Barbara

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Oh Barb,

I so hope that you get that upswing that you need today.

Perhaps Bill is just tired, and has lost a bit of his spunk for now, it has got to be quite an adjustment on top of everything else to be away from home, no matter how much the need may be.

Maybe once he realizes that you are "on to him" he will get back on track.

This has got to be so rough on you, wanting to be in two places at the same time!

Wishing and hoping for some good news.

Sandy

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  • 2 weeks later...

Barbara, I don't know how I missed all this. I must have been terribly caught up in preparation for Christmas. No excuse! I've been missing you and went into that awful "search" where you have to go page by page until you find a person's username. When I did, I went to your profile and checked the "all posts" by you and got this. I couldn't believe I didn't see it all that time the thread was running. I'm telling you dear, I read every single post from start to finish and my heart just ached for all the two of you went through sincoue Bill fell and landed in the hospital.

Now it's been awhile since the last post and I'm worried. How is it going for Bill? Is he eating? Did he come home? My guess it he was very unhappy to be in the rehab, no matter how beautiful or necessary the therapy is/was. My dear, I'm sure he just wants to be home with you. Let us hear from you soon o.k. You are one of the most gentle people on the site and I am so sorry I missed this time in your journey.

Judy in Key Wet

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