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Client/Hospice at Facility, & I am her private caregiver. *(Patient) "PT"
This is a very fractured family. in ways that I am still finding out.
I cared for her for ( what I thought was 6 months, & 8 - 9 mo.
the SISTER, decides to show up (the one, where the biological mother died at the birth of her, arrived without notice today)!
My "PT" has either been in a Hospital or Long Term Rehab/Hospice care since May 30, 2014.
SISTER never calls. No one ever calls. NO family and there are 12.
My husband and I are her only advocates.
I am there as you know many hours a day x 7 days a week.
Hospice became involved 2 wks ago. Hard for "PT" to accept.
Two weeks later, and now, she is not swallowing foods, & they are keeping her comfortable, without the use of morphine.

"PT" asked me & told me that at the very beginning. "If i ever get to Hospice, you know what I need, "they stated" they have her on lorazepam, and she stated that morphine gets her dreaming and thinking crazy things, so I have told them this, & they have provided another medication,a very low level.

She started rejecting her medications. 10/1/2014
CHF (2005), COPD (2009), Ulcerative Colitis (2001)

The body has just warn out. This is a woman, that has been "more than difficult each day".

Today, I was with her, & she and I understand her both in communicative and non communicative ways.

Then, "the SISTER" the sister that tried to take her freedom from her 4 - 5 years ago by finding an attorney and making her incompetent stopped by.

The mood changed, all of the sudden, my "PT" was wide awake, had wild eyes, very weak, off and on dozing, and the sister (75) just would not stop talking, and stated many negative about many things in front of me. Made me sick to hear. Stating this to a my "PT" her sister.

I was in the middle of changing her, and it was not pleasant. I did of course a great job, and left her very clean, and SISTER said "are you trained for that". I have been warned of sister.

Then I wanted to respect their privacy, however "PT' had not eaten, and she said, go ahead and feed her. Obviously sister was not involved enough to want to feed sister. (my client).

Well, then another couple came in, & for my "PT", this was too much, they were all talking, & I was silent, just brushing her hair, etc. Sister said "give her some space"? I said to SISTER, this is what your sister and I do each night at this time. She has only known me to be here for her, and we have established things, and it is very comforting and warm. (She rolled her eyes), and said P.L.E.A.S.E. (give me a break).

Hearing is the last sense to go. Why do people talk in front of the dying?
my "PT" is number one. I have been doing this everyday, and some days just like caring for my live in parents becomes exhausting. I do it because I love to make a loving difference.

SISter made it a horrible experience, Horrible. First off "Pt' is not cognitive, impaired, non ambulatory and Hospice downgraded her, and that was before she was on any medications. They are not doping her up, she falls asleep on her own, and wakes up in horrible screaming pain. I think her entire leg or leg(s) are in muscle spasms. Used to use "Lasi

Sister, tells me everything I am doing wrong. she hasn't called her since May 30, 2014, & she "Pt' refused to see her when she showed up in the hospital and was cognitive.

"PT": What are you doing here? SISTER:, to love you and to show I care.
"PT" said: Why, that means nothing to me, you tried to take my freedom from me.
"PT" said: That was a long time ago. SISTER: I KNOW You Forgive me for that.
"PT? said: How old are you. SISTER:. I am 3 you are 6. I looked at her strangely, and said, this is hard for her to understand, & of course I got"you are not in this family, you are not trusted, you are too protective of my sister, she is independent & can get a glass of water on her own, you do not need to sit & be with her, this caregiving is a waste of money" The "PT" would have said something but fell asleep. "she would have been furious".

"PT" hired me, has paid me every dime with a full invoice of each week, & there have never been issues. Apprvd. by cpa and ATTNY

I know that when the situation happened 3-5 years ago, my "PT" took her sister off of her will totally.

She started asking about that: My "PT" became really confused and agitated.

Sister said: Why don't you do something her right arm is shaking, & she must be cold. I said, no, she is not cold, the heat is on 74, & this is a condition that she has developed over the last 3 month's. (start of Park. D)

Sister said: Well why didn't you call me.
My response: I work for my client. I honor my client's wishes and after talking to my client. Never wanted me to call her.

FINAL: Sister said, YOU can leave, you are not wanted. "PT" screamed, kicked was fighting, SISTER shoved me out the door. Police escorted her out.

Going Home

Advice?

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Maggie:
Thank you, very kind, and very sweet of you. As most of us know, parents of our own, or other people are all about love, compassion, quality of life, and really loving what we do. I was a banker for 23 some years, and due to my mother's Alzheimer's 8 years ago, I made the best decision to make a difference for others. I believe "step by step" that the world or my community is knowing that people care, people love, and people do have compassion.

Also, as I said my mother has Alzheimer's and we put her in an AL home, and she is doing so well. I see her three times a week, and it puts joy in my heart to see her finally settling down. I love her so much, and realize that family is family, and noting can tear that apart.

By the way, I have been called, "Princess Angel", I found your one line so inspiring.

Bless you Maggie
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I did not insist on following the routine.
This was her first family visitation.
Of course I allowed personal space. Like I said, things need to be reworded, and always with many sets of eyes, we realize and learn from that.
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I wanted to say, when I went back into the room, it was to grab my personal belongings, and leave for the night. So maximum of a 5 hour period I was in the room for maximum 30 minutes. The other couple was with them for 4 hours.
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Eyerish:
I see what you are saying, and I must clarify, possibly where there wasn't room. When the sister walked in, I was changing her sister, and so she insisted in coming in the room. I was very polite.

I did not and I need to state, this differently "stick to our routine", it must or I should have worded it differently. I left the room and another set of friends entered. I did administrative things for my client, as I am her household manager, and yes this is a fractured family, but there are many. I realize, blood is thicker than water, that is why, regardless of whom calls, and they are all very supportive of me, and appreciate what I do, I am very cordial and polite. Defiance, no, I have spoken to the other woman that was there, she does not believe that was the word. She said, what happened, was that her sister was asking her questions when I was NOT in the room to be respective of their privacy, and my client was not cognitive enough to answer properly, and the other sister state, so your caregiver is not meeting your needs, and is taking over, and my client said "no, we get along fine". There are many parts of this that are so detailed, and I just know that I am always in the line of "the family is always right". I am by nature not a defensive person.

This client has days possibly to live, and I have the support of the facility she is in.
Regardless, I was just asking on this post for advice. After re reading what I posted, I failed to mention that she invited me to stay in the room, and I did the initial cleaning on my client and then allowed them their privacy, and I heard yelling, and knew what was going on, and allowed them to be family.
I am a family too, I get it, blood is thicker than water. Regardless of what anyone says.

I must add, when sister went to the restroom, my client called for me, as I was in the community dining, and she said "get her out of here" My client is not coherent at this time, and I just held her hand,and said nothing.

So, the reality was, I was in the room maximum of 20 minutes. Sister was there all morning, and I specifically stayed away, and I showed up at 2:30 to assist to my client, and I get what you are saying. I understand it, and I know it.

When at the end of life, and you have tended to a person for so long so many hours,
what is wrong with writing that it becomes emotionally difficult for everyone involved?

What I would like to state Eyerish, is this aging care.com is a place where people go at times, when they need to talk. No action is needed, just talk, and it is nice to hear other peoples statements. I ran out of room, and I try to fill in what is necessary, but I know without a doubt I am dispensable. I also know this situation, nothing in life is secure. That is reality.

Thank you for your comments. I will take what I believe would be useful for me, and for what I already know, I am twice as knowledgeable.

The best to you.
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My advice to you is to keep doing what you are doing: Angel's Work.
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Never get in the middle of family. You're the only one that is expendable.

Explain to your client that you're going to give her some time to spend with her sister and that you'll be right outside if she needs anything. If your client insists that you stay that's a judgement call. I would have given them some time alone.

Your client's routine doesn't mean anything to visitors and sometimes we need to be flexible when visitors come. I wouldn't insist on following the routine, that seems like an act of defiance. You're the caregiver, you're not family, you don't have a say in what goes on in the family. Remember, you're the only person in this scenario that can be replaced. And while you and your client may be very close you have to show respect to the family regardless of what your client has told you about them in the past. As a caregiver, you're impartial and you have no opinions.

The quickest way to lose your job is to get in the middle of family stuff. You will never truly understand the relationships or the kind of sway family has with eachother. How do you know the sister won't throw herself at your client's feet, beg for forgiveness, and then see to it that you're fired? I've seen it happen.

And if the sister is a psycho don't put anything past her. Again, you're the caregiver, you don't matter to the sister. If the sister wanted you to leave you should have left the room (not the premises). You could have stayed close to ensure your client was ok, checked on her from time to time but stayed away and let this sister blow through and been done with it.
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