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Sister Not Doing Well


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Not really sure if this is the right place, but thought it might be better than my regular discussion group. My sister Lois, who had brain aneurysm surgery (2 of them) in July is not progressing very well. She was in an acute care rehab in a hospital for the number of days that Medicare will allow, and was slowly making progress. She was moved a week ago to a nursing home with rehab facilities. They are taking good care of her there, but the rehab is not aggressive, and she is regressing. I think she is giving up, and just trying to will herself to die. She has become more confused, and has lost some of the strength in her voice. We know there is only a few months window of time for her to regain enough of her abilities to be able to go home, and at this point, it seems impossible. We are hopeful that when she sees her surgeon soon, he will order her back to acute care rehab. It really just destroys me to see her like this. She is 78, and at the time of the aneurysms was a very active still working lady. She was secretary and clerk for the Baptist association where they live (her husband is the director of missions), and she gave piano lessons in her home. She played piano or organ every Sunday in church. All we are praying for at this time is that she can progress enough to be able to go home, but that is not possible yet. She can do nothing for herself, has to be fed through tube in stomach, cannot even moved her head on pillow. Sorry to go on and on, but I am sick of this for her. She is such a private lady, and having to have everything, I mean everything, done for her is very distressing to her. They are very good to her, but I know her and know she is hating all of this. I think I am just venting here, but I would appreciate prayers for my big Sis.

QMary

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QMary, my heart just hurts for you and your sister, and I am so, so sorry :( You are caught in a living nightmare, and I cannot imagine how painful this is for you to watch your sister suffer like this. Actually I do have some idea, because this (brain aneurysm and the awful aftermath) is exactly what happened to my dear mother several years ago. Please know that we are thinking of you, holding you gently in our hearts, and lifting your beloved sister in our prayers.

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Oh, Mary, I am so sorry about what is happening with your sister. How I wish that surgeon would see her today and order her back to where she was. I know you wish that also. So difficult for her and for you and your family to watch her go through all this. Know that I carry you all in my heart and pray for some good news even this week. Please take care of yourself. You have had a lot to deal with in the past several weeks.

BTW You know you can vent as long and as often as you want here. We are listening and loving.

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Dear QMary,

I am listening, and I hear your frustration, fear, and hope all mixed together with your love.

I hope they can get Lois some aggressive rehab for a few weeks, and see how much she improves.

Meanwhile, I am keeping you and Lois in my heart and prayers.

*<twinkles>*

fae

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I have been talking with my niece. We are now afraid that Lois has pneumonia again. The staff at the nursing home has to get permission from the doctor to send her for xrays, and he is out of pocket today! She is very unresponsive today, and my niece is beside herself with frustration. Apparently things were not good when my niece got to nursing home today, no breathing treatment had been done, and my sister was soiled and no one had taken care of her. I just want to scream. They did finally get the appointment with the surgeon, but it won't be until Oct 6! If she does not go back to the hospital (if she has pneumonia), then I believe the family will move her to a nursing home closer to them, not as nice looking one, but they know the people that run it, and they can be there at many different times of the day to make sure she is cared for. I realize that nursing home care is not hospital care, but my sister CANNOT do anything for herself, so you would think they would check more often! I really thought the care was better there, but apparently I was wrong. Thank you all for your prayers and your concern.

QMary

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QMary,

We are here with you through this...I am praying for your sister and all of your family, because this really concerns all of you. Perhaps moving her closer to home would be better in that it'd be easier to keep an eye on her care and visit more frequently. I don't think it's how the building looks but how caring the staff is. When my mom was in the dementia care facility, it went through management and staff changes and I saw a real difference in the quality of care in the different regimes. To me, a caring staff makes all the difference in the world because caring staff won't leave her soiled, will check on her often, and will lovingly care for her. I hope she gets her X-ray soon...

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Dear Mary, I agree with Kay. As long as the setting is clean and neat, the age of the building etc is irrelevant. When I thought I might need a nursing home for Bill (I never did as he died at home) I visited 14 settings within an hour of home. The best two surprised me. One was brand new with all the bells and whistles. The other was very very old. Both were run by the county...and I learned they were the best (service, staff, food, PT and more) because the State of WI uses them to train CNAs and other licensed folks. You might find out about that in your state if your sister is moved.

I am so so sorry this is happening. I hope better and more aggressive PT and care can be arranged soon. I know how exhausting all this is also. Take care of you.

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Thank you all for the support and the words of kindness. My sister does have pneumonia, and I think the decision will be made today whether or not to send her to the hospital. They have started her on antibiotics. I will know more tonight. The director of nursing home wants to meet with my BIL and the children today. I am afraid they are going to want to move her out of the rehab wing of the nursing home, into the regular. Agreed she is not making any progress right now, but could be due to pneumonia. This happened before when she had pneumonia. I don't think the family will be leaving her in that nursing home anyway. They will probably chose to move her closer to home, and where she can have a private room. Feeling just drained today. My friend Madeleine stayed with me last night, she had an early appointment for 4 hour stress test at hospital, and as she lives a quite a distance, did not want to drive in this morning. It was a good evening, a good distraction for me. We grilled ( in the middle of a hail storm) steaks she had brought and vegys, then she beat the socks off of me in RummiKub. Enjoyed the evening. We are going to lunch when she gets back, she will be starved, as she did not even get coffee this morning. I am holding off on breakfast, so I will be starved also.....comfort food!!! yes. :unsure:

QMary

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You and your sister are in my thoughts and prayers as all of these decisions are made. Peace to you Mary

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Mary, It sounds like the rehab time being used up is wasted while she has Pneumonia as they only allot so much time they'll cover and you want it to have its best effect when she can put forth all her effort into it...which she can't right now. Praying for all of you as you make the decision about where to go from here. I'm glad you had some time with your friend!

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Feeling a little better after talking with my niece last night. The meeting with the social worker and the director, and head nurse was not to talk about putting her in the regular part of nursing home. It was to address any concerns the family had about her care, and to resolve them. My niece had a long list, and they were very receptive to them all. The therapist say that she is progressing, slowly, but progressing. Of course, the pneumonia has slowed things, but now that she is on antibiotics, she is quickly rallying. Lois told my brother in law that she "wants to get on with it". Sherry said she was talking stronger, and therapy went well yesterday. So, for the present we are keeping her in Eagle Crest. My BIL and the kids talked it over, and one, want to see if the improvements will help in her care and therapy, and two, they were concerned that another major move right now, might be very stressful to her. At some point they will move her closer to home, but as long as she is making any progress, they do not want to rock the boat. A couple of my nieces from here (my late oldest sister's girls) are going over to see her on Saturday, and I plan to go back on Monday or Wednesday of next week. So, all in all, I am feeling more positive. The Administration of the Nursing Home seems to really want to work with the family, hope that continues down through the ones that actually do the work! Also my niece requested that only female staff give my sister her baths and showers.....she is a very private person, and a man gave her a bath on Sunday, and we could all tell it upset her...although she did not say a word....just retreated somewhat. The director said that was not a problem, that many of the female patients requested females to do the baths. Time will tell, but feeling somewhat more hopeful.

QMary

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Oh QMary, this is good news. I am so glad that the talks with the staff were positive. My prayer is that Lois continues to improve and that she will soon be back home. Keeping you in my heart.

Anne

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That sounds wonderful, QMary! The one whose attitude matters the most is Lois, and the fact that she WANTS to "get on with in" is the best news of all! Will continue to keep her in prayer and I hope you have a great visit with her this week.

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QMary, I am relieved to hear this news. The plan makes sense. Moving her is a big decision that could easily prove to stress her a lot. Sounds like the staff involvement is hopeful.

Thinking of you with all that is going on including your loss of Faith.

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I had a good visit with my sister, Lois, yesterday. I could see definite improvement over the last visit. Her swallowing is getting better, and they are hoping to do a new swallow test in a few days. Her voice was strong, and she carried on good conversations, not just responses to questions. Her speech therapists told me that she believes before too long my sister will be able to eat regular food! AND the big news is that she has been able to show a little movement in her left leg, and a little bit in 3 fingers of left hand. The left is the side that has been non responsive at all, so this is a step forward! She has her visit with the surgeon a week from next Monday. We still have hopes he will order her another round in Acute rehab, but even if he does not, I am feeling more positive about her situation today. The goal is to get her where she can go home, and that is starting to look like a real possibility. Thank you all for your concern, and your continued prayers.

QMary

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QMary, This is such good news...so many good changes. Yes, I pray the surgeon keeps her on acute rehab...There is huge hope for her...so many things have changed. Always in my prayers and thoughts, Mary

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That is wonderful news! I know it's hard work, but so glad there's hope. :)

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  • 2 weeks later...

I spent Wednesday with my sister Lois at the nursing home. It was a pretty good day. I got to sit in with her when the speech therapist worked with her. She keeps confusing the little gal with her granddaughter Tracy, and they do look alike. Part of the time she calls her by her name, Amanda, and part of the time calls her Tracy. We played a little Trivial pursuit, I took my old cards and we went through a few, she did pretty well, better than me. She was coughing and had a runny nose, I suggested allergies, and the evening nurse called the dr. office and got an antihistamine ordered. The next day, my brother got a call from my BIL saying that Lois was in quarantine, some tests they ran because of the diarrhea problem came back showing she had c.diff ( I had to google it) it is not uncommon in people who have been on antibiotics for a length of time, and especially in nursing home or hospital settings. She has been on antibiotics a lot due to the pneumonia. She is contagious. Usually people will show symptoms within 7 days or so. So far I am showing no symptoms, and it usually attacks people who are also on antibiotics, I am not. I am always careful about washing hands, etc. I am not too worried for myself. However, I am very worried for my sister. During this quarantine time, I doubt that she will be getting any therapy at all!!! We only have a few short months left for improvement!! If not one thing, it is another. When anyone goes in to see her, have to wear gown, gloves, and mask....grrr. They should have thought about this as soon as she started with the diarrhea problem. Instead, my niece finally ran the doctor down, and questioned him as to why suddenly this problem, and he then ordered the test!!! so frustrating..... :angry:

QMary

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Oh, my goodness, QMary. I am so sorry to hear this latest news about Lois. I hope they get it under control quickly so her PT can start up again. Please watch yourself very carefully. Thinking of you and saying a little prayer that all goes well.

Anne

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Oh Mary, I am so sorry about what is going on with Lois and as a result with all of your family. It is so frustrating to have medicine folks who do not do their jobs yet dramatically affect the lives of those we love. Believe me I know about that. Please do keep us in the loop and don't forget to take care of yourself during these trying and worrisome days. You have to be very frightened and worried and that is all exhausting for everyone. You and yours are in my thoughts and prayers as you deal with yet another hurdle.

Peace and hope

Mary

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