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Have to do something I don't want to 1 year 4 months ago #69392

  • CindyL
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2020 really sucks!
Three weeks ago today, my mother wound up in the hospital. Today, we learned that she probably won't be coming home. She's been retaining water, has fluid around the lungs and can't walk very far. Technically she has congested heart failure. So now there is a good chance she is going to be going into a nursing home. Not what we want. Especially with this Covid virus going 'round. Thankfully, my Province has few cases, but the nursing homes are closed to visitors. At least right now, we can go see her in the hospital, just one at a time.
I'm really heartbroken right now. She will be 90 next Thursday(16th) and I have no idea where she is going to be.

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Have to do something I don't want to 1 year 4 months ago #69393

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Cindy sorry to hear that. I know exactly where you are coming from. We are going through the same thing with my 90 year old father. He has just come out of hospital, not coping at home and has taken to his bed requiring someone there all the time. I cannot go as he is 150 miles away and I am in a bubble with my youngest son's family so I can care for grandchildren. My brother is searching for a suitable home for him to go into. Fortunately several family members close by him to help out.

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Have to do something I don't want to 1 year 4 months ago #69394

  • CindyL
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I'm still trying to think of a way to bring her home. Once she is medically discharged, she will have to pay for her stay until we find a place for her. Unfortunately due to her stroke, we're not sure if she realizes what is going to happen.
On top of trying to place mum, Steven and I will be looking for a new place for ourselves as we won't be able to stay here without mum's contribution. Not looking forward to either event!
I do have a brother and sister, but my sister is looking for a new job as her doctor retired(she was the receptionist) and my brother can be a bit pushy.

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Have to do something I don't want to 1 year 4 months ago #69396

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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My dad readmitted to hospital last night

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Have to do something I don't want to 1 year 4 months ago #69397

  • CindyL
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Oh, mrsb, I'm so sorry to hear that! Hope it's not too serious.
Hugs from across the pond.
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Have to do something I don't want to 1 year 4 months ago #69404

  • MelA
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Cindy I'm so sorry your Mom isn't doing well - bless her, and you!! If she has to go to a nursing home hopefully she will be in a room where she can see you out the window!

I must totally agree - 2020 really does suck!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Have to do something I don't want to 1 year 4 months ago #69405

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Oh Ann I'm so sorry to hear your Dad was admitted to the hospital last night - I hope all goes well for him.
Bless you both!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Have to do something I don't want to 1 year 4 months ago #69408

  • CindyL
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For the first time in the 8 years (could be longer) that we've been with this doctor, I'm disappointed in him. He seems to be pushing for mum to go into a nursing home. She's only been in the hospital 3 weeks and he says they won't let her stay there forever. When she was in there 3 years ago, she was 2 months before she was sent to a rehab floor at another hospital. It took them quite a while to get her up on her feet. This year, because she has fluid around the lungs she can't walk far and nobody seems to be doing anything to reduce the fluid. She has been drained twice but is still retaining water.
And with this Covid, we can only visit one at a time. But at least we can!

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Have to do something I don't want to 1 year 4 months ago #69411

  • poseymint
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I totally understand how you all feel. My mother just died on Tuesday of heart failure, age 93. Very sad. I just finished writing her obituary. It was similar, lungs filling with fluid. They tried diuretics and draining the fluid but the fluid caused pneumonia. Plus a blood infection, antibiotics didn't work. She couldn't breathe well enough even with oxygen. The next step would have been put her on a ventilator. My poor sister had to make the very hard decision- no ventilator. I am 2,000 miles away in California and felt I couldn't travel because of the pandemic. I was afraid of catching the virus on the plane/airport and bringing it to my family. The only thing that we were all glad about is that my mother had been at home with just a few days in the hospital. We were so relieved that she didn't have to go to a nursing home. She wouldn't have done well there, and because of the lock down, it would have been very hard on the family. The way it was, her family was with her at the end.
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Have to do something I don't want to 1 year 4 months ago #69413

  • mrsb04
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So sorry to hear about your mum Poseymint. It is awful watching one's elderly parents decline. Dad is 90 now. We are grateful he is in hospital at the moment as he is in a place of safety. He has had several falls just lately.
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Have to do something I don't want to 1 year 4 months ago #69416

  • CindyL
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So sorry to hear about your mom, posey. I totally get why you felt you couldn't make the trip. When this first started, we didn't go anywhere because of my mom.
I've had mum's obit done for a while now. All I have to do is send it to the funeral home. I got her involved in it, so it meets her approval.
I will say she's been lucky so far, no pneumonia. It's in the back of my mind, tho. Steven and I are mum's next of kin and we have her POA. So far, she is still in her right mind, so no issues there. And I don't think she'll do well in a nursing home either. Part of her problem is, she's a big woman and that doesn't help. My heart breaks for what she is going through!
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Have to do something I don't want to 1 year 4 months ago #69447

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Well, we dodged a bullet this time! MUm is coming home on Friday! The charge nurse, doctor and physio had a meeting on Monday and decided she was good as she was going to get. That pissed me off, because before she went into the hospital, she was walking here at home. Mobility isn't even the reason she went in! I'm supposed to go work with her to see how I feel about her walking, but right now, 3 out of the 4 ladies in the room are under isolation. Mum's tests all came back negative, so she's good, not sure about the other 2. so all I can do is help her get back into bed. Can't go up to visit until 2 o'clock, so she's already up when I get there. Getting her up here at home won't be an issue because Steven will help. If she has to stop and rest on her way to/from the bathroom or her bedroom, I'm okay with that. I don't know what the doctor is going to do about the fluid she's still retaining. We will have extra help from Extra Mural (they are like the VON) with physio.

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Have to do something I don't want to 1 year 4 months ago #69449

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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It's never ending Cindy. We have now been told there is medically nothing wrong with Dad other than his age. I was expecting this because it means the NHS wriggle out of paying anything towards his care once he is finally discharged from hospital back into the community. When a bed becomes available he is being transferred to to an NHS cottage hospital for up to 6 weeks of rehabilitation to get him walking again then he will be going to a residential care home and will be paying his own way. No one can tell us what happens if he isn't mobile after 6 weeks rehab. My poor brother is at the end of his ether dealing with it all.

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Have to do something I don't want to 1 year 4 months ago #69450

  • CindyL
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Oh, it's a big pain, isn't it? Physio says she's as good as she's going to get, so I don't think they are even working with her right now. I still feel like they just want her out. At least if she does have to go into a home, we'll have time to look. Tonight I did have trouble getting her to stand up out of her chair so she could go back to bed. But we were talking about her coming home and I think it was just nerves. She always gets like that with change.
So will he be discharged before there is a bed? Here, she could have been medically discharged before a nursing home had a bed available. Then she would be paying out of pocket for her room.

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Have to do something I don't want to 1 year 4 months ago #69451

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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My brother has told them quite categorically that he is not going back to his own house. When he raised the question what if there is not a bed available when he is ready to go they said he could stay up to 6 weeks in the cottage hospital. My guess is they will say he is ready to go after about 3 weeks so we have time to find somewhere. I hope my boys never have to go through this with me when I get old. I've told them to send me to Dignitas when I can't care for myself.

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Have to do something I don't want to 1 year 4 months ago #69454

  • CindyL
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Good luck to your dad.
What is Dignitas?

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Have to do something I don't want to 1 year 4 months ago #69456

  • mrsb04
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www.dignitas.ch

Welcome to DIGNITAS - To live with dignity - To die with dignity, the Swiss self-determination, autonomy and dignity group. We are a not-for-profit member’s society which advocates, educates and supports for improving care and choice in life and at life's end. Our advisory concept of combining palliative care, suicide attempt prevention, advance health care planning and assisted dying offers a basis for decision-making to shape life until the end. Since 1998, we are the spearhead for the worldwide implementation of ‘the last human right’

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Have to do something I don't want to 1 year 4 months ago #69457

  • CindyL
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Oh, I see. It's very similar to our Hospice. End of life care. That's where my dad was when he passed away. The staff were awesome with him and my brother spent most of his time with him.
We're just waiting on the ambulance to bring mum home! Can't wait!

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Have to do something I don't want to 1 year 4 months ago #69460

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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I hope your mum gets home safely Cindy.

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Have to do something I don't want to 1 year 4 months ago #69464

  • CindyL
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She's home!!!!
Got here around our noon time yesterday. No notice, just a knock at the door, a man saying "We have a special delivery". I said "Yes you do!"
It's going to take some time to get used to our new routine. Once we get help with physio, I think we'll be okay!

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Have to do something I don't want to 1 year 4 months ago #69465

  • mrsb04
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Splendid news Cindy.
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Have to do something I don't want to 1 year 4 months ago #69470

  • CindyL
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We are quite happy!

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Have to do something I don't want to 1 year 4 months ago #69481

  • MelA
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Glad to hear your Mom is home Cindy. Hope all goes well!

mrsb I hope your father is doing all right. Is he still in the hospital?

poseymint, I am sorry you lost your Mom - it is never easy to lose a parent no matter what their age. My Mom was 46, my Dad almost 94.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Have to do something I don't want to 1 year 4 months ago #69483

  • mrsb04
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Mel
Dad is still in hospital and not progressing as anticipated unfortunately. My brother has gone away for a well earned break so will get an update when he returns at the end of the week.

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Have to do something I don't want to 1 year 4 months ago #69484

  • MelA
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I'm sorry - there are just some things we cannot control or make better. My thoughts are with you and your family!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Have to do something I don't want to 1 year 4 months ago #69486

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Sorry to hear that, mrsb. Hope things improve soon for all of you.
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Have to do something I don't want to 1 year 4 months ago #69602

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Hi mrsb, how's your dad?

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Have to do something I don't want to 1 year 4 months ago #69603

  • mrsb04
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Not good I'm afraid Cindy. Thank you for asking.
He was transferred to a nursing home on Friday. My brother has just been to see him.
He is being isolated in his room for 14 days. He is enjoying the food but refusing point blank to get out of bed then moaning that he can only see 1 tree out of the window. Bro suggested if he got out of bed into a wheelchair he could be taken to safely sit in the garden. That did not go down too well I'm afraid.
We are at our wits end with him to be honest.

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Have to do something I don't want to 1 year 4 months ago #69604

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I'm sorry to hear that, mrsb. Hopefully he'll make some friends and get out of his room more. After the isolation, of course. I can see my mom refusing to get up too. I hope things get better for your dad.
I"m glad we brought mum home, but I think I do see a home in her future. Since she's been home, she has done more for us than she ever did in the hospital. We actually have her walking.

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Have to do something I don't want to 1 year 3 months ago #69607

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Very sorry to hear that mrsb - I can only imagine how hard this must be for you & your brother. Is the nursing home making him get out of bed even if just to sit in a chair?

Cindy, it is good to hear your mom is doing better.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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