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Have to do something I don't want to 1 year 4 months ago #69613

  • 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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Mel
It is not a happy time. Dad can be very difficult at times but still has mental capacity so cannot forced out of bed if he refuses to do so as that is going against his wishes.
My mother in law died yesterday from pneumonia, she had been in a dementia home for last 3 years. Both my remaining uncles are in dementia homes too.
My sole remaining aunt, my dad's sister, is now in her late 80s as fit as a fiddle, still living and managing independently in her own home.

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Have to do something I don't want to 1 year 4 months ago #69615

  • CindyL
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Sorry to hear about your mother-in-law, mrsb. Hugs.
I hear you about being of sound mind. Mum is the same ( for the most part, she is quite deaf). I think a lot of the problems she had in the hospital was because she wouldn't get out of bed and she didn't like her PT so refused to do anything for them. It took us telling her that if she didn't do what they wanted, she wouldn't be able to come home.
I have an aunt who is really forgetful these days. She has been diagnosed with mild dementia.
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Have to do something I don't want to 1 year 3 months ago #69628

  • MelA
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You are having a rough go of it mrsb. Very sorry to hear your mother-in-law passed, know that was hard on your.

My husband feels in the elderly one either has mental capacity or health. His Dad had mental capacity when he died at 92, my Dad had health until he broke his hip & died at 93.
"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 3 months ago #69698

  • CindyL
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Weeelll, had to send mom back to the hospital today. The fluid has been building up again. Dr. came and checked up on her yesterday and said he would make arrangements for her to be drained via out-patient. But today, we had trouble getting her out of of her transport chair. Her left leg was so swollen, she couldn't put any weight on it, and thus couldn't get out of the chair. So off she went to hospital. She's been admitted, probably for a couple of days to drain the fluid

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Have to do something I don't want to 1 year 3 months ago #69699

  • 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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Sorry to read that Cindy. Hope all goes well and she is soon back home.

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Have to do something I don't want to 1 year 3 months ago #69700

  • CindyL
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Thanks, mrsb, us too! Just called to check on her and she is still in emerg waiting for a room. I don't think we can go see her while she's there, which sucks! The sooner we get her in a room, the sooner they get her drained and the sooner we can get her home.

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Have to do something I don't want to 1 year 3 months ago #69701

  • 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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Dad is out of isolation as Covid free and now getting up with a hoist to sit in a chair in the communal area. Youngest son and I are are 150 miles away but eldest son lives quite near the care home and went to see him in the garden at the home yesterday. He FaceTimed me so I could chat to Dad who looks extremely frail, confused at times and would not put headphones on meaning he couldn't hear what I was saying so T had to bellow at him repeating everything I said.
So sad when one's parents lose their independence and dignity.

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Have to do something I don't want to 1 year 3 months ago #69703

  • CindyL
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That's good news! Being so far away must be hard for you at times. Other than FaceTime, can you speak to him on a phone?
It is hard to see our parents change. Since mum's stroke, she doesn't like change. My mother probably wouldn't even try to use headphones. It was hard enough getting her to talk on a cell phone 3 years ago when she wanted to talk to a cousin.
I find myself having to speak louder to mum these days. Sometimes I call her "Nannie" as talking to her reminds of times she talked to her mother. It was comical at times.!

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Have to do something I don't want to 1 year 3 months ago #69742

  • CindyL
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Well, mum is still in the hospital. It looks like she won't be out any time soon. She had another 8,5 liters of fluid drained yesterday. The problem now is, she's hardly eating so she's getting weak. At this point, I don't think it's "if" she goes into a nursing home, it's when.
We are still going to do whatever we can to bring her home. The doctor says we'll wait until the end of next week and see how she is. Now that some more fluid is gone, she may start eating better.

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Have to do something I don't want to 1 year 3 months ago #69743

  • 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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Oh Cindy that is a lot of fluid, she must be more comfortable without it. My brother has just gone off to visit Dad in his nursing home. I rang yesterday but not the most positive of reports I'm afraid other than he is eating fairly well. I can't chat to him on the phone as he is so deaf now. At least on FaceTime I can actually see him and my son can bellow into his ear what I say, then he can reply.

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Have to do something I don't want to 1 year 3 months ago #69745

  • CindyL
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mrsb, that was the most they've taken off so far! My brother was talking to the nurse when I got to the hospital yesterday. She said she felt better after the did the drain. But she's still not eating much. That is worrisome!
We're hoping to be able to make arrangements for her to have a drain put in and have Extra Mural come in and do the tapping. That way, we won't be putting her in the hospital every few weeks.
I'm glad you can Facetime with your dad. My mother wouldn't even try to do something like that with us. Steven suggested it a couple of times when he didn't go up. Mum is in a ward with 3 other ladies, so yelling at her is hard. And we have to wear masks when visiting, so that makes it harder for her to hear me. Two of her roommates are wanderers and keep coming over to mum's bed. I called Tuesday night at supper to talk to her and one of the other ladies answered the phone. I was not impressed.

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Have to do something I don't want to 1 year 2 months ago #69809

  • CindyL
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Well, it's not an option for us now to bring mum home. She's just way too weak. Still not eating much, sleeping pretty much all the time and it's hard to wake her up when we visit. She knows who I am, but is getting confused. Today Steven and I are meeting with the Discharge Planning Nurse to see how the process works. Truthfully, I don't think she's going to make it into a home. I called her room last night while my sister was there, and mum wouldn't even wake up to talk to us.
They took another 6 liters of fluid off her last week, but nothing since. Her belly is distended again and in my opinion, needs another draining. They put a permanent drain in when they did the last one and the plan was to have Extra Mural come in and drain her when needed.
I'm so depressed and scared right now. Not only do I have to deal with losing my mother, we're going to have to move out of our apartment and don't know where we're going to go.

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Have to do something I don't want to 1 year 2 months ago #69810

  • 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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Sorry to hear that Cindy.
My dad died yesterday afternoon

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Have to do something I don't want to 1 year 2 months ago #69814

  • CindyL
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Oh, mrsb, I am so sorry to hear this! Condolences to you and your family. Hugs from across the big pond.
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Have to do something I don't want to 1 year 2 months ago #69815

  • MelA
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Cindy I'm sorry your Mom isn't doing well enough to come home - thoughts are with you
and your Mom too! Hugs!!
"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 2 months ago #69816

  • MelA
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mrsb I am so very sorry your lost your Dad - know your heart is breaking.
Thinking of you and your family and sending lots of love.
"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 2 months ago #69818

  • poseymint
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MrsB I'm sorry to hear you lost your father. It is very sad. And this Covid pandemic makes it very much worse. Were you able to visit him?

I mentioned that my mother died in July and I miss her very much. I have not gone back there because of the virus. I'm afraid I will catch it on the plane/airport and give it to my family. So its a lonely feeling to be far away and not be able to say goodbye or help out. No funeral, no flowers, no family- its all a very lonely feeling. I was able to support my sister over the phone because I've had hospice care experience. Also I wrote my mom's obituary and epitaph. But Sept 9 was my mother's birthday and I felt so fatigued all month- I think it was a grief symptom. My mother used to always come to visit around her birthday.

I'm not always sad about it. I am glad shes no longer suffering. I'm looking through photos and remembering the happy times, also I created a display of some of the pretty dishes she had given us along with her photo.
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Have to do something I don't want to 1 year 2 months ago #69829

  • 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 not been the easiest of weeks. Dad lived 150 miles away, as do my brother and eldest son (T). Organising his funeral service during a pandemic via e mails and phone calls is a nightmare. We are allowed maximum 30 mourners.
The funeral directors have agreed to let me see him in the chapel of rest on the morning of his cremation so I can say goodbye to him. My brother saw him on his final day. I had not seen him face to face for 6 months courtesy of Covid 19. Last time I saw him was his 90th birthday party with his children, grandchildren and great grandchildren there. It was a lovely afternoon. We spoke often on the phone until he had his fall and ended up in hospital, never to go home again. I managed a few face times with him when T went to visit him in hospital then the care home.
Another 2 weeks until the service then I will start to feel more normal. My poor brother is having to deal with all the admin involved in a death and clearing the house. T has been helping a lot bless him.

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Have to do something I don't want to 1 year 2 months ago #69832

  • CindyL
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Mum is not happy about going into a home, but she does know it's necessary. I've started going through her stuff in her room. Nothing major yet. She's had such a good week this week, I'm kinda feeling guilty about not bringing her home. However, yesterday was more like the reason we are doing this.
Her funeral is paid for, but due to the Covid, we're thinking about just having a graveside service. There's not too many of her friends left.
She has been officially medically discharged, and waiting to go to another floor to wait for a nursing home.
I can't imagine how hard it is for you right now, mrsb. My heart goes out to you at this very difficult time.
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Have to do something I don't want to 1 year 2 months ago #69905

  • CindyL
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Well, it's official. Mum is on the nursing home wait list. We have no idea how long she'll have to wait. Since she has a drain catheter in, it may restrict where she goes. We had to submit 3 choices, and we know that 2 of them will support it. The nursing home liaison is on vacation so we have to wait on her third choice.
But now, on top of everything going on, I have no idea where I am going to be living in a month. We can't stay where we are because we're going to lose my mother's income. We're both on disability and don't make much. Rents are outrageous. Even if we were to move into a one bedroom here, it's 1000 bucks. We don't make that between us.
Life really sucks right now!

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Have to do something I don't want to 1 year 2 months ago #69909

  • 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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Oh Cindy I am sorry to read about your troubles, my heart goes out to you all. I truly hope you manage to work something out.
Tomorrow we say our final farewells to Dad. I am going to see him in the chapel of rest in the morning then the service at the crematorium is in the afternoon.
Sat here waiting for youngest son to pick me up then we have a 3 hour drive to eldest son's. We decided it would just be too much to do there and back in a day.
The only plus to come out of it is that tomorrow morning I will see my southern grandkids for the first time since February thanks to Covid.

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Have to do something I don't want to 1 year 1 month ago #69919

  • CindyL
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I'm glad you'll get to see your dad before the service mrsb. I can imagine how hard that will be for you.
We have feelers out for apartments at reasonable prices. Most apartment buildings are more concerned with the rich folks who can afford their high-end apartments. Hopefully we'll find something.

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