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Mum 5 months 2 weeks ago #71349

  • 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 could be your mum is a bit dehydrated if the weather is warm. It is amazing how much fluid is lost through insensible loss (breathing, excretion and sweating), if it's been hot her insensible loss will have increased and need replacing.

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Mum 5 months 2 weeks ago #71350

  • CindyL
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Mel, unfortunately, no we couldn't be there for rounds. When I called the home, she wasn't even there yet.
Mrsb, she does drink a lot of water and the nurses keep her well supplied.
So we finally did hear back from the NP as the doctor got called away.
She (doctor) feels it's just a progression of mum's congestive heart failure and there isn't much more they can do except keep her as comfortable as possible. We went in last night at supper and she wouldn't touch her soup and I had to feed her the meal replacement to her by spoon. She (mum) didn't even want her milk, and loves milk.
They did do a urine test on her and started antibiotics, but after seeing her last night, I doubt that's the problem.
I have a bad feeling that she's not going to make it to her birthday next month. I'm hoping I'm wrong tho. It would be nice to see her hit 91.

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Mum 5 months 2 weeks ago #71372

  • CindyL
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So, some good news and some bad news.
Mum now has Palliative "orders" which means, if she declines more they can move her to Palliative Care. They have a room right in the home. The good news is now my brother and sister can get in to see her. Cathy went in yesterday and is going in this afternoon. We can have up to 10 people on her visitation list, so of course my brother and sister and niece and nephews are on it. I have a "second mother", a neighbor we lived beside for many years who is a close friend also on the list.
Chuck doesn't know he can get in to see her yet, so we have to coordinate all these visits. This is only if we have had at least one vaccine shot. My niece and nephews are the only ones who don't have them yet. And Cathy's bf is on the list.
She absolutely refused to have any potatoes last night but we did get most of her liquids into her.
Steven and I will be spending most of our time with her and will be there for her supper.

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Mum 5 months 2 weeks ago #71375

  • 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 so sorry to hear that your mum may be heading for palliative care but glad that she can stay in the home and have more family visitors xx
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Mum 5 months 2 weeks ago #71383

  • MelA
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Cindy I'm sorry to hear your Mom may be going to palliative care in the future - it will be easier on her that she won't have to be moved out of the home. Great your brother & sister can now get to see her, and now 10 people can be on her visitors list. Sending good throughs her way, and to you too!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Mum 5 months 2 weeks ago #71386

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Cathy spent both Saturday and Sunday afternoon with her. We went in for supper. During the week, she works so we'll do the lunch time and she will go in for supper.
I think once my "second mom" sees her, she probably won't go in again, but I will keep her on the list.
Unfortunately, my niece doesn't want to get a shot and one nephew is indifferent to it. He lives outside the city, doesn't drive and finds it hard to come into town. My other nephew is planning on getting his today and go see his grandmother tomorrow.
I have on spot left on the list of who can visit, but I don't know who to add. I have one aunt left (on my dad's side) but her memory isn't the best. She lives about an hour and a half away and depends on her daughter to get around. I'm sure under the circumstances my cousin would bring her up.
It''s really hard watching her go through this! She's going the same way my grandmother went.

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Mum 5 months 1 week ago #71436

  • MelA
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Has your "second mom" been in yet Cindy? It is so good others may come visit her now if vaccinated! Sounds like you and Cathy have a good plan going.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Mum 5 months 1 week ago #71440

  • CindyL
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Hey Mel, yeah my "second mom" (Pat), got in a week ago this past Tuesday. And on this past Wednesday, my aunt from out of town got to see her. Had to get special permission for my cousin to come with her as auntie made number 10 on the list.
Mum is basically only eating one meal a day now, and my sister is finding it hard to get her liquids into her at supper. Mum has been staying awake more for visits with us. Not talking much, but at least she's awake.
Yesterday, Steven went and bought her a Wendy's frosty which she had about half of. And half of a timbit. The nurses tell us she eats all of her breakfast, so we asked if she could get that at supper. Maybe she'll eat, maybe she won't. We're just taking everything one day at a time. And spending as much time as we can with her.

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Mum 5 months 1 week ago #71446

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That is great "second mom" Pat got in to see your Mom and so did your aunt - know that meant a lot to your Mom and also to you! Not good that she isn't eating or drinking more - smart for Steven to bring her the Frosty. Also smart to think about her getting a breakfast at dinner time - I hope that stirs her appetite!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Mum 5 months 1 week ago #71448

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According to my sister, she didn't eat nor drink anything on her tray last night. Not even her water. That was shocking! That's the only thing she has been drinking. Even when my brother called, she didn't acknowledge he was on the phone. That was a surprise too.
We'll be heading over to the home after breakfast (we eat late) and will be there all day. Cathy is having work done on her car, so she may not be there for supper. And of course, she's afraid that something will happen. I can relate to that: I didn't get to see my Dad on Friday night and the next day he was gone. I don't think mum is at that point just yet, but close.

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Mum 5 months 5 days ago #71455

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It must be very hard to watch your Mother deteriorate - she is very fortunate to have such a loving, caring daughter like you Cindy!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Mum 5 months 4 days ago #71460

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It's awful to watch. There are times we have to really look at her to make sure she's still breathing. Or listen for her to snore.
I don't even try to get the food into her anymore. I just push the drinks. Even that's getting harder to do. At least she still knows who we are.
We're just taking it day by day. Grateful for every day she is still with us.

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Mum 5 months 4 days ago #71461

  • 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 is so hard. As a nurse I’ve done it so many times but when it was my own mum is was so difficult.. I never got to see my dad at the end of his life courtesy of COVID 19.

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Mum 5 months 4 days ago #71463

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Hang in there Cindy. I am sure it is so difficult to go through, but I'm thankful that you are able to have a lot more visitation with her now.

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Mum 5 months 4 days ago #71464

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Anne, I know how hard that was on you. We didn't get to see my dad the night before he passed because Steven wound up working late, which meant supper was late. By the time we were done eating, it was too late to go visit.
Mom, we are thankful too! But if it wasn't for the fact that she's under Palliative orders, my brother and sister still wouldn't be able to get in to see her. That's the only good thing.
My brother asked me if I'd given her permission to go if she was ready and I said sort of. I told her is she was ready, we'd let her go. I just said it under my breath. But today, I told her out loud if she was ready, we'd be okay. I asked her if she was ready to join dad and her parents and she said no. Now, I don't know if she actually heard my question or not.
She sleeps most of the time we're there, but at least we are there if she wakes up. I think once she goes to the Palliative room, we'll probably be there more.

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Mum 4 months 3 weeks ago #71630

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Just want to let you all know that mum passed away this morning. She had deteriorated quickly since Friday, and yesterday, on of the RN's heard a rattle in her chest and started her on medication for that. She was started on morphine on Friday, so between the two meds, she was pretty sleepy.
She did pass peacefully.

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Mum 4 months 3 weeks ago #71631

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I was afraid to read your post - Oh Cindy I am so sorry for your loss, I recently lost my beloved stepmother who had just turned 94. Your Mom had a peaceful passing which I am thankful for - she really isn't gone, she is alive in your memories and those will never leave you. Grab on to those memories and smile, that is what she would want. Hugs!!

Do not stand at my grave and weep,
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and cry,
I am not there; I did not die.
- Mary Elizabeth Frey, 1932
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Mum 4 months 3 weeks ago #71632

  • mrsb04
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Oh Cindy I am so sorry to hear this news. I echo Melanie’s sentiments. My thoughts are with you and your family.
Take care Anne xx

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Mum 4 months 3 weeks ago #71633

  • momto3boys
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I'm so sorry to hear this Cindy. I hope she took comfort in being surrounded by more of her loved ones than she had during the pandemic in those final weeks. You are in our thoughts.

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Mum 4 months 3 weeks ago #71634

  • CindyL
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Thank you ladies. I am still struggling to accept that she is gone. I get panicky just thinking about not talking to her every night, or seeing her. I know my brother and sister must be feeling the same as I am.
What makes it hardest is today is my birthday. I was born around nine in the morning and she passed about 9:30ish.

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Mum 4 months 2 weeks ago #71644

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Cindy, it sounds like you did a wonderful job caring for your mother through the pandemic and to the end. Good she had a peaceful natural passing, thats a blessing. Its always kind of a shock when someone is gone, they have been there your entire life. Take care of yourself and thanks for sharing your story.

Yesterday was the one year anniversary of my mother's passing- she died July 7, 2020 during the lock down which was unfortunate for me since I live far away. I felt that shock and a loneliness of not being with the family. As you said, its very hard to accept. I visited my sister in April of this year, she lives fairly close to my mother's house. It was so odd for my mother to be gone and not be able to call her. It was still kind of unbelievable. We sold her house while I was there and I went through loads of photos and letters, some I have never seen. It was good to see photos of her when she was young, and read letters from my father when they were first married. To see her life as a whole story was in a way healing.

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Mum 4 months 2 weeks ago #71645

  • mrsb04
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Poseymint
I so agree, when Dad died last year everything had to be sorted out and gone through. I now have photos of my parents when they were little children, plus pictures of my great great relatives who had died before I was born. Also my brother discovered a big box of their diaries, every year from 1954 when they got married, it will take me ages to read through them all but such a privilege to be able to do so.

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Mum 4 months 2 weeks ago #71646

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During a 3 week lock down last year, my sister and I started going through mum's things and came across a lot of pictures, a lot that we don't even know. We didn't get rid of much, but in a few weeks we'll have to get back at sorting through her things again. That's not going to be easy.
We did find an autograph book and diary of mum's too, mrs.b! We also found some pictures "autographed" by the star. Not sure if it's actually the star's signature, but we kept those to maybe have them checked out. She was quite the collector when she was young, and that really didn't change as she grew.
It really is hard knowing we can't pick up the phone to call her or go see her. I had a question for her the other day, and couldn't ask it.
Steven and I are really going to miss her! She's lived with us for the past 5 and a half years and even though she has never seen this new place, it's not home because she's not here.

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Mum 4 months 2 weeks ago #71655

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We laid mum to rest on Friday. It was a hard day for all of us. Steven and my brother did eulogies, Cathy was supposed to say something too, but she couldn't do it.
We were afraid that we would get rained out at the cemetery, but we got lucky, Elsa missed us. It started to sprinkle after the service.
She will be greatly missed by all of us, and the nurse's who all had her as a patient.

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Mum 4 months 1 week ago #71671

  • MelA
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Cindy I hope you are doing well!! Know you all gave your Mom a great send off, and she loves you all the more for that!!

Just thought I'd let you know - my Mom died in 1964 thanks to a drunk driver, my Dad in 2008, and my Mom #2 [stepmom] last month and I still talk to them. They will always be part of my life even if I can't go see them or pick up the phone to talk to them.

Hugs!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Mum 4 months 1 week ago #71672

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We're not doing too bad. Nothing seems right anymore, though.
I'm having a really hard time. Steven's doing a bit better. We're thinking of looking into grief counseling.
I'm glad I'm not the only one who talks to their parents, Mel. Did they find the drunk driver who killed your mom?
I have a Keepsake urn with some of dad's ashes in it which is what I talk to every night.
Last Wednesday would have been their 65th anniversary and this past Friday would have been mum's 91st birthday. Cathy, Chuck, Steven and I had a BBQ at my happy place on Saturday to celebrate.

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Mum 4 months 5 days ago #71678

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Cindy it will be hard for quite some time - I think after I got over being so angry after my Mother died I started doing better. It took a good amount of time but reality hit, then I celebrated her life instead of being angry and I know that is what my Mother would have wanted because she was such a happy loving giving person who loved life and would want me to be the same. Drunk driver was caught, don't know if he was hurt in the accident or not, but nothing happened to him that I'm aware of.

If you feel you need it grief counseling is a very good idea - good that you and Steven are going to look into it. I love the way you celebrated the 65th anniversary and 91st birthday with a BBQ. And I love that my stepsister had a celebration of life for my dear stepmother, unfortunately we did not get there for it as in another State and I'm just not flying now.

Keep talking to your parents - they are listening and smiling down on you.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Mum 4 months 4 days ago #71679

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I wish there was a heart emoji on here!
I think part of the problem is that I have a keepsake urn with some of dad's ashes, but nothing from mum as she didn't want to be cremated.
We had a thunder storm here yesterday and I told Willow (cat) that it was gramma and grandpa bowling. That's what we were told as kids, that the thunder was relatives bowling.
It will get easier with time. I have good days and bad.
It sucks that nothing happened with the drunk driver.
Next BBq will be with the whole family and we'll probably have a cake to celebrate everybody's birthdays.

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Mum 2 months 4 weeks ago #71759

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Cindy I am glad to see you are taking photos again - you have a natural talent!! I sure do enjoy seeing your photos!!
Hope you are doing well!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Mum 2 months 4 weeks ago #71762

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Thanks, Mel.
We still talk about her and little things we see remind us of her. One of the last things we bought for her is a gnome (we named it Gerry) and is hanging in our living room window. She was a big Olaf fan, so anytime we got something Olafy for mum, we had to get for my sister. So any Olaf Cathy and mum had, I kept mum's.
For a long time, my "happy place" wasn't. Yesterday we went up and had a bbq for my nephews birthday and it actually felt like my happy place.
Cathy and I are getting out one day a weekend and going for hikes/walks. It feels good. We talk about mum a lot.
All in all, things are slowly becoming a new normal.

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