Narrowminded continues

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Re: Narrowminded continues

Post by Narrowminded on Tue Jun 12, 2018 9:27 am

Thank you Pam. Had a weepy moment this morning. Just not knowing the right things to do or say to support DD right now.

As I mentioned to another friend, supporting/dealing with Adult children is tough and we thought it was tough when they were toddlers/kids Smile

We will get through.

I was hungry this morning and I made a hash that both of us ate.

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Re: Narrowminded continues

Post by Pedidoc on Tue Jun 12, 2018 11:00 am

DH and I have always said the boys needed us more as teens than toddlers and Big kids equal big problems. Hang in there and know it gets better.
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Re: Narrowminded continues

Post by Narrowminded on Tue Jun 12, 2018 10:43 pm

Thanks Kathi. Age 23 is no picknick esp with her dads situation, PT school and then this break up. It’s wicked. I know it will get better

W30-12

Breakfast - hash, coffee/CO
Lunch - 2 hard eggs, baby carrots, 2 strawberries
Dinner - salmon, W30 tarter sauce, broccoli
Afternoon snack decaf with CO

It’s been a really up and down day emotionally. Did get in LHT and walk.

Right now DH is having an episode. So ending up later than planned.

162 days steps
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Re: Narrowminded continues

Post by perennialpam on Wed Jun 13, 2018 7:34 am

You show us such strength.

My heart would break too and did when my DS went through a divorce years back.

Hang in there supporting your DD.

Sorry DH is having an issue.



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Re: Narrowminded continues

Post by Narrowminded on Wed Jun 13, 2018 7:58 am

Thank you Pam

So here’s the scoop on DH. His SATS dropped his HR went up, is BP went up and he spiked a low grade temp 100. We got him cleaned out, but it took all night at 5L of O2 to get him back to just about his normal SATS. This is the 3rd or 4th time for one of these episodes, starting on Mother’s Day. Things are definitely showing signs of his body wearing out.

DDad will be with me today. Mom is having hopefully her last procedure. They will again biopsy 3 or 4th one, still trying to prove CA. I don’t know why. She doesn’t want surgery nor do we want her to have it, to risky. Chemo isn’t really something we’d suggest either. If it does come back positive, chemo isn’t going to be much help and will just make her sick. My thought is, just let it run it’s course.

Hoping for a decent day.
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Re: Narrowminded continues

Post by Rig D on Wed Jun 13, 2018 8:41 am

Tough times and events. Prayers for you and your family members.
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Re: Narrowminded continues

Post by tomi1000 on Wed Jun 13, 2018 1:05 pm

Wow - you do have a lot going on right now. As PP said - such strength! It is said that God will not give us more than we can handle. But that handling comes only with His strength. It is such a comfort to know we don't carry these burdens alone.

Prayers for you, for your husband, for your mom, for your dad, and for your daughter.
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Re: Narrowminded continues

Post by Narrowminded on Wed Jun 13, 2018 1:18 pm

Thank you all. It’s been a rough morning as well. Two more clean outs, don’t know where the man puts it.

Tomi yes not more than we can handle. I often laugh and tell Him the def thinks I can handle way more than I can.

Nurse will be here soon, so a second set of eyes and ears.
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Re: Narrowminded continues

Post by tomi1000 on Wed Jun 13, 2018 1:37 pm

Isn't that the truth.............. He always seems to allow a bigger load than what we really think we can carry. Perhaps to allow us to rely on HIS mighty arms to help carry it??? Wink May He pour out His blessings on your family today.
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Re: Narrowminded continues

Post by marcadav on Wed Jun 13, 2018 1:48 pm

NM, I'm sorry your plate is even more full than it's overflowing normal state. I also agree with everyone else- Your strength is beyond amazing.

About God and handling things-- I always said, even as I child, that I would have twins (my mom was a twin). My mom would always, reply, "God wouldn't do that to you.He gave you CP. He wouldn't give you any more to handle."

My twin daughters turn 28 next month.

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Re: Narrowminded continues

Post by ONTARIO on Wed Jun 13, 2018 2:09 pm

I'm sorry you are again dealing with issues. I hope your husband turns the corner and you don't have any more episodes. I also hope your mom is okay.

Make sure you take some time for you today whenever you can. You need to take care of you, as well!

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Re: Narrowminded continues

Post by Narrowminded on Wed Jun 13, 2018 11:43 pm

w30-13

Breakfast. Coffee/CO
Lunch hash
Dinner. Tilapia/tartar, coleslaw and tomato/cuke/onion salad balsamic and EVOO
Decaf/CO
Walk

Tomi yes we are to lean on HIS arms. Still hard at times Smile

Marcadav love that you have those twins. Thank you

Ontario at some point DH won’t turn the corner. Not saying this is the time, but I have to be realistic. Nearly 8 years on a vent is astounding in his condition.

I did get a blessing today. They found me a nurse. She met the one that was coming here and it was a surprise. She was here about 3.5 hours and is coming tomorrow. I believe I will have her up to speed very quickly.

DD finally spoke to EX. She now has her answer but doesn’t make it easier. However healing can begin.

Dad arrived about 9:30. My Wed helper arrived just after. The she left and it was lunch. Then the nurses arrived about 1:30amd the new one left close to 5. I spent the afternoon dealing with her.

Mom had her procedure so many texts from SIL. That went well. She is staying overnight at the hospital. Then home in the morning as she got sick twice after.

So my day was crazy, but I did get a walk. And managed my 10000 steps

Oh and this nurse doesn’t like chemicals or statins and I directed her to Terry Wahls Tedx and the Magic Pill. She loves YouTube, so she can find Terry. May just make a Primal convert while she’s with us. We will see. Oh and she also loves CO. She was thrilled when she heard that’s what I use on DH’s skin instead of chemical lotions.

Ok it’s way late and I have to sleep.
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Re: Narrowminded continues

Post by Annieh on Thu Jun 14, 2018 2:20 am

So glad you are getting more nursing help, and especially that the new nurse is on your same page regarding chemicals etc, that will be reassuring. Blessings to you during this tough time.
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Re: Narrowminded continues

Post by ONTARIO on Thu Jun 14, 2018 9:05 am

I did get a blessing today. They found me a nurse. She met the one that was coming here and it was a surprise. She was here about 3.5 hours and is coming tomorrow. I believe I will have her up to speed very quickly.

Yes, on that! I'm so glad that, at least, has worked itself out for you!

I am proud of you for still getting in your steps. You must put YOU as a priority as well.

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Re: Narrowminded continues

Post by Rig D on Thu Jun 14, 2018 10:20 am

The new nurse sound like a winner, I really hope she sticks with you and becomes a solid partner in DH's care. Having someone with the same underlying principles should really help.
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Re: Narrowminded continues

Post by Narrowminded on Thu Jun 14, 2018 11:13 am

Well, we will see about new nurse. She called off sick today. I did reach out to the nursing supervisor to be sure that she really is sick. She is looking into it, but says this gal never calls off. So my day is not going as planned thus far.

Mom is being tested in liquids today and then go from there.

DD is a mess, as expected, and just made things worse when my nurse didn’t show. She is so very worried about me. I do understand, but it just kills me that this freaking disease also took out her relationship. Not directly, but if she had not been so anxious about me, she would have been happier when with the Ex and things would not have spiraled. His lack of expressing his frustration is what led to him breaking it off because he could not deal with her moods anymore. A jumbles mess, but he admits it was his fault for not expressing what he was feeling and always told DD when she asked that he was fine.

I pray that no one here ever has to face the horrors of ALS.

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Re: Narrowminded continues

Post by tomi1000 on Thu Jun 14, 2018 4:20 pm

I'm trying to find a few comforting words.......... but all I can do is pray for you. I hope your daughter is able to process and let go. My first thought is that he's not the right one for her if he can't be there to help her through the hard times. But, I don't want to judge him either. I hope they can find a way to deal with it all.

Sorry about the nurse caling sick today. Hopefully this is a very rare occurrence.
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Re: Narrowminded continues

Post by Narrowminded on Thu Jun 14, 2018 8:29 pm


W30-14

Breakfast - hash, coffee CO
Lunch - skipped, not hungry
Snack - spoonful of nut butter
Dinner - hamburger wrapped in Collard green with chipotle mayo, onion tomato, coleslaw, cuke, Tom and onion salad.

Steps are in

Tomi that’s just it, he has helped her through sooo many hard times. Her dad going through pneumonia a few times, sespis once, our move here, even brought 5 people to help with the move.

He has been a rock. That’s what makes this tougher. This last year is probably what did it. DD had a breakdown last May over being afraid to have me here alone with her Dad. He was great. Then when we moved her to school, he was so freaked out about where she was living and Her initial freak outs with the work load. However, DD can be a beast when she’s stressed. Her tongue can shred you. I’ve worked on this with her forever, she gets it from her dad. However, BF never complained and and if she ever asked what was wrong he’d say things were fine. Unfortunately he never could express what he was feeling and the frustration of her mood swings build up overtime and finally exploded and he couldn’t take it anymore. He said he just tried to make her happy. So fault falls on both sides. However, she never saw it coming and really, really loved him and had just started thinking about a future. He really was a great guy. That’s what makes this so hard.

Well, found out that the nursing super wasn’t totally open about this being a temporary thing. So the super found out today that this persons normal patient was coming home from the hospital today. She works 60hr/w for them so no space to even come here. So she’s gone.

DH’s Dr. Ordered Home Health, really wanted a CRNP to come out and visit. Then said a gal that was going to call was about Palliative care. Here we go again, he’s on a vent and doesn’t want to come off. So that doesn’t work. Home Health basically come in just to assess him and any needs. Not to help me. They have a Social Worker, well I hope she has a magic wand. So far I haven’t found one that can work miracles. We will see how it goes.

Ok, on a better note, DH is doing a bit better this evening. Not good but better than yesterday.

DD came home and had a really good cry. Then my Dad got her belly laughing during dinner. That was huge.

Mom was discharged today and will spend the night at my brothers to be safe, then both home tomorrow.

Hugs

Sue
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Re: Narrowminded continues

Post by Pedidoc on Thu Jun 14, 2018 9:35 pm

Prayers for you, Sue, DH, DD, ex, mom, and dad. Yes, fault on both sides, but still possible for them to get back together. Sorry about the nurse. Wish I was closer.
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Re: Narrowminded continues

Post by tomi1000 on Thu Jun 14, 2018 9:45 pm

I second that ^. Sorry about the nurse.......... what a blow. Good to hear he is doing better today.

I agree that BF and DD could get back together - if they are truly in love they will find a way to make it through this. Sounds like they need better communication, and maybe DD needs to find a better way to express her stress and anxiety.

Hugs......... hope you all sleep well.
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Re: Narrowminded continues

Post by Rig D on Fri Jun 15, 2018 8:14 am

Really sorry about the nurse situation. Perhaps you can ask for her to be assigned to you if/when she frees up from her current patient?
Good news about Mom. I agree with others, if DD and BF are the right pairing, they will find a way to make it through this period.
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Re: Narrowminded continues

Post by perennialpam on Fri Jun 15, 2018 9:50 am

Gosh, a surprise that the nurse is not a go....again. Good grief.

It will take a while for this breakup to calm down. Patience.

Glad mom is coming home. Perhaps some progress with their move?

Bless you NM.
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Re: Narrowminded continues

Post by Narrowminded on Fri Jun 15, 2018 7:52 pm

Thank you everyone

W30-15

Breakfast - hash, coffee/CO
Lunch - burger on collard w/mayo, tomato, onion, coleslaw
Dinner - Pinterest Sp squash Alfredo w/chicken. OMG awesome, coffee/co and a date/nut ball.

As to DD, BF said they could not just take a break. However, I’d rather him say that, than her sitting here hoping that maybe tomorrow or next week will be when they get back. Doesn’t mean they never will, but at least she can move forward this way.

Mom and Dad are both snuggly back in their apartment. DB brought mom and I brought Dad, SIL picked up meds and met us there. I then filled their med containers, took Dad to the grocery and paid the one bill that was there.

Then I drove the deposit over to the IL place. They are thinking like a month until it would be ready. I was going to stop at her apartment office today to let them know the plans, however it was too late, as I had the check to take, then my own groceries.

Got home about 4. Cooked as cooked can be. Could not even think straight. Too many bad nights of sleep. Hopefully I can sleep well tonight.

After dinner I did get in a good mile and a half walk. So my steps are once again in, now I just have to make my bed. It will be an early bedtime.
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Re: Narrowminded continues

Post by Pedidoc on Sat Jun 16, 2018 8:15 am

I am glad mom and dad are settled back in. Smart on ex's part, as it does give them the opportunity for closure and to meet others. If it is meant to be, they could circle back to each other. I hope you got decent sleep last night and wake up feeling refreshed.
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Re: Narrowminded continues

Post by perennialpam on Sat Jun 16, 2018 8:43 am

What a day you had! I think I could/should say that every day.

Hope sleep did not evade you.
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