Positive thoughts please-ups and downs p.42

[SharonZ]

Did you ask about a Chewy visit?

 

[kimblebee]

Did you ask about a Chewy visit?

Yeah, it’s a no go. I’m also not allowed to spend the night. Well, they said they wouldn’t tell me no but it is strongly discouraged.

I haven’t been up to see him, he said he’s not really up for a visit. I want to listen to him but I also want to force my way in and demand he talk to me. We did talk for half an hour on the phone and that’s a new record..maybe even from when we first met LOL
I have a dr appt tomorrow afternoon and then I’ll head to the hospital for the evening.

A social worker from the hospital called today and I’m going to meet with him for about an hour on Thursday. I’m hoping I can convince this guy that Richard needs some long term, one on one help. I’m not going to spill all his mental health issues here but he suffers. A lot.

I think I’ve given up the hope that he’ll be home for Christmas or our anniversary. I know I have to stay positive for him, and I am when I’m talking to him, but in private I’m so scared. What if he never leaves the hospital? What happens if he comes home but we have to get a full time nurse for him? We can’t afford anything like that and his coverage from work all has limits. A private duty nurse is capped at $5000. That will get us what, a week?

Ok, deep breath..

Thank you everyone for the jokes. I am writing them down to take up to him. Maybe he won’t laugh but I’ll get a nurse at least.

Got the ambulance bill today..$340 for a 15 minute ride! Good thing we can be reimbursed but we have to pay first.


That’s all I have for now.

 

[macraven]

First
Sending you

Second

Hang in there
You will gain a lot of info from the social worker in this weeks meeting

Make notes now of things you need to ask
Check them off once when sw addresses them

Would you feel better if you took a close friend with you for this meeting?

Hang in there!
We all are sending you good thoughts and prayers

 

[superme80]

Sending you lots of love and healing prayers for your husband!

 

[lovemygoofy]

Yeah, it’s a no go. I’m also not allowed to spend the night. Well, they said they wouldn’t tell me no but it is strongly discouraged.

I haven’t been up to see him, he said he’s not really up for a visit. I want to listen to him but I also want to force my way in and demand he talk to me. We did talk for half an hour on the phone and that’s a new record..maybe even from when we first met LOL
I have a dr appt tomorrow afternoon and then I’ll head to the hospital for the evening.

A social worker from the hospital called today and I’m going to meet with him for about an hour on Thursday. I’m hoping I can convince this guy that Richard needs some long term, one on one help. I’m not going to spill all his mental health issues here but he suffers. A lot.

I think I’ve given up the hope that he’ll be home for Christmas or our anniversary. I know I have to stay positive for him, and I am when I’m talking to him, but in private I’m so scared. What if he never leaves the hospital? What happens if he comes home but we have to get a full time nurse for him? We can’t afford anything like that and his coverage from work all has limits. A private duty nurse is capped at $5000. That will get us what, a week?

Ok, deep breath..

Thank you everyone for the jokes. I am writing them down to take up to him. Maybe he won’t laugh but I’ll get a nurse at least.

Got the ambulance bill today..$340 for a 15 minute ride! Good thing we can be reimbursed but we have to pay first.


That’s all I have for now.

I have no idea how Canadian medical system works but I'm guessing the social worker wants to discuss next steps about your husband's care and likely going to skilled nursing facility for physical and occupational therapy. Again, I don't know how medical insurance works there and what all is covered and for how long. You mentioned difficulty feeding himself or even moving. I would guess he still on IV therapy for antibiotics. I know all this from personal experience dealing with my father in law. I would take someone with you or have someone on the phone listening and taking notes. Our hospital social worker wanted to know if we had any specific affiliation with skilled nursing centers or specific place we would want him transferred to continue treatment.

I would be very very honest if you don't think you can handle the responsibilities at home and you mentioned your insurance doesn't cover much home health care. I know your husband likely wants to come home but he also needs to have the best care he can to get better and come home to be with you whole and healthy. It just won't be easy for you if that is the difficult conversation from the social worker.

I hope Richard continues to heal and you can all be together all the time again until he is on your nerves and you love it.

 

[Kitty 34]

Yeah, it’s a no go. I’m also not allowed to spend the night. Well, they said they wouldn’t tell me no but it is strongly discouraged.

I haven’t been up to see him, he said he’s not really up for a visit. I want to listen to him but I also want to force my way in and demand he talk to me. We did talk for half an hour on the phone and that’s a new record..maybe even from when we first met LOL
I have a dr appt tomorrow afternoon and then I’ll head to the hospital for the evening.

A social worker from the hospital called today and I’m going to meet with him for about an hour on Thursday. I’m hoping I can convince this guy that Richard needs some long term, one on one help. I’m not going to spill all his mental health issues here but he suffers. A lot.

I think I’ve given up the hope that he’ll be home for Christmas or our anniversary. I know I have to stay positive for him, and I am when I’m talking to him, but in private I’m so scared. What if he never leaves the hospital? What happens if he comes home but we have to get a full time nurse for him? We can’t afford anything like that and his coverage from work all has limits. A private duty nurse is capped at $5000. That will get us what, a week?

Ok, deep breath..

Thank you everyone for the jokes. I am writing them down to take up to him. Maybe he won’t laugh but I’ll get a nurse at least.

Got the ambulance bill today..$340 for a 15 minute ride! Good thing we can be reimbursed but we have to pay first.


That’s all I have for now.

Yes, take a deep breath. Watch some mindless TV in the evening or listen to some of your favorite music. Something that might help you not worry and do the what ifs as much right now.

 

[jodybird511]

Hugs and positive thoughts to you. I've been following along, but not posting. I want to agree with others that you should absolutely take a family member with you to that meeting. You may want to also ask if you can record it on your phone, just so that you can go back and reference later. I think lovemygoofy is likely right--you're probably looking at a longer term care facility before he would even think about coming home. I previously worked on an acute rehab unit in a hospital here in the states, and frequently, staff would do a home visit to determine if home is set up and ready or set-up-able for someone with your husband's needs before they would make that move. He will probably need intensive OT and PT to regain flexibility and strength--this would happen either in a skilled nursing facility or on an acute rehab unit within a hospital. Take a breath--this is all new territory, but you've totally got this. Just make sure you are using your support resources (family, friends, etc.)...sorry, I'm a psychologist...

 

[kimblebee]

Hugs and positive thoughts to you. I've been following along, but not posting. I want to agree with others that you should absolutely take a family member with you to that meeting. You may want to also ask if you can record it on your phone, just so that you can go back and reference later. I think lovemygoofy is likely right--you're probably looking at a longer term care facility before he would even think about coming home. I previously worked on an acute rehab unit in a hospital here in the states, and frequently, staff would do a home visit to determine if home is set up and ready or set-up-able for someone with your husband's needs before they would make that move. He will probably need intensive OT and PT to regain flexibility and strength--this would happen either in a skilled nursing facility or on an acute rehab unit within a hospital. Take a breath--this is all new territory, but you've totally got this. Just make sure you are using your support resources (family, friends, etc.)...sorry, I'm a psychologist...

I just talked to my mom and she is going to come with me on Thursday. She’s like me, or more accurate I’m like her, and we will both be very dialed in to the meeting. She’ll have a list of questions just like I will and will make sure I understand the plan going forward.

Maybe I’m 100% wrong but I’m under the impression that Richard will stay in the hospital until he’s ready to come home. Things may have changed though since the last time I talked to a doctor. I’ve never dealt with anyone in a situation like this before so I don’t really know. I’ve been kinda looking to see what’s available for rent in terms of a house with no stairs. Or, at least, a bedroom and bathroom on the main floor. If need be, he can come home here and we can put a bed in the front room.

I’m not going to think too far ahead, but, I like knowing the path so I can start preparing for it. I’m not a big fan of flying by the seat of your pants.

Tomorrow’s got a lot going on. A neurologist appointment, my 20 year since diagnosis date, going to see Richard, and it’s been two weeks since this all started.

My Jets play tonight so it will be a good distraction for a few hours.

 

[Dan Murphy]

Tomorrow’s got a lot going on. A neurologist appointment, my 20 year since diagnosis date, going to see Richard, and it’s been two weeks since this all started.

's You're strong, Kim.

What's the internal temperature of a Ton Ton?



Luke warm

 

[Dan Murphy]

Dan, in all the years on the DIS I've never known you to share a joke!!! Very good, sir!!

Kim, if many of us are sharing jokes, all must be getting better especially for Richard. May he have the joy of at least a chuckle.

Really?


Well, we usually don't get many joke requests, do we?

 

[kimblebee]

just a quick positive note before I go to bed.

My daughter is gone and I miss her so, so much. Not just because she’s my child, but she’d be such a nice distraction. Just some noise in the house.

Anyway, she’s been bored lately because she used all her data for the month and her wifi was down too. So, last night, for whatever reason, this child of mine decided to draw evebrows on her forehead. It doesn’t sound like much, but the pictures she sent me have my sides hurting from laughing so hard. Like, tears were rolling down my cheeks and I could hardly breathe. We watched RuPauls Drag Race when she was home..we’d binge a season in two days lol and when she put her glasses on, it covered her real eyebrows and she just looked like the start of a drag transformation. I’m not doing it justice but it was hilarious.

I haven’t laughed like that in probably three weeks so it felt so good to have some pure joy for a few minutes.

That and the fact the Jets won (sorry/not sorry Isles fans) and I’m going off to bed a lot happier than I have been in a long time.

Hope everyone has a good night and a good day tomorrow

 

[sonnyjane]

Yeah, it’s a no go. I’m also not allowed to spend the night. Well, they said they wouldn’t tell me no but it is strongly discouraged.

I haven’t been up to see him, he said he’s not really up for a visit. I want to listen to him but I also want to force my way in and demand he talk to me. We did talk for half an hour on the phone and that’s a new record..maybe even from when we first met LOL
I have a dr appt tomorrow afternoon and then I’ll head to the hospital for the evening.

A social worker from the hospital called today and I’m going to meet with him for about an hour on Thursday. I’m hoping I can convince this guy that Richard needs some long term, one on one help. I’m not going to spill all his mental health issues here but he suffers. A lot.

I think I’ve given up the hope that he’ll be home for Christmas or our anniversary. I know I have to stay positive for him, and I am when I’m talking to him, but in private I’m so scared. What if he never leaves the hospital? What happens if he comes home but we have to get a full time nurse for him? We can’t afford anything like that and his coverage from work all has limits. A private duty nurse is capped at $5000. That will get us what, a week?

Ok, deep breath..

Thank you everyone for the jokes. I am writing them down to take up to him. Maybe he won’t laugh but I’ll get a nurse at least.

Got the ambulance bill today..$340 for a 15 minute ride! Good thing we can be reimbursed but we have to pay first.


That’s all I have for now.

That’s a lot but it could be so much worse. My grandpa had a 20-minute ambulance ride that came to about $8,000 USD. You’re lucky you’re in Canada!

 

[PollyannaMom]

...A social worker from the hospital called today and I’m going to meet with him for about an hour on Thursday. I’m hoping I can convince this guy that Richard needs some long term, one on one help. I’m not going to spill all his mental health issues here but he suffers. A lot.

I think I’ve given up the hope that he’ll be home for Christmas or our anniversary. I know I have to stay positive for him, and I am when I’m talking to him, but in private I’m so scared. What if he never leaves the hospital? What happens if he comes home but we have to get a full time nurse for him? We can’t afford anything like that and his coverage from work all has limits. A private duty nurse is capped at $5000. That will get us what, a week?

Ok, deep breath..

Thank you everyone for the jokes. I am writing them down to take up to him. Maybe he won’t laugh but I’ll get a nurse at least.

Got the ambulance bill today..$340 for a 15 minute ride! Good thing we can be reimbursed but we have to pay first...

Sorry to hear about the bills. I didn't realize you paid anything up front in Canada.

Definitely talk to the social worker about setting up some mental health support!

I'm glad you have a list for the meeting, and that your DD was able to cheer you up last night, and I am loving the Star Wars jokes - I bet Richard will too!

Hang in there

 

[cabanafrau]

It makes me smile to read that you ended your day laughing until your sides hurt. I hope you slept peacefully and find it easy to overcome any obstacles you meet today.
I'll keep the prayers coming.

 

[ronandannette]

Sorry to hear about the bills. I didn't realize you paid anything up front in Canada.

Definitely talk to the social worker about setting up some mental health support!

I'm glad you have a list for the meeting, and that your DD was able to cheer you up last night, and I am loving the Star Wars jokes - I bet Richard will too!

Hang in there

Many, many things are not included in public health care and we need either private supplemental insurance or we pay OOP. This includes ambulance service, prescription meds, all dental and vision care, physiotherapy, chiropractic care, midwifery, counselling and therapy and probably a million more things.

 

[kimblebee]

Many, many things are not included in public health care and we need either private supplemental insurance or we pay OOP. This includes ambulance service, prescription meds, all dental and vision care, physiotherapy, chiropractic care, midwifery, counselling and therapy and probably a million more things.

I’m just glad that we will be reimbursed for the ambulance. $340 gone at this time of year would cancel Christmas.

 

[SharonZ]

I just talked to my mom and she is going to come with me on Thursday. She’s like me, or more accurate I’m like her, and we will both be very dialed in to the meeting. She’ll have a list of questions just like I will and will make sure I understand the plan going forward.

Maybe I’m 100% wrong but I’m under the impression that Richard will stay in the hospital until he’s ready to come home. Things may have changed though since the last time I talked to a doctor. I’ve never dealt with anyone in a situation like this before so I don’t really know. I’ve been kinda looking to see what’s available for rent in terms of a house with no stairs. Or, at least, a bedroom and bathroom on the main floor. If need be, he can come home here and we can put a bed in the front room.

I’m not going to think too far ahead, but, I like knowing the path so I can start preparing for it. I’m not a big fan of flying by the seat of your pants.

Tomorrow’s got a lot going on. A neurologist appointment, my 20 year since diagnosis date, going to see Richard, and it’s been two weeks since this all started.

My Jets play tonight so it will be a good distraction for a few hours.

He may actually be released to a step-down unit, until he's ready to come home. It would more than likely offer some physical therapy, including the medical treatment. I very much doubt that they will send him home before he's ready. When my father came out of the hospital, we put the hospital bed (with egg crate mattress) on the first floor in our family room, this way he didn't feel so isolated in the bedroom and it was easier for him to see visitors, and the advantage of the big screen TV. Initially he may need a port-a-potty, just for convenience. Good Luck, you are doing such a good job with such a difficult situation.

 

[Aladora]

We watched RuPauls Drag Race when she was home..we’d binge a season in two days lol and when she put her glasses on, it covered her real eyebrows and she just looked like the start of a drag transformation.

If you have Netflix there are a bunch of RPDR seasons there! I just finished binge re-watching some of my favourite seasons!

Many, many things are not included in public health care and we need either private supplemental insurance or we pay OOP. This includes ambulance service, prescription meds, all dental and vision care, physiotherapy, chiropractic care, midwifery, counselling and therapy and probably a million more things.

Midwifery is covered in almost all Provinces. Definitely BC, AB, ON, QC, MB, SK, NS, NWT cover midwives as part of the Provincial/Territorial Health Care. YK and PEI do not cover and it is not 100% clear whether or not it is covered in NFLD, NB or Nunavut.

 

[BLAZEY]

No updated yet, I just thought I’d share a story. Does it ever happen to you that you think about something or hear something and it just makes your heart hurt in a good way? Like it’s the embodiment of being hit in the feels? This story did that to me..

My sister and her kids came over the other night for dinner and movies. It was a great distraction. While she was here we got talking about Christmas and I mentioned to her that depending on things go with Richard, I might not be at Christmas dinner at her house.

She mentioned that she had been talking to my mom and my mom told her that if Richard is able to, we’ll get a day pass for him and she’ll just have Christmas dinner with her and my dad, just so it’s not too overwhelming for him. It’s so simple but the fact that she’s thinking like that just makes me feel really loved and supported. I know I am very lucky to be close with all my family. If I asked anyone for a kidney, they’d be in line the same day. I’d do it for them, too. In fact, (sorry for the ramble) when my uncle was still alive and going through liver failure due to hepatitis one thing thrown around was for a liver transplant. I would have been a perfect match, but my neurologist didn’t want me to do it due to my ms.

Anyway, I just wanted to share that story and talk to someone for a minute or two lol

Kim, it's a great story and something to seriously consider. It's not just the body that needs to heal but the soul/ spirit too. Having visitors or a short day out of the hospital can do so much for the mind and body when it come to healing.

My DH's Nana aka Great Nana had back surgery mid November 2017. She was supposed to be out 3 weeks later. Ended up not being the case and she got out in March 2018. She's 86. We all did see her as a family, all 8 of us, Christmas Day after clearing it with the doctor, we brought her a plate of all her favourites from dinner and met her at the cafeteria for dinner. The girls helped her unwrap her gifts. Doctor said it did so much for her spirit and drive to do her rehab exercises to see all the girls. We as individual families had gone to visit her in her room previously, she got to show off her great granddaughters to her roommate and the girls had her wall decorated with Christmas artwork to cheer her up.

 

[kimblebee]

Kim, it's a great story and something to seriously consider. It's not just the body that needs to heal but the soul/ spirit too. Having visitors or a short day out of the hospital can do so much for the mind and body when it come to healing.

My DH's Nana aka Great Nana had back surgery mid November 2017. She was supposed to be out 3 weeks later. Ended up not being the case and she got out in March 2018. She's 86. We all did see her as a family, all 8 of us, Christmas Day after clearing it with the doctor, we brought her a plate of all her favourites from dinner and met her at the cafeteria for dinner. The girls helped her unwrap her gifts. Doctor said it did so much for her spirit and drive to do her rehab exercises to see all the girls. We as individual families had gone to visit her in her room previously, she got to show off her great granddaughters to her roommate and the girls had her wall decorated with Christmas artwork to cheer her up.

He would never be approved for a day out right now. He’s 100% dependant for feeding and toileting (cathater) and ever repositioning in bed. He’s have to have 2 nurses accompany him and he still can’t sit. I’d love to bring him home for a few hours but we’re not at that point yet.

I went and saw him for an hour today. I fed him lunch and he ate the most I’ve seen him eat in two weeks. It’s still a far cry from what he used to eat but, it’s an improvement. I’m going to spend the afternoon with him tomorrow after I meet with the social worker. At least that’s what the plan is..it will depend how he’s doing tomorrow.

Good news, I had my bloodwork done today and my white blood cells are at the highest they’ve almost ever been. Normal levels are 1.0-3.3 and I’m at 1.17. It’s barely above normal but given the fact I was at 0.0 six months ago, I’ll take it.