Positive thoughts please-ups and downs p.42

[jo-jo]

For several months we had a hospital bed in our family room and I slept upstairs. Every night next to his bed, he would have a phone, (along with water and stuff) so if he needed me he could call my cell phone.

Athough my DH was more mobile than Richard will be, one challenge we had was bathing with a foot long incision with staples and stuff and bags coming through the stomach and not being about to use steps. The hospital gave us a "soap" that doesn't need to be rinse off. I think there are cleaning towels that campers might use to freshen up. I'm hoping someone can add some other info in this area.

 

[anniemae]

Sounds like he would need an aide to come in and help at home with basic things. Did they talk to you about an aide? I'm not sure how that works with Canadas health care system. It seems like sending him home with no aide would be too much for you. I believe you said Richard is a large man, and that you have your own health issues. It seems too much for you to take on, but maybe I am wrong.

 

[gillep]

I am sorry you have received such overwhelming news, make sure to take care of yourself and don't worry about venting to us. My husband hurt his back very badly last year and was pretty much unable to move unassisted for a while, it can be very overwhelming, and questions will come to you at all times that you never thought of before, so make sure to carry around a notebook or use your phone to jot down any questions you have when they come up. I would be shopping in the grocery store and all of a sudden some question would come to me that I wanted to discuss with him or his doctor and I wanted to make sure that I didn't forget it since I could never think of these things when I was actually sitting down ready to make a list for the doctor.

 

[mumto3girls]

This does sound a bit overwhelming. I am sorry for what you are going through. Hopefully you will have a aides/nurses/therapists to help you through the days ahead. And I certainly wish for you that it is temporary and very short term.

 

[Meriweather]

Best wishes. Sounds more rough road ahead....but he'll be home!
Enjoy the time with Grace

 

[kimblebee]

I have read this often but not checked in. I am a physical therapist. Make sure he has a PT order the proper home care equipment. He will need a drop arm commode and removable arm wheelchair is he is non-weight bearing both feet. And he should have home PT to teach him and you how to manage in your home. This is exactly the kind of PT I did and loved. I wish that I could help you.

Thank you for the advice. I may be bugging you for the next while with more questions.

Sounds like he would need an aide to come in and help at home with basic things. Did they talk to you about an aide? I'm not sure how that works with Canadas health care system. It seems like sending him home with no aide would be too much for you. I believe you said Richard is a large man, and that you have your own health issues. It seems too much for you to take on, but maybe I am wrong.

I am talking to someone later and I will definitely be asking about an aide. I think that is something that we would have to pay for though, and then be reimbursed. You’re right though, I would physically be able to do everything that’s required.

 

[CdnCarrie]

I imagine that he would get some type of home care service.
Can you start looking for somewhere else to rent?

 

[robinb]

Talk about good news/bad news! I'm going to focus on the good news! Richard is coming HOME !

 

[Twilight Sparkle]

That is a lot to process, Kimblebee. I'm so sorry.

 

[frog3101]

The only advice I can offer has mostly already been stated. Take the time now while he is still in the hospital to look at all the resources you have. Ask around to people you know too, help can sometimes be found in the least expected places. As somebody else stated, make sure to take care of yourself during this too, you will be no good to anybody if you are not up to par. This is a tough situation, we are all pulling for you.

 

[marcyleecorgan]

Being together is the important part. Good to hear that they are planning on discharging him soon.
*thinking happy thoughts*

 

[Breezy_Carol]

Thank you for the advice. I may be bugging you for the next while with more questions.

I am glad to answer questions, if I can. Here in Maryland, I could get my patients some medical equipment from the local Lions club. You may have some service organizations that can help with equipment. I would say home renovations too, but not sure they would do that when you rent.

 

[kimblebee]

I imagine that he would get some type of home care service.
Can you start looking for somewhere else to rent?

Yeah, we’re getting a wheelchair loaned from some program and a nurse will be coming by for wound care. When we do the home visit next week they’ll be better able to see what other help I/we need.

I have put the call out on Facebook for everyone to share that I’m looking for a new place. I put an ad on kijiji and I’ll start checking online too.

I am glad to answer questions, if I can. Here in Maryland, I could get my patients some medical equipment from the local Lions club. You may have some service organizations that can help with equipment. I would say home renovations too, but not sure they would do that when you rent.

We are getting a wheelchair loaned from some program and getting set up with handitransit. Not sure what it’s called for you but here it’s an offshoot of our transit system and it’s either a bus or a accessible car or van that can be used for transport and it only costs bus fare. The ot lady I spoke with today assured me they are going to do everything they can to make this as ‘easy’ as possible for us.

 

[lisaviolet]

I know nothing about Manitoba's home health care system. But good news is that I have found Ontario's to be excellent, on two distinct occasions. Not perfect but excellent. I can't imagine the two provinces would be too far off Kimblebee.

The only negative, and excessive waste in my opinion, was the constant interviewing instead of sharing resources/professional notes. So heads up there.

My father was palliative at home so we got a lot, care and equipment, at no cost. But regardless do know everyone will work for you to get you what you need kimblebee. I think you will be pleasantly surprised at the commitment to help you with everything. I found PTs and OTs to be the best at problem solving and contacts for a myriad of issues.

Someone will oversee everything. People will be available to you so that you don't feel abandoned with this situation or overwhelmed. Keep the faith there.

There are organizations that will give you equipment for free and/or low cost, if you need items going forward. I did not have to use them for either of my parents, but do know they exist. If they exist in the Toronto area, they exist in Winnipeg.

A couple of insights -

*most professionals are wonderful, compassionate and skilled. However, this is your house. Do not hesitate to communicate if any situation/person is not the best fit. It might seem like a revolving door at times - remember it is your door.

*don't forget to do the disability credit on your taxes when the time comes

*get a file for receipts

*Amazon is a dream company for caregiving needs. There are huge bed pads that are washable, get some. You probably saw them at the hospital.
They are great for a myriad of issues - positioning the most.
Throwaway blue ones are great too. Not the greatest for the enivironment but handy.

*vent here and look after yourself as best you can. We all know you love Richard but stress is stress kimblebee.

*Sometimes when things suddenly change in care you can feel overwhelmed. You will deal. You will get help. You will get through. Remember that in those moments.

*As for not wanting to/venting about the new areas of care re: toileting (I get it). Well, it is what it is. Accept it now. It will simply become getting things done. Just another check off for the day.

*practical - go to Dollarama - use those colourful bags with the ties in the commode. Life will be easier.

*Oh and don't hesitate to have your own boundaries kimblebee. Richard is vulnerable, that could indeed make him demanding at times. Set your limits very early in care, lovingly but firmly.

*None of my business but on your very hardest days try totally flipping the switch and remember to tell him how proud you are of him - that he has pushed through so much! I can imagine his happiness to be home and with you. But also his fears right now surrounding having a myriad of needs for his wife, especially being a man. Totally vulnerable moment for you both. Love sent.

---------

And finally you have him home! That's lovely.

 

[ronandannette]

Yeah, we’re getting a wheelchair loaned from some program and a nurse will be coming by for wound care. When we do the home visit next week they’ll be better able to see what other help I/we need.

I have put the call out on Facebook for everyone to share that I’m looking for a new place. I put an ad on kijiji and I’ll start checking online too.



We are getting a wheelchair loaned from some program and getting set up with handitransit. Not sure what it’s called for you but here it’s an offshoot of our transit system and it’s either a bus or a accessible car or van that can be used for transport and it only costs bus fare. The ot lady I spoke with today assured me they are going to do everything they can to make this as ‘easy’ as possible for us.

Oh Hon - my heart goes out to you. I would also dread and fear the idea of becoming a full-time caregiver for my spouse - it doesn't mean you don't totally love him. How does he feel about coming home under these conditions? "Easy as possible" may still not be feasible and I think you ought to be brutally honest in assessing that - for both your sakes.

I'd have a deep heart-to-heart with Richard. Perhaps he doesn't feel good about what this means for you or maybe wouldn't even feel secure at home with absolutely zero mobility. If you have any doubt in your minds, you must bluntly tell your medical team (with the hospital social worker's support if needed) that you simply CANNOT manage at home right now. They have a duty to ensure his safety upon discharge. It's a tough, tough position to take but it's what I'd be doing in your situation. Grace and peace to you. I'm so sorry both of you are having to go through this.

 

[lisaviolet]

Oh Hon - my heart goes out to you. I would also dread and fear the idea of becoming a full-time caregiver for my spouse - it doesn't mean you don't totally love him. How does he feel about coming home under these conditions? "Easy as possible" may still not be feasible and I think you ought to be brutally honest in assessing that - for both your sakes.

I'd have a deep heart-to-heart with Richard. Perhaps he doesn't feel good about what this means for you or maybe wouldn't even feel secure at home with absolutely zero mobility. If you have any doubt in your minds, you must bluntly tell your medical team (with the hospital social worker's support if needed) that you simply CANNOT manage at home right now. They have a duty to ensure his safety upon discharge. It's a tough, tough position to take but it's what I'd be doing in your situation. Grace and peace to you. I'm so sorry both of you are having to go through this.

Although I just gave some insights on making life as a caregiver easier,
and understanding the system, I do think Annette's thoughts are valid.

If there is one thing I have learned, and accepted in other loved ones, it is that not everyone is built for the stress (Please know I do not mean that in any condescending or holier than thou manner). And that's fine. Everyone has their strengths in life. And Richard's best interests are paramount. As are yours kimblebee, especially given your own health concerns.

 

[flyingdumbo127]

Just so thrilled and thankful Richard is coming home! Praise God.

PLEASE do remember to take care of yourself and take time for yourself! Also, I would certainly pray and hope no one would simply be dropping Richard off! You will have support and definitely do not be afraid to make sure those support people are a good fit!

Always know all of us on here are rooting for you both!

 

[maxaroni]

I’m so sorry to hear of this setback for Richard. Thinking of you.

 

[superme80]

 

[kimblebee]

I know nothing about Manitoba's home health care system. But good news is that I have found Ontario's to be excellent, on two distinct occasions. Not perfect but excellent. I can't imagine the two provinces would be too far off Kimblebee.

The only negative, and excessive waste in my opinion, was the constant interviewing instead of sharing resources/professional notes. So heads up there.

My father was palliative at home so we got a lot, care and equipment, at no cost. But regardless do know everyone will work for you to get you what you need kimblebee. I think you will be plesantly surprised at the commitment to help you with everything. I found PTs and OTs to be the best at problem solving and contacts for a myriad of issues.

Someone will oversee everything. People will be available to you so that you don't feel abandoned with this situation or overwhelmed. Keep the faith there.

There are organizations that will give you equipment for free and/or low cost, if you need items going forward. I did not have to use them for either of my parents, but do know they exist. If they exist in the Toronto area, they exist in Winnipeg.

A couple of insights -

*most professionals are wonderful, compassionate and skilled. However, this is your house. Do not hesitate to communicate if any situation/person is not the best fit. It might seem like a revolving door at times - remember it is your door.

*don't forget to do the disability credit on your taxes when the time comes

*get a file for receipts

*Amazon is a dream company for caregiving needs. There are huge bed pads that are washable, get some. You probably saw them at the hospital.
They are great for a myriad of issues - positioning the most.
Throwaway blue ones are great too. Not the greatest for the enivironment but handy.

*vent here and look after yourself as best you can. We all know you love Richard but stress is stress kimblebee.

*Sometimes when things suddenly change in care you can feel overwhelmed. You will deal. You will get help. You will get through. Remember that in those moments.

*As for not wanting to/venting about the new areas of care re: toileting (I get it). Well, it is what it is. Accept it now. It will simply become getting things done. Just another check off for the day.

*practical - go to Dollarama - use those colourful bags with the ties in the commode. Life will be easier.

*Oh and don't hesitate to have your own boundaries kimblebee. Richard is vulnerable, that could indeed make him demanding at times. Set your limits very early in care, lovingly but firmly.

*None of my business but on your very hardest days try totally flipping the switch and remember to tell him how proud you are of him - that he has pushed through so much! I can't imagine his happiness to be back home and with you. But also his fears right now surrounding having a myriad of needs for his wife, especially being a man. Totally vulnerable moment for you both. Love sent.

---------

And finally you have him home! That's lovely.

Thank you so much for this. I felt a big cry coming and reading this let me do it. It was very cathartic. You are right, I have been talking like I can do everything and give him all the support that he’ll need but I need to start being honest with everyone. I can’t take on more than I can handle. It won’t do either of us any good. I know it’s dumb, but I feel like if I don’t do enough, people will judge that I’m not doing enough.

Oh Hon - my heart goes out to you. I would also dread and fear the idea of becoming a full-time caregiver for my spouse - it doesn't mean you don't totally love him. How does he feel about coming home under these conditions? "Easy as possible" may still not be feasible and I think you ought to be brutally honest in assessing that - for both your sakes.

I'd have a deep heart-to-heart with Richard. Perhaps he doesn't feel good about what this means for you or maybe wouldn't even feel secure at home with absolutely zero mobility. If you have any doubt in your minds, you must bluntly tell your medical team (with the hospital social worker's support if needed) that you simply CANNOT manage at home right now. They have a duty to ensure his safety upon discharge. It's a tough, tough position to take but it's what I'd be doing in your situation. Grace and peace to you. I'm so sorry both of you are having to go through this.

He always puts me first. He knows this is going to be a strain on me. That’s why he’s been working so hard, so my load won’t be too much. He’s not happy about having a wheelchair as part of his life for now. He feels like he’s failed despite me and everyone else telling him to focus on how far he’s come.

Although I just gave some insights on making life as a caregiver easier,
and understanding the system, I do think Annette's thoughts are valid.

If there is one thing I learned, and accepted in other loved ones, it is that not everyone is built for the stress (Please know I do not mean that in any condescending or holier than thou manner). And that's fine. Everyone has their strengths in life. And Richard's best interests are paramount. As are yours kimblebee, especially given your own health concerns.

I agree. It will take time for us to adjust to all of this.

Sorry if this is just all rambling. I don’t feel like I’m making sense tonight. I need about 15 hours sleep to be able to tackle all this.