Positive thoughts please-ups and downs p.42

[AnnaS]

Just caught up with all the updates. Life happens and I have not received any notifications.

Happy to read of Richard's improvements. Continued prayers for you both.

You are not rambling. It helps to write it down and let it out.

 

[ronandannette]

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.




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.



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.

I am sending you ALL the hugs. The last thing anybody should do is judge you, especially if they are not right in there striving shoulder-to-shoulder. And remember that the only judgement you’re likely to get is from people who have no freaking clue what you’re actually going through. @lisaviolet and I both have had the experience of caring for our infirm parents and although we handled things differently from one another, I know we would express nothing but the utmost respect, having been profoundly shaped by the experience.

So, so many things need to be factored in - your own health and temperament; your finances and the need/ability to make a living; the practical realities of your home environment and perhaps most importantly - what HE wants. This is quite different than an elderly parent situation. For many men their hearts and minds can be broken by feeling so deminished and dependent on their wives. He may not want you to take on this role, and for more reasons that just how hard it will be on you. I hope the two of you are able to genuinely express yourselves to one another and stand together to get the best outcome.

I also hope you have a little time to get your heads in the zone before anything actually happens. The idea of you having a long, long sleep to mentally and emotionally regroup is a good one.

 

[marcyleecorgan]

You'd better believe that all of us would totally be helping you out with cleaning and re-arranging furniture and shopping and letting you sleep for 15 hours... if only we weren't separated by lonesome highways. But we have the Internet to tell you how we are with you in mind and prayer/positive thought.

 

[kimblebee]

I am sending you ALL the hugs. The last thing anybody should do is judge you, especially if they are not right in there striving shoulder-to-shoulder. And remember that the only judgement you’re likely to get is from people who have no freaking clue what you’re actually going through. @lisaviolet and I both have had the experience of caring for our infirm parents and although we handled things differently from one another, I know we would express nothing but the utmost respect, having been profoundly shaped by the experience.

So, so many things need to be factored in - your own health and temperament; your finances and the need/ability to make a living; the practical realities of your home environment and perhaps most importantly - what HE wants. This is quite different than an elderly parent situation. For many men their hearts and minds can be broken by feeling so deminished and dependent on their wives. He may not want you to take on this role, and for more reasons that just how hard it will be on you. I hope the two of you are able to genuinely express yourselves to one another and stand together to get the best outcome.

I also hope you have a little time to get your heads in the zone before anything actually happens. The idea of you having a long, long sleep to mentally and emotionally regroup is a good one.

He is not happy at ALL to be coming home in a wheelchair. He has it in his head that he’s going to dump his wheelchair in the garage and not use it. This will be very detrimental to his overall health and will cause daily arguments. I’m actually going to send up my dad to tak to him sometime next week. Not to yell or anything (my dad doesn’t have that in his nature) but just to kind of tell him he has to listen to what the doctors tell him to do because it’s not fair to me to have to fight him on this. I am a big fan of doctors and trust that everything they do is in my best interest. Him...not so much.

Ugh

You'd better believe that all of us would totally be helping you out with cleaning and re-arranging furniture and shopping and letting you sleep for 15 hours... if only we weren't separated by lonesome highways. But we have the Internet to tell you how we are with you in mind and prayer/positive thought.

Thank you <3

 

[kimblebee]

I forgot to add that the doctors finally gave us an official diagnosis of Septic Arthritis. They also told us that his case was considered near death. They didn’t really think he’d survive when he was first admitted. I’m glad I didn’t know it at the time because I wouldn’t have left his side, even if they tried to force me too.

 

[jo-jo]

You'd better believe that all of us would totally be helping you out with cleaning and re-arranging furniture and shopping and letting you sleep for 15 hours... if only we weren't separated by lonesome highways. But we have the Internet to tell you how we are with you in mind and prayer/positive thought.

And if friends or family say "can I drop off dinner or go to the store for you", you say YES. Now is the time for you to accept help. You can do something nice for them down the road sometime.

 

[Pea-n-Me]

He is not happy at ALL to be coming home in a wheelchair. He has it in his head that he’s going to dump his wheelchair in the garage and not use it. This will be very detrimental to his overall health and will cause daily arguments. I’m actually going to send up my dad to tak to him sometime next week. Not to yell or anything (my dad doesn’t have that in his nature) but just to kind of tell him he has to listen to what the doctors tell him to do because it’s not fair to me to have to fight him on this. I am a big fan of doctors and trust that everything they do is in my best interest. Him...not so much.

Consider doing a contract with him.

IF you are going to bring him home and agree to care for him, as well as essentially oversee all his care, then he HAS to agree to comply with all medical recommendations that include activity restrictions, dietary guidelines, medications, etc. If he breaks the contract, then there will be little choice but to send him either to a skilled nursing facility or back to the hospital if anything happens to him (like he injures something, his blood sugars rise, or he starts retaining fluid again, etc.). That wouldn't be a good thing to happen because they will see that he is not capable of maintaining good health on his own - or with you - and that could play into future decisions about him, some of which could be critical or life saving. You need to talk to him about this before agreeing to care for him at home (your Dad can be there, too, if it helps you), but Richard needs to understand you're serious (and you need to be serious!). It shouldn't be a constant struggle to argue with him about these types of things, you'll be done with that in less than a day! Set the stage before you go home for what the expectations are going to be and see them through - for his benefit, and for yours. It's a lot to ask of someone so he has to do his part. Be strong.

If it helps to know, I am in a similar position right now with my mother, who is 93. She fractured her hip just after Christmas, had to have it repaired, spent almost a month at rehab, and is now home under my care. Granted, I am a nurse, but it's still been difficult in a lot of ways on me personally. I had to stay in the hospital with her for the week as she got delerium from the opioids. They couldn't even touch her she was in so much pain initially, so she didn't get very far with moving around before she went to rehab. I had to go to the rehab almost every day to keep up with everything, make medical decisions for her, and deal with the minutia of things that happen there (billing, departmental, etc.), as well as take home her laundry to clean, then return (and half of it went missing, I think they used some of her clothes on other patients - so in the midst of all this I had to go out and buy her more clothes!). While she was there we also gave her in-law apartment a deep cleaning, made repairs, and had to make changes for safety after having an inspection by a PT and OT who visited before she came home. It was a lot! And I am exhausted!

She came home this week and is not yet near at the level she was before this all happened, so I have to help her with just about everything, as well as prepare her meals, and she developed a UTI so she's been sick for the last couple of days. Plus we've had a slew of people coming in and out that we've never had before - visiting nurse, PT, OT, etc. It seems something is scheduled every day! (And I thought I was in the clear since the kids were finally in college!) I had to get a baby monitor so I can hear her at night from my bedroom if she has to get up to go to the bathroom, etc. (It reminds me of when the babies were born!) I am fortunate to have the help of my family, but the lion's share falls on me. I am thinking about training a HS girl I know to come in to do some light cleaning and helping which will help me a bit. (DD is super helpful but she's in a tough semester right now and I don't want to detract from her studies.) I feel fortunate to be able to do it, and Mom is appreciative. But she sometimes doesn't realize I also have a job to go to and other family, home and health matters to take care of myself, too. I am behind with everything! But I am hopeful things will improve over the next several weeks. Today she got herself up and dressed (I'd left her clothes out) and was sitting in her chair when I got up, which felt to me like a baby step in the right direction. Sadly, we've also found out that the cancer she had last year has metastasized, and we haven't even actually dealt with that yet (that's next week!). I know this won't be forever and I am trying to make whatever time she has left comfortable and pleasant for her. She is the last of her generation so it's been hard for her to hear this news (which we also got over Christmas, sadly), but she still has the will to live and improve so I am supporting her in that as long as it's realistic. She believes in the power of prayer, as do I, so if anyone has any spare ones, we're grateful to get them.

Sorry to interject, Kim, but I wanted to let you know you're not alone!

 

[marcyleecorgan]

Consider doing a contract with him.

IF you are going to bring him home and agree to care for him, as well as essentially oversee all his care, then he HAS to agree to comply with all medical recommendations that include activity restrictions, dietary guidelines, medications, etc. If he breaks the contract, then there will be little choice but to send him either to a skilled nursing facility or back to the hospital if anything happens to him (like he injures something, his blood sugars rise, or he starts retaining fluid again, etc.). That wouldn't be a good thing to happen because they will see that he is not capable of maintaining good health on his own - or with you - and that could play into future decisions about him, some of which could be critical or life saving. You need to talk to him about this before agreeing to care for him at home (your Dad can be there, too, if it helps you), but Richard needs to understand you're serious (and you need to be serious!). It shouldn't be a constant struggle to argue with him about these types of things, you'll be done with that in less than a day! Set the stage before you go home for what the expectations are going to be and see them through - for his benefit, and for yours. It's a lot to ask of someone so he has to do his part. Be strong.

Sorry to interject, Kim, but I wanted to let you know you're not alone!

Yep this will be a new challenge for BOTH of you, but together you can make it work for the both of you.

 

[lovemygoofy]

There's no way he'd come home if he is hell bent on doing what he wants to the detriment of his and your health. You will both end up in the hospital if attitude doesn't change.
I would make sure he understood very very clearly that he will have to stay in the hospital, go to skill nursing facility or whatever temporary care if in Canada if he did not comply with all the medical requirements. It is not at all fair to you that he wants to come home and do what he wants. That's to an extent what got him in this problem. I remember pages ago you mentioning his diabetes not properly managed.

Together at the hospital practice how to help him transfer from his chair to the bed or toilet or even the car. Get him comfortable in the wheel chair there and let him get comfortable you seeing him in the chair and having to do things in a more different fashion than he would want you to see him. It's incredibly humbling to have to allow such intimate help from your spouse and to swallow that pride and ego and embarrassment is so hard. I had the same problem after my hysterectomy and know I will again with this next surgery.

Getting used to the routine in the hospital will make it seem semi normal by the time he gets home and you both will have it past the shock of this new phase. Do not allow him to turn down the care at home because he wants to save his ego. He needs to understand his risking his life and your health and that he and you have been fighting together to save him and I'd be damn if ego gets in the way now that he is on the road to healing.

I know you love Richard. It pours out in all your words and I hope you can find strength in your love to help him do what's best even if he doesn't want to all the time. It sucks be one that has to be person bringing the reasoning and enforcer but I think you have it in you. Dig deep and remember it's about love.

 

[Kitty 34]

I'm just going to send many s your way, Kim. You will definitely need them in the coming months.

 

[low-key]

just breathe for right now

 

[sasywtch]

The Walmart here has temporary type metal ramps that do not need construction, so maybe that would work with your landlord? I don't know if Canada has what we have here through Social Services. They come out and access the need, how many hours and then pay someone to come out and do things like helping to go to the bathroom/change diapers/drain catheters, fix meals, clean etc. The maximum hours here is 280 a month. We do have paratransit that takes my daughter where she needs to go. Being a caregiver is rough so if someone does come in for a few hours, go do something for yourself even if it's grocery shopping.

 

[kimblebee]

And if friends or family say "can I drop off dinner or go to the store for you", you say YES. Now is the time for you to accept help. You can do something nice for them down the road sometime.

I do accept help when offered but mostly I ask for help with something and everyone jumps in to offer help. I need a lot of shoveling done for this home visit so one of my brothers is coming over after work Tuesday night to do it.

Consider doing a contract with him.

IF you are going to bring him home and agree to care for him, as well as essentially oversee all his care, then he HAS to agree to comply with all medical recommendations that include activity restrictions, dietary guidelines, medications, etc. If he breaks the contract, then there will be little choice but to send him either to a skilled nursing facility or back to the hospital if anything happens to him (like he injures something, his blood sugars rise, or he starts retaining fluid again, etc.). That wouldn't be a good thing to happen because they will see that he is not capable of maintaining good health on his own - or with you - and that could play into future decisions about him, some of which could be critical or life saving. You need to talk to him about this before agreeing to care for him at home (your Dad can be there, too, if it helps you), but Richard needs to understand you're serious (and you need to be serious!). It shouldn't be a constant struggle to argue with him about these types of things, you'll be done with that in less than a day! Set the stage before you go home for what the expectations are going to be and see them through - for his benefit, and for yours. It's a lot to ask of someone so he has to do his part. Be strong.

If it helps to know, I am in a similar position right now with my mother, who is 93. She fractured her hip just after Christmas, had to have it repaired, spent almost a month at rehab, and is now home under my care. Granted, I am a nurse, but it's still been difficult in a lot of ways on me personally. I had to stay in the hospital with her for the week as she got delerium from the opioids. They couldn't even touch her she was in so much pain initially, so she didn't get very far with moving around before she went to rehab. I had to go to the rehab almost every day to keep up with everything, make medical decisions for her, and deal with the minutia of things that happen there (billing, departmental, etc.), as well as take home her laundry to clean, then return (and half of it went missing, I think they used some of her clothes on other patients - so in the midst of all this I had to go out and buy her more clothes!). While she was there we also gave her in-law apartment a deep cleaning, made repairs, and had to make changes for safety after having an inspection by a PT and OT who visited before she came home. It was a lot! And I am exhausted!

She came home this week and is not yet near at the level she was before this all happened, so I have to help her with just about everything, as well as prepare her meals, and she developed a UTI so she's been sick for the last couple of days. Plus we've had a slew of people coming in and out that we've never had before - visiting nurse, PT, OT, etc. It seems something is scheduled every day! (And I thought I was in the clear since the kids were finally in college!) I had to get a baby monitor so I can hear her at night from my bedroom if she has to get up to go to the bathroom, etc. (It reminds me of when the babies were born!) I am fortunate to have the help of my family, but the lion's share falls on me. I am thinking about training a HS girl I know to come in to do some light cleaning and helping which will help me a bit. (DD is super helpful but she's in a tough semester right now and I don't want to detract from her studies.) I feel fortunate to be able to do it, and Mom is appreciative. But she sometimes doesn't realize I also have a job to go to and other family, home and health matters to take care of myself, too. I am behind with everything! But I am hopeful things will improve over the next several weeks. Today she got herself up and dressed (I'd left her clothes out) and was sitting in her chair when I got up, which felt to me like a baby step in the right direction. Sadly, we've also found out that the cancer she had last year has metastasized, and we haven't even actually dealt with that yet (that's next week!). I know this won't be forever and I am trying to make whatever time she has left comfortable and pleasant for her. She is the last of her generation so it's been hard for her to hear this news (which we also got over Christmas, sadly), but she still has the will to live and improve so I am supporting her in that as long as it's realistic. She believes in the power of prayer, as do I, so if anyone has any spare ones, we're grateful to get them.

Sorry to interject, Kim, but I wanted to let you know you're not alone!

He seems to be more accepting now. I think he just needed time to adjust to the idea. I’m sure we’ll still butt heads every once in a while but not as much as I thought we would be.

I’m honestly not sure that the hospital would just take him back if they knew he wasn’t following orders. It’s not a business for us, so we aren’t the ones who call the shots. Care homes
Cost money that we just don’t have so that’s not an option either.

There's no way he'd come home if he is hell bent on doing what he wants to the detriment of his and your health. You will both end up in the hospital if attitude doesn't change.
I would make sure he understood very very clearly that he will have to stay in the hospital, go to skill nursing facility or whatever temporary care if in Canada if he did not comply with all the medical requirements. It is not at all fair to you that he wants to come home and do what he wants. That's to an extent what got him in this problem. I remember pages ago you mentioning his diabetes not properly managed.

Together at the hospital practice how to help him transfer from his chair to the bed or toilet or even the car. Get him comfortable in the wheel chair there and let him get comfortable you seeing him in the chair and having to do things in a more different fashion than he would want you to see him. It's incredibly humbling to have to allow such intimate help from your spouse and to swallow that pride and ego and embarrassment is so hard. I had the same problem after my hysterectomy and know I will again with this next surgery.

Getting used to the routine in the hospital will make it seem semi normal by the time he gets home and you both will have it past the shock of this new phase. Do not allow him to turn down the care at home because he wants to save his ego. He needs to understand his risking his life and your health and that he and you have been fighting together to save him and I'd be damn if ego gets in the way now that he is on the road to healing.

I know you love Richard. It pours out in all your words and I hope you can find strength in your love to help him do what's best even if he doesn't want to all the time. It sucks be one that has to be person bringing the reasoning and enforcer but I think you have it in you. Dig deep and remember it's about love.

He spends most of his day in a chair now and is able to get around in it without any help. He goes through the hospital a few times a day building up his stamina and arm strength.

The Walmart here has temporary type metal ramps that do not need construction, so maybe that would work with your landlord? I don't know if Canada has what we have here through Social Services. They come out and access the need, how many hours and then pay someone to come out and do things like helping to go to the bathroom/change diapers/drain catheters, fix meals, clean etc. The maximum hours here is 280 a month. We do have paratransit that takes my daughter where she needs to go. Being a caregiver is rough so if someone does come in for a few hours, go do something for yourself even if it's grocery shopping.

The problem isn’t the actual ramp, it’s the fact that there’s four feet of snow in my front yard for a few more months lol

We are having a home visit sometime this upcoming week and then everyone will decide what help we need and it will be arranged. He doesn’t really need any medical help besides wound care, and that’s already set up. He will be able to stand up on his own to get from his chair to his bed and to the commode and everything. I’ll do the cooking and cleaning as I was doing before, and since he can’t right now. I’ll have a far better idea of everything we need once the visit happens.

 

[leebee]

Kim, when my husband was laid up for 2 months he found the worst part was not showering/feeling clean. On Amazon I found these waterless shampoo caps. We popped them in the microwave to warm them, then stuck them on his head and massaged. It wasn't a perfect shampoo, but it sure beat not washing his hair for 2 months. I think they were 5 for $20USD. They worked well enough- you might want to check them out.

Also HUGS... I know what it's like to get such a life-altering decision made for you. You can do it. It won't be easy, but it's worth it!

 

[kimblebee]

Kim, when my husband was laid up for 2 months he found the worst part was not showering/feeling clean. On Amazon I found these waterless shampoo caps. We popped them in the microwave to warm them, then stuck them on his head and massaged. It wasn't a perfect shampoo, but it sure beat not washing his hair for a month. I think they were 5 for $20USD. They worked well enough- you might want to check them out.

Also HUGS... I know what it's like to get such a life-altering decision made for you. You can do it. It won't be easy, but it's worth it!

He shaves his head so we don’t have to worry about that, at least lol

 

[jo-jo]

Kim, when my husband was laid up for 2 months he found the worst part was not showering/feeling clean. On Amazon I found these waterless shampoo caps. We popped them in the microwave to warm them, then stuck them on his head and massaged. It wasn't a perfect shampoo, but it sure beat not washing his hair for 2 months. I think they were 5 for $20USD. They worked well enough- you might want to check them out.

Also HUGS... I know what it's like to get such a life-altering decision made for you. You can do it. It won't be easy, but it's worth it!

When my DH was in the hospital, they had these wipes....looked like travel pack of baby wipes but instead of 4 by 4 sheets, they were maybe 8 by 10......they had about 8 wipes in a pack, was a no rinse soap type. You warm them in the microwave for about 20 secs. Again , not perfect but it helps.

Before DH issues, I had no idea what type of things were out there. Ask for suggests. I think sometime since nursing or PT people do this all the time, they forget us "common" people have no idea what's out there. It's like if someone ask you how do you make a peanut butter and jelly sandwich....we might think, how could you not know how to make one.

 

[jo-jo]

Did you have the home visit? How are things coming along?

 

[kimblebee]

Did you have the home visit? How are things coming along?

No home visit yet. Someone has been by to go be a quote on outside railings. Now I have to pass it on to our landlord. I know it’s the law but I really am expecting a fight from him on paying for adaptations that will be needed.

It’s going to be a few weeks before he comes home so I have time to get everything done first. He has been working on his bathroom fun and he is self sufficient now YAY. So, I might only be needed for disposal, which I can handle.

 

[jo-jo]

I hope the home visit happens soon. I'm sure you will feel a lot better to have everything in place well before Richard comes home.

 

[Meriweather]

Just hang in there. You will work our a routine....and hopefully he will follow what he is supposed to do to get better and also make it easier for you.
Glad you have help around