[kjm465]

Hello,

I'm looking to find out how others balance the wife/caregiver roles. Background: Hubby is incomplete C6/7 and was injured 11 years ago.

My hubby and I met 4 years ago through work and starting dating 2.5 years ago at which time he drew the line in the sand and said on our first date: "You're my friend, you're not my caregiver."

This attitude stayed pretty much the same as we progressed to girlfriend, fiance, and then wife. I have learned to do his care, and do while on vacation (we travel several times a year) and am comfortable with it. On a day-to-day basis though, Caregivers continue to be a part of our lives twice a day.

However, our current agency will not be offering services some summer and we are having trouble finding another agency that will provide comparable service. We both work full-time, and have been very fortunate to have been working with an agency that worked with us to manage a workable schedule up till now. Unfortunetly, where we live there is a 8-12 month waiting list to go on self-managed care (hiring people ourselves), meaning that until we qualify we are required by law to go with a government-picked agency, or have our funding cut off. Under any circumstances, I cannot be paid to do his care where we live.

That being said, I work as a Flight Attendant so having me and only me as the full-time caregiver isn't really an option either as my schedule is erratic and I can be on the road for days at a time.

I'm wondering how other couples have worked out the balance between the "spouse" role and the "caregiver" role. I find that while I am comfortable doing his care, it changes the dynamic of our relationship when I do it for any period of time. We know two other couples in similar situations, one the wife refuses to do any care at all, ever, and the other the wife refuses to even hire caregivers and has quit her job to look after her husband....I guess I'm looking for a balance.

Thoughts?

-K

This post has been edited by kjm465: 11 April 2009 - 07:43 PM

[Quad65]

Our situation is different. My wife and I have been married for a little over 30 years; we dated for a couple years before we tied the knot. Before we were married, I lived with my parents and my mother and younger brother helped with my care. My wife took over when we were married. We had no choice. There was no way we could afford a PCA and any insurance coverage for in-home nursing/personal care was extremely limited and prohibitively expensive.
So, we were stuck with each other and made the best of the situation. I worked out of the home full-time until I retired and became a full-time house-husband. I try to do absolutely as much as I can for myself and for her to put as little burden on her as possible. She gets me up in the morning and puts me to bed at night and also does the BM routine about twice a week. Most everything else I can do on my own while she is out working full-time now. I do most of the meal prep, cook, set the table, have dinner ready when she gets home, do laundry, load and empty the dishwasher, general tidying up around the house. I can sweep and mop the hard floors and vacuum occasionally, though it's getting harder with age. I keep the bills paid and do our taxes.

I don't drive since my van died, so she does the grocery shopping and running around. Our system works because it's built on love and mutual respect for each other and not putting an extra burden on each other. We do little things to lighten the others load.

[qbounce]

I like how Quad65 does it with a reasonable balance of shared duties. I hope to reach the same ability level soon too, and hopefully do most things unassisted.

On that note, I met my SO as my caregiver, so you can only guess how she feels about doing my care. Obviously it doesn't bother her in the least. But, as specified, I'm hoping to help do more on my own soon. (my profile explains more).


Since you obviously NEED carers due to your job, I suggest you do what's comfortable and works for you both. If you need to rest when home, allow carers to help out. I don't see a problem what-so-ever with separating the duties of carer and wife. I've read many threads here from wives of quads who took on so much responsibity that they couldn't seem to find any time for themselves. This is a recipe for disaster, and does form a catalyst that slowly causes resentment toward the spouse, and ultimately ends the marriage.

On the other hand, there are other wives/ spouses on here who do the care themselves and wouldn't even consider anyone else stepping in to help out.

I think you need to do what is most comfortable for you both. If he's alright with carers, and would rather you keep your role as spouse separate, than that's OK.

[newwife08]

My husband and I have only been married since August, and were together for over two years before that. He is a quad due to a birth injury, so he doesn't know any other way. In the very beginning, he didn't want me to do any of his cares unless I really had to. We have several services where we live that will cover carers as well as other types of medical needs.
Currently the only care that I deal with is getting him ready for bed at night. It just makes sense for me to do it rather than him having to get ready an hour before bed, when his carer used to come before we met. Other than that, I don't do any personal cares unless we go on vacation or are away from the house for extended periods of time. I do lots of helping out in the kitchen, but only to reach things, as he is a much better cook than I'll ever be.
It certainly can be hard to find the right level between carer and spouse, and sometimes it takes time to find just the right level of care before it begins to feel like you loose the intimacy of being the spouse.

[laisydaisy]

Hi
I'm a carer/support worker working for an agency who specialise in SCI. Assuming you are in the UK, I can recommend the company. Have a look at their website if this is appropriate for you: http://totalcommunitycare.net/
Hope this helps.

[Austyn]

My partner moved in with me 3 weeks ago so we are new at all this. He has carers who come in every morning so I can get off to work. They get him up in his chair and do his bowel programme and shower 3 times a week. Another one comes in 12-1 to get his lunch, empty bag etc. And another one comes in 3-4 to do anything else he needs as depending on my day, I may not be home til 6-6.30pm.

I take over from there and put him to bed etc (I'll leave the etc to your imagination!). I do everything on the weekends.

So far everyting is going pretty smoothly but i must say I am getting pretty tired. I don't seem to have a lot of time to myself and to get any time I have to either stay up after he's in bed or get up really early in the weekends but after getting up at 5.30am all week I really don't feel like doing that. We are still feeling our way around and I am sure in a little while things will be fine.

I just pleased I have a job I love and don't have to take on the role of full time carer. Our relationship would not last 5 minutes. I quit being a nurse 5 years ago and became a lawyer because I was getting too grumpy with patients!

[gordonr]

kjm465, on Apr 11 2009, 07:42 PM, said:

However, our current agency will not be offering services some summer and we are having trouble finding another agency that will provide comparable service. We both work full-time, and have been very fortunate to have been working with an agency that worked with us to manage a workable schedule up till now. Unfortunetly, where we live there is a 8-12 month waiting list to go on self-managed care (hiring people ourselves), meaning that until we qualify we are required by law to go with a government-picked agency, or have our funding cut off. Under any circumstances, I cannot be paid to do his care where we live.

Dear K,

I think you already know very well what you want.

The problem is that The Structure is not cooperating. What I think you must focus on is getting approved for the managed care program. 8-12 months looks like a lot, but it will pass quickly. In the meantime, you have got to stay in close touch with whatever bureaucrats are closest to your file. Get the agency as close to yur needs as you can, and fill in the spaces. This may involve some unfunded caregivers. I don`t know where you live, but there should be services that you can just buy, unless you are living in the hardcore socialist heartland.

Should you be forced to give up your job to look after your husband? No. Of course not. But this is what that phony "waiting list" is designed to do. It is designed to deny quality service to those who are not truly determined to get it. So you must simply refuse to get cheated in this way.

Make sure your papers are in order, and do what ever you have to do to bridge through this gap. Take a loan if you have to. The light is there at the end of the tunnel. But DO NOT opt out of the public system. Make sure your file is on the pile heading to the top

Best Regards,

Gordon

[kjm465]

Quote

The problem is that The Structure is not cooperating. What I think you must focus on is getting approved for the managed care program. 8-12 months looks like a lot, but it will pass quickly. In the meantime, you have got to stay in close touch with whatever bureaucrats are closest to your file. Get the agency as close to yur needs as you can, and fill in the spaces. This may involve some unfunded caregivers. I don`t know where you live, but there should be services that you can just buy, unless you are living in the hardcore socialist heartland.

Gordon, you hit the nail on the head. Luckily, there has been some serious improvement. I got in touch with three diffrerent MLAs (our local reps to the provincial government) one of whom happens to be a quad and they've got things moving. First of all our current agency won't be allowed to quit providing care until new care is in place - period - which is looking like October :-) We also found a local private agency that we like and the owner is in negotiations with the govenment to take over the contract...if this happens it will be win/win since we won't have to manage staffing, payroll, etc.

To anyone else in this kind of situation -- keep up the fight!

[gordonr]

kjm465, on Jul 6 2009, 10:22 PM, said:

Quote

The problem is that The Structure is not cooperating. What I think you must focus on is getting approved for the managed care program. 8-12 months looks like a lot, but it will pass quickly. In the meantime, you have got to stay in close touch with whatever bureaucrats are closest to your file. Get the agency as close to yur needs as you can, and fill in the spaces. This may involve some unfunded caregivers. I don`t know where you live, but there should be services that you can just buy, unless you are living in the hardcore socialist heartland.

Gordon, you hit the nail on the head. Luckily, there has been some serious improvement. I got in touch with three diffrerent MLAs (our local reps to the provincial government) one of whom happens to be a quad and they've got things moving. First of all our current agency won't be allowed to quit providing care until new care is in place - period - which is looking like October :-) We also found a local private agency that we like and the owner is in negotiations with the govenment to take over the contract...if this happens it will be win/win since we won't have to manage staffing, payroll, etc.

To anyone else in this kind of situation -- keep up the fight!

I'm glad to hear things are looking up.

Going after government representatives seems like aradical step, but there are times when it is the only avenue open. And you have the courage to do it. Good.

BTW I think I know the MLA you are talking about. He is from a WPG riding, am I right?

Best Regards,

Gordon

[kjm465]

Quote

BTW I think I know the MLA you are talking about. He is from a WPG riding, am I right?

Nope - Calgary Buffalo (Kent Hehr). I'm glad to hear that there's more than one Quad MLA out there though.

[buff]

i don't know why but this made me want to cry. this is how my boyfriend and i are. i read these posts about the paralyzed person getting lazy but my boyfriend won't let me do anything that he can do for himself. and we love eachother so much that i want to help him and he wants to do most if it himself. it works great. you just need a system in place.

Quad65, on Apr 11 2009, 08:51 PM, said:

Our situation is different. My wife and I have been married for a little over 30 years; we dated for a couple years before we tied the knot. Before we were married, I lived with my parents and my mother and younger brother helped with my care. My wife took over when we were married. We had no choice. There was no way we could afford a PCA and any insurance coverage for in-home nursing/personal care was extremely limited and prohibitively expensive.
So, we were stuck with each other and made the best of the situation. I worked out of the home full-time until I retired and became a full-time house-husband. I try to do absolutely as much as I can for myself and for her to put as little burden on her as possible. She gets me up in the morning and puts me to bed at night and also does the BM routine about twice a week. Most everything else I can do on my own while she is out working full-time now. I do most of the meal prep, cook, set the table, have dinner ready when she gets home, do laundry, load and empty the dishwasher, general tidying up around the house. I can sweep and mop the hard floors and vacuum occasionally, though it's getting harder with age. I keep the bills paid and do our taxes.

I don't drive since my van died, so she does the grocery shopping and running around. Our system works because it's built on love and mutual respect for each other and not putting an extra burden on each other. We do little things to lighten the others load.