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Wife in Hospital, kids at home - now what?


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Old 11-27-2010, 08:26 PM   #1
Mistadobalina
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Wife in Hospital, kids at home - now what?

Brief background.
me - 34 yrs old
wife - 32 yrs old (diagnosed with MS ~9 years ago)
son - 27 months old
daughter - 7 months old

Wife was admitted to the hospital Tuesday the 16th, with lack of utility of the right side of her body - arms and legs. She had ~50% control of her right leg and 10% control of her right arm. Over the last week and a half, we've done the following treatment.
Did steroids for 3 days
Did Plasmapheresis for 5 days.
Is now on her 4th day of Campath.
As of this evening, she has actually regressed - now has little utility of her leg (can't stand up), no utility of her arm, and has immense difficulty speaking/communicating (which was an attack she had in 2006, but improved after steroids). She is currently is in bed (working on some rehab) and needs help to get up and go to the bathroom.

So, long story short, things aren't getting better - they're actually getting worse. We live on the 2nd floor of a walk-up apartment in Brooklyn, with 2 kids under 28 months.

We have a nanny to help out with the kids part-time, and I was originally concerned about care for my children (ie: wife can't pick them up out of crib now with one hand, get them dressed, etc...), but now am concerned about basic care for my wife.

I'm not sure where to start, or what to do. Clearly I'm looking at moving apartments, but that only solves the stairs problem. What about care for my wife? What do I expect? Where do I begin trying to seek help? What are the resources? Does insurance help? Who do I talk to? Is there such a thing as disability services/help? I really don't know anything.

Any advice would be greatly appreciated as this isn't something we'd planned for, as with the other attacks she had improved with minimal treatment.

 
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Old 11-27-2010, 08:46 PM   #2
MSJayhawk
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Re: Wife in Hospital, kids at home - now what?

Welcome. You might contact your local MS Association or Society office. An accessible apartment would certainly help your situation.

Your wife may recover much of her mobility as MS does cycle through (I will keep your wife and y'all in my prayers). You might consider a powerchair while your wife is recovering. This can help her participate in the family while avoiding much of the fatigue. She can eliminate the powerchair as she regains her strength.
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Old 11-28-2010, 04:54 AM   #3
Snoopy61
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Re: Wife in Hospital, kids at home - now what?

Hello, Mistadobalina.

It sounds like your wife is having a very severe and ugly relapse...I am sorry.

Even though your wife is getting worse, it's possible for her MS to improve...time will tell Relapses can last weeks to months. I know, that doesn't really help you at the moment.

The best place to go for help and resources will be the medical professionals you and your wife have been dealing with (neurologist, rehab, ect.).
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Old 11-28-2010, 12:39 PM   #4
Mistadobalina
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Re: Wife in Hospital, kids at home - now what?

Thanks. She is having a severe relapse. What I'm trying to do is plan for the worst, while hoping for the best. I'd rather not start figuring out what needs to be done in 2 weeks when she gets out of the hospital, but would prefer to get a head start.

If my wife's condition doesn't get better - I can get her back home (I assume that's the right thing to do) with most foreseen issues taken care of.
If she does get better, I'll gladly have any work go for naught.

So if her condition doesn't improve and she has difficulty moving, can't walk or basically speak, what should I do?
My apartment - clearly will need to move to an elevator or 1st floor building.
My wife - Should she come home, or go to a place that will better be able to help as I will be at work? Will she need part-time/full-time care? If so, how does one go about this? Does insurance help? What does someone expect for cost? Does the hospital help?
My kids - We have a nanny (7am-2pm), and might need to get more help as the wife had been alone with the kids from 2pm until I got home from work around 7pm.

Sorry for the explicit questions - again, I'm just trying to get in front of this. I'll work with the hospital tomorrow, just b/t Thanksgiving and the weekend, there hasn't been as many resources around as I would like. And I figured people here would have some advice on the best things to do.

thanks again.

Last edited by Mistadobalina; 11-28-2010 at 12:40 PM. Reason: more info

 
Old 11-28-2010, 01:01 PM   #5
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Re: Wife in Hospital, kids at home - now what?

Mistadobalina,

I don't have answers to your questions --- I wish I did. Someone may come along with more knowledge on this topic.

That is the reason I suggested talking to the medical professionals you and your wife are dealing with. They should be able to provide many of the answers to your qestions.

As MSJayhawk mentioned, you could contact your local National Multiple Sclerosis Society and see if they could be of some help.

I do know you can get home care, what insurance will pay, if anything, I don't know. You may want to look into your insurance benefits for an answer to this question.

I have a friend who does home healthcare, she does have a client who has MS. I know her client needs alot of care and my friend provides services that go beyond basic healthcare...her choice.

I understand needing and wanting to "hope for the best but plan for the worst," you are being very realistic in what you are asking and thinking about.

I realy do wish I could be of more help.
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Old 11-28-2010, 06:56 PM   #6
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Re: Wife in Hospital, kids at home - now what?

I do not know about New York, but here in Kansas there are ADA tax credits available for any home modifications that you might need to make. If you are looking for a powerchair, your insurance should cover one. I would suggest one that has a power recline and a power elevator. This allows for more access throughout the home.

You are meeting with the medical professionals. They should be in the best position to work with you including what you might need short and long term.

For me, equipment is what I can do most to prepare for "come what may". I walk with a cane and my service dog nowadays, but in reserve I have my power chair, forearm crutches, and a walker. Making a move to another location or at least one with an elevator will make a difference. Some rehabilitation is also going to make a difference. Also, the shower and toilet should be accessible. For me, this was the greatest thing. Having a roll in- roll out shower with a built in seat and a raised toilet were like heaven on earth.

Do what you can for your wife, but do not try to be superman because then you have to worry about burnout. Give your wife the tools she needs and allow her to regain her functions. There might be some things for which she will need to delegate to you or someone else. For now, do them until she is ready to assume control.

Lastly, for now, when your wife does come home, get her to this web site so that she can have someplace to go for advice and to vent. You can get back to a "new normal" as long as there is understanding and patience.

Be strong for your wife and your kids.
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MS onset circa 1977
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Eternally blessed and eternally optimistic!<><

 
Old 11-30-2010, 06:18 PM   #7
Wilc516
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Re: Wife in Hospital, kids at home - now what?

Unfortunately I do not have much in terms of answers to your questions but wanted to voice my sympathies for your situation.

As others have said, there is simply no way to tell what the future will hold and how long the relapse will last. Did anything specifically set it off that you can pinpoint?

Aside from the medical professionals, the first place I would go is to your Human Resources rep (or whomever carries the health insurance's HR department). They usually know what benefits are available to you such as intermittent FMLA which would let you take time off of work to assist on an as-needed basis (say leave work at 2:00 to relieve the nanny which would ensure your kids and wife have support). The HR person will usually help make calls to the carriers, especially in situations such as yours when your mind is focused on getting your wife better. Do you have any short term disability benefits through your employer? HR can also tell you if there is any benefit to a spouse or making changes to a house, living situation, etc.

I give you kudos for reaching out to the MS community and taking initiative to help your wife in every possible way. Clearly she has a strong support system, found herself a great husband and that may just help her condition to improve, even if "only" the mental stability that everything will be okay. And it will, it just will be a matter of finding what her needs are and what your options will be.

Keep us posted and know that my thoughts are with your family <3

 
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