ONE STEP OUT OF A NURSING HOME

[onthesamepage]

I’m pretty much one step out of a nursing home should my caregiver situation evolve negatively. Right now I’m married but it’s not stable and it is not even fair to my wife how much I am forced to depend on her. It is unsustainable. If things change I won’t be able to afford the kind of care I need privately.

Anybody have suggestions or know of a source/meeting place/forum specifically where the severely disabled can find others with the same issues looking to share living expenses and caregiver costs?

Thank you for any good ideas!

[jazzgirl]

Where do you live, OTSP (city, state)? I'll surf around for you to see what I can find. Here in Philadelphia, PA it's an organization known as JEVS.

I'm sorry it's gotten to that point for you. I'm pretty close to that point myself, although I'm trying hard to pretend that it isn't so. I'm 54 and have had MS since I was 22. I didn't have true problems with the disease until I hit my mid-40's.

[onthesamepage]

Thanks for responding; I'm close to Philly in NJ. I'm 57. I have to face the fact I must be prepared for the changes that may come. Honestly I've got MD not MS but we're all in these life struggles together right? Thanks again.

[Redwings]

Hi OTSP:
Check with your state's Area Agency on Aging (you can find them online). They also serve people with disabilities and might have some leads for you.

Onthesamepage, if you're comfortable sharing your email, I have a friend who works for the foster care system just north of philly. She may be able to pinpoint help for you.

[lynnepynne]

hi onthesamepage! Can you tell me what MD is? (sorry if this is a silly question)
I hope you find the support you are looking for.

[kif8skip]

MD

hi onthesamepage! Can you tell me what MD is? (sorry if this is a silly question)
I hope you find the support you are looking for.

MD = muscular dystrophy me thinks !!

I hope the OP finds some help and answers for a good living condition -

[lynnepynne]

MD = muscular dystrophy me thinks !!

oh, ok, thanks!

[gomer]

I was TESTED for MD years ago, even before the MS can-o-worms was formally opened.

YES MD = Muscular Dystrophy.

Gomer

[NYJenn]

Outlier!

I think we are all in the same boat, MD, or MS. I am recently separated and am living alone. I also worry about the future and where I'll end up.

I agree with the poster who said to go to the state's Dept of Aging--not because your old- -because it also collects information on housing options for the disabled.

Also, since you are in NJ, put yourself on the waiting list for the new housing development specifically for people with MS in Freehold (Google it).I did.

[jazzgirl]

This site has a plethora of information for people in your situation, OTSP. Please keep us posted as to how you're doing!

http://www.state.nj.us/health/senior/index.shtml

[Nay91400]

Jazzgirl, since you live in Philly, think you could promote my MS Bowling Fundraiser? Its listed in events already, but the more the merrier. =)

[DianeD]

Realistic I guess

Hard to believe how many people are 'alone' with this dx. To those who are married and feeling deserted, it must be awful, but it gives you a glimpse of your partner that you might have found out about much later.

When we get married we take vows that usually say' in sickness and in health, till death us do part' (or words to that effect). In todays crazy world this appears to have no impact or very little since the divorce rate is so high.

I often think 'would I be as patient and helpful' if it were my husband who had MS and not me???? That thought makes me feel humble and I try hard to be more understanding.

Illness is an awful thing, regardless of what it is. It separates us and makes us more 'aware' of ourselves, but it is also humiliating and causes us some insecurity.

In the best of cases we learn we have more 'gumption' ( a word my mother liked) and we can do somethings to help ourselves.

Don't give in to a nursing home sentence if there is anything you can do. Doesn't it seem as though there would be (or should be) a way to hook up with others who have a condition like MS... Surely there are agencies or people, (even here) who can offer some help.

Sorry to hear you are not getting support from your family.

I'd slip information about MS into their mailbox, lunchbox or whatever. If they refuse to understand or even try to understand ..I'd pity them as they will have to prove to be disease free and perfect to get through the rest of their life (highly unlikely).

Some people are not compassionate. Here on MS World you will find many who are.

Best to You....Diane

[AshNight]

Jazzgirl it says in ur sig u used LDN, how did that go for you?

[jazzgirl]

Jazzgirl, since you live in Philly, think you could promote my MS Bowling Fundraiser? Its listed in events already, but the more the merrier. =)

Give the Greater Delaware Valley Chapter a call, 215-271-1500. Tell Karen (the receptionist) what you're planning and she'll direct you to the appropriate person (she knows me well. My name is Janet) Good luck, and have fun! (I always sucked at bowling, but my friends and I always had a good time WHEN we'd go because we ALL sucked! ).