Forum family question--How to handle not being able to do it all on your own?

[Jacksmom516]

The question posed to me the other day was  - what are you going to do if your MS gets worse?  My first response was I won't let it - but after much thought I realize I unfortunately do not have control over what it is going to do.

From reading posts here most people either have husbands, wives, kids, significant others, someone who helps.  I do not and the realization that I am only 50 and could be here a long time (hopefully) and if I do get to the point where I cannot do it all on my own - what would I do.  So  I started looking and I am at a loss.  Most of the assisted living facilities are for people in their 70's and 80's not someone my age.  

So therein lies my dilemma - what would I do if I cannot be on my own and maintain my house.  I have declined in mobility from where I was as little as 5 years ago.  And if it continues at this pace -  where would I go.

So I ask my forum family for some advice -

Tracy

[Corriel]

Hi Tracy, like you, I am on my own.  I am not sure if there are home health care options available where you are, and to be honest, I am not sure what I have for options myself.

It is a question that has started nagging at me lately though, because of cognitive and fatigue issues starting to interfere with my work.  Now I'm fast tracking down the worst-case scenario type stuff.

I know that there will be folks to chime in and offer better advice, but I just wanted you to know that you aren't alone.

Corrie

[Jacksmom516]

Thanks for the support.  It is hard enough dealing with a disease like this but doing it on your own is even tougher!  I work 7 days a week right now to make ends meet -  been doing that since 2010. It is hard but what needs to be done to pay bills and medical expenses.  It is daunting to think of not being able to take care of myself but a reality I guess we have to face!

Thanks again so much!

Tracy

[missyrn0514]

I am one of those who do have a support system but have always been the caregiver.  The thought of relying on others has been weighing heavily on my mind lately. I do know as a health care provider there are options for home health assisted living and such but none of that comes without a price. I know I. The very near future I will have to decrease my hours this scare s me with help. My heart goes out to you.
Missy

[missyrn0514]

You know I just thought of something else.... confide this to your PCP as well. There really is a huge kick for keeping people out of longterm care facilities and indepedent. ...maybe there is more support.  I know there are home health aides that come in to do the housework help with th e bathing and people bring in the meals. I am not sure where u live but here we also arrange transport for to and from MD visit s snd grocery shopping snd such. Yhere are opptions. Hang in there

Missy

[karryon55]

Hi Tracy, I'm know here in Australia you can get about 6 hours support through the government which I have had to use at times when my RA was really bad. I am also alone, live alone & unfortunately don't even have friends to ask for help as my disabilities I already have in life have isolated me.

I have only just got a diagnosis & I haven't had anyone to talk to or cry on their shoulder so this is very raw for me currently. I have heard of people who are in there 30's 40's etc living in age care facilities because there is nowhere else for people to go if you require a lot of care. I hope I can retain what I have with my mobility etc. because I have already been on government assistance for over a decade. I guess for me I would not like to even consider what would happen if I got to a stage where I required a lot of care. It makes me shudder at the thought.

It's a very good question for those of us who are on our own. A scarey one for people on their own to think about as well. Karry.

[PastorDan]

My wife's expressed concern about this topic, too, fearing I might not be able to keep myself moving in years ahead.  I am quite a bit bigger than her, and she has RA, so she would certainly be unable to lift me, and probably not able to provide much assistance toward my mobility except for motivation.

I recall visiting a relative at an out-of-state hospice facility many (20 to 25?) years ago.  Chatting with the facility's chaplain, he pointed out a resident in their late teens or early 20s.  The person had been born with only a brainstem, nothing more in terms of a developed brain (I believe that this is called anencephaly), and wasn't expected to survive birth, much less infancy.  The individual had no family surviving when I was there, the chaplain told me, but stayed alive at the hospice center, partly through the work and support of volunteers.

I think it actually helps me to keep this in mind.  Not that I expect there will be volunteers to care for me, but that I realize that there are conditions more dependent than any in which I expect to find myself.  I could think of others, but this is almost certainly the worst.

Do any of the MS organizations provide assistance to persons whose disease progresses to a point at which they need regular help?  Some of you fine folks more connected than I might be able to answer this; I just raise the question.

Tracy, I will pray that you find the answers you seek.  I appreciate you raising the question; it should help me keep the future in mind.

[Jacksmom516]

Thanks to all for your words of wisdom -  I have contacted my local MS chapter for some insight and also will speak with my Dr.  

I try to stay positive as I know that this helps with everything but thinking of myself 5-10-15 years from now and should I not be mobile is a daunting and scary thing.  This as everything is in God's hands.

Thanks again
Tracy

[karryon55]

I thought long & hard about your question yesterday. I have decided that all a person can do is to pray that you remain independent but also be proactive & to have at least looked into what your options are if this occurred.

I also believe in working with the local MS chapter to ensure I am doing the best things I can for myself both now & in the future. Thanks, Karry.

[Sailorsong]

I have been thinking about this since you posted your question. Like you have have no friends or family near me. So this topic is near and dear to me and frankly I don't know what I'll do either if I can no longer take care of myself.

I don't have any ideas myself, but thought you might like to know you are not alone in this area.

Dennis\

[SarahL2491]

With DH more elderly than me, am sure I will hope for in home care, but other than that, am sure child will have me put somewhere.'

Like Dennis, I often think about this, especially when I am in a relapse.

Dennis, you know there is the Maine Veteran's Home right on the same grounds as the VA Clinic.....where we went.  Might be nice to go visit there someday just to acquaint yourself with people and visit the lonely ones....