Assisted living?

[Kkathleen]

I am 40 years old with secondary progressive multiple sclerosis. I plan to end my marriage and will need to live by myself. Is assisted living a possibility or are there other options. I am cognitively great and so is my upper body. My legs are completely out of commission....

[Sleek78]

I am so sorry to hear that. I to have secondary progressive MS. But I am still able to walk, but barely and I just turned 38. Sorry about your marriage didn't work out.

I do not know much about assisted-living. Nor how much it cost. I thought about it at one time, but I have a really good friend and she stays with me I don't know why but she helps me out as a roommate and as family send all my friends ran away or work fake or they decided to use me or lie cheat take advantage of you and my family basically are all dead except for two sisters that uncle that don't care if I live or die. I wish you the best and keep your head up high I know it sucks and it's hard but that's all we can do. I wish you the best

[jimeka in reply to Sleek78]

Nice to hear that you are still around. Has the throat infection gone and are you on your way to feeling stronger? How is California, do you like been back? God bless Ryan, Jimeka

[Sleek78 in reply to jimeka]

Hi jimeka yeah my throat feels better now thank God. It hurt bad for a while.

California is a lot better for me. Back in my home state. Yes I missed it here.

Thank you very much.

Just trying to switch my insurance now over to California and it's just going to take some time. Other then that I'm doing good. Thank you for asked no. How are you doing?

[Ashirva in reply to Sleek78]

Hey there Ryan, how's it going? How's California treating you? Enjoy the sunshine... and the coffee!!!

Anne

[elaineslife]

My husband and I live in independent living. I have great cognition and assisted living is a lot like a nursing home. People here have caregivers that come help with adls (daily living) . It is well worth to check it out.

[elaineslife]

I forgot to ask what state you live in. The nd society here can help

[Kkathleen in reply to elaineslife]

Wisconsin

[Shelly36]

Hello, if you need help, try contacting msaa.org or msf.com they can at least point you in the right direction. I'm not much help.

I'm sorry to hear about your marriage. I'm about there myself. Good luck to you

Shelly

[erash]

Check out the ILF (independent living) vs assisted living facility

Some ILF around here don't allow wheel chairs but the populations at the assisted living facility might be very similar to a nursing home patient community. Might not be very engaging for you.

They both can be pretty expensive!

[ssdw1958]

I know your not that old I have not done this yet but does your ciity or town have an old age council , meals on wheels, an Any thing like that. I think you can get rides ??? It does not hurt to try it out.

[elaineslife in reply to ssdw1958]

Yes, elder care might help

[Kkathleen in reply to ssdw1958]

I think the whole "elderly care" is pretty scary, but I do have to just get over it... Thank you for your ideas...

[ssdw1958 in reply to Kkathleen]

I agree it does sound scary but I am like you if you need help you have to ask.

[purpletustin]

Hi Kkathleen,

I'm the practical problem solver in every aspect of life, whether it's MS, life, death. I ALWAYS have to have a Plan B, Plan C, etc.

Were I in your position, I'd be doing lots of research. Contact the MS Society, state wise or national. They have advocates who can help you with planning and which route to take. Check with local organizations who can possibly help with housing, group homes, etc. Sounds like you can't/or won't be able to maintain your present housing??? They may have knowledge and options that would work for you. What about a small apartment and daily help? What about finding a roommate who would exchange services in lieu of rent??

We live in So. CA so we possibly have options you don't?? But, does your community have any type of special housing for handicapped? Are you on SSDI? Will your finances enable you to afford whatever scenario you might wish to have? Do you live in a larger area, i.e. City? Or, are you in a small - mid-size town? How about religious institutions? Sometimes they are able to pair people up with someone who can provide mutual assistance.

Keep Plans flexible. You are very young (I'm not, 71) and very attractive. Your life isn't over, just a new chapter opening up. Keep squeezing those lemons and concentrate on mental health, when depression moves in, so does unhappiness.

Wishing you everything wonderful as you explore avenues and options.

[Fee09 in reply to purpletustin]

Purpletustin, I'm also in So.cal and I would like info on the programs available to us. I was diagnosed 3 years ago and haven't been given much info on services. I am married but want some independence.

[purpletustin in reply to Fee09]

Hi Fee09, we have great resources with MS Society. If you'rein Pacific chapter, San Diego, Orange County has offices also. I'd start with calls to them. I'd also ck with Council on Aging, do Internet Search. Don't know age criteria. There's housing developments financially based that are ADA compliant. Ck out religious institutions that have housing. I know there's one in The Valley, San Fernando.

It's a question of research. Same ideas I mentioned in my original post.

Best wishes

[beadowns in reply to purpletustin]

Hi, Fee09, and others in the U.S., you can reach the National Multiple Sclerosis Society at 1-800-fight ms (344-4867). That's the national #. They will connect you to the closest NMSS and they can help with numerous areas.

[Kkathleen in reply to purpletustin]

You have given me so much to think about, thank you... Actually, you have given me a place to start and things to focus on(which I need). Most importantantly, thank you for giving me hope...

[Jesmcd2 CommunityAmbassador]

Never give up on hope Kkathleen and we are always here. Lord knows we have to fight this monster they call MS together!

[HSCT2016]

Illinois has supportive living for disabled 22 to 64 paid supplemented by Medicaid. Feel free to contact me if you need help. [e-mail]

[Fancy1959]

KATHLEEN, it's Fancy1959. Have you posted with our website / family before? If not I'd like to welcome you to the family. I am so glad you brought your concerns to us and it looks like you've got lots of feedback. Information is always our friend. And we are stronger together. So having said that I too have secondary progressive MS. My two middle sons are away at college in my husband and oldest son have been working a job in Alabama. Home is in Central kentucky so needless to say it was not possible to commute back and forth or come home even every weekend. I am sorry about your marriage. MS as such a drastic and dramatic illness that the price we pay most times is way more than could be measured on medical charts.

So I have been challenged over the past month Monday to Friday to live by myself with secondary progressive MS. And Challenge and has been sometimes but I'm nothing if not stubborn as the day is long. I am also surrounded by fantastic Neighbors and have equally fantastic friends who keep tabs on the throughout the day. I have one in particular that lives close by but I called before I get in the shower in the evening. We have a walk-in shower with a wonderful bunch and two grab bars also. I give her the approximate time I think I'll be in the shower based on if I have to wash my hair shave excetera. And I text her just as soon as I get out.

Throughout the day Kathleen I would do my darndest to conserve energy every chance I had. The tireder I get the more likely it is that I will have an accident. And since no one was home to help watch for me I had to be responsible for myself and not push myself past my limits. Well it was hard because I've always been such a go-getter bujt I did it. You have a bigger challenge because of your legs being a little to no benefit. Do you have a power chair? If not it might be something you seriously think about so you can get around your home better. You can sometimes find them at auction sites and sometimes find him on Craigslist and either way will help to reduce the cost of a chair. Do you live in a ranch? Where everything you need to access is on one floor. We just built one last year knowing that it was what I was going to have to do. If you do not live in a ranch style home git's going to be nearly impossible to live by yourself. Go through the 18 other post that were sent your way by the MSSA family here and jot down what strikes you as the most pertinent in each post or in several post. Kathleen that will give you a place to start and to organize your to-do list to start this journey toward living independently again. Please keep in touch and let us know how you fare. If you have questions you know we'll do our best to help answer for it to give you at least insight that might help you to find the answers you need. Remember we are stronger together. And I would like to invite you if I have not already to become an MS Warrior and fight against this dreaded monster with us. It seems to me you are already in a very large fight with MS as you fight to keep your Independence. Best of luck and please keep me informed. Fancy1959

[Kkathleen in reply to Fancy1959]

Thank you for your wonderful reply. It sounds like you have a fantastic support system there to help you especially when you are alone.

I do live in a ranch, however, my husband has not been responsive to changing anything so I can be safe and productive in my home. I am existing, but not truly living and the stress is doing horrible things to my emotional and physical state. Okay-no more of my life saga🙂Hence the reason why I need to think about other living arrangements. Oddly enough, being in a condo/apartment/assisted living where everything is accessible to me and I can live my life, sounds so nice.

I talked to the ms society and have gotten an abundance of information...

[Eva1981]

Contact your local DHS office and ask about community living services. If you qualify for Medicaid, you can probably find a program that provides in home care. Not sure of program names in your state but supported living,community living services, elder choices,and independent living are some of the different labels I have heard applied. Your local department of human services should be able to direct you toward the proper organizations and programs in your area.

I work for a company that does that in my state. We provide supports to individuals with disabilities so that they can remain in the community. Some individuals need only a few hours a day and others need 24/7 care.

If you don't want to be in an assisted living facility, I am sure that a program like that exists in most if not all states.

[Kkathleen in reply to Eva1981]

Thank you for the advice. My preference would be to live in an apartment or condo and get home health care.... I really hope that is a possibility because(emotionally) I am not ready to go in a assisted living home...

[Eva1981 in reply to Kkathleen]

I don't know your unique position @Kkathleen as to insurance and finances but I know that there are options in most states that would allow you to live in an apartment or house of your choosing and have support staff come to you and assist with your needs.

I went through a messy divorce several years ago. At the time, MS hadn't been mentioned as a cause of my issues but I am sure,looking back that a lot of my problems back then were MS related. Its hard when a marriage falls apart no matter the cause. I feel for you. Stay strong and do what you feel you need to for you. Call your local department of human services and ask about services in your area. Also look in a phone book or online for community living services for people with disabilities. Another source of information might be your local health department. You might even discuss it with your primary care doctor. Never hesitate to reach out for support from friends and family. Forums like this are also great. Hold your head up . It may feel like the world is ending with your marriage but it isn't. A new chapter is beginning and you get to be the author!

[Kkathleen in reply to Eva1981]

Your response to made me cry.... It was helpful and nice. Thank you...

[Eva1981 in reply to Kkathleen]

You're welcome. .....I did not wish to make you cry. Simply wanted to let you know that there are always options and there are people who care.

While I am newer to MS I felt an understanding of your story when I first read your post. I know how hard it is to dissolve a marriage and start over without anything. I had no support (emotional) system when I went through it. I had no one and nothing. I know the sorrow but take heart ;there is joy and happiness on the other side.

Not sure why I felt that I needed to respond to your post but something told me that I needed to offer what advice and support I could.

I try not to get into religion and philosophy too much online but if you're so inclined,prayer and belief do help. Let go and let God . Those words of advice helped me through some tough times.

I pray that you find the solutions and resolutions that you desire. If you need to vent or just to reach out to someone to discuss things,this forum is great. I am not online a whole lot but if you need a nonjudgmental shoulder to cry on,feel free to message me and I'll try to be here.

[Kkathleen in reply to Eva1981]

You seem like a very kind person...

[Eva1981 in reply to Kkathleen]

Thanks. I try to be. I just know what its like to be or feel alone and facing difficult situations.

[Ashirva]

Hi Kathleen!

It looks like you've already gotten a lot of good ideas and suggestions! Sorry to hear about your marriage ending. I went through the same thing in 1999 (divorce, that is).

I'm wondering if the home you're in could be tweaked so that you'd be able to function in it better? If it could, is there any chance you could stay in your home and have your soon-to-be-ex move out? It seems a shame that you should be the one who has to go through the hassle of finding a place and moving.

I don't know if assisted living is the same for a person of your age as it is for an elderly person but, when my mom checked into it a couple of years ago, she decided that it was so expensive there was no way she could do it for any length of time. She also wanted to stay completely independent as long as possible, so I came back to MA to help her out.

I hope you figure things out and find what works for you. Stay in touch and let us know what's happening!

Anne

[Kkathleen in reply to Ashirva]

I have a feeling my husband is going to expect me to leave if I am the one wanting to leave...

[Ashirva in reply to Kkathleen]

Well, that's a bummer! On the other hand, you never know... He might just decide it makes more sense for you to have a decent, manageable home to live in! (fingers crossed!)

[Kkathleen in reply to Ashirva]

🙂. I am not holding out hope, but I will cross my fingers!!!