Severe progressive MS -- need help please

[Razgo]

Hi Maynard, i understand what you are going through. do some searches on my posts.

I have been feeding my wife via tube for 8 years now. my wife hasn't moved or spoken or eaten orally since around 1997. she lost her ability to eat anything more than a bit of yogurt each day around 1999.

Being my wife I am able to have been there for all her care 24/7.

Being your mother hospice care will probably work well for her. But a feeding tube or “PEG” is what will happen if she loses her ability to eat orally. You are then fed via liquid foods which normally the public hospital can arrange for from their dieticians.

I don’t know where you live or what community support there is so I can’t help you there but I am sure you could find out via your local hospital what community care to call and go from there to get all the help you will be needing.

I doubt Dr wahls diet will help as i have yet to find anything that will help my wife.


russ

[fourtimer]

Maynard, I haven't visited this site for months and I'm glad yours was the first post I read. I think I can offer hope to your Mom. I have had no use of my arms nor legs for years and I live a good life, not great, but who does?

I am using a device called a "Sip 'n puff'' at this very minute along with my "on screen keyboard" to type this.
Most computers have an on screen keyboard in the 'accessories', the 'sip 'n puff costs about $150.00, but there are M.S. groups on the internet that can help you get one. The phone company directed me to an organization that helped me get a phone for folks like us who can no longer dial. There's more, but I'm tired and will check back in tommorow or !ednesday. Keep the faith!

[suzq]

Hi Maynard, I'm new to this site, but your post caught my attention. I was diagnosed in 1992 and I am now 53. I went from relapsing remitting MS to secondary progressive in a little over a year. I am now pretty much where you say your mother is. I have just recently lost use of my hands, and even though I've been in a wheelchair for 20 years this has been the most devastating event. I, like your mom, cannot pick up a drink of water or dial the phone or use a TV remote. I feel so much for her because I know how frustrating and scary being at this point is and I have such respect for you for being a caregiver. My husband has been alongside me through everything and I know how tired and stressed he can get. A caregiver role is more difficult than any job you could ever have and for your age, being able to do it makes you an amazing person.

When I got to the point that I can no longer use the computer, I got very depressed and decided I had to find a way because the computer was my way to socialize. I ordered the Dragon speech recognition program for my computer and it works phenomenally. I have tried other speech recognition programs and they didn't work, this program recognizes your voice so well that even when you slur it is able to read it. I can do anything hands-free with this program.

Anyway, I thought maybe that would help. It helps me to stop obsessing about how bad my situation is, to being extremely happy with everything I can do on the computer now.

You are an amazing person and my thoughts and prayers are with you and your mother. Feel free to contact me if you have any questions.

Take care

[kellygrn]

Here is a site that has all sorts of ways to stay connected to the world. I have remotes on my speech machine that will turn tv on/off or change channels. Stereo & radio can also be added.

My lights are on another system that hangs on my bed because I haven't set it up on the other system. My son has his ac on his cell phone. Turns it up an hour before he gets home. This is a good time to be handicapped. LOL!

Have you seen Steven Hawking's glasses? that is how he controls his world. A tiny laser light on his glasses.

http://www.smarthome.com/_/index.aspx

KK

[NYJenn]

Hi,

You said that your mom has no benefits at all? I think talking with an MS Social Worker could be very helpful. They know just about all the available help for people in you and your Mom's situation.

For example, I think Medicaid can pay for an aide. If your dad's income is too high to qualify, there are exceptions made for some cases and other ways to get around the rule.

Good luck and keep reaching out for help!!

[MaynardMM]

Thank you all for the nice words. I am definitely looking into the different voice activated software that a few of you mentioned, which is encouraging.

NYJenn, I will get in touch with someone and see if any aid would be possible. But I have a sinking feeling that they'll say nothing can be done while she still has a house. But because the mortgage is upside down, my dad will lose 15 years of mortgage payments if he gives it to the bank. Maybe they'd take that into consideration, since the house is disabled accessible and she has such specific needs, including the need to have the temperature around 58-60 degrees year round, that it would be really tough to have her live anywhere else.

[fourtimer]

Since your Mom and I are in the same condition, I am curious to know what state you live in? Maybe I could help you locate resources.

[suziq38]

Possibly your mother can go to a long term care facility and your dad can keep their house.
You can visit her each day, on alternating days.
I know her care will not be as good as if you two cared for her, but sometimes this is understandable when the disability is so profound.

I cared for my FIL for 12 years. I have back problems and need a surgery to prove it.

Thank goodness we could afford a little nursing aid care, but it was expensive.

Once our money ran out, we placed my FIL in a facility near our home.

We visited him everyday, on alternating days. Our teenage kids visited him on the weekends.

He received good care, and we brought him home sometimes.

I wish you well, but I ask you to live your life in the best way that you know how. Your mother is living her life; sometimes life is not fair. You are healthy. You need to live your own life, and it is tough caring for a loved one as her nurse everyday.

Living your own life and making a success of it does not mean that you are turning your back on your mother.

Think about it.
God Bless.

[MaynardMM]

Hi Fourtimer, sorry this took so long but we're in Virginia.

Update: As expected, my mom was denied benefits even after we applied for the exception, again because her husband's income is deemed to high, even though he's pouring it all into the mortgage payment and her expensive medical needs. I really hate our healthcare system and I feel more helpless and trapped than ever. I know I shouldn't be complaining here when I don't have MS and most of you do, so I thank everyone for being kind anyway.

[Fed Up]

Maynard, this may not apply to or help you, but this is what I did with my aging mother, that owned her own home (without a mortgage) and had serious illness/disease;

A county social worker came to her home (this was 12 years ago) and told me to get a 'trust.' Which, your parents can do as well.

Now, I am not a lawyer and I don't trust too many of them. But, they were able to write one up and put the home and any assets, in the trust. Then the trust OWNS the assests, not your parents. Even though they control it.

As it was explained to me, by 3 lawyers. My mothers income was so minute, that she did not have to place her checking account in it.

Please see a lawyer and a social worker. Some people do trusts for around $500. and others $1500. or more, depending on the resources in your area.

One of the lawyers told me, that the trust has to be in place for around 6 months, before social services will step in and get your Mom, the help she desperately needs. They even came out and put in ramps and did a bunch of house repairs. As, she was low income and needed the help.

I am certain, the rules vary from state to state. Your Dad needs to get a handle on this. So, he can take care of both you and your Mom, without going broke.

Sure hope this is helpful for you? fed