The monster that is called MS.

[shanrucas]

This is the first time I posted here...I have been taking care of my mother, with very little help from family..I have one relief caregiver during the week for about 4 hours, no one on weekends. My mother does not qualify for any sort of assistance because she an income from retirement. She is in the progressive stage of MS and has been bedridden since 2001.

I am an only child, she has a sister who lives nearby, but rarely calls or comes by.. I find that I am slowly becoming bitter about this fact..as well as totally frustrated with health care..she has to pay out of pocket for many things that insurance won't pay for..such as transportation, medical supplies and other things that would make her more comfortable.

In the last year I have seen her MS progress even more, she has so many needs I wonder if I can keep up. I am trying to manage as best as I can, but I feel so alone in doing this and so confined. I have no income of my own and because I have to take care of her..I can't find a job that would accomendate. I have bipolor and PTSD and this has triggered me in many ways, some days I don't know whether I am coming or going.

I have a great deal of guilt for the times I have become frustrated and angry at the world. My mom has a wonderful, outgoing personality and its so hard to see her like this. MS is slowly taking her away from me..I know she will not die from having MS, but will die from complications assoiciated with MS. She is going to be 70 in March. She has had MS for most of her life, but never let it stop her, that is why its so hard to see her like this..logically I know this is why her sister or friends never come over or call...but I need support, this is not easy and I wouldn't wish on anyone. I had to tell a friend that wanted to come and see me that tonight wasn't a good night, mom was having a hard time getting comfortable and I wouldn't be good company..this is happening more and more. I feel so isolated.

Thanks for letting me vent here.

Shannon

[randomperson]

I know it is a lot of pressure and responsibility put on your shoulders.

My mother is in bad health as well, she can get up and around but not good.

I am also an only child with no help from anyone else.

It is tough on the one giving care as well as getting it.

Emotionally it drains everyone when there is no one to help or be there for support.

I would have a open discussion with her sister to see if she can offer some support. Even if it is just once a month it would give you a chance to get out of the house. It sounds like if things carry on you will end up disliking her anyway, so why not. Just think about what you want to say and how to say it knowing who she is first. I found for me the pressure being the sole caregiver brings makes it easy to say the wrong things.. and you want to ask for help rather than bring up the fact that she has not helped so far.

..I am dealing with the inward growing anger at life as well.. I feel like I never was given a real chance at having a life of my own. I find that hard to deal with. Maybe someone will come on and give advice on that. I could use it as well. There are some really wise and nice people in this community.

I'm sorry I know this must be very difficult for you.

[Lindamomof7]

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[shanrucas]

Thank you both for your supportive responses.

I have often thought how I would approach my Aunt about asking for a little more emotional support, but as I had discussed with others it may not be the best thing to do. She has bipolor as I do, I think it is too hard for her to even come here, but I wish she would at least call .......speak of the devil she just dropped in, said she couldn't stay long and she didn't, oh well it is what it is. The problem is she triggers me a bit....ok a lot! gonna be a long night.

Linda, just knowing that you would be willing to help is enough, you are a passionate person. As far as your fears about the future, I would have an honest coversation with your children about this, I wish mom and I would of. I just can't tell with her now what she really wants, her cognitive issues have become worse so each day for her is a new day. I would wait till you have fully absorbed your new diagnoses and what it means then have that discussion with your kids..you maybe surprised.

I know that I sounded a bit like a broken record on this is issue as I discussed before, Its just that it is my life now...the fact is if I knew then what I now I would still do this. She is happy in her home and I do my best to keep her comfortable.

Thanks for being there for me, I feel I have a little world to myself that no one else can bust in on. I don't discuss the care of my mother and what its like to my outside friends much. I don't know why, I guess its because I want them to ask me how I am,,cause anyone else asks how she is first..does that make sense, maybe sounds a bit selfish.

Thanks for the ((hugs)) Linda,,I can actually feel them! so back atcha (((hugs)))

[Guest]

My mother was diagnosed almost three months ago she felt "off" so i drove her to the ER and then she talk to her doctor and they ordered an MRI and it came back with spots on her brain. It seems everything horrible in this world always attacks the people who are the least deserving of it. I'm 16 and my mother is 34 I can only imagine what you must be going through, i don't know everything their is about MS but i mostly know that it causes paralysis which then in turn lead to the other complications. Perhaps you may consider putting her somewhere like a home or care facility and then be able to get a job and pay for her to be taken care of instead of putting the burden all on your shoulders.

Also perhaps her sister is simply avoiding and can't deal with or doesn't want to deal with her sister suffering.

I hope things get better for you no one should have to deal with that alone.

[Lindamomof7]

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[Lindamomof7]

Hi Shannon

Check out this website for care givers support fro MS :

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=576

[shanrucas]

Hi Sedsed, Im sorry that your mother got diagnosed, I can't remember who old my mother was when she got her diagnoses, I do know that she had symptoms long before that diagnoses. She continued working and managed to stay quite able bodied for many years, It didn't progress till 2001. There are many drugs to slow the progression down now that weren't around for her till now. As for putting her in a home, my aunt had found a private adult foster home, it was very nice, hard to find around here. She was there for 3 years, till I couldn't stand it anymore, she became so depressed and wouldn't eat, also suffered from bedsores, she lost a lot of weight. At home she gets one on one care and has brightened up so much, she gets to be in her home that she bought and be with her cat she loves so much. I look at it this way, would I want to live in a home? Its right for some people and it works but for us dealing with depression was just to much. My mom has never suffered from depression and to see her like that was to much. I may consider alternative care if dymentia takes completely over and she is no longer aware of her surroundings, haven't crossed that bridge.

I just don't have a lot of faith in the nursing homes we have here..the CNAs are underpaid and the nurses don't check in often enough. One facility was shut down twice in one year! I think they are working on getting shut down yet again.

I suggest that you and your mother learn all you can about MS, it affects everyone differently...I wish the best for you both.

Linda, thank you I will check out that site. You and Hotspot have been extremely helpful.

Shannon

[chatterbox512]

Hi Shannon,

I just wanted to pipe in and say that I appreciate what you are posting!! My mom also has MS, and has had it since she was 23 (she is now 54). She is doing pretty well as long as she is not under alot of stress, otherwise her balance and coordination are off and her ability to use her cogintive abilities is seriously slow. But as I said that is when she is under alot of stress. Right now the worst for her is that her eyes are affected and she can't see as well as she would like, and because of that has fallen over things that has caused other issues. I admire her so much for her strength and perserverance, she is truely my hero (she is my chosen mom, by the way not my real mother).

However, I worry about when she begins to decline as I imagine is inevitable. She does not take medication for her MS although she does take medication for ADHD and her eyes and depression which are all benifits of MS. I worry about how bad it will be, and what I will do for her.

Although your mom may not say it, I am sure she is extremely appreciative about what you are doing for her, and that fact that you are allowing her to remain at home where she is happiest and most comfortable. Have you thought respite care?? I believe there is a service that is offered to allow someone to come in and relieve you for a few extra hours and is qualified to care for a person in a delicate position. You may want to check into social services Aging services and see what they may have to offer.

I wish you the best, and remember that every day you have with your mother is special, so when she is finally taken from earth, you will look back at this and wonder how you ever thought of anything else. NOT to say that it makes it any easier now. Take a walk when you can, take up a pen-pal, or do something for someone in the community from your living room (like knitting). These will all hopefully reconnect you to the community and give you something else to look forward to.

[shanrucas]

Mel, thank you for replying and understanding what it is like to have a loved one have MS. My mom is my inspiration, she hasn't ever complained of anything and never has. Despite those times when she is in severe discomfort, she will look at me and smile. Her first neurologist who diagnosed her back in the 80's said that she would be at this stage over 25 years ago. She beat that by far. She did the right this for her, she continued working at a job she loved, stayed away from stress, she never was one to stress about stuff anyway, unlike her daughter lol. She is a very layed back earthy person. she is going to be 70 this year.

I had looked here for respite care, unfortunately the only place that I would trust with her says its $130.00 a day. I haven't researched everything yet..Everyone has been so generous in this community and has provided me with many sites to checkout. That will keep me busy this weekend.

I hope the best for your mother. My mom had the eyesite thing too, she would often see double when she was fatigued, one time she even lost site in one eye, thats when her doctor got suspicous cause her site mysterously came back. she also had the balancing problem and her left side was numb and now she has the paralysis. She has been bedridden going on ten years now, I have to use a hoyer lift to move her from bed to wheelchair..she still smiles through all this.

Best wisher to you on this journey,

Shannon

[Pakhawaj]

This is a scary conversation, my mam has had MS for most of my life but I never realised it could effect people like this. She swims several miles almost every other day and smokes cannabis daily, so I think this should offset the worse symptoms. I think I'll go see her when I next can, mams are great things even when they can't get out of bed.

So you are not alone shanrucas.

[shanrucas]

sorry Pakhawj I just now saw your post. Im sorry to hear that you mother has MS, but I want you to know that years ago when my mom was diagnosed it was in the mid '80s during those days there weren't the drugs or things that help slow the progression down like there is now. Now people who have MS actually live long and productive lives and may never get to the stage my mother is in. She has actually done pretty well considering that she continued to work even though there were no kinds of medication available. By the time these things became available it was to late for her. She had symptoms in her 20s, she is now going to be 70. Still its something to think about in the future.

Shannon

[Pakhawaj]

That is very relieving to hear, I should probably learn more about it, but it seems like a potentially frightening thing to learn about. I'm really glad there are scientists working to help with this sort of thing.

[shanrucas]

Pakhawaj, Im glad that you found my words encouraging. I also strongly urge you to learn about MS, there are so many forms and stages of the diasease. The medications that are out there can help so many from getting to the stage my mom is in now. One of the most outspoken person on MS is Montel Williams, theres a start, anyway learn and I hope your mum will be open to you about what her neorologist says. One of the things they have found with people with MS is that they are lacking in vitamin D. I have my mom on a daily does of vitamin D along with her multivitamins, she also takes a cranberry supplement to help fight off urinary tract infactions, bladder spasms is something else that can accur, and there medications for that to like vesicare.

Good luck, and if you ever what to talk to someone about this, I am always here to listen.

Shannon

[shanrucas]

It's gonna be another long night with mom..up and down getting comfortable and clean...sometimes I just want to runaway...I have been thinking about that a lot lately, running away. I would never actually do it..but to just be able to come and go at will would be so nice. Its been over six years since I could just get up go to work, go to the store when I want, go out with friends and not have to plan a week or two in advance to do so. I feel the walls closing in on me. I am so exhausted from this i can't even tell if my meds are working or not. I just want to sleep and sleep. Tomorrow will be a new day, but the same ole thing. So lonely it hurts sometimes.

[IrmaJean]

I can't even imagine how difficult this must be for you. Is there any way you could take some time to yourself? It sounds as if you really need a break. I'm sorry if I'm forgetting...do you have any family members who could take over for a few days? It's a beautiful thing that you're doing for your mother, but you need to take care of yourself too. I hope you are able to get some rest.

[Lindamomof7]

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[58corvette]

I know you Are & Continue to Do the Very Best you Know how in Handling & Dealing with So Much. We have'nt had much direct contact lately Shannon; but you know Im STILL HERE for Ya.

The Best To You ALWAYS;

Sincerely; Jim

[shanrucas]

Thanks Jim, you are so kind as always. Sorry I haven't been posting as much lately, but it seems everytime I sit down to relax for a moment and log onto the computer mom needs something:o. Also I have been taking advantage of those times that she is quiet and taking a nap.

Our Home Health nurse came by last week and made me feel good though. She said that I take such good care of my mom and is really impressed with her over all condition, especially for a person who has been bedridden for ten years. She said there is no way she would recieve this kind of care in an adult foster home or a facility. So that made me feel good. I have to say its nice to have someone say things like that, makes it all worth while.

I hope things are ok in your world, you are in a tough spot as well. We seem to live in a damn if you do, damn if don't world.

Gotta go...mom is calling me. talk to ya later.

Shannon

[Guest ASchwartz]

Shannon,

I am no expert on finances and assistance for things like ms, etc, but, isn't it possible use your mother's money to get her a lot more assistance at home? Once that runs out she will qualify for public support or for medicare or medicaid? Maybe its worth it for you to look into this?

Its just a thought.

Any ideas?

I agree with the idea of going to not for profits, church groups, etc, for help. Is there an ms support system that could help?

Allan

[shanrucas]

Thanks Allan for replying. Mom's money is being used for in homecare. My dads retirement funds have been paying for both in homecare, transportation and caregivers, use to have one full time caregiver and 2 part time caregivers. It also paid the mortgage. I was working at the time and my pay was going to the household expenses. But its, my dads retirement thats going to be running out. Moms retirement isn't much and will last for several more years, which if she has any income at all she won't be eligble for the state to take over costs of care.

I have been trying the MS Society, it's kinda a one shot deal, the grants provided can pay up to 1,000 dollars one time only. which will only help out for maybe one month. Her out of pocket for meds alone run up to 500.00 dollars a month, thats with medicare.

I have found that others who have retirement such as my mom have been running into the same problems. People who need care and have no income at all fare much better.

Its a jungling act, and I am constantly trying to problem solve this. I am going to make an appt with an attorney that specializes in this area. I had done this before but either I wasn't asking the right questions or the attorney I had seen wasn't experienced in this area. Will try someone else.

Thanks, Shannon

[Leo1954]

My mother has alzheimers on her last stage my stepfather left her with long term care insurance.

I have had to hre an attorney because i found out the nursing home i had her n was just keeping her alive was for her money they even went against her dnr that she and i had done her out of pocket expenses are $3196.00 a week plus $6000. A month for the home they had hired a 24 hr care nurse wthout my knowledge she was in a home in another part of va. I have hired an attorney that just works for the elderly to protect them from abuse & financial abuse which this place did. She wll now be back down here as of monday they have done more to her that literally makes you sick. I totally agree if she didn't have what she has she probably would have been treated better because the state would of intervined.

The sad part she worked all of her life to get what she has to be passed around like a piece of trash

nobody knows what can happen from one day to another what might happens because what if it happens to them or anyone!

I just would like you to know it's sad

[shanrucas]

I totally agree with you Leo, its a sad state of affairs when someone works hard the majority of their life and then to end up with an illness that they now need care.. I am not impressed with any of the nursing care facilities here where I live, they just want all her money she worked so hard for and the take her house that she is so proud of...I have also attained a couple of attorneys to keep her best interest at heart. I am determined to keep her in her home where she is happy and I can provide one on one care for her. I wil keep doing this to the very end. If I am no longer to keep the house cause of all the costs, so be it, I know I am doing the right thing no matter how hard it is. I will live in my truck if I have to till I find work of some type..it will be worth it cause I know I am doing the right thing....I just have to remember to keep my disorder in balance, thats why I see my pdoc once a month...which by the always seems to come with a lecture.

[Leo1954]

Hi!

Shanrucas

I was wondering how your mom is doing? How are you?

Remember when you said that the nursing facilities where you are isn't worth a ----! Here I have fought to get my mom back here when she ended up in the hospital[not nursing home] today they called to tell me that she had some pretty bad pressure points. See I think I have found one that would be alright enough to take care of her. If she wasn't in the condition she was in she would be here with me! Just think maybe I wish she didn't have the money it's hers not mine I would live in my car, tent, or where ever she would be better off with me watching her. I know you need a break like a nice weekend with somebody you could trust to be with your mom but, it sounds like me PLEASE!!!!

I just felt like talking to you about this

Take care

[shanrucas]

Im always here Leo to talk about this anytime....I can do this with my mom cause I have no children and can devote as much of my time as needed...I am sure you would love to have your mom with you...but you have your daughter too...I know for me that would just be to overwhelming. Im sorry to hear your mother has suffered beginnings of pressure sores...this is very common...at least they called you about it! Many doubt..so don't give up on the facility she is at...I can tell you it is easy for someone confined to a bed or wheelchair 24/7 to continuously battle pressure issues....We still have to watch for things and they still do happen...the trick is addressing it before it becomes an open wound....So I think it is a good thing they called, means they are watching...just make sure you ask them about it when you talk to them again and ask what they are doing for it...The facilities here I don't think would of called you at all, it would of gone from a pressure sore..to a down right bed sore...hang in there Leo...