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New to the Forum, Trying to help my Mother

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Rheumatoid Arthritis
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Posted 10/30/2013 3:37 AM (GMT 0)
Hi everyone,

I am new to the board and very happy to see an active board that helps give answers. So I just want to say thanks in advance for all the help I get.

So I am on here to try and get some answers and help for my mother. She is 59 and over the past year to year and a half her health has really deteriorated. It has really taken a toll on her and on the family emotionally. It started with the typical knee pain (She got the shots for), then hands, feet, and now she can no longer walk straight and her feet kill her everyday.

I feel terrible as a son to see her this way after all she has done for us. She is STILL working, and due to my fathers health she continues to do so under these circumstances just to stay afloat financially. It is devastating to me...and anytime I can help I do (As far as taking her out and helping carry things etc.) I try financially but she is very proud.

In any case, more importantly I want to get her the proper help and care. I do not even know where to begin. The decline has moved so fast and I am so sad for her. Her toes are so disfigured that I find it amazing she has the will to work everyday, go home, cook, clean and care for my sick father.

I guess at this point I just want to know if there is anything I can get her for this. Her Primary finally got her an appointment with an RA specialist but even that is recent and not even gone yet.

What can I expect from this and can it be helped? Can she life a somewhat normal painfree life or is it all downhill from here?

Thank you so much for any advice
Posted 10/30/2013 3:52 AM (GMT 0)
Hi Well the Most important thing your Mother has is YOU it is Good you are there for her.

Not knowing your Country im not sure the services available But that is something you could look into

contact your Arthritis Association for leads

Once she goes to the Rheumatologist you will all have a clearer view, is it possible for you to go with her?

have her write a List of Symptoms and daily issues to take with her

she may be eligible for Disability Support or Home Help

But even if things continue as they are for a while if you keep close contact and assist where you can it will be a Great help to her.

and Remember we are all here for You as Well cos it Will take a Toll on you too Don't be reluctant to seek help or simply have a whinge its ok

Posted 10/30/2013 4:20 AM (GMT 0)
Thank you for the quick response. We live in the Midwest of the United States, and I plan on helping in any way I can. I am the one that takes her to run errands etc. So I will have involvement in what they tell her.

I truly hope there is help for her or at least stop the progression. 59 she still has a lot of energy and will to live a normal life.

I don't think the disability or home help is something she is even contemplating at the moment. She isn't in denial, but I think she wants to live normally still. She refuses to give up.

Are there any immediate products I can purchase that may help her feel better? (Shoes, socks, etc)
Posted 10/30/2013 8:45 AM (GMT 0)
I guess I know how she feels I kept working as long as I could I was nursing and i'd do 1 shift have 2 days off then do another till one day I collapsed in front of a patient my knee had Locked up, then I went on sickness benefit & used my savings till I went on Disability.

I suppose any items to help her will depend on how effected she is and which areas,

I know one item that helped me Greatly is a simple Knife it is for chopping or slicing and has a stand up handle so you grab it in a fist , also a Tap Turner which helps turning taps there are 100's of these items some expensive some cheap try not to get ripped off as quite often something you find at a specialty store you can find simular at like a  Wal-Mart or cheap store and some you can make at home with a bit of foam

 the Best professional to contact would be an occupational therapist or again the Arthritis Association  as I'm in Australia all our processes are different but you would be able to find simular

a few hints I got in the early days was to use a piece of plastic or wood & tape it to your hair brush handle this extends the reach so you can brush hair without hurting shoulders

also over here you can get Socks that have padded bottoms they help with sore feet

and that Non Slip rubber matting is good so when you open cans or jars etc. they don't slip across the table

there Really is Something for Virtually every Body Part  

it is just a case of looking around

Most things that help are either Cushioned or Oversized so you don't have to grip so tightly

Posted 10/30/2013 5:42 PM (GMT 0)
I have no clue at what stage she is in, but the areas affected are her knees and below. also her fingers and toes are starting to go crooked. Upper body and back as of now is fine just the areas mentioned.

I was sad to read how you eventually had to go on disability when the incident with the fall was the final straw. I often fear that would happen to my mother at work. She has been at the same company for 37 years. I'd had for her to end it on those terms, unfortunately financially disability benefits won't be enough to make ends meet.

As for the items, luckily she isn't at the point where she can't function without them but just the other day we finally had to buy her some shoes that can stretch due to the disfiguration of her big toes protruding form the side.

I want to get her on medication soon, but being young at 59, I fear those drugs do so much damage to the liver that it will affect her by her 60's

Posted 10/31/2013 1:00 AM (GMT 0)
I was thinking about this last night and it popped into my head Compression Gloves that is one thing I sware by

you can probably ask at a pharmacy they are normalish looking gloves but they really help she could wear them after work to relax or in bed I wore mine 24/7 for a while

Sounds like she Really Needs to get on some Medication Soon the earlier treatment the better results

I ignored mine for a while then as I had problems with a lot of the medications put my head in the sand and refused treatment for a year or 2 but it did not do me any good to do that

then I found a Good rheumatologist and got treatment on track

Don't be surprised if she has to change Rheumatologist's or they try different drugs its all about finding what's right for her

I went to one Rheumy I wanted to punch out so Never went back to him again She Needs to be able to Talk freely and feel comfortable

Posted 10/31/2013 2:53 PM (GMT 0)
Seconding the compression gloves. They really help when I'm in pain and they help keep hands warmer which also helps my arthritis. I got mine from drugstore.com. Keeping my feet warm is important too. I have a heated foot pad under my desk at work and now that the weather has been getting chilly, I bought some wool/silk socks at Costco. They breathe, but keep my feet toasty especially at night.

Can you get some household help for her? Having someone in once a week to vacuum, dust, etc. would probably be nice. I cut my work week back to 32 hours/week; I'm lucky I can do that and I know not everyone can. Another thing I've cut out is running around town trying to find odd items. I bought a Prime membership on Amazon and order stuff there. (Things like glucosamine for the dog or other oddball items.) With RA we have to make resting/relaxing time a priority.

If you could go the rheumatologist with her, it would also help you to see if she's being taken care of properly. There's a lot of information about what to expect from your rheumy over on rawarrior.com. As BadDay said, she'll probably have to try different meds to see what helps. The rheumy should be doing blood work to keep an eye on her kidney and liver functions.

BTW, you are an awesome son! She's lucky to have your help.

eta: here's the rawarrior link: http://rawarrior.com/meeting-the-new-rheumatoid-arthritis-specialist/

eta2: This site helps me a lot because everyone knows what I'm going through; they've lived it themselves. Sometimes I feel like my mom and my friends are tired of me whining so I come here. If you listen to your mom and make her understand that you're not judging, you will help more than you can know.

Post Edited (Carole_D) : 10/31/2013 9:20:53 AM (GMT-6)

Posted 10/31/2013 5:59 PM (GMT 0)
Hi, I too would suggest trying to go see the Rheumatologist with her if she is comfortable with that. It helps to have someone there to ask all the questions that come to mind and also remember the answers that the Doctor has regarding them. I write mine down because often it is hard to remember them and trips to the Doctor can be a stretch of time between visits.

RA is not a one size fits all disease and the symptoms and progress of the disease can really vary from person to person therefor it is really hard for anyone to be able to tell you what to expect regarding your mom's illness.

I would caution that if her RA is bad enough that she could benefit from making sure that financially she is able to get by on disability should she have to take it. I work and have the entire time I have had RA and at times I have had serious concerns regarding this as the the disease has progressed. Some flares are bad enough for me at least that I have been off work for a few weeks at a time due to it but fortunately I have not needed to take disability. I have been bad enough before that my Doctor has offered to help me with the process but I declined. I am stubborn I suppose.

It is good of you to look after your mom the way that you are. She will likely need all the support she can get while the Doctor starts a treatment plan and tries to get things under control. This is invaluable for her that you love and support her any way you can. Even if she doesn't need your help it is a big relief to know that should she need to she can reach out and that you will be there.

I wish you the best and I hope your mom feels better soon and gets a great doctor. -Don
Posted Today 6:36 AM (GMT 0)
Thank you all for the insight. Sorry I haven't been on lately as so much has been going on in my life. But it looks like I will finally be able to take a breather and do more research.

In regards to my mom, things continue the same but now her once "good knee" is feeling bad as well. I get so scared that one of these days her knee will lock up at work and she could get hurt. She still has not gone to the RA specialist which upsets me, but I went ahead and made the appointment for her.

I truly pray that she can get some help and relief. I am so uneducated about RA that I don't even really understand the options. I have read there is medication but is this simply a pain killer? Or is this to stop progression?

What can I expect from the RA visit? Will the medication also help with pain? I feel a little angry with her primary as it took him so long to realize she needed to go this route. During her initial decline he gave her the cartilage knee shots, and after months of that becoming non effective is when he decided to send her.

I know it's an inevitable disease but I wish she had help sooner.

One final question...she is in general very tired and in my opinion needs a massage! However, given the condition is this safe? Beneficial? Any type of massage that is recommended? I really want to take her as she needs it. But want to make sure it doesn't hurt in the process.

Thank You all again and I hope everyone had a great Thanksgiving
Posted Today 6:39 AM (GMT 0)
Hi have you asked if she can go on a cancelation list so if someone cancels their Rheumatologist visit she can get that spot?
the medications are many, most nowadays do Slow the progression of the disease and so also help with pain
it will depend on the Rheumy which ones he starts her on But most possibly Methotrexate and something like Humira(TNF Blocker) or prednisone (Steroid)

MASSAGE YES I LOVE GETTING THEM When I can Afford it - BUT you MUST Choose Wisely go to a Reputable Person Not a Harsh massage it must be Gentle And TELL the masseur she has issues But Yes They Help
Posted 12/2/2013 10:52 PM (GMT 0)
Will she ever get better with the meds? I also read that surgery is an option when joints get too disfigured. She certainly looks like her legs are headed that way. She now only walks with a limp. By the end of the day she no longer can walk up and down stairs and has to lay down.

She is very resilient but I have no idea how much longer she can last this way. I feel like she should be retired but she is basically supporting my father and sister since my father is also having health issues and forced to retire.

It truly breaks my heart yet gives me so admiration for her as to how she can be so strong. Here is a woman that is wobbling to work every morning at 6 AM gets home at 4:30 PM, cooks, cleans, irons, prepares lunch and takes care of my sick father.

I don't know what the family would do with out her. Having said all of that, can she realistically continue this for years to come, or does it progress quickly at this point?

I have made her an appointment today.
Posted 12/3/2013 2:55 AM (GMT 0)
Well she can get better, however the damage that is done is there and cannot now be reversed, I wish it could because I'd give you my magic wand. You are so very good for helping her and making sure she has a RA Doctor's appointment, a big congrats to you. She needs to hear it from the doctor now that she's not wonder woman. Go and look at knee braces for her bad knee as a brace will help. I use a brace on my bad days. You also need to look into getting meals on wheels for your father and sister, so your mom doesn't have to work all day long. please look into getting help for her and your family maybe it's time for assisted care living for your family...Sit down and talk to your mother after her doctor's appointment. RA is progressive and it can get aggressive if untreated and she already has damage done. If the doctor gives her the diagnosis of RA then she might be able to get disability from the government and maybe it would be enough for an assisted care place...not a nursing home, no way, but with assisted care she would be able to take bus rides to places and still prepare one meal. She does need help.
Many prayers and well wishes to you and your family...
Posted 12/3/2013 6:45 AM (GMT 0)
Hi RAson I fully agree with what Chartreux said
and coming from a person that didn't only think she was superwoman she Knew it - I could do anything I Looked After other people and I was Tough as Nails , you have to come to the awareness that You are Not
and im sure part of your mother is thinking that now but the other part knows as she is the main support she feels she can just "work thru it"
she Needs to get to that Rheumatologist appointment and Not Cover up anything , none of this "I'm ok or it's not really a problem" she must tell how it is
Posted 12/3/2013 12:03 PM (GMT 0)
Aloha!
I am a newby also which is what attracted me to this thread..

I too love to see the interactiveness!

My question to RA Fantastic Son would be, what is her diet like?
Thank you!
Posted 12/4/2013 1:44 AM (GMT 0)
I know I understand that she needs to come to terms with this whole thing. And I myself don't want to turn the other way and pretend it isn't happening. I want her to get in for her appointment and help fast.

I just hope this isn't a quick change in lifestyle that will lead to her downfall and depression. Even though she is no longer 100%, If she can stay as is I think she would be happy. That is why getting on treatment asap is crucial.
Posted 6/18/2014 5:49 PM (GMT 0)
Hi everyone,

Havent posted in a while, mainly due to other family illnesses (when it rains it pours) but I wanted to follow up and ask a few questions.

So as typical my mom is still working everyday and by the time she gets home she has to rest as her knee pain is so intense. Also her fingers hurt her. She is still very active and wants to do more than she can. But I am scared one of these days her knees will just give up.

She went to the doctor recently and gave her information on plaquenil as an option of a drug to start taking. But of course they warned of the dangers including problems with the vision. She is thinking about it and at this point we are not sure if it's the way to go. I would say so, since all we can do is try anything that might help.

Of those who are on it, what are the results like? I know its a slow acting drug with months before it shows benefits.
Posted 6/18/2014 7:34 PM (GMT 0)
I haven't tried plaquenil, but I've read of others here who have and I'm sure they'll jump in when they get a chance. I do remember reading advice to get an eye exam before you start it and let the doctor know that you're going to be taking it so he/she can watch for side effects.

Most of the RA meds take a long time to start acting. Every time I've tried something new, the rheumy says it can take up to three months for it to start working. It's a pain (literally!), but that's the nature of RA.

I'm glad you're still trying to help your mom. She's lucky to have you.
Posted 6/19/2014 6:56 PM (GMT 0)
Thanks Carole,

My mom decided to give it a try. Anything to help stop the progression and maybe help with the pain. It's so sad to see her struggle. She still does everything on her own but gets tired easily and walks with a bad limp.

She made a comment of how I am probably and rightfully ashamed of having a "crooked mom" It was crazy! Of course I told her I would never feel that. In fact I am proud she is my mom. Love her to death and honestly my best friend. But the point is it's sad to see the self conscience factor this brings.

I hope something helps, because I can not see how she can continue at this pace much longer. It all seemed to have unfolded in the past 2-3 years. Very fast.
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