Hi everyone. My name is Sandy and I am a carepartner to my husband Jim. Jim has multiple sclerosis and is considered secondary progressive. He's had ms for 19+ years. Jim is in a wheelchair and cannot do some daily things for himself. We've been married almost 23 years and have two sons in college.

Jim went through kidney failure about five years ago and I retired to take care of him full time. I actually love having this opportunity and sometimes think this was really my calling. I was teaching art and design in college and while I loved my job, nothing is as priceless as having the opportunity to take care of my husband. God trusted me to do this and I hope to do well. That's us in my avatar.

I am not going to lie and say it's easy. No way. It's a very hard job and one that can sometimes make us feel alone and scared. But, we all know we have to be the strong one right?

Sometimes when I feel alone and isolated I come on a board such as this one and I realize I am not alone and there are some who are worse off and have more difficulties than I can ever imagine. I have learned to appreciate what I have and take my position seriously.

My husband and I work as a team. If we didn't I honestly do not know how things would be. I learned it's OK to let him know I am scared and in return we work together to figure things out. We also took care of future issues and talk about things that people who aren't sick don't. We don't live in the future but we know it's something we have to think about. We try to live each day as if its our last.

Ok, I will stop rambling. Just wanted to introduce myself and say hello!

Hugs,
Sandy

Oh Sandy...its so nice to be here...feels safe...

How is Jim's bladder doing...How are you doing???

Hi Sandy,

You sound like a wonderful person. You have the right attitude to enjoy the time you are spending with your husband - it is a gift in its own way. My 12 year old son was home ill, and I thought the one good part was the time we got to spend together.

I wish you and your husband the best - I'm here if you ever need to speak.

terry

I admit I was wondering how Jim was doing also. I'm glad you posted here.

Those of us who know you from 'Another World' know how devoted you are and how knowledgeable you are.

Thanks for posting here so we can catch up with you and Jim.

Tootsie

Sandy,

You and Jim are blessed to have each other!!! You two are always in my prayers and I love to read your posts

Thank you everyone. Jim is doing as well as can be expected. The unknown regarding the possible bladder removal is worse than a UTI emotionally. We are definitely not going to do it if there is something else that would help. We have wondered if adding a super pubic cath at the lower end of his bladder would help? We have to wait and ask the urologist.

For those who don't know us, Jim has a urostomy. They created it by placing a piece of bowel to the top of his bladder that directs the urine out the stomach. He needed this to protect his kidneys from reflux. He has a very spastic bladder from his ms and it was shooting the urine into his kidneys. Add a UTI and you get the picture.

I hope this forum becomes very busy with us caregivers. While I do appreciate the other forums and the friends I have made, it's nice to speak with those who really know what we go through as caregivers. I am sure the same is for those who are sick. And then there are some of us who are sick as well and caring for a loved one. My biggest fear is becoming sick while caring for Jim.

Hugs to everyone, let's stick together and support each other.

Hopefully a lot of carepartners check in here.....I can tell u guys all this!


Sandy is my bestest bestest bud and her and Jim are two of the most amazingly fantastical people!!! I can't wait for u all to get to know them!!!

Stop making me blush girl!

Sandy.. I just read your posts. Very touching. I've not been online due to computer problems and did lose prior reply... trying again.....

I too hope more carers will post & share here...
I 've been more active at other Forums for my medical problems. I"m one of those "sick" people caring for Loved One and continually deal w/ challenges of how to maintain

I've been primary livein carer for both parents for 6 yrs.
my mother died last year.
my father has several disabling medical conditions; was bedridden for years but now can go in motorized wheelchair, after assistance to transfer.
He needs help w/ most activities of daily living but is aware, alert & a sweetheart. doesn't complain, feels like he's a "burden" because of his needs.
we've gotten some help but may need more. to keep him living in his home..
more details later... he's 86...

few years ago my father had a suprapubic catheter; in concept at that time it sounded great (he had Foley catheter and got UTI's frequently) but it did not work for him. problems w/ leaks and continued UTI's . Urologist pulled it. took weeks to heal, and stop leaking urine from that site. it was awful.

despite our experiences it could be good option. Interogate urologist fullly before agreeing to surgery for it. (risks, complications, care, etc.)
there are some catheters with silver (expensive) but said to prevent frequent UTi's...
when my dad got UTI's he get very sick-physically and several times became delusional, w/ hallucinations.
he hasn't had UTI's since, but it is a concern as are kidney issues and other med problems that continue to be watched, monitored .
He recently had some infection, or virus--DR was concerned about pnemonia . He's still not feeling well but not worse. He has major problems w/ bodywide edema. Feet/legs most visibly affected. CHF seems culprit.

He went into Renal failure few years ago, but never had dialysis. after hospitalization, spent few months in nursing home for rehab. He returned home stornger from intensive PT , OT and other therapies.

He is a very determined man and put himself on a bladder [re]training program. He now usually knows when he has to go and asks for assistance, but sometimes doesn't or make it in time. We use incontinent products
Skin breakdown is a concern .

some aspects & realities of caregiving.... advocacy is also vital....
I could go on, but hope more will be discussed in future...about various issues, concerns; for sharing and support...

I pray you can care for your h/b. and don't get sick. Caregiving is notorious for that, whether the streses or that many carers don't take good care of self....

perhaps can/willl share more ....

wishing you all the best...

hang in there girlfriend ... i hope that you and i can exchange thoughts and ideas ... and hugs too ... hows the fishing