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398059 tn?1447945633

spouse of somone with MS

My wife has so far been very good to me.  I am still able to earn a decent income and have health insurance.

My wife’s brother in-law also has MS.  His situation has been one for a number of years where he cannot even feed himself.  His wife has pretty much stuck to his side and performed most of the nursing activities.  She feeds him and helps him with all his personal needs.  This I know is starting to weigh on her a great deal.  They do have sufficient financial means for extra help.  Yet, she does not falter in being there for him.

It seems that most of those on this forum with MS are woman.  I wonder how diligent men are with there wives who are unable to take care of themselves.

Also, I do not want my wife to be stuck nursing me.  So, I can only hope my MS never gets as far along as my wife’s brother in-law.  I know that I will not be able to afford anyone to come in to help or be placed in a nursing home.

What happens with all of us who do not have the financial means to have the additional help?
21 Responses
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398059 tn?1447945633
I was thinking and realized that a mistake I made probably confused some folks.

I called by wife's uncle her brother in-law.  He aunt is taking care of her husband who is my wife's uncle.  Minor detail that can make a story hard to understand if it is not correct.
Helpful - 0
195469 tn?1388322888
Oh Deb, your post was so sweet, it made me weep.  What a beautiful post.

I am also so touched by what Michael says....you can tell that this man truly adores his wife.  It's so refreshing to hear him talk about his lovely wife and the care and concern he has for her, hoping that she is never faced with "nursing" him, if the MS becomes too much.  Only a loving and caring man, would show so much consideration for his wife.

This was a truly wonderful post.  The responses were great and it was a wonderful discussion.  It makes all think of what the future may hold.  And it's important to plan for it.  So much uncertainity.  Life is uncertain...

Heather
Helpful - 0
429700 tn?1308007823
That truely is a very scary thought--one that I'm not ready to even think about.  Some things I've carefully put away in one part of my brain (probably the most damaged and demyelinated part of it) and will face that at a time when it's at my doorstep.  This is one issue that takes lots and lots of faith.

Much like Heather, I've had some very unpleasant times when my husband had to do things for me that no other husband would ever put up with.  At my lowest point, he told me that he feels his sole purpose in life is meant to be my support.  So, I feel that the only thing that I can do in return for my husband, is to remain as positive as I possibly can (which isn't very easy, **** it!).  

Deb
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195469 tn?1388322888
We all have pride.  I totally understand what you are trying to say.  The love you have for your wife totally shines through your words.  She is a lucky woman.  Saying that, I am sure that she would say, "Michael, when we married, we promised that we would take each other for better or for worse, in sickness and in health, until death do us part."

As a caregiver, I am sure that she would be by your side no matter what the future of MS held for you.  I understand that you do not want to put your wife through the trials of nursing someone that may need it.  Taking her time to take care of you.  But I believe from what you have said about her that she is one woman that would actually delight in caring for her husband through ANYTHING, even if it was hard work and emotionally exhausting.  I know it's because of your tremendous love for her, that you never want to put her through that.

I understand what you are trying to say.  I wonder how your wife would comment if we asked her how she would feel, if it came down to caring and nursing you, if the MS were to get to that point?  Of course, I would never intrude on your life, by asking her that.  From what you have told us about her though, I feel that she would do it because of her undying love for you.

Look on the bright side Michael, I believe that there are great advances on the horizon, when it comes to curing and reversing the damage from MS.  I am betting on it; for your sake and for the sake of all those with MS, I hope that we will see it in OUR lifetime.

Best Wishes Michael.  You are blessed to have such a giving wife, who obviously loves her husband very much.

Heather  
Helpful - 0
398059 tn?1447945633
if pride is an issue with me i think i would side on having someone not my spouse to have to look after me.  I do not want my wife to feel she is trapped in a situation where she must be there at my  every need.

she has so many talents that she can use. I prefer she spends her time being the writer that she is.
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398059 tn?1447945633
ok, I did also express some of her frustration too.
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195469 tn?1388322888
When a person becomes or should become disabled to the point where they need home health care or a nursing home when their financial resources won't support it, I know from family experience, that the state steps in and will offer assistance.  This is usually under the Medicare program.

I know it's not a joyous thing to think about, but at least that would be one less worry for you, even though it would be hard for a man as independent as you, to want to see help come from the State.

I hope and pray that you will never have to face that dilema.  But MS or no MS, as we age, a nursing home is a real possibility for most of us.  It seems to be a fact of life.  I have always asked my children if they were financially able, to honor me, by doing everything they could to keep me out of a nursing facility.  I hope that I will be able to provide enough monetary provisions in my life, for them to do be able to do just that.

I understand your worries and they ARE real concerns.  Something we all must think about as we soon become senior citizens.

Hang in there Michael.  We are here for you, buddy!  As much as we can be.  If for nothing else, emotional support.

Heather
Helpful - 0
195469 tn?1388322888
Michael,

This is what you wrote in your second post...this is why I posted what"I" did.

"I can already hear in her voice at times the concern/frurstration over my body and abilities  starting to sink there way into her thoughts and worries."
Helpful - 0
398059 tn?1447945633
I never intended to express concern about how my wife would act as time goes on or how she would act if my MS progresses in a way that would leave me incapable of normal everyday activities.

My best friend is my wife and I know she feels the same about me.  What I did say is that I do not want her to be in the same position that her aunt is currently facing.

I appreciate the advice about not worrying about what has not come to pass.  My wife has similar advice for me as well.  And for the most part I follow that advice.

The thing is that I have been struggling to concentrate and perform a job that requires great concentration.  I am performing at a much lower level than I have in the past.  I am not at all comfortable with this situation.

Also, I have been dealing with exacerbations lately.  My normal positive attitude is not as positive as I would like.  I find myself failing and my wife telling me more about her aunt has got me questioning how I can keep her from that same situation.

Helpful - 0
231441 tn?1333892766
Scary thought.  I am single and live alone.  If I got to the stage where I couldn't work or needed help I don't know what I'd do?  Maybe after I'd used my savings I would have to consider....

Anyway, I am not diagnosed, so obviously I can't have MS and it must be in my head!
Helpful - 0
164435 tn?1377102256
THIS IS A GREAT SUBJECT, I THINK HEATHER, GOD BLESS
HER AND HER HUBBY SAID IT ALL.
I AM NOT MARRIED, I LIVE WITH MY HONEY,
NOW FOR 11 YRS. I FEEL THE SAME WAY.
I NEED HELP AND MY HONEY IS THERE, IT IS HARD
FOR ME TO EXCEPT HELP. I AM NEW TO THIS S---T.
I WANT TO BE THE OLD ME AND DO THINGS,
ON MY OWN, BUT I AM LEARNING TO EXCEPT MY HONEYS HELP.
I STILL CRY THINKING, OMG WHAT HAPPENS TO ME
IF SOMETHING HAPPEN TO HIM. STILL I DO NOT WANT
TO THINK ABOUT IT. I HAVE NO ANSWER..
THIS IS WHAT I SAY:
WHEN LOVE IS STRONG
YOU NEED NO WORDS
FOREVEN IN SILENCE
LOVE IS HEARD.
HOPE I MADE SENCE.
HUGS  KITT
Helpful - 0
Avatar universal
You just never know what comes up. When I was healthy, 6 years ago we purchased long term health care insurance  for my husband and me.   This was before I was diagnosed or even had a clue about MS. I wasn't on any medications. It was even one year before my DVT. The broker for LTHC told me a couple of years ago that if I had the DVT at the time of application for LTHC, I  would never have been approved.  The irony is that I checked out okay medically and my husband  who is on cholesterol and bp medications had to have his bp re-done as it was too high.

We are both on Medicare A & B  which they take out of our Social Security.  The only blessing is that you don't need referrals and doctors visits and tests cost nothing after you meet your deductible for the year of $135 each per year.  Anything Medicare doesn't pay out, BCBS covers.  Prescriptions cost less as we are on plan D.  Currently I aam not taking anything. However the MS drugs would fall in the donut hole and we would have to fork out about $5600 a year if I took them.   It is my choice not to take them and it has nothing to do with cost and more to do with side effects.

I was working it out the other day actually and we pay for the following health related insurances:

Medicare Part B insurance  (Part A is free)
BCBS supplemental Insurance (picks up the slack from Medicare)
Prescription D coverage (There is a co-pay depends on the drug but not huge)
Life insurance (husband)  Irony is I am going to go first!
Long Term Health Care
Dental Insurance (Hubby works part time pharmacy)
--------
All this totals $1,070 per month  ($12,084 a year) just on health.  

The Long Term Health Care provides for in home care when necessary. They pay a certain determined  amount ($135 a day) for a relative, neighbor, friend or professional to come in and look after you if you want. You do not need to go into a nursing home.

Although I have my dear  husband to lift and carry things,etc and do the shopping, I shudder to think of him as a "nurse",  I experienced his skills when recovering from foot surgery after my fall and if I hadn't been so weak and totally incapacitated I would have told him his fortune. He tried his best, though, but mostly he pretended to be deaf. Give him his due I know it was difficult but if he had to feed me or wash me or dress me ...........forget it!

I know it seems too soon but for those that are not diagnosed  it might be an idea, if you can afford it, to look into LTHC.  The earlier the better.  I wish I had done it before reaching 62.  MS is one of the neurological illnesses they do cover but if you are dxed before applying, you will be turned down. They won't cover things like after surgery, etc. i.e. hip replacement, etc.  as I guess they figure you have health insurance for that. It has to be a long term disability.

It is just a thought of one more thing you could do. You just don't know if you will end up needing help or not.  I really sympathize with anyone that has financial difficulties.  I don't have the answers to what health care would be available down the road for a person with limited income but there has to be some assistance out there.


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195469 tn?1388322888
Your post sweetheart, is what this is ALL about.  Your post made me weep with happiness for you and the love you share with your husband.  What a beautiful story.

I would bet that if Michael sat down with his wife, she would tell him also, of her unconditional love for him...

Heather
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382218 tn?1341181487
When I think about the support I have gotten from my husband these past few months, it moves me to the point of tears.  He has been completely accommodating with whatever I need; ie: taking time off work to drive me to numerous appts, both in and out of town (neuro is 4 hour drive away); doing ALL errands outside of the house (I haven’t set foot in a grocery store or pharmacy since Sept); always bringing something home for me to pass the time (movies, books, papers, magazines); encouraging me to do what I can (ie  kicking me in the butt to join him for a walk) but not pressuring or questioning me if I can’t do something.  

He seems to have a sixth sense about knowing when I’m being a couch potato out of sheer laziness, and when I’m truly at my physical limits because of the MS.  He can be protective and yet does not treat me like an invalid.  I am grateful that he does not walk on eggshells around me; that he still cracks jokes and pokes fun at me when I am deserving of it, which is often.  Despite everything, we still have so many laughs.

The goodness that he has shown to me has motivated me more than ever to do whatever I can for him.  So on my good(ish) days, I try to make a nice supper, bake him a pie, do some laundry; whatever I can manage.  MS has turned this career woman into quite the homemaker, if only for the time being till I can get back to work.  It makes me feel good to do something for him, however small.  Then again, there are lots of days I can’t do any of that, and those days are ok too.  We order in, snuggle up and watch reality TV, and relax.

It felt like the world was coming to an end for me when I was dx’ed, and I couldn’t imagine I would feel happiness again.  But those feelings did pass in large part to having him by my side.  It’s easy to be a good partner when life is good; not so easy when faced with these hurdles.  I’m a lucky girl to have married someone of his character and strength, and I don’t let a day pass by without reminding myself of that.

db1
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195469 tn?1388322888
Michael, I was so touched by your post.  Please let me explain.  This is embarrassing, but I am going to share it with everone anyway.  Michael, I also have MS and luckily I am told after 13 years from diagnosis that my PROGnosis is good.  I understand that based on my course of relapses and remissions over the past 13 years, that there is a good chance that I will never need a wheelchair or become totally disabled.  At least that is what I am told.

The other night, I had the most humbling experience, which my better half handled with love and compassion.  I lost total control of my bowels in the middle of the night.  No warning..nothing!  This is the first time this has ever happened to me.  

The MS course I seem to suffer from affects my legs the most.  I have some partial numbness in the genital area, which my partner in life, is totally aware off.  We have discussed this at length.  His love runs so deep, that he now takes the extra time needed to make our intimate time together, as satisfying for me, as it is for him.

When I lost control of my bowels, this man got up in the middle of the night, helped me straighten everything up (offering to change the sheets, etc.) and offered me his arms to hold me; since I was visibly shaken by this experience.  Instead of him lying down to get more sleep, he stayed up with me, while I took a shower.  Never once was he sickened by my experience.  This is love...very deep and unconditional love.

This whole experience showed me the depth of his love, despite what this MS might bring.  As I am sure is the case with you wife, my partner told me that this is something we will always handle together.  He said that I should never feel bad about the "side-effects" this MS disease may bring.  We will go threw it together.  He said, 'I know that you love me enough, to do the same thing for me; if I was the one with MS."

He's right.  I would be there for him and will be there for him, no matter what life throws our way.  This is what love is all about.  Giving and receiving.  I DO feel that your wife, if you ask her, would tell you the same thing.

Perhaps now is the time, for you and your wife to sit down and talk about your feelings concerning your future with MS.  I believe with all my heart, that your wife will tell you exactly what the love of my life told me. That he will always be there for me, no matter what life throws at us.

Best Wishes Michael.  I DO understand your feelings about the unknowns of this disease.

Big Hugs,
Heather
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Avatar universal
THIS IS A GOOD TOPIC,

I AM SEPERATED FROM MY HUSBAND,HIS COPING LEVELS ARE NOT THE GREATEST,BUT HE DOES TAKE ME TO ALL MY APPOINTMENTS.

WE CAN IF THIS AND IF THAT. WE DON'T KNOW WHAT THIS DISEASE IS GONNA BRING US DOWN THE ROAD.IT IS A SCARRY THOUGHT ABOUT WHAT IF WE NEED DAILY ASSISTED(SP) LIVING.I'M FORTUNATE TO HAVE INSURANCE THAT COVERS THAT.

I HAVE 4 CHILDREN AND THIS DISEASE HAS LEFTME WITHOUT DOING THE THINGS I SHOULD BEABLE TO DO WITH THEM.IT GETS FRUSTRATING,BUT WE DO NEED TO FOCUS ON THE NOW.

T
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398059 tn?1447945633
No, you did not get off track.  You spoke directly to my post.

I can already hear in her voice at times the concern/frurstration over my body and abilities  starting to sink there way into her thoughts and worries.

Especially in the last couple months, with my recent exacerbations, the understanding that things have gotten worse and could get much worse have us both thinking.
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438383 tn?1204663962
Hhhhmmmm I dont think it matters man or woman....those thought cross all of our minds...my husband has been amazing but we have only been dealing with this for a few weeks, and I still havent been dx.  But the thoughts for me are there already...we have no insurance, my husband is a young contractor who just started his company a couple of years ago.  He is already planninng to put his company on hold and work for a bigger company that has insurance...but then you have pre existing conditions, who knows if they cover that....but if we sit and dwell on the what ifs, we are not focusing on the right nows and we need to stay strong and focus our attentions on being well, mind body and spirit.  My prayers go out to you and your, Cheryl Ann
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335728 tn?1331414412
I am very fortunate in that I have a husband that seems to want to be by my side no matter what and he says that it will not change...I have warned him that it's possible that it could, should things worsen medically, but he says simply, "we have no children, we are not very close to our families BUT we have each other and we are blessed with the fact that we enjoy each other's company so I am gonna stick with it, how about you?"
He makes me cry every time and thankfully this subject only comes up when I am in a medical ditch.

If I didn't have him I guess I would probably end up in one of the government funded extended health care centres whether I wanted to or not, wouldn't I?  These extended care centres are becoming few and far between though due to an influx of people from out of province and with all the baby boomers retiring now at the same time, industry is having a tough time replacing workers.  What about once the baby boomers start to have old age illness and disability settle in...they had better start building some more extended care centres pretty soon!

Helpful - 0
393986 tn?1303825975
  It is a tough subject, I'm glad you have a wonderful wife, Michael. I'm sure she would never feel burdened by you. I doubt you would give her any reason to anyway:). Although I love my husband sometimes I fear he would like to run as fast as he can away from me.  When we first got married we used to ride Harley's all of the time.  Now since this h*** found me we have sold our bikes and we argue all of the time.  Sorry, I feel as if I got off track with this. I'll talk at ya later.

Spazie Ada

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Avatar universal
This is a scary topic indeed. I am divorced and live alone. I'm well able to take care of myself and hope to heavens that things stay that way. So I've decided to just not think about the possibilities unless I really need to, because that might detract from the good life I'm having now. I see why your family situation calls this to mind, but try not to dwell on it if you can. Most of what we worry about never happens.

ess
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