Forum

Carers Depression

Caring for someone with MS
#1

Hi All,

It’s been nearly 2 years since I was last on this website. Since then things have gone down hill concerning my wife Joanne’s MS, both for herself and me. I will give you all a synopsis of events.

My wife Joanne was diagnosed with RRMS in November 2004, shortly after diagnosis she suffered a total body shutdown and things went downhill fairly swiftly. She was eventually put on the beta interferon drug “Rebif” This worked for her initially and things began to settle down. 18 months ago Joanne was told her condition had progressed to Secondary Progressive MS, they took her off the “Rebif” because they said they couldn’t definitively say that it was still helping her as her symptoms had now progressed. Joanne has suffered from Optic Neurosis in both eyes, has had a spastic tongue that just flops out on it’s own accord, had difficulty swallowing so now eats mainly soft foods. She has virtually no short term memory functions, has spastic shuffle and has just recently developed spastic arm and leg movements that are now about to confine her to an Electric Wheelchair. She has extreme swelling of her fingers and more inportantly her legs, she suffers from extreme fatigue and we have also just found out that she may be suffering from Sleep Apnia.

I gave up working to become Joanne’s full time Carer in August 2005.

I am now 45 years old and I am defined as simply Joanne’s Carer, I have no friends anymore, noone to turn too, and too top this found out 6 months ago I have Type 2 Diabetes.

I see no light at the end of my tunnel, thoughts tend to drift to things they should not… I used to have an outlet of playing golf twice weekly but now she has asked I stop even that. She see’s I am loosing that sparkle I once had.

We married in June 2008 and on that Special Day we were 2 people looking forward to sharing our lives together, now we share nothing, no tender moments, nothing. We occupy the same house but that’s as far as our joint lives go. Tonight I asked Joanne what our future holds in her eyes, to which she replied “You Caring for Me”

It would seem I am destined to be just a “Carer”, to care for someone I Truely Love Very Deeply, but that is just that, I am destined to have no life of my own.

I find myself resenting her for this but deep down I know she did not wish for this Illness.

Sometimes the life of a Carer is a very lonely road to travel.

#2

Hello love.

I can see similarities in our life.

I was mis-diagnosed with PPMS for years, but now have a less accurate diagnosis. But my symptoms are very similar to MS, hence my being a member of this forum.

My condition progressed rapidly, which meant I relied on my husband for so many things. At this point we`d been married for over 35 years. he was my sole carer for 11 years and would go mad whenever I suggested getting other help in, to ease the load on him.

But as he has progressive rheumatoid and oesteo arthritis, I could see what looking after all my needs was doing to him.

By the way, he retired at 50 to look after me.

So, 2 years ago, i went behind his back and risked his wrath and applied for Direct Payments. i was successful with my claim, was has been increased twice since. I now have a daily carer to get me up, showered etc…plus I am taken out once or twice a week by 2 other carers and one sleeps over one night a week.

My hubby took a while to get used to our new set up, but now loves it and his bit of time to himself.

Do you think you would benefit from getting such help? if so, ring your Social Services and ask for an assessment. Its made a marvelous change to our lives. If youd like more info, please ask me, yeh?

pollxx

#3

hi A,ndy, I also feel in a similar situation to you ,my wife 2nd prog for 10 years now , 23 ms no speach or movment and many other things which need care, I dont know about you but do you find you feel obliged to put a posative spin on your role, just to be brave. Somtimes there are no answers, I feel, just dreams , I dream about a few people in our situation about twenty say turning up with our loved ones at starbuks or costa for a ms flashmob coffee ,not feeling different, for once ,most people are great ,but it would be good to feel not a minority . Im mid forties also and my wife has had ms most of our relationship ,spin aside, i worry she suffers and feels fear, as she cant communicate, two years now without a word, ive forgotten what her voice is like, and treasure her old daily diaries from 6 years ago when she could write a little .A bit depressing sorry, but I feel a bit stuck ,would like to work again but my wife needs me at the moment as i speak to her. At night she grinds her teeth and doesnt settle well , I have two children, older now, I battle to keep normal, for them and will keep going, but,I have dreams yet to Dream ,could we not have a place to go, without the spin and nonsence, a normal place where carers could go with their cared for ,need to dream some more ,night for now,fr

#4

Hi Franki, is there a carers group in your area? I think there could be and it would be helpful to you.

Also, have you thought about applying for Direct Payments? I have this and it pays for carers to give my hard pressed hubby a break from caring for me.

I can explain further, if you like.

pollx

#5

Hi Andy, I am in a similar situation to you. My hubby has had ms for nearly 30 years, although he is still only 45. He is now severely disabled and I am his carer. We do also have carers to help out. I fully understand your feelings of a lost future and one of only caring, however, there are ways to deal with this which I am gradually learning. I have been his wife and carer for 15 years so the coping mechanisms don’t come overnight and it’s never easy but you CAN get through it! (And live a meaningful life too!) message me if u wish to chat, Julie.

#6

The world of the sick person and the carer can become very narrow and shadowed.

You need to let a little light in.

For you, this would surely mean getting out to play your golf, for a start. If you are going to stay sane, you need the company of other people, some fresh air, some time away. That way you will be refreshed and better able to perform your caring duties. If your OH cannot see that, it might be that she is so wrapped up in the trials and tribulations of illness that she is not seeing straight. Chronic illness can do that to a person: it can make a selfless person selfish, it can make a generous person minded to curtail others’ pleasure and be envious of their freedom (some ‘freedom’!) Not her fault, but you are not helping either of you by letting her get away with reeling you in and enclosing you in her world until you suffocate. Permit yourself to insist on some time to yourself. This is not a ‘treat’ or a special favour. This is something you need to keep you sane and healthy. Simple as that.

You talk about depression, and low mood (yours and maybe your OH’s too) is always something to take seriously. Even though your circumstances are - Goodness knows - enough to make anyone feel down, there is a point at which low mood becomes chronic and a matter for medical intervention rather than just a reasonable response to b awful circs! If you feel that might just be you (or your OH), talk to your GP. You both have enough to deal with, without having something fixable, like depressive illness, to deal with too.

Good luck with it all.

Alison

#7

Thanks to all that replied.

Your advice was welcome, however, it no longer matters unfortunately.

My wife Joanne has decided she would like me to leave, her mind is made up and she has started to put things in motion to ensure I do leave.

I am devastated…I just don’t know what to do or where to turn.

I have no money to be able to afford to put a roof over my head, I feel so low…

#8

Oh Andy, I am so sorry. I wish I could offer practical advice and I am sure someone will be along soon to do that. You must be very sad. I hope you can contact someone to sort out how to get a house/flat and or benefits. Are you abe to get back into the work force? Being ill yourself you must be entitled to some help. Again I am so sorry. big hugs Linda x

#9

So sorry to hear about leaving ,could it be Tempory ? Ms can affect thinking I think, carers can get caught up in our partners mental struggles ,could you leave for a very short while to let both of you take a breath ,at a very stressfull time. Thinking of you both at a very ms created, time. Try to blame the ms ,not each other,I try to blame ms now, it helps me keep fighting ,in this together etc,hope things get better ,please try to believe in yourself , Im sure you deserve many medals already for courage and effort,. frank .

#10

Just to echo what Frank said really. I am so sorry to hear this and maybe a break could help you both, some time apart to reflect. MS does affect everyones ability to think clearly and interfers with all sorts of feelings and emotions. Be strong and sending hugs. Julie.

#11

I am late here but you can get help for your ms and your wife. I am wondring how many people suffering from this. I am doing research and i have some questions for you you can come to my site at http://aboutmental.com where you can chat with me.

Thanks