Forum

Difficult Times

Hello all,

I’m on here everday and have been for a number of years but have never posted before.

By way of background I’m a full time carer for my wife having given up work just over a year ago. My wife is SPMS having been diagnosed back in 2000 a year after we married. She’s just about to turn 52 and I’m 44.

We have seen her MS progress fairly steadily over the past 7 years or so and in particular over the past 12 months. So much so that we’ve always tried to stay ahead of the curve in terms of moving house (now in a 2 bed ground floor flat) and saving “rainy day” money in preparation for a time when we both may not work etc. My wife was medically retired and gets a small pension. Things have seemed controllable until recently.

My wife has problems with the things most of us will be all too familiar with ie fatigue, eye sight, fairly severe cognition problems, bladder (catheterised since last Oct) and above all mobility. She is now at a stage where although she can weight bear she can’t get up from a chair, into/out of bed without my help. She cant go to the bathroom herself, clean herself, empty her catheter bag etc. If I get her to her feet with a 4 wheeled rollator in front of her from her chair I need to support her weight until she balances. On a good trip she can just about manage 6 metres to the bathroom door. It’s slow so slow and painful to watch and takes a lot out of her. So much so that in recent months I get her from her chair to the bathroom door in her wheelchair and she walks in the final meter. This involves quite a lot of lifting up from chair, wheelchair etc. I do this by hooking my arm under hers and pulling her up on a three count. Yes, you guessed it I have a sore back.

Over the last few months we have had a lot of contact with the Council and Occupational Therapist (who has dealt with us over the last couple of years). She has been great.

I have started to see changes in myself this year. I can get very short tempered with my wife and for no real reason now start to get very upset. It doesn’t take much for me to end up in tears especially if I’m talking about my wife. I worry constantly and find it difficult to concentrate on for example a book or a bit of telly once my wife’s in bed. This hasn’t been helped (and the reason I’m rabbiting on liker a fool) by the following.

For the last while or so I’ve really felt the need for a respite break. One way of doing this was to look at getting carers into the home to look after my wife while I got a week or at least a few nights away. I realised that no professional carer is going to come in and want to pull my wife out of a chair, bed etc so asked Social Work what to do. OT came back out to see us and did a full assessment on her needs. On the basis that she cant condone me doing all the lifting/pulling into/out of chairs and beds etc that I’m doing for either my own health or that of carers coming in she recommended a mobile hoist along with shower/commode chair and profiling bed (we had already been at the point of toilet cages, bed raisers etc). She also recommended that Homecare come into the home daily to get my wife up wash, dress etc and also a tuck in service at night. She would also recommend additional visits during the day.

All the Homecare is required because although I knew hoists etc might one day be a possibility I naively didn’t realise that as the sole carer I can’t use one! It has to be operated by 2 carers. I know this makes sense but it has left us feeling that at 44 and 52 we are about to lose our independence. For the moment I have agreed to the morning service because I was starting to find showering and dressing difficult and stressful on my own. Also on top of this because we have a fairly decent level of savings (which I now wish I’d blown on a yacht!!) we are paying potentially £28 per hour of care until the moneys run down.

My heads up my own backside at the moment. Due to her cognition difficulties my wife tends to just go with the flow almost in her own wee world and would never start a conversation about any of this. I feel going forward if I can’t use the hoist then there’s very little I can do for her on my own. It’ll be a constant stream of carers. Im resisting just now and carrying on with my own way of doing things.

My biggest worry is that every day I think about leaving. Basically seperating and taking some of the money we have while it’s still there and renting somewhere locally. I would still intend looking after my wife and being there but just not involved in the day to day care. I dream it would give me a feeling of my own space and some life along with the ability to work again. In a better frame of mind with some breathing space between us might work better for both of us. I worry that if I don’t take the chance to do this I’ll burn out here which won’t help either of us. I still love and care for my wife. It’s not her that I want distance from it’s the situation we’re stuck in. I worry that if I feel this way at 44 how the heck do I fight through to 54 etc!!

Genuinley sorry for the length of the post.

If you stuck it out this far through my ramblings you have my thanks already.

Wow! Quite a lot of your story could be written by me!

I am actually the cared for one in our house, by my hubby. We are 60 (me) and 65.

When he was 50, my hubby`s firm relocated and offered him early retirment/volutary redundancy. He took it. It was a good package. He planned to take a year off and then do something different. He got his wish alright…the different job was in becoming my full time carer!

In that year off, i began with PPMS like problems, which worsened rapidly.

Like your wife, I was diagnosed with probable MS in 2000. My current diagnosis is not one of MS, but a similar disabling condition.

My hubby has rheumatoid and oesteoarthritis…which quickly deteriorated too. I kept asking if we could get carers in, but he was adamant that it was his job alone to look after me.

After a few years, I went behind his back and arranged for carers. Direct Payments pay for it, as we have no savings left, after spending around 32k altering our house and buying equipment.

We did have a portable hoist to use when my mobility went altogether. It was a horrendous machine to use, so I know just what you mean. it was heavy, took up so much room and resisted movement over carpets. So we got a ceiling hoist installed. Paid for by the council. it is a brill bit of kit…we have one in the lounge and one in the bedroom. It makes life so much better! Why not enquire about having one?

I am saddened to read you think about leaving your wife every day. If you think you could do so, without worrying yourself silly about her, then so be it. Respite is a much under valued thing. I used to get it twice a year for free, now I have to save hard to pay for it. Carers go with me, so hubby gets a rest.

As you are only 44, what about going back to work either full or part time? More care could be arranged for your wife, I`m sure. I know the govt wants us to stay in our own homes as long as possible.

Your lot is a difficult one. No-one can judge you for your thoughts. Being dependent on a carer 24/7 is no picnic, for either party in a relationship, I know!

luv Pollx

Thanks very much for taking the time to reply.

The ceiling hoist is a great idea and certainly one I will approach the OT about. I beleive there might be more chance of me being able to operate this safely on my own. The carers do like the mobile hoist we have and seem to reckon it’s a good one however going forward I think we need to retain some feeling of independence without having to rely on two carers appearing at different times of the day. It’s hard to predict bowel movements and the odd bouts of wetting she gets even with the catheter and I don’t want to have to contact the community alarm service to come out and help toilet her as has been suggested.

For the moment still academic because she is able to weight bear once I get her to her feet and has just enough walking ability combined with indoor wheelchair use to ger her around. Things are however definately on the margin.

Although I think about leaving it’s more about wanting to run away from the situation itself more than actually leaving my wife. To be honest I know I couldn’t go because I care about her too much and in reality would not have it in me to leave her on her own. I think it’s just a knee jerk reaction and a wee bit of panic on my part that I can’t control things for her. I know in reality the proverbial grass always seems greener…

I think as you mention getting some sort of respite break arranged would be a good thing. I’ve only stalled it because there always seems to be something in the pipeline. She’s due a date through anytime now for her Supra Pubic Catheter (should have happened 8 weeks ago but her thyroid packed up!). Since posting she’s now got another chest infection and a probable frozen right shoulder to boot. Hopefully once things settle!!

Your right about employment and I have been giving that thought. Need to get my head round how that can work in relation to the earning restrictions of carers allowance and cost of care itself. It’s not likely to benefit us financially at the moment because we pay full whack for care and will do until our savings run down but I know it would benefit me. I’ve always worked and been lucky to have good jobs.

sorry to be so doom and gloom. Probably just down to a lot of things coming more into play in a fairly short space of time.

Thanks again.

It is good that you have felt able to post on here. I am sorry that life is so tough, and that it is hard for you to see a way through. This is a very cruel disease. May I suggest that you post on the Carers’ Section as well as on this Everyday Living section of the Forum? That is probably the best way to get in touch with other carers who share the kind of problems you face. Good luck with it all. Alison

Hello Corlic,I’ve never read such a long post,but it’s very well written and you’ve put heart and soul into it.A thing which occurs is would a powerchair fit around the house and do you think it would help.For £1400 you can get a Shoprider Malaga,and believe me,it is a marvellous bit of kit.

You strike me as being intelligent and organised,so you’ll have thought along every avenue.Is there nothing which could amuse you a few hours a week as a bit of relief? That’s a hell of a thing to admit your deepest thoughts,but if you did ‘Do one’ how would that feel.You say you still love her…Does she still love you?

Don’t fret about the yacht,you did it while you could and will have good memories. A wise and wealthy man once told me,“The happiest day of your life is the day you get the boat…The next is the day you get rid of it.”

I wish I could be of more help, but you should get some ideas from the replies

Regards, Steve

ps The OTs and Fizzios et al may be the ‘experts’ but you are the user. The NHS works for you.

Hi Corlic MrH read your post as a fellow carer. He said to tell you that two things that have really helped him are, joining his local carers association and the counselling sessions that his GP arranged for him. He says that just ranting and being able to lay it all on someone else once a week has given him a release valve. Catherine Xx

Hi Corlic MrH read your post as a fellow carer. He said to tell you that two things that have really helped him are, joining his local carers association and the counselling sessions that his GP arranged for him. He says that just ranting and being able to lay it all on someone else once a week has given him a release valve. Catherine Xx

Hi Corlic, you’ve just verbalised what a lot of us anticipate our partners will feel at some point. Good luck wth whatever you decide to do but do seek some help as you need to think through your options carefully. Sonia x

Hi Corlic, I can relate to so much of what you have had to say. I have been a carer for my hubby for the last 17 years and empathise with everything you are saying.

Just a couple of things - as said before, push to get ceiling track hoists. Mobile hoists are a nightmare and I refuse to use them. Ceiling track hoists do require 2 carers when outside carers are used but for you, being the husband, you are allowed to use it on your own. I have carers do the mornings for me and I have to have a ‘double up’ (2 carers) but the rest of day I do it all on my own but it is absoultely no problem as long as its ceiling track and not a mobile. It’s hard to accept carers in the beginning but after a while you will realise it’s the best thing you ever did.

Also, definitely look into getting some respite - this will do you no end of good - it does me! doesnt happen very often but when it does, as carers, we REALLY appreciate that time out.

Also, the issue of wanting to leave - totally understandable but as you said, it’s identifying the fact that its the situation you wish to escape from and not your wife. It’s just that the 2 can get distorted and your feelings can get confused, it’s natural, believe me.

Counselling really can help you with these feelings. I never thought that counselling could resolve my situation and although it can’t in one way, it CAN help you to make sense of things and it is well worth going for.

Also, sorry if OT’s are reading this, but you really have to put your foot down with them, it is you living this life, not them and you will have to insist on what you want, for example ceiling track hoists etc. I have them in every room of the house - I keep banging on the table until I get what I need!

None of what I have said comes easy and all takes time to learn and adjust and feelings can be all over the place but you CAN do this. MS is a terrible, cruel illness, I cannot pretend. I am constantly saddened and angry by it but strength can be found and life can be enjoyed in huge ways. Hope this has helped a little. Julie

Folks,

Thanks to you all for taking the time to reply and offer such good advice.

I’ve decided to bite the bullet today and increase the Home Care to include a tuck in at night as well as the mornings. My wife’s shoulder/arm is getting worse and more painful with up to a 4 week waiting time for physio. I’m waiting for the GP to call re an effective pain killer. This will save me having to get her to her feet at night to undress then trying to manouver her into bed comfortably (last night was tricky and took several attempts knackering me in the process and more importantly being none to comfortable for her).

I think the ceiling hoist is definately the way forward. I also need to look at better seating for her (at the moment it’s just a basic high back chair). I know that I need to at least speak to my GP and/or consider counselling. Getting a respite break is also at the top of the list. I am pretty desperate to get some time away/breathing space.

It’s definately a case at the moment of “can’t see the woods for the trees”. I’ve just not been sure where we are with the constant changes both in her condition and with suddenly introducing things like Home care (and it’s costs!) and hoists. Can’t say I’m not used to it as things have been quite actively progressive over the past 6-7 years but for some reason this period feels different.

However it’s good to be able to raise all this with people who (sadly) know what I mean.

Thanks again.

Hi again.

I am so glad that you are taking on board the various bits of excellent advice offered by so many caring forum members.

yes, get that ceiling hoist ASAP.it is URGENT. It does take time to go through the council channels, I know. My OTs have done their very best to fast track my needs.

And when your wife has the spc op, that will also make both your lives easier. It`s heaven to be able to empty into a bottle or the loo, without having to go through the knackering rigmarole of transferring and removing clothes. Mine is 9 weeks old today. I get soreness if the pipe is pulled…I call it Popeye!

Those care fees are abominable and I dont pay towards mine, as we still have a sizeable mortgage and live on an overdraft! To think you`ve been diligent and saved well, then to have to pay it all for basic needs, is a stinker!

Your mind set is excellent and I know you do love your missus…warts and all…same for us 2!

Be good to yourself sunshine!

luv Pollx

Glad to hear you are feeling more positive and getting things moving. Definitely go to see your GP re counselling asap as the waiting list can be quite long so best get on it as soon as you can!

Once you have the ceiling hoists, life WILL become more easy, it sounds like a thankless task you are taking on at the moment and your health will suffer. I cant speak highly enough of ceiling hoists, I do the night shift on my own (along with all the daytime transfers) as it is so easy so hope you can get this sorted quickly.

Also get in touch with the carers trust and the respite association to see how they can help you with some respite. Also the MS society will be able to help you with finding suitable respite. Again, respite is another thing I can’t express just how important it is.

Also, just because this has been ongoing for 7 years, it doesn’t mean that you wont find times that are harder than others. MS is progressive and forever changing so you constantly have to adapt and re-adapt.

Emotions also change all the time and things get to us. It is perfectly acceptable to let these feelings into your head and let them ‘sit’ there for a while but counselling will help you to see a way through them and realise that we are all capable of carrying many, different emotions at any given time.

Good luck and I hope things start to improve very soon. Julie

Another nugget of good advice!

pollx

Does your wife receive DLA ( now PIP ) This is not means tested and she would get the high rate for both mobility and care. That will take some pressure off the payments for carers. I really feel for you and your wife and there has been some excellent advice given by people on here especially Poll and Julie who can relate to your situation. Hope you can get everything you need to make yours and your wife’s life a lot more comfortable. Take care xx