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.